The nature of caregiving in children of a parent with multiple sclerosis from multiple sources and the associations between caregiving activities and youth adjustment overtime

This study explored youth caregiving for a parent with multiple sclerosis (MS) from multiple perspectives, and examined associations between caregiving and child negative (behavioural emotional difficulties, somatisation) and positive (life satisfaction, positive affect, prosocial behaviour) adjustment outcomes overtime. A total of 88 families participated; 85 parents with MS, 55 partners and 130 children completed questionnaires at Time 1. Child caregiving was assessed by the Youth Activities of Caregiving Scale (YACS). Child and parent questionnaire data were collected at Time 1 and child data were collected 12 months later (Time 2). Factor analysis of the child and parent YACS data replicated the four factors (instrumental, social-emotional, personal-intimate, domestic-household care), all of which were psychometrically sound. The YACS factors were related to parental illness and caregiving context variables that reflected increased caregiving demands. The Time 1 instrumental and social-emotional care domains were associated with poorer Time 2 adjustment, whereas personal-intimate was related to better adjustment and domestic-household care was unrelated to adjustment. Children and their parents exhibited highest agreement on personal-intimate, instrumental and total caregiving, and least on domestic-household and social-emotional care. Findings delineate the key dimensions of young caregiving in MS and the differential links between caregiving activities and youth adjustment

Relations between social support, appraisal and coping and both positive and negative outcomes for children of a parent with multiple sclerosis and comparisons with children of healthy parents

Objective: To examine adjustment in children of a parent with multiple sclerosis within a stress and coping framework and compare them with those who have 'healthy' parents. Subjects: A total of 193 participants between 10 and 25 years completed questionnaires; 48 youngsters who had a parent with multiple sclerosis and 145 youngsters who reported that they did not have a parent with an illness or disability. Method: A questionnaire survey methodology was used. Variable sets included caregiving context (e.g. additional parental illness, family responsibilities, parental functional impairment, choice in helping), social support (network size, satisfaction), stress appraisal, coping (problem solving, seeking support, acceptance, wishful thinking, denial), and positive (life satisfaction, positive affect, benefits) and negative (distress, health) adjustment outcomes. Results: Caregiving context variables significantly correlated with poorer adjustment in children of a parent with multiple sclerosis included additional parental illness, higher family responsibilities, parental functional impairment and unpredictability of the parent's multiple sclerosis, and less choice in helping. As predicted, better adjustment in children of a parent with multiple sclerosis was related to higher levels of social support, lower stress appraisals, greater reliance on approach coping strategies (problem solving, seeking support and acceptance) and less reliance on avoidant coping (wishful thinking and denial). Compared with children of 'healthy' parents, children of a parent with multiple sclerosis reported greater family responsibilities, less reliance on problem solving and seeking social support coping, higher somatization and lower life satisfaction and positive affect. Conclusions: Findings delineate the key impacts of young caregiving and support a stress and coping model of adjustment in children of a parent with multiple sclerosis

Psychosocial adjustment in children and adolescents with a parent with multiple sclerosis: a systematic review

Objective: This systematic review explored the potential impact of parental multiple sclerosis on their offspring. It considered adjustment to parental multiple sclerosis at different developmental stages and the factors associated with good versus poor adjustment. Data sources: MEDLINE, EMBASE, PsycINFO, CINAHL and Web of Science were searched for studies on children with a parent with multiple sclerosis. Inclusion and exclusion criteria were formulated. Hand-searching journals and reference lists, contacting authors and multiple sclerosis societies for additional unpublished papers complemented the searches. Review methods: Twenty studies that satisfied the inclusion criteria were included. The research articles were ranked according to a quality assessment checklist and were categorized as good, medium or poor quality. Results: The review found good evidence to suggest that parental multiple sclerosis has a negative impact on children’s social and family relationships and their psychological well-being. The review also identified potential factors associated with poor adjustment. These factors included parental negative emotions, increased illness severity, family dysfunction, children’s lack of knowledge about the illness and lack of social support. Adolescent children also seemed to be more at risk for psychosocial problems than school-age children. Conclusions: There is good evidence that parental multiple sclerosis has a negative psychosocial impact on children, especially on adolescents. <br/

The Economic Impact of Progressive Neurological Illness on Quality of Life in Australia

Economic pressure, Financial costs, Progressive neurological illness, Quality of life,