Homecare workers needs and experiences in end of life care: rapid review.

BACKGROUND: Social homecare workers provide essential care to those living at home at the end of life. In the context of a service experiencing difficulties in attracting and retaining staff, we have limited knowledge about the training, support needs and experiences of this group. AIM: To gain a timely understanding from the international literature of the experience, training and support needs of homecare workers providing end-of-life care. METHODS: We conducted a rapid review and narrative synthesis using the recommendations of the Cochrane Rapid Reviews Methods Group. Building on a previous review, social homecare worker and end-of-life search terms were used to identify studies. Quality appraisal was conducted using a multimethods tool. DATA SOURCES: CINAHL and Medline databases (2011-2023; English language). RESULTS: 19 papers were included representing 2510 participants (91% women) providing new and deeper insights. Four themes were generated: (1) emotional support; homecare workers need to manage complex and distressing situations, navigating their own, their clients' and clients' family, emotions; (2) interaction with other social and healthcare workers; homecare workers are isolated from, and undervalued and poorly understood by the wider healthcare team; (3) training and support; recognising the deteriorating client, symptom management, practicalities around death, communications skills and supervision; (4) recognising good practice; examples of good practice exist but data regarding effectiveness or implementation of interventions are scant. CONCLUSIONS: Social homecare workers are essential for end-of-life care at home but are inadequately trained, often isolated and underappreciated. Our findings are important for policy-makers addressing this crucial challenge, and service providers in social and healthcare.

Experiences of a Novel Integrated Service for Older Adults at Risk of Frailty: A Qualitative Study.

The UK has a significant and growing population of older adults with frailty and complex healthcare needs, necessitating innovative care solutions. This study aimed to explore patients' and carers' experiences of a novel integrated service that was set up to address the increasing healthcare needs of older people living with frailty. A qualitative study that combined free-text survey questions with in-depth interviews. This study is part of a larger non-randomized trial of the service, with evaluation of wellbeing and quality of life at baseline, 2 to 4 weeks, and 10 to 14 weeks. Patients (aged 65 and above) with an electronic Frailty Index in the severe range and their informal family carers participated in this study. Data were collected between April 2019 and March 2020. Free text survey responses and interview data were subjected to reflexive thematic analyses. Four themes were generated: the overall experience of the service; interactions within the service; treatment and interventions; and outcomes due to the service. Most participants wanted further follow-up and more extensive integration with other services. Most participants described their overall experience positively, especially the available time to address their full range of concerns, but opportunities to integrate the service more fully and to extend follow-up remain.

A non-randomised controlled study to assess the effectiveness of a new proactive multidisciplinary care intervention for older people living with frailty.

BACKGROUND: Integrated care may improve outcomes for older people living with frailty. We aimed to assess the effectiveness of a new, anticipatory, multidisciplinary care service in improving the wellbeing and quality of life (QoL) of older people living with severe frailty. METHODS: A community-based non-randomised controlled study. Participants (≥65 years, electronic Frailty Index ≥0.36) received either the new integrated care service plus usual care, or usual care alone. Data collection was at three time points: baseline, 2-4 weeks, and 10-14 weeks. The primary outcome was patient wellbeing (symptoms and other concerns) at 2-4 weeks, measured using the Integrated Palliative care Outcome Scale (IPOS); the secondary outcome was QoL, measured using EQ-5D-5L. To test duration of effect and safety, wellbeing and QoL were also measured at 10-14 weeks. Descriptive statistics were used to characterise and compare intervention and control groups (eligible but had not accessed the new service), with t-test, Chi-Square, or Mann-Whitney U tests (as appropriate) to test differences at each time point. Generalised linear modelling, with propensity score matching, was used for further group comparisons. Data were analysed using STATA v17. RESULTS: 199 intervention and 54 control participants were recruited. At baseline, intervention and control groups were similar in age, gender, ethnicity, living status, and body mass index, but not functional status or area deprivation score. At 2-4 weeks, wellbeing had improved in the intervention group but worsened in the control (median IPOS -5 versus 2, p<0.001). QoL improved in the intervention group but was unchanged in the control (median EQ-5D-5L 0.12, versus 0.00, p<0.001). After adjusting for age, gender, and living status, the intervention group had an average total IPOS score reduction at 2-4 weeks of 6.34 (95% CI: -9.01: -4.26, p<0.05); this improvement was sustained, with an average total IPOS score reduction at 10-14 weeks of 6.36 (95% CI: -8.91:-3.80, p<0.05). After propensity score matching based on functional status/area deprivation, modelling showed similar results, with a reduction in IPOS score at 2-4 weeks in the intervention group of 7.88 (95% CI: -12.80: -2.96, p<0.001). CONCLUSIONS: Our findings suggest that the new, anticipatory, multidisciplinary care service may have improved the overall wellbeing and quality of life of older people living with frailty at 2-4 weeks and the improvement in wellbeing was sustained at three months. ETHICS APPROVAL: NHS Research Ethics Committee 18/YH/0470 and IRAS-250981. TRIAL REGISTRATION: The trial was retrospectively registered at the International Standard Randomised Controlled Trial Number (ISRCTN) registry (registration date: 01/08/2022, registration number: ISRCTN10613839).

Identification and Assessment of Breathlessness in Clinical Practice: A Systematic Review and Narrative Synthesis.

CONTEXT: Breathlessness is common in chronic conditions but often goes unidentified by clinicians. It is important to understand how identification and assessment of breathlessness occurs across health care settings, to promote routine outcome assessment and access to treatment. OBJECTIVE: The objective of this study was to summarize how breathlessness is identified and assessed in adults with chronic conditions across different health care settings. METHODS: This is a systematic review and descriptive narrative synthesis (PROSPERO registration: CRD42018089782). Searches were conducted on Medline, PsycINFO, Cochrane Library, Embase, and CINAHL (2000-2018) and reference lists. Screening was conducted by two independent reviewers, with access to a third, against inclusion criteria. Data were extracted using a bespoke proforma. RESULTS: Ninety-seven studies were included, conducted in primary care (n = 9), secondary care (n = 53), and specialist palliative care (n = 35). Twenty-five measures of identification and 41 measures of assessment of breathlessness were used. Primary and secondary care used a range of measures to assess breathlessness severity, cause, and impact for people with chronic obstructive pulmonary disease. Specialist palliative care used measures assessing broader symptom severity and function with less focus on overall quality of life. Few studies were identified from primary care. CONCLUSION: Various measures were identified, reflective of the setting's purpose. However, this highlights missed opportunities for breathlessness management across settings; primary care is particularly well placed to diagnose and support breathlessness. The chronic obstructive pulmonary disease approach (where symptoms and quality of life are part of disease management) could apply to other conditions. Better documentation of holistic patient-reported measures may drive service improvement in specialist palliative care.

An Exploration of the Experiences and Educational Needs of Patients With Failed Back Surgery Syndrome Receiving Spinal Cord Stimulation.

OBJECTIVE: To explore the experience of spinal cord stimulation (SCS) for patients with failed back surgery syndrome (FBSS). METHODS: Adults with FBSS referred for SCS underwent semistructured interviews at three time points: before their SCS trial, after the trial, and three months after receiving the SCS implant. The face-to-face interviews were audio recorded, transcribed verbatim and analyzed thematically. RESULTS: Twelve adults (8 male, 4 female, aged 38-80 years, pain duration 1-26 years) were recruited. Six themes were identified; 1) What should I expect? 2) Varied outcomes, 3) Understanding pain and this new treatment, 4) Experiences of the SCS journey, 5) Getting used to the device, and 6) Finding out what I need to know. Participants' expectations were varied and the procedures were broadly viewed as minor surgery. Participants' expectations about SCS were not limited to pain relief and included reductions in medication, better sleep, and increased physical activity. Participants' understanding of pain and how SCS purports to work was limited. Throughout the process, practical challenges were identified such as the surgical wound management and battery recharging. Participants received information from multiple sources and identified a range of key information needs including a quick-start guide on how to operate the device and a list of dos and don'ts. CONCLUSIONS: Overall, participants' understanding of SCS was limited. The value participants placed on understanding of the process varied markedly. A list of practical informational needs has been identified. Bespoke, user-friendly, informational tools should be developed from this list to enhance the patient experience of SCS.

Pain Reconceptualisation after Pain Neurophysiology Education in Adults with Chronic Low Back Pain: A Qualitative Study.

Pain neurophysiology education (PNE) is an educational intervention for patients with chronic pain. PNE purports to assist patients to reconceptualise their pain away from the biomedical model towards a more biopsychosocial understanding by explaining pain biology. This study aimed to explore the extent, and nature, of patients' reconceptualisation of their chronic low back pain (CLBP) following PNE. Eleven adults with CLBP underwent semistructured interviews before and three weeks after receiving PNE. Interviews were transcribed verbatim and thematically analysed in a framework approach using four a priori themes identified from our previous research: (1) degrees of reconceptualisation, (2) personal relevance, (3) importance of prior beliefs, and (4) perceived benefit of PNE. We observed varying degrees of reconceptualisation from zero to almost complete, with most participants showing partial reconceptualisation. Personal relevance of the information to participants and their prior beliefs were associated with the degree of benefit they perceived from PNE. Where benefits were found, they manifested as improved understanding, coping, and function. Findings map closely to our previous studies in more disparate chronic pain groups. The phenomenon of reconceptualisation is applicable to CLBP and the sufficiency of the themes from our previous studies increases confidence in the certainty of the findings.

The role of pain in pulmonary rehabilitation: a qualitative study.

INTRODUCTION: One third of individuals with chronic obstructive pulmonary disease (COPD) report pain. To help inform a COPD-specific pain intervention, we explored the views of health care providers (HCPs) and individuals with COPD on pain during pulmonary rehabilitation (PR). METHODS: This is a qualitative study using inductive thematic analysis. Eighteen HCPs familiar with PR and 19 patients enrolled in PR participated in semi-structured interviews. Demographic data were recorded, and the patients completed the Brief Pain Inventory (Short Form). RESULTS: 1) Interaction between pain and COPD: pain is a common experience in COPD, heightened by breathlessness and anxiety. 2) Pain interfering with PR: a) Communicating pain: HCPs rarely ask about pain and patients are reluctant to report it for fear of being removed from PR. b) PR is a short-term aggravator but long-term reliever: although pain limits exercise, concentration, and program adherence, PR may reduce pain by increasing muscle strength and improving coping. c) Advice and strategies for pain: some attention is given to pain management but this is often counterproductive, encouraging patients to cease exercise. 3) An intervention to manage pain: HCPs were enthusiastic about delivering a pain intervention within their knowledge and time constraints. Early group education was preferred. CONCLUSION: A pain intervention seems warranted in PR and may improve adherence and therefore clinical benefit. A pain intervention could be provided as part of PR education with HCP training.