#CarerSpeak & #ClinicSpeak: child carers

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). 

JLS met up with young carers who look after relatives suffering from multiple sclerosis.

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.

17 thoughts on “#CarerSpeak & #ClinicSpeak: child carers”

  1. Under the cosh, I am, but this kid needs help.Adult social services need to send an OT. They need to review and install a stairlift.Tell this that they are mega.Sorry, work calls.

  2. Re. "My mother does not want help and wants us to cope. Mum is unable to walk down the stairs."Does this mean the mother is too proud to ask for help? I would of thought the mother is entitled to PIP daily living component (£55 – £82 a week) or DLA which would cover some very basic care needs. May be I have misunderstood but the mother needs to be advised/educated that she needs to request at least a little help and not to just rely on the child.

  3. I think this post highlights the complexities of interpersonal relationships when it comes to any potentially damaging or challenging situations. As a child protection social worker previously, my experience was that most children just wanted the abuse to stop and still loved the family member. I surmise that the children of PwMS want to assist and support as well as be free of the responsibility. Over time the carer role will have become part of their identity, very possibly in a positive way, and I would assert it's important to respect all these dynamics in engaging adolescents about the world they occupy.It might be beneficial to take a look at how other organisations have approached tackling tricky subjects with children and young people. I volunteer for the NSPCC Schools Service for children age 5-12. Whilst it concerns staying safe from abuse, clearly very different to the role of carer, or support to a parent, what I think is pertinent to so many, many other things is the overriding message: 'Speak out about any worry or problem to a trusted adult' That's what this young person did in contacting you Prof G and I so hope you were able to assist in some way, and I sincerely hope that you and others can progress the education and support to the off-spring of PwMS via the course you are devising, alongside the charities etc who currently support young carers. Best wishes with this!

  4. Another example of the scandal which is MS research. The one thing people which people with MS want from research is not to become more disabled. This is an area where MS research has failed. 60 years of well funded research and still no neuro-protective or re-myelination therapies. When the x'000 researchers turn up the ACTRIMS, ECTRIMS etc. jamborees, perhaps they should spare a thought for kids like this. A friend's sister at 45 is bedridden because of MS. It has destroyed her career, marriage and her two kids have not gone to Uni so the can look after her in her last years. Is it a T cell or B cell disease? They couldn't give a toss. The gap between how far MS academia think we have come and the experience of those with 'advanced' MS couldn't be any wider.

    1. Therefore should we be hiding the reality, as we are giving insights you would never get, some of them you really dont like.

    2. tHen we add another complexity not only do we have one MS families but sometimes there is alos a brother or sister with MS as well as a parent.

    3. "then we add another complexity not only do we have one MS families but sometimes there is also a brother or sister with MS as well as a parent."U.S. tv news producer Richard Cohen has had ms for 45 years..his grandmother and father a dr. had it for 65+ years as well. He also had 2 bouts of colon cancer and written bookson all his health problems.http://richardmcohen.com/You'd think inheritance would be a good clue to a cure or cause ? Neuros call this a golden age of ms drugs..but then you read posts online like the above one and below and wonder what in hell they're talking about…12 drugs that do the same thing..is a cheap one trick magic act."took 24 years but I'm finally bed bound. not bad no life left but I'm 51 so I guess i did alright 🙁

  5. Thank you for highlighting this can I suggest you do a weekly post highlighting issues for MS carers?

    1. Thanks for the suggestion. I will try, but there is not that much research that addresses carers needs. What I will do is label the posts as #CarerSpeak.

  6. A very sad story and demonstrates the complexities of managing MS in the UK. In other countries family, friends and neighbours would be helping. This just shows how modern socialism that is unaffordable has destroyed the extended family and local networks that looked after individuals living in communities.

    1. Re: 'Modern Socialism'Yes, I agree we have allowed socialism to create the nanny state and abrogate our responsibilities towards our families to the state. From an evolutionary perspective this is not how society evolved. We used to live in small tightly-knit communities with a sense of 'family' and community (tribe). In the modern era the community, at least in large cities, is faceless. As austerity bites and is resulting the state withdrawing its support we are going to have to go back to our roots. Could the government put in place policies to rekindle the extended family? How do we create incentives for families reconnect?

  7. I disagree completely. We need to tax the rich properly and use the money to have a properly funded welfare state. Having the same tax rate for people who earn £45 thousand a year and for those who earn £45 million a year is a big joke. We can't go back to small, tightly-knit communities and most people wouldn't want to. We're the sixth richest nation on the planet and we don't have a properly functioning welfare system and our health service is buckling under the strain. We need to share what we have in a fairer way. You can call this "Modern Socialism" or something else but we need it, rather than the ridiculously unbalanced society we have at the moment (trickle down – what a good laugh that was – I think the poorer part of the population gave their opinion on trickle down in the EU referendum).

    1. Socialism is on the retreat. The Labour party is in disarray and have let the neoliberals have taken over the asylum. Those of us on the coalfront in the NHS have to deal with the consequences of austerity Britain every day of the week.

    2. But why is socialism on the retreat? There are lots of stats showing that a more equal society is a happier, healthier society.

  8. The MS Society has grants available for young carers. They have a booklet, free to download from their website called MS in your life – a guide for young carers. It covers:•all about MS•family life•living with MS•becoming a young carer•school and friends•feelings and emotions•looking after yourself•where to go for helpThe MS Society website also has some short videos about young carers. One of the videos Oritsé Williams from the band JLS answers questions from young carers for people with multiple sclerosis (MS). Oritsé's mother has MS, and he was a young carer himself.

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