Search

Background: Approximately 5.7 million people in the UK are providing informal care. Carers across all ethnic groups can experience negative impacts on their physical and mental health but some minority ethnic groups face greater challenges. Higher levels of social isolation exist among Pakistani carers compared to White British carers, yet the needs of Pakistani carers and how well support services meet these needs is less well understood. Social prescribing can help people get more control over their health care in a nonmedical way. South Asian and other ethnically diverse populations are under‐served in social prescribing and there is little evidence available on why this is the case. Aim: To explore the potential role of culturally relevant and adapted social prescribing in assisting Pakistani carers and identify the cultural and religious influences and barriers on carer health behaviours. Methods: Semi‐structured one‐to‐one interviews with Pakistani family carers (n = 27) and social prescribing stakeholders (n = 10) living in London and Sheffield, UK. Participants were recruited through voluntary and community sector organisations (VCSOs), social media, religious organisations, and word of mouth. Interview data was analysed in NVivo using reflexive thematic analysis methods. Findings: Two themes were developed; (1) Individual and community level influences: Navigating and accessing carer support within Pakistani communities, including carer identity and cultural barriers to accessing support provision, and cultural adaptation to facilitate support for Pakistani carer health and well‐being, (2) societal and structural level challenges: Accessing and providing social prescribing for Pakistani carers, including funding challenges for the provision of culturally relevant carer support, integration of primary care and social prescribing, and enhancing cultural awareness and competence in social prescribing for Pakistani carers. Conclusions: There are complexities surrounding carer identity, family dynamics, stigma, and a lack of knowledge of social prescribing within Pakistani communities. There is a need for more culturally competent support, culturally relevant education, awareness‐raising, and collaboration among primary care and VCSO's to better support Pakistani carers through social prescribing, which acknowledges and addresses the complexities. Patient and Public Contribution: The study included a patient advisory group comprised of two South Asian family carers who contributed towards all stages of the study. They provided feedback on study documents (topic guides and recruitment materials) and recruitment strategy, supported with translation of study documents and interpretation of the interview data, and helped with facilitation of our dissemination activities. [ABSTRACT FROM AUTHOR]

Aim: The aim of the study was to establish the feasibility of delivering a structured post‐diagnosis information and support program to dyads (persons living with dementia or mild cognitive impairment and family carers) in two primary care settings. Design: A two‐phase explanatory mixed‐method approach guided by the Bowen Feasibility Framework focused on acceptability, implementation, adaptation, integration and efficacy of a five‐part programme. In phase 1, the quantitative impact of the programme on the dyadic programme recipients' self‐efficacy, quality of life, dyadic relationship and volume of care was measured. In phase 2, inductive content analysis focused on nurse and dyad participant experiences of the programme. Quantitative and qualitative data were reviewed to conclude each element of feasibility. Methods: Four registered nurses working within the participating sites were recruited, trained as programme facilitators and supported to deliver the programme. Eligible dyads attending the respective primary health clinics were invited to participate in the programme and complete surveys at three time points: recruitment, post‐programme and 3‐month follow‐up. Post‐programme semi‐structured interviews were conducted with dyads and programme facilitators. Results: Twenty‐nine dyads completed the program; the majority were spousal dyads. The programme proved acceptable to the dyads with high retention and completion rates. Implementation and integration of the programme into usual practice were attributed to the motivation and capacity of the nurses as programme facilitators. Regarding programme efficacy, most dyads reported they were better prepared for the future and shared the plans they developed during the programme with family members. Conclusion: Implementing a structured information and support programme is feasible, but sustainability requires further adaptation or increased staff resources to maintain programme fidelity. Future research should consider selecting efficacy measures sensitive to the unique needs of people living with dementia and increasing follow‐up time to 6 months. Impact: This study established the feasibility of registered nurses delivering a post‐diagnosis information and support programme for people living with early‐stage dementia or mild cognitive impairment and their informal carers in primary care settings.The motivation and capacity of nurses working as programme facilitators ensured the integration of the programme into usual work, but this was not considered sustainable over time.Family carer dyads reported tangible outcomes and gained confidence in sharing their diagnosis with family and friends and asking for assistance.Findings from this study can be used to provide direction for a clinical trial investigating the effectiveness of the structured information and support programme in the primary care setting. Reporting Method: The authors have adhered to the EQUATOR STROBE Statement. Patient or Public Contribution: A public hospital memory clinic and general medical practice participated in project design, study protocol development and supported implementation. [ABSTRACT FROM AUTHOR]

Background/Objectives: The importance of family carer dementia education is highlighted in research, practice guidance, and policy. Less attention is paid to how facilitators learn and prepare for their role. This research aimed to explore and describe facilitator learning experiences within a bespoke Scottish Carers' Academy designed around a theory-guided approach called Care Empathia. A healthcare and university partnership ensured integration with services and the fusion of dementia higher education know-how with clinical practice expertise. Methods: Nineteen facilitator questionnaires were completed from two Carer Academy hubs; thirteen participated in online focus groups. Results: The questionnaire findings highlighted the learning gained from being a facilitator, observing expert facilitators in action, and listening to the testimonies of family carers. The framework analysis of the focus group data identified six themes, including safe learning approaches, the art of facilitation, emotional work, team learning, and leadership. These findings highlight the importance of facilitator preparation and the advantages of co-delivery models that combine clinical and practice education expertise. Conclusion: Facilitators need to understand how to walk the talk of theory-guided educational models, be open to reciprocity in learning, and be prepared for the emotional work of delivering trauma-informed practical dementia care education to family carers. [ABSTRACT FROM AUTHOR]

Caring for a person with dementia can negatively impact the physical, mental, and social wellbeing of an informal carer. Providing complex and challenging care often results in carer burden, stress, and distress, which can continue even when the care recipient transitions into an aged care facility. This case study aims to demonstrate that optimising carer support, knowledge, skill acquisition, and promotion of wellbeing benefits carers and those they care for across contexts. It provides a weekly account of an informal Australian carer's experience with the STrAtegies for RelaTives (START) manualised intervention program. The study used reliable change indices, standardised measures, and carer surveys to provide insights into the carer's experience of the program and outcomes during and after the therapy. The results showed reliable and clinically significant change, demonstrating an improvement in all measures. The carer's mood symptoms and their perceived burden of care decreased. The carer also reported decreased dementia symptoms in their care recipient. Both the carer and the care recipient experienced increased quality of life. These findings are consistent with recent literature on the feasibility of the START program and are aligned with the National Dementia Plan. [ABSTRACT FROM AUTHOR]

Abstract Background Increasing numbers of family carers are providing informal care in community settings. This creates a number of challenges because family carers are at risk of poor physical and psychological health outcomes, with consequences both for themselves and those for whom they provide care. General Practitioners (GPs), who play a central role in community-based care, are ideally positioned to identify, assess, and signpost carers to supports. However, there is a significant gap in the literature in respect of appropriate guidance and resources to support them in this role. Methods A scoping review was undertaken to examine clinical guidelines and recommendations for GPs to support them in their role with family carers. This involved a multidisciplinary team, in line with Arksey & O’Malley’s framework, and entailed searches of ten peer-reviewed databases and grey literature between September-November 2020. Results The searches yielded a total of 4,651 English language papers, 35 of which met the criteria for inclusion after removing duplicates, screening titles and abstracts, and performing full-text readings. Ten papers focused on resources/guidelines for GPs, twenty were research papers, three were review papers, one was a framework of quality markers for carer support, and one was an editorial. Data synthesis indicated that nine (90%) of the guidelines included some elements relating to the identification, assessment, and/or signposting of carers. Key strategies for identifying carers suggest that a whole practice approach is optimal, incorporating a role for the GP, practice staff, and for the use of appropriate supporting documentation. Important knowledge gaps were highlighted in respect of appropriate clinical assessment and evidence-based signposting pathways. Conclusion Our review addresses a significant gap in the literature by providing an important synthesis of current available evidence on clinical guidelines for GPs in supporting family carers, including strategies for identification, options for assessment and potential referral/signposting routes. However, there is a need for greater transparency of the existing evidence base as well as much more research to evaluate the effectiveness and increase the routine utilisation, of clinical guidelines in primary care.

BackgroundMost people living with dementia want to remain living in their own homes and are supported to do so by family carers. No interventions have consistently demonstrated improvements to people with dementia's life quality, functioning, or other indices of living as well as possible with dementia. We have co-produced, with health and social care professionals and family carers of people with dementia, a new intervention (NIDUS-family). To our knowledge, NIDUS-family is the first manualised intervention that can be tailored to personal goals of people living with dementia and their families and is delivered by facilitators without clinical training. The intervention utilizes components of behavioural management, carer support, psychoeducation, communication and coping skills training, enablement, and environmental adaptations, with modules selected to address dyads' selected goals. We will evaluate the effect of NIDUS-family and usual care on goal attainment, as measured by Goal Attainment Scaling (GAS) rated by family carers, compared to usual care alone at 12-month follow-up. We will also determine whether NIDUS-family and usual care is more cost-effective than usual care alone over 12 months.MethodsA randomised, two-arm, single-masked, multi-site clinical trial involving 297 people living with dementia-family carer dyads. Dyads will be randomised 2:1 to receive the NIDUS-family intervention with usual care (n = 199) or usual care alone (n = 98). The intervention group will be offered, over 1 year, via 6-8 video call or telephone sessions (or face to face if COVID-19 restrictions allow in the recruitment period) in the initial 6 months, followed by telephone follow-ups every 1-2 months to support implementation, with a trained facilitator.DiscussionIncreasing the time lived at home by people living with dementia is likely to benefit lives now and in the future. Our intervention, which we adapted to include remote delivery prior to trial commencement due to the COVID-19 pandemic, aims to address barriers to living as well and as independently as possible that distress people living with dementia, exacerbate family carer(s) stress, negatively affect relationships, lead to safety risks, and frequently precipitate avoidable moves to a care home.Trial registrationInternational Standard Randomised Controlled Trials Number ISRCTN11425138 . Registered on 7 October 2019.

Background: Increasing numbers of family carers are providing informal care in community settings. This creates a number of challenges because family carers are at risk of poor physical and psychological health outcomes, with consequences both for themselves and those for whom they provide care. General Practitioners (GPs), who play a central role in community-based care, are ideally positioned to identify, assess, and signpost carers to supports. However, there is a significant gap in the literature in respect of appropriate guidance and resources to support them in this role. Methods: A scoping review was undertaken to examine clinical guidelines and recommendations for GPs to support them in their role with family carers. This involved a multidisciplinary team, in line with Arksey & O'Malley's framework, and entailed searches of ten peer-reviewed databases and grey literature between September-November 2020. Results: The searches yielded a total of 4,651 English language papers, 35 of which met the criteria for inclusion after removing duplicates, screening titles and abstracts, and performing full-text readings. Ten papers focused on resources/guidelines for GPs, twenty were research papers, three were review papers, one was a framework of quality markers for carer support, and one was an editorial. Data synthesis indicated that nine (90%) of the guidelines included some elements relating to the identification, assessment, and/or signposting of carers. Key strategies for identifying carers suggest that a whole practice approach is optimal, incorporating a role for the GP, practice staff, and for the use of appropriate supporting documentation. Important knowledge gaps were highlighted in respect of appropriate clinical assessment and evidence-based signposting pathways. Conclusion: Our review addresses a significant gap in the literature by providing an important synthesis of current available evidence on clinical guidelines for GPs in supporting family carers, including strategies for identification, options for assessment and potential referral/signposting routes. However, there is a need for greater transparency of the existing evidence base as well as much more research to evaluate the effectiveness and increase the routine utilisation, of clinical guidelines in primary care. [ABSTRACT FROM AUTHOR]

Copyright of Global Qualitative Nursing Research is the property of Sage Publications Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

A tragedy occurred recently in Hong Kong as the attack of COVID-19 rocked the whole society. This brief note intends to call for local and international discussions about difficult cases caused by the infection control measures. Current social distancing practice requires social work practitioners to detect high-risk cases not only for those living alone but also for those living together, and to assess the risks to care. In addition, social workers should join forces with stakeholders' associations to advocate suitable and sufficient service provision in order to enhance well-being of families of children with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Background: Visiting restrictions in care homes in England and many comparable countries during the Covid-19 pandemic were extensive and prolonged. We examined how care home managers experienced, understood and responded to the national care home visiting guidance in England in developing their visiting policies. Methods: A diverse sample of 121 care home managers across England, recruited through varied sources including the NIHR ENRICH network of care homes, completed a 10-item qualitative survey. Follow-up, in-depth qualitative interviews were conducted with a purposive sub-sample of 40 managers. Data were analysed thematically using Framework, a theoretically and methodologically flexible tool for data analysis in multiple researcher teams. Findings: Some viewed the national guidance positively; as supporting the restrictive measures they felt necessary to protect residents and staff from infection, or as setting a broad policy framework while allowing local discretion. More commonly, however, managers experienced challenges. These included the guidance being issued late; the initial document and frequent, media-led updates not being user-friendly; important gaps, particularly in relation to dementia and the risks and harms associated with restrictions; guidance being unhelpfully open to interpretation while restrictive interpretations by regulators limited apparent scope for discretion; fragmented systems of local governance and poor central-local coordination; inconsistent access and quality of support from local regulators wider sources of information, advice and support that, while often valued, were experienced as uncoordinated, duplicative and sometimes confusing; and insufficient account taken of workforce challenges. Conclusions: Underlying many of the challenges experienced were structural issues, for which there have been longstanding calls for investment and strategic reform. For increasing sector resilience, these should be urgently addressed. Future guidance would also be significantly strengthened by gathering better data, supporting well-facilitated peer exchange, engaging the sector more fully and dynamically in policy-making and learning from care home managers' and staff's experiences, particularly of assessing, managing and mitigating the wider risks and harms associated with visiting restrictions. [ABSTRACT FROM AUTHOR]

This study compared discussion board involvement between family carers and non-carers in the Understanding Dementia Massive Open Online Course (UD-MOOC). A mixed methods observational cohort study of family carers and non-carers was undertaken over the February-April 2020 UD-MOOC. Discussion board engagement was measured as number of posts and replies and examined longitudinally using mixed models. Discussion topics were explored through structural topic models (STM). Subsequently, thematic analysis of STM derived-topic exemplars was conducted to contextualise these discussions. Family carers were (n = 2320) found to post (p < 0.001) and reply (p = 0.029) significantly more often than non-carers (n = 2392). Of the 32-STM derived-topics, meaningful activities (mean Δ = 0.007, 95% CrI [0.005–0.100]), personal stories of diagnosis (mean Δ = 0.007, 95% CrI [0.005–0.009]), and family history of dementia (mean Δ = 0.006, 95% CrI [0.004–0.008]) were discussed significantly more frequently by family carers compared to non-carers. These results may reflect underlying motivational differences and circumstantial relevance. Perhaps the greater engagement by family carers is related to a sense of having inadequate relevant offline social resources, where engagement in the UD-MOOC discussion boards may serve as means to share experiences with others. [ABSTRACT FROM AUTHOR]

Background : Ireland has over half a million family carers who provide care to a family member or loved one. Internationally, it is recognised that general practitioners (GPs) have a critical role to play in the identification and support of family carers, but, to date, no guidelines exist in Ireland to support GPs in this role. Aims: The aim of this study was to examine how carers are currently supported (or not) by healthcare professionals in Ireland, with a particular focus on the role of the GP. Methods: A mixed method design was used, involving a national online survey (N = 132) of family carers in Ireland and one-to-one interviews with 10 stakeholders (4 GPs; 6 carers). The quantitative data were analysed using a series of descriptive and inferential statistics; the interview data were analysed using framework analysis. Results: Sixty-one per cent of the carer sample reported experiencing psychological distress, more than two-thirds of whom (69%) reported 'rarely' or 'never' being asked about their own health and wellbeing. Sixty-one per cent also felt misunderstood in terms of the challenges they face in their caring role. Three key themes were identified from the interview data including (1) GP role ambiguity; (2) navigating informal processes and (3) changing needs along the care trajectory. Conclusions: The findings suggest important gaps in terms of the role of GPs vis-à-vis their support of family carers. GPs themselves indicated that they need both greater clarity regarding their role with family carers and more training and resources in this regard. A requirement for more streamlined communication and information provision was also highlighted by both GPs and carers. Carers reported a need for more information on the role of GPs in supporting carers as well as more support in addressing, in particular, the psychological complexities of carer identity and help seeking. [ABSTRACT FROM AUTHOR]

Objectives: This study aimed to explore carers' experiences of supporting a family member or friend with dementia through COVID-19 and experiences of hope and resilience during this time. Methods: Qualitative longitudinal research was undertaken in the UK, with 13 unpaid carers of people living with dementia who took part in two semi-structured interviews 8 weeks apart between June and October 2020. All transcripts were analysed using reflexive thematic analysis. Findings: Four themes were developed and included: COVID-19 impacted negatively upon everyday living; carer resilience: adapting to COVID-19; analysis of risk: safeguarding the person living with dementia; and thinking about the future with COVID-19. Conclusions: The results illustrated how the sudden changes which occurred during the pandemic negatively impacted on carers and people living with dementia in several ways, including additional responsibilities and taking away hope. The importance of continued formal and informal support for carers and people living with dementia during COVID-19 were highlighted. Formal services, care homes, and organisations need to be supported to implement procedures to ensure a safe environment during future lockdowns or periods of social restrictions. This will enable carers to remain visiting their family members and increase their confidence in accessing services and allowing paid carers to support their family member with dementia. These results have also illustrated the resilience of carers, who adapted to sudden changes which impacted negatively on their wellbeing and the wellbeing of the person living with dementia. [ABSTRACT FROM AUTHOR]

IntroductionThis study investigates family carers experiences of inpatient mental health care for people with dementia. A mental health inpatient admission for a person with dementia is usually considered when a person is distressed and this distress leads to behaviours that are assessed to be risky for the person or others.MethodsParticipants included seven family carers whose relative with dementia had been cared for within a mental health ward in the United Kingdom UK within the last 5 years. Interviews were used to explore the circumstances that led to the admission, expectations of mental health care, and perceptions of care during the admission and support received by family carers.ResultsParticipants described their distress at the time of admission and how the process of admission sometimes added to their distress. Carers often felt excluded from their relatives care in hospital and many felt a loss of their rights. Participants felt that the mental health admission had a negative impact on their relative with dementia. Mental health law and legislation was difficult to navigate and carers were concerned about how much knowledge and understanding of dementia staff have.DiscussionFindings suggest that family carers may benefit from targeted support during their relatives admission. Mental health wards could do more to recognise the expertise in care and knowledge of the person with dementia of family carers and involve them in planning care. More research is needed to explore the experiences and outcomes of people with dementia during such admissions.

Background: People with dementia sometimes refuse assistance with personal care activities such as washing or dressing. We aimed to investigate the factors associated with refusals of care in advanced dementia. Methods: A cross-sectional study using informant-based measures. Participants were people with advanced dementia and their caregivers (family carers or carehome staff) (n = 260, 130 dyads) in the UK. Mixed effects linear models were used to examine the effects of neuropsychiatric behaviours, ability with activities of daily living, professional input, co-morbidities, psychotropic medications, environment modifications, and caregiver factors including type and training status on refusals of care. The Refusal of Care Informant Scale was used, range 1-13; higher scores indicate more refusal behaviours. Results: Higher independence in activities of daily living was associated with less refusal behaviours (coefficient = -0.11, p < 0.001 [95% confidence interval -0.15, -0.07]). Higher agitation was associated with more refusal behaviours (0.11, p<0.001 [0.06, 0.15]). No other statistically significant differences were found. There was no demonstrable evidence of differences in number of refusals of care between family and care-home caregivers or between dementia-trained or "untrained caregivers. Conclusions: Results suggest refusals of care have similar prevalence regardless of caregiver type (family or care home) or dementia training status, indicating that current dementia training has no impact on refusals of care or may not be implemented as intended. Improving independence in activities of daily living and reducing agitations may help prevent refusals of care. To establish causality, future research should consider embedding these factors into interventions targeting refusal of care. [ABSTRACT FROM AUTHOR]

Objective: This narrative study explores how family members readjust to young onset dementia (YOD) being a part of their everyday life during the first four years of their family member's illness. Background: Young onset dementia affects family relationships and challenges their life situation from the onset of the illness. It is therefore important to recognise and understand the family members' supportive and resisting issues as well as their coping styles. Method: The data was collected in Finland by conducting interviews with 16 family members of people with YOD and these were repeated once a year for four years (2019 to 2022). The actant model was used to carry out the analysis. Results: Narrating the situation helps family members reconstruct their own story of their changed situation. Family members adjust their life situation at the beginning of the YOD diagnosis by retaining their daily continuity, coping, and by finding meanings. These require a recognition and an acceptance of the changes that YOD creates in relationships and daily living and may lead to a storyline that is broken, adaptive or alternative. Conclusion: When family members engage in storytelling, this can result in an increased awareness of their situation and lead them to identify opportunities and problems and solve them. This also leads to their readjustment to dementia as a part of their own personal narrative. [ABSTRACT FROM AUTHOR]

Copyright of Ethik in der Medizin is the property of Springer Nature and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Increasing evidence on men's involvement in informal, unpaid care has not transferred to the research literature around men's experiences. The aim was to explore the perspectives of men who are caring for a female partner with cancer over 1 year. Longitudinal narrative interviews (n = 22) were conducted with eight men in the UK from 2018 to 2019. Participants were aged from 32 to 76 years old, were all white British and in heterosexual relationships with women diagnosed with a range of cancer types. Interviews were transcribed and then analysed using a structural and performance approach to narrative analysis. We present, across four scenes, a process of change, transition and emotion management as the men were launched into a role that came with new responsibilities and expectations. Our study advances knowledge by highlighting the way that men perform and reflect on their negotiation with masculine discourses while supporting their partner, with implications for policy, research and practice. [ABSTRACT FROM AUTHOR]

People of South Asian (SA) origin have a higher prevalence of dementia compared with the United Kingdom (UK) population as a whole. Little is known about how family carers of SA origin perceive dementia, manage access to dementia services, and how plans and preparations are made for end‐of‐life for loved ones with dementia. This qualitative study aimed to explore the experiences of carers of people with dementia of SA origin, living in the UK. Through semi‐structured interviews, the perspective of caregivers of a person with dementia was explored from point of diagnosis to end‐of‐life preparation. Sixteen caregivers participated in face‐to‐face interviews. Four key themes are presented (i) lacking awareness at the start; (ii) living with the challenges of dementia; (iii) preparing for end‐of‐life; (iv) preferences for burial. Carers described difficulties in making sense of early symptoms and the behaviour changes they observed amongst their relatives with dementia. They described the tensions in trying to follow their religious and cultural identities of honouring the dignity and choices of the person with dementia. This study reports on the perspectives of SA carers of people with dementia, particularly exploring the end‐of‐life preparation and wishes of people with dementia in the UK. Family carers may benefit from accessing more culturally sensitive support when dementia is diagnosed, including such support when receiving formal day‐to‐day care. Importantly the findings suggest that planning and preparing to provide end‐of‐life for people with dementia should recognise and respect family and cultural contexts and religious beliefs. [ABSTRACT FROM AUTHOR]

Abstract Background Most people living with dementia want to remain living in their own homes and are supported to do so by family carers. No interventions have consistently demonstrated improvements to people with dementia’s life quality, functioning, or other indices of living as well as possible with dementia. We have co-produced, with health and social care professionals and family carers of people with dementia, a new intervention (NIDUS-family). To our knowledge, NIDUS-family is the first manualised intervention that can be tailored to personal goals of people living with dementia and their families and is delivered by facilitators without clinical training. The intervention utilizes components of behavioural management, carer support, psychoeducation, communication and coping skills training, enablement, and environmental adaptations, with modules selected to address dyads’ selected goals. We will evaluate the effect of NIDUS-family and usual care on goal attainment, as measured by Goal Attainment Scaling (GAS) rated by family carers, compared to usual care alone at 12-month follow-up. We will also determine whether NIDUS-family and usual care is more cost-effective than usual care alone over 12 months. Methods A randomised, two-arm, single-masked, multi-site clinical trial involving 297 people living with dementia-family carer dyads. Dyads will be randomised 2:1 to receive the NIDUS-family intervention with usual care (n = 199) or usual care alone (n = 98). The intervention group will be offered, over 1 year, via 6–8 video call or telephone sessions (or face to face if COVID-19 restrictions allow in the recruitment period) in the initial 6 months, followed by telephone follow-ups every 1–2 months to support implementation, with a trained facilitator. Discussion Increasing the time lived at home by people living with dementia is likely to benefit lives now and in the future. Our intervention, which we adapted to include remote delivery prior to trial commencement due to the COVID-19 pandemic, aims to address barriers to living as well and as independently as possible that distress people living with dementia, exacerbate family carer(s) stress, negatively affect relationships, lead to safety risks, and frequently precipitate avoidable moves to a care home. Trial registration International Standard Randomised Controlled Trials Number ISRCTN11425138 . Registered on 7 October 2019

Abstract Background Adult children are often key carers of frail older parents providing care for a long period of time in different care contexts. However, research concerning adult children’s caregiving experiences, from providing home-based care to facing the death of a parent in a nursing home is sparse. Thus, the aim was to explore the transition from living at home to moving into and living in a nursing home and the time after death from the perspective of next of kin to an older person. Methods A qualitative design using individual interviews with 15 adult children of older persons. The text was analysed using inductive content analysis. Results One main category was identified, until death do us part. With three generic categories, living at home, living at a nursing home and time after death, and eight sub-categories. The results describe the transition when an older person lives at home and moves into and lives in a nursing home and the time after death from the perspective of next of kin. Conclusion This study highlights many examples of tasks that adult children provide over a long period of time and in different care contexts since they felt that professional care was unable to provide safe and secure care for their older parents. It also highlights the importance for staff to recognize the support that next of kin provide. Furthermore, the study reveal that staff do not offer the relief that they are obligated to provide, to enable next of kin coping with this strenuous transition in life. First after the parent died, there was time for relief since the worrying and the doing of practical things for the parent had stopped. Trial registration Current Controlled Trials NCT02708498 ; date of registration: 26 February 2016.

Introduction: Most studies of the Latin American immigrant experience and care for relatives living with dementia have been in the United States (US). In the United Kingdom (UK), unlike the US, most Latin Americans are first generation immigrants and are a rapidly increasing population. Therefore, we aimed to explore the UK experiences of Latin Americans caring for a relative with dementia. Methods: We purposively recruited UK-based Latin American family carers of people with dementia ensuring maximum diversity. We conducted semi-structured qualitative interviews (in English or Spanish) with 11 family carers, stopping recruiting when we reached thematic saturation. We took an inductive thematic analytic approach. Findings: Four main themes were identified: (1) Family comes first, particularly older people, leading to an obligation to care; (2) dementia as an illness that is accepted and talked about, which is regarded as positive with close networks but not wider society; (3) difficult behaviours are not the responsibility of the person with dementia, who is often conceptualised as a child; and (4) caring expectations lead to incompatibility with formal services, and a reluctance to leave people with dementia alone. Conclusions: Familial obligation is the driver for family carers and acceptance of the illness helped despite adversities. Openness to talk about dementia with close networks was distinctive and helpful, contrasting with wider society, where greater awareness of dementia is needed. Considering the person with dementia as a child did not seem to undermine personhood and enabled maintenance of compassion. The relative with dementia was a priority. There was a lack of culturally and linguistically appropriate services, thus restricting family carers' ability to fulfil other roles, such as parental. [ABSTRACT FROM AUTHOR]

Aims and Objectives: To describe essential aspects of care continuity from the perspectives of persons with complex care needs and their family carers. Background: Continuity of care is an important aspect of quality, safety and efficiency. For people with multiple chronic diseases and complex care needs, care must be experienced as connected and coherent, and consistent with medical and individual needs. The more complex the need for care, the greater the need for continuity across different competencies, services and roles. Design: A constructivist grounded theory approach was applied. Methods: Sixteen patients with one or more chronic diseases needing both health care and social care, living in their private homes, and twelve family carers, were recruited. Semi‐structured interviews were conducted and analysed with constructivist grounded theory. The COREQ checklist was followed. Results: A conceptual model of care continuity was constructed, consisting of five categories that were interconnected through the core category: time and space. Patients' and family carers' experiences of care continuity were closely related to timely personalised care delivery, where access to tailored information, regardless of who was performing a care task, was essential for mutual understanding. This required clarity in responsibilities and roles, interprofessional collaboration and achieving a trusting relationship between each link in the chain of care, over time and space. To achieve care continuity, all the identified categories were important, as they worked in synergy, not in isolation. Conclusion: Care continuity for people with complex care needs and family carers is experienced as multidimensional, with several essential aspects that work in synergy, but varies over time and depends on each person's own resources and situational and contextual circumstances. Relevance to clinical practice: The findings promote understanding of patients' and family carers' experiences of care continuity and may guide the delivery of care to people with complex care needs. [ABSTRACT FROM AUTHOR]

Copyright of Journal of Society & Social Work is the property of Journal of Society and Social Work and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Undertaking co-design with the end users of services has rapidly evolved as the best-practice approach to program design, development and implementation. Increased interest in using participatory co-design in dementia care has drawn attention to the need for evidence-informed methods for facilitating the meaningful involvement of people with dementia and their family carers in co-design activities. The aim of this paper is to describe the co-design framework used in the co-design of a dementia specialist training program for home care workers. The Promoting Independence Through quality dementia Care at Home program is a successful example of co-design methodology used across multiple project stages and with various stakeholder groups, including people living with dementia, family carers, home care workers, managers and researchers. Co-design methods were tailored to each stage, purpose, and stakeholder group, and to facilitate the involvement of people living with dementia. Findings provide unique insights into optimising input from co-design partners, including people living with dementia; the methodology, conditions and requirements for participants to co-design and implement ideas; and perspectives on the enablers and challenges of using co-design in this population. In this paper, we present a comprehensive approach for involving people living with dementia as active and equal contributors in inclusive and meaningful participatory co-design. [ABSTRACT FROM AUTHOR]

Background and objective: Caring for people with severe asthma and chronic obstructive pulmonary disease (COPD) can impair the quality of life (QoL) of the carer. We aimed to describe the QoL and needs of severe asthma and COPD carers. Methods: Carers of severe asthma (n = 89) and COPD (n = 48) completed an online cross‐sectional survey assessing QoL and carer support needs using the Short Form Health Survey 12v2 (SF‐12), the Hospital Anxiety and Depression Scale (HADS) and Carers Support Needs Assessment Tool (CSNAT) questionnaires. Results: Carers of people with severe asthma and COPD were similar in age (mean ± SD 57.78 ± 14.09 vs. 56.93 ± 12.91) and gender (65% female vs. 66%); however, they differed in caring duration (proportion caring for >10 years: 65% vs. 33%, p < 0.002). QoL was impaired in both groups, but there were no significant differences between severe asthma and COPD carers in either of the SF‐12 component scores. The HADS scores revealed no difference between groups. Compared to severe asthma carers, COPD carers had significantly greater needs for: 'having time for self' (33% vs. 13%, p = 0.006), 'equipment to help care for relative' (33% vs. 13%, p = 0.006), 'practical help in the home' (35% vs. 18%, p = 0.006) and 'getting a break from caring overnight' (21% vs. 6%, p = 0.023). Conclusion: QoL is impaired in carers of people with severe asthma to a similar degree of COPD carers and other debilitating diseases like cancer. These novel data highlight the support needs of severe asthma carers and identifies areas where tailored support is needed to reduce their substantial carer burden. Quality of life is impaired in severe asthma carers. We have shown, through a larger sample of carers using a quantitative online survey, the burden of caring for people with severe asthma. Using a validated tools to capture concepts of well‐being can be useful to reduce carer burden. See relatedEditorial [ABSTRACT FROM AUTHOR]

Dementia can negatively impact the well-being of people living with dementia and their family carers. Research suggests that music psychosocial interventions are effective, safe alternatives to pharmacological interventions for the promotion of well-being. However, evidence is limited, and research gaps remain. This study explores how a community-based group singing intervention impacts the well-being of people with early-stage dementia and their family carers. A phenomenological methodological approach was adopted. Participants engaged in a six-week group singing intervention facilitated by a music therapist in a community arts centre. Semi-structured interviews were conducted (n = 7). Interpretative Phenomenological Analysis revealed four superordinate themes: (1) Social Connection; (2) Happiness and Rejuvenation; (3) Reconnection with the Self; and (4) Supporting the Carer–Cared-for Relationship. Evidence of multidimensional enhancement of well-being, absence of adverse effects, and accessibility of this musical medium support the increased provision of community-based singing groups for these populations. [ABSTRACT FROM AUTHOR]

Abstract Background Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. Financial pressures are among the most serious concerns for many carers and the financial burden of end of life caregiving can be substantial. Methods The aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and describe how these costs represent an equity issue in palliative care. Results The financial costs of informal caregiving at the end of life can be significant and include carer time costs, out of pocket costs and employment related costs. Financial burden is associated with a range of negative outcomes for both patient and carer. Evidence suggests that the financial costs of caring are not distributed equitably. Sources of inequity are reflective of those influencing access to specialist palliative care and include diagnosis (cancer vs non-cancer), socio-economic status, gender, cultural and ethnic identity, and employment status. Effects of intersectionality and the cumulative effect of multiple risk factors are also a consideration. Conclusions Various groups of informal end of life carers are systematically disadvantaged financially. Addressing these, and other, determinants of end of life care is central to a public health approach to palliative care that fully recognises the value of carers. Further research exploring these areas of inequity in more depth and gaining a more detailed understanding of what influences financial burden is required to take the next steps towards meeting this aspiration. We will address the conclusions and recommendations we have made in this paper through the work of our recently established European Association of Palliative Care (EAPC) Taskforce on the financial costs of family caregiving.

Osamotnienie opiekunów rodzinnych osób ciężko chorych w domach w Polsce. Inspiracje z działań Fundacji Carers UK do edukacji społecznej na temat inkluzji i wsparcia opiekunówW ciągu ostatnich czterdziestu lat w Polsce byliśmy w stanie zmienić podejście do pacjentów z chorobą nowotworową i ich opiekunów rodzinnych. Od światowego ruchu hospicyjnego nauczyliśmy się opieki, tworząc własne strategie edukacji społecznej w zakresie opieki nad osobami u kresu życia. Ogólnopolski projekt: Hospicjum to też życie pomógł opiece paliatywno-hospicyjnej, poprawiając także społeczną akceptację opieki u kresu życia oraz wsparcie dla rodzin osób chorych na raka w Polsce. Sytuacja wielu osób starszych, uwięzionych w domach, szczególnie w przypadku pacjentów z demencją i ich rodzin, jest w Polsce ciągle zupełnie inna. Większość rodzin wciąż wstydzi się bycia rodziną z „problemami psychicznymi”, często izolując się od innych wokoło. Większość naszych lokalnych społeczności nie wspiera tych, którzy cierpią w domach, i tych, którzy się nimi zajmują, opiekując się nimi często przez wiele lat. Pedagodzy społeczni i pracownicy socjalni muszą odpowiedzieć na pytania dotyczące samotności i izolacji wielu opiekunów rodzinnych: jak radzić sobie z poczuciem winy, izolacji i samotności, gdy jesteś opiekunem rodzinnym dla osoby poważnie chorej w domu? Wiele praktycznych porad można zaczerpnąć z doświadczeń brytyjskiej organizacji Carers UK. Po dobrych doświadczeniach zmian w opiece nad pacjentami z chorobą nowotworową i ich rodzinami w ruchu hospicyjnym w Polsce, możemy przygotować liderów społeczności lokalnych i pracowników socjalnych do pomocy licznym „samotnym bohaterom” opieki nad chorymi w domu, aby czuli się bardziej włączani i wspierani przez nas. Możemy nauczyć się wiele od tych, którzy już opracowali narzędzia i całe strategie wspierające opiekunów rodzinnych. Badanie elementów edukacyjnych działań odnoszącej sukcesy organizacji Carers UK (www.carersuk.org) pomoże wskazać główne rozwiązania tego wyzwania społeczno-edukacyjnego w Polsce, wspomagając podejmowane już w tym zakresie działania, mające na celu zmniejszenie osamotnienia opiekunów rodzinnych osób u kresu życia w naszym kraju.

Abstract Background The McGill Quality of Life Questionnaire - Expanded (MQOL-E) and the Quality of Life in Life-Threatening Illness-Family Carer/Caregiver version (QOLLTI-F) are developed for use with patients facing the end of life and their family carers, respectively. They are also developed for possible use as companion instruments. Contemporary measurement validity theory places emphasis on response processes, i.e. what people feel and think when responding to items. Response processes may be affected when measurement instruments are translated and adapted for use in different cultures. The aim of this study was to translate and examine content validity and response processes during completion of MQOL-E and QOLLTI-F version 2 (v2) among Swedish patients with life-threatening illness and their family carers. Methods The study was conducted in two stages (I) translation and adaptation (II) examination of content validity and response processes using cognitive interviews with 15 patients and 9 family carers. Participants were recruited from the hemodialysis unit, heart clinic, lung clinic and specialized palliative care of a Swedish county hospital. Patients had life-threatening illness such as advanced heart failure, advanced chronic obstructive pulmonary disease, end-stage kidney disease or advanced cancer. Patients were outpatients, inpatients or receiving home care. Results Patients and family carers respectively believed that the items of the MQOL-E and QOLLTI-F v2 reflect relevant and important areas of their quality of life. Although some items needed more time for reflection, both instruments were considered easy to understand. Some changes were made to resolve issues of translation. Participants expressed that reflecting on their situation while answering questions was valuable and meaningful to them, and that responding was an opportunity to express feelings. Conclusions The results of response processes pertaining to the Swedish translations of both MQOL-E and QOLLTI-F v2 contribute evidence regarding content validity, linguistic equivalence and cultural appropriateness of the translated instruments. In addition, results show that the instruments may support conversations on matters of importance for quality of life between patients and/or family carers and health care professionals. Further research is needed to study the psychometric properties of Swedish translations.

Introduction: This study aimed to explore the experience of family carer groups caring for individuals with intellectual disabilities (IDs) in the community contexts of Northeastern Thailand. Materials and Methods: We applied a focused ethnography method with a purposive sampling technique to conduct 35 in-depth interviews (of 14 individuals with IDs, 12 caregiving parents and nine disability group leaders, respectively), which were audio-recorded and transcribed verbatim, then translated from Thai to English. We used content analysis to code the interviews and develop themes. To evaluate the reliability of the coding attempt, we employed data triangulation techniques. Results: Family carer groups seemed to provide benefit to people with IDs and their families by offering support related to information records, the recovery of health and occupational skills development. Conclusion: Family carer groups are an integral part of efforts to support people with IDs. Notably, these groups may facilitate the early formation of long-term parent carer plans, which can better optimise the care and health outcomes of people with IDs in Thailand. [ABSTRACT FROM AUTHOR]

Background: Adult children are often key carers of frail older parents providing care for a long period of time in different care contexts. However, research concerning adult children's caregiving experiences, from providing home-based care to facing the death of a parent in a nursing home is sparse. Thus, the aim was to explore the transition from living at home to moving into and living in a nursing home and the time after death from the perspective of next of kin to an older person.Methods: A qualitative design using individual interviews with 15 adult children of older persons. The text was analysed using inductive content analysis.Results: One main category was identified, until death do us part. With three generic categories, living at home, living at a nursing home and time after death, and eight sub-categories. The results describe the transition when an older person lives at home and moves into and lives in a nursing home and the time after death from the perspective of next of kin.Conclusion: This study highlights many examples of tasks that adult children provide over a long period of time and in different care contexts since they felt that professional care was unable to provide safe and secure care for their older parents. It also highlights the importance for staff to recognize the support that next of kin provide. Furthermore, the study reveal that staff do not offer the relief that they are obligated to provide, to enable next of kin coping with this strenuous transition in life. First after the parent died, there was time for relief since the worrying and the doing of practical things for the parent had stopped.Trial Registration: Current Controlled Trials NCT02708498 ; date of registration: 26 February 2016. [ABSTRACT FROM AUTHOR]

Copyright of Long-Term Care Nursing / Pielegniarstwo w Opiece Dlugoterminowej is the property of Termedia Publishing House and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Frontotemporal dementia (FTD) is a progressive neurodegenerative brain condition clinically characterized by marked changes in behaviour that impact the individuals' relationships and community participation, and present challenges for families. Family carers of individuals with FTD find apathy and disinhibition particularly challenging leading to high levels of stress and burden. Positive behaviour support (PBS) as a behaviour intervention framework has never been trialled in FTD. This pilot study examined the functional basis of apathetic and disinhibited behaviours in four FTD dyads and explored the acceptability of a PBS intervention. The PBS programme was provided by an occupational therapist in the participants' homes. Measures collected at baseline and post-intervention (M = 3.9 months) assessed: function of behaviours, challenging behaviours, and qualitative outcomes pertaining to the acceptability of the PBS approach. PBS was an acceptable intervention for all four dyads. "Sensory" and "tangible" were the most common functions contributing to the maintenance of behaviour changes, and aspects of apathetic and disinhibited behaviours improved following intervention. This study demonstrates the acceptability and potential benefit of a PBS programme to provide support in FTD. A more rigorous trial will be an important next step in developing improved services tailored to the needs of this unique population. [ABSTRACT FROM AUTHOR]

Copyright of Czech & Slovak Social Work / Sociální Práce / Sociálna Práca is the property of Czech & Slovak Social Work and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

This paper explores telecare manager and other 'stakeholder' perspectives on the nature, extent and impact of family and other unpaid/informal carers' involvement in the provision of telecare equipment and services for older people. Data used in the paper are derived from a larger study on telecare provision by local councils in England. The paper aims to add to the growing evidence about carers' engagement with electronic assistive technology and telecare, and considers this in the context of typologies of professionals' engagement with carers. How carers are involved in telecare provision is examined primarily from the perspectives of senior managers responsible for telecare services who responded to an online survey and/or were interviewed in 2016 as part of a wider study. The perspectives of three unpaid carers were captured in a separate strand of the main study, which comprised more detailed case study interviews within four selected councils. Thematic and comparative analysis of both qualitative and quantitative survey data revealed the varied involvements and responsibilities that carers assumed during the telecare provision process, the barriers that they needed to overcome and their integration in local council strategies. Findings are discussed in the context of Twigg and Atkin's typology of carer support. They suggest that carers are mainly perceived as 'resources' and involvement is largely taken for granted. There are instances in which carers can be seen as 'co-workers': this is mainly around responding to alerts generated by the telecare user or by monitored devices, but only in those councils that fund response services. Though some participants felt that telecare devices could replace or 'supersede' hands-on care that involved routine monitoring of health and wellbeing, it was also acknowledged that its use might also place new responsibilities on carers. Furthermore, the study found that meeting carers' own rights as 'co-clients' was little acknowledged. [ABSTRACT FROM AUTHOR]

Caring for people living with dementia during the novel coronavirus disease 2019 (COVID-19) pandemic significantly impacted the emotional, physical, and social well-being of carers. However, no study has focused on the well-being of Chinese carers of people living with dementia in New Zealand during the pandemic. This study aimed to explore the support needs of Chinese carers of people living with dementia in New Zealand during the COVID-19 pandemic. Semi-structured interviews were conducted by two bilingual and bicultural researchers. Thematic analysis was used to explore the resilience resources for Chinese carers. Twelve Chinese carers were recruited from four community organizations in New Zealand. Four themes were identified: (1) social isolation, (2) emotional loneliness, (3) ambivalent feelings of being a carer, and (4) a variety of unmet needs. The findings of our study provide new insights into the multiple support needs of Chinese carers of people living with dementia during the COVID-19 pandemic. Implications for practice include the establishment of culturally appropriate care support services and the development of tailored resilience-building interventions to address the unmet needs of Chinese carers of people living with dementia.

Despite well-established recommendations and psycho-education programmes, the health of family carers is most often impaired, which means that the support they provide is seen only in terms of burden. A phenomenological approach based on strength-based care shows that they develop skills and strategies for the well-being of their loved one, and are nurtured by a sense of hope that enables them to acquire experiential knowledge., (Copyright © 2024 Elsevier Masson SAS. All rights reserved.)

Objectives: The purpose of this study was to explore the expectations of and experiences with the public healthcare system of domestic partners of people with Parkinson`s disease (PD) in Denmark and Norway., Methods: A qualitative exploratory design was applied. The sample consisted of 14 people from Denmark ( n  = 9) and Norway ( n  = 5) living with a partner with PD. Semi-structured individual interviews were conducted between June and September 2020, digitally recorded, transcribed verbatim and analysed using a reflexive thematic analysis approach combining inductive and deductive approaches., Results: The main themes were 'negotiating systems of support' and 'balancing being both a partner and a family carer'. Partners take responsibility for the people with whom they live and attempt to fill gaps in the public healthcare system. The most frequently described needs were more information, service coordination as the illness progressed and acknowledgement of the complex role., Discussion: A recommendation for practice is recognition of the complex roles of partners to people with PD and reaching out to both regularly to determine needs. This may enhance the collaboration between partner carers, people with PD and healthcare providers, ensure sustainability of the system and optimise living with PD in the family., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Background: Around 700,000 family caregivers provide unpaid care for 900,000 people living with dementia in the United Kingdom. Few family caregivers receive support for their own psychological needs and funding for community respite services has declined. These trends are seen across Europe as demographic and budgetary pressures have intensified due to public spending cuts arising from the 2008 financial crisis and the COVID-19 pandemic. The World Health Organization has prioritized the need to expand the provision of support for caregivers and families of people with dementia by 2025. Web-based interventions have the potential for development as they require modest investment and can be accessed by family caregivers at home. Further cost benefits can be realized by adapting existing interventions with demonstrated effectiveness for new contexts. This paper reports initial findings from the CareCoach study, which is adapting Partner in Balance (PiB), a web-based coaching intervention developed in the Netherlands, for family caregivers in the United Kingdom., Objective: This study aims to work with unpaid family caregivers and staff in adapting the Dutch web-based support tool PiB to improve its acceptability and usability for use in the United Kingdom., Methods: Accelerated Experience-Based Co-Design (AEBCD) was used with caregivers, staff, and core stakeholders. Interviews, workshops, and stakeholder consultations were conducted. Data were analyzed iteratively. Recommendations for the redesign of PiB for use across the United Kingdom were adjudicated by the study Adaptation Working Party., Results: Sixteen caregivers and 17 staff took part in interviews. Thirteen caregivers and 17 staff took part in workshops. Most (n=26) participants were White, female, and retired. All except 4 caregivers (2 male and 2 female) found the PiB's offer of web-based self-help learning acceptable. Caregivers identified complexity and lack of inclusivity in some wording and video resources as problematic. The staff took a stronger perspective on the lack of inclusivity in PiB video resources. Staff and caregivers coproduced new inclusive wording and recommended creating new videos to adapt PiB for the UK context., Conclusions: AEBCD methods facilitated the engagement of caregivers and staff and advanced the adaptation of the PiB complex intervention. An important addition to the AEBCD method in this process was the work of an Adaptation Working Party, which adjudicated and agreed to new wording where this could not be established in consultation with caregivers and staff., Trial Registration: ISRCTN Registry ISRCTN12540555; https://doi.org/10.1186/ISRCTN12540555., (©Fiona Scheibl, Lizzy Boots, Ruth Eley, Christopher Fox, Fergus Gracey, Karen Harrison Dening, Jan Oyebode, Bridget Penhale, Fiona Poland, Gemma Ridel, Juniper West, Jane L Cross. Originally published in JMIR Formative Research (https://formative.jmir.org), 22.05.2024.)

Abstract Background An understanding of how to implement person-centred interventions in palliative and end of life care is lacking, particularly for supporting family carers. To address this gap, we investigated components related to successful implementation of the Carer Support Needs Assessment Tool (CSNAT) intervention, a person-centred process of carer assessment and support, using Promoting Action on Research Implementation in Health Services (PARIHS) as a theoretical framework. This study identifies how the PARIHS component of ‘facilitation’ and its interplay with the components of ‘context’ and ‘evidence’ affect implementation success. Methods MRC Framework Phase IV study to evaluate implementation of the CSNAT intervention at scale, over six months, in 36 UK palliative care services. 38 practitioners acting as internal facilitators in 35/36 services were interviewed. Field notes were collected during teleconference support sessions between the external and internal facilitators. Results Successful implementation was associated with internal facilitators’ ‘leverage’ including their positioning within services, authority to change practice, and having a team of supportive co-facilitators. Effective facilitation processes included a collaborative approach, ongoing communication, and proactive problem solving to address implementation barriers. Facilitators needed to communicate the evidence and provide legitimacy for changing practice. Contextual constraints on facilitation included having to adjust recording systems to support implementation, organisational changes, a patient-focused culture and lack of managerial support. Conclusions The CSNAT intervention requires attention to both facilitation processes and conducive organisational structures for successful implementation. These findings are likely to be applicable to any person-centred process of assessment and support within palliative care.