Information, involvement, self-care and support—The needs of caregivers of people with stroke: A grounded theory approach

Abstract

Background Globally, stroke is a leading cause of death and disability, with most care undertaken by caregivers who are generally family and friends without prior experience of care. The lack of experience or unpreparedness results in feelings of uncertainty, burnout, anxiety, burden, etc. Hence, it is necessary to identify the needs of caregivers to better support them in their caregiving journey and improve the quality of care delivered. Methods The study employed a grounded theory methodology that utilizes information gathered from literature reviews and social media to represent the needs and create a storyline visually. The storyline is further refined and evaluated using an online survey of 72 participants recruited through online stroke caregiving communities. Results The study identified four core categories of needs: (i) Information: sufficient information delivered in layman’s terms based on the individual situation of the caregiver and survivor through oral and hands-on demonstrations, (ii) Involvement: inclusion in the decision-making processes at different stages of recovery through face-to-face communication at the hospital, (iii) Self-care: ability to engage in work and leisure activities, (iv) Support: receive support in the form of resources, services and finances from different other stakeholders. Conclusions There is a need to create a caregiver-centered approach in stroke recovery to ensure limited obstruction to care and reduced uncertainty in stroke recovery. Moreover, through the inclusion of caregivers in stroke recovery, it may be possible to reduce the burden of care to the caregiver and ensure the satisfaction of the healthcare system throughout stroke recovery.

Detecting user experience issues from mHealth apps that support stroke caregiver needs: an analysis of user reviews

“…Ability to address the needs of a stroke caregiver, i.e., information, involvement, self-care and support ( 24 )…”

“…This study, therefore, aims toward analyzing and evaluating the user reviews of apps that support stroke caregivers healthcare needs ( 24 ) based on seven user experience dimensions ( 25 ). The results of this analysis can potentially help mobile app developer’s researchers to understand the factors that affect long-term adherence and usage in stroke caregiving technology.…”

Informal caregivers – A missing voice in clinical ethics

“…24 This conceptual failure translates all too easily into pragmatic difficulties: the absence of clearly defined roles also means a lack of any institutions and mechanisms for caregivers' inclusion in healthcare conversations and decisions. Consequently, many studies report that informal caregivers had unmet needs for information, 25 do not participate in discussions on patient's needs and values, 26 and sometimes feel treated as 'interfering relatives'. 27 This lack of narrative inclusion not only affects carers' morale and well-being, but also has negative consequences for the quality of long-term care.…”

Influence of health professionals on partnership relationships in long-term neurological rehabilitation in Germany - study protocol of a qualitative retrospective study

“…On the other hand, they need help themselves. Within the framework of the existing family system, relatives thus have to face new challenges [9,12]. In this context, the rehabilitation process after acquired neurological damage is associated with fears, worries and adaptations for many patients and their caregivers [13].…”

“…Life orientations, goals, ideas, and expectations about one's own life and future development represent a relevant aspect of rehabilitative cooperation and success. Relatives of those who are directly affected not only experience trauma but also deal with the illness and its lasting personal consequences for themselves [9]. Individual processes take place within partnership dyads and domestic cohabitation.…”