COMENTARIOS FINALES VULNERABILIDADES AMBIENTALES COMO FACTORES CONDICIONANTES

Informal support and care were received mainly from relatives or from volunteers who took the person with a stroke for a walk or other activity. Support also came through face-to-face contact and information from peers, both fellow partners and fellow stroke survivors. A participant appreciated being able to ‘Listen to each other [in the same situation

post-stroke] and have a day-trip with the peer support group‘ (B1). However, some younger

participants indicated that the peer support group did not match their age and that they had other issues. Several participants were active on social media. Facebook played a major role when participants wanted to share emotions with other peers. Support from other spouses on Facebook made them feeling less lonely. As one participant said, ‘I have

there [on Facebook] a big network of other caregivers, that’s great‘ B5). Although the input of

professionals was perceived as important, advice from most participants was to appoint a fellow stroke survivor and a fellow spouse of a stroke survivor to share experiences and give support in self-management at home.

Discussion

The dominant finding in this study is that relationships changed between partners after a stroke. Spouses experienced feelings of loss and burden, especially caused by the new role as caregiver in addition to the role of partner. The changes caused helplessness, loneliness, sadness and guilt, and many participants needed time for themselves to self-manage, which is also found in other studies among caregivers of stroke survivors.4, 6, 19, 29-31 _{Several participants missed professional support for their partner post-stroke as} well as for themselves. Many participants felt that complete self-management by stroke survivors was not possible, and they preferred to speak about co-management.

Several reflections can be made when we compare the results of this study with our other focus groups with stroke survivors and professionals regarding self-management post-stroke.3, 16 _{Compared with our the reflections of the stroke survivors in a focus group} study we conducted earlier,3 _{the spouses’ reflections in our current focus group study} on self-management differ slightly. Stroke survivors were focused on themselves and considered the idea of self-management as having to do with their own self-manage- ment. When the stroke survivors spoke about their spouses, it was mainly about how their spouses could help them in self-managing. The spouses, on the other hand, reflected first and foremost as caregivers when they talked about self-management. Only at a second stage did they reflect on their own self-management. This may indicate the manner in which spouses deal with a situation by effacing themselves.32 _{Professionals in stroke} rehabilitation should acknowledge that spouses may wish to support partners’ self-man-

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The Perspectives of Spouses of Stroke Survivors on Self-Management

4

agement after a stroke, but spouses should also be informed and encouraged to take care of their own health and wellbeing.

Although they used other terminology, many participants reported the same important elements in stroke survivors’ self-management as was mentioned by professionals,16 such as the need for sufficient cognitive skills, self-knowledge and an ability to learn. The same can be said about participants’ understanding of their own attitude in supporting stroke survivors’ self-management. They developed their expertise and understanding gradually; the way they reasoned about coaching, supporting, letting go or structuring the situation for their partners post-stroke was comparable with the way professionals reason.16 _{The participants developed their expertise without much} professional support. They had just learned by doing. These findings strengthen the findings of our other two focus group studies in which stroke survivors and professionals reported that more support in self-management post-stroke was needed.3, 16 _Moreover, professionals expressed the need for self-management programs for both the stroke survivor and the spouse,16 _{which the participants of our current study mentioned as well.} These interventions should start as soon as possible in the rehabilitation phase but especially post-discharge at home. A recent longitudinal study about follow-up care after a stroke with home visits showed that 76% of caregivers reported that their daily life improved after home visits, and 68% of the caregivers reported that if the care had been provided at a health centre, it would have been inaccessible for them.33 _{When providing} programs for stroke survivors and their spouses, professionals in stroke rehabilitation should also consider adopting some principles of Community Occupational Therapy in Dementia.34 _{This program focuses on both patients with dementia and their informal} caregivers, with the aim to sustain patients’ and caregivers’ autonomy and social participation.

The confusion and struggle of participants in managing the demands of their old and new roles as spouse, caregiver, therapist and family member reflect the findings of other studies.4, 5, 32 _{Proper support in the competing roles is desirable, preferably as soon as} possible,35 _{and can be addressed by professionals in role-management interventions.} Research shows that spouses of stroke survivors need time for themselves to take care of their own health and wellbeing and socialize with friends and family.4, 5, 32, 35 _{On the other} hand, spouses also want to be involved in their partners’ rehabilitation. Moreover, due to changes in society and healthcare, spouses are increasingly expected to provide support to their partners post-stroke.4 _{For example, in a Dutch stroke rehabilitation program,}36 caregivers are coached to provide complementary exercise therapy to their partner with a stroke, in addition to usual therapy. The clinical implications of our findings are that professionals should explore whether stroke survivors’ spouses can be loaded with extra roles as caregiver and ‘therapist’ in addition to being the spouse. Role and emotional management interventions can call attention to the roller coaster spouses are on and support them in the different roles. This might include discussing with spouses the

meaning and responsibilities of each role and the need to maintain their own social roles in the interest of their own health and wellbeing.37 _{Moreover, to support the families of} stroke survivors, a family-centred approach can be adopted by professionals to consider the different roles of all family members across the rehabilitation continuum.5, 35

Finally, the use of peers and social networks such as Facebook are important to integrate in existing stroke self-management programs. This supports a study of the value of peer groups during in-patient rehabilitation38 _{and a case study in which peer support} was perceived as encouraging, motivating, validating and decreasing feelings of loneliness of stroke survivors and their care partners.39 _{Moreover, peer support also promotes} community reintegration of peer volunteers themselves.