Specialist nursing support for unpaid carers of people with dementia: a mixed-methods feasibility study

Background: Unpaid carers are the mainstay of support for people with dementia. Admiral Nursing (AN) is the only specialist nursing service that specifically focuses on supporting such carers, but evidence of its effectiveness, costs and relationships with other health and social care services is limited. This project aimed to address this gap and explore the feasibility of a full-scale formal evaluation. Objectives: To explore the relationships between characteristics of carers and people with dementia, service type and input and outcomes; to develop and test data collection methods for subsequent economic evaluation; to explore the effect of AN on outcomes and costs, compared with usual care; to explore the perceived system-wide impact of specialist support for carers of people with dementia, compared with usual care; and to implement new data collection methods in AN, which could also be used by other services, to facilitate evaluation. Design: A mixed-methods study, using secondary analysis of an administrative data set, and primary (cross-sectional) quantitative and qualitative data collection. Setting: Qualitative research with carers in four areas of England; a survey of carers in 32 local authority areas (16 with and 16 without AN); and qualitative interviews with professionals in four areas. Participants: Thirty-five carers of people with dementia and 20 professionals were interviewed qualitatively; 346 carers completed in-scope questionnaires (46% through AN services and 54% from matched non-AN areas). Interventions: Specialist nursing support for carers of people with dementia (with AN as an exemplar) compared with usual care. Main outcome measures: The Adult Social Care Outcomes Toolkit for Carers; the EuroQol-5 Dimensions, five-level version; and the Caregiver Self-Efficacy for Managing Dementia Scale. Data sources: Dementia UK’s AN administrative data set. Results: Admiral Nurses are successfully targeting the most complex cases. They work predominantly with older carers who have the main responsibility for the person with dementia, who are heavily involved in caring activity and who may be at risk. Three outcome areas that are important to carers of people with dementia and are potentially affected by receiving support are (1) carer self-efficacy, (2) carer quality of life (3) and carer mental and physical health. The carers in the survey receiving support from AN were older, were more heavily involved in caring and had poorer outcomes than carers not in receipt of such support. When these differences were controlled for, carers supported by AN had better outcomes, although the differences did not reach statistical significance. Health and social care costs were similar in both groups. The perceived system-wide impact of services, such as AN, is not well understood by professional stakeholders. Limitations: Challenges were experienced in identifying similar carers in areas with or without an AN service and in the cross-sectional nature of the work. Conclusions: Specialist nursing support to carers of people with dementia may enable them to continue providing care to the end or very close to the end of the dementia journey. The outcomes for such carers may be no different from, or even slightly better than, those of similar carers without this support, although the costs to health and social care services are the same in each case. Future work: Future research could investigate the impact of specialist support for carers on admission to long-term care. There is also a need for more work to encourage routine use of the selected outcome measures in dementia service delivery. Funding: The National Institute for Health Research Health Services and Delivery Research programme

Reablement services for people at risk of needing social care: the MoRe mixed-methods evaluation

BACKGROUND: Reablement is an intensive, time-limited intervention for people at risk of needing social care or an increased intensity of care. Differing from home care, it seeks to restore functioning and self-care skills. In England, it is a core element of intermediate care. The existing evidence base is limited. OBJECTIVES: To describe reablement services in England and develop a service model typology; to conduct a mixed-methods comparative evaluation of service models investigating outcomes, factors that have an impact on outcomes, costs and cost-effectiveness, and user and practitioner experiences; and to investigate specialist reablement services/practices for people with dementia. METHODS: Work package (WP) 1, which took place in 2015, surveyed reablement services in England. Data were collected on organisational characteristics, service delivery and practice, and service costs and caseload. WP2 was an observational study of three reablement services, each representing a different service model. Data were collected on health (EuroQol-5 Dimensions, five-level version) and social care related (Adult Social Care Outcomes Toolkit – self-completed) quality of life, practitioner (Barthel Index of Activities of Daily Living) and self-reported (Nottingham Extended Activities of Daily Living scale) functioning, individual and service characteristics, and resource use. They were collected on entry into reablement (n = 186), at discharge (n = 128) and, for those reaching the point on the study timeline, at 6 months post discharge (n = 64). Interviews with staff and service users explored experiences of delivering or receiving reablement and its perceived impacts. In WP3, staff in eight reablement services were interviewed to investigate their experiences of reabling people with dementia. RESULTS: A total of 201 services in 139 local authorities took part in the survey. Services varied in their organisational base, their relationship with other intermediate care services, their use of outsourced providers, their skill mix and the scope of their reablement input. These characteristics influenced aspects of service delivery and practice. The average cost per case was £1728. Lower than expected sample sizes meant that a comparison of service models in WP2 was not possible. The findings are preliminary. At discharge (T1), significant improvements in mean score on outcome measures, except self-reported functioning, were observed. Further improvements were observed at 6 months post discharge (T2), but these were significant for self-reported functioning only. There was some evidence that individual (e.g. engagement, mental health) and service (e.g. service structure) characteristics were associated with outcomes and resource use at T1. Staff’s views on factors affecting outcomes typically aligned with, or offered possible explanations for, these associations. However, it was not possible to establish the significance of these findings in terms of practice or commissioning decisions. Service users expressed satisfaction with reablement and identified two core impacts: regained independence and, during reablement, companionship. Staff participating in WP3 believed that people with dementia can benefit from reablement, but objectives may differ and expectations for regained independence may be inappropriate. Furthermore, staff believed that flexibility in practice (e.g. duration of home visits) should be incorporated into delivery models and adequate provision made for specialist training of staff. CONCLUSIONS: The study contributes to our understanding of reablement, and what the impacts are on outcomes and costs. Staff believe that reablement can be appropriate for people with dementia. Findings will be of interest to commissioners and service managers. Future research should further investigate the factors that have an impact on outcomes, and reabling people with dementia

Patient influence in home-based reablement for older persons: qualitative research

Abstract Background Reablement services are rehabilitation for older people living at home, being person-centered in information, mapping and the goal-setting conversation. The purpose of this study was to gain knowledge about conversation processes and patient influence in formulating the patients’ goals. There are two research questions: How do conversation theme, structure and processes appear in interactions aiming to decide goals of home-based reablement rehabilitation for the elderly? How professionals’ communication skills do influence on patients' participation in conversation about everyday life and goals of home-based reablement? Methods A qualitative field study explored eight cases of naturally occurring conversations between patients and healthcare professionals in a rehabilitation team. Patients were aged 67–90 years old. The reablement team consisted of an occupational therapist, physiotherapist, nurse and care workers. Data was collected by audio recording the conversations. Transcribed text was analyzed for conversational theme and communication patterns as they emerged within main themes. Results Patient participation differed with various professional leadership and communication in the information, mapping and goalsetting process. In the data material in its entirety, conversations consisted mainly of three parts where each part dealt with one of the three main topics. The first part was “Introduction to the program.” The main part of the talk was about mapping (“Varying patient participation when discussing everyday life”), while the last part was about goal setting (“Goals of rehabilitation”). Conclusions Home-based reablement requires communication skills to encourage user participation, and mapping of resources and needs, leading to the formulation of objectives. Professional health workers must master integrating two intentions: goal-oriented and person-centered communication that requires communication skills and leadership ability in communication, promoting patient influence and goal-setting. Quality of such conversations is complex, and requires the ability to apply integrated knowledge, skills and attitudes appropriate to communication situations

A research study to identify facilitators and barriers to outcome measure implementation

Aim: To identify facilitators and barriers to implementing outcome measures. Methods: An action-research approach within a hospice and nursing home was used. Staff took part in semistructured interviews pre- and post-implementation of the Palliative Care Outcome Scale (POS), completed diaries and participated in monthly meetings. Findings: Qualitative content analysis identified barriers to implementation including: a top-down decision-making approach; outcome measures perceived as time-consuming to use; limited resources for data analysis; and a lack of knowledge of the importance of outcome measures. Facilitators to successful implementation include: involving all staff in decisions about implementation; and using a measure that can be adapted to organization needs and clinical practice. The benefits of using the measure are rapidly noticeable. Conclusions: Given the need to evaluate services and the role outcome measures can have within clinical governance, this article indicates methods by which measures may be more successfully implemented

What is important to measure in the last months and weeks of life?: A modified nominal group study.

Background: Identifying the most important issues for palliative care patients and their families, and assessing whether services address these appropriately is important. Little is known about the views of United Kingdom service users and whether, and in what ways, they differ from those in the published literature from other countries, or from health professionals. Aims: To investigate what is important to measure at the end of life from the perspectives of United Kingdom patients, bereaved relatives and health care professionals. Methods: Ten focus groups, using a modified nominal group technique, with a total of 75 participants (10 patients, 35 professionals and 30 bereaved relatives) enabled issues participants thought important to measure at the end of life to be identified and prioritised using ratings and rankings. Thematic analysis of the data was conducted to enable cross-group comparison. Findings: Seven themes were identified as most important to participants: symptom management; choice and control; dignity; quality of life; preparation; relationships; and co-ordination and continuity. Bereaved relatives and professionals emphasised symptom management, relationships and quality of life, whilst patients prioritised issues around preparation. Conclusions: The study was successful in identifying aspects of end of life care that are important to patients, families and health professionals in the United Kingdom. Although participants were not representative of the wider population in the United Kingdom, the degree of concordance with published studies from outside the United Kingdom increases the credibility of the findings. Quality assurance initiatives need to ensure that they act on information such as this on users’ priorities. Further research is needed to test out the findings in other settings in the United Kingdom, to build on the findings about different participants’ views and to identify similarities and variations between countries