Dataset Information

A drive for structure: A longitudinal qualitative study of the implementation of the Carer Support Needs Assessment Tool (CSNAT) intervention during hospital discharge at end of life.

ABSTRACT:

Background

Informal carers are essential in enabling discharge home from hospital at end of life and supporting palliative patients at home, but are often ill-prepared for the role. Carers' support needs are rarely considered at discharge. If carers are less able to cope with home care, patient care may suffer and readmission may become more likely.

Aim

To investigate the implementation of an evidence-based Carer Support Needs Assessment Tool (CSNAT) intervention to support carers during hospital discharge at end of life.

Design

Longitudinal qualitative study with thematic analysis.

Setting/participants

One National Health Service Trust in England: 12 hospital practitioners, one hospital administrator and four community practitioners. We provided training in CSNAT intervention use and implementation. Practitioners delivered the intervention for 6 months. Data collection was conducted in three phases: (1) pre-implementation interviews exploring understandings, anticipated benefits and challenges of the intervention; (2) observations of team meetings and review of intervention procedures and (3) follow-up interviews exploring experiences of working with the intervention.

Results

Despite efforts from practitioners, implementation was challenging. Three main themes captured facilitators and barriers to implementation: (1) structure and focus within carer support; (2) the 'right' people to implement the intervention and (3) practical implementation challenges.

Conclusions

Structure and focus may facilitate implementation, but the dominance of outcomes measurement and performance metrics in health systems may powerfully frame perceptions of the intervention and implementation decisions. There is uncertainty over who is best-placed or responsible for supporting carers around hospital discharge, and challenges in connecting with carers prior to discharge.

SUBMITTER: Hall A

PROVIDER: S-EPMC7388143 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

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Publications

A drive for structure: A longitudinal qualitative study of the implementation of the Carer Support Needs Assessment Tool (CSNAT) intervention during hospital discharge at end of life.

Hall Alex A Ewing Gail G Rowland Christine C Grande Gunn G

Palliative medicine 20200603 8

<h4>Background</h4>Informal carers are essential in enabling discharge home from hospital at end of life and supporting palliative patients at home, but are often ill-prepared for the role. Carers' support needs are rarely considered at discharge. If carers are less able to cope with home care, patient care may suffer and readmission may become more likely.<h4>Aim</h4>To investigate the implementation of an evidence-based Carer Support Needs Assessment Tool (CSNAT) intervention to support carers ...[more]

PMID: 32491967

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Project description:IntroductionInformal caregivers are essential in supporting end-of-life patients at home but are often ill-prepared for the carer role. There is growing interest in the development of tools to assess caregiver support needs and a recognised need for a greater focus on addressing inequities in end-of-life care. We plan to undertake a scoping review of available literature to (1) identify and describe tools developed to assess the support needs of informal caregivers in end-of-life care; (2) report on any inequities and under-represented groups in tool development and use.Methods and analysisThe review will conform to best practice methodological guidance (Joanna Briggs Institute) for scoping reviews. The search strategy will target published and unpublished studies using any methodology, which reports on developing or using tools or measures to assess informal carer support needs in end-of-life/palliative care settings. The following databases will be searched: MEDLINE, CINAHL, PsycINFO, Web of Science, ASSIA and Proquest. Both title/abstract screening and full-text assessment will be undertaken to ensure eligibility. Searches will be conducted between May and December 2024. We will extract data relating to (1) tools/measures identified, and outcome measures used to assess these; (2) participant characteristics. Extracted data will be tabulated with accompanying narrative description to address the review objectives. Data will be extracted and write-up will be completed between January and May 2025.Ethics and disseminationThis scoping review will provide an overview of the tools developed to identify and assess informal caregiver support needs in palliative and end-of-life care. The identification of any inequities will increase awareness of potentially underserved groups and contexts within the current literature, highlighting how future research and resource can be more equitably focused and implemented in a way that does not further embed disparity. Findings will be made publicly available through the Open Science Framework and disseminated through a peer-reviewed publication. As a scoping review of available literature, this work does not require ethical approval.

Project description:IntroductionParent-carers of children and young people (CYP) with mental health problems are at greater risk of poor outcomes, such as poor physical and mental health. Peer interventions for parent-carers of CYP with disabilities may improve parent-carer outcomes. This qualitative study investigates parent-carer experiences of using Parental Minds (PM), a multi-component peer support service for parent-carers of CYP with disabilities.MethodsTwelve current service-users and four staff/volunteers at PM participated in one-to-one semi-structured interviews. All participants were white females, except for one service-user who was male. All interviews were recorded and transcribed verbatim. Thematic analysis of results was used to explore perceived benefits and disadvantages of PM and possible behaviour change mechanisms.ResultsThree themes and eight subthemes were identified. Participants identified that internal and external factors influence their self-concept. The identification of themselves as a priority, and empowerment by reassurance and affirmation lead to improved parent-carer self-efficacy and agency to better care for their CYP. Participants described the difficulty of speaking honestly with friends and family about what they experience because it is perceived as different to what "normal" parents experience. From participant accounts, PM enables the construction of a support network and links external services to help manage family circumstances rather than offer curative treatment/intervention. Proactive and immediate advice which is constantly and consistently available was valued by participants. Participants expressed the need for a flexible range of service components which provide holistic support that encompasses both health and social care.ConclusionsPM was perceived to be beneficial as a multi-component peer support service which increases parenting self-efficacy and empowerment, reduces isolation, improves access to services, and is tailored to individual needs. Parent-carers reported benefits in parenting and wellbeing practices. The development of a refined logic model will inform a future study of the effectiveness of PM on parent-carer outcomes.

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Dataset Information

A drive for structure: A longitudinal qualitative study of the implementation of the Carer Support Needs Assessment Tool (CSNAT) intervention during hospital discharge at end of life.

Background

Aim

Design

Setting/participants

Results

Conclusions

Publications

A drive for structure: A longitudinal qualitative study of the implementation of the Carer Support Needs Assessment Tool (CSNAT) intervention during hospital discharge at end of life.

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