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Table 1 Summary of studies examining exposure to parental MS and psychosocial adjustment in children and adolescents

From: Children and adolescents adjustment to parental multiple sclerosis: a systematic review

Author/Year Country Study design Sample (age range of children) A. Exposure to parental MS B. Parental MS duration Outcomes measured Evaluator Main findings *Quality[11]
Arnaud 1959 [12] United States Quantitative/Cross-sectional 60 children with an MS parent and 221 with a “healthy” parent(s) (7–16 years) A. Mean = 7.2 years (SD: 2.5) B. Range: 3–17 years aPsychological characteristics: Third Party: Author Children with a parent with MS scored higher in: Body concerns Dysphoric feelings, Hostility, Constraint in interpersonal relations, Dependency needs Medium
(1) General anxiety
(2) Body concern
(3) Dysphoria
(4) Hostility
(5) Constraint in interpersonal relations
(6) Dependency longings
(7) False maturity
Blackford 1999 [13] Canada Qualitative/Cross-sectional 22 children with an MS parent. No comparison group. Did not specify Children’s descriptions of life with a parent who has MS Third Party: Author Children with an MS parent described higher personal competence, hopefulness, and spirituality. Negative factors that children encountered were attributable more to society than to their parent’s condition. Low
Bogosian 2011 [14] UK Qualitative/Cross-sectional 15 children with an MS parent (13-18 years). No comparison group. Did not specify Interviews were conduced asking Third Party: Trained Interviewer Adolescents described both positive and negative experiences related to having a parent with MS. Benefits to having a parent with MS included reports of feeling more empathetic to others and more grown-up. Negative impacts included family tension, less time to spend with friends, and worries about the future. High
What is it like for you to have a parent with MS
How does your mum’s/dad’s MS affect your?
a. Social life
b. Family life
Brandt 1998 [15] Unites States Quantitative/Cross-sectional 174 children with an MS parent (7-17 years). Population ‘norms’ as comparison group. Did not specify bChildren’s Mental Health Parent without MS 25% of children in this study (45 of the 174) were classified as being “at risk” for a mental health problem compared with the rate of the prevalence rate in the general child population of 12% to 20%. Low
Crist 1993 [16] United States Quantitative/Cross-sectional 31 girls with mothers with MS and 34 girls with “healthy” mother(s) (8-12 years) A. Minimum = 2 years Mother-daughter interactions during a work task and a play task assessed as: receptiveness, directiveness, and dissuasiveness Third party: Author Similar proportions of receptive, directive, and dissuasive behaviors were used by mothers with MS and their daughters compared with those used by control group mothers and their daughters. Medium
B. Range: 2 - 28 years
De Judicibus 2004 [5] Australia Quantitative/Cross-sectional 48 children with an MS parent (4–16 years). No comparison group. B. Mean = 5.6 years (ranged: 1- 19 years) cChildren’s emotional and behavioural well-being Parent with MS Children with an MS parent demonstrated more difficulties in how they related to others, the distress they experienced and how they managed their lives. However, they did not reveal higher levels of clinical symptoms requiring treatment. Low
Diareme 2006 [7] Greece Quantitative/ Cross-sectional 56 children with an MS parent and 64 with a “healthy” parent(s) (4–17 years) B. Mean = 10.3 years (SD: 9.5) d, eChildren’s emotional and behavioural problems Child Children whose parents, especially mothers, had MS presented greater emotional and behavioural problems than comparison children. Children’s problems were positively associated with maternal depression and family dysfunction. Family dysfunction predicted children’s overall and externalizing problems, while the severity of impairment of the MS mother predicted children’s internalizing problems. Medium
Kikuchi 1987 [17] Canada Qualitative/Cross-sectional 32 children with an MS parent (6 - 17 years). No comparison group. Did not specify (although at the time of MS diagnosis subjects ranged from newborns to 15 years; mean = 6.5 years) Children reported quality of life Third Party: Trained Interviewer For most part children reported a good quality of life. Although, children expressed limited knowledge of MS and feelings of fear, anger and sadness. Medium
Olga 1974 [18] United States Quantitative/ Cross-sectional 124 children with an MS parent and 60 with a “healthy” parent(s) (7–11 years) A. Minimum = 2 years fBody image Child Body image scores did not differ between groups Low
Body image distortion tended to be greater in girls with MS mothers than girls with MS fathers or boys with MS mother  
Pakenham 2006 [19] Australia Quantitative/ Cross-sectional 48 children with an MS parent and 145 with a “healthy” parent(s) (10–25 years) B. Mean = 9 years (SD: 7; range: 4 months to 29 years) Children’s positive (benefit finding, life satisfaction and positive affect) and negative (distress and health status) adjustment Child Children with a parent with MS had poorer adjustment, greater family caregiving responsibilities and lower levels of life satisfaction and positive affect Low
Pakenham 2012 [20] Australia Quantitative/ Longitudinal Time 1: 130 children with an MS parent (10-20 years) Time 2 (After 12 months): 91 children with an MS parent (10-20 years). No comparison group. At time 1:B. Mean = 8.2 years (SD: 5.8; range: 4 months to 25 years) gChildren’s negative (behavioural emotional difficulties, somatisation) and positive (life satisfaction, positive affect, prosocial behaviour) adjustment - Child - Parent with MS - Parent without MS At time 1 higher total caregiving was associated with lower life satisfaction and higher somatization and total difficulties. Higher total difficulties were also associated with greater social-emotional care. At time 2, higher caregiving responsibility was associated with lower life satisfaction and higher total caregiving was associated with increased prosocial behaviour. Further, time 1 instrumental and social-emotional care domains were associated with poorer time 2 adjustment. Low
Paliokosta 2009 [21] Greece Quantitative/Cross-sectional 56 children with an MS parent (4-17 years). No comparison group. B. Mean = 10.3 years (range = 2 months to 21 years) bChildren’s mental health and behaviour Third Party: Trained Interviewer - Parent with MS - Parent without MS - Child Children and adolescents who had “partial information” about parental MS presented with higher scores in social difficulties and internalizing behaviours as well as higher total problems on the child behaviour checklist. They also presented with higher score on social problems. Low
Interviews were also conducted with the child and the parent about the amount of information regarding parental MS given to child    
Peters 1985 [22] Canada Quantitative/Cross-sectional 33 children with a MS parent and 33 with a “healthy” parent(s) (12–18 years) B. Mean = 9.2 years (range: 1.6 - 17.7 years) hFamily cohesion, expressiveness, conflict, independence, achievement orientation, intellectual-cultural orientation, active-recreational, moral-religious emphasis, organizations and control in a family Child Children of MS parents showed significant differences in the perception of their family environment v.s children of ‘healthy’ parents. Lack of ‘feeling of togetherness’ was reported Medium
Steck 2005 [23] Switzerland Quantitative/Cross-sectional 41 children with an MS parent (6 – 18 years). No comparison group. A. Mean = 3.5 years (for children < 12); mean = 8.2 years (for children > 12) Children’s indication for psychotherapy Third party: Trained Interviewer Half of the children were estimated to benefit from individual psychotherapy aimed at enhancing ability to cope with the parental MS. Low
Steck 2007 [8] Germany, Greece, Switzerland Quantitative/Cross-sectional 192 children with an MS parent (Mean = 9.8 years; SD: 4.8). No comparison group. B. Mean = 6.5 years for MS fathers; Mean = 7.7 years for MS mothers bChildren’s mental health and behaviour - Parent with MS Parent without MS Child MS parents, especially mothers, as well as depressed mothers, or depressed “healthy” parents evaluated their children’s mental health problems with a higher prevalence within the internalizing spectrum. If two parents presented a depressive state, the prevalence of relevant psychological internalizing symptoms was twice or three times as high as the age norms. Low
Turpin 2008 [10] Australia Qualitative/Cross-sectional 8 children with an MS parent (7–14 years). No comparison group. Did not specify Children’s day-to-day lives, their perceptions of their parent’s condition and their thoughts about the future Third Party: Occupational therapist and a psychologist Children described taking on additional roles and responsibilities that restricted their participation in developmentally appropriate occupations. Additional responsibilities can enhance children’s skills and provide pride and stress. High
Yahav 2005 [24] Israel Quantitative/Cross-sectional 56 children with an MS parent and 156 with a “healthy” parent(s) (10–18 years) A. >6 months A sense of personal concern and responsibility towards parents Third Party: Trained Interviewer Children of parents with MS felt more responsibility and obligation than children of healthy parents. They also exhibited higher degree of responsibility, more fear and anxiety related to MS, a greater sense of burden and a greater degree of anger. Medium
Degree of responsibility and active protection of parents
Fear and anxiety about parents’ future
Burden of tasks and errands at home
Anger
Yahav 2007 [25] Israel Quantitative/ Cross-sectional 56 children with an MS parent and 156 with a “healthy” parent(s) (10–18 years) A. >6 months eChildren’s emotional health and problem areas: delinquent behavior, aggression, attention problems, thought disorders, social acceptance problems, anxiety and depression, somatic complaints, and withdrawal behavior. Third Party: Trained Interviewer Children with an MS parent displayed higher levels of depression and anxiety than children from the control group. Furthermore, children in the study group reported a greater degree of separation anxiety, compared with the control group. Medium
  1. *Graphic Appraisal Tool for Epidemiology (GATE).
  2. Instruments used to measure the stated outcomes:
  3. aRorschach test [26].
  4. bChild Behaviour Checklist [27].
  5. cStrengths and Difficulty Questionnaire [28].
  6. dAchenbach’s Child Behaviour Checklist and Youth Self Report [29].
  7. eYouth Self Report, [30] and Separation Individuation Test of Adolescence [31].
  8. eDraw-A-Person [32], Semantic Differential [33] and The Body-Cathexis Scale [34].
  9. gYouth Activities of Caregiving Scale [35].
  10. hFamily environment scale [36].
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