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 |