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Caregivers navigating rehabilitative care for people with aphasia after stroke: a multi-lens perspective.

ABSTRACT: BACKGROUND:Up to 40% of stroke survivors acquire aphasia and require long-term caregiver assistance after discharge from the hospital. Caregivers assume multiple roles as they help people with aphasia to access outpatient rehabilitative care in an increasingly person-centred model of care. Examining caregiver roles and how different stakeholders in the rehabilitative journey perceive these roles may be the first step in providing more tailored support to caregivers and improving outcomes for both caregivers and people with aphasia. AIMS:To characterize the roles caregivers assume while navigating outpatient rehabilitative care for people with aphasia after stroke from the perspective of different stakeholders in the rehabilitative process. METHODS & PROCEDURES:Thirty-six people participated in the study, including seven caregivers, 22 stroke survivors with aphasia and seven healthcare providers. Focus groups were conducted, and an iterative thematic analysis was used to identify themes. OUTCOMES & RESULTS:Results indicate that caregivers are perceived differently by varying stakeholders, and that caregivers adopt diverse roles as advocates, therapists, motivators and guardians. They assume these roles in order to fill gaps in services or otherwise to facilitate the recovery journey for the person with aphasia. CONCLUSIONS & IMPLICATIONS:This study provides a valuable glimpse into how varying stakeholders view the role of the caregiver during rehabilitation for people with aphasia after stroke. Providing caregivers with the training and support they need throughout the recovery journey by treating them as partners in the process may mitigate the perception of caregivers as feeling compelled to adopt multiple roles.

SUBMITTER: Shafer JS

PROVIDER: S-EPMC6609487 | biostudies-literature | 2019 Jul

REPOSITORIES: biostudies-literature

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Caregivers navigating rehabilitative care for people with aphasia after stroke: a multi-lens perspective.

Shafer Jennifer S JS Shafer Paul R PR Haley Katarina L KL

International journal of language & communication disorders 20190318 4

<h4>Background</h4>Up to 40% of stroke survivors acquire aphasia and require long-term caregiver assistance after discharge from the hospital. Caregivers assume multiple roles as they help people with aphasia to access outpatient rehabilitative care in an increasingly person-centred model of care. Examining caregiver roles and how different stakeholders in the rehabilitative journey perceive these roles may be the first step in providing more tailored support to caregivers and improving outcomes ...[more]

PMID: 30884057

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Project description:BACKGROUND:People-centred health care (PCC) services are identified by the WHO as important building blocks towards universal health coverage. In 2016 the WHO formulated a comprehensive framework on integrated PCC services based on an international expert consultation. Yet, expert opinions may fail to recognize the needs of all health system stakeholders. Therefore, a consultation method that includes the health workforce and laypersons, can be instrumental to elaborate this framework more in-depth. This research sought to identify participants' perspectives on policy options and interventions to achieve people-centred health care services from a multi stakeholder perspective. METHODS:Study participants, both laypersons and health professionals, were recruited in Belgium. A total of 53 participants engaged in one of the seven concept mapping workshops. In this workshop the concept mapping methodology developed by Trochim, a highly structured qualitative group method for brainstorming and idea sharing, was used to generate and structure participants´ perspectives on what is needed to achieve PCC services. The method was validated using the WHO framework. RESULTS:The seven workshops together resulted in 452 different statements that were structured in a framework forming 35 clusters and four overarching domains. The four domains with their most prominent clusters were: (1) governance & policy with intersectoral health policies and affordable health for all; (2) health workforce with excellent communication skills, appreciation of health literacy challenges and respectful attitude based on cultural self-awareness; (3) integrated health services with a greater emphasis on prevention, health promotion and the availability of health education and (4) patient, person and community empowerment and participation with support for informal care, promotion of a healthy lifestyle and contextualised health education. Additionally, this study generated ideas that fitted into every single approach described in the WHO framework. DISCUSSION AND CONCLUSION:This study shows that in order to achieve PCC a participative approach involving all stakeholders at all levels is needed. The concept mapping process is one of these approaches that brings together diverse stakeholders and foments their egalitarian and respectful participation. The framework that resulted from this study can inform future debate regarding planning, implementation and monitoring of PCC.

Project description:Informal caregivers of people with neurocognitive disorders (NCDs) may play a decisive role in guaranteeing partners' participation in community-based physical exercise interventions. However, little is still known about their perspective on being involved in such programs that are specifically designed for their partners. This study aimed to explore the views of caregivers of people with NCDs about taking part in a multicomponent physical exercise intervention with their partners and to explore the perceived impact of this program on those caregivers who enrolled in it. An exploratory qualitative study was conducted with 20 caregivers (67.5 ± 13.94 years; seven female) from the "Body & Brain" project. Ten took part in the physical exercise sessions (active-participating caregivers), and the others did not (social-participating caregivers). Data retrieved from semi-structured interviews were analyzed following a thematic analysis approach. Regardless of their participation level, all caregivers reported their inclusion to be important in enhancing their partners' initiation and engagement in the sessions; also, they all identified personal gains. Active-participating caregivers reported exercise-related benefits on general health, enjoyment, and social connectedness. Social-participating caregivers considered this intervention an opportunity for respite and appreciated being involved only occasionally (i.e., occasional gatherings or telephone contacts). The findings support the inclusion of caregivers in physical exercise interventions designed for partners with NCDs, considering their decisive role in the partners' adherence and engagement and due to the perceived gains. Future community-based interventions designed for people with NCDs should consider giving caregivers the opportunity to choose whether they want or not to be actively involved in the exercise sessions. Further studies with larger samples are needed to verify these results, comparing caregivers' point of view at baseline and post-intervention.

Project description:Background:Depression is very common among stroke survivors with estimated prevalence rates of approximately 33% among stroke survivors, but treatment options are limited. Mindfulness-Based Stress Reduction (MBSR) is an effective treatment for depression generally, but benefits in stroke patients are unclear. The aim of this study was to determine the feasibility of delivering MBSR to stroke survivors and their caregivers in the community. We conducted a study to gain views of MBSR as a potential treatment option among stroke survivors and their caregivers in the community. Methods:Participants were recruited from an urban community in Scotland (UK) using newspaper adverts, social media and support groups run by health charities. A 2-h MBSR taster session was delivered by two experienced mindfulness instructors, followed by focus group sessions with all participants on their user experience and suggestions for MBSR modifications for stroke survivors. The focus group sessions were audio recorded and transcribed verbatim. Transcript data were analysed thematically using the framework approach. Results:The study sample consisted of 28 participants (16 females); there were 21 stroke survivors (11 females) and 7 caregivers (5 females). The median age for participants was 60 years.Most participants described the MBSR taster session as a positive experience. The main challenge reported was trying to maintain focus and concentration throughout the MBSR session. Some participants expressed reservations about the duration of standard mindfulness course sessions, suggesting a preference for shorter sessions. The potential for achieving better control over negative thoughts and emotions was viewed as a potential facilitator for future MBSR participation. Participants suggested having an orientation session prior to starting an 8-week course as a means of developing familiarity with the MBSR instructor and other participants. Conclusion:It was feasible to recruit 21 stroke survivors and 7 caregivers for MBSR taster sessions in the community. A shorter MBSR session and an orientation session prior to the full course are suggestions for potential MBSR modifications for stroke survivors, which needs further research and evaluation.

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Caregivers navigating rehabilitative care for people with aphasia after stroke: a multi-lens perspective.

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Caregivers navigating rehabilitative care for people with aphasia after stroke: a multi-lens perspective.

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