The Uncharted Journey

Family Members’ Perceptions of Early Childhood Intervention Services and its Relationship to Family Quality of Life

Why did I conduct this study?

• ECI services have traditionally used child functional measures

• Move towards more family- centred practice• Apart from satisfaction- what other outcomes

could be useful?• Improving quality of life is a fundamental

outcome of disability programs• No study had explored the use of Family QoL as

an outcome measure.

Aims

• To provide a preliminary exploration of family members’(Mo, Fa,Sibs, Ext Fam) of children with disabilities- perceptions of ECI and its affects of family quality of life

Research Questions

• Does participation in an ECI program affect the quality of life of families?

• Is measuring changes in family quality of life a useful outcome measure of current family-centred practice?

• What can we learn from ECI families’ experiences that may improve family-centred practice?

Multi-method design

Literature Review

Stage 1Site Visits

ManagersGroup Observation

Parent Coffee Group

Stage 2Quantitative

ComQoL(ECI)

Stage 3Qualitative

FamilyInterviews

Stage 2: QuantitativeFamily Members’ QoL

• Comprehensive Quality of Life Scale (Cummins, 1997) Adult & School-Age Versions were used

• 7 QoL Domains- material wellbeing, health, productivity place in the community, safety, intimacy, emotional wellbeing.

• Objective QoL: Descriptors

• Subjective QoL: Satisfaction (7 point Likert scale)

Com QoL(ECI)-participants

Characteristics Mo Fa Sib Ex Fam

AGE11-15 years 116-25 years 1 126-35 years 5 1 236-45 years 6 546+ years 1Mean Age 35.6 39.1 13.5 32STRUCTURETrad. Nuclear 10 6 2Single 3Sep.Family Unit 2RESIDENCEMetropolitan 9 5 1 2Region/ Rural 4 1 1

Overall Subjective QoL

• Overall Subjective Quality of Life= 5.05 (67.5%SM).

• Within ± 1 SD of Cummins’ (1997) mean (5.38 ± 0.71, 73%SM)

• Outside of gold standard of 70-80%SM (Mellor, Cummins & Loquet, 1999).

Subjective QoL

• 5 of the 7 QoL domains –under 70%• Productivity (60.1%SM) -9.9% SM lower• Emotional Wellbeing (62.2%SM)- 7.8%SM lower• Health (65.9%SM)-5.1%SM lower• Place in the Community (68.1%SM)-1.9%SM

lower• Material Wellbeing (69.6%SM)- 0.4%SM lower

Subjective QoL

• QoL Domains Over 70%SM

• Safety (73.9%SM) +3.9%SM

• Intimacy (73.3%SM) +3.3%SM

Perceived Changes in QOL

• To explore any perceived changes in Fam Qol that family members attributed to ECI.

• What changes have you noticed in your own QoL since commencing ECI?

• Also explored changes in the lives of child with a disability & other family members

• Asked to explain changes

Perceived Changes in Family Members’ QoL attributed to ECI

SignificantNegativeChanges

SomeNegativeChanges

NoChange

SomePositiveChanges

SignificantPositiveChanges

Mixed

Change InChild’s QualityOf Life

2 18 3

Changes In YourOwn Quality OfLife

8 10 2 3

Changes InOther FamilyMembers’Quality Of Life

1 3 10 8 1

Changes in Child’s QoL

• 91% reported positive changes in functioning, physical skills, social skills, confidence, self esteem, happiness

• 2 family members (same family) reported No Change

Changes in your own QoL

• 12 (52%) reported positive changes

• Mother +• Support• Professional guidance• shared experiences

• Mixed (+ &-) 3 mothers• Stress, guilt, cynicism,

variability in mood• feeling helpless

• No change- 8 FM (1mo, 3 fa, 2 sibs, 2 ext fam)

Changes on other family members’ QoL

• 8 reported positive changes

• increased cooperation,• increased confidence• joy• 10- No change

• 5 reported mixed/ some negative/ significant negative changes

• Adverse effects on mothers’ lives/emotions

• Changes in siblings behav • Ext family: difficulty

accepting child’s illness, or decreased support

Other comments re ECI/QoL

• Enormous amounts of time-not enough hours in the day

• Life revolves around the child with a disability• Lots of driving • ECI hours- don’t allow for fathers’ involvement

(second hand information)• Confusing/frustrating- not well informed• Difficulty accessing service• Less ECI time

Family Interviews

• 3 families (6 family members)

• Sally (27 yrs), son Luke (18mo)- undiagnosed, sister (Mary-24yrs) and brother in law (Wayne-25 yrs),

• Karen (43yrs) and Tom (42yrs) ,Mark (30mo) with CP, Sam (8yr)

• Margaret (41yrs). Husband (John), Adele (48mo) Brain Damage, Lewis (9yrs).

Interviews: The Uncharted Journey

• Finding Out• Thinking something is wrong

• Seeking Advice

• Being informed and responding to the diagnosis

The Uncharted Journey...

• Discovering A Way Into the Disability System

• Initial Support

• Service Information

• Social & Emotional

• Accessing services and funding

The Uncharted Journey...

• Developing a Service Network

• Wanting what is best for the child

• Wanting what is best for the family

The Uncharted Journey...

• Effects on Family Quality of life• Work & childcare

• Family Finances

• Health

• Relationships

Contributing factors

• Mothers- overwhelmed by care-giving demands

• Additional financial costs• Frustrations and endless

wait to access ECI services

• Absence of truly family-centred services

• Discrimination

• Lack of validation and respect shown to family members

• Conflicted/paradoxical relationships b’n parents and CWAD

• Reduced positive affect in their lives (joy/play/contentment optimismetc)

Services need to provide

• Systemic processes to ensure families are well information

• Enhance confidence and empower families

• Improve family choice & control • Increase family’s Sense of Coherence

(comprehensible, manageable and meaningful) Antonovsky 1993

Raises Questions

• Why are families not provided with the necessary information or some-one to guide their journey?

• Why are the systems currently in place so frustrating to navigate?

• Why do health professionals act in ways that are unhelpful and erode family members’ confidence and mental health?

• What is prohibiting services from adopting a more family-centred approach?

Closing Comment

• “It must be remembered that we do not own the lives and the stories we tell. They are lent to use, given provisionally, if they are given at all. They remain always and irrevocably the lives and stories of those who have told them to us” Denzin, as cited in Rice and Ezzy, 1999.