Living with myotonic dystrophy; what can be learned from couples? a qualitative study

Abstract

BackgroundMyotonic dystrophy type 1 (MD1) is one of the most prevalent neuromuscular diseases, yet very little is known about how MD1 affects the lives of couples and how they themselves manage individually and together. To better match health care to their problems, concerns and needs, it is important to understand their perspective of living with this hereditary, systemic disease.MethodsA qualitative study was carried out with a purposive sample of five middle-aged couples, including three men and two women with MD1 and their partners. Fifteen in-depth interviews with persons with MD1, with their partners and with both of them as a couple took place in the homes of the couples in two cities and three villages in the Netherlands in 2009.ResultsPeople with MD1 associate this progressive, neuromuscular condition with decreasing abilities, describing physical, cognitive and psychosocial barriers to everyday activities and social participation. Partners highlighted the increasing care giving burden, giving directions and using reminders to compensate for the lack of initiative and avoidant behaviour due to MD1. Couples portrayed the dilemmas and frustrations of renegotiating roles and responsibilities; stressing the importance of achieving a balance between individual and shared activities. All participants experienced a lack of understanding from relatives, friends, and society, including health care, leading to withdrawal and isolation. Health care was perceived as fragmentary, with specialists focusing on specific aspects of the disease rather than seeking to understand the implications of the systemic disorder on daily life.ConclusionsLearning from these couples has resulted in recommendations that challenge the tendency to treat MD1 as a condition with primarily physical impairments. It is vital to listen to couples, to elicit the impact of MD1, as a multisystem disorder that influences every aspect of their life together. Couple management, supporting the self-management skills of both partners is proposed as a way of reducing the mismatch between health services and health needs.

Uncovering health and social care needs among myotonic dystrophy patients

“…This situation agrees with relatives' descriptions of a challenging care situation, 9,33,34 and the unmet needs contrast with guideline recommendations. The degree of unmet needs was greater among those with more severe muscular impairment, and hence, a more We found unmet needs for case management and family carer support, physiotherapy, occupational therapy, and personal enablers.…”

How is self-management perceived by community living people after a stroke? A focus group study

“…In respect to the role of relatives, participants spoke about ''co-management'', which was about managing together with their relatives. This echoes the findings of a qualitative study among people with myotonic dystrophy, where co-management was called ''couple-management'' [45]. The participants' need to have other people support them in their self-management was also reflected by Morelands' study showing that, in a cohort of 209 stroke clients, the family facilitated an average of 54% of the management of daily life again [46].…”

Shared recovery: Couples' experiences after treatment for colorectal cancer

“…The sample size was comparable to other studies of a similar nature (e.g. Akeson et al, 2007;Cup et al, 2011), recognising that qualitative methodology can obtain rich information from a small sample or even single case study (Smith, 2008). The fifth couple were purposefully selected to compare experiences for a younger couple.…”