Exploring the role of a facilitator in supporting family carers when embedding the iSupport for Dementia programme in care services: A qualitative study.

AIMS: To explore stakeholders' perceptions of a facilitator's role in supporting carers when embedding iSupport for Dementia psychoeducation program, in care services. METHODS: A qualitative descriptive study design was applied. Data were collected from workshops and interviews with carers of people living with dementia (PLWD)and with health and social care professionals from two tertiary hospitals and two community aged care organisations across three Australian states between October 2021 and March 2022. A thematic analysis was used to analyse data. The COREQ guideline was followed to report our findings. RESULTS: A total of 30 family carers and 45 health and social care professionals participated in the study. Three main themes and seven subthemes were identified from the data. We described the main themes as (1) the facilitator's role at the time of dementia diagnosis, (2) the facilitator's role throughout the everyday dementia care journey and (3) the facilitator's role during transition moments. CONCLUSIONS: Caring for family members with dementia is demanding and stressful for carers. Embedding a facilitator-enabled iSupport for Dementia program in hospital and community aged care settings has the potential to mitigate sources of stress associated with care recipient factors, carer factors and care service factors, and improve the health and well-being of carers and those for whom they care. RELEVANCE TO CLINICAL PRACTICE: Our findings will inform the establishment of iSupport facilitators appointed by dementia care providers in hospital and community care settings and help determine their roles and responsibilities in delivering the iSupport program. Our findings relate to nurse-led and coordinated dementia care in hospital and community aged care settings. PATIENT OR PUBLIC CONTRIBUTION: This study was co-designed with stakeholders from two aged care organisations and two tertiary hospitals. The study participants were staff employed by these organisations and carers of PLWD who were service users.

Creating 'Partnership in iSupport program' to optimise family carers' impact on dementia care: a randomised controlled trial protocol.

BACKGROUND: The majority of people with dementia are cared for by their family members. However, family carers are often unprepared for their caring roles, receiving less education and support compared with professional carers. The consequences are their reduced mental and physical health and wellbeing, and that of care recipients. This study protocol introduces the 'Partnership in iSupport program' that includes five interventional components: managing transitions, managing dementia progression, psychoeducation, carer support group and feedback on services. This health services research is built on family carer and dementia care service provider partnerships. The aims of the study are to evaluate the effectiveness, cost-effectiveness and family carers' experiences in the program. METHODS: A multicentre randomised controlled trial will be conducted with family carers of people living with dementia from two tertiary hospitals and two community aged care providers across three Australian states. The estimated sample size is 185 family carers. They will be randomly assigned to either the intervention group or the usual care group. Outcomes are measurable improvements in quality of life for carers and people with dementia, caregiving self-efficacy, social support, dementia related symptoms, and health service use for carers and their care recipients. Data will be collected at three time points: baseline, 6 months and 12 months post-initiation of the intervention. DISCUSSION: This is the first large randomised controlled trial of a complex intervention on health and social care services with carers of people living with dementia in real-world practice across hospital and community aged care settings in three Australian states to ascertain the effectiveness, cost-effectiveness and carers' experiences of the innovative program. We expect that this study will address gaps in supporting dementia carers in health and social care systems while generating new knowledge of the mechanisms of change in the systems. Findings will strengthen proactive health management for both people living with dementia and their carers by embedding, scaling up and sustaining the 'Partnership in iSupport program' in the health and social care systems. TRIAL REGISTRATION: The Australian New Zealand Clinical Trials Registry (ANZCTR). ACTRN12622000199718 . Registered February 4th, 2022.

Exploring the shared experiences of people with stroke and caregivers in preparedness to manage post-discharge care: A hermeneutic study.

AIMS AND OBJECTIVES: To explore the shared experiences of people with stroke and caregivers in preparedness to manage post-discharge care. BACKGROUND: People with stroke and caregivers show dyadic effects in dealing with post-discharge care challenges. However, few studies have explored their shared experiences and unique challenges for each dyadic member in preparedness to manage post-discharge care. This study addresses this research gap. DESIGN: An interpretive approach underpinned by Gadamer's philosophical hermeneutics. METHODS: Semi-structured interviews were conducted with people with stroke and caregivers in 5 days before hospital discharge (n = 26) or 2 weeks after discharge (n = 4) between July and December 2019. The study followed a five-step data analysis method aligning with Gadamerian hermeneutics. The study reporting followed the COREQ checklist. RESULTS: Three themes and six subthemes were identified. First, both people with stroke and caregivers experienced psychological stress, although the sources differed. Second, stroke dyads demonstrated resilience built on positive thoughts, confidence, and support from family and health professionals. Third, stroke dyads exhibited different levels of certainty about post-discharge care. They desired to be equal partners in co-developing and co-implementing discharge plans. CONCLUSIONS: Similarities and differences in perceived preparedness to manage post-discharge care existed between stroke dyadic members. A co-design approach to developing and implementing discharge plans would enhance planned post-discharge care. IMPACT: Hospital-to-home transition is a challenging time for people with stroke and their caregivers. Understanding the shared experiences of stroke dyads in preparedness for post-discharge care enables nurses to take proactive actions to enhance managing post-discharge care. Early identification of those at risk of developing psychological stress will enable nurses to co-develop stress-coping strategies. These will have a positive influence on the dyad when facing setbacks due to stroke-related complications.

Enablers and barriers in hospital-to-home transitional care for stroke survivors and caregivers: A systematic review.

AIMS AND OBJECTIVES: To synthesise qualitative research evidence on the experience of stroke survivors and informal caregivers in hospital-to-home transitional care. BACKGROUND: Due to a shortened hospital stay, stroke survivors/caregivers must take over complex care on discharge from hospital to home. Gaps in the literature warrant a meta-synthesis of qualitative studies on perceived enablers and barriers during this crucial period. DESIGN: A systematic review and meta-synthesis. METHODS: A review was guided by Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) checklist where six databases were searched from April to June 2020 including CINAHL Plus, MEDLINE, PsycINFO, Scopus, Web of Science and ProQuest and ProQuest Dissertations and Theses. There was no date limit to the search. Selected studies were critically appraised. A thematic synthesis approach was applied. RESULTS: The synthesis of 29 studies identified three major findings. First, partnerships with stroke survivors/caregivers empower discharge preparation, foster competence to navigate health and social care systems and activate self-management capabilities. Second, gaps in discharge planning and the lack of timely postdischarge support contribute to unmet care needs for stroke survivors/caregivers and affect their ability to cope with poststroke changes. Third, stroke survivors/caregivers expect integrated transitional care that promotes shared decision-making and enables long-term self-management at home. CONCLUSIONS: Hospital-to-home transition is a challenging period in the trajectory of poststroke rehabilitation and recovery. Further research is required to deepen understandings of all stakeholders' views and address unmet needs during transitional care. RELEVANCE TO CLINICAL PRACTICE: Protocols and clinical guidelines relating to discharge planning and transitional care need to be reviewed to ensure partnership approach with survivors/caregivers in the design and delivery of individualised transitional care. Stroke nurses are in a unique position to lead timely support for survivors/caregivers and to bridge service gaps in hospital-to-home transitional care.

An integrative review: Challenges and opportunities for stroke survivors and caregivers in hospital to home transition care.

AIM: To identify challenges and opportunities for stroke survivors and caregivers in hospital to home transition care. BACKGROUND: Due to shortened hospital stays, stroke survivors and caregivers must take responsibility for complex care on discharge from hospital to home. Gaps exist in the literature that synthesizes studies on hospital to home transition care. DESIGN: A systematic integrated review. DATA SOURCES: Six databases were searched systematically between 18 June 2018 - 31 October 2018 including Medline, CINAHL, Web of Science, ProQuest, Scopus and Science Direct. The search did not have a date limit. REVIEW METHODS: Studies that met the selection criteria were critically reviewed. Data were extracted from the studies for analyses. A convergent qualitative synthesis approach using inductive thematic synthesis was applied to the review. RESULTS: The analysis of 23 studies identified three major findings. First, health and social care systems influence transition care by either enabling stroke survivors and caregivers to manage transition care via well-coordinated services or preventing them from accessing services. Second, health professionals' partnership with stroke survivors and caregivers largely decides tailored support for them. Successful partnerships and engagements with stroke survivors and caregivers depend on organizational resources. Third, survivors and caregivers are at different levels of readiness to cope with challenges. Individualized support for them to develop resilience is highly regarded. CONCLUSION: Stroke survivors and caregivers encounter enormous challenges in self-management of hospital to home transition care. Further research is required to address their expectations of support during transition care. IMPACT: There is a lack of synthesis of studies on factors affecting hospital to home transition care for stroke survivors. Health and social care system designs, health professionals' commitment to individualized care and the self-management capability of stroke survivors and their caregivers have a profound influence on the transition care experiences.

First-time stroke survivors and caregivers' perceptions of being engaged in rehabilitation.

AIM: To explore community-dwelling first-time stroke survivors and family caregivers' perceptions of being engaged in stroke rehabilitation. BACKGROUND: Stroke is recognized as a worldwide common healthcare problem and the leading cause of adult disability. An holistic approach to rehabilitation can only be achieved by engaging stroke survivors and caregivers in all stages of recovery and by providing ongoing coordinated rehabilitation programmes. DESIGN: An interpretive study design was applied to the study. METHOD: In-depth semi-structured interviews with 22 community-dwelling first-time stroke survivors and caregivers were conducted in 2013. The interviews were audiotaped, transcribed and analysed using a thematic analysis. FINDINGS: Four major themes were identified. First, participants demonstrated low health literacy in stroke and their needs to learn about the disease and rehabilitation were usually ignored in busy clinical settings prior to discharge from hospital. Second, there was a lack of communication and continuity of treatment when the stroke survivors were transferred from one institution to another. Third, challenged with fragmented post-discharge rehabilitation services, the participants perceived that nurse-led coordination of rehabilitation was desirable. Fourth, participants perceived ongoing changing of rehabilitation goals in different stages of recovery. They expected to be engaged in ongoing rehabilitation planning and programmes. CONCLUSION: The findings of this study challenge service providers to realize a true partnership with stroke survivors and caregivers by working with them as one team that is led by nurses. Making the necessary changes requires mutual effort at both the systemic and individual levels with rehabilitation nurse-led coordination of rehabilitation programmes.

A pilot of an intervention delivered to Chinese- and Spanish-speaking carers of people with dementia in Australia.

There are limited language- and culture-specific support programs for carers of people with dementia living in Australia. A group intervention for use with Chinese and Spanish speakers in the United States was adapted to the Australian context, and a pilot study was undertaken with these 2 communities. The intervention is based on a cognitive behavioral therapy approach and was delivered by bilingual health professionals. The adapted material comprised 7 sessions, spanning 2 hours in duration. All 22 participants completed the Depression Anxiety and Stress Scale-Short form (DASS-21) pre- and postintervention. A significant decrease in depression, anxiety, and stress was observed among Spanish speakers; a significant decrease in depression and anxiety was present among the Chinese speakers. The implications are considered in the context of Australia's changing aged care service system.