REVIEW

Interventions for children coping with parental multiplesclerosis: A systematic reviewRoseMarie Horner, RN-CPN, BSN, MSN (Family Practice RN, FNP Candidate)

University of Cincinnati, Cincinnati, Ohio

KeywordsParental multiple sclerosis; child coping

strategies; adjustment; interventions.

CorrespondenceRoseMarie Horner, RN-CPN, BSN, MSN, Toccoa

Family Medicine, 843 Falls Road, Toccoa,

GA 30577.

Fax: 706-886-0099;

E-mail: hornerri@mail.uc.edu,

hornfam@ymail.com

Received: July 2012;

accepted: October 2012

doi: 10.1111/j.1745-7599.2012.00795.x

Abstract

Purpose: A systematic review was conducted to explore ways to assist childrenof parents with multiple sclerosis (MS) in developing positive coping strategies.Data sources: Multiple databases including Academic Search Complex,CINAHL plus with full text, Health Source: Nursing Academic Edition, Medlinewith full text, and Psychology and Behavioral Sciences Collection. The reviewwas not limited by year of publication.Conclusions: Evidence demonstrates children of parents with MS who in-crease their coping skills, social support, and knowledge of the disease processexhibit decreased emotional distress and increased overall life satisfaction.Implications for practice: Future research needs to explore the effects ofintervention programs designed specifically to target different age levels andpromote coping strategies, social support, and knowledge of MS. Healthcareproviders need to address the family’s needs, including children, when a parentis diagnosed with MS.

Introduction

Multiple sclerosis (MS) is an unpredictable neurologicdisease affecting the lives of 2.5 million people world-wide and is two to three times as prevalent in womenas in men. Symptoms vary widely because of the ef-fect on the central nervous system and include cogni-tive impairment, changes in sensation, muscle weaknessand spasms, fatigue, coordination and balance difficulties,visual impairments, bowel and bladder difficulties, andemotional changes (National Multiple Sclerosis Society,2012). MS symptoms typically begin to emerge aroundage 30, when people are most likely to be starting or rais-ing a family. Therefore, this disease process has a greatimpact on not only the person suffering from this debil-itating disease, but the entire family (Pakenham & Cox,2012). There is a growing number of support groups, webpages, medical facilities, and journals devoted to provid-ing individuals suffering from MS with the care and sup-port they need to promote a high quality of life. However,this disease affects the family as a whole and there are fewresources available to provide support for children copingwith parental MS.

Research indicates children are negatively affectedwhen a parent suffers from MS. These children are atgreater risk for emotional distress, physical ailments, andoverall lower life satisfaction (Pakenham & Cox, 2012).Children of a parent with MS experience depression, anx-iety, and anger because of the parent’s disease processand the increased stress placed on them and the family(Yahav, Vosburgh, & Miller, 2007). Many of these chil-dren also feel as if they are required to take on more re-sponsibility than other children their age, causing themto feel isolated. This isolation is compounded by the be-lief that they lack social support because their friends can-not understand what they are going through (Pakenham,Chiu, Burnsnall, Cannon, & Okochi, 2006). Additionally,many children with a parent who has MS do not fully un-derstand the disease process or disease progression. Thiscauses distress for children because they do not under-stand what to expect as the disease progresses or whetherMS is something they can contract themselves (Cross &Rintell, 1999).

In addition to the negative effects of parental MSon children, research also demonstrates positive effects.In some instances, the increased responsibilities these

309Journal of the American Association of Nurse Practitioners 25 (2013) 309–313 C©2012 The AuthorC©2012 American Association of Nurse Practitioners

Interventions for children coping with parental MS R. Horner

Table 1 SIGN key to evidence statements and grades of recommendations

LEVELS OF EVIDENCE

1++ High-quality meta-analyses, systematic reviews of RCTs, or RCTs with a very low risk of bias

1+ Well-conducted meta-analyses, systematic reviews, or RCTs with a low risk of bias

1− Meta-analyses, systematic reviews, or RCTs with a high risk of bias

2++ High-quality systematic reviews of case control or cohort or studies. High-quality case control or cohort studies with a very low risk of

confounding or bias and a high probability that the relationship is causal

2+ Well-conducted case control or cohort studies with a low risk of confounding or bias and a moderate probability that the relationship is

causal

2− Case control or cohort studies with a high risk of confounding or bias and a significant risk that the relationship is not causal

3 Nonanalytic studies, for example, case reports, case series

4 Expert opinion

children face lead to more adaptive coping skills suchas problem solving, acceptance, and seeking social sup-port. This leads to less distress, better health, and greaterlife satisfaction (Bogoslan, Moss-Morris, & Hadwin, 2010;Pakenham & Bursnall, 2006). Also, children who weremore knowledgeable about the disease experienced lessdistress and felt knowledge improved their ability to sup-port their parent (Coles, Pakenham, & Leech, 2007).

The purpose of this review was to discover the effects ofparental MS on children and to identify factors promot-ing positive coping in children of parents with MS. Nursepractitioners (NPs) are in a prime position to develop in-terventions designed to assist these children cope morepositively with their parent’s diagnosis.

Method

Search strategy

A systematic review was conducted. Database searcheswere carried out in Academic Search Complex, CINAHLplus with full text, Health Source: Nursing Academic Edi-tion, Medline with full text, and Psychology and Behav-ioral Sciences Collection to identify studies on childrenwith a parent with MS. The time frame of the searchwas not limited by publication year and was conductedin April 2012. The initial key terms were “interventions,children, parent, and multiple sclerosis,” which resultedin 3610 articles. The key terms were then narrowedto “multiple sclerosis and coping,” yielding 654 articles.These were further reduced to “multiple sclerosis, child,and coping” yielding 58 results and “multiple sclerosis,child, and adjustment” yielding 42 results. In additionto the database search, the reference lists for all studiesfor which copies were obtained were examined for fur-ther articles that might not have been included in thedatabases, yielding another eight articles. Based on the ti-tle and abstract information, 33 research articles were re-

Table 2 SIGN grading of articles

Grade % of articles reviewed

1+ 5%

2+ 45%

2++ 45%

3 5%

viewed for inclusion criteria, Inclusion criteria consistedof studies evaluating the effects of a parental MS on chil-dren, the ways children cope with a parent’s disability,or intervention programs designed for children of parentswith MS. Based on these criteria, 15 articles were elimi-nated; 18 articles were included in the review.

Study quality

The 18 articles were graded according to the ScottishIntercollegiate Guidelines Network (SIGN; 2012) gradingsystem, see Table 1. These studies were given a rank-ing based on level of evidence and risk of bias. Table 2displays the percentage of articles receiving each grade(Scottish Intercollegiate Guidelines Network, 2012).

Results

In order to compare and report the findings, the 18studies were grouped by theme. Three themes are de-scribed: the effects of caregiving on children with a parentwith MS, the effects of parental MS disability on children,and children’s knowledge of the disease process and howthis affects coping.

The effects of a child’s changed role when a parenthas MS

Four articles focused on the role of the child as a care-giver when the parent has MS, and how this role affects

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the child. These articles indicate that when compared tochildren of healthy parents, children of a parent with MSare at increased risk for lower life satisfaction, emotionaldistress, and physical ailments. Research illustrates thisis in part because of increased family responsibilities. Ifchildren adjust to the increased responsibilities using theadaptive coping strategies of problem solving, acceptance,and seeking social support they will typically experienceless distress, better health, and greater overall life satis-faction. Yet, if the children feel they do not have anychoice as to their role in the family responsibilities, orthey utilize the maladaptive coping strategies of wishfulthinking or denial, then they experience greater distress,more somatization, and a decrease in life satisfaction. Un-fortunately, as these studies depict, when compared tochildren of healthy parents, children of parents with MStend to rely less on adaptive coping strategies, leading toincreased risk for emotional distress, physical ailments,and lower life satisfaction (Ireland & Pakenham, 2010;Pakenham & Bursnall, 2006; Pakenham & Cox, 2012;Pakenham et al., 2006).

The effects of parental MS disability on children

The effects of parental MS on children were de-scribed in 10 of the research articles. These articles de-pict how living with a parent with MS can have botha positive and negative outcome on children. Positiveexperiences are increased by using the coping strate-gies of acceptance, seeking social support, and prob-lem solving. Additionally, expanding the child’s knowl-edge of MS, allowing more time with friends to avoidisolation, and having the well parent adjust positivelyto the situation also greatly influence positive experi-ences (Bogosian, Moss-Morris, Bishop, & Hadwin, 2011;Bogoslan et al., 2010; Ireland, & Pakenham, 2010; Mor-ley, Selai, Schrag, Jahanshahi, & Thompson, 2011). Un-fortunately many of these children experience their par-ent’s disease process negatively, experiencing emotionalsymptoms, peer problems, conduct problems, anxiety,depression, and anger. These negative experiences are in-creased by a child’s lack of social support, perceived iso-lation, and perceived increased maturity level over otherchildren their age. Additionally, the greater the degreeof physical and psychosocial disability the more nega-tive the effects are on the child (Bogosian et al., 2011;DeJudicibus, & McCabe, 2004; Ehrensperger et al., 2008;Mazur, 2006; Steck et al., 2007; Yahav et al., 2005, 2007).The use of the coping strategies of denial and wishfulthinking also add to the negative experiences of thesechildren.

Children’s knowledge of the disease process andthe effects on coping

The three articles in this group focused on gaining anunderstanding of how much knowledge of the diseaseprocess children of parents with MS have. Of these three,only one research article studied actual interventions.The findings in this group of articles demonstrates howmany children of parents with MS do not fully under-stand the disease process or know what to expect as thedisease progresses. This lack of knowledge leads to anincrease in distress, as some children believe their behav-ior can affect the course of their parent’s disease or thatMS is contagious (Cross & Rintell, 1999; Stavroula et al.,2007). The intervention program by Coles et al. (2007)provided education and support in a weeklong campenvironment designed for children of parents with MS.Those who attended the program reported a significantdecrease in the amount of their distress. Additionally,some children experienced an increase in social supportgained from the camp. However, social isolation didincrease from preintervention to postintervention andthen returned to preintervention levels. This is believedto be sensitization from the camp, making the childrenaware of their isolation outside of camp. Additionally,the results suggested there was an overall increase inMS knowledge, which many children believed decreasedtheir distress and also improved their ability to supporttheir parent (Coles et al., 2007).

Limitations

There are some limitations to this systematic review.This systematic review only included articles written inthe English language and available as full text from thedatabase searches. Additionally, the studies used differ-ent recruitment procedures. For example, some studiesrecruited from MS Societies and others recruited fromdifferent neurologist offices, while some conducted anal-yses on data from previous studies. Also, the assessmentprocedures varied from interviews to questionnaires anddid not always include information directly from the chil-dren. Information for younger children was often gath-ered from the parents, which could change the results ofthe findings. Additionally, the study encompassed all agesof children. In order to truly understand which copingskills are effective, further studies need to be conductedat different developmental stages.

Discussion

This review demonstrates parental MS can nega-tively impact children. These children experience great

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emotional distress while trying to understand the dis-ease process and what it means for both their parent andthemselves. Gaining knowledge about how the diseaseprogresses and what to expect during the different stagescan help to alleviate some of the emotional turmoil as-sociated with the unknown (Coles et al., 2007; Cross &Rintell, 1999; Diareme et al., 2007).

Furthermore, there is a significant amount of researchdemonstrating that children of a parent with MS do nothave adequate coping skills to help them adjust to the in-creased burden placed on the family. These children ex-perience anger, anxiety, and depression while using thenegative coping strategies of denial and wishful thinking(Pakenham & Bursnall, 2006). Many children feel iso-lated from their peers because of the added responsibil-ities they must take on in order to assist the debilitatedparent. In some instances they feel as if they are pressuredinto performing extra chores or have extra family respon-sibilities that keep them from spending time with theirfriends. Also, some children feel guilty if they leave theparent to spend time with friends, feeling as if it is theirresponsibility to take care of their parent. Then again,some of the isolation is brought on by feelings of beingashamed of their parent or being afraid of being treateddifferently because of their parent. Therefore, they wouldrather not have friends over or choose to stay home in-stead of going places with their disabled parent. For olderchildren and adolescents, the responsibility of doing ex-tra chores or assisting the parent with daily activities suchas dressing, eating, or walking many times leads to feel-ings of guilt or resentment as the children take on a moremature role than is typical for their age (Ireland & Paken-ham, 2010; Pakenham et al., 2006).

Even though parental MS seems to have a negative im-pact on many children, there has been some light shedon this subject. There is evidence that children who learnto use positive coping strategies such as problem solving,seeking social support, and acceptance do experience lessemotional and physical distress and have overall greaterlife satisfaction (Pakenham & Bursnall, 2006). Addition-ally, there is promising evidence that intervention pro-grams that provide social support and education on theprocess and progression of MS are helpful in decreasingthe distress experienced by children coping with parentalMS (Cole et al., 2007; Diareme et al., 2007).

Future implications

Unfortunately, at this time there are few interventionor support programs geared specifically for children ofparents with MS. Community programs and MS sup-port groups need to include these children and help edu-cate and provide resources to help them cope with their

parent’s condition. Intervention programs for childrenneed to become a more prominent part of caring for MSpatients and their families. Future research ought to in-clude implementing and determining the effectiveness ofan intervention program designed to help facilitate thepositive coping strategies of acceptance, seeking socialsupport, and problem solving. Additionally, the programshould focus on providing these children with a socialnetwork of peers with similar experiences as well as edu-cation about the causes, physiologic process, and diseasecourse of MS. Furthermore, research needs to be con-ducted to determine if tailoring intervention programsto the developmental needs of specific age groups andfollowing children as they change their developmentalneeds would be more beneficial to decreasing both emo-tional and physical distress.

Acknowledgments

The author would like to acknowledge and thank Dr.Jason Gregg for his guidance and mentorship throughoutthe writing of this manuscript. The author would also liketo thank Laura Donaldson for her support and assistancewith editing during this project.

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