Caregiving and receiving experiences in UK community mental health services during COVID-19 pandemic restrictions: A qualitative, co-produced study.

WHAT IS KNOWN ON THE SUBJECT?: At the outset of the COVID-19 pandemic, little was known about ways of delivering registered nurse practice within CMHTs under restrictions associated with a global pandemic. Emerging research focused on broad healthcare staff wellbeing during the pandemic. Qualitative research explored the overall response of COVID-19 on people with existing health needs or remote working more specifically. Over the past 2 years studies have emerged detailing experiences but no studies have used qualitative research to understand community mental health nurses and service users experience of services. WHAT THE PAPER ADDS TO EXISTING KNOWLEDGE?: This co-produced qualitative study is the first to explore the changes to CMHT care from the experience of service users and nurses later in the COVID-19 pandemic. The study questions whether recovery-based approaches are possible in a hybrid way of working. The findings identify challenges for nurses' well-being and work-life boundaries when working from home. The study adds to historical professional narratives of mental health nursing. WHAT ARE THE IMPLICATIONS FOR PRACTICE: While hybrid approaches developed in response to COVID-19 restrictions may offer more choice these approaches need further co-produced evaluation on the impact of recovery-focused care and therapeutic relationships. Mental health nurses need to review how future hybrid working continues to impact nurses' mental health and emotional safety. Nurses and service users need to raise awareness within society and policy on the impact that COVID-19 had on people with existing mental health conditions. ABSTRACT: Introduction Community Mental Health Team responses to COVID-19 included fundamental service delivery adaptations. Aim/Question Our co-produced study sought to understand which service delivery changes experienced by service users and registered nurses were helpful or unhelpful to caregiving and receiving. Method Qualitative semi-structured interviews were undertaken with 10 service users and 13 registered nurses from 3 NHS England sites. Co-produced throughout, people with lived experience of mental health services and nurses wishing to improve their research experience undertook interviews following training. Data were analysed thematically. Findings Care radically changed from in-person to large phone or video contact. This reportedly altered therapeutic relationship building and raised questions about whether recovery-focused care was possible. Hybrid working was viewed as helpful but raised challenges for nurse wellbeing. Discussion Changes to care delivery challenged the fundamentals of recovery-focused interventions and therapeutic relationships. Service users and nurses well-being consequently suffered. The impact of the pandemic on people with existing mental health conditions was poorly acknowledged in the media. Implications for Practice Recovery-focused interventions and relationship building need evaluating in the light of ongoing hybrid working. Teams need to consider the well-being of nurses engaged in complex service-user interactions from home.

Exploring the Feasibility of a Self-Managed Lifestyle Intervention, Based on Exercise and Behaviour Support, as an Adjunct Therapy to Compression: A Sub-Study Focusing on People with Venous Leg Ulcers and Early Neuro-Degenerative Diseases (FISCU-NDD).

BACKGROUND: The aim of this study was to adapt the "FISCU Home" intervention (a co-produced, self-managed and expert-supported lifestyle intervention comprising exercise and behaviour support aimed at people with Venous Leg Ulcers (VLUs), in a way that is suitable for the needs of people with combined VLUs and early-stage, Neuro-degenerative diseases (NDDs), and to explore its feasibility (e.g., estimate rates of recruitment and completion of sessions, calculate study adherence rates, assess participant satisfaction via participant interviews, and assess ease of data collection) within this clinical sub-group. METHODS: We recruited seven people belonging to this VLUs sub-group (e.g., people with early-stage dementia or Parkinson's), who were ≥18 years' old, had VLU(s) of diameter ≥1 cm, ABPI ≥ 0.8, had the ability to tolerate lower-leg compression and were receiving VLU treatment at home. In Phase 1, participants helped us adapt the intervention. In Phase 2 we carried out a 4-week "training crash-course". This consisted of three, 1 h, self-managed, exercise sessions per week (12 sessions in total), among the participants that completed the interviews. For Phase 3, we carried out post-interviews with all participants to investigate their study experiences, which were analysed using content analysis. RESULTS: All assessments were completed successfully (100% retention and assessment completion), with no exercise-related adverse events. All participants completed the 4-week intervention (100%; all sessions completed by all participants). CONCLUSION: Our findings suggest that the adapted intervention is feasible, enjoyable and well-received, and has the potential to provide clinical benefits to the participants.

Towards an understanding of the burdens of medication management affecting older people: the MEMORABLE realist synthesis.

BACKGROUND: More older people are living in the community with multiple diagnoses and medications. Managing multiple medications produces issues of unrivalled complexity for those involved. Despite increasing literature on the subject, gaps remain in understanding how, why and for whom complex medication management works, and therefore how best to improve practice and outcomes. MEMORABLE, MEdication Management in Older people: Realist Approaches Based on Literature and Evaluation, aimed to address these gaps. METHODS: MEMORABLE used realism to understand causal paths within medication management. Informed by RAMESES (Realist And Meta-narrative Evidence Synthesis: and Evolving Standards) guidelines, MEMORABLE involved three overlapping work packages: 1) Realist Review of the literature (24 articles on medication management exploring causality); 2) Realist Evaluation (50 realist-informed interviews with older people, family carers and health and care practitioners, explaining their experiences); and 3) data synthesis and theorising from 1) and 2). RESULTS: Medication management was viewed from the perspective of 'implementation' and structured into five stages: identifying a problem (Stage 1), getting a diagnosis and/or medications (Stage 2), starting, changing or stopping medications (Stage 3), continuing to take medications (Stage 4), and reviewing/reconciling medications (Stage 5). Three individual stages (1, 3 and 4) are conducted by the older person sometimes with family carer support when they balance routines, coping and risk. Stages 2 and 5 are interpersonal where the older person works with a practitioner-prescriber-reviewer, perhaps with carer involvement. Applying Normalisation Process Theory, four steps were identified within each stage: 1) sense making: information, clarification; 2) action: shared-decision-making; 3) reflection/monitoring; and 4) enduring relationships, based on collaboration and mutual trust. In a detailed analysis of Stage 5: Reviewing/reconciling medications, adopting the lens of 'burden', MEMORABLE identified five burdens amenable to mitigation: ambiguity, concealment, unfamiliarity, fragmentation and exclusion. Two initial improvement propositions were identified for further research: a risk screening tool and individualised information. CONCLUSIONS: Older people and family carers often find medication management challenging and burdensome particularly for complex regimens. Practitioners need to be aware of this potential challenge, and work with older people and their carers to minimise the burden associated with medication management. TRIAL REGISTRATION: PROSPERO 2016:CRD42016043506.

Age-appropriate services for people diagnosed with young onset dementia (YOD): a systematic review.

BACKGROUND: Literature agrees that post-diagnostic services for people living with young onset dementia (YOD) need to be age-appropriate, but there is insufficient evidence of 'what works' to inform service design and delivery. OBJECTIVE: To provide an evidence base of age-appropriate services and to review the perceived effectiveness of current interventions. METHODS: We undertook a systematic review including all types of research relating to interventions for YOD. We searched PubMed, CINHAL Plus, SCOPUS, EBSCO Host EJS, Social Care Online and Google Scholar, hand-searched journals and carried out lateral searches (July-October 2016). Included papers were synthesised qualitatively. Primary studies were critically appraised. RESULTS: Twenty articles (peer-reviewed [n = 10], descriptive accounts [n = 10]) discussing 195 participants (persons diagnosed with YOD [n = 94], caregivers [n = 91] and other [n = 10]) were identified for inclusion. Services enabled people with YOD to remain living at home for longer. However, service continuity was compromised by short-term project-based commissioning and ad-hoc service delivery. CONCLUSION: The evidence on the experience of living with YOD is not matched by research and the innovation needed to mitigate the impact of YOD. The inclusion of people with YOD and their caregivers in service design is critical when planning support in order to delay institutional care.

The advance care planning experiences of people with dementia, family caregivers and professionals: a synthesis of the qualitative literature.

There exists compelling evidence that advance care planning (ACP) remains a key factor in the delivery of appropriate end of life care and facilitates the timely transition to palliative care for people with dementia. Take up of ACP within the dementia population is low, especially when compared with other conditions. Quantitative research has helped in identifying some of the key factors in enabling or inhibiting the use of ACP within the dementia population. Qualitative research can, however, shed further light upon the experiences of all. We carried out a search of the qualitative literature addressing the ACP experiences of people with dementia, family caregivers and professionals. An approach to qualitative synthesis involving coding of original text, developing descriptive themes and generating analytical themes was utilized. We identified five papers and subsequently five analytical themes: breadth and scope of future planning; challenges to ACP; postponing ACP; confidence in systems and making ACP happen for people with dementia. The synthesized findings shed light on the ongoing challenges of the use and further development of ACP in the population of people with dementia. In particular attention is drawn to the difficulties in the timing of ACP and the preference for informal approaches to planning within the families of people affected by dementia. The ACP capacity of the workforce is also addressed. The paper reveals considerable complexity in undertaking ACP in a context of dementia. It is suggested that the preference for informal approaches and the timing of initial conversations be considered and that the skills of those involved in initiating discussions should be given primacy.

Developing a framework for a novel multi-disciplinary, multi-agency intervention(s), to improve medication management in community-dwelling older people on complex medication regimens (MEMORABLE)--a realist synthesis.

BACKGROUND: Medication-related adverse events have been estimated to be responsible for 5700 deaths and cost the UK £750 million annually. This burden falls disproportionately on older people. Outcomes from interventions to optimise medication management are caused by multiple context-sensitive mechanisms. The MEdication Management in Older people: REalist Approaches BAsed on Literature and Evaluation (MEMORABLE) project uses realist synthesis to understand how, why, for whom and in what context interventions, to improve medication management in older people on complex medication regimes residing in the community, work. METHOD: This realist synthesis uses secondary data and primary data from interviews to develop the programme theory. A realist logic of analysis will synthesise data both within and across the two data sources to inform the design of a complex intervention(s) to help improve medication management in older people. 1. Literature review The review (using realist synthesis) contains five stages to develop an initial programme theory to understand why processes are more or less successful and under which situations: focussing of the research question; developing the initial programme theory; developing the search strategy; selection and appraisal based on relevance and rigour; and data analysis/synthesis to develop and refine the programme theory and context, intervention and mechanism configurations. 2. Realist interviews Realist interviews will explore and refine our understanding of the programme theory developed from the realist synthesis. Up to 30 older people and their informal carers (15 older people with multi-morbidity, 10 informal carers and 5 older people with dementia), and 20 care staff will be interviewed. 3. Developing framework for the intervention(s) Data from the realist synthesis and interviews will be used to refine the programme theory for the intervention(s) to identify: the mechanisms that need to be 'triggered', and the contexts related to these mechanisms. Intervention strategies that change the contexts so the mechanisms are triggered to produce desired outcomes will be developed. Feedback on these strategies will be obtained. DISCUSSION: This realist synthesis aims to develop a framework (underpinned by our programme theory) for a novel multi-disciplinary, multi-agency intervention(s), to improve medication management in community-dwelling older people on complex medication regimens. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42016043506.

'You have to be mindful of whose story it is': the challenges of undertaking life story work with people with dementia and their family carers.

INTRODUCTION: Life story work is increasingly being used with people with dementia; this work offers a critical appraisal of some challenges that may be faced in practice. DESIGN AND METHODS: An in-depth case study analysis was undertaken to understand the experiences of people with dementia, family carers and care staff in using life story work in an NHS Mental Health and Social Care Trust. Data collection included semi-structured interviews, observation, conversations and field notes. FINDINGS: Private memories were sometimes recalled by the person with dementia that were not for inclusion in any written product; enabling the person with dementia to tell their own life story could be a challenge; quality of the life story books was variable and; at times, life story work may be overused with the person with dementia. CONCLUSION: Services should not be deterred from undertaking life story work with people with dementia, but there is a need to adopt a planned approach to its implementation that includes facilitation, education and supervision.

Introducing on-ward volunteers to work with patients with dementia.

This article reports on an evaluation of the effect of an on-ward volunteer service in an acute orthopaedic ward with a number of dementia patients. A mixed-methods evaluation was undertaken in 2012. This included interviews with individuals who have strategic, management, operational and clinical roles in the voluntary organisation and the NHS trust, focus group discussions with volunteers, non-participant observations of practice and focused conversations with ward staff. The service had a positive effect on patient experience. Patients were engaged through a variety of activities and enjoyed the volunteers' presence. Staff valued the initiative because they could see the difference that it made to patients and their own working lives. The lessons learned from the evaluation can inform the development of similar initiatives elsewhere and are relevant, given the emphasis in healthcare policy to improve patient experience.

Actively involving people with dementia in qualitative research.

AIMS AND OBJECTIVES: This paper aims to: • Consider the major challenges to involving people with dementia in qualitative research. • Critique a process consent framework. • Demonstrate the need for nurses and researchers to explore these issues in research and practice with people with dementia. • Consider the impact of the Mental Capacity Act 2005 on research with people with dementia. To achieve its aims, the authors will draw on current literature and use examples which explores the use of life story work with people with dementia by taking a qualitative approach. BACKGROUND: There is acceptance that researchers should consider ways of actively involving people with dementia in research as participants where appropriate to answering specific research questions. Process consent methods have been advocated as an ethical way forward in recruiting and gaining consent for people with dementia, the Mental Capacity Act offers guidance to both practitioners and researchers. DESIGN AND METHOD: This paper does not seek to be a comprehensive review of the current literature but is a discussion paper appraising a process consent framework against current literature and drawing on the lead author's PhD study, exploring life story work with older people with dementia. RESULTS AND CONCLUSIONS: The Mental Capacity Act and process consent frameworks compliment one another, and their use should be considered when researching issues affecting older people with dementia. Researchers and practitioners should work more closely to ensure that the principles of process consent are achieved. Process consent models can equally be applied to everyday nursing practice. RELEVANCE TO CLINICAL PRACTICE: Process consent models can provide an ethical and practical framework to ensure that consent is continually assessed in people with dementia with all clinical interventions. The paper also draws on literature exploring practical ways of involving people with dementia in evaluating service delivery.

The use of life story work with people with dementia to enhance person-centred care.

BACKGROUND: Person-centred care has been linked with quality of care but difficulties remain in person-centred care being implemented in care practice. This study explores the use of life story work to enhance person-centred care with people with dementia. AIMS AND OBJECTIVES: The study investigates how life story work is: understood and developed in practice; experienced by all participants and affects the delivery and outcomes of care. DESIGN AND METHODS: The experience of older people with dementia, family carers and care staff in using life story work was explored within an NHS Health and Social Care Trust. A multiple case study design was adopted within a constructivist approach. Semi-structured interviews, observation, conversations were employed. FINDINGS: Life story work has the potential to: enable care staff to see the person behind the patient; allow family carers to uphold their relatives' personhood; enable the voice of the person with dementia to be heard, verbally and non-verbally; be enjoyable for all concerned and enable the person with dementia to feel proud about themselves and their lives. CONCLUSION AND IMPLICATIONS FOR PRACTICE: Life story work has the potential to enhance person-centred care for older people with dementia and their families. Taking a practice development approach ensures that life story work can be implemented sensitively and is sustained in practice.

Promoting nutrition for people with mental health problems.

This article examines the issue of nutrition and mental health for adults of all ages with a range of mental health needs.

Life story work in health and social care: systematic literature review.

AIM: The aim of this paper is to review the literature on life story work in health and social care practice. BACKGROUND: Life story work as an intervention has been used with a number of health and social care clients, such as children people with learning disabilities, older people on medical wards and with older people who have dementia. It may help challenge ageist attitudes and assumptions, be used as a basis for individualized care, improve assessment, assist in transitions between different care environments, and help to develop improved relationships between care staff and family carers. However, to date there has been no attempt to collate the findings from published accounts. METHODS: A systematic search of the literature on life story work was conducted in February 2004, using nursing, medical and social science databases and a combination of thesaurus and free text search terms. This revealed over 1000 publications; the use of carefully constructed inclusion and exclusion criteria identified 51 relevant items. Fourteen were subsequently selected and reviewed using a set of reflective critical appraisal questions. FINDINGS: A range of methodological approaches has been adopted to explore the use of life story work with no one specific methodology prevailing. The work has been most frequently used with older people and people with a learning disability and life story books are the most common approach. Staff perceptions of life story work have been explored, but patient and carer views are less frequently reported. The findings of the studies are discussed in broad themes, offering some tentative recommendations for using life story work in practice. CONCLUSION: Evidence on the use of life story work is immature, leading to the recommendation for more research. Although appraising literature from a range of approaches is complex, there are some potentially far-reaching benefits of life story work in health and social care practice.