Austerity Britain and the army of child carers. What should we do? #ClinicSpeak #MSBlog #CarerSpeak
#CarerSpeak is the new label or #tag for posts of direct relevance to MS carers
"Dear Professor Giovannoni, Can you help? I am 14 and I care for my Mum. Her multiple sclerosis is getting worse and I now have to spend most of my time looking after her. I have to prepare her tablets for her each day and remind her to take them. I have started to send her text reminders from school otherwise she forgets to take her lunchtime tablets. When I get home from school I often have to clean-up the mess she has made. My father left us when I was 9 and my aunts and uncles live near Liverpool. My mother does not want help and wants us to cope. Mum is unable to walk down the stairs and has taken to hopping down the stairs on her bum. The other day she slipped and slid down the stairs on her back. She got a carpet burn and now has a row of sores over her spine. I worry about leaving her at home when I go to school."
The scenario above is just one of many I have encountered over the years as a MS expert. There is literally an army of child carers out there looking after disabled parents with chronic diseases. As austerity bites, and social care budgets get squeezed, the number of children in this position will increase. The study below highlights the issue; compared with children of ‘healthy’ parents, children of a parent with MS report all of the issues raised in the case above; they have lower life satisfaction and are less likely to be happy (positive affect). As predicted, better adjustment in children of a parent with MS was related to higher levels of social support, lower stress, greater reliance on approach coping strategies (problem solving, seeking support and acceptance) and less reliance on avoidant coping (wishful thinking and denial).
We realise there is a massive unmet need out there to help adolescents of pwMS and are in the discussion phase of designing a course specifically targeting teenagers of pwMS. If you have been engaged with a course like this before we would be interested to hear from you; what was good and bad? Any suggestions are welcome. If you have MS and teenage children would you enrol them on a course to learn more about MS and more importantly would they attend?
Pakenham & Bursnall. 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. Clinical Rehabilitation 2006 Vol 20, Issue 8, pp. 709 - 723.
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.
Labels: #CarerSpeak, #ClinicSpeak, adolescence, child carers, children, teenager