Parents of adults with multiple sclerosis: what is their role and how does in change over time?

As a physiotherapist with relatively little experience in the wheelchair field, I chose to reflect on the above presentation at PMG Conference 2019 because I have both a personal and professional interest in the holistic management of multiple sclerosis (MS). It particularly appealed to me because my father-in-law has recently been diagnosed with MS, and I often wonder how my extended family will cope emotionally and practically with his changing condition. As a health professional I naturally have concerns about his mobility and environment, especially because he and his wife had chosen to retire to rural Cornwall shortly before the diagnosis.

The presentation provided feedback on a qualitative study looking at the emotional impact the diagnosis of MS has on parents. It suggested that there is limited research looking at the impact of health conditions like MS on family members. As health professionals know, the support network around someone with a progressive neurological condition can be vital.

A qualitative research design, Grounded Theory, was used to analyse the interviews carried out with parents of those diagnosed with MS. Themes and ideas were identified, then the data were coded to look for repetition until saturated.  The Hospital Anxiety and Depression Scale was the chosen outcome measure; it suggested that one of the participants may be suffering from depression, and five may be suffering with anxiety.

The study revealed trends in the emotions of mothers and fathers who had adult children with MS. The parents reported missing the relationship they’d had with them pre-diagnosis, and having feelings of guilt about being healthy when they are not. Some felt loss for the retirement they had planned, and some felt conflict, given they themselves may require care in their older age. They felt they were unable to show emotion in front of their adult child for fear this would burden them further. Some parents were trying to maintain their adult child’s independence, but found the balance of how much to be involved in their care difficult to judge.

The study involved interviewing parents who were keen to tell their stories. The sample size was small at only nine participants, and all the participants had been, or were still, married. All the parents interviewed were British. All this makes generalising the results difficult, and the sample type may not be reflective of the population.

In summary, the study advised that health professionals spend time to check with the care providers, offering them mental health support if indicated.

I am proud to say that my employer (Guy’s and St Thomas’ Wheelchair Service) offers a counselling service for both wheelchair users and those who support them, but I am unsure how well used it is by care givers.

As my father-in-law’s health deteriorates, I will be happy to offer support as a family member with a professional background, although it’s difficult to treat family members without getting emotionally involved. I must juggle my role as an inherently risk-averse physiotherapist with being a daughter-in-law, and let them enjoy their chosen lifestyle for as long as they can.

Above photograph is of Dr Rachel Tams presenting at PMG Conference 2019.  Dr Tams supervised the author of the study, Dr Camilla Holden, at the Department of Clinical Neuropsychology, Oxford Centre for Enablement.

Members of PMG can view Dr Tams's presentation by clicking here.