Lynn Austin

Developing a person-centred approach to carer assessment and support

Community nurses play an important role in providing palliative care and support for patients and carers at home. The Carer Support Needs Assessment Tool (CSNAT) provides practitioners with an evidence-based comprehensive tool to use with carers in palliative home care. As a practice tool, the CSNAT uses a person-centred approach-that is, the process of carer assessment and support is facilitated by practitioners but is carerled. In this paper, the CSNAT research team provides an overview of the development of the tool and the benefits for both carers and practitioners arising from using the CSNAT as a person-centred approach in practice. The authors outline the five stages of the CSNAT approach to assist practitioners wishing to implement the CSNAT in practice.

The role of the Carer Support Needs Assessment Tool in palliative home care: A qualitative study of practitioners’ perspectives of its impact and mechanisms of action

Background: The importance of supporting family carers is well recognised in healthcare policy. The Carer Support Needs Assessment Tool is an evidence-based, comprehensive measure of carer support needs to facilitate carer support in palliative home care. Aim: To examine practitioner perspectives of the role of the Carer Support Needs Assessment Tool intervention in palliative home care to identify its impact and mechanisms of action. Design: Qualitative – practitioner accounts of implementation (interviews, focus groups, reflective audio diaries) plus researcher field notes. Setting/participants: A total of 29 staff members from two hospice home-care services – contrasting geographical locations, different service sizes and staff composition. A thematic analysis was conducted. Results: Existing approaches to identification of carer needs were informal and unstructured. Practitioners expressed some concerns, pre-implementation, about negative impacts of the Carer Support Needs Assessment Tool on carers and expectations raised about support available. In contrast, post-implementation, the Carer Support Needs Assessment Tool provided positive impacts when used as part of a carer-led assessment and support process: it made support needs visible, legitimised support for carers and opened up different conversations with carers. The mechanisms of action that enabled the Carer Support Needs Assessment Tool to make a difference were creating space for the separate needs of carers, providing an opportunity for carers to express support needs and responding to carers’ self-defined priorities. Conclusion: The Carer Support Needs Assessment Tool delivered benefits through a change in practice to an identifiable, separate assessment process for carers, facilitated by practitioners but carer-led. Used routinely with all carers, the Carer Support Needs Assessment Tool has the potential to normalise carer assessment and support, facilitate delivery of carer-identified support and enable effective targeting of resources.

Assessing the impact of a Carer Support Needs Assessment Tool (CSNAT) intervention in palliative home care: a stepped wedge cluster trial

Objectives To test the impact on family carers of a Carer Support Needs Assessment Tool (CSNAT) intervention to facilitate carer-led assessment and support during end of life care. Method Mixed method, part-randomised, stepped wedge cluster trial with 6 palliative home care services comparing carers receiving the intervention with those receiving standard care. Postal survey with carers 4–5 months postbereavement measured adequacy of end of life support, current mental and physical health (Short Form 12 Health Survey SF-12), level of grief (Texas Revised Inventory of Grief, TRIG) and distress (Distress Thermometer, DT), place of death and carer satisfaction with place of death. Results Surveys were sent to 3260 (76%) carers of 4311 deceased patients; 681 (21%) were returned (N=333 control, N=348 intervention). Compared with controls, intervention carers had significantly lower levels of early grief, better psychological and physical health, were more likely to feel the place of death was right, and patients were more likely to die at home. However, differences were small and process measures showed low level of implementation, indicating differences may partially relate to increased awareness of carer issues rather than a direct impact of the intervention. Conclusions Carers had better outcomes in the intervention condition, albeit modest. If this can be achieved through low level implementation and awareness raising of carers’ needs from implementation activities, substantial impact should be possible if the CSNAT intervention can be fully implemented with a majority of carers. The study illustrates challenges of implementing and testing a complex intervention in real-life practice and of achieving comprehensive carer assessment and support in line with government recommendations.

Factors influencing practitioner adoption of carer-led assessment in palliative homecare: a qualitative study of the use of the Carer Support Needs Assessment Tool (CSNAT)

Introduction Informal caregivers play a pivotal role in supporting patients approaching the end of life. The Carer Support Needs Assessment Tool (CSNAT) is designed to facilitate person-centred assessment and support through a process that is practitioner-facilitated, but carer-led. This study explored practitioners’ experiences of implementing the CSNAT in palliative homecare. Methods We conducted qualitative interviews/focus groups with 20 practitioners in one UK hospice homecare service (18 nurses, two healthcare assistants) before and after the implementation of the CSNAT. Thematic analysis of the data was underpinned by framework analysis. Results Not all practitioners appreciated that using the CSNAT required a shift towards a more person-centred approach to assessment; consequently they tagged the tool onto their existing practitioner-led practice. Practitioners who did use the CSNAT as intended were able to act as role models and support their colleagues in making this transition. Practitioners’ comments revealed a number of contradictions: 1) Most felt that they ‘already do’ identify carer support needs, but feared using the CSNAT could increase their workload; 2) some worried about introducing the CSNAT ‘too soon’, but recognised that it was ‘too late’ once patients were close to the end of life; 3) whilst practitioners stated ‘they were there for the family as well as the patient’, care provision was overtly centred around patients. Conclusion This study provides vital insights into barriers and facilitators to implementing the CSNAT as part of a person-centred approach to assessment. The findings identified the training and support required to help practitioners make this transition to this new way of working.

Who cares for the carers at hospital discharge at the end of life? A qualitative study of current practice in discharge planning and the potential value of using The Carer Support Needs Assessment Tool (CSNAT) Approach:

Background: Carer factors prevent patients achieving timely and appropriate hospital discharge. There is a lack of research into interventions to support carers at hospital discharge. Aim: To explore whether and how family carers are currently supported during patient discharge at end of life; to assess perceived benefits, acceptability and feasibility of using The Carer Support Needs Assessment Tool (CSNAT) Approach in the hospital setting to support carers. Design: Qualitative. Setting/participants: Three National Health Service Trusts in England: focus groups with 40 hospital and community-based practitioners and 22 carer interviews about experiences of carer support during hospital discharge and views of The CSNAT Approach. Two workshops brought together 14 practitioners and five carers to discuss implementation issues. Framework analysis was conducted. Results: Current barriers to supporting carers at hospital discharge were an organisational focus on patients’ needs, what practitioners perceived as carers’ often ‘unrealistic expectations’ of end-of-life caregiving at home and lack of awareness of patients’ end-of-life situation. The CSNAT Approach was viewed as enabling carer support and addressing difficulties of discussing the realities of supporting someone at home towards end of life. Implementation in hospital required organisational considerations of practitioner workload and training. To enhance carer support, a two-stage process of assessment and support (hospital with community follow-up) was suggested using the CSNAT as a carer-held record to manage the transition. Conclusion: This study identifies a novel intervention, which expands the focus of discharge planning to include assessment of carers’ support needs at transition, potentially preventing breakdown of care at home and patient readmissions to hospital.

Enabling successful hospital discharge to home at end of life: can a carer support needs assessment tool (CSNAT) help improve support for family carers?

Introduction Successful hospital discharge and prevention of readmission often depend on carers’ ability to support patients. Aim To investigate how carers are supported during patient discharge from acute care towards end of life (EOL) and suitability of using a Carer Support Needs Assessment Tool (CSNAT) to improve this support. Methods Qualitative design: focus groups (FGs) with 40 practitioners supporting patient discharge from three English acute hospital trusts; interviews with 22 carers of patients discharged. 14 practitioners and 5 carers joined two final workshops. FGs/interviews/workshops explored current discharge processes and potential value of using CSNAT. Thematic framework analysis was conducted. Results Both practitioners and carers viewed CSNAT as highly relevant in supporting carers at discharge. Discharge processes were heavily focussed on patients: carers were consulted but about patients’ needs; there was no systematic approach to supporting carers. CSNAT was identified as a means of facilitating much needed EOL conversations which often were absent, enabling carers to articulate concerns, and managing carers’ expectations of their caregiving role at EOL and support available (or not) in the community. However, palliative care discharges were complex: from many different wards involving different practitioners. No single professional group was identified as best placed to support carers. Feasibility issues included skills, confidence and time for carer assessment and support. A two stage process using CSNAT earlier in hospital admission, then as a carer-held record to manage transition to home were seen as ways forward. Conclusion CSNAT shows good potential to enhance carer support at hospital discharge and play a role in preventing readmissions towards EOL. References Ewing G, Brundle C, Payne S, Grande G. The Carer Support Needs Assessment Tool (CSNAT) for use in palliative and end-of-life care at home: A validation study. J Pain Symptom Manage 2013;46:395–405 Ewing G, Grande GE. Development of a Carer Support Needs Assessment Tool (CSNAT) for end of life care practice at home: a qualitative study. Palliat Med 2013;27:244–256

O-4 Enabling successful hospital discharge to home at end-of-life: how can we support family carers?

Background Successful hospital discharge and prevention of readmission often depend on carers’ ability to support patients. Aim To investigate how carers are supported during patient discharge from acute care towards end-of-life (EOL) and suitability of using the Carer Support Needs Assessment Tool (CSNAT) to improve carer support at discharge. Methods Qualitative design: focus groups (FGs) with 40 practitioners supporting patient discharge from three English acute hospital trusts; interviews with 22 carers of patients discharged. 14 practitioners and five carers joined two final workshops. FGs/interviews/workshops explored current discharge processes and potential value of using CSNAT. Thematic framework analysis conducted. Results Discharge processes were heavily focussed on patients’ needs: there was no systematic approach to supporting carers. Practitioners and carers viewed CSNAT as highly relevant and could be used to facilitate much needed EOL conversations which often were absent and to manage carers’ expectations of their caregiving role at EOL, including support available (or not) in the community. They also provided advice on feasibility of using the five stage CSNAT approach at discharge. Stage 1. CSNAT introduction was seen as crucial, to overcome carer reluctance for support for themselves and to avoid it being viewed as ‘another leaflet’ Stage 2. Carers’ consideration of needs: useful to help manage expectations of caregiving, but carers need to be given time to reflect Stage 3. Assessment conversation: CSNAT questions seen as a useful trigger, but a separate space and a separate focus from patents needed. Stage 4. Action planning: an essential part of the process – giving out the CSNAT was not ‘job done’ Stage 5. Review: challenge in this context is the transition to home, but CSNAT as a carer-held record was a possible solution. Conclusion CSNAT shows good potential to enhance carer support at hospital discharge and play a role in preventing readmissions towards EOL. Funder: Marie Curie.