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Stroke survivors' experiences of team support along their recovery continuum.

ABSTRACT: BACKGROUND:A coordinated stroke rehabilitation care team is considered optimal for supporting stroke survivors from diagnosis to recovery. Despite this recognition, many stroke survivors cannot access essential rehabilitation services. Furthermore, there is a lack of understanding of stroke patients' and their caregivers' rehabilitation needs and wishes. We sought to gain insight into healthcare and social structures from the perspective of patients and caregivers that can better support long-term stroke recovery. METHODS:We conducted individual interviews with 24 participants comprised of stroke survivors, spousal caregivers, stroke support group coordinators, and speech pathologist. Participants were recruited through three stroke survivor support groups. An empowerment lens was integrated into data analysis and data interpretation. RESULTS:Two dominant themes captured participants' experiences through stroke survivors' trajectory of care. 1) Experiences of managing stroke. This theme identified stroke survivors and spousal caregivers' experiences with stroke recovery, rehabilitation, and fulfilling unmet needs. 2) Resources of support. This theme described the social and financial support structures drawn upon to assist with stroke rehabilitation. CONCLUSIONS:The study highlighted a lack of teamwork between stroke survivors, spousal caregivers, and health professionals. This fragmented care was compounded by inequities in rehabilitation programs and health services resulting in what appeared to be a disempowering rehabilitation process. Although stroke recovery groups were a significant source of support for stroke survivors and spousal caregivers, participants perceived they were overlooked, by stroke recovery healthcare providers, as a site for stroke recovery healthcare services. An empowerment approach to stroke rehabilitation involves collaboration between stroke survivors, caregivers, healthcare providers, health services, and existing community stroke support structures. Framing stroke based care through an empowerment lens may serve to address stroke rehabilitation inadequacies and inequities.

SUBMITTER: Hartford W

PROVIDER: S-EPMC6805495 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

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Stroke survivors' experiences of team support along their recovery continuum.

Hartford W W Lear S S Nimmon L L

BMC health services research 20191021 1

<h4>Background</h4>A coordinated stroke rehabilitation care team is considered optimal for supporting stroke survivors from diagnosis to recovery. Despite this recognition, many stroke survivors cannot access essential rehabilitation services. Furthermore, there is a lack of understanding of stroke patients' and their caregivers' rehabilitation needs and wishes. We sought to gain insight into healthcare and social structures from the perspective of patients and caregivers that can better support ...[more]

PMID: 31638959

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Project description:AimTo explore the experiences pertaining to long-term care services from the perspectives of dyads of stroke survivors and their family caregivers in indigenous and non-indigenous communities.BackgroundStroke occurrence is a life-changing event associated with quality of life for stroke survivors and their families, especially those who provide primary support. Indigenous people are more likely to experience a stroke at a younger age and have a higher likelihood of hospitalisation and death due to health disparities. Few studies have investigated family dyads or indigenous populations to understand their experiences of coping with changed body-self and to contextualise their reintegration into communities post-stroke.MethodsEthnographic fieldwork over nine months in 2018-2019 with indigenous, urban-based, and non-indigenous populations, resulting in 48 observations and 24 interviews with 12 dyads in three geo-administrative communities.FindingsThe post-stroke recovery trajectory is illuminated, delineating the dyads' life transitions from biographical disruption to biographical continuation. The trajectory is shaped by seven states involving four mindsets and three status passages. The four mindsets are sense of loss and worry, sense of interdependence, sense of independence, and wellbeing state. The status passages identified in this study are acceptance, alteration, and identification. A community-based and family-centred long-term care system, aligning with medical healthcare and community resources, underpinned each dyad's biographical continuation by: (1) providing rehabilitation that afforded time and space for recovery adaptation; (2) acknowledging the individuality of family caregivers and helping to alleviate their multitasking; and (3) reintegrating stroke survivors into their communities. Key to determining the quality of recovery for the indigenous participants was their reintegration into their native community and regaining of identity. Therefore, integrating post-stroke care into various care contexts and incorporating indigenous-specific needs into policymaking can support dyads in adapting to their communities.

Project description:BackgroundSelf-care is essential for stroke survivors to recover from neurological disorders caused by stroke and to prevent recurrences. Self-care behaviors are activities that individuals undertake to prevent recurrence and complications, and have a positive effect on the quality of life of patients. Telehealth is an emerging technology through which self-care intervention can be provided from a distance. Review-based research is needed to determine the value and development of telehealth-based self-care interventions for stroke survivors.ObjectiveBased on the middle range theory of self-care of chronic illness, to provide an effective guide when developing telehealth self-care interventions for stroke survivors by comprehensively understanding telehealth interventions to support self-care of stroke survivors.MethodsAn integrative review, this study was performed in accordance with Whittemore and Knafl's stages of an integrative review (problem identification, literature search, data evaluation, data analysis, and presentation of the results). The key search terms included combinations of concepts related to stroke survivors and self-care, and telehealth. The research year of searched publications was not limited, and five electronic databases (PubMed, Ovid-MEDLINE, Ovid-EMBASE, CINAHL and Cochrane Library) were searched.ResultsFour attributes were identified that represented telehealth's functions that appeared to be associated with a self-care intervention for stroke survivors. These included introducing the concept of interaction, monitoring, education, and store and forward. These self-care interventions were found to influence the behaviors of stroke survivors' self-care maintenance (physical activity and treatment adherence), self-care monitoring (blood pressure, healthy behaviors, health diet, psychological well-being, glucose control, and depression), and self-care management (sense of control, healthcare resource utilization, social integration, and support).ConclusionsThe results of this study can provide a guide for developing effective telehealth self-care intervention by identifying the attributes of telehealth self-care intervention for stroke survivors.

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Stroke survivors' experiences of team support along their recovery continuum.

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Stroke survivors' experiences of team support along their recovery continuum.

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