supporting traumatic brain injury patients’ family memberscore.ac.uk/download/pdf/19419239.pdf ·...
TRANSCRIPT
Publications of the University of Eastern Finland
Dissertations in Health Sciences
isbn 978-952-61-1316-6
Publications of the University of Eastern FinlandDissertations in Health Sciences
The study examined what
supporting traumatic brain injury
(TBI) patients’ family members
entails and how often nursing staff
provide support for TBI patients’
family members. Additionally,
the aim was to find out what kind
of nursing competence (basic/
advanced) is needed to support
TBI patients’ family members on
neurosurgical wards. TBI in one
individual affects the health of the
whole family.
dissertatio
ns | 205 | K
irsi C
oco
| Supporting Traum
atic Brain Injury P
atients’ Fam
ily Mem
bers
Kirsi CocoSupporting Traumatic Brain
Injury Patients’ Family Members
Neurosurgical Nurses’ Evaluations
Kirsi Coco
Supporting Traumatic Brain Injury Patients’ Family MembersNeurosurgical Nurses’ Evaluations
Supporting Traumatic Brain Injury
Patients’ Family Members
Neurosurgical Nurses’ Evaluations
KIRSI COCO
Supporting Traumatic Brain Injury
Patients’ Family Members
Neurosurgical Nurses’ Evaluations
To be presented by permission of the Faculty of Health Sciences, University of Eastern Finland for
public examination in Auditorium ML3, Medistudia building, Kuopio, on Friday, January 24th 2014,
at 12 noon
Publications of the University of Eastern Finland
Dissertations in Health Sciences
205
Department of Nursing Science, Faculty of Health Sciences
University of Eastern Finland
Kuopio
2013
JuvenesPrint
Tampere, 2013
Series Editors:
Professor Veli-Matti Kosma, M.D., Ph.D.
Institute of Clinical Medicine, Pathology
Faculty of Health Sciences
Professor Hannele Turunen, Ph.D.
Department of Nursing Science
Faculty of Health Sciences
Professor Olli Gröhn, Ph.D.
A.I. Virtanen Institute for Molecular Sciences
Faculty of Health Sciences
Professor Kai Kaarniranta, M.D., Ph.D.
Institute of Clinical Medicine, Ophthalmology
Faculty of Health Sciences
Lecturer Veli-Pekka Ranta, Ph.D. (pharmacy)
School of Pharmacy
Faculty of Health Sciences
Distributor:
University of Eastern Finland
Kuopio Campus Library
P.O.Box 1627
FI-70211 Kuopio, Finland
http://www.uef.fi/kirjasto
ISBN: 978-952-61-1316-6 (nid.)
ISBN: 978-952-61-1317-3 (PDF)
ISSN 1798-5706 (print)
ISSN: 1798-5714 (PDF)
ISSN-L: 1798-5706
Author’s address: Department of Nursing Science
University of Eastern Finland
KUOPIO
FINLAND
Supervisors: Professor Hannele Turunen, Ph.D.
Department of Nursing Science
University of Eastern Finland
Kuopio University Hospital
KUOPIO
FINLAND
Professor Kerttu Tossavainen, Ph.D.
Department of Nursing Science
University of Eastern Finland
KUOPIO
FINLAND
Professor Juha E. Jääskeläinen, Ph.D., MD.
Department of NeuroCenter
Kuopio University Hospital
KUOPIO
FINLAND
Reviewers: Professor Siv Söderberg, Professor, Ph.D., RNT
Division of Nursing
Department of Health Science
Luleå University of Technology
LULEÅ
SWEDEN
Professor Sofie Verhaeghe, Ph.D.
Nursing Science
University of Gent
GENT
BELGIUM
Opponent: Docent Meeri Koivula, Ph.D.
Department of Nursing Science
University of Tampere
TAMPERE
FINLAND
IV
V
Coco, Kirsi
Supporting Traumatic Brain Injury Patients’ Family Members, Neurosurgical Nurses’ Evaluations
University of Eastern Finland, Faculty of Health Sciences
Publications of the University of Eastern Finland. Dissertations in Health Sciences 205. 2013. 40 p.
ISBN: 978-952-61-1316-6 (nid.)
ISBN: 978-952-61-1317-3 (PDF)
ISSN: 1798-5706 (print)
ISSN: 1798-5714 (PDF)
ISSN-L: 1798-5706
ABSTRACT
The purpose of this study was to examine what supporting traumatic brain injury (TBI) patients’ family
members entails and how often nursing staff provide support for TBI patients’ family members. Additionally,
the aim was to find out what kind of nursing competence (basic/advanced) is needed to support TBI patients’
family members on neurosurgical wards. TBI in one individual affects the health of the whole family.
Studying the support provided by nursing staff is important because such support is crucial for the family
members of a TBI patient during the acute phase of treatment.
In the first phase of the study (2008-2010) a systematic literature review was carried out to find out how
previous research during the years 2004-2010 defines the supporting of TBI patients’ family members. The
data were analysed using content analysis. In the second phase of the study (2010-2012) the questionnaire
formed for this study was used to collect nursing staff’s perceptions about what kind of competence
(basic/advanced) is needed and how often it is needed to support TBI patients’ family members. The sample
was all nurses (N = 172) who worked on neurosurgical wards in all five university hospitals in Finland. The
response rate was 67% (N = 115). Descriptive statistics (frequencies, means, standard deviations) were used
and an explorative factor analysis using the principal axis method with Varimax rotation was carried out.
One-way ANOVA, two-way ANOVA and MANOVA were used to examine the relationships between the
background variables and the respondents’ evaluations of how often they gave support to TBI patients’ family
members.
Based on the systematic literature review, informational support related to: TBI patients’ symptoms, TBI
patients’ treatment, quality of information and TBI patients’ prognosis. Emotional support related to taking
TBI patients’ family members’ emotions into account, caring and listening, and respecting family members.
Practical support involved supporting family members in decision-making, promoting welfare, supporting
family members in participating in TBI patients’ care, and co-operating with family members and providing
guidance to counselling services. The nursing staff evaluated that overall, the nurses often provided support
for TBI patients’ families. They often told them about treatment and about their own responsibilities to family
members. Older and experienced nursing staff more often took into consideration issues relating to secondary
injuries. Most nurses considered information about prevention of secondary injuries as advanced competence.
Emotional support was provided most often of the support’s dimensions. All registered nurses and staff
members with long work experience (21 years or more) on a neurosurgical ward reported that they took
family members’ feelings of anger and guilt into consideration slightly more often than other nursing staff
did, although most nurses considered these skills to represent basic competencies. Registered nurses
considered themselves most likely to take into account issues related to liaison with family members. The
nursing staff with long work experience (21 years or more) reported often discussing mood swings and other
TBI symptoms with family members.
In-service training on dealing with difficult emotions of traumatic brain injury patients’ family members
could help nurses to face these situations. Providing practical support for TBI patients’ family members
requires nurses to possess multidimensional practical competences relating to the symptoms caused by the
brain injury.
National Library of Medical Classification: WL 354; WY 160.5
Medical Subject Headings (MeSH):
Brain Injuries; Patients; Family; Nursing Staff; Social Support; (Professional Competence)
VI
VII
Coco, Kirsi Traumaattisen aivovammapotilaan omaisten tukeminen, Neurokirurgisten hoitotyöntekijöiden arvioita
Itä-Suomen yliopisto, terveystieteiden tiedekunta
Publications of the University of Eastern Finland. Dissertations in Health Sciences 205. 2013. 40 s.
ISBN: 978-952-61-1316-6 (nid.)
ISBN: 978-952-61-1317-3 (PDF)
ISSN: 1798-5706 (print)
ISSN: 1798-5714 (PDF)
ISSN-L: 1798-5706
TIIVISTELMÄ
Tutkimuksen tarkoituksena oli selvittää, mitä on traumaattisen aivovammapotilaiden (traumatic brain injury,
TBI) potilaiden omaisten tukeminen ja kuinka usein hoitotyöntekijät tukevat TBI potilaiden omaisia sekä
millaista hoitotyön osaamista (perus/ erikois) tarvitaan neurokirurgisilla vuodeosastoilla. Lisäksi tarkasteltiin
taustamuuttujien yhteyttä siihen, kuinka usein hoitotyöntekijät tukivat TBI potilaiden omaisia sekä olivatko
taustamuuttujat yhteydessä siihen, millaista osaamista he arvioivat omaisten tukemisen
edellyttävän.Traumaattinen aivovamma vaikuttaa sekä potilaaseen että hänen perheeseensä, siksi omaisten
hoitotyöntekijöiltä saama tuki on merkittävää jo TBI potilaan hoidon akuuttivaiheessa.
Tutkimuksen ensimmäisessä vaiheessa (2008–2010) tehtiin systemaattinen kirjallisuuskatsaus vuosilta
2004–2010 TBI potilaan omaisten tukemisesta. Ensimmäisen vaiheen systemaattisen kirjallisuuskatsauksen
tulokset analysoitiin sisällön analyysilla. Tutkimuksen toisessa vaiheessa (2010–2012) kyselyllä
neurokirurgisille hoitotyöntekijöille selvitettiin, miten usein he tukivat TBI potilaan omaisia ja millaista
osaamista omaisten tukeminen edellyttää. Kyselylomake lähetettiin kaikille neurokirurgisilla vuodeosastoilla
työskenteleville hoitotyöntekijöille (N = 172) Suomessa. Vastausprosentti oli 67 % (n = 115). Toisen vaiheen
kyselytutkimuksen jakaumat (frekvenssit, keskiarvot ja keskihajonnat) tutkittiin ja selvitettiin kuinka usein
hoitotyöntekijät arvioivat tukevansa tiedollisesti, emotionaalisesti ja käytännöllisesti traumaattisen
aivovamman potilaiden omaisia sekä sitä miten taustamuuttujat olivat yhteydessä annettuun tukeen.
Aineistoa käsiteltiin eksploratiivisella faktorianalyysilla principal axis menetelmällä ja Varimax rotaatiolla.
Lisäksi tutkittiin taustamuuttujien yhteyttä siihen, miten usein hoitotyöntekijät arvioivat tukevansa TBI
potilaan omaisia, One way Anovalla, Two way Anovalla ja Manovalla sekä lineaarisella regressioanalyysilla.
Systemaattisen kirjallisuuskatsauksen tuloksena tiedollinen tuki oli tietoa TBI potilaiden oireista, TBI
potilaiden hoidosta, tiedon laadusta ja tieto TBI potilaiden ennusteesta. Emotionaalinen tuki sisälsi TBI
potilaiden omaisten tunteiden huomioon ottamisen, välittämisen ja kuuntelun sekä omaisten
kunnioittamisen. Käytännöllinen tuki tarkoitti omaisten päätöksenteon tukemista, hyvinvoinnin edistämistä,
omaisten tukemista osallistumaan TBI potilaan hoitoon, sekä yhteistyötä omaisten kanssa ja ohjausta
tukipalveluihin. Kokonaisuutena hoitotyöntekijät arvioivat tukevansa TBI potilaan omaisia usein.
Hoitotyöntekijät kertoivat omaisilla usein oman vastuualueen mukaisesta hoidosta sen sijaan
sekundaarivaurioiden ehkäisystä he arvioivat kertovansa harvoin. Iällä ja työkokemuksella oli yhteys siihen,
miten usein he antoivat omaisilla tietoa sekundaarivaurioiden ehkäisystä. Useimmat hoitotyöntekijät olivat
sitä mieltä, että sekundaarivaurioista kertominen edellyttää erikoisosaamista. Sairaanhoitajat ja
hoitotyöntekijät, joilla oli pitkä työkokemus (21 vuotta tai enemmän) neurokirurgisella vuodeosastolla
arvioivat, että he ottivat huomioon omaisten tunteet, kuten vihan ja syyllisyyden hieman useammin kuin
muut hoitotyöntekijät. Sairaanhoitajat verrattuna muihin ammattiryhmiin arvioivat olevansa omaisten kanssa
yhteistyössä muita ammattiryhmiä useammin. Hoitotyöntekijät, joilla oli pitkä työkokemus (21 vuotta tai
enemmän) arvioivat ohjaavansa usein TBI potilaan omaisia potilaan mielialavaihteluista ja muista oireista.
Täydennyskoulutus TBI potilaan omaisten vaikeiden tunteiden kohtaamisessa voisi auttaa
hoitotyöntekijöitä tukemaan useammin TBI potilaan omaisia. TBI potilaan omaisten käytännöllinen
tukeminen edellyttää hoitotyöntekijältä monipuolista osaamista, kun potilaalla on TBI aiheuttamia oireita.
Yleinen suomalainen asiasanasto (YSA): aivovammat; potilaat; omaiset; perheenjäsenet; hoitohenkilöstö;
tukimuodot; psykososiaalinen tuki; osaaminen
VIII
IX
Acknowledgements
This study focuses on neurosurgical nursing, traumatic brain injury patients and their family members. The study was carried out at the Department of Nursing Science, University of Eastern Finland. Many people have supported and encouraged me during the research process. I warmly thank all those who I cannot personally acknowledge here.
My greatest gratitude goes to my principal supervisor, Professor Hannele Turunen, PhD, for her excellent and inspirational guidance during this process. Without her support this could not have been possible. My warmest thanks go to Professor Kerttu Tossavainen, PhD, for all those critical comments and for her very energetic positive encouragement, as I always felt very motivated and strong to continue the project after receiving her comments. I owe my sincere gratitude to Professor Juha E Jääskeläinen, PhD, for all valuable and innovative comments I received from him during the process of the study.
I warmly wish to express my gratitude to Professor Siv Söderberg, PhD, and Professor Sofie Verhaeghe, PhD, who have previewed my thesis. Their comments were valuable, constructive and encouraging, and improved my thesis.
I also want to thank Docent Meeri Koivula, PhD for accepting the request to act as my opponent.
I owe my deep gratitude to Neurosurgeon Aki Laakso, PhD, Nurse Manager Marjaana Peittola, RN, Nursing Director Ritva Salmenperä, MSc, Licensed Vocational Nurse Kimmo Seppänen, Registered Nurse Marina Söderström, and Anesthetist Hanna Tuominen, PhD. I also want to thank all neurosurgical nursing staff who participated in my study and also own my special thanks to the contact persons who assisted me in data collection.
I owe my kind regards to my former colleagues in the Neurosurgical Department HUS and especially to Marjo Juutilainen, RN and Jussi Laasola, RN. I shared a lot of laughs with you and you were always so sincerely glad when I succeeded with my studies.
I also owe my thanks to Hannu Isoaho, MA, and statistician Marja-Leena Hannila, MSc, who helped me with the statistical analysis. I’m very grateful to Anniina Moilanen, MSc, RN, Elisa Launonen, MA and Keith Kosola for their valuable help for revising the English text of the articles and thesis. I also express my thanks to information specialist Maarit Putous, MA.
I owe my sincere thanks to my colleagues Leena Lahti, Tuula Kokkola, Kaija Kocak, Eija Korhonen and Tuula Niskanen for providing relaxing fellowship. I am grateful to Maarit Vanhapiha and also to former colleagues Aulikki Joensuu and Tarja Paakkinen for their genuine and encouraging interest in my thesis. I am grateful to Kaisa Aho, Rita Simola and Juha-Petri Niiranen for understanding and also permitting and trusting me to have varied responsibilities, which have motivated me to develop my professional skills during this project.
I warmly wish to express my gratitude to my colleagues Irja Alavuotunki, Päivi Nuutinen, Johan DeCock and Sofie Mulier in international cooperation. I also owe my sincere thanks to Marijke Rebry and Lea Pöllänen.
Maj-Lis Kärkkäinen, PhD, thank you for being my friend and a wise mentor, your support has been precious. Kristiina Helminen, PhD student, I thank you for sharing the path towards researchers’ identity by participating in different conferences with me. My deepest gratitude goes to you and Jouni for giving me the possibility to enjoy your hospitality and also to letting our families to be friends. Merja Jokelainen, PhD, thank you for accepting me as a peer reviewer in your study, I learned a lot with you.
My special thanks go to my dear friends. Ella Komulainen, I thank you for all those long walks and for sharing everyday life’s joys and demands and reminding me that there are also other important things in life. Minna Marjamäki-Kekki and Tero Kekki, thank you for your friendship and thank you Minna in particular for all positive encouragement during
X
my MSc studies. Kaisa Kuhmola, I am grateful to have had a friend like you for such a long time. I also want to thank Ursula Johansson. Susanna Nyman, I owe you my gratitude for your friendship and for reminding me to always be gentler with myself.
I owe my warmest gratitude to my mother Ulla-Maija Tuominen, to my brother Jyry Tuominen, my-sister-in-law Leena Kuusisto and my aunt Terttu Sandholm who has always been very encouraging. I owe my deepest gratitude to my father Teemu Tuominen, who passed away during my thesis process. From him, I got my determination and the courage to make my dreams come true.
I want to thank my loving husband Carmelo for his infinite patience, love and understanding during these years. I owe my greatest love to my children, Maria, Giuseppe, Nicodemo and Rosaria who have always been the biggest and brightest light and the greatest gifts in my life. I also express my thanks to Juuso and Reetta, who are now part of our family.
This study was financially supported by the University of Eastern Finland and the Finnish Foundation of Nurse Education. I owe my gratitude to them for their support.
Vantaanlaakso, October 2013 Kirsi Coco
XI
List of the original publications
This dissertation is based on the following original publications:
I Coco K, Tossavainen K, Jääskeläinen JE and Turunen H. Support for traumatic
brain injury patients' family members in neurosurgical nursing: a systematic
review. Journal of Neuroscience Nursing 43:337−348, 2011.
II Coco K, Tossavainen K, Jääskeläinen JE and Turunen H. Providing informational
support to the families of TBI patients: a survey for nursing staff in Finland.
Journal of British Neuroscience Nursing 8:337−345, 2012/2013.
III Coco K, Tossavainen K, Jääskeläinen JE and Turunen H. The provision of
emotional support to the families of traumatic brain injury patients: perspectives
of Finnish nurses. Journal of Clinical Nursing 22:1467−76, 2013.
IV Coco K, Tossavainen K, Jääskeläinen JE and Turunen H. Finnish nurses’ views of
support provided to families about traumatic brain injury patients’ daily
activities and care. Journal of Nursing Education and Practice 3:112−123, 2013.
The publications were adapted with the permission of the copyright owners.
XII
XIII
Contents
1 INTRODUCTION ........................................................................................................................... 1
2 SUPPORTING TBI PATIENTS’ FAMILY MEMBERS ............................................................ 4
2.1 DEFINITION, PREVALENCE, SYMPTOMS AND TREATMENT OF TBI ............................................................................ 4
2.2 COMPETENCE IN SUPPORTING TBI PATIENT’S FAMILY MEMBERS ............................................................................. 9
2.2.1 Supporting TBI patients’ family members ................................................................................................... 9
2.2.2 Competence in TBI patients’ nursing practice ........................................................................................... 10
2.2.3 Conclusion ...................................................................................................................................................... 12
3 PURPOSE OF THE STUDY, RESEARCH QUESTIONS AND DESIGN .......................... 14
4 DATA AND METHODS ............................................................................................................. 15
4.1 PHASE I: SYSTEMATIC REVIEW (PAPER I) ................................................................................................................ 15
4.2 PHASE II: SURVEY FOR NEUROSURGICAL NURSING STAFF (PAPERS II-IV) .............................................................. 16
5 RESULTS ........................................................................................................................................ 19
5.1 INFORMATIONAL SUPPORT IN SUPPORTING TBI PATIENTS’ FAMILY MEMBERS ...................................................... 19
5.2 EMOTIONAL SUPPORT IN SUPPORTING TBI PATIENTS’ FAMILY MEMBERS .............................................................. 21
5.3 PRACTICAL SUPPORT IN SUPPORTING TBI PATIENTS’ FAMILY MEMBERS................................................................ 22
5.4 SUMMARY OF THE RESULTS ...................................................................................................................................... 24
6 DISCUSSION ................................................................................................................................ 26
6.1 ETHICALITY OF THE STUDY ...................................................................................................................................... 26
6.2 RELIABILITY OF THE STUDY ...................................................................................................................................... 26
6.3 DISCUSSION .............................................................................................................................................................. 27
6.4 CONCLUSIONS AND RECOMMENDATIONS .............................................................................................................. 30
6.5 SUGGESTIONS FOR FURTHER RESEARCH .................................................................................................................. 31
7 REFERENCES
APPENDICES
XIV
XV
Abbreviations
TBI Traumatic Brain Injury
MMSE Mini-Mental State Examination
FM Family Member
VAS Visual Analog Scale
SD Standard Deviation
RAND36 Health Survey
GCS Glascow Coma Scale
PTA Post-Traumatic Amnesia
CT Computer Tomography
1 Introduction
In addition to broad basic knowledge, the nursing staff on neurosurgical wards needs special competence when providing comprehensive, up-to-date and safe care for patients with different levels and types of traumatic brain injury (TBI). Little research has been carried out regarding the basic and advanced competence needed to support the family members of TBI patients from the viewpoint of nursing staff (DiIorio et al. 2011).
In Finland it’s established that the elderly population is increasing and if services are to continue at the same level, it means that 80,000-120,000 new social and health-care workers will be needed by the year 2025. Otherwise the fact is that social and health care will struggle with the current lack of competent nurses. (Mäkitalo et al. 2010.)
The purpose of this study is to yield information about the competence needed by nursing staff to support family members of adult (>16 years) TBI patients. The study produces information about the contents of TBI patient nursing which can be utilized in, e.g., the orientation of new staff members. In addition, the results provide information for developing the quality of nursing and improving patients’ safety as well as bringing neurosurgical nursing staff’s needs for further training to the attention of nursing managers and training organizations.
The term “traumatic brain injury” (TBI) means a trauma affecting the head, often resulting in a loss of consciousness of any length of time, memory disturbances, and changes in the ability to function as well as neurological symptoms pointing to localized brain damage. In addition to weakened bodily functions, the patient often suffers from different sensomotoric, cognitive and emotional disturbances. (Öhman et al. 2008.) The patient’s symptoms cause suffering, fear and anxiety in the family members (Jumisko et al. 2005, 2009, Hawley & Joseph 2008, Calvete & deArroyabe 2012, Lefebvre & Levert 2012). Family members have informational needs during the different phases of the TBI patient’s therapeutic path – acute phase, subacute phase, convalence and rehabilitation – and the support provided by the nursing staff is meaningful and important in all these phases (Verhaeghe et al. 2005b, Lefebvre & Levert 2012).
All patients who are still unconscious on admission to hospital should initially be treated in the neurointensive care unit. For the first hours and days, the treatment is focused on maintaining the balance of the TBI patient’s central nervous and body systems (brain oxygenation and perfusion, intracranial pressure (ICP), electrolyte and fluid balance, temperature, etc.). Patients with severe TBI are at risk of suffering additional damage caused by intracranial and bodily events such as increased ICP, delayed intracranial haemorrhages, and perfusion deficits and brain ischaemia. The length of neurointensive care and overall neurosurgical hospital stay can usually be predicted by careful analysis of the condition on admission. (Öhman 2008, Olson et al. 2013.)
TBI patients constitute a notable patient group that increases with age but is still underdiagnosed in developed countries. There are some eight million TBI cases diagnosed globally each year. (Tagliaferri et al. 2006, Brain Trauma Foundation 2007, Koskinen & Alaranta 2008.) Koskinen and Alaranta (2008) estimated that in Finland some 21,000–31,000 people acquire TBI annually. There are some 100,000 people living with permanent symptoms after sequelae from brain injury in Finland. TBIs treated in hospitals result from traffic accidents, falling and violence. Half of all TBIs are acquired under the influence of alcohol. TBIs leading to death are most commonly caused by (a) traffic accidents among
2
the working age population or by (b) fall-related accidents among the elderly. Below 45 years of age TBIs occur more commonly in men and over 75 years in women. (Öhman et al. 2008.)
The guidance of a TBI patient’s family is an important part of the treatment as the changes in the patient’s behaviour and his or her emotional disturbances are particularly difficult to realize and cope with by the TBI patient (Calvete & deArroyabe 2012). Family members should learn ways to give feedback on the patient’s changed and difficult behavior. (Vanderploeg et al. 2007, Berry et al. 2012.) After suffering a TBI, the patient as a family member is not the same as he or she used to be, and as the TBI patient’s ability to function and behaviour change, so do their relationships (Wongvatunyu & Porter 2005). On the other hand, sometimes the changes triggered by the TBI can be positive from the family members’ viewpoint (Tenovuo 2010).
A few studies have previously examined the informational needs and coping of TBI patients’ family members during the acute phase in the neurointensive care unit and during the rehabilitation after the injury to their loved one (Verhaeghe 2005a, Jumisko et al. 2007, Rotondi et al. 2007, Lefebvre et al. 2008, Verhaeghe et al. 2010a, 2010b, Lefebvre & Levert 2012) as well as nursing staff’s experiences upon facing TBI patients’ family members (Lefebvre & Levert 2006, Yetman 2008, Roscigno et al. 2013). Rotondi (2007) and co-workers stated that family members need informational support concerning TBI and its consequences as well as emotional support to alleviate the stress and loneliness. Furthermore, family members need practical support to deal with financial matters and other daily problems (Calvete & deArroyabe 2012). Previous studies have been primarily qualitative, and the sample sizes in quantitative studies have been rather small to draw comprehensive conclusions.
In the present study, the literature searches were made for peer-reviewed publications in the CINAHL, Cochrane, CSA, ISI, Medic, PubMed and PsycINFO databases, using the search terms ”family”, ”relatives”, ”sibling”, ” next of kin”, ”significant other”, ”brain injury”, ”head trauma”, ”nurs*”, ”nurses” and their combinations for the years 2004-2010 and updated for 2011-2013.
In Finland, supporting family members have been studied in relation to several different patient groups: brain circulatory disturbances; coronary artery bypass surgery; multiple traumas; elderly patients in long-term institutional care; stoma surgery; and prostate cancer. Based on these studies, the support the family members receive from nurses includes being informed about the illness, the patient’s daily care, information on how family members can be involved in the patient’s care, guiding family members how to use alternative techniques, building a confidential rapport, encouragement, informational and emotional support through interaction as well as being supported in decision-making. (Nuutinen & Raatikainen 2005, Coco et al. 2007, Koivula et al. 2007, Nevalainen et al. 2007, Kaila 2009, Mattila et al. 2009, Harju et al. 2011, Liimatainen et al. 2012.)
Concepts essential to this study include the TBI patient, family members, support, and competence. TBI means structural and/or functional damage to the brain from external energy caused by, e.g., a fall or getting hit by an object. Except in very mild brain injury, TBI is accompanied by a loss of consciousness or at least a memory loss, and often by other symptoms indicating brain dysfunction (e.g., disorientation), and increasingly demonstration of brain damage, depending on the accuracy and methodology of neuroimaging. (Öhman et al. 2008, Falk 2012.) A family member means a person whom the patient has defined to be a part of the family and of whom the term “family member” is used (Åstedt-Kurki et al. 2008). Supporting family members have been defined in several ways (Koivula et al. 2007, Kaila 2009, Mattila et al. 2009). Finfgeld-Connett (2005,
3
2007) has defined supporting the patient and family members in the following way: an advocative interpersonal process that is centred on the reciprocal exchange of information and that is context-specific. In this study, the supporting of TBI patients’ family members is divided into informational, emotional and practical support (Coco et al. 2011). Nursing staff use different nursing interventions to support TBI patients’ family members. Here, the nursing interventions include giving information, explaining the reasoning behind the TBI patient’s care, and listening and encouraging as well as guiding family members in facing the TBI patient who is suffering from different trauma-induced symptoms and deficits. The competence of nursing staff has also been defined in diverse ways without any unanimous definition of the concept. Meretoja et al. (2004) defined competence as follows: competence integrates the cognitive, affective and psychomotor domains in nursing practice. According to Defloor et al. (2006), emergency and difficult situations require a different level of competence to that offered by the basic nursing education. In the model developed in the NeuroBlend project, neuronursing competence is divided into acute, rehabilitation and palliative nursing (van der Woert et al. 2007). In this study, competence is defined as a basic (achieved during education) or an advanced level (achieved with work experience in the current work unit) of expertise according to the needs of the patient.
4
2 Supporting TBI Patients’ Family Members
2.1 DEFINITION, PREVALENCE, SYMPTOMS AND TREATMENT OF TBI
Definition of TBI TBI means structural and/or functional damage to the brain from external energy caused by, e.g., a fall or getting hit by an object. Except in very mild brain injury, TBI is accompanied by a loss of consciousness or at least a period of memory loss, and may include other symptoms indicating brain dysfunction (e.g., disorientation) and increasingly demonstration of brain damage, depending on the accuracy and methodology of neuroimaging. Any one of these findings is a sufficient reason for considering the possibility of TBI. (Öhman et al. 2008.) Prevalence of TBI TBI patients constitute a notable patient group as nearly eight million TBIs are diagnosed globally each year (Koskinen & Alaranta 2008, Öhman et al. 2008, Thompson et al. 2009). In the United States, an estimated 1.7 million people sustain a TBI annually. Of those, 52,000 die, 275,000 are hospitalized, and 1.365 million are treated in emergency departments (Faul et al. 2010). In Finland, the prevalence of TBI is approximately 101/100,000, and 59% are men. In addition, an estimated 100,000 people have been left with permanent sequelae of TBI. (Koskinen & Alaranta 2008.) Symptoms of TBI and methods to alleviate them TBI can cause different kinds of physical, cognitive and emotional symptoms (Table 1). Physical symptoms Regarding physical symptoms, about a third of TBI patients suffer from long-term headaches (Öhman 2008, Bryan & Hernandez 2011, Falk 2012). Analgesic drugs that increase the risk of haemorrhage, such as most anti-inflammatory drugs, should not be used during the initial days. Drugs affecting the central nervous system are avoided as well. The abnormal fatigue caused by TBI is not alleviated by sleeping, and it does not feel like normal, healthy tiredness that one would experience following a brisk physical strain. It feels like comprehensive fatigue and can be likened to tiredness caused by burnout or severe depression. On some days the ability to function may be quite good but on others it might feel like getting out of bed is too much of an ordeal. For many, fatigue is the symptom with the most adverse effects on the quality of everyday life. (Cantor et al. 2008, Falk 2012.) If the fatigue is connected to sleeping disturbance, the primary task is to examine the reasons behind the disturbance and treat them. An increased need of sleep often comes with the fatigue. In general, significant limitations in physical abilities are rather unusual, depending, though, on the severity and type of TBI as well as the presence of other injuries in the head and body. If physical limitations occur, they must be addressed by guidance from a physiotherapist during the rehabilitation process. The guidance should have been initiated already during the initial hospital stay. The need for physiotherapy is also caused by other injuries
5
acquired in the accident. (Bland et al. 2011.) Guidance from a physiotherapist is also necessary in balance disturbances, particularly if the disturbances seem to persist with a further risk of falling down. Dizziness is preferably treated by getting the patient used to moving around rather than by drugs. (Öhman et al. 2008, Tenovuo 2010, Falk 2012, Murphy & Carmine 2012.) Cognitive symptoms Cognitive symptoms include concentration problems, memory problems and verbal problems together with unawareness of the symptoms. Former objects of interest are not interesting anymore, noise is more distracting than usual, and reading a book may feel too straining. Concentration problems often coexist with fatigue. Therefore, alleviating fatigue usually enhances concentration as well. TBI patients may suffer from memory problems and gaps, and they may have trouble finding words. Memory problems involve remembering new things, while the things before the accident are remembered as before. Objects get lost and even important things may be forgotten, and the TBI patient may repeat the same things several times. Weakness in short-term memory usually comes with learning difficulties. It is often hard to find an effective way to treat memory problems. (Öhman et al. 2008, Sigurdardottir et al. 2009, Clinical Practice Guideline 2009, Falk 2012.) TBI does not often cause severe verbal problems such as difficulty in speaking. However, mild language symptoms which may hinder communication with others in different situations are fairly usual. A speech therapist with knowledge of TBI sequelae can give guidance on how to deal with the symptoms. The changes in communication skills have the most significant effect on relationships. TBI patients may talk fluently but still have difficulties in expressing themselves in a prompt and understandable manner. Their ability to interpret others’ communication often deteriorates as well. (Öhman et al. 2008, Tenovuo 2010.) Unawareness of symptoms is a common remaining symptom of TBI (Kervik & Kaemingk 2005, Vanderploeg et al. 2007). The TBI patient then has difficulty, especially at the beginning, in noticing the changes in themselves and their ability to function, particularly their behavioural symptoms. The patient is usually quite well aware of memory problems and fatigue, but the lack of initiative and concentration problems are harder to be aware of. In most cases the awareness of symptoms improves over time, and it is common that in significant injuries the patient only starts to really realize what has happened a year after the TBI. Some patients may deny their symptoms, which can be hard to distinguish from unawareness of symptoms. (Öhman et al. 2008, Clinical Practice Guideline 2009, Tenovuo 2010.) In order to get on with everyday life, an ability to adapt to the changes brought by the TBI is usually required from the patients’ family members as well (Jaffee et al. 2009). Many TBI patients will face the fact that outsiders do not understand the inability of an entirely healthy-looking, often young, person to work and take care of their own life (Lindstam 2012).
Lack of initiative is a symptom that both the TBI patients themselves and particularly their family members often have difficulty in understanding and accepting. Others may mistake TBI patients for simply being lazy. (Norrie et al. 2010.) The lack of initiative may apply to things that normally would be nice and bring satisfaction. In addition even necessary things are left undone or at the least put off until the last minute, even if the patient was very active and organized before the injury. Lack of initiative often appears very troublesome to both the TBI patient and the family members. Others’ aid to get things started often helps. (Comper et al. 2005.)
If the TBI leads to slow functioning, more time has to be set aside for everything than previously, and doing things in a rush should be avoided. A TBI patient often has difficulty in understanding the passing of time. Things with multiple stages are best planned well
6
ahead and carried out one stage at a time. Things familiar from old can usually be done if they always happen in the same way. The slightest change may break the whole process if TBI has caused deterioration of planning skills. Slowness of functioning does not always show on the surface, but the patient feels that thinking and acting do not progress at the same pace as before. Family members are the best observers to find out and quantify the symptoms. Slowness can be seen in the patient’s way of moving and appearance – as if the patient had aged rapidly all of a sudden. (Öhman et al. 2008, Clinical Practice Guideline 2009, Tenovuo 2010, Falk 2012.) Table 1. Symptoms caused by TBI (Öhman et al. 2008).
Physical symptoms Cognitive symptoms Emotional symptoms
Headache Attention problems Depression and anxiety Dizziness
Nausea
Concentration problems
Being easily distracted
Impulsiveness, having a quick
temper
Fatigue and sleeping problems
Impaired memory and ability to learn
Personal characteristics being flattened or emphasized
Balance and coordination problems Disturbances of fine motor coordination
Dystonia Compulsive movements Parkinsonism Trembling
Perseveration Difficulty in verbal and non-verbal communication
Unawareness of symptoms
Sensitivity to stimuli Concretization or childlikeness of thinking Lack of judgment Difficulty in understanding the emotional content in speech Mild difficulty in finding words
Discursive speech
Emotional symptoms Emotional symptoms include aggressiveness and a quick temper. Changes in a TBI patient’s behaviour or emotional life are often the most difficult consequence from the family members’ viewpoint (Kneafsay & Gawthorpe 2004, Verhaeghe et al. 2005b, Wells et al. 2005, Clark et al. 2009). The changes in behaviour and emotional life are confusing also for the patients themselves, and they often lead to loss of self-image (Sinnakaruppan et al. 2005, Wongvatunyu & Porter 2005, Vanderploeg et al. 2007). It is entirely possible, however, that the patient’s personality and behaviour stay just as they were before, even if other distinct symptoms remain after the injury (Öhman et al. 2008). Changes in behaviour include increased irritability and a quick temper. A previously gentle character may become easily angered and unkind verbally to others. A quick temper is often accompanied by aggressiveness which fortunately usually stays at the verbal stage. On the other hand, the change can occur in the completely opposite direction, so that the person becomes more even-tempered and calm than before. (Tenovuo 2010.)
Mood swings from sadness to happiness can occur very rapidly even without an obvious reason. Learning how to manage the irritability, quick temper and aggressiveness is important in order for the TBI patient to avoid situations where they cannot keep their aggressions under control. Family members are often relieved by the fact that these kinds of
7
changes are a part of normal TBI symptoms. (Sinnakaruppan et al. 2005, Knapp et al. 2013.) The rapid swings in emotional life and mood can also bewilder TBI patients and their family members. Quick temper and drastic mood swings can be alleviated with medications if the symptoms are very inconvenient. (Öhman et al. 2008, Clinical Practice Guideline 2009, Tenovuo 2010.) Other common symptoms Other common symptoms remaining after TBI include decreased alcohol tolerance, difficulty with behaving appropriately in different situations, changes in appetite and sexual functioning, and difficulty with understanding non-verbal communication. Difficulty with understanding non-verbal communication can complicate relationships as the interpretation of tones, facial expressions and gestures does not work like before. Further symptoms include impairment or loss of the sense of smell, mild vision disorders, disturbances of sleeping patterns, and epilepsy. (Öhman et al. 2008, Clinical Practice Guideline 2009, Tenovuo 2010.)
Classification of TBI The severity of TBI is often classified using three variables: the Glasgow Coma Score (3-15) on admission; length of unconsciousness; length of post-traumatic memory loss. The assessment is importantly modified by the presence or absence of signs of trauma in the CT scans and, much more sensitively, in ordinary MR imaging or with more specific MRI sequences such as iron-sensitive MRI (sensitive to small haemorrhages not seen in CT scans) and diffusion tensor MRI (sensitive to injuries to white matter tract systems not seen in ordinary MR scans). (Öhman et al. 2008.) (Table 2).
In Finland, mild TBIs are still treated in basic health care while the treatment of moderate and severe TBIs is now centred in the neurosurgical units of the five university hospitals. In mild TBIs, 90% of all TBIs, the loss of consciousness and the period of post-traumatic amnesia (memory loss) is short. Findings in the initial CT scans are absent and the injury does not require neurointensive care or neurosurgical procedures. The majority of mild TBI sufferers recover fully, usually within a few days or weeks, but some 15% are left with long-term or even permanent symptoms. (Öhman et al. 2008.)
A moderate head injury is defined as the loss of consciousness for between 15 minutes and six hours, and/or a period of post-traumatic amnesia of up to 24 hours. The severity of the TBI is also considered moderate if abnormal intracranial findings caused by the injury can be detected in the brain scans. Most patients with moderate TBI are left with permanent symptoms (Table 1), although it is also possible to recover fully. (Öhman et al. 2008, Liimatainen et al. 2012.) (Table 2).
Patients with severe TBIs remain unconscious for at least half an hour after the injury or their memory loss lasts more than a week. TBIs requiring neurosurgical treatment are also considered severe. Patients with severe TBIs are nearly always left with permanent symptoms, although full recovery is sometimes possible. If the patient’s unconsciousness lasts for more than a week or they have a memory loss spanning more than a month, the TBI is considered very severe. Practically no patients with an injury of this severity make a full recovery, and a small proportion of the patients remain permanently unconscious. Patients with severe TBI are treated in the neurointensive care unit from where they are transferred to the neurosurgical ward for follow-up treatment. From the ward they are transferred to a central hospital, health centre ward, or rehabilitation facility. (Öhman et al. 2008.) (Table2).
Table
2.
Cla
ssific
ation o
f TBI
(Öhm
an e
t al. 2
008).
Very m
ild
M
ild
M
od
erate
S
evere
Very s
evere
All o
f th
e follow
ing
G
CS s
core
of 15 h
alf a
n
hour
aft
er
the inju
ry
and t
hro
ughout
monitoring
N
o loss o
f conscio
usness,
dura
tion o
f am
nesia
le
ss t
han 1
0 m
inute
s
N
o c
linic
al neuro
logic
al
findin
gs indic
ating
bra
in inju
ry
N
o r
ecent
fractu
re o
f th
e s
kull o
r base o
f th
e
skull
N
o fin
din
gs c
aused b
y
inju
ry in b
rain
CT o
r M
RI
scans
N
o n
urs
ing p
rocedure
s
necessitate
d b
y t
he
bra
in inju
ry
All o
f th
e follow
ing
G
CS s
core
of 13–15
half a
n h
our
aft
er
the
inju
ry a
nd
thro
ughout
monitoring
M
axim
um
length
of
PTA 2
4 h
ours
Maxim
um
length
of
unconscio
usness 3
0
min
ute
s
N
o intr
acra
nia
l
findin
gs c
aused b
y
inju
ry in b
rain
CT o
r M
RI
scans
N
o n
euro
surg
ical
pro
cedure
s
necessitate
d b
y t
he
bra
in inju
ry
One o
f th
e follow
ing a
nd n
one
of th
e fin
din
gs b
elo
ngin
g t
o a
severe
inju
ry
G
CS s
core
of 9–12
half a
n h
our
aft
er
the
inju
ry o
r at
som
e
poin
t la
ter
Length
of PTA m
ore
th
an 2
4 h
ours
but
less t
han s
even d
ays
In
tracra
nia
l findin
gs
caused b
y inju
ry in
bra
in C
T o
r M
RI
scans
Any o
f th
e follow
ing
G
CS s
core
of
maxim
um
of 8
half a
n h
our
aft
er
the inju
ry
or
at
som
e p
oin
t la
ter
Length
of PTA
more
than s
even
days
In
tracra
nia
l anom
aly
requir
ing
surg
ical
treatm
ent
Either
of th
e follow
ing
Length
of
unconscio
usness
more
than s
even
days
Length
of PTA m
ore
th
an four
weeks
GC
S =
Gla
sco
w C
om
a Sc
ale;
PTA
= P
ost
Tra
um
atic
Am
nes
ia; C
T =
Co
mp
ute
r To
mo
grap
hy
8
9
2.2 COMPETENCE IN SUPPORTING TBI PATIENT’S FAMILY MEMBERS
2.2.1 Supporting TBI patients’ family members Nursing staff use different nursing interventions to support TBI patients’ family members. Nursing interventions in this context mean providing information, explaining the reasoning behind the TBI patient’s treatment, listening and encouraging, and guiding family members how to cope the TBI patient, who is suffering from different symptoms and deficits caused by the TBI. Traumatic brain injuries happen suddenly and unexpectedly. That is why TBI patients’ family members often have primarily informational needs. Family members want information about the symptoms caused by TBI such as physical symptoms, including headache, vision disorders and difficulties in moving (Sinnakaruppan et al. 2005, McCabe et al. 2007, Verhaeghe et al. 2007, Arango-Lasprilla et al. 2010, Falk 2012, Lefebvre & Levert 2012), or disorientation after TBI as well as difficulties in producing and understanding verbal communication (Winstanley et al. 2006, Rotondi et al. 2007). TBI patients’ condition is often unstable, which complicates informing family members (Verhaeghe et al. 2007, Öhman et al. 2008, Roscigno et al. 2013). The monitoring of vital signs is very challenging (Lane-Brown & Tate 2009) as TBI causes different cognitive and emotional disturbances which are amplified by the pains caused by the injury (Gallagher et al. 2006). According to previous studies, family members found that they were not given sufficient information about potential problems and therefore were not able to prepare themselves for the problems (Lefebvre et al. 2008, Kontos et al. 2012). For instance, family members felt that it would have been good to have enough information in order to prepare themselves to face the patient, particularly when the TBI had caused impulsiveness or aggressiveness in the patient (Wells et al. 2005, Wongvatunyu & Porter 2005, Arango-Lasprilla et al. 2010, Berry et al. 2012).
Nursing staff provide emotional support for TBI patients’ family members by consoling, which alleviates uncertainty, anxiety, hopelessness and depression. Family members’ knowing that help is available if needed, sharing their concerns with someone and getting encouragement helps them to cope. Emotional support also entails listening and talking. (Finfgeld-Connett 2005, Murray et al. 2006, Roscigno et al. 2013.) The changes in TBI patients’ personality and behaviour cause stress to family members. According to family members, TBI patients are more aggressive, anxious, dependent, depressed and irritable, and had a worse memory after the injury than before it. (Hora & de Sousa 2005, Norup et al. 2010.) Pryor (2004) noted that environmental factors including disturbing noise, lack of privacy or choice, inexperienced staff, patients talking to family members, family’s too high expectations, and treating the patient as a “child” cause aggressiveness. This requires nursing staff to have the skill to interpret the hints that predict violent behaviour (Pryor 2005, 2006).
Nursing staff have to take into account the effects of the injury on the whole family when providing emotional support for family members (Verhaeghe et al. 2005b). By keeping up hope, nursing staff help TBI patients’ family members to cope with their difficult situation (Jumisko et al. 2007, Verhaeghe et al. 2007, Roscigno et al. 2013). On the other hand, family members wished that they were told when there was no hope left (Bond et al. 2003, Verhaeghe et al. 2007). It is important for family members to be able to talk about their feelings of guilt and about what has happened as talking helps them to cope with their difficult situation (Lefebvre et al. 2007). However, only a quarter of nursing staff evaluate that they inform family members about the effects of the injury on the family’s life (Coco et al. 2007). TBI patients’ family members also felt that they received too little preparation for
10
the future and experienced uncertainty and fear as understanding the situation was difficult for them (Rotondi et al. 2007).
Practical support means, e.g., guiding family members in the patient’s physical care, childcare services, help with transportation, help with household management as well as providing guidance in financial matters (Finfgeld-Connett 2005). In the acute phase it was extremely important for family members to be able to be present and participate in care, as they feared something would happen to their loved one while they were away (Bond et al. 2003, Driver 2005, Lam & Beaulieu 2004, Livesay et al. 2005, Verhaeghe et al. 2007, Sapountzi-Krepia et al. 2008, Lefebvre & Levert 2012). Family members’ participation in the patient’s care and nursing practices such as visiting hours vary in different cultures (Anzoletti et al. 2008, Sapountzi-Krepia et al. 2008). According to Livesay et al. (2005), nursing staff explained that limitations in visiting hours were important in order to ensure family members get some rest. TBI patients’ family members need support from nursing staff when assisting the TBI patient in daily activities, as disturbances in functioning and behaviour often exist after the injury. TBI may cause the patient’s functioning to get stuck, e.g., while eating. Being easily distracted, quick-tempered and sensitive to stimuli affects the patient’s ability to dress themselves independently. Unawareness of symptoms prevents the patient from understanding the limitations in movement caused by hemiparesis. Problems with memory and learning impede the using of aids designed for walking and moving. (Öhman et al. 2008.) The danger of TBI patients becoming isolated is increased by the combination of worsened initiative and social skills with unawareness of symptoms (Kervick & Kaemingk 2005). Family members need information about the possibility of having a personal assistant, activities of brain injury organizations, organization of work trials and services of rehabilitation outpatient clinics, as the brain injury patients often cannot look after their benefits or health (Leith et al. 2004, Winstanley et al. 2006, Öhman et al. 2008, Jaffee et al. 2009, Kontos et al. 2012, Lefebvre & Levert 2012, Calvete & deArroyabe 2012).
In summary, it can be stated that supporting TBI patients’ family members is initiated by their needs and entails broad and multifaceted competence from nursing staff. At the beginning of treatment, family members particularly have informational needs related to the TBI patient’s care and prognosis, which they try to use to maintain hope. Family members also need encouragement and listening to in their difficult situation. Furthermore, they need guidance from nursing staff on how to participate in the TBI patient’s care and how to acquire the necessary services to promote the rehabilitation of their loved one.
2.2.2 Competence in TBI patients’ nursing practice Competence integrates the cognitive, affective and psychomotor domains in nursing practice (Meretoja et al. 2004). According to Defloor et al. (2006), emergency and difficult situations require more competences than those offered by basic nursing education. The model developed in the NeuroBlend project divides neuronursing competence into acute, rehabilitation and palliative nursing. These domains of nursing practice are not dependent on the nursing unit, as nursing staff may have to solve TBI patients’ sudden problems, and on the other hand, the TBI patients’ rehabilitation may have already begun on the first day of treatment (van der Woert et al. 2007). Furthermore, nursing staff in the intensive care unit may have to carry out palliative nursing (Thompson ym. 2006, Calvin ym. 2007, Verhaeghe et al. 2010a, 2010b). The aim of rehabilitation neuronursing is that the patient relearns how to communicate, move and function as normally as possible. Palliative care caters to the patient’s physical, psychological, social and spiritual needs. (van der Woert et al. 2007.) In this study, the competence in nursing TBI patients and supporting their family members is divided into informational, emotional and practical domains, in all of which nursing staff need basic and advanced competence.
When the patient’s situation is acute, nursing staff carry out suitable and appropriate treatment together with physicians and a multidisciplinary team, according to the practices
11
of the organization. Nursing staff have to be competent to monitor TBI patients’ condition so that declines in their state of health can be prevented. (Hickey 2009, Olson et al. 2013.) The aim of TBI patients’ acute nursing is to prevent the worsening of acute TBI by securing vital functions, treating complications like intracranial haematomas, and preventing complications like infections of an open injury (Celik 2004, Tasker et al. 2006, Öhman et al. 2008). Primary brain injury is irreversible and causes mechanical tissue damage, swelling, blood congestion and, in addition brain circulation deficiency which may cause the development of secondary brain injuries (Öhman et al. 2008). Therefore, in the case of acute TBI patients, nursing staff need information about the patient’s vital functions such as their circulation, respiration and body temperature. Nursing staff have to be able to gather information about TBI patients’ level of consciousness using reliable instruments, pupil size, and symptoms related to raised intracranial pressure as well as indicators of epileptic seizures. (Barker 2002, Kneafsey & Gawthorpe 2004, Olson et al. 2013.) Nursing staff have a significant role in the success of TBI patients’ fluid replacement therapy (Cook et al. 2004). It is important that nursing staff gather information from both the TBI patient and the family members in order to get a comprehensive picture of the TBI patient’s condition. Particularly in the case of the patient suffering from unawareness of their symptoms, family members are best to describe the patient’s condition before the injury. (Friedman et al. 2003, Öhman et al. 2008, Hickey 2009.) On the other hand, Verhaeghe et al. (2007) noted that family members cannot necessarily understand the meaning of specific parameters such as monitoring of intracranial pressure. Nursing staff must be able to support TBI patients and their family members in their grief (Marwit & Kaye 2006). In addition, nursing staff guide TBI patients and their family members in rapidly changing situations and after bad news has been given to them (Bay & McLean 2007, Verhaeghe et al. 2007, Roscigno et al. 2013).
In the rehabilitation nursing of TBI patients, nursing staff, together with a multidisciplinary team, have to find out the TBI patients’ needs and the disturbances and injuries that complicate their daily functioning. Rehabilitation depends on the severity of the injury, the deficiency symptoms (paralysis, disturbances of verbal and other mental functions, incontinence), the patient’s age and ability to function prior to the illness, demands of work for the working age patients, social network and the patient’s own motivation (Brain Association 2013). Good interaction between TBI patients and nursing staff promotes rehabilitation (Burton & Gibson 2005). Therefore, nursing staff are required to have particularly good interaction skills so that they are able to cope with, e.g., disorientated and aggressive patients (Pryor 2004). It is very important for TBI patients’ rehabilitation that nursing staff allow the patient to have enough time to express themselves and that nursing staff listen to both the patient and their family members in a professional manner (Lindstam 2012, Kontos et al. 2012). Nursing staff gather information about TBI patients’ moving, cognitive state, behaviour and ability to cope with daily functions. Information is gathered from the TBI patients if their condition allows it. TBI patients’ treatment needs are assessed together with a multidisciplinary team and the potential changes in the patients’ sensomotor, cognitive and emotional disturbances are anticipated. (Hickey 2009.) Family members play a central role in supporting the TBI patient to cope at home (O’Connell et al. 2003, Kneafsey & Gawthorpe 2004, Kontos et al. 2012). Nursing staff are therefore in a significant position in guiding the TBI patients and their family members, e.g., at discharge from hospital and after it (Kneafsey & Gawthorpe 2004, Burton & Gibson 2005, Falk et al. 2008).
In rehabilitation nursing, nursing staff carry out interventions related to the patient’s sensomotor, cognitive and emotional state (Hickey 2009). Nursing staff support and guide the patient in relearning how to move, look after themselves, engage in hobbies and interact with others. The patient and family members are also supported to cope financially and their social networks are sorted out. It is important to prevent different complications, e.g., shoulder pain (Leung et al. 2007), pneumonia or contractures (Forsbom et al. 2001, Seneviratne et al. 2005, van der Woert et al. 2007, Murphy & Carmine 2012). Receiving
12
support has, in addition, been noted to be related to how TBI patients and their family members cope later on (Smith et al. 2004, Burton & Gibbon 2005, Calvete & deArroyabe 2012). The co-operation of the treatment team and the results of rehabilitation are recorded in a rehabilitation plan. In TBI patients’ rehabilitation nursing it is also important that, among other things, the effects of the planned rehabilitation are recorded in the rehabilitation plan (Pitzén et al. 2012).
Palliative nursing of TBI patients is the comprehensive care given to patients with life-threatening or fatal injuries and their families, where the alleviation of pain and other symptoms and the processing of psychological, social and spiritual problems are essential. Nursing staff have to recognize problems related to the patient’s care and the causes behind them, as well as the patient’s symptoms, by monitoring the TBI patient’s pain, changes in vital functions, swallowing, ability to move, neurological and cognitive functions, and mental state, e.g., grief and hopelessness. (Thompson et al. 2006, van der Woert et al. 2007.) Nursing staff use valid instruments, e.g., the Rand-36 instrument (Tomberg et al. 2007), to assess the TBI patients’ and their family members’ quality of life. Nursing staff can, in addition, utilize pain scales (Ofek & Defrin 2007) or the MMSE test (Özbudak et al. 2006). Nursing is based on comprehensive information gathered from the TBI patient, family members, other professionals and the nursing staff themselves. It is also important to gather information about the TBI patient’s respiration, elimination and nutritional state. The care plan is based on the family’s viewpoint (Forsbom et al. 2001, Thompson et al. 2006, van der Woert et al. 2007). It is essential that the patient and family participate in planning the patient’s care. The aim of the interventions is to console the patient and the family, and promote and maintain the patient’s dignity and quality of life. Nursing staff must recognize the factors that may cause suffering to the TBI patient and their family. (Thompson et al. 2006, Roscigno et al. 2013.) The care plan takes into account the patient’s needs both in the short term, e.g., pain relief, and in the long term, e.g., needs related to the quality of life. It is important that nursing staff are able to coordinate the TBI patient’s care systematically and to co-operate in a multidisciplinary team. Nursing staff coordinate the transfer of a TBI patient from the ward to a nursing home or a rehabilitation centre. (Wideheim et al. 2002, Thompson et al. 2006, van der Woert et al. 2007, Lefebvre & Levert 2012.)
Neuronurses have to take part in discussions concerning the development of TBI patients’ nursing practice. Furthermore, they have to recognize development needs in TBI patients’ nursing. The law on health-care professionals requires neuronurses to maintain and develop their professional skills and be familiar with the laws concerned with nursing practice (559/1994). In order for neuronursing staff to achieve professional growth, they have to be able to assess their professional competence continuously (cf. Heikkilä et al. 2007). TBI patients’ neuronursing practices should be based on scientific research and knowledge from other branches of science. Nursing staff have to recognize the efficient, safe and effective practices in TBI patients’ nursing. It is important that nursing staff update their knowledge of new research results and nursing practices. (Virta-Helenius et al. 2004 van der Woert et al. 2007, Olson et al. 2013.) Neuronursing staff evaluates their competence in utilizing research information and taking part in developmental activities as moderate (Mäkipeura et al. 2007). The development of neuronursing practice by utilizing research information requires neuronursing staff to have the ability to assess the reliability of research (cf. Heikkilä et al. 2007).
2.2.3 Conclusion In Finland it’s evaluated that 80,000-120,000 new social and health-care workers will be needed by the year 2025. Social and health care is struggling already with a lack of competent nurses. (Mäkitalo et al. 2010.) Informal care is already common in many countries, where families provide care in hospitals. Health education and informational
13
needs are important factors for family members which are often underestimated by nursing staff (Lavdaniti et al. 2011).
In this study the supporting of TBI family members has three dimensions: informational, emotional and practical. TBI patients’ family members need information about care, treatment and prognosis (Verhaeghe et al. 2005a, 2005b). For TBI patients’ family members coping with the consolation is essential because it alleviates uncertainty, anxiety, hopelessness and depression (Chronister et al. 2010, Keenan & Joseph 2010, Berry et al. 2012). TBI patients’ family members’ involvement promotes patients’ coping, thus it is crucial that nursing staff teach how to participate in care and rehabilitation (Winstanley et al. 2006, McCabe et al. 2007).
The competence required in TBI patients’ treatment can be examined from the viewpoint of acute, rehabilitation and palliative nursing according to the NeuroBlend model. The model is based on the supposition that, e.g., the rehabilitation of TBI patients begins in the neurointensive care unit straight after the injury and, on the other hand, TBI patients receiving palliative care may only suffer from symptoms that require acute treatment. TBI patients’ nursing is always multidisciplinary. The condition of a TBI patient can also be so severe that they receive palliative care straight after the injury. (van der Woert et al. 2007.)
Supporting TBI patients’ family members and the required basic and advanced competence from nursing staff’s viewpoint has previously scarcely been studied. Research concerning family members’ needs after their loved one has suffered a TBI exists, but the studies are mostly qualitative and the sample sizes in quantitative studies are small. There is a lack of previous research on supporting family members on the ward straight after the TBI patient has been transferred from the intensive care unit.
14
3 Purpose of the Study, Research Questions and Design
The purpose of the study was to examine what supporting TBI patients’ family members entails and how often nursing staff provide support for TBI patients’ family members as well as what kind of nursing competence (basic/advanced) is needed to support TBI patients’ family members on neurosurgical wards. In addition, the aim was to examine the relationship between background variables and how often nursing staff provided support for TBI patients’ family members and what kind of competence is required. The research questions were:
Based on previous research, what does supporting TBI patients’ family members entail? (Original publication I).
According to the nursing staff’s evaluations, how often do they provide support (informational, emotional, practical) for TBI patients’ family members? (Original publications II-IV).
Are the background variables (age, education, work experience as a nursing staff member, work experience in the current work unit) of nursing staff related to how often they provide support for TBI patients’ family members? (Original publications II-IV).
According to the nursing staff’s evaluations, what kind of competence (basic/advanced) is needed to provide support (informational, emotional, practical) for TBI patients’ family members (Original publications II-IV).
Are the nursing staff’s background variables (age, education, work experience as a nursing staff member, work experience in the current work unit) related to how they evaluate the level of competence? (Original publications II-IV).
The study design is presented in Figure 1.
Figure 1. Study design.
PHASE I
(2008-2010)
Systematic
literature review
Support for TBI
patients’ family
members in nursing
PHASE II
(2010-2012)
Survey for neurosurgical nurses at university hospital Implementation of
Informational support Emotional support
Practical support
Competence needed to
implement nursing
interventions
Basic
Advanced
15
4 Data and Methods
4.1 PHASE I: SYSTEMATIC REVIEW (PAPER I)
Data A systematic literature review (2008-2010) was carried out in the first phase of the study in order to find out how previous research during the years 2004-2010 defines the supporting of TBI patients’ family members. The searches were made in the CINAHL, Cochrane, PsycINFO and Web of Science databases using the search terms ”family”, ”relatives”, ”sibling”, ”next of kin”, “significant other”, “traumatic brain injury”, “head trauma” and ”nurs*” (search term includes “nursing” and “nurse”). The search resulted in 195 studies, of which 22 were selected for the final data (Paper I: Figure 1, Appendix 1). Figure 2. Progression of the systematic review.
Results of electric
searches 195 references
Excluded based on
abstract (n = 68)
Exclusion criteria:
Less than two search
terms used
Dissertation or congress
report
Written in other
language than Finnish,
English, Italian, Swedish
Accepted based on full
text (n = 22)
The study corresponded
to the aim of rewiev
Accepted based on
abstract (n = 48)
Focused on adult TBI
patient/family
Accepted based on
article title (n = 116)
The title included at
least on of the search
terms
Excluded based on title
(n = 79)
Exclusion criteria focus
of children’s congenital
brain injury
Not peer rewieved
Excluded based full text
(n = 26)
Exclusion criteria:
The study did not
correspond to the aim
and context of the
review
The research article was
not available
16
Analysis of data In the study, the data from the systematic literature review were analysed using content analysis. The analysis was started by carefully reading all of the research articles, and keeping the study question in mind so that it was possible to gain a complete sense of the contents. Subsequently, the central results were set in tabular form and they were analysed. The data were then coded. After this, codes that included similar actions were grouped together into sub-categories and named accordingly. The original phrases picked from the articles were grouped according to the domains of support. Units of analysis (word, sentence, phrase) were then selected. The phrases were further grouped into their own categories based on their similarities and differences. After that, the original units of analysis were reduced by retaining their original meaning. Next, by combining subcategories with similar contents, categories were formulated. During the analysis, categories were identified and developed in terms of their properties and dimensions. The categories were named with terms describing the data. (Burns & Grove 2001, Cavanagh 1997, Elo & Kyngäs 2007). (Paper I: Tables 1-3).
4.2 PHASE II: SURVEY FOR NEUROSURGICAL NURSING STAFF (PAPERS II-IV)
Development of the questionnaire In the second phase of the study (2010) the questionnaire (Appendix 5) formed for this study was used to collect nursing staff’s perceptions about what kind of competence (basic/advanced) is required – and how often – by the supporting of TBI patients’ family members. The questionnaire included five questions relating to background information, 39 statements relating to informational support, 16 statements relating to emotional support and 29 statements relating to practical support. The statements were answered on a six-point Likert scale: 5 = always, 4 = often, 3 = occasionally, 2 = seldom, 1 = never and 0 = does not affect me. Whether the content of the statement required basic or advanced competence was evaluated on a two-point scale: 1 = basic competence and 2 = advanced competence. The questionnaire was based on previous research on providing support for TBI patients’ family members and the systematic literature review carried out in the first phase of the study. The questionnaire was also reviewed by a panel of experts in TBI patients’ care (two registered nurses, a practical nurse, a nurse director, an anaesthetist and a neurosurgeon). The panel of experts evaluated the content of the questionnaire and the suitability of the statements in relation to TBI patients’ care and supporting their family members. The experts stated that the questionnaire was comprehensive in content and proposed the removal of exact parameters related to, e.g., blood glucose values as well as the addition of the statement ”I maintain the hope of the family members of a TBI patient without giving false hope”. Further, two nursing staff members with extensive experience in treating TBI patients piloted the questionnaire (Appendix 5). They found that the statements were understandable and the questionnaire did not lack anything essential and was easy to answer. On the other hand, they noted that the number of statements was high, but as a comprehensive view of the phenomenon was wanted, the number of statements was not reduced (Figure 3).
17
Figure 3. Development of the questionnaire.
Sample The sample consisted of all nursing staff working on the neurosurgical wards (N = 6) at all university hospitals (N = 5) in Finland. The questionnaires were sent via contact persons to all nursing staff (N = 172) working on the neurosurgical wards (N = 6) in Finland. All registered nurses and practical nurses (licensed vocational nurses), together with assistant head nurses and head nurses, were invited to participate. The response rate was 67% (Papers II-IV). Analyses of the questionnaire data The data from the questionnaire were statistically analysed using SPSS statistical software 17. Descriptive statistics means and deviations were examined first. It was noted that the deviations varied. Next, factor analysis was carried out, with the value “0” left out of the analysis. The factor analysis was carried out using the principal component and principal axis method with Varimax rotation. For further analyses, the background variables age and education were reclassified (DeVellis 2012).
The factor analysis solutions relating to informational support were examined starting with 39 variables. The variables with loadings under 0.500 were omitted from the analysis one at a time. A total of 22 variables were included in the final factor analysis. The factor solution explained 64.5% of the total variance with respect to the informational support provided for TBI patients’ family members; the communalities ranged between 0.520 and 0.799. The informational support factor loadings ranged between 0.503 and 0.862. The factor solution of emotional support explained 56.8% of the total variance and the communalities varied between 0.316 and 0.605. The emotional support factor loadings ranged between 0.410 and 0.830. Altogether 16 variables were included in the factor analysis for emotional support. The factor solution of practical support explained altogether 59.7% of the total variance and the communalities were between 0.304 and 0.793. The practical support factor loadings varied between 0.421 and 0.858. There were a total of 28 statements relating to practical support provided for TBI patients’ family members (Burns & Grove 2001).
Nursing intervention sum variables were formed based on the factors. The Kolmogorov-Smirnov test was used to examine the distributions. The distributions were all normal. The relationships between the background variables and the nursing intervention sum variables were examined using one-way ANOVA, two-way ANOVA, MANOVA and linear regression. The results were evaluated using the p-value (p < 0.05). (Polit & Beck 2012.) In addition, the internal consistency of the questionnaire was evaluated by calculating Cronbach’s alpha coefficients for the mean sum variables related to the supporting of TBI patients’ family members (Burns & Grove 2001) (Table 4).
Research of existing
literature supporting TBI
patient’s FM
Planning and preparation of
questionnaire
Systematic literature review
Finalizing the
questionnaire
Team of experts’ panel Changes to questionnaire Pilot study
18
Percentage distributions of the nursing staff’s perceptions about the level of competence (basic/advanced) associated with nursing interventions were also examined. Finally, competence mean sum variables in respect of the nursing intervention sum variables were formed; the means varied from one (1 = basic competence) to two (2 = advanced competence). The relationships between the background variables and the competence mean sum variables were examined using one-way ANOVA, two-way ANOVA, MANOVA and linear regression. The results were evaluated using the p-value (p < 0.05) (Polit & Beck 2012). In addition, Pearson’s correlation was used for calculating whether there was a correlation between how often nursing staff provided support for TBI patients’ family members and how they determined the level of competence (basic/advanced) (Polit
& Beck 2012). The summary of data and analyses are presented in Table 3. Table 3. Survey study for neurosurgical nurses, data and analyses.
Study focus Data Data analysis
Nursing staff’s evaluations on supporting TBI patients’
family members
Survey n = 115
Percentages, means, standard deviations, Kolmogorov-Smirnov, factor
analysis, one-way Anova, two-way Anova, Manova, linear regression
Nursing staff’s evaluations on their competence to support TBI patients’ family members
Survey n =115
Percentages, means, standard deviations, one-way Anova, two-way Anova, Manova, linear regression
19
5 Results
The results of the study are presented in the following by combining the results of the systematic literature review (Paper I) and nurses’ evaluations of the implementation of informational, emotional and practical support and the competency needed to support TBI patients’ family members (Papers II-IV).
5.1 INFORMATIONAL SUPPORT IN SUPPORTING TBI PATIENTS’ FAMILY MEMBERS
As a result of the content analysis of the systematic literature review in the first phase of the study, four classes of informational support were formed: information about TBI patients’ symptoms, information about TBI patients’ treatment, quality of information and information about TBI patients’ prognosis (Figure 4). TBI patients’ symptoms vary from physical and cognitive symptoms to behaviour problems and they cause stress and anxiety for family members. Family members therefore need information about the symptoms caused by the injury. Family members want to be informed about the patient’s treatment and reassured that the patient receives the best possible care and that no injuries are left unnoticed. In addition, family members want to know about the patient’s medication. (Wongvatunyu & Porter 2005, McCabe et al. 2007, Arango-Lasprilla et al. 2010.) Regarding the quality of information, family members found that they did not always receive enough information in order to participate in making decisions about the patient’s appropriate treatment. Family members further criticized meetings with health-care professionals for their short duration and for the meetings not attending to family members’ current needs. Family members also wanted to have all information in written form. They felt that questions should be answered honestly and understandably. Family members wanted information about the consequences of TBI and the potential problems. (Verhaeghe et al. 2005b, Murray et al. 2006, Arango-Lasprilla et al. 2010.) (Paper I)
20
Figure 4. Informational support for TBI patients’ family members according to systematic review
(Coco et al. 2011).
The results of the survey for nursing staff on neurosurgical wards in the second phase of
the study showed that as a whole, nursing staff evaluated that they provided informational support for TBI patients’ family members fairly often (3.4, SD ±0.599). Nursing staff evaluated that they provided support for TBI patients’ family members most often by telling them about management of the symptoms caused by TBI (mean 3.7, SD ±0.738) and the evaluation of treatment efficacy (mean 3.7, SD ±0.742). On the other hand, they fairly seldom informed family members about vital signs monitoring (mean 3.3, SD ±0.792), control of intracranial pressure (3.3, SD ±0.938) and the prevention of secondary injuries (3.2, SD ±0.859).
According to the nursing staff’s evaluations, a basic level of competence was most needed in evaluating the efficacy of treatment (1.3, SD ±0.351) and vital signs monitoring (1.4, SD ±0.321). On the other hand, the nursing staff evaluated that control of intracranial pressure requires advanced competence (1.6, SD ±0.395).
Taking into consideration of the background variables, the nursing staff member’s age (p = 0.010), length of work experience as a nursing staff member (p = 0.004) and length of work experience in the current work unit (p = 0.002) were connected to how often they told TBI patients’ family members about vital signs monitoring. Nursing staff members with 11-20 years and 21 or more years of work experience in the current work unit most often told family members about the control of intracranial pressure. Practical nurses (p = 0.000) told family members least often about the management of symptoms caused by TBI. Education
INFO
RM
ATIO
NAL S
UPPO
RT
SUP
PO
RT
Information about
TBI patients’
symptoms
Information about
TBI patients’ care
The quality of
information
physical, cognitive, behavioural
problems
information about injuries and their
sequelae
education reduces FM stress
to be ensured TBI patient gets the
best possible care
need to understand medical care
concrete and written
enough accurate information
understable information
honesty
Information about
prognosis
information about rehabilitation
process
help to prepare for the worst
information about potential
consequences and problems
to be warned about po
21
was also connected to providing information about the efficacy of treatment, as registered nurses with a university of applied sciences education told family members about it most often (p = 0.007) (Paper II).
5.2 EMOTIONAL SUPPORT IN SUPPORTING TBI PATIENTS’ FAMILY MEMBERS
As a result of the content analysis of the systematic literature review in the first phase of the study, three classes of emotional support were formed: taking TBI patients’ family members’ feelings into account, caring and listening, and respecting family members (Figure 5). The changes in a TBI patient induced by the injury cause family members to have different feelings, like fear, anxiety, shame and guilt. Furthermore, the aggressiveness of a TBI patient caused suffering for family members (Wells et al. 2005). Family members found that some times doctors do not give any hope for the recovery of aTBI patient (Wongvatunyu & Porter 2005), and occasionally family members talked about feeling sadness similar to if their loved one had perished. Their loved one had not actually died, but the TBI had caused the patient’s personality to change so that family members did not recognize them as the same person any more. Receiving care and being listened to helped family members to cope with their difficult situation. Family members found it particularly important to discuss difficult topics, such as marital problems or feelings of shame, with nursing staff. (Winstanley et al. 2006, Charles et al. 2007, Keenan & Joseph 2010.) Family members primarily wanted TBI patients’ needs and wishes to be respected (Hart et al. 2007, Arango-Lasprilla et al. 2010). Nursing staff must take into account the different progression rates of family members’ grieving processes (Lefebvre et al. 2007). (Paper I)
Figure 5. Emotional support for TBI patients’ family members according to systematic review
(Coco et al. 2011).
EM
OTIO
NAL S
UPPO
RT Taking emotions
into account
Respecting
Caring and listening
grieve the loss of a person
share feelings
reassuring it is usual to have negative
feelings
conflicts with the personnel should be
avoided because they induce stress
taking opinions into account
concern of professional pessimism
reciprocal communication
holding on to hope
discuss with someone with a similar
experience
22
As a result of the survey in the second phase of the study, the mean sum variables of emotional support were formed: taking into account TBI patients’ family members’ individuality and respecting them, encouragement of TBI patients’ family members, supporting the ability of TBI patients’ family members to cope, creating a safe atmosphere, and dealing with difficult emotions expressed by TBI patients’ family members. As a whole, nursing staff evaluated that they provided emotional support for TBI patients’ family members fairly often (3.7, SD ±0.470). According to the nursing staff’s evaluations, they most often took into account TBI patients’ family members’ individuality and respected them (4.4, SD ±0.503). Nursing staff also stated that they often encouraged TBI patients’ family members (4.0, SD ±0.557). Nursing staff fairly often supported family members’ ability to cope (3.6, SD ±0.619) and created a safe atmosphere (3.3, SD ±0.769), and dealt less often with family members’ difficult emotions, such as anger and guilt (2.8, SD ±0.780).
From the nursing staff’s perspective the provision of emotional support for TBI patients’ family members required basic competence encouragement of TBI patients’ family members (1.3, SD ±0.337); dealing with difficult emotions expressed by TBI patients’ family members (1.3, SD ±0.383); supporting the ability of TBI patients’ family members to cope (1.4, SD ±0.441); creating a safe atmosphere (1.1, SD ±0.343); taking into account TBI patients’ family members’ individuality and respecting them (1.2, SD± 0.365).
Nursing staff’s background variables were not connected to either how often nursing staff evaluated supporting TBI patients’ family members or what level of competence they assessed is required by emotional support. (Paper III)
5.3 PRACTICAL SUPPORT IN SUPPORTING TBI PATIENTS’ FAMILY MEMBERS
As a result of the content analysis of the systematic literature review in the first phase of the study, four classes of practical support were formed: supporting family members in decision-making, promoting welfare, supporting family members in participating in TBI patients’ care, and co-operation with family members and guidance to support services (Figure 6). Family members wanted to participate in the patient’s care and take part in making decisions about the patient’s treatment. Family members need support and help in order to cope with the problems they face with the TBI patient on a daily basis. Nursing staff and peer support groups provide family members with tools to deal with the problems they are faced with. (Sinnakaruppan et al. 2005.) The welfare of family members is promoted by them having a chance to get a break from the TBI patient’s care (Kneafsey & Gawthorpe 2004, Winstanley et al. 2006). Both the family members and the health-care professionals found that the support provided for behaviour disturbances was insufficient (Murray et al. 2006, Cornwell et al. 2009). McCabe and co-workers (2007) noted that co-operation with a social worker promoted the welfare of TBI patients’ family members, but the family members’ welfare lessened when they did not have the opportunity to attend to their own needs (Winstanley et al. 2006; Lefebvre et al. 2008). When family members had the opportunity to participate in the TBI patient’s daily care on the ward, they evaluated that they were better able to cope with assisting the patient in daily activities and supporting rehabilitation at home (Rodgers et al. 2007). Family members need guidance to acquire financial support at an early stage in case they need to leave their job to be the TBI patient’s carer after the patient’s discharge from hospital (Rotondi et al. 2007, Wongvatunyu & Porter, 2005, Arango-Lasprilla et al. 2010). Family members found that
23
nursing staff did not know enough about support services, which then caused family members not to seek services in time and so the services were delayed. Family members felt that transporting the patient to different services was particularly hard (Leith et al. 2004). Family members wanted to co-operate with a physiotherapist and an occupational therapist. Family members needed guidance on the aids that the TBI patient needed at home after discharge from hospital. (Leith et al. 2004.) (Paper I) Figure 6. Practical support for TBI patients’ family members according to systematic review
(Coco et al. 2011).
As a result of the survey in the second phase of the study, the mean sum variables of practical support were formed: co-operation with TBI patients’ family members (mean 4.2; SD ±0.617), planning the TBI patient’s discharge with family members (mean 3.7; SD ±0.754), guidance in daily activities (mean 3.5; SD ±0.685), respectful attitude and supporting family members’ refreshment (mean 3.1; SD ±0.746), and guiding family members in facing TBI patients’ mood swings and the symptoms caused by TBI (mean 3.0; SD ±0.705). As a whole, nursing staff evaluated that they provided practical support for family members fairly often (3.4, SD ±0.545).
Nursing staff evaluated that teaching TBI patients’ family members in daily activities (1.5; SD ±0.376) requires the most advanced competence. Guiding family members in situations when the TBI patient has mood swings (1.3; SD ±0.362) was seen as basic competence. Guiding family members to have refreshment and breaks (1.2; SD ±0.329), planning discharge from hospital (1.2; SD ±0.362), and co-operation with family members (1.2; SD ±0.367) were also noted to require basic competence.
PRACTIC
AL S
UPPO
RT
SUP
PO
RT
Decision-making
Promoting welfare
to know legal rights
to be an advocate of the TBI patient
to know available options
educational program
having break and resources
possibility for FM to direct energy
toward TBI patient
provide care to the TBI patient
participation in rehabilitation
to be told what was done
Co-operation with
family members
and counselling
services
outpatient rehabilitation
the provision of respite care
available rehabilitation services over
time
social work liaison
financial counselling
Encouraging family
members to
participate in care
educational programme
having breaks and resources
possibility for FM to direct energy
toward TBI patient
provide care for the TBI patient
participation in rehabilitation
to be told what was done
24
Taking into consideration of the background variables, practical nurses evaluated they
co-operate less with TBI patients’ family members than registered nurses (p = 0.021). According to the results, it seems that the long work experience is connected to how often nursing staff guided family members when the TBI patient had mood swings (p = 0.036). In addition, the long work experience as a nursing staff member (p = 0.015) and the long work experience in the current work unit (0.059) were connected to how often nursing staff guided family members to have breaks and refreshment (Paper IV).
5.4 SUMMARY OF THE RESULTS
According to the systematic review’s results, it was important to TBI family members that their emotions were taken into account and that they could feel respected. Family members also wanted to co-operate with health-care personnel when the TBI patient was discharged. In addition, it was crucial to get information about care and TBI symptom management.
The survey results showed, most often nurses evaluated that they provided emotional support, e.g., took into account the TBI patient’s family members and respected them. Nurses also often provided practical support, and they stated that they had a liaison with TBI patients’ family members. Nurses furthermore often provided encouragement for the TBI patient’s family members. Discharge planning, information about treatment efficacy and TBI symptom management were likewise often provided. Nurses stated that basic competence was needed to provide these support interventions. (Table 4)
In addition, registered nurses often provided information about evaluation of treatment efficacy and symptom management, and co-operated with TBI family members when the TBI patient was discharged.
Table
4.
Mean n
urs
ing inte
rvention/c
om
pete
nce s
um
vari
able
s lin
ked t
o s
upport
ing T
BI
patients
’ fa
mily m
em
bers
.
In
terven
tion
su
m
varia
ble
s
Alp
ha
Com
pete
nce s
um
varia
ble
s
Alp
ha
Dim
en
sio
n o
f
su
pp
ort
M
ean
SD
Mean
SD
Takin
g into
account
TBI
patients
’ fa
mily
mem
bers
’ in
div
iduality
and r
especting t
hem
4.4
0.5
43
0.5
4
1.2
0.3
65
0.9
3
em
otional
Lia
ison w
ith fam
ily m
em
bers
4.2
0.6
17
0.6
1
1.2
0.3
67
0.9
2
pra
ctical
Encoura
gem
ent
of TBI
patients
’ fa
mily
mem
bers
4.0
0.5
57
0.8
4
1.3
0.3
37
0.8
4
em
otional
Pla
nnin
g t
he T
BI
patient’s d
ischarg
e fro
m
hospital
3.7
0.7
54
0.7
6
1.3
0.3
62
0.6
9
pra
ctical
Sym
pto
m m
anagem
ent
3.7
0.7
38
0.8
0
1.5
0.3
50
0.6
8
info
rmational
Evalu
ation o
f tr
eatm
ent
effic
acy
3.7
0.7
42
0.7
4
1.3
0.3
51
0.6
6
info
rmational
Support
ing t
he a
bility o
f TBI
patients
’ fa
mily
mem
bers
to c
ope
3.6
0.6
19
0.7
0
1.4
0.4
41
0.7
3
em
otional
Teachin
g fam
ily m
em
bers
in d
aily a
ctivitie
s
3.5
0.6
85
0.9
2
1.2
0.3
79
0.9
2
pra
ctical
Vital sig
ns m
onitori
ng
3.3
0.7
92
0.9
0
1.4
0.3
21
0.7
7
info
rmational
Contr
ol of in
tracra
nia
l pre
ssure
3.3
0.9
38
0.8
4
1.6
0.3
95
0.7
5
info
rmational
Cre
ating a
safe
atm
osphere
3.3
0.7
69
0.7
6
1.1
0.3
43
0.8
7
em
otional
Pre
vention o
f secondary
inju
ries
3.2
0.7
42
0.8
9
1.5
0.3
51
0.8
5
info
rmational
Support
ing fam
ily m
em
bers
with r
espect
to
bre
aks a
nd r
ecre
ation
3.1
0.7
46
0.8
4
1.2
0.3
29
0.9
0
pra
ctical
Teachin
g fam
ily m
em
bers
to d
eal w
ith t
he T
BI
patient’s m
ood s
win
gs a
nd t
he s
ym
pto
ms
caused b
y t
he T
BI
3.0
0.7
05
0.9
0
1.5
0.3
76
0.8
9
pra
ctical
Dealing w
ith d
ifficult e
motions e
xpre
ssed b
y
TBI
patients
’ fa
mily m
em
bers
2.8
0.7
80
0.7
8
1.3
0.3
83
0.8
9
em
otional
Inte
rvention s
um
vari
able
s:
1 =
never,
2 =
seld
om
, 3 =
occasio
nally,
4 =
oft
en,
5 =
alw
ays.
Com
pete
nce s
um
vari
able
s:
1 =
basic
com
pete
nce a
nd 2
= a
dvanced c
om
pete
nce;
SD
, sta
ndard
devia
tion;
Alp
ha,
Cro
nhnbach’s
alp
ha.
25
26
6 Discussion
6.1 ETHICALITY OF THE STUDY
The studies in the literature review were selected systematically and carefully using diverse databases. This study was carried out following good scientific practice. The study was planned, carried out and reported in an honest and detailed manner.
In the second phase of the study, research permits were acquired according to the policies of each organization and the covering letter told recipients that participation in the study is voluntary and the management of the replies is confidential so that an individual participant cannot be recognized. Written research permits were received from all hospitals. In addition, the covering letter included the contact information for the research team in case of any questions or comments (Appendix 2, 3). The anonymity of the participants was ensured by the questionnaires being returned anonymously so that it was not possible to recognize individual participants. The results of the study have been published in an honest manner according to good scientific practice. (Burns & Grove 2001, Polit & Beck 2012.)
6.2 RELIABILITY OF THE STUDY
The reliability of the literature review was supported by the determination of the research question and the inclusion and exclusion criteria together with the research team. In addition, several databases were utilized in the literature searches. The literature searches were made in co-operation with an informatician. The reliability was further enhanced by the obtainment of all studies. The studies were made into tabular form for the analysis and the progression of the process is illustrated in a figure (Figure 2). The inclusion and exclusion criteria for the studies were pretested with a few randomly picked original scientific studies. There are, however, some limitations to the literature review. Two researchers could carry out the search and selection of the studies, which promotes the reliability of the review. In this review the searches were made together with an informatician, but the selection of the studies was made by one researcher for resource reasons. The generalization of the results is affected by the small sample size in many of the studies. In addition, only a few of the studies were made from the nursing staff’s viewpoint. It is possible that some studies have been left out from the searches, as for quality verification reasons the term “research” was used as one defining search term. (Polit & Beck 2012.)
The validity of the questionnaire content was ensured by the previous systematic literature review concerning the support provided for TBI patients’ family members, as well as the team of experts’ panel and the piloting of the questionnaire by two members of staff with extensive work experience in nursing TBI patients and supporting their family members. Both the team of experts’ panel and the piloting found that the concepts covered the studied phenomenon sufficiently (Appendix 4). The experts suggested the addition of one statement and the modification of another, and these changes were carried out. Some limitations should be noted when interpreting and utilizing the results. The data were collected using a questionnaire designed for this study, in which nursing staff themselves evaluated how often they provided informational, emotional and practical support. It is
27
possible that they over- or underestimated the frequency of the support. In addition, it is important to take into consideration that a lot of items in the questionnaire are focused on what nurses do (e.g., I tell…). By scoring these items, nurses reported their activities. This can be seen as a report of more ‘objective’ activities of nurses that nurses can report because the items focus on issues that they can evaluate (what do I do). Other items focus on the effects that nurses generate by acting and performing their activities (e.g., I assure…). If nurses scored these items, they did not really or only score their activity itself, but the intention or effect of their activity. It is also possible that respondents answered according to what they thought were the ideal situation.
Although the study used a whole sample, the sample size is small which also affects the generalization of the results. The response rate (67%) was moderate, but it is not known who did not respond and this can also affect the generalization of the results. Furthermore, the survey was carried out among nursing staff in all the neurosurgical wards in all Finnish university hospitals; however, this may limit the international generalization of the results. (Burns & Grove 2001.)
The reliability and internal consistency of the questionnaire were assessed by factor analysis and in all categories of support (informational, emotional, practical) a five-factor solution was formed. The validity of the questionnaire content was ensured by calculating Cronbach’s alpha values; the values of the intervention sum variables varied between 0.54 and 0.92, and the values of the competence sum variables varied between 0.66 and 0.93 and the values were rather good. (Heo et al. 2005, Shyu et al. 2006, DeVellis 2012.) In addition, the reliability of the results was ensured by including in the study all Finnish university hospitals, where adult TBI patients are treated immediately after the injury. The sample can be considered to be representative, as it is a so-called whole sample, because the nursing staff of all neurosurgical wards in Finnish university hospitals were invited to participate in the study. (DeVellis 2012.)
6.3 DISCUSSION
Based on the literature review findings, it was stated that the support needed by family members can be divided into informational, emotional and practical support. A clear knowledge base gap was noted in previous research concerning neurosurgical nursing staff’s evaluations and competence about supporting TBI patients’ families.
The study produced new information about what providing support for TBI patients’ family members entails, how often nursing staff evaluated they provide informational, emotional and practical support for TBI patients’ family members, and what kind of competence is required by nursing TBI patients and supporting family members. Nursing staff evaluated that they provided support fairly often for family members in these categories.
Nursing staff members evaluated that informational support was most seldom offered to family members.The informational support needed by TBI patients’ family members was divided into information about the TBI patient’s symptoms, information about the TBI patient’s care, the quality of information, and information about the prognosis. According to the results, nursing staff evaluated that they most often informed TBI patients’ family members about symptom management (e.g., pain or epileptic seizure medication) and efficacy of treatment (e.g., treatment is assessed using a pulse oximeter and pain scale), whereas the prevention of secondary injuries was most seldom discussed (e.g., taking/monitoring blood tests). Family members, however, want to receive exact information about possible complications and the TBI patient’s prognosis (Wongvatunyu & Porter 2005, Verhaeghe et al. 2005a, 2005b, Verhaeghe et al. 2007, Falk et al. 2008, Arango-
28
Lasprilla et al. 2010, Calvete & deArroyabe 2012). The individual informational needs of family members must be taken into account when giving information (Falk et al. 2008, Prachar et al. 2010, Puggina et al. 2012). Prachar et al. (2010) argued that TBI patients’ family members’ most important needs were: to have questions answered honestly, to be assured that the best possible care has been given to the patient, to know specific facts concerning the TBI patient’s progress, to know expected outcome and to know that the patient’s pain is being addressed. It is also important for family members to receive understandable and honest information once a day (Lam & Beaulieu 2004, Verhaeghe et al. 2007, Arango-Lasprilla et al. 2010, Roscigno et al. 2013). Lefebvre and Levert (2006) reported that TBI patients’ family members felt they received an insufficient amount of information. On the other hand, Verhaeghe and co-workers (2007) noted that telling family members exact values of, e.g., intracranial pressure may be confusing to them. It can be difficult for family members to understand the sudden changes in the TBI patient’s condition when the values suddenly worsen. In this study, nursing staff found that informing family members about the monitoring of intracranial pressure requires advanced competence. Previously, nursing staff have identified the prevention of secondary injuries and control of intracranial pressure as important research topics in nursing neuropatients (DiIorio et al. 2011). Nursing staff with a short work experience evaluated that they informed TBI patients’ family members about vital signs monitoring the most seldom, and also that this requires basic competence. Whereas informational support was evaluated to require the most advanced competence, and the nursing staff members with more than 21 years of work experience as a nursing staff member evaluated that informing family members about vital signs monitoring requires advanced competence. It is possible that the nursing staff with a short work experience consider vital signs monitoring as a basic technical skill. In contrast, those who have more than 21 years of work experience as a nursing staff member make broader analysis and interpretations when they tell TBI patients’ family members about monitoring vital signs.
These results are similar to the study by Watts et al. (2011), as they noted that nurses rated their level of knowledge regarding the examination of TBI patients’ physical condition as fairly good, whereas they found that their knowledge in guiding family members is weaker. Nursing staff can reassure TBI patient’s family members e.g. by telling why vital signs are monitored and not only by reporting medical parameters, which family members may not be able to interpret correctly. Family members need concrete and understandable information about TBI patients’ condition and their treatment in order to be reassured that the best care is provided. (Verhaeghe et al. 2007, Roscigno et al. 2013.) While Lavdaniti et al. 2011 argued that more educated nurses are more demand of themselves to provide higher informational support to the family members.
Emotional support was provided most often according the nursing staff’s evaluations. Emotional support entails taking family members’ emotions into account, caring and listening, and respecting. However, Arango-Lasprilla et al. (2010) stated that TBI patients’ family members reported emotional support to be the most frequently unmet needs. Providing emotional support for family members was seen as basic competence. However, Lefebvre et al. (2007) noted that nursing staff found it difficult to deal with difficult situations, e.g., they felt it was difficult to deal with TBI patients’ family members’ reactions when they had to break bad news. Nursing staff members’ age, education, length of work experience as a nursing staff member, and as a nursing staff member on a neurosurgical ward, were not connected to how often they provided emotional support for patients’ family members. Usually, the nursing staff member believed that they supported the family members of TBI patients in their grief; according to previous studies, family members may grieve for the TBI patient in a similar way to people who have lost a family member (Verhaeghe et al. 2005b). Nursing staff member evaluated that they most often took TBI patients’ family members’ individuality into account and respected them as well as, e.g.,
29
they encouraged TBI patients’ family members when there was no hope left (Roscigno et al. 2013). Winstanley et al. (2006) stated that family members need support to maintain hope. Verhaeghe et al. (2005a, 2007, 2010a, 2010b) noted that TBI patients’ family members also want to understand what is happening to the TBI patient, and they also want their hope to be realistic and be protected from false hope (Puggina et al. 2012). On the other hand, nursing staff members evaluated that they most seldom dealt with difficult emotions expressed by TBI patients’ family members. Less than one-third of nursing staff members discussed feelings of guilt and anger with TBI patients’ family members. According to Jumisko et al. (2007), TBI patients’ family members felt that they didn’t receive enough help with their feelings. Also, Keenan and Joseph (2010) found out that to TBI patients’ family members it was important to be assured that negative feelings are common. Lefebvre et al. (2007) reported that nurses who had received training in facing family members’ difficult emotions felt more competent. Less than one-third of nursing staff members took into account TBI patients’ family members’ spiritual needs, however Puggina et al. (2012) stated that nursing staff members should encourage and support the spiritual needs of TBI patients’ family members, if necessary. Overall the provision of emotional support for TBI patients’ family members was evaluated as requiring basic competence, although almost half of the nursing staff thought that discussing feelings of anger and guilt with a TBI patient’s family members required advanced competence. It is possible that advanced competencies are often assessed as basic ones, because the complexity of the competence is unknown to the nursing staff. The results of the study indicate that this could be the case for at least some of the ‘basic’ competences, e.g., emotional support.
Meretoja et al. (2004) pointed out that nursing staff evaluated themselves most competent in the helping role (helping the patients to cope, providing individualized care). It is also known that technical competences or competences that are clearly seen as professional ones are often scored as more complex/advanced and more valued. Nursing interventions that can be conducted by uneducated caregivers are often seen as basic competences, e.g., comforting, giving emotional support, bathing, and feeding. However, the caregivers may need advanced competence, e.g., for facing feelings of guilt and anger of TBI patients’ family members or feeding TBI patients with swallowing problems. (Cowan et al. 2005, Defloor et al. 2006, Sapounzi-Krepia et al. 2006, Sapounzi-Krepia et al. 2008, Lavdaniti et al. 2011, Murphy & Carmine 2012.)
Practical support comprised supporting decision-making, promoting welfare, encouraging family members to participate in the TBI patient’s care, and co-operating with family members and counselling services. Liaison with TBI patients’ family members was the nursing intervention carried out most often according nursing staff members’ evaluations. For example, they reported to organize a chance to speak with the doctor or enabled flexible visiting hours. At the beginning of treatment in particular, family members want to spend as much time with the TBI patient as possible (Verhaeghe et al. 2010). Lam and Beaulieu (2004) noted that for the family members it was important that there is a waiting room near the TBI patient. The frequency of teaching TBI patients’ family members in daily activities varied according nursing staff’s evaluations. Nursing staff reported that they often taught family members to support independent functions, e.g., eating independently, but they seldom provided guidance with respect to helping with bathing when the TBI patient suffered from poor concentration. Keenan and Joseph (2010) found out that supporting nursing interventions such as putting cream on feet and wiping the mouth were specific activities that gave family members a sense of involvement (Fisher et al. 2008, Calvete & deArroyabe 2012). Choosing the right moment, the right nursing intervention, and supporting them in undertaking the intervention, increased the well-being and confidence in the family’s ability to become independent in caring for the TBI patient (Keenan & Joseph 2010). According to the findings, nursing staff reported they seldom offered TBI patients’ family members chances to take breaks or recreation, or help
30
with sleeping arrangements, although this was considered to be basic competence. According to Keenan and Joseph (2010), nursing staff should acknowledge TBI patients’ family members’ need for rest, food and sleep. With respect to the background variables, registered nurses evaluated that they had liaison with family members more often than other professions. Verhaeghe and co-workers (2010a) noted that family members need someone whom they can blindly trust. Such a person makes family members feel less insecure and they are reassured that the TBI patient gets the best possible treatment. In addition, Puggina et al. (2012) argued that nursing staff are responsible for the job of teaching the TBI patient’s family members to constantly seek more participation from the family in the recovery of the patient. Nursing staff members evaluated that they seldom provided support for family members when TBI patients’ family members needed guidance in how to deal with the patient’s mood swings and the symptoms caused by TBI, e.g., by guiding family members how to prevent and predict aggressive behaviour. Pryor (2006), however, mentioned that nursing staff have different means of calming down an aggressive TBI patient by avoiding haste, debate and refusal. In addition, they aimed for short and to-the-point communication as well as trying to speak to the TBI patient in a gentle and calm manner. In the future it’s possible that TBI patients’ family members will be expected to participate more, because of a lack of health-care staff and resources. Furthermore, it’s imperative that nurses are competent enough to provide information and teaching for the family members. Lavdaniti et al. (2011) stated that nurses underestimated most of the family needs (informational, assurance, proximity). In addition Verhaeghe et al. (2005a) stated that the amount of experience relates negatively with the skill to consider the needs of family members.
6.4 CONCLUSIONS AND RECOMMENDATIONS
1. Family members want specific information about the condition and the reasons for particular treatments at least once a day from the doctor and nurses. Nursing staff members with little work experience reported that they give less information about patient’s condition e.g. vital signs to TBI patients’ family members. This should be taken into account when planning shifts so that there is enough competent nursing staff available at all times. 2. According previous studies nursing staff members can underestimate the emotional needs of family members. The nursing staff members with more extensive work experience reported that they most often provided emotional support for TBI patients’ family members when they had feelings of anger and guilt. These results should be taken into account when planning the orientation of new nursing staff and in-service training. 3. Nursing staff members evaluated that they seldom offered family members opportunities for refreshment and breaks. This may result from the lack of a resting space for family members in many hospitals. This should be taken into account when planning, e.g., renovations in hospitals. Family members want to be close to the TBI patient and spend a lot of time in the hospital, therefore adequate refreshment spaces are necessary for them. 4. Nursing staff members evaluated that they seldom guided family members in how to prevent TBI patients’ aggressive behaviour which, after all, is one of the most stressful symptoms from family members’ perspective. This should be taken into consideration when orienting new staff and in-service training about challenging behaviour could also help nursing staff to manage it.
31
6.5 SUGGESTIONS FOR FURTHER RESEARCH
1. To examine with qualitative methods what kind of support (informational, emotional, practical) Finnish TBI patients’ family members need in order to cope in their difficult situation when their loved one is suffering from TBI. 2. To study the competence requirements of nursing staff members working on neurosurgical wards. 3. To test knowledge combined with an educational intervention because this offers the opportunity to investigate nursing staff’s competence in more detail. 4. To study with qualitative methods the quality of information, e.g., whether the information is, from the family members’ perspective, purposeful and appropriately timed, and what the family members feel the content should include. 5. To carry out an intervention study, where family members and nursing staff could practise facing difficult emotions together, which could produce important information about how nursing staff can provide emotional and practical support for TBI patients’ family members in the best possible way. 6. To examine the cultural differences in family members’ information needs and between nursing staff members with different cultural backgrounds. 7. To study how neuronurses cope with the lack of time and personnel in overcrowded neurosurgical wards.
32
7 References
Anzoletti AB, Buja A, Bortolusso V & Zampieron A. 2008. Access to intensive care units: A survey in North-
East Italy. Intensive & Critical Care Nursing 24 (6), 366–374.
*Arango-Lasprilla JC, Quijano MC, Aponte M, Cuervo MT, Nicholls E, Rogers HL & Kreutzer J. 2010. Family
needs in caregivers of individuals with traumatic brain injury from Colombia, South America. Brain Injury
24(7–8), 1017–1026.
Barker E. 2002. Neuroscience Nursing: A Spectrum of Care. 2nd edition. St Louis, MO: Mosby.
Bay E & McLean SA. 2007. Mild traumatic brain injury: An update for advanced practice nurses. Journal of
Neuroscience Nursing 39(1), 43–51.
Benzein E, Johansson P, Årestedt KF & Saveman B-I. 2008. Nurses’ attitudes about the importance of families
in nursing care. A survey of Swedish nurses. Journal of Family Nursing 14(2), 162–180.
Berry J, Elliott T, Grant J, Edwards G & Fine P. 2012. Does problem-solving training for family caregivers
benefir their care recipients with severe disabilities? A latent growth model of the Project CLUES randomized
clinical trial. Rehabilitation Psychology 57(2), 98–112.
Bland DC, Zampieri C & Damiano DL. 2011. Effectiveness of physical therapy for improving gait and balance
in individuals with traumatic brain injury: A systematic review. Brain Injury 25(7–8), 664–679.
Bond EA, Draeger CRL, Mandleco B & Donnelly M. 2003. Needs of family members of patients with severe
traumatic brain injury. Implications for evidence-based practice. Critical Care Nurse 23, 63–72.
Brain Association. 2013. Aivoverenkiertohäiriöt_Kuntoutuminen. Retrieved from:
http://www.aivoliitto.fi/aivoverenkiertohairio(avh)/aivoverenkiertohairio/kuntoutuminen. Cited 25th
February 2013. In Finnish.
Brain Trauma Foundation. 2007. Guidelines for the management of severe traumatic brain injury. 3rd edition.
Retrieved from http://www.braintrauma.org/pdf/protected/Guidelines_Management_2007w_bookmarks.pdf .
Cited 12th January 2013.
Bryan CJ & Hernandez AM. 2011. Predictors of post-traumatic headache severity among deployed military
personnel. Headache: The Journal of Head and Face Pain 51(6), 945–953.
Burns N & Grove SK. 2001. The Practice of Nursing Research. Conduct, Critique and Utilisation, 4th edition.
Philadelphia, PA: WB Saunders Co.
Burton C & Gibbon B. 2005. Expanding the role of the stroke nurse: A pragmatic clinical trial. Journal of
Advanced Nursing 52(6), 640–650.
Calvete E & deArroyabe EL. 2012. Depression and grief in Spanish family caregivers of people with traumatic
brain injury: the roles of social support and coping. Brain Injury 26(6), 834−43.
Calvin AO, Kite-Powell DM & Hickey JV. 2007. The neuroscience ICU nurse’s perceptions about end-of-life
care. Journal of Neuroscience Nursing 39(3), 143–150.
33
Cantor JB, Ashman T, Gordon W, Ginsberg A, Engmann C, Egan M, Spielman L, Dijkers M & Flanagan S.
2008. Fatigue after traumatic brain injury and its impact on participation and quality of life. Journal of Head
Trauma Rehabilitation 23(1), 41–51.
Cavanagh S. 1997. Content analysis: Concepts, methods and applications. Nurse Researcher 4(3), 5–16.
Celik SA. 2004. Nosocomial infections in neurosurgery intensive care units. Journal of Clinical Nursing 13(6),
741–747.
*Chan J. 2007. Carers’ perspective on respite for persons with acquired brain injury. International Journal of
Rehabilitation Research 30, 137–146.
*Charles N, Butera-Prinzi F & Perlesz A. 2007. Families living with acquired brain injury: A multiple family
group experience. NeuroRehabilitation 22, 61–76.
*Chronister J, Chan F, Sasson-Gelman J & Chung-Yi C. 2010. The association of stress-coping variables to
quality of life among caregivers of individuals with traumatic brain injury. NeuroRehabilitation 27, 49–62.
Clark C, Brown J, Bailey C & Hutchinson P. 2009. Supporting families in the context of adult traumatic brain
injury. British Journal of Neuroscience Nursing 5(5), 216–20.
Clinical Practice Guideline. 2009. Management of concussion/mild traumatic brain injury. The Management of
Concussion/mTBI Working Group. Retrieved from http://www.guideline.gov/content.aspx?id=15677&search.
Cited April 2011.
Coco K, Turunen H, Sillanpää K & Juvela S. 2007. Nuorten monivammapotilaiden omaisten tiedollinen
tukeminen – kysely yliopistosairaaloiden hoitotyöntekijöille. Hoitotiede 19(4), 202–211. In Finnish.
Coco K, Tossavainen K, Jääskeläinen JE & Turunen H. 2011. Support for traumatic brain injury patients’
family members in neurosurgical nursing: A systematic review. Journal of Neuroscience Nursing 43, 337–348.
Comper P, Bisschop SM, Carnide N & Tricco A. 2005. A systematic review of treatments for mild traumatic
brain injury. Brain Injury 19(11), 863–880 (doi:10.1080/02699050400025042).
Cook NF, Deeny P & Thompson K. 2004. Management of fluid and hydration in patients with acute
subarachnoid haemorraghe – an action research project. Journal of Clinical Nursing 13(7), 835– 849.
*Cornwell P, Fleming F, Fisher A, Kendalla M, Tamara Ownsworth T & Turner B. 2009. Supporting the needs
of young adults with acquired brain injury during transition from hospital to home: The Queensland service
provider perspective. Brain Impairment 10(3), 325–340.
Cowan DT, Norman I & CoopamahVP. 2005. Competence in nursing practice: A controversial concept – A
focused review of literature. Nurse Education Today 25, 355–362.
Defloor T, van Hecke A, Verhaeghe S, Gobert M, Darras E & Grypdonck M. 2006. The clinical nursing
competences and their complexity in Belgian general hospitals. Journal of Advanced Nursing 56(6), 669–678.
DeVellis RF. 2012. Scale Development. Theory and Applications. 3rd edition. Singapore: SAGE
Publications,Inc.
DiIorio C, Hinkle JL, Stuifbergen A, Algase D, Amidei CS, Austin J, Buelow JM, Fraser C, Gulick EE,
Haberman B & Smeltzer SC. 2011. Updated priorities for neuroscience nursing. Journal of Neuroscience
Nursing 43(3), 149–55.
34
Driver S. 2005. Social support and the physical activity behaviours of people with a brain injury. Brain Injury
19, 1067−1075.
Elo S & Kyngäs H. 2007. The qualitative content analysis process. Journal of Advanced Nursing 62(1), 107–
115.
Falk AC, von Wendt L & Klang B. 2008. Informational needs in families after their child’s mild head injury.
Patient Education and Counseling 70(2), 251–255.
Falk AC. 2013. A nurse-led pediatric head injury follow-up service. Scandinavian of Caring Sciences 27(1), 51–
56.
Faul M, Xu L, Wald MM & Coronado VG. 2010. Traumatic Brain Injury in the United States: Emergency
Department Visits, Hospitalizations and Deaths 2002–2006. Atlanta (GA): Centers for Disease Control and
Prevention, National Center for Injury Prevention and Control Retrieved from
http://www.cdc.gov/traumaticbraininjury/pdf/blue_book.pdf. Read 1.6.2013.
Finfgeld-Connett D. 2005. Clarification of social support. Journal of Nursing Scholarship 37(1), 4–9.
Finfgeld-Connett D. 2007. Concept comparison of caring and social support. International Journal of Nursing
Terminologies and Classifications 18(2), 58–68.
Fisher C, Lindhorst H, Matthews T, Munroe DJ, Paulin D & Scott D. 2008. Nursing staff attitudes and
behaviours regarding family presence in the hospital setting. Journal of Advanced Nursing 64(6), 615–624.
Forsbom M-B, Kärki E, Leppänen L & Sairanen R. 2001. Aivovauriopotilaan kuntoutus. Helsinki: Tammi. In
Finnish.
Friedman MM, Bowden VR & Jones EG. 2003. Family Nursing: Research, Theory, and Practice. 5th edition.
Upper Saddle River, NJ: Prentice Hall.
Gallagher R, Drance E & Higginbotham S. 2006. Finding the person behind the pain: Chronic pain
management in a patient with traumatic brain injury. Journal of American Medical Directors Association 7(7),
432–434.
Harju E, Rantanen A, Tarkka M-T & Åstedt-Kurki P. 2011. Eturauhassyöpäpotilaiden ja heidän läheistensä
sairaalassa saama tuki. Hoitotiede 23(3), 218–229. In Finnish.
*Hart T, O’Neil-Pirozzi TM, Williams KD, Rapport LJ, Hammond F & Kreutzer J. 2007. Racial differences in
caregiving patterns, caregiver emotional function, and sources of emotional support following traumatic brain
injury. Journal of Head Trauma Rehabilitation 22, 122–131.
Hawley C & Joseph S. 2008. Predictors of positive growth after traumatic brain injury: A longitudinal study.
Brain Injury 22(5), 427–435.
Heikkilä A, Ahola N, Kankkunen P, Meretoja R & Suominen T. 2007. Sairaanhoitajien ammatillinen pätevyys
sisätautien, kirurgian ja psykiatrian toimintaympäristössä. Hoitotiede 19(1), 3–12. In Finnish.
Heo S, Moser DK, Riegel B, Lynne AH & Christman N. 2005. Testing the psychometric properties of the
Minnesota Living with Heart Failure Questionnaire. Nursing Research 54, 260–272.
Hickey JV. 2009. The Clinical Practice of Neurological and Neurosurgical Nursing. 6th edition. Philadelphia,
PA: Wolters Kluwer Health, Lippincott Williams & Wilkins.
35
Hora EC & de Sousa RMC. 2005. Effect of the behavioral alterations of victims of traumatic brain injury for the
family caregiver. Revista Latino-Americana de Enfermagem 13, 93−98. Abstract.
Isaksson AK & Ahlstrom, G. 2006. From symptom to diagnosis: Illness experiences of multiple sclerosis
patients. Journal of Neuroscience Nursing 38(4), 229–237.
Jaffee MS, Helmick KM, Girard PD, Meyer KS, Dinegar K & George K. 2009. Acute clinical care and care
coordination for traumatic brain injury within Department of Defense. Journal of Rehabilitation Research &
Development 46(6), 655–666.
Jumisko E, Lexell J & Söderberg S. 2005. The meaning of living with traumatic brain injury in people with
moderate or severe traumatic brain injury. Journal of Neuroscience Nursing 37(1), 42–50.
Jumisko E, Lexell J & Soderberg S. 2007. Living with moderate or severe traumatic brain injury: The meaning
of family members’ experiences. Journal of Family Nursing 13(3), 353–69.
Jumisko E, Lexell J & Soderberg S. 2009. The meaning of feeling well in people with moderate or severe
traumatic brain injury. Journal of Clinical Nursing 18(16), 2273–2281.
Kaila A. 2009. Aivoverenkiertohäiriöön sairastuneen ja hänen omaisensa tukeminen ja ohjaus hoitotyössä –
metasynteesi. Hoitotiede 21(1), 3–12. In Finnish.
Keenan A & Joseph L. 2010. The needs of family members of severe traumatic brain injured patients during
critical and acute care: A qualitative study. Canadian Journal of Neuroscience Nursing 32(3), 25–35.
Kervick RB & Kaemingk KL. 2005. Cognitive appraisal accuracy moderates the relationship between injury
severity and psychosocial outcomes in traumatic brain injury. Brain Injury 19(11), 881–889.
Knapp M, Gillespie E, Malec J, Zier M, Harless W. 2013. Evaluation of virtual dialogue method for acquired
brain injury education: A pilot study. Brain Injury 27(4), 388–393.
*Kneafsey R & Gawthorpe D. 2004. Head injury: Long-term consequences for patients and families and
implications for nurses. Journal of Clinical Nursing 13(5), 601–608.
Koivula M, Halme N & Tarkka M. 2007. Ohitusleikkauspotilaiden depression-oireet ja hoitajilta saatu
sosiaalinen tuki. Hoitotiede 19(4), 179–191. In Finnish.
Kontos PC, Miller KL, Gilbert J, Mitchell G, Colantonio A, Keighley M & Cott C. 2012. Improving client-
centered brain injury rehabilitation through research-based theater. Qualitative Health Research 22(12), 1612–
1632.
Koskinen S & Alaranta H. 2008. Traumatic brain injury in Finland 1991–2005: A nationwide register study of
hospitalized and fatal TBI. Brain Injury 22(3), 205–14.
*Kreuzer J, Stejskal TM, Ketchum JM, Marwitz JH, Taylor LA & Menzel JC. 2009. A preliminary investigation
of the brain injury family intervention: Impact on family members. Brain Injury 23, 535–547.
Laki terveydenhuollon ammattihenkilöstöstä.1994./559. Retrieved from:
http://www.finlex.fi/fi/laki/alkup/1994/19940559 Read January 2013. In Finnish.
Lam P & Beaulieu M. 2004. Experiences of families in the neurological ICU: “A bedside phenomenon”.
Journal of Neuroscience Nursing 36, 142–155.
36
Lane-Brown A & Tate R. 2009. Interventions for apathy after traumatic brain injury. Cochrane Database of
Systematic Reviews, Issue 2.
Lavdaniti M, Raftopoulos V, Sgantsos M, Psychogiou M, Areti T, Georrgiadou C, Serpanou I & Sapountzi-
Krepia D. 2011. In-hospital informal caregivers’ needs as perceived by themselves and by the nursing staff in
Northern Greece: A descriptive study. BMC Nursing 10:19. Cited 10th March 2013. Retrieved from:
http://www.biomedcentral.com.ezproxy.uef.fi:2048/content/pdf/1472-6955-10-19.pdf.
Lefebvre H & Levert MJ. 2006. Breaking the news of traumatic brain injury and incapacities. Brain Injury
20(7), 711–718.
*Lefebvre H, Pelchat D & Levert MJ. 2007. Interdisciplinary family intervention program: A partnership
among health professionals, traumatic brain injury patients, and caregiving relatives. Journal of Trauma
Nursing 14(2), 100–113.
*Lefebvre H, Levert MJ, Pelchat D &Lepage JG. 2008. Nature, sources, and impact of information on the
adjustment of family caregivers: A pilot project. Canadian Journal of Nursing Research 40, 143–160.
Lefebvre H & Levert MJ. 2012. The close relatives of people who have had a traumatic brain injury and their
special needs. Brain Injury 26(9), 1084–1097.
*Leith KH, Phillips L & Sample PL. 2004. Exploring the service needs and experiences of persons with TBI and
their families: The South Carolina experience. Brain Injury 18, 1191–1208.
Leung J, Moseley A, Fereday S, Jones T, Fairbairn T & Wyndham S. 2007. The prevalence and characteristics
of shoulder pain after traumatic brain injury. Clinical Rehabilitation 21(2), 171–191.
Liimatainen S, Niskakangas T & Öhman J. 2012. Lievät aivovammat päivystyslääketieteessä. Teoksessa
Lindstam S & Ylinen A. Aivovammojen kuntoutus. Duodecim. Porvoo, Finland: Bookwell Oy. 20–26. In
Finnish.
Lindstam S. 2012. Voimaantuminen aivovammatyössä. Teoksessa Lindstam S & Ylinen A. Aivovammojen
kuntoutus. Duodecim. Porvoo, Finland: Bookwell Oy. 172–176. In Finnish.
Livesay S, Mokracek M, Sebastian S & Hickey JV. 2005. Nurses’ perceptions of open visiting hours in
neuroscience intensive care unit. Journal of Nursing Care Quality 20, 182–189.
*McCabe P, Lippert C, Weiser M, Hilditch M, Hartridge C &Villamere J. 2007. Community reintegration
following acquired brain injury. Brain Injury 21, 231–257.
Marwit SJ & Kaye PN. 2006. Measuring grief in caregivers of persons with acquired brain injury. Brain Injury
20(13–14), 1419–1429.
Mattila E, Kaunonen M, Aalto P, Ollikainen J & Åstedt-Kurki P. 2009. Sairaalapotilaiden perheenjäsenen tuki
ja siihen yhteydessä olevat tekijät. Hoitotiede 21(4), 294–303. In Finnish.
Meretoja R, Isoaho H & Leino-Kilpi H. 2004. Nurse competence scale: Development and psychometric testing.
Journal of Advanced Nursing 47(2), 124–133.
Murphy M & Carmine H. 2012. Long-term health implications of individuals with TBI: A rehabilitation
perspective. NeuroRehabilitation 31(1), 85–94.
*Murray HM, Maslany GW & Jeffery B. 2006. Assessment of family needs following acquired brain injury in
Saskatchewan. Brain Injury 20, 575–585.
37
Mäkipeura J, Meretoja R, Virta-Helenius M & Hupli M. 2007. Sairaanhoitaja neurologisessa
toimintaympäristössä. Ammatillinen pätevyys, toiminnan tiheys ja täydennyskoulutuksen haasteet.
Hoitotiede 19, 152–162. In Finnish.
Mäkitalo R, Hautala U, Narikka J & Tuukkanen J. 2010. Hyvinvointia kestävästi. Retrieved from:
http://www.vm.fi/vm/fi/04_julkaisut_ja_asiakirjat/01_julkaisut/08_muut_julkaisut/20110112Hyvinv/Hyvinvoi
ntia_kestaevaesti.pdf. Cited 10th March 2013. In Finnish.
Nevalainen A, Kaunonen M & Åstedt-Kurki P. 2007. Syöpäpotilaan läheisen hoitohenkilökunnalta saama
tiedollinen tuki polikliinisessä hoidossa. Hoitotiede 19(4), 192–201. In Finnish.
Norrie J, Heitger M, Leathem J, Anderson T, Jones R & Flett R. 2010. Mild traumatic brain injury and fatigue:
A prospective longitudinal study. Brain Injury 24(13–14), 1528–1538.
Norup A, Siert L & Mortensen EL. 2010. Emotional distress and quality of life in relatives of patients with
severe brain injury: The first month after injury. Brain Injury 24(2), 81–88.
Nuutinen H-L & Raatikainen R. 2005. Omaisten osallistuminen hoitoon ja osallistumiseen saatu tuki
vanhusten pitkäaikaisessa laitoshoidossa. Hoitotiede 17(3), 131–144. In Finnish.
Ofek H & Defrin R. 2007. The characteristics of chronic central pain after traumatic brain injury. Pain 131(3),
330–340.
Olson DM, McNett MM, Lewis LS, Riemen KE & Bautista C. 2013. Effects of nursing interventions on
intracranial pressure. AJCC. American Journal of Critical Care 22(5), 431–438.
O’Connell B, Baker L & Prosser A. 2003. The educational needs of caregivers of stroke survivors in acute and
community settings. Journal of Neuroscience Nursing 35(1), 21–28.
Polit DF & Beck CT. 2012. Nursing Research. Generating and Assessing Evidence for Nursing Practice. 9th
edn. Philadelphia, PA: Lippincott Williams & Wilkins.
Prachar TL, Mahanes D, Arceneaux A, Moss BL, Jones S, Conaway M & Burns SM. 2010. Recognizing the
needs of family members of neuroscience patients in an intensive care setting. Journal of Neuroscience
Nursing 42(5), 274–279.
Pryor J. 2004. What environmental factors irritate people with acquired brain injury? Disability &
Rehabilitation 26(16), 974–80.
Pryor J. 2005. What cues do nurses use to predict aggression in people with acquired brain injury? Journal of
Neuroscience Nursing 37(2), 117–121.
Pryor J. 2006. What do nurses do in response to their predictions of aggression? Journal of Neuroscience
Nursing 38(3), 177–182.
Puggina ACG, daSilva MJP, Schnakers & Laureys S. 2012. Nursing care of patients with disorders of
consciousness. Journal of Neuroscience Nursing 44(5), 260–270.
*Rodgers ML, Strode AD, Norell DM, Short RA, Dyck DG & Becker B. 2007.Adapting multiple-family group
treatment for brain and spinal cord injury intervention development and preliminary outcomes. American
Journal of Physical Medicine and Rehabilitation 86, 482–491.
38
Roscigno CI, Gran G, Savage TA & Philipsen G. 2013. Parent perceptions of early prognostic encounters
following children’s severe traumatic brain injury: ‘Locked up in this cage of absolute horror’. Brain Injury
DOI: 10.3109/02699052.2013.831122.
*Rotondi AJ, Sinkule J & Spring M. 2005. An interactive Web-based intervention for persons with TBI and
their families: Use and evaluation by female significant others. Journal of Head Trauma Rehabililitation 20(2),
173–185.
*Rotondi AJ, Sinkule J, Balzer K, Harris J & Moldovan R. 2007. A qualitative needs assessment of persons who
have experienced traumatic brain injury and their primary family caregivers. Journal of Head Trauma
Rehabilitation 22(1), 14–25.
Sapountzi-Krepia D, Raftopoulos V, Sgantzos M., Dimitriadou A, Ntourou I & Sapkas G. P. 2006. Informal in-
hospital care in a rehabilitation setting in Greece: An estimation of the nursing staff required for substituting
this care. Disability and Rehabilitation 28(1), 3–11.
Sapountzi-Krepia D, Raftopoulos V, Psychogiou M, Sakellari E, Toris A, Vrettos A & Arsenos P. 2008.
Dimensions of informal care in Greece: The family's contribution to the care of patients hospitalized in an
oncology hospital. Journal of Clinical Nursing 17, 1287–1294.
Seneviratne C, Then KL & Reimer M. 2005. Poststroke shoulder subluxation: A concern for neuroscience
nurses. AXON. 27(1), 26–31. Abstract.
Shyu YIL, Tang WR, Liang J & Weng LJ. 2006. Psychometric testing of the social support survey on a
Taiwanese sample. Nursing Research 55(6), 411–417.
Sigurdardottir S, Andelic N, Roe C & Schanke AK. 2009. Cognitive recovery and predictors of functional
outcome 1 year after traumatic brain injury. Journal of the International Neuropsychological Society 15(5),
740–750.
*Sinnakaruppan I, Downey B & Morrison S. 2005. Head injury and family carers: A pilot study to investigate
an innovative community-based educational programme for family carers and patients. Brain Injury 19, 283–
308.
Smith J, Forster A & Young J. 2004. A randomized trial to evaluate an education programme for patients and
carers after stroke. Clinical Rehabilitation 18(7), 726–736.
Tagliaferri F, Compagnone C, Korsic M, Servadei S & Kraus J. 2006. A systematic review of brain injury
epidemiology in Europe. Acta Neurochirurgica 148, 255–268 (doi:10.1007/s00701-005-0651-y).
Tasker RC, Morris KP, Forsyth RJ, Hawley CA & Parslow RC. 2006. Severe head injury in children:
Emergency access to neurosurgery in the United Kingdom. Emergency Medicine Journal 23, 519–522.
Tenovuo O. 2010. Tietoa aivovammoista. Retrieved from: http://www.ollitenovuo.com/75. Cited 12th January
2013. In Finnish.
Thompson G, McClement S & Deanick P. 2006. Nurses’ perceptions of quality end-of-life care on an acute
medical ward. Journal of Advanced Nursing 53(2), 169–177.
Thompson HJ, McIvoy L & Meyer K. 2009. Nursing management of adults with severe traumatic brain injury.
AANN Clinical Practice Guideline Series. Retrieved from:
http://www.guideline.gov/content.aspx?id=13576&search. Cited April 2011.
39
Tomberg T, Toomela A, Ennok M & Tikk A. 2007. Changes in coping strategies, social support, optimism and
health-related quality of life following traumatic brain injury: A longitudinal study. Brain Injury 21(5), 497–
488.
van der Woert N, Seppänen S & Keeken P. 2007. NeuroBlend – Competence based blended learning
framework for life-long vocational learning of neuroscience nurses. Publishing series at Mikkeli University of
Applied Sciences, Serie A. Retrieved from:
http://www.neurorevalidatie.nl/assets/files/NeuroBlend%20files/NeuroBlend_Book.pdf. Cited 14th January
2013.
Vanderploeg RD, Belanger HG, Duchnick JD & Curtiss G. 2007. Awareness problems following moderate to
severe traumatic brain injury: Prevalence, assessment methods, and injury correlates. Journal of Rehabilitation
Research & Development 44(7), 937–50.
Verhaeghe S, Defloor T, Zuuren F, Duijnstee M & Grypdonck M. 2005a. The needs and experiences of family
members of adult patients in an intensive care unit: a review of the literature. Journal of Clinical Nursing 14,
501–509.
*Verhaeghe S, Defloor T & Grypdonck M. 2005b. Stress and coping among families of patients with traumatic
brain injury: A review of literature. Journal of Clinical Nursing 14, 1004–12.
Verhaeghe S, Zuuren F, Defloor T, Duijnstee M & Grypdonck M. 2007. How does information influence hope
in family members of traumatic coma patients in intensive care unit? Journal of Clinical Nursing 16, 1488–
1497.
Verhaeghe S, Van Zuuren F, Grypdonck M, Duijnstee M & Defloor T. 2010a. The focus of family members’
functioning in the acute phase of traumatic coma. Part one: The initial battle and protecting life. Journal of
Clinical Nursing 19, 574–582.
Verhaeghe S, Van Zuuren F, Grypdonck M, Duijnstee M & Defloor T. 2010b. The focus of family members’
functioning in the acute phase of traumatic coma. Part two: Protecting from suffering and protecting what
remains to rebuild life. Journal of Clinical Nursing 19, 583–589.
Virta-Helenius M, Mäenpää I & Eriksson E. 2004. Hoitotyön päivittäinen kirjaaminen neurologian
vuodeosastoilla. Tutkiva Hoitotyö 2(2), 10–15. In Finnish.
Watts DD, Gibbons S, Kurzweil D. 2011. Mild traumatic brain injury: A survey of perceived knowledge and
learning preferences of military and civilian nurses. Journal of Neuroscience Nursing 43(3), 122–129.
*Wells R, Dywan J & Dumas J. 2005. Life satisfaction and distress in family caregivers related to specific
behavioral changes after traumatic brain injury. Brain Injury 19, 1105–1115.
Wideheim A-K, Edvardsson T, Pahlson A & Ahlstrom G. 2002. A family’s perspective on living with highly
malignant brain tumor. Cancer Nursing 25(3), 236–244.
*Winstanley J, Simpson G, Tate R & Myles B. 2006. Early indicators and contributors to psychological distress
in relatives during rehabilitation following severe traumatic brain injury: Findings from the brain injury
outcomes study. Journal of Head Trauma Rehabilitation 21(6), 453–466.
*Wongvatunyu S & Porter E. 2005. Mothers’ experience of helping young adults with traumatic brain injury.
Journal of Nursing Scholarship 37(1), 48–56.
40
Yetman L. 2008. Neuroscience nurses caring for family members of patients with acquired brain injury in
acute ward settings: Nursing defensively in a double bind. Canadian Journal of Neuroscience Nursing 30, 26–
33.
Åstedt-Kurki P, Jussila A-L, Koponen L, Lehto P, Maijala H, Paavilainen R & Potinkara H. 2008. Kohti
perheen hyvää hoitamista. Helsinki: WSOY.
Öhman J, Alaranta H, Kaipio M-L, Malmivaara A, Nybo T, Ojala M, Randell T, Salonen O, Turkka J, Vataja R
& Ylinen A. 2008. Aivovammat. Käypähoito -suositus. Suomalainen lääkäriseura. [In English: Brain injuries.
Current care recommendation. The Finnish Medical Society] retrieved from Duodecim.www.kaypahoito.fi
Özbudak DS, Gülderen G & Füsun K. 2006. Comparison of rehabilitation outcome in patients with aphasic
and non-aphasic traumatic brain injury. Journal of Rehabilitation Medicine 38(1), 68–71.
*Included also in systematic review
1 /
5
Ap
pen
dix
1
To b
e co
nti
nu
ed
Stu
die
s co
nce
rn
ing
su
pp
ort
of
the
tra
um
ati
c b
rain
in
jury
pa
tien
t fa
mil
y m
em
ber
s y
ears
20
04-2
01
0
Ref
eren
ce
Aim
M
eth
od
an
d s
am
ple
F
ind
ing
s
Ara
ngo
-Las
pri
lla
et a
l. 2
01
0
US
A
Fam
ily n
eed
s in
car
egiv
ers
of
ind
ivid
ual
s w
ith t
rau
mat
ic b
rain
inju
ry f
rom
Co
lom
bia
, S
outh
Am
eric
a
To
det
erm
ine
the
mo
st a
nd
lea
st
imp
ort
ant
fam
ily n
eed
s in
a g
roup
of
fam
ily c
aregiv
ers
of
ind
ivid
uals
of
TB
I fr
om
Cal
i, C
olo
mb
ia.
Cro
ss-s
ecti
onal
des
crip
tive
stud
y
29
fam
ily c
areg
iver
s
The
Fam
ily N
eed
s
Ques
tio
nnai
re
Hea
lth i
nfo
rmat
ion,
com
mu
nit
y s
up
po
rt n
etw
ork
and
pro
fess
ional
sup
po
rt n
etw
ork
wer
e th
e m
ost
im
po
rtan
t nee
ds
rep
ort
ed b
y c
areg
iver
s. T
he
mo
st f
req
uentl
y m
et n
eed
s w
ere
hea
lth i
nfo
rmat
ion,
invo
lvem
ent
wit
h c
are,
inst
rum
enta
l su
pp
ort
.
The
mo
st u
nm
et
nee
ds
wer
e em
oti
onal
sup
po
rt,
inst
rum
enta
l
sup
po
rt a
nd
pro
fess
ional
sup
po
rt.
Chro
nis
ter
et a
l. 2
01
0
US
A
The
asso
ciat
ion o
f st
ress
-co
pin
g
var
iab
les
to q
ual
ity o
f li
fe a
mo
ng
care
giv
ers
of
ind
ivid
ual
s w
ith
trau
mati
c b
rain
inju
ry
To
det
erm
ine
the
degre
e to
wh
ich
stre
ss-c
op
ing v
aria
ble
s co
ntr
ibute
to
qual
ity o
f li
fe a
mo
ng c
areg
ivers
of
ind
ivid
ual
s w
ith t
rau
mat
ic b
rain
inju
ry.
10
8 c
areg
iver
s
Surv
ey
The
full
mo
del
acc
ou
nte
d f
or
68
% o
f th
e var
iance
in Q
OL
;
care
giv
ing a
pp
rais
al,
per
ceiv
ed s
oci
al s
up
po
rt a
nd
fam
ily n
eed
s
rem
ained
sig
nif
icant
afte
r o
ther
stre
ss-c
op
ing v
aria
ble
s w
ere
par
tial
led
.
Kee
nan
& J
ose
ph 2
01
0
Can
ada
The
nee
ds
of
fam
ily m
em
ber
s o
f
sever
e tr
aum
atic
bra
in i
nju
ry
pat
ients
duri
ng c
riti
cal
and
acute
care
: A
qual
itat
ive
stud
y.
To
id
enti
fy t
he
nee
ds
exp
ress
ed
by
fam
ily m
em
ber
s as
pat
ients
wit
h
sever
e in
jury
pro
gre
ss t
hro
ug
h t
hei
r
reco
ver
y.
25
fam
ily m
em
ber
s
Qual
itat
ive
stud
y
Fam
ily m
em
ber
s id
enti
fied
a v
arie
ty o
f nee
ds
duri
ng t
he
acute
phas
e ho
spit
aliz
atio
n p
erio
d. A
t ti
me
1 t
her
e w
ere
4 m
ain
them
es t
hat
des
crib
ed t
he
traj
ecto
ry o
f th
e f
am
ilie
s’ e
xp
erie
nce
s:
get
ting t
he
new
s, u
nce
rtai
nty
, m
akin
g s
ense
of
the
new
s, m
ovin
g
on. A
t ti
me
2 t
hem
es o
f th
e fa
mil
y e
xp
erie
nce
incl
ud
ed
unce
rtai
nty
, lo
okin
g f
or
pro
gre
ss,
tran
siti
on a
nd
let
ting
go
/buil
din
g a
new
co
nnec
tio
n.
Co
rnw
ell
et a
l. 2
00
9
Aust
rali
a
Sup
po
rtin
g n
eed
s o
f yo
ung a
dult
s
wit
h a
cquir
ed b
rain
inju
ry d
uri
ng
tran
siti
on f
rom
ho
spit
al t
o h
om
e
To
exp
lore
the
avai
lab
ilit
y a
nd
per
ceiv
ed a
deq
uac
y o
f se
rvic
e
sup
po
rt f
or
yo
unger
peo
ple
wit
h A
BI
and
thei
r fa
mil
ies
in Q
uee
nsl
and
duri
ng t
he
transi
tio
n p
has
e fr
om
the
per
spec
tive
of
serv
ice
pro
vid
ers.
12
ser
vic
e p
rovid
ers
Qual
itat
ive
stud
y
Ser
vic
es i
ncl
ud
ed r
ehab
ilit
atio
n,
consu
ltancy,
ed
uca
tio
n a
nd
trai
nin
g,
and
pra
ctic
al a
nd
em
oti
onal
sup
po
rts.
Exis
ting b
arri
ers
to s
ervic
e p
rovis
ion w
ere
clust
ered
und
er t
hre
e key t
hem
es:
serv
ice
infr
ast
ruct
ure
, tr
ansi
tio
n s
up
po
rt,
and
tra
nsi
tio
n c
onte
xt.
Kre
uze
r et
al.
20
09
A p
reli
min
ary i
nves
tigat
ion o
f th
e
bra
in i
nju
ry f
am
ily i
nte
rven
tio
n:
Imp
act
on f
am
ily m
em
ber
s
US
A
To
eval
uat
e th
e b
enefi
ts o
f th
e B
rain
inju
ry f
am
ily i
nte
rven
tio
n f
or
fam
ilie
s
of
per
sons
wit
h a
cquir
ed b
rain
inju
ry
and
id
enti
fy f
acto
rs r
elat
ed t
o
outc
om
es.
79
fam
ilie
s
Inte
rventi
on s
tud
y
Bef
ore
and
aft
er t
reat
ment,
un
mar
ried
car
egiv
ers
rep
ort
ed m
ore
un
met
nee
ds
and
gre
ater
ob
stac
les
to s
ervic
es.
Po
st-t
reat
men
t
dif
fere
nce
s in
fam
ily m
em
ber
s’ p
sycho
logic
al d
istr
ess,
sati
sfac
tio
n w
ith l
ife
and
fu
nct
ionin
g w
ere
no
t id
enti
fied
.
Lefe
bvre
et
al.
20
08
Can
ada
Per
spec
tives
of
surv
ivo
rs o
f
trau
mati
c b
rain
inju
ry a
nd
their
care
giv
ers
on l
on
g-t
erm
so
cial
inte
gra
tio
n
To
do
cum
ent
the
rep
ercu
ssio
ns
of
TB
I o
n v
icti
ms’
lo
ng
-ter
m s
ocia
l
inte
gra
tio
n
(10
yea
rs p
ost
-tra
um
a) a
nd
the
contr
ibuti
on m
ade
by t
he
serv
ices
rece
ived
fro
m t
he
po
int
of
vie
w o
f
TB
I vic
tim
s and
fam
ily c
areg
iver
s.
22
ind
ivid
ual
s w
ho
had
sust
ained
a m
od
erat
e o
r
sever
e T
BI
and
21
fam
ily
care
giv
ers.
Qual
itat
ive
stud
y
The
resu
lts
sho
w t
hat
TB
I is
an e
xp
erie
nce
that
co
nti
nues
to
pre
sent
dif
ficult
ies,
ev
en 1
0 y
ears
aft
er t
he
acci
dent,
and
that
dif
fere
nt
bar
rier
s co
ntr
ibute
to
this
dif
ficult
y:
no
t go
ing b
ack
to
wo
rk,
dep
ress
ive
epis
od
es,
pro
ble
ms
in r
elat
ionsh
ips
and
seq
uel
ae.
Fam
ily c
areg
iver
s m
ust
hel
p T
BI
vic
tim
s co
nfr
on
t th
e
bar
rier
s in
thei
r p
ath.
2 /
5
To b
e co
nti
nu
ed
Ref
eren
ce
Aim
M
eth
od
an
d s
am
ple
F
ind
ing
s
Chan J
. 2
00
7
Car
ers
per
spec
tive
on r
esp
ite
for
per
sons
wit
h a
cquir
ed b
rain
in
jury
Aust
rali
a
To
ad
dre
ss t
he
lack
of
dat
a o
n r
esp
ite
care
and
peo
ple
wit
h a
cquir
ed b
rain
inju
ry f
rom
the
per
spec
tive
of
care
rs.
85
car
ers
Surv
ey
The
char
acte
rist
ics
of
care
rs w
ere
consi
stent
wit
h t
he
rese
arch
lite
ratu
re o
n r
esp
ite
and
acq
uir
ed b
rain
inju
ry,
wit
h c
arer
s b
eing
mai
nly
fem
ale
and
ther
e b
ein
g a
rel
iance
on a
n i
nfo
rmal
net
wo
rk t
o a
ssis
t in
the
care
. C
arer
s al
so r
epo
rted
that
car
ing
pre
ven
ted
them
fro
m o
bta
inin
g g
ain
ful
em
plo
ym
ent.
Sever
al
fact
ors
wer
e si
gnif
icantl
y a
sso
cia
ted
wit
h t
he
use
of
resp
ite,
thes
e w
ere
care
rs’
sin
gle
mar
ital
sta
tus;
and
the
per
son w
ith
acq
uir
ed b
rain
inju
ry’s
sev
erit
y o
f d
isab
ilit
y, h
igh l
evel
of
dep
end
ency a
nd
nu
mb
er o
f d
ays
spent
in a
co
ma.
Car
ers
also
rep
ort
ed o
ther
fac
tors
that
mig
ht
infl
uence
them
to
use
res
pit
e
and
they i
den
tifi
ed t
hei
r ex
pec
tati
ons
of
resp
ite.
Char
les
N e
t al
. 2
00
7
Fam
ilie
s li
vin
g w
ith a
cquir
ed b
rain
inju
ry: A
mu
ltip
le f
am
ily g
rou
p
exp
erie
nce
Aust
rali
a
To
des
crib
e m
ult
i-fa
mil
y g
rou
p w
ork
wit
h f
am
ilie
s w
ith a
par
ent
wit
h a
n
acq
uir
ed b
rain
inju
ry
Six
fam
ilie
s
Qual
itat
ive
and
quan
tita
tive
rese
arch
met
ho
ds,
wit
h p
re-,
po
st-
gro
up
and
3-m
onth
fo
llo
w-
up
mea
sure
s o
f in
div
idual
,
coup
le a
nd
fam
ily
funct
ionin
g.
Fam
ilie
s w
ere
uneq
uiv
oca
lly p
osi
tive
abo
ut
thei
r p
arti
cip
atio
n i
n
the
gro
up
wit
h b
enefi
ts i
nclu
din
g r
educe
d f
eeli
ng
s o
f sh
am
e an
d
iso
lati
on,
pro
vis
ion o
f m
utu
al s
up
po
rt,
incr
ease
d u
nd
erst
and
ing
of
bra
in i
nju
ry,
shar
ing o
f d
iffi
cult
exp
erie
nce
s and
mo
vem
ent
fro
m b
lam
e to
co
mp
ass
ion.
Har
t J.
et
al. 2
007
Rac
ial
dif
fere
nce
s in
car
egiv
ing
pat
tern
s, c
areg
iver
em
oti
onal
funct
ion,
and
so
urc
es
of
em
oti
onal
sup
po
rt f
oll
ow
ing t
rau
mat
ic b
rain
inju
ry
US
A
To
co
mp
are
whit
e and
Afr
ican
Am
eric
an c
areg
iver
s o
f p
eop
le w
ith
mo
der
ate
to s
ever
e tr
aum
atic
bra
in
inju
ry (
TB
I) r
egar
din
g c
areg
ivin
g
pat
tern
s, e
mo
tio
nal
fu
nct
ion a
nd
lif
e
sati
sfac
tio
n,
and
pre
ferr
ed s
up
po
rts.
25
6 c
areg
iver
s
Bri
ef S
ym
pto
m I
nvento
ry–
18
, S
atis
fact
ion
Wit
h L
ife
Sca
le.
Pro
spec
tive,
ob
serv
atio
nal
stud
y;
1,
2,
or
5 y
ears
po
st-
TB
I.
Rac
es d
iffe
red
as
to k
insh
ip p
atte
rns,
wit
h m
ore
wh
ite
care
giv
ers
incl
ud
ing s
po
use
s and
mo
re A
fric
an A
mer
icans
incl
ud
ing “
oth
er r
elat
ives
”. A
fric
an A
mer
ican
s sp
ent
sig
nif
icantl
y m
ore
tim
e in
dir
ect
car
egiv
ing,
and
rep
ort
ed m
ore
dep
ress
ion. W
hit
es
wer
e m
ore
lik
ely t
o u
se p
rofe
ssio
nal
ser
vic
es
for
em
oti
onal
sup
po
rt.
Acr
oss
rac
es, T
BI
care
giv
er e
mo
tio
nal
hea
lth i
s aff
ecte
d b
y t
he
funct
ional
level
of
the
surv
ivo
r. A
fric
an A
mer
ican c
areg
iver
s
may b
e at
ris
k o
f w
ors
e em
oti
onal
co
nse
quence
s d
ue
to w
ors
e
surv
ivo
r o
utc
om
es,
yet
may u
nd
eruti
lize
pro
fess
ional
serv
ices
.
Lefe
bvre
H.
et a
l. 2
00
7
Inte
rdis
cip
linar
y f
am
ily
inte
rventi
on p
rogra
m: A
par
tner
ship
am
on
g h
ealt
h
pro
fess
ional
s, t
rau
mat
ic i
nju
ry
pat
ients
, and
car
egiv
ing r
elat
ives
Can
ada
To
inves
tigate
the
del
iver
y o
f ca
re
afte
r tr
aum
atic
bra
in i
nju
ry a
nd
the
typ
e o
f re
lati
on
ship
that
dev
elo
ps
bet
wee
n t
he
fam
ily a
nd
the
pro
fess
ional
s.
17
hea
lth p
rofe
ssio
nal
s
The
stud
y m
etho
do
log
y
was
mix
ed:
a q
uanti
tati
ve
ques
tio
nnai
re,
wh
ile
their
exp
erie
nce
and
lea
rnin
g
wer
e d
ocu
men
ted
in s
em
i-
guid
ed,
qual
itat
ive
inte
rvie
ws
cond
uct
ed
bef
ore
and
aft
er t
rain
ing.
The
resu
lts
sho
w t
hat
the
trai
nin
g s
tim
ula
ted
per
sonal
and
pro
fess
ional
refl
ecti
ve
tho
ug
ht
in p
arti
cip
ants
and
fo
ster
ed t
he
forg
ing o
f an i
nte
rdis
cip
linar
y p
artn
ersh
ip. T
he
trai
nin
g h
ad a
po
siti
ve
imp
act
on
co
mm
unic
atio
n b
etw
een p
rofe
ssio
nal
s and
wit
h t
he
fam
ilie
s and
hel
ped
to
dev
elo
p a
sen
se o
f se
lf-e
ffic
acy
am
on
g h
ealt
h p
rofe
ssio
nal
s.
3 /
5
To b
e co
nti
nu
ed
Ref
eren
ce
Aim
M
eth
od
an
d s
am
ple
F
ind
ing
s
McC
abe
et a
l. 2
00
7
Co
mm
unit
y r
einte
gra
tio
n f
oll
ow
ing
acq
uir
ed b
rain
inju
ry
20
07
Can
ada
To
eval
uat
e th
e in
terv
enti
on
s and
stra
tegie
s u
sed
to
enab
le t
ransi
tio
n
fro
m a
cute
car
e o
r p
ost
-acu
te
rehab
ilit
atio
n t
o t
he
com
mu
nit
y
foll
ow
ing b
rain
inju
ry.
Lit
erat
ure
rev
iew
Fro
m 3
8 s
tud
ies
eval
uate
d
for
this
revie
w,
only
one
RC
T w
as f
ou
nd
.
That
RC
T p
rovid
ed m
od
erat
e ev
iden
ce t
hat
beh
avio
ura
l
man
agem
ent,
co
up
led
wit
h c
areg
iver
ed
uca
tio
n,
did
no
t hel
p t
o
imp
rove
care
giv
er b
urd
en.
Ro
dger
s M
L.
et a
l.2
00
7
Ad
apti
ng m
ult
iple
-fam
ily g
roup
trea
tment
for
bra
in a
nd
sp
inal
co
rd
inju
ry i
nte
rventi
on d
evel
op
ment
and
pre
lim
inar
y o
utc
om
es
US
A
The
purp
ose
of
the
pre
sent
field
-
init
iate
d d
evel
op
men
t p
roje
ct w
as
to
adap
t a
fam
ily p
sycho
educa
tio
n
mo
del
, m
ult
iple
-fam
ily g
roup
trea
tment
(MF
GT
), f
or
per
sons
wit
h
bra
in a
nd
sp
inal
co
rd i
nju
ry a
nd
thei
r
fam
ilie
s.
27
surv
ivo
rs a
nd
28
care
giv
ers.
Sem
i-
stru
cture
d i
nte
rvie
ws
and
focu
s gro
up
s w
ere
cond
uct
ed w
ith
par
tici
pan
ts.
Quanti
tati
ve
and
qual
itat
ive
meth
od
s
Surv
ivo
rs r
epo
rted
a d
ecre
ase
in d
epre
ssiv
e sy
mp
tom
s an
d
anger
exp
ress
ion t
ow
ard
oth
ers
as w
ell
as a
n i
ncr
ease
in l
ife
sati
sfac
tio
n.
Car
egiv
ers
rep
ort
ed a
sig
nif
icant
red
uct
ion i
n
burd
en. T
he
them
es d
eriv
ed f
rom
the
qual
itat
ive
anal
ysi
s
add
ress
ed t
he
no
rmal
izat
ion o
f th
e ca
regiv
ing e
xp
erie
nce
,
imp
ort
ance
of
soci
aliz
atio
n,
imp
rovem
ent
in a
var
iety
of
cop
ing
skil
ls,
and
ed
uca
tio
n a
bo
ut
the i
nju
ries
.
Ro
tond
i A
J. e
t al
. 2
00
7
A q
ual
itat
ive
nee
ds
asse
ssm
en
t o
f
per
sons
who
have
exp
erie
nce
d
trau
mati
c b
rain
inju
ry a
nd
their
pri
mar
y f
am
ily c
areg
iver
s
US
A
To
det
erm
ine
the
exp
ress
ed n
eed
s o
f
per
sons
wit
h t
rau
mat
ic b
rain
inju
ry
(TB
I) a
nd
thei
r p
rim
ary f
am
ily
care
giv
ers.
80
per
sons
wit
h T
BI,
wit
h
an a
ver
age
tim
e si
nce
thei
r
mo
st s
ever
e T
BI
of
5.8
yea
rs,
and
85
pri
mar
y
sup
po
rt p
erso
ns.
Sem
i-st
ruct
ure
d i
nte
rvie
ws
wit
h c
onte
nt-
anal
yti
c
tech
niq
ues
to
id
enti
fy
resp
ond
ents
’ nee
ds.
Res
po
nd
ents
des
crib
ed t
hei
r n
eed
s via
phas
es
that
par
alle
led
tran
siti
ons
in s
etti
ngs,
tre
atm
ents
and
res
po
nsi
bil
itie
s (i
.e.,
acu
te
care
, in
pat
ient
rehab
ilit
atio
n,
retu
rn h
om
e, a
nd
liv
ing i
n t
he
com
mu
nit
y).
Pro
min
ent
them
es
duri
ng i
np
atie
nt
phase
s in
clu
ded
pro
vid
er q
ual
ity,
em
oti
onal
su
pp
ort
, an
d u
nd
erst
and
ing t
he
inju
ries
. P
rom
inent
them
es
du
ring t
he
latt
er 2
phas
es i
ncl
ud
ed
guid
ance
, li
fe p
lan
nin
g,
com
munit
y i
nte
gra
tio
n,
and
beh
avio
ura
l
and
em
oti
onal
iss
ues
.
Murr
ay H
. et
al.
20
06
Ass
essm
ent
of
fam
ily n
eed
s
foll
ow
ing a
cquir
ed b
rain
inju
ry i
n
Sas
katc
hew
an
Can
ada
The
obje
ctiv
e w
as t
o l
earn
wh
at t
he
fam
ily m
em
ber
s o
f in
div
idual
s w
ith
acq
uir
ed b
rain
inju
ry (
AB
I) p
erce
ived
as i
mp
ort
ant
nee
ds
and
to
what
exte
nt
thes
e nee
ds
are
bei
ng m
et.
66
ind
ivid
ual
s w
ho
car
e
for
som
eone
wit
h a
n A
BI
and
who
rec
eive
serv
ice
fro
m t
he
Sas
kat
chew
an
So
uth
AB
I O
utr
each T
eam
com
ple
ted
the
Fam
ily
Nee
ds
Ques
tio
nnai
re
(FN
Q).
The
mo
st i
mp
ort
ant
nee
ds
wer
e re
late
d t
o h
ealt
h i
nfo
rmat
ion
.
Mo
st n
eed
s p
erce
ived
as
un
met
wer
e re
late
d t
o e
mo
tio
nal
sup
po
rt.
Car
egiv
ers
ind
icat
ed t
hat
havin
g h
onest
, ac
cura
te,
com
pre
hen
sive
info
rmat
ion r
egar
din
g t
he
AB
I su
rviv
or
is
imp
ort
ant.
Resp
ond
ents
als
o i
nd
icat
ed t
hat
ap
pro
xim
ately
hal
f
of
the
nee
ds
have
go
ne
un
met
or
only
par
tly m
et. T
his
stu
dy
hig
hli
ghts
the
imp
ort
ance
fo
r se
rvic
e p
rovid
ers
to a
sses
s fa
mil
y
nee
ds
in o
rder
to
min
imiz
e d
istr
ess
in c
aregiv
ers,
mai
nte
nan
ce
of
the
wel
l-b
eing o
f w
ho
m i
s in
tegra
l in
the
sup
po
rt o
f th
e
per
son w
ith A
BI.
Win
stan
ley J
. 2
00
6
Ear
ly i
nd
icat
ors
and
co
ntr
ibuto
rs t
o
psy
cho
logic
al d
istr
ess
in r
elat
ives
duri
ng r
ehab
ilit
atio
n f
oll
ow
ing
sever
e tr
aum
atic
bra
in i
nju
ry
Aust
rali
a
To
dev
elo
p a
mult
ivar
iate
mo
del
of
the
dynam
ic i
nte
ract
ions
am
ong k
ey
var
iab
les
asso
ciat
ed w
ith r
elat
ive
dis
tres
s and
dis
rup
ted
fam
ily
funct
ionin
g a
fter
tra
um
atic
bra
in
inju
ry (
TB
I).
A r
elat
ive
sam
ple
(p
aren
ts,
spo
use
s, c
lose
oth
ers;
N =
13
4)
Ques
tio
nnar
e
The
over
all
mo
del
acc
ou
nte
d f
or
sub
stan
tial
pro
po
rtio
ns
of
the
var
iance
in p
sycho
logic
al
dis
tres
s an
d f
am
ily f
unct
ionin
g.
Imp
ort
antl
y, t
he
dis
tres
s exp
erie
nce
d b
y r
elat
ives
was
no
t d
ue
to
the
dir
ect
imp
act
of
the
neuro
beh
avio
ura
l im
pai
rmen
ts,
but
the
effe
ct o
f th
ese
imp
airm
ents
was
med
iate
d b
y t
he
deg
ree
of
com
mu
nit
y p
arti
cip
atio
n a
chie
ved
by t
he
per
son w
ith
TB
I.
4 /
5
Ref
eren
ce
Aim
M
eth
od
an
d s
am
ple
F
ind
ing
s
Ro
tond
i A
J. e
t al
. 2
00
5
An i
nte
ract
ive W
eb-b
ased
inte
rventi
on f
or
per
sons
wit
h T
BI
and
thei
r fa
mil
ies.
Use
and
eval
uati
on b
y f
em
ale
sig
nif
icant
oth
ers
US
A
To
ass
ess
the
feas
ibil
ity o
f p
rovid
ing
in-h
om
e ad
junct
ive
and
sup
po
rtiv
e
serv
ices
fo
r p
erso
ns
wit
h t
rau
mat
ic
bra
in i
nju
ry (
TB
I) a
nd
thei
r fa
mil
ies
via
a w
ebsi
te.
19
fam
ilie
s w
ere
pro
vid
ed
wit
h a
cces
s to
the
web
site
inte
rventi
on f
or
6 m
onth
s.
Ad
ult
wo
men w
ho
wer
e
the
sig
nif
ican
t o
ther
s o
f
adult
mal
es
wit
h m
od
erat
e-
to-s
ever
e T
BI.
Val
ue
and
eas
e o
f use
of
the
web
site
. E
ach p
arti
cip
ant’
s usa
ge
of
the
web
site
was
auto
mat
ical
ly t
rack
ed i
ncl
ud
ing e
ach p
age
vis
ited
, ti
me
of
day,
and
tim
e sp
ent
on t
he
pag
e. F
em
ale
sig
nif
icant
oth
ers
fou
nd
the
web
site
to
be
val
uab
le a
nd
eas
y t
o
use
, an
d u
sed
it
thro
ug
ho
ut
the 6
-mo
nth
per
iod
. T
he
onli
ne
sup
po
rt g
roup
was
the
mo
st u
sed
and
val
ued
mo
du
le.
Fam
ily
care
giv
ers
wil
l u
se W
eb-b
ased
inte
rventi
ons
to h
elp
mee
t th
eir
nee
ds
for
soci
al s
up
po
rt,
info
rmat
ion,
and
guid
ance
fo
llo
win
g
the
retu
rn h
om
e o
f p
erso
ns
wit
h T
BI.
Sin
nakar
up
pan
et
al.
20
05
Hea
d i
nju
ry a
nd
fam
ily c
arer
s: a
pil
ot
stud
y t
o i
nvest
igat
e an
inno
vat
ive
com
mu
nit
y-b
ased
educa
tio
nal
pro
gra
mm
e fo
r fa
mil
y
care
rs a
nd
pat
ients
UK
To
eval
uat
e th
e im
pac
t o
f an
educa
tio
nal
pro
gra
mm
e fo
r fa
mil
y
care
rs a
nd
thei
r hea
d-i
nju
red
rel
ativ
es
in r
educi
ng c
arer
and
pat
ient
psy
cho
logic
al d
istr
ess
and
im
pro
vin
g
thei
r co
pin
g a
bil
ity.
The
stud
y c
om
pri
sed
exp
erim
enta
l and
co
ntr
ol
sam
ple
s ea
ch w
ith c
arer
(N
= 5
0)
and
pat
ient
(N =
49
)
gro
up
s. A
ll g
roup
s w
ere
asse
ssed
pre
- an
d p
ost
-
inte
rventi
on a
nd
at
3-
mo
nth
fo
llo
w-u
p. T
he
pat
ient
sam
ple
was
furt
her
asse
ssed
usi
ng c
og
nit
ive
mea
sure
s.
Ther
e w
as
evid
ence
of
red
uct
ion i
n p
sych
olo
gic
al d
istr
ess
in t
he
exp
erim
enta
l ca
rer
gro
up
fo
llo
win
g t
he
educa
tio
nal
inp
ut,
bu
t
thes
e re
sult
s w
ere
no
t st
atis
tical
ly s
ignif
ican
t. H
ow
ever
, th
e
exp
erim
enta
l p
atie
nt
po
pula
tio
n a
t fo
llo
w-u
p a
sses
smen
t
sho
wed
sta
tist
ical
ly s
ignif
ican
t im
pro
vem
ents
.
Ver
hae
ghe
et a
l. 2
00
5
Str
ess
and
co
pin
g a
mo
ng f
am
ilie
s
of
pat
ients
wit
h t
rau
mat
ic b
rain
inju
ry:
a re
vie
w o
f t
he
lite
ratu
re
20
05
Bel
giu
m
To
str
uct
ure
the
avai
lab
le i
nfo
rmat
ion
on t
he
psy
cho
log
ical
rea
ctio
ns
of
fam
ily m
em
ber
s co
nfr
onte
d w
ith
trau
mati
c b
rain
inju
ry.
Lit
erat
ure
rev
iew
The
level
of
stre
ss e
xp
erie
nce
d b
y t
he
fam
ily m
em
ber
s o
f
pat
ients
wh
o h
ave
trau
mat
ic b
rain
inju
ry i
s su
ch t
hat
pro
fess
ional
in
terv
enti
on i
s ap
pro
pri
ate,
even
aft
er 1
0-1
5 y
ear
s.
No
t th
e se
ver
ity o
f th
e in
jury
but
the
nat
ure
of
the
inju
ries
det
erm
ines
the
level
of
stre
ss.
Par
tner
s ex
per
ience
mo
re s
tres
s
than
par
ents
. Y
oun
g f
am
ilie
s w
ith l
ittl
e so
cial
sup
po
rt,
finan
cial
,
psy
chia
tric
and
/or
med
ical
pro
ble
ms
are
the
mo
st v
uln
erab
le.
The
bet
ter
fam
ily m
em
ber
s ca
n c
op
e w
ith t
he
situ
atio
n,
the
bet
ter
the
pat
ient’
s re
cover
y. A
mo
ng o
ther
thin
gs,
co
pin
g i
s
infl
uence
d b
y p
rofe
ssio
nal
sup
po
rt.
5 /
5
Ref
eren
ce
Aim
M
eth
od
an
d s
am
ple
F
ind
ing
s
Wel
ls e
t al
. 2
00
5
Lif
e sa
tisf
acti
on a
nd
dis
tres
s in
fam
ily c
aregiv
ers
as r
elat
ed t
o
spec
ific
beh
avio
ura
l changes
afte
r
trau
mati
c b
rain
inju
ry
Can
ada
To
pre
dic
t th
e lo
ng
-ter
m o
utc
om
e o
f
tho
se c
arin
g f
or
fam
ily m
em
ber
s w
ho
hav
e su
stai
ned
a t
rau
mati
c b
rain
inju
ry (
TB
I).
f72
ad
ult
surv
ivo
rs a
nd
fam
ily m
em
ber
s
A m
ult
ivar
iate
ap
pro
ach,
self
-ad
min
iste
red
ques
tio
nnai
re p
ackages
wer
e co
llec
ted
Fam
ily m
em
ber
s nee
d i
nfo
rmat
ion a
bo
ut
sym
pto
ms
like
irri
tab
ilit
y, p
oo
r im
puls
e co
ntr
ol,
lac
k o
f em
pat
hy o
n t
he
par
t o
f
the
TB
I p
atie
nt,
ho
stil
ity,
defi
cit
s in
the
abil
ity t
o p
lan a
nd
to
fore
see
futu
re c
onse
quence
s.
Fam
ily m
em
ber
s gener
ally
rep
ort
ed h
igher
level
s o
f sa
tisf
acti
on
than
dis
sati
sfac
tio
n w
ith t
hei
r ca
regiv
ing r
ole
. T
he
typ
e o
f
neu
rob
ehavio
ura
l d
efic
it a
nd
the
app
roac
hes
tak
en t
o c
op
e w
ith
stre
ss h
ad s
pec
ific
eff
ects
on e
ach d
imensi
on o
f ca
regiv
er
outc
om
e
Wo
ng
vat
un
yu S
. et
al.
20
05
Mo
ther
s’ e
xp
erie
nce
of
hel
pin
g
yo
ung a
dult
s w
ith t
rau
mati
c b
rain
inju
ry
Thai
land
To
des
crib
e m
oth
ers’
exp
erie
nce
of
hel
pin
g y
oun
g a
dult
s w
ith t
rau
mat
ic
bra
in i
nju
ry (
TB
I).
A c
onvenie
nce
sam
ple
of
par
tici
pan
ts f
rom
sup
po
rt
gro
up
s fo
r p
aren
ts o
f
yo
ung a
dult
s w
ith
TB
I
A d
esc
rip
tive
phen
om
eno
logic
al
met
ho
d
The
five
pheno
mena
of
the
mo
ther
s’ e
xp
erie
nce
s w
ere:
reco
nnec
ting m
y c
hil
d’s
bra
in,
consi
der
ing m
y c
hil
d’s
safe
ty,
mak
ing o
ur
lives
as
no
rmal
as
po
ssib
le,
dea
ling w
ith o
ur
big
ges
t
pro
ble
m,
and
ad
vo
cati
ng f
or
my c
hil
d.
Knea
fsey &
Gaw
tho
rpe
20
04
Hea
d i
nju
ry:
Lo
ng
-ter
m
conse
quence
s fo
r p
atie
nts
and
fam
ilie
s and
im
pli
cati
ons
for
nurs
es
UK
To
stu
dy t
he
imp
act
of
hea
d i
nju
ry
and
po
st-i
nju
ry d
isab
ilit
ies
on
pat
ients
’ an
d f
am
ilie
s’ l
ives
.
Lit
erat
ure
rev
iew
In
the
acute
phas
e ac
cura
te a
sses
smen
t and
inte
rpre
tati
on o
f
neu
rolo
gic
al
stat
us
is e
ssenti
al t
o p
red
ict
pat
ient
outc
om
es,
as
wel
l as
tell
ing p
ote
nti
al e
ffec
ts o
f ra
ised
intr
acra
nia
l p
ress
ure
asso
ciat
ed w
ith t
rachea
l su
ctio
nin
g.
Fam
ily m
em
ber
s nee
d
info
rmat
ion a
bo
ut
TB
I p
atie
nts
’ b
ehavio
ura
l p
rob
lem
s, a
git
ati
on
and
aggre
ssio
n,
med
icat
ion a
nd
its
sid
e ef
fect
s, p
hysi
cal
sym
pto
ms
such
as
lim
b w
eak
nes
s, p
aral
ysi
s, s
tiff
nes
s, d
istu
rbed
gai
t, c
ontr
actu
res,
bal
ance
im
pai
rmen
t, s
enso
ry i
mp
airm
ent
and
imp
aire
d p
rop
rio
cep
tio
n,
as w
ell
as i
nco
nti
nen
ce,
and
co
gnit
ive
pro
ble
ms
rela
tin
g t
o c
once
ntr
ati
on.
As
nurs
es p
lay a
n i
mp
ort
ant
role
in b
oth
the
acute
and
lo
ng
-ter
m
care
and
sup
po
rt o
f th
ose
who
hav
e su
ffer
ed a
hea
d i
nju
ry,
it i
s
vit
al t
hat
they a
re a
war
e o
f th
e w
ide-r
angin
g n
eed
s w
ith w
hic
h
pat
ients
and
fam
ilie
s m
ay p
rese
nt.
Lei
th K
H.
et a
l. 2
00
4
Exp
lori
ng t
he
serv
ice
nee
ds
an
d
exp
erie
nce
s o
f p
erso
ns
wit
h T
BI
and
thei
r fa
mil
ies:
the
So
uth
Car
oli
na
exp
erie
nce
US
A
To
lea
rn w
hat
par
tici
pan
ts p
erce
ive
thei
r se
rvic
e nee
ds
to b
e an
d w
her
e
they e
xp
erie
nce
ser
vic
e gap
s in
the
exis
tin
g s
yst
em
of
TB
I se
rvic
es.
Fo
ur
focu
s gro
up
s
Qual
itat
ive
con
tent
anal
ysi
s
Qual
itat
ive
con
tent
anal
ysi
s re
vea
led
over
whel
min
g c
onse
nsu
s
regar
din
g t
he
nee
d f
or
(1)
earl
y, c
onti
nuo
us,
co
mp
rehensi
ve
serv
ice
del
iver
y;
(2)
info
rmat
ion/e
duca
tio
n;
(3)
form
al/
info
rmal
advo
cacy;
(4)
emp
ow
erm
ent
of
per
sons
wit
h T
BI/
fam
ilie
s; a
nd
(5)
hu
man c
on
nec
ted
ness
/so
cial
bel
ongin
g.
Appendix 2
INFORMATION SHEET FOR EXPERTS Dear expert
The earlier research on the competence of neurosurgical nursing staff in support of traumatic
brain injury (TBI) patients’ family members is fragmental both in Finland and internationally.
Support of a TBI patient demands a wide range of basic and advanced skills from the nursing
staff. The brain injury affects the patient’s ability to function and think, their emotional life,
behaviour and cognition. According to research, the care of a TBI patient is beneficial and the
recovery is good. The research on competence has been done from the perspective of critical
care and the critically ill patients. However research on the competence of nursing staff’s
support of the patient’s family members in the hospital ward has not been done either in Finland
or internationally.
The purpose of this research is to find out how nursing staff evaluate their basic and advanced
competence in supporting the TBI patient’s family members in the neurosurgical ward
immediately after the injury. In the revision of the questionnaire you have valuable information
about the reality of the items and about which items are part of a nursing staff’s basic
competence and which require advanced competence that can be obtained through work
experience. Your participation is voluntary. Your information will be kept strictly confidential
and reported so that a single respondent’s answers cannot be identified.
The main concepts of this research are the informational support of a TBI patient’s family
members, emotional support and practical support as well as the basic and advanced
competence of nursing staff members.
For the research we will be selecting nursing staffs in neurosurgical wards from all the university
hospitals in Finland (Helsinki, Turku, Tampere, Kuopio and Oulu) who treat TBI patients and
support their family members. I ask you to evaluate the appropriateness of the enclosed
questionnaire’s content. I hope that you have the opportunity to participate in the common
discussion with other experts at a time that will be determined collectively. The discussion will
take approximately one hour.
This is my dissertation research for my Doctoral Degree in Health Care. The research is
supervised by Professor Hannele Turunen, Head of the Department of Nursing Science at the
University of Eastern Finland, Professor Kerttu Tossavainen from the University of Eastern
Finland and Professor of Neurosurgery Juha Jääskeläinen from Kuopio University Hospital.
Thank you for your co-operation,
Kirsi Coco,
MSc, PhD student
E-mail: [email protected]
Adress: Soihtutie 10a 01670 Vantaa, Finland
Tel: +35840-8215057
Appendix 3
INFORMATION SHEET FOR RESPONDENTS Dear respondent
In addition to an extensive basic competence, nursing staff need advanced skills in supporting traumatic
brain injury (TBI) patients in the neurosurgical ward. There have been some studies on basic and
advanced competence in supporting TBI patients’ family members from the nursing staff’s perspective. A
TBI is a trauma that occurs in the brain; the trauma is associated with any kind of loss of consciousness,
memory loss, and changes in body function or a neurological symptom that indicates local brain damage.
In addition to weakened vital functions, the patient always has different sensomotoric, cognitive and
emotional disorders.
The purpose of this research is to find out how the nursing staff evaluates their competence in supporting
the family members of a TBI patient in a neurosurgical ward immediately after the patient’s injury. The
results of this study may be useful in contemplating the need for staff’s supplementary training, and in
addition my research gives valuable information for nursing interventions in supporting a TBI patient’s
family members. Permission for this research has been obtained from your hospital. Your participation is
voluntary. Your information will be kept strictly confidential and reported so that a single
respondent’s/hospital’s answers cannot be identified.
The main concepts of this research are the informational support of a TBI patient’s family members,
emotional support and practical support as well as the basic and advanced competence of nursing staff
members.
For the research we will be selecting nursing staffs in neurosurgical wards from all the university
hospitals, in total six neurosurgical wards, which treat TBI patients and support their family members.
The research sample is a so-called overall sample, because all of the nurses and practical nurses working
in the neurosurgical wards in question will be chosen. I ask you to complete the enclosed questionnaire
and to return it by the end of July 2010 with a stamped envelope addressed to the researcher/contact
person.
This is my dissertation research for my Doctoral Degree in Health Care. The research is supervised by
Professor Hannele Turunen, Head of the Department of Nursing Science at the University of Eastern
Finland, Professor Kerttu Tossavainen from the University of Eastern Finland and Professor of
Neurosurgery Juha Jääskeläinen from Kuopio University Hospital.
Thank you for your co-operation,
Kirsi Coco,
MSc, PhD student
E-mail: [email protected]
Adress: Soihtutie 10a 01670 Vantaa, Finland
Tel: +35840-8215057
Appendix 4
THE BASIC AND ADVANCED COMPETENCE OF NURSING STAFF IN SUPPORTING A TBI
PATIENT’S FAMILY MEMBERS EVALUATION FORM
Answer the following questions by circling the correct choice in your opinion, or by writing the correct answer in
the space provided. I hope that you will comment on the actual questionnaire if something comes to mind.
1. The amount of items in the questionnaire
1 too many
2 reasonable
3 not enough
2. Answering the questionnaire was
1 easy, why?___________________________________________
2 difficult, why?________________________________________
3. Were all the questions comprehensible?
1 yes
2 no
4. If you answered the previous question with 2 (=no), can you explain which of the questions
weren’t comprehensible in your opinion and why?
___________________________________________________________________________
___________________________________________________________________________
5. Was there something lacking in the questionnaire that would’ve had significant value?
1 no
2 yes, what?___________________________________________
_____________________________________________________
6. Were the answer options clear in your opinion?
1 yes
2 no, why?_____________________________________________
7. How much time did it take to answer the questions?_________________________________
8. Do you have any ideas for improvement or anything else to say about the questionnaire?_________
____________________________________________________________________________
(You may continue your answer on the other side of the form.)
9. Evaluate the covering letter. Was there enough information and what would you like to change?
______________________________________________________________________________
THANK YOU FOR YOUR FEEDBACK!
A
p
p
e
n
d
i
x
1 /
11
Ap
pen
dix
5
To b
e co
nti
nu
ed
Qu
esti
on
nai
re
Bac
kgro
un
d v
aria
ble
s
/_/_
/_/
1. G
end
er
1 F
emal
e
2 M
ale
2. A
ge
____
___y
ears
3. E
du
cati
on
1
Pra
ctic
al n
urs
e
2 R
egi
ste
red
nu
rse
(co
llege
of
nu
rsin
g
3 R
egi
ste
red
nu
rse
(un
iver
sity
of
app
lied
sci
ence
)
4. W
ork
exp
erie
nce
as
nu
rsin
g st
aff
mem
ber
1 le
ss t
han
3 y
ears
2 3
-10
year
s
3 1
1-2
0 y
ears
4 2
1 y
ears
or
mo
re
5. W
ork
exp
erie
nce
as
nu
rsin
g st
aff
mem
ber
in c
urr
ent
wo
rk u
nit
1 le
ss t
han
3 y
ears
2 3
-10
year
s
3 1
1-2
0 y
ears
4 2
1 y
ears
or
mo
re
2 /
11
To b
e co
nti
nu
ed
In t
he
follo
win
g s
ecti
on
we
ha
ve li
sted
item
s w
hic
h h
ave
to
do
wit
h t
he
sup
po
rtin
g o
f a
TB
I pa
tien
t’s
fam
ily m
emb
ers.
Cir
cle
the
op
tio
n w
hic
h d
escr
ibes
yo
ur
beh
avi
ou
r. In
ad
dit
ion
, eva
lua
te w
het
her
yo
ur
beh
avi
ou
r is
pa
rt o
f b
asi
c o
r a
dva
nce
d c
om
pet
ence
an
d p
ut
a c
ross
(X)
in t
he
corr
ect
spa
ce.
If t
ha
t b
eha
vio
ur
is n
ot
pa
rt o
f yo
ur
wo
rk, y
ou
ma
y ch
oo
se t
he
op
tio
n ’d
oes
no
t a
ffec
t m
e’.
Info
rmat
ion
al s
up
po
rtin
g o
f a
TB
I pat
ien
t’s
fam
ily
me
mb
ers
I pro
vid
e n
urs
ing
inte
rven
tio
ns
as f
ollo
ws
Co
mp
ete
nce
A
lway
s O
fte
n
Occ
asio
nal
ly
Seld
om
N
ever
D
oes
no
t
affe
ct m
e
Bas
ic
Ad
van
ced
6. I
tel
l a T
BI p
atie
nt’
s fa
mily
mem
ber
s th
at I’
m o
bse
rvin
g
the
pat
ien
t’s
stat
e so
th
at t
he
dec
line
in t
he
pat
ien
t’s
con
dit
ion
can
be
pre
ven
ted
5
4
3
2
1
0
7. I
tel
l a T
BI p
atie
nt’
s fa
mily
mem
ber
s h
ow
th
e le
vel o
f
con
scio
usn
ess
is m
on
ito
red
5
4
3
2
1
0
8. I
tel
l a T
BI p
atie
nt’
s fa
mily
mem
ber
s w
hy
the
pat
ien
t’s
bre
ath
ing
is o
bse
rved
5
4
3
2
1
0
9. I
tel
l a T
BI p
atie
nt’
s fa
mily
mem
ber
s w
hy
the
pat
ien
t’s
blo
od
cir
cula
tio
n is
mo
nit
ore
d
5
4
3
2
1
0
10
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
wh
y I r
egu
larl
y
chec
k th
e p
atie
nt’
s p
up
il re
acti
on
to
ligh
t
5
4
3
2
1
0
11
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
wh
y I m
on
ito
r th
e
pat
ien
t’s
bo
dy
tem
per
atu
re
5
4
3
2
1
0
3 /
11
To b
e co
nti
nu
ed
Info
rmat
ion
al s
up
po
rtin
g o
f a
TB
I pat
ien
t’s
fam
ily
me
mb
ers
I pro
vid
e n
urs
ing
inte
rven
tio
ns
as f
ollo
ws
Co
mp
ete
nce
A
lway
s O
fte
n
Occ
asio
nal
ly
Seld
om
N
ever
D
oes
no
t
affe
ct m
e
Bas
ic
Ad
van
ced
12
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
that
I gi
ve a
fev
er-
red
uci
ng
med
icin
e if
th
e p
atie
nt’
s te
mp
erat
ure
is e
leva
ted
5
4 3
2
1
0
13
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
abo
ut
no
n-m
edic
al
mea
ns
of
low
eri
ng
bo
dy
tem
per
atu
re
5
4 3
2
1
0
14
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
that
I’m
tak
ing
care
of
the
pat
ien
t’s
flu
id t
her
apy
acco
rdin
g to
my
resp
on
sib
iliti
es
5
4 3
2
1
0
15
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
abo
ut
the
sym
pto
ms
cau
sed
by
a ri
se in
intr
acra
nia
l pre
ssu
re
5
4 3
2
1
0
16
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
wh
y n
ause
a is
mo
nit
ore
d
5
4 3
2
1
0
17
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
wh
y th
e tr
eatm
ent
of
anae
mia
is im
po
rtan
t
5
4 3
2
1
0
18
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
that
th
e fa
mily
’s
view
po
int
is t
aken
into
co
nsi
der
atio
n w
hen
pre
par
ing
a ca
re
pla
n
5
4 3
2
1
0
19
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
wh
en r
apid
ch
ange
in t
he
pat
ien
t’s
con
dit
ion
occ
urs
5
4 3
2
1
0
4 /
11
To b
e co
nti
nu
ed
Info
rmat
ion
al s
up
po
rtin
g o
f a
TB
I pat
ien
t’s
fam
ily m
emb
ers
I pro
vid
e n
urs
ing
inte
rven
tio
ns
as f
ollo
ws
Co
mp
ete
nce
A
lway
s O
fte
n
Occ
asio
nal
ly
Seld
om
N
ever
D
oes
no
t
affe
ct m
e
Bas
ic
Ad
van
ced
20
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
th
at t
he
inju
ry m
ay
cau
se d
iffi
cult
ies
in u
nd
erst
and
ing
spee
ch
5 4
3 2
1
0
21
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
that
th
e p
atie
nt
nee
ds
en
ou
gh t
ime
to e
xpre
ss t
hem
selv
es
5 4
3 2
1
0
22
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
that
th
e in
jury
may
cau
se a
ggre
ssio
n
5 4
3 2
1
0
23
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
wh
y b
lood
sug
ar
has
to b
e r
egu
larl
y m
onitore
d
5 4
3 2
1
0
24
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
wh
y t
he
sym
pto
ms
of
hyp
oxi
a h
ave
to b
e re
gula
rly
mo
nit
ore
d
5 4
3 2
1
0
25
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
wh
y t
he o
xyg
en
satu
ration o
f b
loo
d is m
onitore
d r
eg
ula
rly w
ith a
pu
lse
oxim
ete
r
5 4
3 2
1
0
26
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
wh
y a
TBI p
atie
nt’
s
elec
tro
lyte
val
ues
are
mo
nit
ore
d
5 4
3 2
1
0
27
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
wh
y b
loo
d
coag
ula
tio
n v
alu
es a
re m
on
ito
red
5 4
3 2
1
0
28
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
abo
ut
the
sym
pto
ms
rela
ted
to
bra
in o
edem
a
5 4
3 2
1
0
5 /
11
To b
e co
nti
nu
ed
Info
rmat
ion
al s
up
po
rtin
g o
f a
TBI p
atie
nt’
s fa
mily
mem
ber
s I p
rovi
de
nu
rsin
g in
terv
enti
on
s as
fo
llow
s C
om
pet
en
ce
A
lway
s O
fte
n
Occ
asio
nal
ly
Seld
om
N
ever
D
oes
no
t
affe
ct m
e
Bas
ic
Ad
van
ced
29
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
abo
ut
the
sym
pto
ms
rela
ted
to
lim
b p
aral
ysis
5 4
3 2
1
0
30
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
ho
w h
and
sw
ellin
g is
pre
ven
ted
5 4
3 2
1
0
31
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
ho
w p
neu
mo
nia
is
pre
ven
ted
5 4
3 2
1
0
32
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
abo
ut
dif
fere
nt
pai
ns
rela
ted
to
inju
ry
5 4
3 2
1
0
33
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
that
an
ele
vate
d
po
siti
on
dec
reas
es
intr
acra
nia
l pre
ssu
re
5 4
3 2
1
0
34
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
that
I ca
lm a
res
tles
s
pat
ien
t in
ord
er t
o p
reve
nt
the
rise
of
intr
acra
nia
l pre
ssu
re
5 4
3 2
1
0
35
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
wh
y th
e ai
rway
s an
d
oxy
gen
su
pp
ly a
re a
tte
nd
ed t
o d
uri
ng
an e
pile
pti
c se
izu
re
5 4
3 2
1
0
36
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
wh
y d
iaze
pam
is
give
n f
or
an e
pile
pti
c se
izu
re
5 4
3 2
1
0
6 /
11
To b
e co
nti
nu
ed
Info
rmat
ion
al s
up
po
rtin
g o
f a
TB
I pat
ien
t’s
fam
ily m
emb
ers
I pro
vid
e n
urs
ing
inte
rven
tio
ns
as f
ollo
ws
Co
mp
ete
nce
A
lway
s O
fte
n
Occ
asio
nal
ly
Seld
om
N
ever
D
oes
no
t
affe
ct m
e
Bas
ic
Ad
van
ced
37
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
that
I gi
ve
par
acet
amo
l fo
r th
e p
atie
nt’
s h
ead
ach
es
5 4
3 2
1
0
38
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
that
th
e ef
fica
cy o
f
the
trea
tmen
t is
ass
esse
d u
sin
g d
iffe
ren
t in
stru
men
ts (
e.g.
pu
lse
oxi
met
er, s
ph
ygm
om
ano
met
er, p
ain
sca
les)
5 4
3 2
1
0
39
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
ho
w n
urs
ing
has
affe
cte
d t
he
pat
ien
t’s
reco
very
5 4
3 2
1
0
40
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
abo
ut
the
nu
rsin
g
pra
ctic
es o
n t
he
war
d
5 4
3 2
1
0
41
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
wh
at t
he
con
dit
ion
of
the
pat
ien
t is
acc
ord
ing
to t
he
resp
on
sib
iliti
es a
lloca
ted
to
me
5 4
3 2
1
0
42
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
that
th
e
do
cum
enta
tio
n a
bo
ut
the
TBI p
atie
nt’
s tr
eatm
ent
is
pro
du
ced
tak
ing
into
acc
ou
nt
the
TBI p
atie
nt’
s o
pin
ion
5 4
3 2
1
0
43
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers,
tre
atm
ent
is g
ive
n
acco
rdin
g to
th
e re
spo
nsi
bili
ties
allo
cate
d t
o m
e
5 4
3 2
1
0
44
. I a
ssu
re a
TB
I pat
ien
t’s
fam
ily m
emb
ers
that
info
rmat
ion
I giv
e t
hem
do
es n
ot
con
trad
ict
the
info
rmat
ion
giv
en b
y
oth
ers
(e.g
. th
e at
ten
din
g p
hys
icia
n, o
ther
sta
ff)
5 4
3 2
1
0
7 /
11
To b
e co
nti
nu
ed
Emo
tio
nal
su
pp
ort
ing
of
a TB
I pat
ien
t’s
fam
ily m
em
ber
s I p
rovi
de
nu
rsin
g in
terv
enti
on
s as
fo
llow
s C
om
pet
en
ce
A
lway
s O
fte
n
Occ
asio
nal
ly
Seld
om
N
ever
D
oes
no
t
affe
ct m
e
Bas
ic
Ad
van
ced
45
. I s
upport
th
e f
am
ily m
em
bers
of
a T
BI patie
nt
in t
heir g
rief
5 4
3 2
1
0
46
. I d
iscuss f
eelin
gs w
ith t
he f
am
ily m
em
bers
of
a T
BI
patient
5 4
3 2
1
0
47
. I t
ake
into
acc
ou
nt
fam
ily m
emb
ers’
sp
irit
ual
nee
ds
5 4
3 2
1
0
48
. I t
reat
a T
BI p
atie
nt’
s fa
mily
mem
ber
s w
ith
res
pec
t 5
4 3
2
1
0
49
. I g
uid
e a
TBI p
atie
nt’
s fa
mily
mem
ber
s ta
kin
g in
to
acco
un
t th
eir
ind
ivid
ual
ity
5 4
3 2
1
0
50
. I d
iscu
ss f
eelin
gs o
f an
ger
wit
h t
he
fam
ily m
emb
ers
of
a
TBI p
atie
nt
5 4
3 2
1
0
51
. I d
iscu
ss f
eelin
gs o
f gu
ilt w
ith
th
e fa
mily
mem
ber
s o
f a
TBI p
atie
nt
5 4
3 2
1
0
52
. I d
irec
t th
e fa
mily
mem
ber
s o
f a
TBI p
atie
nt
to a
cri
sis
nu
rse
5 4
3 2
1
0
53
. I li
ste
n t
o t
he
con
cern
s o
f th
e fa
mily
mem
ber
s o
f a
TBI
pat
ien
t
5 4
3 2
1
0
54
. I a
sk t
he
fam
ily m
emb
ers
wh
eth
er t
hey
are
co
pin
g 5
4 3
2
1
0
8 /
11
To b
e co
nti
nu
ed
Emo
tio
nal
su
pp
ort
ing
of
a TB
I pat
ien
t’s
fam
ily m
em
ber
s I p
rovi
de
nu
rsin
g in
terv
enti
on
s as
fo
llow
s C
om
pet
en
ce
A
lway
s O
fte
n
Occ
asio
nal
ly
Seld
om
N
ever
D
oes
no
t
affe
ct m
e
Bas
ic
Ad
van
ced
55
. I m
ain
tain
th
e h
op
e o
f th
e fa
mily
mem
ber
s o
f a
TBI
pat
ien
t w
ith
ou
t gi
vin
g fa
lse
ho
pe
5 4
3 2
1
0
56
. I in
tera
ct w
ith
th
e fa
mily
mem
ber
s a
TBI p
atie
nt
wh
en
ther
e is
no
ho
pe
left
5 4
3 2
1
0
57
. I g
uid
e th
e fa
mily
mem
ber
s o
f a
TBI p
atie
nt
in p
rep
arin
g
for
the
futu
re
5 4
3 2
1
0
58
. I r
eass
ure
th
e fa
mily
mem
ber
s o
f a
TBI p
atie
nt
5 4
3 2
1
0
59
. I s
eek
a q
uie
t p
lace
fo
r ta
lkin
g w
ith
fam
ily m
emb
ers
5 4
3 2
1
0
60
. I c
reat
e a
safe
atm
osp
her
e fo
r ta
lkin
g w
ith
th
e fa
mily
mem
ber
s o
f a
TBI p
atie
nt
5 4
3 2
1
0
Pra
ctic
al s
up
po
rtin
g o
f a
TBI p
atie
nt’
s fa
mily
mem
ber
s 5
4
3
2
1
0
61
. I d
iscu
ss w
ith
fam
ily m
emb
ers
a TB
I pat
ien
t’s
sym
pto
ms
that
aff
ect
the
pat
ien
t’s
abili
ty t
o c
op
e w
ith
dai
ly a
ctiv
itie
s
5 4
3 2
1
0
62
. I t
eac
h a
TB
I pat
ien
t’s
fam
ily m
emb
ers
wit
h m
ovi
ng
wh
en t
he
pat
ien
t h
as b
alan
ce p
rob
lem
s
5 4
3 2
1
0
63
. I t
eac
h f
amily
mem
ber
s h
ow
to
tea
ch a
TB
I pat
ien
t to
take
car
e o
f h
im/h
erse
lf (
e.g.
to
eat
ind
epen
den
tly)
5 4
3 2
1
0
9 /
11
To b
e co
nti
nu
ed
Pra
ctic
al s
up
po
rtin
g o
f a
TBI p
atie
nt’
s fa
mily
mem
ber
s I p
rovi
de
nu
rsin
g in
terv
enti
on
s as
fo
llow
s C
om
pet
en
ce
A
lway
s O
fte
n
Occ
asio
nal
ly
Seld
om
N
ever
D
oes
no
t
affe
ct m
e
Bas
ic
Ad
van
ced
64
. I g
uid
e fa
mily
mem
ber
s w
ith
res
pec
t to
eat
ing
wh
en a
TBI p
atie
nt
has
sw
allo
win
g p
rob
lem
s
5 4
3 2
1
0
65
. I t
eac
h a
TB
I pat
ien
t’s
fam
ily m
emb
ers
ho
w t
o a
ssis
t w
ith
eati
ng
wh
en t
he
pat
ien
t su
ffer
s fr
om
pro
ble
ms
car
ryin
g o
ut
such
act
ivit
ies
5 4
3 2
1
0
66
. I t
eac
h a
TB
I pat
ien
t’s
fam
ily m
emb
ers
ho
w t
o a
ssis
t th
e
pat
ien
t in
, e.g
., d
ress
ing
wh
en t
he
pat
ien
t is
su
ffer
ing
fro
m
lack
of
init
iati
ve
5 4
3 2
1
0
67
. I p
rovi
de
guid
ance
fo
r a
TBI p
atie
nt’
s fa
mily
mem
ber
s
wit
h r
esp
ect
to h
elp
ing
the
pat
ien
t w
ith
bat
hin
g w
hen
th
e
TBI p
atie
nt
suff
ers
fro
m p
oo
r co
nce
ntr
atio
n
5 4
3 2
1
0
68
. I t
eac
h a
TB
I pat
ien
t’s
fam
ily m
emb
ers
to u
se a
ids
(e.g
.,
wal
ker,
wh
eelc
hai
r) w
hen
th
e p
atie
nt
is s
uff
erin
g fr
om
, e.g
.,
mem
ory
loss
5 4
3 2
1
0
69
. I t
eac
h a
TB
I pat
ien
t’s
fam
ily m
emb
ers
ho
w t
o s
up
po
rt
the
pat
ien
t’s
ind
epen
den
t fu
nct
ion
ing
5 4
3 2
1
0
70
. I t
eac
h a
TB
I pat
ien
t’s
fam
ily m
emb
ers
that
th
e b
rain
inju
ry m
ay c
ause
sle
ep
dis
turb
ance
s
5 4
3 2
1
0
71
. I t
eac
h a
TB
I pat
ien
t’s
fam
ily m
emb
ers
ho
w t
o a
llevi
ate
the
pat
ien
t’s
sym
pto
ms
such
as
mu
scu
lar
spas
tici
ty
5 4
3 2
1
0
10
/ 1
1
To b
e co
nti
nu
ed
Pra
ctic
al s
up
po
rtin
g o
f a
TBI p
atie
nt’
s fa
mily
mem
ber
s I p
rovi
de
nu
rsin
g in
terv
enti
on
s as
fo
llow
s C
om
pet
en
ce
A
lway
s O
fte
n
Occ
asio
nal
ly
Seld
om
N
ever
D
oes
no
t
affe
ct m
e
Bas
ic
Ad
van
ced
72
. I t
eac
h a
TB
I pat
ien
t’s
fam
ily m
emb
ers
ho
w t
o a
llevi
ate
nau
sea
5 4
3 2
1
0
73
. I a
rran
ge f
or
a TB
I pat
ien
t’s
fam
ily m
emb
ers
to h
ave
the
op
po
rtu
nit
y to
res
t
5 4
3 2
1
0
74
. I o
ffer
a T
BI p
atie
nt’
s fa
mily
mem
ber
s th
e ch
ance
to
hav
e
a b
reak
(e.
g., v
isit
a c
afet
eria
or
go o
ut)
5 4
3 2
1
0
75
. I e
nco
ura
ge a
TB
I pat
ien
t’s
fam
ily m
emb
ers
to t
hin
k
abo
ut
them
selv
es t
oo
5 4
3 2
1
0
76
. I h
elp
a T
BI p
atie
nt’
s fa
mily
mem
ber
s w
ith
sle
epin
g
arra
nge
men
ts
5 4
3 2
1
0
77
. I t
ell
a TB
I pat
ien
t’s
fam
ily m
emb
ers
abo
ut
the
op
po
rtu
nit
ies
to e
at a
t th
e h
osp
ital
5 4
3 2
1
0
78
. I t
eac
h f
amily
mem
ber
s h
ow
to
try
to
pre
ven
t ag
gres
sive
beh
avio
ur
wh
en t
he
TBI c
ause
s th
e p
atie
nt
to h
ave
a sh
ort
tem
per
5 4
3 2
1
0
79
. I t
eac
h f
amily
mem
ber
s to
cal
l an
agg
ress
ive
pat
ien
t b
y
nam
e
5 4
3 2
1
0
80
. I t
eac
h f
amily
mem
ber
s to
an
tici
pat
e a
TBI p
atie
nt’
s
aggr
essi
ve b
ehav
iou
r w
hen
th
e p
atie
nt
suff
ers
fro
m m
oo
d
swin
gs
5 4
3 2
1
0
11
/ 1
1
Pra
ctic
al s
up
po
rtin
g o
f a
TBI p
atie
nt’
s fa
mily
me
mb
ers
I p
rovi
de
nu
rsin
g in
terv
en
tio
ns
as f
ollo
ws
Co
mp
ete
nce
A
lway
s O
ften
O
ccas
ion
ally
Se
ldo
m
Nev
er
Do
es n
ot
affe
ct m
e
Bas
ic
Ad
van
ced
81
. I t
each
a T
BI p
atie
nt’
s fa
mily
mem
ber
s th
at m
ain
tain
ing
a ca
lm
envi
ron
men
t al
levi
ate
s re
stle
ssn
ess
5
4
3
2
1
0
82
. I t
each
a T
BI p
atie
nt’
s fa
mily
mem
ber
s th
at b
ein
g p
rese
nt
may
alle
viat
e re
stle
ssn
ess
5
4
3
2
1
0
83
. I t
each
fam
ily m
em
ber
s th
at I
con
sid
er a
TB
I pat
ien
t’s
un
iqu
e
situ
atio
n w
hen
pla
nn
ing
thei
r ca
re
5
4
3
2
1
0
84
. I in
form
a T
BI p
atie
nt’
s fa
mily
me
mb
ers
abo
ut
soci
al s
erv
ices
(e.g
., p
hys
ioth
erap
ist,
sp
eech
th
erap
ist,
so
cial
wo
rker
)
5
4
3
2
1
0
85
. I c
all a
TB
I pat
ien
t’s
fam
ily m
emb
ers
abo
ut
chan
ges
in t
he
TBI
pat
ien
t’s
con
dit
ion
5
4
3
2
1
0
86
. I in
clu
de
a TB
I pat
ien
t’s
fam
ily m
em
ber
s in
pla
nn
ing
the
pat
ien
t’s
dis
char
ge f
rom
ho
spit
al
5
4
3
2
1
0
87
. I a
rran
ge f
lexi
ble
vis
itin
g h
ou
rs f
or
a TB
I pat
ien
t’s
fam
ily
me
mb
ers,
if n
eed
ed
5
4
3
2
1
0
88
. I c
oo
rdin
ate
a TB
I pat
ien
t’s
tran
sfer
to
an
oth
er c
are
un
it o
r
ho
me
in c
on
sult
atio
n w
ith
fam
ily m
em
ber
s
5
4
3
2
1
0
89
. I a
rran
ge f
or
a TB
I pat
ien
t’s
fam
ily m
em
ber
s to
hav
e a
chan
ce
to s
pea
k w
ith
th
e at
ten
din
g p
hys
icia
n
5
4
3
2
1
0
THA
NK
YO
U!
Publications of the University of Eastern Finland
Dissertations in Health Sciences
isbn 978-952-61-1317-3
Publications of the University of Eastern FinlandDissertations in Health Sciences
The study examined what
supporting traumatic brain injury
(TBI) patients’ family members
entails and how often nursing staff
provide support for TBI patients’
family members. Additionally,
the aim was to find out what kind
of nursing competence (basic/
advanced) is needed to support
TBI patients’ family members on
neurosurgical wards. TBI in one
individual affects the health of the
whole family.
dissertatio
ns | 205 | K
irsi C
oco
| Supporting Traum
atic Brain Injury P
atients’ Fam
ily Mem
bers
Kirsi CocoSupporting Traumatic Brain
Injury Patients’ Family Members
Neurosurgical Nurses’ Evaluations
Kirsi Coco
Supporting Traumatic Brain Injury Patients’ Family MembersNeurosurgical Nurses’ Evaluations