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The last three census data highlighted that UK Bangladeshi communities have the worst health outcomes. This includes a higher risk of type two diabetes and heart diseases; both are risk factors for developing vascular dementia. However, little is known about Bangladeshi community members' understandings of dementia, including cultural myths. This paper focuses on the cultural myths, superstitions, and stigma surrounding dementia in an English Bangladeshi community from the direct experiences of people living with dementia, their caregivers, and the views of dementia service providers/stakeholders. This qualitative research was undertaken with three distinct participant groups using semistructured interviews (n = 25), who were recruited from community settings. The first and second participant groups explored the experiences of people with dementia (n = 10) and their family caregivers (n = 10). The third group examined stakeholders'/service providers' views (n = 5). Interviews were recorded digitally and transcribed verbatim. Findings were reached using an interpretive approach, emphasising the sense people make in their own lives and experiences and how they frame and understand dementia. The study revealed that participants with dementia and their caregivers have "alternative" knowledge about dementia and do not necessarily understand dementia in a Westernised scientific/biomedical context. Misconceptions about dementia and belief in various myths and superstitions can lead people to go to spiritual healers or practice traditional remedies rather than to their GPs, delaying their dementia diagnosis. This paper concludes that there is a lack of awareness among the Bangladeshi participants and a need for targeted awareness about dementia to help dispel cultural myths and combat the stigma surrounding dementia within the Bangladeshi community. [ABSTRACT FROM AUTHOR]

This paper reports findings from a national, qualitative study in England that investigated if young adult carers services are facilitating young people's transitions to adulthood, including considering a future beyond caring. Semi-structured, online interviews were conducted in 2022 with a purposive sample of managers or lead workers of eleven young adult carers services in England. We discuss the consideration given in assessments to young people's caring preferences and the availability of support to facilitate them to relinquish their role, if they so wished. The majority of young adult carers services gave young people the opportunity to express their views on this issue. Although the Care Act 2014 aimed to provide choice over caring in adulthood to young adult carers, this was not matched by the necessary service provision to facilitate their preferences. A new national carers strategy is urgently required to ensure that young people, particularly women, have a credible choice over their future lives. [ABSTRACT FROM AUTHOR]

Debates over the value and contribution of community hospitals are hampered by a lack of empirical assessment of the experience of patients using these services. This paper presents findings from a study which included a focus on patient and family‐carer experiences of community hospitals in England. We adopted a qualitative design involving nine case study hospitals. Data collection included interviews with patients (n = 60), carers (n = 28) and staff (n = 89). Through patients and carers highlighting the value of community hospitals feeling 'close to home', providing holistic and personalised care and supporting them through difficult transitions, the study confirms the importance of functional and interpersonal aspects of care, while also highlighting the importance of social and psychological aspects. These included having family, friends and the community close, maintaining social connections during periods of hospital treatment, and feeling less anonymous and anxious when attending the hospital due to the high levels of familiarity and connectedness. Although the experiences uncovered in this study were not uniformly positive, patients and carers placed a high overall value on the care provided by community hospitals, often arguing that these were distinctive when compared to their experiences of using other health and care services. The study suggests the need to weigh the full range of these dimensions of patient experience—functional, interpersonal, social and psychological—when assessing the role and contribution of community hospitals. [ABSTRACT FROM AUTHOR]

Little is known about the reason behind the underutilisation of community pharmacy (CP) for children. This study explored the experiences, barriers and recommendations of parents/carers and young people regarding their use of CP services for children. Two‐stage facilitated, structured, audio‐recorded interviews were conducted at each of four CPs in London, England, between May and November 2019 [1 month in each CP]. Parents/carers or young persons (aged 16–18 years) who visited CP for a child‐related matter were invited to participate. Interviews were transcribed verbatim. Data were analysed both quantitatively and qualitatively, using thematic analysis to identify themes. In total, 249 (58.2% of 428 eligible) customers agreed to participate and completed the two interviews. Out of these, 82.3% (205/249) reported positive experiences with the CP. The general practitioner (GP) was the preferred healthcare provider for minor ailments (44.6%,111/249), while 35.7% (89/249) would choose CP. Eighty‐two participants (33%) visited an Emergency Department in the last 12 months, with 13.4% (11/82) of them visited for cold and cough reasons. Where a child was present with parents/carer (128/249), there was a low level of interaction between children and pharmacists (13.3%, 17/128). Lack of awareness about the CP services provided for children and privacy were among the barriers identified by participants. Advertising of CP services and creating a child‐friendly environment were recommendations suggested by participants. The findings of this paper show that CP remains an underutilised health service for children by parents/carers and young persons. More work is needed to increase public awareness of the roles of CP in children's health and well‐being. [ABSTRACT FROM AUTHOR]

This paper presents findings from the evaluation of an Australian trial of self‐managed home aged care. The self‐management model was codesigned by advocacy organisation COTA Australia, consumers and service providers. The primary aim of the evaluation was to examine whether self‐management improved consumers' perceptions of their choice, control, and wellbeing. The secondary aim was to examine whether provider prior experience with self‐managed packages significantly influenced consumers' perceptions of choice, control and wellbeing, thereby confounded trial effects. A pre‐test post‐test quasi‐experimental design and mixed‐methods design were used to collect data over nine months in 2018–2019. The pre‐trial methods and findings have been published. The post‐trial evaluation replicated the pre‐trial data collection method of an online survey (n = 60) and semi‐structured telephone interviews with consumers (n = 9), family carers (n = 13), and consumers and carers jointly (n = 2), totalling 24 interviews. Semi‐structured telephone interviews were also conducted with CEOs and senior managers from each of the seven providers (n = 14). Three providers had prior experience supporting self‐management. Parametric and non‐parametric tests examined the statistical data. Qualitative data were analysed thematically and framed according to self‐determination principles and ecological systems theory. Both datasets demonstrated that consumers reported greater choice and control at post‐trial than pre‐trial. This finding was not affected by providers' prior experience with self‐management; therefore, it was not a confounding factor. Participants reported improved wellbeing in interviews, however this was not reinforced statistically. Key desirable features of self‐management included greater autonomy and control over spending, recruiting support staff and paying lower administration fees. There was no evidence of increased risks or fraud. The research limitations included a small sample size, convenience sampling with providers recruiting interview participants, no control group and differences in trial implementation. The findings support the expansion of self‐management opportunities and more comprehensive evaluations that use mixed methods. [ABSTRACT FROM AUTHOR]

This paper reports and discusses the weekly Clapping for Carers – described as 'front‐line heroes' that took place across the United Kingdom during the first national lockdown of the coronavirus pandemic. Data are drawn from a UK‐wide online survey of health and social care workers, completed in May to July 2020. The survey received 3,425 responses of which 2,541 were analysed; free‐text comments were categorised. One question asked specifically: 'Do you think the "Clap for Carers" was a helpful response from the public?', and 815 comments were provided. Responses were extracted from these 815 free‐text comments and categorised as follows: unequivocally Yes, predominantly Yes, mixed feelings, predominantly No and unequivocally No. Most comments revealed mixed feelings about the helpfulness of Clapping with only a minority being entirely supportive. The free‐text comments offer some explanations for these views with many feeling that Clapping distracted from the severity of the pandemic and the inadequate resources. The free‐text comments reveal workforce concerns that the support demonstrated for the frontline workforce in Clapping might be transitory and that it may not translate into workforce improvements and political commitment to further funding of health and social care. Some saw the value of Clapping as illustrative of community cohesion. There was little mention of Clapping for heroes, and where it was the notion of heroism was rejected. The demonstration of public support in Clapping for Carers may have directly benefitted the public, but only indirectly the workforce. Future recruitment data may help discern if public support has translated into a desire to join the workforce. [ABSTRACT FROM AUTHOR]

Carers of people with dementia can experience reduced health and well‐being, but little is known about how best to support them. There is some evidence to suggest that case management may improve outcomes for carers but less evidence about the features of case management services that can effectively support carers of people with dementia. Admiral Nursing operates a case management approach staffed by specialist nurses and is the only service of its kind in the United Kingdom dedicated to helping people with dementia and their carers. This paper reports qualitative findings from a mixed methods study of Admiral Nursing. For the qualitative strand of the project, data were collected in focus groups and in‐depth interviews with carers of people with dementia (n = 35) and analysed thematically using the framework approach. The aim of this analysis was to understand differences between the experiences of the carers in our sample with and without Admiral Nursing, applying Freeman's model of continuity of care (Freeman et al., Continuity of care, 2000). Participants who had received Admiral Nursing were recruited from two geographical locations and carers without experience of this service were recruited from two different areas. We found that carers in our sample felt 'supported' in circumstances where they received an ongoing service from an Admiral Nurse or other professional with expertise in dementia who was able to develop a meaningful relationship with them over time. We conclude that ongoing support, expertise in dementia and a meaningful relationship are key features of relationship continuity common in carers' reports of feeling supported. Specialist nurses are well placed to provide this continuity. [ABSTRACT FROM AUTHOR]

The aim of this paper was to understand the needs of family caregivers and professionals supporting people living with dementia with eating and drinking difficulties towards the end of life and the strategies they use to overcome them. A total of 41 semi‐structured interviews with family caregivers (n = 21) and professionals (n = 20) were conducted in London and surrounding areas of England. Interviews were audio‐recorded and transcribed verbatim. Four themes were identified: caregivers accessing and seeking help, perceived priorities of care, professionals' supportiveness and educational role, and strategies. Caregivers often struggle as they are not aware of the eating and drinking difficulties associated with dementia's progression. Care can change over time with families prioritising a person's comfort towards the end of life rather than ensuring a particular level of nutrition. Mutual support is required by both professionals and caregivers to enhance the care of the person living with dementia. Cognitive difficulties are often behind initial eating and drinking challenges in dementia, whereas physical challenges take over towards the later stages. Flexibility and creativity are key to adapting to changing needs. There is a need to raise awareness of the eating and drinking challenges associated with the progression of dementia. Professionals can help caregivers embark on the transition towards focussing on comfort and enjoyment of eating and drinking near the end of life rather than nutrition. This is particularly relevant for those caring for a relative living at home. Caregivers' input is needed to tailor professionals' recommendations. [ABSTRACT FROM AUTHOR]

This paper reports on qualitative data from the Actifcare study investigating experiences, attitudes, barriers and facilitators concerning access to and use of formal care. A total of 85 semi‐structured in‐depth interviews were conducted in eight European countries. Results were analysed with a deductive content analysis, first within country and then integrated in a cross‐national analysis. Overall, analysis of the in‐depth interviews revealed two major themes with five subcategories. The results can be summarised in an optimal pathway for access to dementia care. This pathway includes fixed factors such as disease‐related factors and system‐related factors. In addition there are personal factors that are subject to change such as attitudes towards care. An important finding consisted of the necessity of having sufficient information about the disease and available care and having a key contact person to guide you through the process of finding suitable care while monitoring your needs. In addition, it is important to involve your social network as they can take on care‐giving tasks. It is helpful to have a diagnosis (in most countries). Concerning decision‐making, the person closest to the person with dementia is in the majority of cases the one who makes the ultimate decision to access and use services and he/she should therefore be supported in this process. These results provide insight into the factors that influence the pathway to formal care use and help professionals to enhance access to formal dementia care by focusing on factors that can be modified. [ABSTRACT FROM AUTHOR]

It is well documented that Health care assistants (HCAs) provide the most hands‐on care to residents in aged care facilities, and play a critical role in the provision of care to dementia residents. Over the last 25 years, a philosophy of person‐centred care has become the preferred approach to care and this has meant that HCAs are encouraged to get to know the resident very well. This paper reports the experiences of HCAs in caring for people at end‐of‐life, identifies the skills required for their work and examines the education provided against these skills. Semi‐structured interviews were conducted in 49 facilities (n = 34) across New Zealand and data analysed thematically, with the aim of critically examining the adequacy of education for health care assistants which meets their needs within a person‐centred environment. The results confirm that the skills include traditional tasks of care (showering, feeding, toileting, and dressing) but the increasingly important communication and de‐escalation skills, both verbal and non‐verbal, have become central to their care skills. Education provided has not sufficiently shifted focus to include these more complex skills. Provision of educations that acknowledges the increased complexities of their role needs to be provided. As well, facilities need to be challenged to reconsider the HCA's position in the facility care tem. [ABSTRACT FROM AUTHOR]

Stroke is the UK's fourth highest cause of death and an estimated 300,000 people in England are living with related disability. This paper explores the six‐month review (6MR), a policy initiative that aimed to ameliorate unmet need. A multiple case study approach underpinned by critical realism was used to elicit the views of patients, carers, providers and commissioners across three sites using interviews, observations and documentation. Forty‐six patients (age range 28–91 years), 30 carers and 28 professionals were interviewed between December 2015 and October 2016. Twenty‐nine reviews were observed. Data was analysed thematically across sites. 6MRs carried out by stroke nurse specialists (SNSs) were found to be more medically orientated than those completed by a Stroke Association (SA) co‐ordinator who focused on social issues. Reviewers regarded reviews primarily as an opportunity to address unmet need and signpost to further services. Patients responded in three different ways: proactive and engaged, reflected an active orientation to recovery and self‐management; proactive and self‐managing on their own terms, encompassed patients who were striving for independence but took their own approach sometimes at odds with that of clinicians; and passive orientation, whereby patients did not engage in rehabilitation or self‐management. Patients identified different priorities to those of reviewers, particularly those with other long‐term conditions and this appeared to contribute to the dissatisfaction that some expressed. In conclusion, there was little evidence that the 6MR played a key role in recovery. Locally defined outcomes for the 6MR reflecting national policy were not substantiated by the findings. Our findings suggest that the 6MR should review therapy goals and facilitate patient‐led goals. Reviewers should be allowed the freedom to individualise the process rather than adhering to a rigid framework dictated by national policy and local protocols. [ABSTRACT FROM AUTHOR]

The review discussed in this paper provides a unique synthesis of evidence and knowledge about carers. The authors adopted a scoping review methodology drawing on a wide range of material from many different sources published between 2000 and 2016. It offers key insights into what we know and how we know it; reinforces and expands evidence about carers' profile; shows knowledge is uneven, e.g. much is known about working carers, young carers and carers of people with dementia but far less is about older carers or caring for someone with multiple needs. A striking feature of much research is a focus on caring as a set of tasks, rather than a dimension of an, often dyadic, relationship. While there is substantive evidence about the negative impact of caring, the review suggests that links between caring and carer outcomes are neither linear nor inevitable and vary in depth and nature. A reliance on cross‐sectional studies using standardised measures is a major weakness of existing research: this approach fails to capture the multidimensionality of the caring role, and the lived experience of the carer. Although research relating to formal support suggests that specific interventions for particular groups of carers may be effective, overall the evidence base is weak. There is a tension between cost‐effectiveness and what is valued by carers. Developing robust evaluative models that accommodate this tension, and take account of the dyadic context of caring is a critical challenge. A fundamental deficit of carer‐related research is its location in one of two, largely separate, paradigmatic frameworks: the "Gatherers and Evaluators" and the "Conceptualisers and Theorisers." The authors suggest that developing an integrated paradigm that draws on the strengths and methods of existing paradigms, has considerable potential to generate new knowledge and new evidence and extend understanding of care and caring. [ABSTRACT FROM AUTHOR]

Although grandparents play a significant role in caring for their grandchildren in Asian culture, few studies have examined how grandparents from skipped families care for their children in rural areas. This study aims to explore grandparents' perceptions and experiences in providing care for their grandchildren in rural Thailand, where support is limited. Utilizing a qualitative approach, in-depth interviews and focus group discussions were conducted with 20 grandparents caring for children under 5 years old. The coding of interview transcripts was followed by thematic analysis. In this study, the participants shared their experiences about raising and caring for their grandchildren in rural areas. "We were held in bondage" is the overarching theme. Interviews revealed two main themes: (1) feeling of burden, divided into the following three subthemes: lack of parenting skills, worries regarding grandchildren's health and well-being, and emotional stress and financial/physical strain; (2) maintaining family bonds, which were further divided into the following subthemes: supporting adult children, being parents again, and becoming more loving and bonded. According to the findings, healthcare providers may be able to anticipate the needs of grandparents in rural areas and provide support, culturally relevant interventions, and training programs for grandparents to care for their grandchildren. Further research is essential to explore the dynamics of family bonding and responsibilities in Thai families and to develop interventions supporting these families. [ABSTRACT FROM AUTHOR]

Home care (HC) is recommended for older adults who want to live at home as long as possible despite life-limiting conditions. It is more convenient and cost-effective than institutionalization and hospitalization. However, HC for older adults in Iran faces many challenges. The purpose of this study was to explore the perspectives of different stakeholders involved in HC for older adults about their experiences and suggestions for HC improvement. This qualitative study was conducted based on the explorative content analysis approach between 2021 and 2022 in Tabriz, Iran. The participants were selected using the purposeful sampling method, and the data were collected through in-depth semistructured personal interviews. A total of 27 individuals who participated in individual interviews were family members, HC workers (including nurses and unqualified paid caregivers), heads of counseling and nursing care at home centers, and experts who had clinical or research experience in the field of geriatric care. Collected data were categorized into three main themes: defects in home care governance, concern about the efficiency of home care, and caregivers' job security concerns. These themes reflected the problems of HC, such as conflicts between multiple trustees, lack of evaluation and monitoring, inadequate competence and financial barriers of families and caregivers, and poor integration and coordination of services. Therefore, it is recommended to develop a national model for HC for Iranian older adults and allocation of different financial resources for HC, implementing quality improvement and evaluation tools, enhancing the training of caregivers, providing them with adequate compensation and benefits, and ensuring the safety and quality of services. These findings can inform the policymakers and planners of care services about the needs and challenges of this population and facilitate the collaboration among different stakeholders to provide better HC for older adults. [ABSTRACT FROM AUTHOR]

Purpose. To examine psychosocial and well-being concerns throughout the cancer experience, from prediagnosis to survivorship. Whilst most oncology research focuses on patients, the role and experiences of families and caregivers are increasingly recognised as a core component of health service delivery. Moreover, research suggests that geography is an important consideration, with evidence of rural inequities in health service provision and access. Aims. (i) To examine the unique patient and caregiver experiences of rural people in three rural cancer treatment centres in New South Wales (NSW) and (ii) to examine the barriers to rural patients and caregivers accessing psycho-oncological support in NSW. Methods. A convergent parallel mixed-method evaluation of the psychosocial experiences of rural patients and caregivers accessing cancer services through three health services in rural NSW was undertaken (N = 125). Measures of psychological distress as well as quantitative and qualitative barriers data were collected. Results. Approximately, one-third of the participants reported moderate to severe distress. Patients and caregivers reported systemic, intrapersonal, interpersonal, and pandemic-specific barriers in accessing quality psychosocial healthcare. Conclusions. These results suggest that cancer patients and caregivers in rural NSW may experience elevated levels of psychological distress and barriers in accessing psychosocial care. The combination of high psychological need for patients and caregivers with reduced availability of psychosocial support services has substantial implications for psychological wellbeing and service provision. Underdetection of psychosocial need and a lack of support services pose a significant challenge for rural people with cancer and for those who care for them; this must be an urgent priority for quality improvement and equitable healthcare provision. [ABSTRACT FROM AUTHOR]

Taking care of people with dementia is stressful for informal caregivers. Respite care can provide a break for them. But it is often underused, and its acceptability can be low in China. One reason is that it fails to meet their needs. This study aimed to explore the preference of caregivers of people with dementia for respite care services. A discrete choice experiment was used. Attributes and levels of respite care were informed by a literature review and expert consultations. A fractional factorial design was used to reduce the number of choice sets. A questionnaire survey was conducted in Tianjin, China. A mixed logit model was used to compute coefficients for attributes and levels. Respite care packages differed in five attributes, which were content, provider, duration, frequency, and cost. 322 caregivers completed valid discrete choice experiment questionnaires. All five attributes were statistically significant. Two most preferred attributes were "providers" (coefficient 1.297, p < 0.001) and "frequency" (coefficient 1.169, p < 0.001). Caregivers prefer highly qualified service providers and frequent respite care. The desirable respite care for caregivers would be assistance with personal care for people with dementia which was provided by an experienced worker with attitudes of understanding and respect towards people with dementia more than 3 times per week regularly and more than 4 h every time with a lower cost. This study offered new information on Chinese dementia caregivers' preferences for respite care. Policymakers should pay attention to the frequency and quality of providers when designing respite care to improve service uptake and ultimately lighten the burden on caregivers of people with dementia. [ABSTRACT FROM AUTHOR]

Short breaks help maintain caring relationships, enabling people to remain living in their own homes and contributing significant economic benefit to public services. However, relatively little is known about the added social value generated by community-based short breaks. To address this evidence gap, we explored the feasibility of using a social return on investment (SROI) evaluation to explore a day support service in North Wales for people living with dementia and their unpaid carers. Following good practice for evaluating complex interventions, we developed a logic model based on the literature and interviews to understand the mechanisms and outcomes of the day support service. Using questionnaires, we quantified outcomes for the current service cohort, which included people living with dementia, unpaid carers, and paid companions. Seven people living with dementia, three unpaid carers, and four companions completed questionnaires. By following the SROI analysis approach, three key learning points were identified. The first was around ways to capture outcomes from all stakeholder subgroups expected to experience material change. The second concerned the importance of collecting longitudinal data. This included the need to consider how to adapt the SROI method to work with small populations. The third concerned how to value "maintenance" of wellbeing as well as improved wellbeing. [ABSTRACT FROM AUTHOR]

This study investigated the trajectory patterns of activities of daily living (ADLs) and cognitive function among older urban Chinese adults with disabilities and their influence on their family caregivers' (i.e., spouse and adult children) positive caregiving experiences. Data were derived from the three-wave longitudinal panel study titled "Longitudinal Study on Family Caregivers for Frail Older Adults Aged 75 or Above in Shanghai." A total of 251 older adults and their spouse/adult child caregivers participated in the 2010, 2013, and 2016 waves and were included in the final analytic sample. Growth curve modeling was applied to examine the proposed model. The findings suggest that ADLs and cognitive function trajectories declined over six years. Changes were predicted based on the older adults' age and education levels. In 2016, the change rate of cognitive function trajectory was associated with self-affirmation and life enrichment. Neither the initial status (intercept) nor the change rates (slope) of the ADLs' trajectory were associated with the two dimensions of positive caregiving experiences. This study extended the stress process model by demonstrating the trajectory patterns of stressors and their influence on positive caregiving experiences. Change rates in older adults' cognitive function were key risk factors for positive caregiving experiences. This finding has important implications for family-based care systems in China. [ABSTRACT FROM AUTHOR]

Family caregivers' sense of security benefits older adults who receive home care. Advance care planning (ACP) is reported to affect family caregivers' experience positively, but it might differ depending on family caregivers' kin relationships with the older adults. This study aimed to investigate whether ACP for older adults in home care settings is associated with family caregivers' sense of security and whether such an association depends on the family caregivers' status as spouses or adult children. Clarifying this association may offer practical support for implementing ACP while maintaining family caregivers' sense of security. This study was part of a prospective cohort study in Japan. The participants were older adults who used home-visit nursing services, their family caregivers, and the nurses who cared for them, recruited through the professional associations of home care nurses across Japan. Family caregivers answered a sense of security questionnaire, and the nurses were asked whether ACP was conducted. Data were collected three times from nurses and twice from family caregivers over a three-month period from August 2019 to June 2020. Multivariate logistic regression analyses were performed to examine the association between ACP implementation and positive changes in the sense of security scores after three months. Data from 169 cases were analyzed; 28.1% of the family caregivers were men and 55.6% were spouses. ACP was performed in 53.8% of the cases. The multivariate analysis showed an interactive effect between ACP implementation and family caregivers' kin relationships. For spouses, ACP was significantly associated with a positive change in their sense of security. For adult children, such an association was not found. Thus, ACP might have a positive effect on caregiving spouses' sense of security. Adult child caregivers, who often have multiple responsibilities and have difficulties facing their parents' physical decline, may need support in addition to ACP. [ABSTRACT FROM AUTHOR]

We developed a pandemic telephone outreach protocol to identify risk for social isolation, health destabilization, medication issues, inadequate services and supports, and caregiver stress among older adults at high risk of destabilization. Screening, conducted between April 1, 2020, and May 8, 2020, was targeted to those who had previously been screened as frail or who were identified as vulnerable by their family physician. This study describes the implementation and results of this risk screening protocol and describes patient, caregiver, and health professional perceptions of this outreach initiative. Mixed methods included satisfaction surveys and interviews completed by patients/caregivers (N = 300 and N = 26, respectively) and health professionals (N = 18 and N = 9, respectively). A medical record audit collected information on patient characteristics and screening outcomes. A total of 335 patients were screened in the early weeks of the pandemic, of whom 23% were identified with at least one risk factor, most commonly related to the potential for health destabilization and medication risk. Follow-up referrals were made most frequently to physicians, a pharmacist, and a social worker. The outreach calls were very well received by patients and caregivers who described feeling cared for and valued at a time when they were socially isolated and lonely. The outreach calls provided access to trusted COVID-19 information and reassurance that health care was still available. The majority of health professionals (>86%) were "very" or "extremely" satisfied with the ease of completing the screening via telephone and value for time spent; for 79% the protocol was "very" or "extremely" feasible to implement. Health professional interviews revealed that patients were unaware they could access care during the pandemic lockdown but were reassured that care was available, potential crises were averted, and they supported future implementation. Risk screening provides a significant opportunity to provide information, support, and mitigate potential risks and is an important and feasible component of pandemic planning in primary care. [ABSTRACT FROM AUTHOR]

This study aimed to evaluate the perception of family caregivers in the care process of patients with COVID-19. This study was conducted on 19 family caregivers, who were selected using purposive sampling from 2021 to 2022. Unstructured interviews were used to collect data. The data were analyzed using the Kyngas conventional content analysis approach. The analysis of data led to three main themes, including unremitting efforts in physical care in the light of traditional medicine, accuracy, and intelligence in psychological attention and trying to maintain environmental health. According to the results, family caregivers provide high levels of self-sacrificing, continuous, and comprehensive, combined with fear and loneliness care in different dimensions with little or no support from the family, community, and health team. [ABSTRACT FROM AUTHOR]

Home-based care is expanding, and we need to know more about what kind of support older adults need and how such support should be designed. One way to gain more knowledge is to study the experiences that underlie a nursing home application. However, older adults in need of nursing homes are often too weak to participate in research. Thus, this study aimed to describe the experiences of close relatives of the daily life of older adults in need of a nursing home. A qualitative approach was used, where fifteen relatives of nursing home applicants in central Sweden were interviewed using a study-specific interview guide. The interviews were analysed using thematic analysis. The findings are presented in one main theme "Being the person who manages a fragile life situation" with three underlying themes: Balancing and fulfilling expectations, striving to achieve a status quo, experiencing a breaking point, a change is inevitable, and waiting and moving into a nursing home, a period of tension. The main theme describes how the participants contributed to managing the older adults' life situation and acted as a representative in contacts with health and social care. They tried to offer support in their daily life but over time experienced a breaking point when ageing in place was no longer sustainable, resulting in a nursing home application. The rationale for a nursing home application was often a combination of the older adult's own wishes and the fact that their relatives felt there was a combined need for extensive care and physical proximity to staff, which cannot be provided in ordinary housing. Sometimes the decision to apply was also based on relatives no longer having the capacity to continue managing an older adult's fragile situation. [ABSTRACT FROM AUTHOR]

Qualitative meta‐synthesis is a coherent approach to answering an overarching research question by synthesising past qualitative studies so as to create new meanings from their results. We conducted a qualitative meta‐synthesis to systematically evaluate and integrate the caregiving experiences of adult children providing care for an elderly parent with cancer. The search was conducted in the databases Web of Science, PubMed, Embase, MEDLINE, Cochrane Library, Grew Literature in the Health Sciences, CNKI, WanFang Data, VIP, SINOMED and China Academic Journals as well as Chinese grey literature databases (China Academic Conference Literature Database/中国学术会议文献数据库, National Science and Technology Library) from inception to June 9, 2021. Thirteen studies were included in the final synthesis. The caregiver experiences they describe are synthesised into three primary themes: care needs, care burden and care gains, with numerous secondary themes. Besides our findings that seem to align with those from studies focused on other cultures, we have highlighted three main discoveries from the synthesis that stand out in the Chinese context: (1) many sub‐themes related to specific caregiving skills; (2) a strong expectation for health professionals to improve their communication skills with family caregivers; (3) the negative and positive influences of filial piety in caregiving experiences. Our findings can help multidisciplinary healthcare teams in China support adult children as caregivers in their emphasis on improving caregiver education and training, ways of making the most of potential care gains, and ways of easing care burdens. [ABSTRACT FROM AUTHOR]

The vast majority of older adults who are chronically ill rely on informal caregivers for support. Caregivers often require additional support to facilitate their role. To the best of our knowledge, there has yet to be a collation of caregiver‐identified priorities for support. Using existing research, this scoping review provides a comprehensive picture of what caregivers have indicated as priorities for support. Arksey and O′Malley's scoping review framework guides this review. We searched MEDLINE, CINAHL and PsycINFO databases on July 2, 2021. We selected databases based on their relevance to nursing, health and social science. Inclusion criteria were peer‐reviewed research of any design, a sample population of caregivers to older adults (>55 years), manuscripts published in English and the priorities for caregiver support identified by caregivers themselves. We screened a total of 3591 records, and 33 articles met the inclusion criteria. These studies were from geographic settings across the globe and used various quantitative, qualitative and mixed‐method study designs. In our synthesis, we quantified the identified priorities within the studies using coding and content analysis. We present the following list of caregiver‐identified priorities: (1) orientation to the caregiving role; (2) self‐care and respite; (3) adapting healthcare; (4) improved supports; (5) information needs; (6) access to resources; (7) financial assistance. Policymakers, healthcare professionals and non‐profit organisations can use evidence from this review to guide decisions when developing support services and interventions for caregivers. [ABSTRACT FROM AUTHOR]

This qualitative evaluation study examined the impact of unstructured intervention on people with depression in a community mental health centre in Hong Kong. In the intervention, service users initiated groups and designed group activities by themselves, with social workers as facilitators. Semi‐structured interviews were conducted with service users enrolled in unstructured intervention, their family members, and service providers in 2019. Overall, 32 participants were recruited through purposive sampling. The results revealed that peer interactions helped participants to feel accepted and understood. Participants also acquired experience with emotional coping strategies and practised their interpersonal skills, and by learning new skills from peers, they were able to rebuild their self‐esteem and improve their relationships with friends and family. To cater to clients' different needs and concerns, unstructured activities should be diversified. Family and social functioning should also be emphasised in the development of unstructured intervention because the generic skills and knowledge acquired from unstructured activities with peers could help to enhance family relationships, self‐confidence, and the ability to manage issues related to working and socialising. [ABSTRACT FROM AUTHOR]

Carers of people living with a disability, mental health problems, alcohol or drug dependency, chronic condition, terminal illness or who are frail due to age may experience negative caregiving impacts. Although carers' social isolation has been reported in many qualitative studies, it has largely been neglected in quantitative studies. Using data collected in the Carers NSW 2020 National Carer Survey, this large‐scale quantitative study aimed to identify the extent of Australian carers' social connectedness and what factors may be related to their social well‐being. The validated Friendship Scale was used to measure social connectedness of 5585 carers. More than half (56.2%) of these carers were socially isolated. Analysis found that a longer duration of caring, more time spent weekly caring, living with the care recipient, caring for a greater number of people, receiving no help from others, higher reported psychological distress and reporting perceived needs were all associated with greater social isolation. Identifying as female or nonbinary/gender diverse, identifying with a culturally and linguistically diverse background, and caring as a parent, former partner or young carer were also related to poorer social connectedness. Health and social services need to consider the needs of carers, identify carers who are socially isolated and provide resources to promote social connectedness. Greater attention in practice and research to focus on carers' social connectedness to address this crucial caregiving experience is required. [ABSTRACT FROM AUTHOR]

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]

Due to cultural influences, people from some ethnic minority groups expect to provide caregiving for their family members who suffer from illness. Little is known about the expectations about caregiving and the help‐seeking process among the Korean population in Canada. Thus, the purpose of this study is to examine perceptions of caregiving for people living with dementia and help‐seeking patterns among prospective Korean caregivers who anticipate becoming primary caregivers of their older relatives with dementia. An exploratory qualitative study was conducted in Montreal, Canada. In‐depth semi‐structured interviews were conducted with nine prospective Korean caregivers. The interviews were analysed using a qualitative thematic analysis. This study found four emerging themes: (1) the importance of family care; (2) the ability to find resources outside of the family; (3) the roles of Korean churches as a support system and; (4) the perceptions of service providers and health care settings. The findings of this study suggest that linguistic support services enable family caregivers to access more health and social services. Resources may be more easily accessed by Korean communities when provided through churches. [ABSTRACT FROM AUTHOR]

Black and Latinx youth are disproportionately affected by violence in the United States. Hospital‐based violence intervention programs (HVIPs) have emerged as an effective response to this epidemic; however, participation rates remain low. This study aimed to identify facilitators and barriers to recruitment and engagement amongst black and Latinx youth from the perspective of HVIP staff. Employing a phenomenological approach, a purposive sample of key informants was recruited. Focus groups and semi‐structured interviews lasting approximately 90 min were conducted with representatives (N = 12) from five HVIPs in U.S. cities across the Midwest and Northeast, making up 15% of all HVIPs in the United States. Each interview was recorded and transcribed verbatim. The research team employed rigorous content analysis of the data. Three themes and subsequent categories resulted from the analysis: (1) Interpersonal/Relational Facilitators (building rapport; connecting with youth; enhancing the teachable moment; building relational health); (2) Structural/Systemic Barriers (lack of reinforcement; difficulties connecting after discharge from the hospital; hospital workflow; institutional challenges); (3) Structural/Systemic Facilitators (embedding the HVIP; trauma‐informed practices and policies). Given the limited research on black and Latinx youth and the disproportionate rate of violent injuries amongst these groups, an evidence‐based systematic approach to engage youth is essential to promote health equity. The findings from this study suggest that there are several steps that HVIPs and hospitals can take to enhance their recruitment and engagement of youth and their families. [ABSTRACT FROM AUTHOR]

Despite evidence that stroke education is important and effective, low rates of stroke education are reported worldwide. Many stroke survivors and carers report that current stroke information does not meet their needs. The aim of the current study was to explore the perceptions of stroke survivors and carers towards stroke education in an Australian health context. A qualitative descriptive approach using focus groups was used to explore education received and preferred content, format and timing of education. Data were analysed inductively using qualitative content analysis to identify key categories, sub‐categories and an overarching theme. Fifteen stroke survivors and four carers participated. Four categories emerged: the timing of stroke education, the content of stroke education, the format of stroke education, and reactions to stroke education. Each category contained a number of sub‐categories. One overarching theme was woven through the transcripts: everyone is different and has different needs. Overall, participants generally expressed positive attitudes towards stroke education. Participants reported that education should occur at multiple timepoints and in a mixed format. All participants reported receiving stroke education in hospital, but not in the community. Stroke survivors preferred group education, while carers did not share this preference. Both stroke survivors and carers desired information about post‐stroke physical changes and computer use; however, stroke survivors desired additional information spanning a variety of areas such as motivation and driving. Tailoring of stroke education for each individual is critical to ensure that education meets the needs of stroke survivors and carers from the hospital to the community. [ABSTRACT FROM AUTHOR]

Some patients have to work hard to manage their illness. When this work outweighs capacity (the resources available to patients to undertake the illness workload and other workloads such as that of daily life), this may result in treatment burden, associated with poor health outcomes for patients. This cross‐sectional, comparative qualitative analysis uses an abductive approach to identify, characterise and explain treatment burden in chronic obstructive pulmonary disease (COPD) and lung cancer. It uses complementary qualitative methods (semi‐structured interviews with patients receiving specialist care n = 19, specialist clinicians n = 5; non‐participant observation of specialist outpatient consultations in two English hospitals [11 h, 52 min] n = 41). The findings underline the importance of the diagnostic process in relation to treatment burden; whether diagnosis is experienced as a biographically disruptive shock (as with lung cancer) or is insidiously biographically erosive (as with COPD). [ABSTRACT FROM AUTHOR]

Known barriers prevent informal caregivers of a person with dementia using community services; however, there is a dearth of knowledge on how organisations can overcome these barriers. This study examined caregivers' perceptions of the barriers and facilitators of service use with regards to their membership to one Alzheimers organisation and their recommendations for improvements. In‐depth interviews were conducted with 19 informal caregivers. Thematic analysis revealed personal and organisational barriers to service use, and associated recommendations. Six recommendations were made for dementia service organisations: (a) be proactive and arrange regular scheduled meetings with clients; (b) utilise consistent, trusting, empathic support personnel who can build strong relationships with clients; (c) provide support groups; (d) tailor support; (e) ensure expert knowledge and numerous channels of information delivery to clients, the general public and health professionals and (f) actively promote the organisation and services offered. This study provides novel insights into how a community organisation can overcome client barriers to service use. In addition, the study reveals caregivers perceived value of an Alzheimers organisation, argued to be an essential service, but until now clients' perceptions of the value received have not been explored. [ABSTRACT FROM AUTHOR]

Concerns from the worldwide ageing population and evidence of poor‐quality aged care services have highlighted the need to develop innovative models of aged care which are acceptable to older people, economically sustainable and are safe. Reablement is a relatively new model for aged care that aims to support older people's desires to age independently in their usual place of residence and decrease dependency on aged care services. This qualitative evidence synthesis aimed to explore the experiences of older people and their carers (formal and informal) towards a reablement model of community aged care to ensure services are considerate of older people's needs. A systematic search was conducted across six electronic databases (Medline, Scopus, CINAHL, PsycINFO, Cochrane Library and Google Scholar) from 1990 to September 2021. Qualitative research exploring older people and their carers' experiences and perceptions of the reablement model used in community aged care services were identified. Nineteen articles were included in the synthesis following the screening of 668 abstracts and 56 full texts. Included articles were subject to quality assessment, and the data were synthesised using thematic synthesis. Three analytical themes were generated from the thematic synthesis; (i) reablement is a shift in approach to aged care, (ii) difficulties in developing tangible and meaningful reablement goals, (iii) reablement improves health and well‐being. Reablement is generally well‐received by older people and their informal carers. However, poor engagement from older people did occur when they had a poor understanding of their role in reablement and when they had not been fully consulted regarding their reablement goals. Current and future reablement services for older people should focus on ensuring an awareness of the processes and principles of reablement and collaboration between practitioner, the older person and their carer when developing goals to increase engagement. [ABSTRACT FROM AUTHOR]

Young carers (YCs) are children and adolescents who provide meaningful, regular support to a relative with a health problem. In France, only one programme exists to support them: the arts and respite care programme of the national association JADE. The aim of this study is to describe the profiles of YCs who had participated in this programme and to evaluate their expectations, opinions, and the evolution of their quality of life over the course of the programme. All YCs enrolled in the programme between 2017 and 2020 were invited to participate in the study. Upon arrival, the youths completed a self‐report questionnaire addressing their sociodemographic and family situations, their caregiving activities, their quality of life, and their expectations for the programme. At the end of each week, a questionnaire evaluating their opinion of the programme and their quality of life was completed. A hundred and seventeen children participated (average age: 12; 71.8% girls). Most YCs provided support to a parent or sibling with a chronic somatic disease. The support mainly concerned doing domestic tasks and providing emotional support for the relative and was significantly higher among adolescents. Their expectations were mainly about getting respite and meeting other young people. Their levels of satisfaction were high and aligned with their expectations. Their quality of life increased significantly. French YCs in this programme had characteristics comparable to those observed internationally. The results underline the importance of respite and the benefits such a programme can bring to YCs. [ABSTRACT FROM AUTHOR]

The COVID‐19 pandemic has greatly affected the delivery of cancer care. Due to social restrictions and reductions in health service contact, it is expected that the burdens experienced by informal carers have risen. This study provides an analysis of cancer carer's experiences and needs as a consequence of the pandemic. An online mixed method design was used. The survey included open‐ended responses to explore carer's experiences and measures of health status (EQ‐5D‐5L), Quality of Life (WHOQoL‐BREF) and impact of COVID‐19. Open‐ended responses were analysed thematically according to Miles and Huberman techniques and quantitative data were analysed descriptively. One hundred and ninety‐six cancer carers participated in the online survey. Mixed method analysis demonstrated that carers were experiencing major difficulties. Of these n = 142/72.4% experienced challenges related to anxiety and depression; 35.2% rated these problems as slight with 25% rating these as moderate and 11.2% as severe. Qualitative analysis identified significant and sustained negative impacts of the pandemic on psychological health, social isolation, finance and access to health services with carers requiring urgent information and support. Carer's challenges have deepened throughout the COVID‐19 pandemic. There is an urgent need to develop innovative ways to provide support for carers to provide palliative and supportive care at home now and during recovery from the pandemic. Due to the need for infection control meaningful development and integration of urgent digital technology might be the most feasible solution. [ABSTRACT FROM AUTHOR]

The objective of this study was to understand how participants referred to a childhood obesity intervention programme prefer to receive health information, and secondly, to determine acceptability of digital technologies such as a social media platform or IT application for programme engagement. This study includes a subset of interviews (n = 64) of a wider study of the barriers and facilitators of engagement in a multidisciplinary healthy lifestyle programme for childhood obesity, based in Taranaki, Aotearoa/New Zealand. The topics of health information and social media and/or app use were covered in 53 and 30 interviews, respectively. Participants were parents and caregivers of children and adolescents referred to the programme, and interviews were mostly conducted in family homes. Findings showed that participants consulted a range of people, places and resources for information about their health, notably the internet, health professionals, and family and friends. Participants reported using the internet to complement or supplement information from health professionals. A strong relationship with health professionals built on trust was important. Use of digital technologies such as an IT application or social media platform for engagement with the programme was generally acceptable, with the caveat that this did not replace face‐to‐face communication with their primary care provider. In conclusion, the high usage of digital sources of health information requires accurate and reliable information. Digital technologies such as IT applications or social media platforms may have a role in terms of supplementing the patient journey; however, the importance of in‐person communication and an ongoing relationship with a health professional or practice remains paramount. [ABSTRACT FROM AUTHOR]

This qualitative study sheds light on how some young carers aged between 6‐ and 16‐years experienced participation in a volunteer respite programme named Buddies for Children and Youngsters (BCY). The programme was held in Northern Denmark and was based on the knowledge that young carers need a space for respite and support through conversation. The young carers were healthy children who had experienced serious, chronic somatic or mental illness and/or death in their immediate family. Over a minimum 4‐month period, students ("buddies") from University College of Northern Denmark offered respite to young carers in the form of their preferred social or other activities. From February to August 2020, 12 semi‐structured individual interviews were conducted with young carers who had participated in the programme for at least 4 months. A thematic analysis generated four main themes: (1) A "buddy" is someone special, (2) feeling happier and less lonely, (3) Experiencing a social and personal influence, and (4) Experiencing influence on family life. Most of the young carers experienced a special relationship with their "buddy" – a relationship unlike but with some similarities to their relationships with peer friends and family, and one which gave them the opportunity for conversations about difficult topics. The time spent with the "buddy" was generally experienced as a respite space, leading to feelings of being happier and less lonely. Furthermore, for some of the young carers, the relationship influenced them socially and personally and caused their parents to pay more attention to them. The findings may increase awareness of young carers' experiences of support which can benefit future initiatives provided to this group. [ABSTRACT FROM AUTHOR]

There is a global need to understand how the quality of home care for persons living with dementia is perceived by their most frequent formal caregivers, personal support workers (PSW), especially given the expected rise in the prevalence of dementia. The aim of this study was to explore the perceptions of PSW regarding what constitutes quality home care for persons with dementia. Qualitative content analysis was undertaken to interpret semi‐structured interviews with PSW (N = 15). Study findings indicate that quality home care is perceived to be (1) person‐centered; (2) provided by PSW with dementia‐specific education and training; (3) facilitated by specific PSW experiences, abilities and characteristics; (4) enhanced by accessible information, services and education for persons with dementia and their caregivers; (5) provided by an inclusive dementia care team; and (6) facilitated by organisational supports and respect. However, findings also indicated differences in what PSW perceive as quality home care versus what they are experiencing when providing care for persons with dementia. Participants advocated for increased supports to them through ongoing dementia‐specific education and training, increased teamwork among care providers, increased wages, sufficient and qualified staffing, and increased exchange of client information. The findings highlight the importance of exploring front‐line workers' perspectives and how they can help revise current healthcare policies and inform future policy development. [ABSTRACT FROM AUTHOR]

Despite a rapid increase in people with Parkinson's disease (PD) in China, studies focusing on caregiver burden remain scarce. Challenges faced by caregivers in other Asian societies are also underexplored in the PD‐related research field. To addresses this gap, this study drew on the theory of resilience and examined the caregiving experiences of Chinese family caregivers for older people with PD. We conducted participant observation and semi‐structured interviews with 15 family caregivers of older people with PD in Shanghai in 2018. We used thematic analysis to identify key patterns of stressors and factors affecting the capacity of caregivers to address burdens. Our analysis shows that stressors faced by Chinese PD caregivers included physical limitations, psychological and emotional problems, reduction in social connections, financial burden and lack of information and knowledge. Three levels of factors—personal, social and structural—played different roles in resilience among Chinese PD caregivers. However, resilience was unevenly developed among PD caregivers across gender, kinship, residential status and generation. Our study provides novel empirical evidence about the burden on Chinese PD caregivers. It can inform policymakers and social workers as they develop a holistic understanding of promoting resilience building in this rapidly growing group. Our study also enriches cross‐cultural knowledge about factors contributing to caregivers' resilience building in Asian societies. [ABSTRACT FROM AUTHOR]

Little is known on how the pandemic has changed care home care delivery. The aim of this study was to explore the impact of COVID‐19 on care provision and visits in care homes from staff and family members' perspectives. For this purpose, we conducted a telephone‐ and zoom‐based qualitative semi‐structured interview study. Care home staff and family carers of people living with dementia (PLWD) across the UK were recruited via convenience sampling and participated via telephone or online. Participants took part in a semi‐structured remote interview. Data were collected between October and November 2020. Anonymised transcripts were analysed separately by two research team members using thematic analysis, with codes discussed and themes generated jointly, supported by research team input. 42 participants (26 family carers and 16 care home staff) took part. Five themes were generated: (a) Care home reputation and financial implications; (b) Lack of care; (c) Communication or lack thereof; (d) Visiting rights/changes based on residents' needs; (e) Deterioration of residents. With a lack of clear guidance throughout the pandemic, care homes delivered care differently with disparities in the levels and types of visiting allowed for family members. Lack of communication between care homes and family members, but also government and care homes, led to family carers feeling excluded and concerned about the well‐being of their relative. Improved communication and clear guidance for care homes and the public are required to negate the potentially damaging effects of COVID‐19 restrictions upon residents, their families and the carers who support them. [ABSTRACT FROM AUTHOR]

Family caregivers are an important source of support for older people living with dementia, especially when faced with a new diagnosis of cancer. Little is currently known about the caregiver role in facilitating treatment discussions, and the factors that underpin breast cancer treatment decision‐making in older patients. This study used a sequential explanatory mixed method approach to explore the role of family caregivers in making cancer treatment decisions for older women (aged over 70 years) with pre‐existing dementia and primary operable breast cancer. Thirteen caregivers participated in the study (13 completed a postal questionnaire; eight questionnaire respondents participated in a semi‐structured interview). Quantitative data were analysed descriptively, and the Framework Approach was used to analyse qualitative findings and identify themes. Three themes were generated: (a) Clinical interactions, information and support; (b) Treatment decision‐making processes and (c) Influences on treatment choice. These findings highlight the complexities that caregivers face when navigating cancer treatment options and their role in facilitating treatment decisions. [ABSTRACT FROM AUTHOR]

Carers of loved ones with Borderline Personality Disorder (BPD) often present to Emergency Departments (ED) during acute crisis situations. The initial contact for the carer and consumer in distress is often an emergency nurse. By gaining a greater understanding of carers (18+) perspectives on ED nursing practices when consumers with BPD are requiring crisis support, knowledge about preferred and best practice can be gained. To obtain this knowledge, four semi‐structured focus group interviews were undertaken with a purposive sample of 13 carers through existing carer networks. Transcripts were analysed thematically to identify shared experiences and perspectives across interviews. Four key themes emerged: challenges in accessing crisis support, the need for communication, stigmatising practices, and different levels of care. Findings highlight the ED is viewed as a frontline service which has the capacity to link with another specialist supports when in crisis. Despite this; Communication, confidentiality issues and stigmatising practices continue. The results of this study have implications for nursing practice in the ED, providing important insights that can potentially benefit the carer, consumer and the ED to improve the quality of care offered for people in crisis. [ABSTRACT FROM AUTHOR]

Unpaid caregivers, typically family and friends, provide significant amounts of support to people with multiple sclerosis (MS). Understanding their experiences, needs and challenges is necessary to ensure that caregivers receive the support that they require to continue in their role. Our aim was to map the current state of knowledge about unpaid caregivers of people with MS and identify gaps in knowledge to guide future research and practice. We used scoping review methodology with three major health‐related databases (MEDLINE, CINAHL, APA Psychinfo), searching in September 2019, April and October 2020 and October 2021. We selected peer‐reviewed scientific articles reporting on primary studies of unpaid caregivers of people with MS, regardless of topic or research design. We extracted information on study aim, participant characteristics, measures used and key findings to generate major themes and identify knowledge gaps. We identified 108 published studies between 1992 and 2021 that met our criteria. Studies of spousal caregivers were most common. Studies focused primarily on measurement of caregiver burden or other negative consequences of caregiving. Thirteen studies addressed positive consequences of caregiving. Sixteen studies reported actual tasks performed by caregivers and seven reported outcomes of caregiver support interventions. Attention to diversity issues that may influence caregiving experiences and outcomes was rare. Overall, knowledge of MS caregiving is limited, particularly with respect to tasks performed by caregivers that may contribute to negative outcomes, diversity issues and effective approaches to remediate caregiver burden. Without this knowledge, finding ways to better support MS caregivers will be difficult. [ABSTRACT FROM AUTHOR]

Those diagnosed with dementia and those who provide care and support often feel socially isolated with limited opportunities for social engagement, increasing the potential for loneliness and further isolation that is detrimental to social health. This study examined how a co‐designed dementia café impacted on the self‐reported social health of community dwelling people with dementia and their care partners in the North‐West of England. Semi‐structured interviews were conducted at two time periods (summer of 2019 and spring of 2020), with five people living with dementia and eight care partners. The key finding was that participating in the cafés led to a sense of belonging and purpose that was beneficial to well‐being and social health for all participants. Community‐based initiatives that provide opportunities for peer support for the person with the diagnosis and the care partner are essential so that people living with dementia may rebuild their confidence as well as retaining opportunities to socialise. [ABSTRACT FROM AUTHOR]

Promoting dementia‐friendly communities is an important strategy for improving quality of life for people with dementia and dementia‐family caregivers. The process of building dementia‐friendly communities should include all people living in the community. The objective of this study was to compare perceived dementia friendliness in the community among people with dementia, family caregivers, service providers, and the general public. In Taiwan, we surveyed 60 people with dementia, 140 family caregivers, and 200 members of the general public face to face, with 200 service providers surveyed by mail. Participants completed the Perceived Community Dementia Friendliness measure, consisting of seven subscales: care services, community members, community environment, community interactions, transportation, hospitals, and stores and organisations. This measure has acceptable convergent validity, construct validity, and internal consistency reliability for use in Taiwan. Differences in perceived dementia friendliness were examined by chi‐square tests/analysis of variance. Among the seven subscales, hospitals were rated with good dementia friendliness by 70% of people with dementia (n = 42); however, care services were rated poor by 23.3% of people with dementia (n = 14). Hospitals were also rated with good dementia friendliness by 39.2% of family caregivers (n = 54). Care services were rated as having good dementia friendliness by 43.5% of service providers (n = 87) and 47% of the general public (n = 86). Furthermore, community interactions were rated as good by small percentages of family caregivers (11.4%, n = 16), service providers (22.2%, n = 44), and the general public (30.9%, n = 58). Family caregivers, service providers, and the general public rated hospitals with the highest mean dementia‐friendliness score and community interactions with the lowest. Perceived community‐dementia friendliness among participants with dementia differed from that of participants without. People with dementia prioritised improving care services, while people without dementia rated facilitating community interactions as more vital. These differences provide vital insights into understanding the policies and administration of dementia‐friendly communities. [ABSTRACT FROM AUTHOR]

Health and social care services can enhance the community experiences of people with Alzheimer's disease and their caregivers but making decisions about service use is complex. Using a grounded theory methodology, we explored service use decision‐making in 40 spousal and adult children caregivers for people with Alzheimer's disease across the caregiving and disease trajectory. Participants' perception of their initial service interactions influenced their decision‐making process and use of services. Difficulties navigating the healthcare system and finding available services also influenced decision‐making. Caregivers make decisions to sustain care in the community that change throughout the caregiving and disease trajectory. Two key factors influence service use (a) the goals of caregiving and (b) the practicalities of accessing services. Both factors change across caregiving phases. By expanding our understanding of how caregivers make service use decisions, we can augment future practice to help caregivers access services that can better support them across the disease trajectory. [ABSTRACT FROM AUTHOR]

As the number of people living longer with life‐limiting conditions grows, so too does the number of caregivers and the complexity of the caring role. To understand more about the role and how caregivers can be supported, local and national registers have been created that collect data on caregivers. Our objective was to undertake comparative analysis of female and male adult caregiver assessments from a caregiver database created from a carers support service running in Glasgow, Scotland. Assessments were carried out over a 12‐month period (01/04/17–29/03/18). We aimed to identify the prevalence of negative consequences of caring through descriptive statistical, comparative analysis. Seven hundred and eighty‐three assessments were eligible for inclusion. In our dataset, 69% were female (n = 552), and 29% were male (n = 231). Female caregivers were more likely to be of working age but unemployed (p = 0.03) and experiencing mental ill‐health (p = 0.011). Male caregivers were more likely to be retired (p < 0.001), caring for a parent (p = 0.017) and living with heart disease (p = 0.0004), addiction issues (p = 0.013) or diabetes (p = 0.042) than female caregivers. For caregivers using this support service, female and male caregivers experienced, recognised or reported negative impacts from caring on their personal identity, social life, ability to self‐care and relationships similarly. Furthermore, a caregiver whose relationships had been negatively impacted was 13.8 times more likely (p > 0.00) to report a reduction in psychological well‐being. Sex disaggregated data are an important consideration for caregiver research due to socio‐political influences that impact caring roles and expectations. Disaggregating data by sex allow researchers to understand how the caring role differs between subsets and allow for the development of more targeted, sensitive support. [ABSTRACT FROM AUTHOR]

Measuring the quality of life in family caregivers of people in palliative care is essential to document the impact of care on the caregiver. This study aimed to adapt and validate a Latin American‐Spanish version of the QOLLTI‐F scale in family caregivers of palliative care patients. This study was conducted between May and November 2019 in Medellin, Colombia. We develop three phases: translation and semantic adaptation (n = 17), face and content validity (n = 21), construct validity, internal consistency (n = 208) and test–retest reliability (n = 35). Main family caregivers of stage‐IV cancer patients receiving palliative treatment, participated. In the translation and semantic adaptation, some items were adjusted following the caregivers' recommendations. In face validity, Fleiss' Kappa was over 0.65 for family caregivers. In content validity, Fleiss' Kappa ranged from 0.54 to 1 for experts. In construct validity, the original version seven‐factor structure did not show appropriate model fit indices. The data revealed instead a new 3‐factor structure related to (1) impact of care‐giving, (2) social and healthcare interactions and (3) meaning of life. Cronbach's alpha was 0.83 for the overall scale. Test–retest reliability was 0.87 between measurements 1 and 2. This study found that The Latin American‐Spanish version of the QOLLTI‐F scale is an understandable, useful, and relevant tool for family caregivers of people with cancer receiving palliative care. Future research is needed to confirm the factor structure identified in this study. [ABSTRACT FROM AUTHOR]

The Coronavirus disease 2019 (COVID‐19) pandemic public health and social protective measures imposed globally resulted in partial or full closure of key services and supports for services and supports for people with a disability, chronic illness or age‐related dependency. This caused huge disruption to care provision and family carers were relied upon to assume this care at home. Many family carers, including those in employment, found themselves navigating additional care responsibilities without 'usual levels' of support from family, friends, work, school, day care services, homecare and community services. The purpose of this study was to examine the impact of the COVID‐19 pandemic on family carers, their employment and care‐giving responsibilities, through the lens of the Conservation of Resources (COR) theory (Hobfoll, 1989). Adopting a qualitative research approach, 16 family carers (14 females, 2 males) who were in employment prior to the onset of or during the pandemic, participated in an in‐depth, semi‐structured telephone or online video interview between June and September 2020. Interviews lasted between 45 and 100 min, were audio‐recorded and transcribed verbatim. A thematic analysis of the interview data identified four main themes: colliding worlds; navigating unchartered waters alone; opportunity despite adversity and the relentless unknowing. Findings indicate that the onset of the pandemic resulted in the sudden loss of valued resources, which disrupted routines and caused care and work life domains to become intrinsically intertwined. Consistent with the main principles of the COR theory, adapting and transitioning to different ways of working and caring with depleted resources and supports, generated considerable stress for family carers and impacted their well‐being. The implications for employers, healthcare providers, policy makers and other key stakeholders are considered, to enable family carers to successfully reconcile work with care and protect their well‐being, as the pandemic continues to unfold and in the event of future societal crises. [ABSTRACT FROM AUTHOR]

This exploratory study aimed to gain an understanding of carer reported experiences derived specifically from persons caring for someone with a rare disease. The survey took place online on the SmartSurvey platform from November 2019 to January 2020. The facilitated workshop took place in Bangor Carnegie Library, Northern Ireland. To be eligible to participate in the online survey respondents had to be adults caring for someone with a rare disease. Fifty‐seven respondents took part, 15.8% male, 84.2% female. Thirty‐two attendees were part of the facilitated workshop. While carers reported several positive aspects of their caring role, the majority of comments highlighted challenges such as sub‐optimal interactions with healthcare professionals, insufficient (or absent) emotional, psychological and social support, lack of financial support and lack of awareness of existing support services. It is important that strategies are put in place to ensure that carers are given the time they need to care for themselves, and that awareness is raised of what support options are available for carers of people with a rare disease(s) from health and social care providers, charities or support groups. [ABSTRACT FROM AUTHOR]