Perceptions of a UK Bangladeshi community on accessing dementia health and care services within the context of the English National Dementia Strategy

Health and Social Care Delivery Research (HSDR) Programme is part of the National Institute for Health and Care Research (NIHR). As such, it aims to contribute to the NIHR's mission of improving the health and wealth of the nation by funding evaluative research projects that have the potential to improve the quality, accessibility and organisation of health and social care services by providing useful outputs for decision-makers, staff, service users, academic, and public audiences. More information about the programme can be found on the NIHR website. A logic model is a visual way of showing how an activity, programme or intervention is expected to work and bring about the benefits and changes it intends to achieve. By summarising the core elements, a logic model can be used to support programme planning, implementation, and evaluation. NIHR logic models presentin a linear flow diagramthe key activities, outputs, outcomes and impacts of each funding programme as a series of logical steps.

Background: Ireland has national strategies and policies setting out the importance of integrated care and coordination of care and support between health and social care services, to enable children to get timely and appropriate care and support. Despite Government commitment to a coordinated approach, delivery of care and support to children continues to be inconsistent and fragmented. While children with complex needs are more likely to experience significant gaps and delays in the care and support they need, evidence shows that any child in need of care and support from a health or social care service is at risk of gaps and delays. The Health Information and Quality Authority (HIQA) and the Mental Health Commission (MHC) are the regulatory bodies for health and social care services, and mental health services, in Ireland. To promote and support greater integration and collaboration between health and social care services, HIQA and the MHC worked together to develop national standards for all health and social care services working with children. Throughout the standards development process, we collaborated with children and families with lived experience, and advocates and staff working in health and social care services. Methods: These evidence-based standards cover all health and social care services working with children, including healthcare, disability, mental health and children’s social services. They provide a shared framework for all services and aim to support them to work together in a coordinated and collaborative way to improve the experience and outcomes of children and families. The standards were informed by a literature review, and extensive stakeholder involvement including focus groups with 217 children, young people and families with lived experience, advocates, staff, inspectors, and policy-makers; and 130 responses to two public consultations. An Advisory Group representing key stakeholders and a Children’s Reference Group informed the standards. The Children’s Reference Group comprised of young people and family members with experience of health and social care to ensure active people involvement and engagement in design and implementation of the standards. Their input helped ensure the standards authentically reflected what children should expect from a health and social care service committed to child-centred care. Initiative: This is the first time a set of Irish national standards has been developed focused on the needs of all children across health and social care services. The standards are underpinned by the principles of a children’s rights-based approach, safety and wellbeing, responsiveness, and accountability. Presented in the child’s voice, they articulate what outcomes a child should expect and what a service needs to do to achieve these outcomes. Impact: These standards will help to drive quality, safety, consistency and coordination across health and social care services working with children, as all organisations and services will be operating to one set of consistent national standards. Although an important lever for change, we recognise that services will need tools to support implementation of the standards and we will work with the sector to identify and collaboratively develop relevant tools to support implementation of the standards in day-to-day practice.

To examine the relationship between the use of home-visit nursing services (VNS) for patients and their family caregivers' experience of interprofessional care, which is an indicator of the care process. We used data from a cross-sectional survey in Japan, 2020. Family caregivers 40-74 years old and caring for community-dwelling patients with chronic conditions were recruited. The outcome variable was family caregivers' experience, reflecting the quality of interprofessional care for patients and their caregivers. We used the Japanese version of the Caregivers' Experience Instrument (J-IEXPAC CAREGIVERS), which includes two domains: attention for the patient and attention for the caregiver. The main factor was the use of VNS, and covariates were socioeconomic factors of the caregivers and the use of other health and social care services. J-IEXPAC CAREGIVERS scores were divided into two groups by median values and analyzed by multivariate logistic regression analyses. A total of 566 caregivers were included in the analysis. The median age was 62 years old. VNS was used in 86 cases (15.2%). Logistic regression analyses revealed that the use of VNS was significantly associated with a higher total score group for J-IEXPAC CAREGIVERS (odds ratio = 3.02; 95% confidence interval 1.54-5.91). Of the J-IEXPAC CAREGIVERS domains, attention for the patient was significant. We found that the use of VNS was likely to provide a better experience among family caregivers. Our findings suggest that visiting nurses fulfill their expected role as core members of a multidisciplinary team.

Global elderly care in crisis

BackgroundIn order to plan and improve provision of comprehensive care in Huntington’s disease (HD), it is critical to understand the gaps in healthcare and social support services provided to HD patients. Research has described utilization of healthcare services in HD in Europe, however, studies systematically examining needs for healthcare services and social support are lacking. This study aims to identify the level and type of met and unmet needs for health and social care services among patients with HD, and explore associated clinical and socio-demographic factors.MethodsEighty-six patients with a clinical diagnosis of HD living in the South-Eastern region of Norway were recruited. Socio-demographic and clinical characteristics were collected. The Needs and Provision Complexity Scale (NPCS) was used to assess the patients’ needs for healthcare and social services. Functional ability and disease stage was assessed using the UHDRS Functional assessment scales. In order to investigate factors determining the level of total unmet needs and the level of unmet needs for Health and personal care and Social care and support services, multivariate logistic regression models were used.ResultsA high level of unmet needs for health and personal care and social support services were found across all five disease stages, but most marked in disease stage III. The middle phase (disease stage III) and advanced phase (disease stages IV and V) of HD increased odds of having a high level of total unmet needs by 3.5 times and 1.4 times respectively, compared with the early phase (disease stages I and II). Similar results were found for level of unmet needs in the domain Health and personal care. Higher education tended to decrease odds of high level of unmet needs in this domain (OR = 0.48) and increase odds of higher level of unmet needs in the domain of Social care and support (OR = 1.3). Patients reporting needs on their own tended to decrease odds of having unmet needs in Health and personal care (OR = 0.57).ConclusionsNeeds for healthcare and social services in patients with HD should be assessed in a systematic manner, in order to provide adequate comprehensive care during the course of disease.Electronic supplementary materialThe online version of this article (doi:10.1186/s13023-015-0324-8) contains supplementary material, which is available to authorized users.

There is a paucity of information regarding the extent and nature of caring provided by minority ethnic communities. The proportion of older people from these communities will dramatically increase in the next 20 years, which will be accompanied by increasing health and social care needs and an increased demand for carers. A qualitative, exploratory study was conducted to identify the health and social care needs of informal carers, who were caring for a dependent adult from a Bangladeshi community in South Wales, UK. This paper focuses on Bangladeshi carers' access to formal support services provided by the statutory, private and voluntary sectors to assist them with their caring responsibilities. The findings are based on data collected using face-to-face, focused interviews with 20 Bangladeshi carers. Purposive and snowball sampling were used to recruit the sample. The data were analysed using thematic content analysis. The dimensions of accessibility and equity of quality of care were drawn upon to aid understanding of the findings. Bangladeshi carers faced a number of barriers in accessing health and social service provision, which impeded uptake of these services. Additionally, there was evidence of inequity in service provision. Recommendations for improving the accessibility of health and social care services are proposed, which may assist in promoting more equitable services for carers from the Bangladeshi community.

Gambling-related harms constitute a significant public health concern, with adverse effects ranging from financial difficulties to mental health disorders. Therefore, people experiencing gambling-related harm may need different kinds of services. While previous studies have examined the prevalence and impacts of problematic gambling, less is known how individuals who gamble use social and health care services. This study examines the social and health care usage between gambling severity groups: (1) non-gambling, (2) recreational, (3) at risk and (4) problem gambling. We aim to examine whether people with risk or problematic gambling use more social and health care services compared to non-gamblers, and what increases the probability to use social and health care services with individuals in different groups. The study used data from the population-based Healthy Finland survey (N = 28,154, 49.3%). Health and social care use were measured with separate questions by asking if participants had used services in the past 12 months (yes/no). Our results show that among individuals with problem gambling, 86% had utilized health care services, and 18% social care services during the past year, which was somewhat higher than among individuals who did not gamble. Among different gambling severity groups, it seemed, that the use of health care services is less common among men, younger individuals, people with excessive alcohol use and among those with higher income. Among individuals with problem gambling and low-risk gambling, the utilization of social services was more common among those with lower income, individuals experiencing psychological distress and long-standing illnesses. These results provide new knowledge on how people with different levels of risk for gambling harm use social and health services, and support to develop social and health services in responding to gambling problems.Key messages• People who experience different levels of risk or problem gambling are already patients in health care, and we need to make sure, that gambling is recognized behind the service use.• With these results we can understand who of those experiencing gambling problems are not in health care services, and develop practices to increase help-seeking.

ABSTRACTBackgroundMany high‐income countries are seeking to adapt services to meet the needs of the growing population of children with medical complexity and their families but concerns have been raised about the quality of this care. To understand family caregivers' experiences of services and identify priorities for improvement we need to synthesise research about families' experiences of services for children with medical complexity.ObjectivesTo systematically identify and synthesise the qualitative evidence of family caregivers' experiences of health, care and education services for children with medical complexity.MethodsSystematic searches were conducted in MEDLINE, CINAHL, EMBASE, PsycINFO and ERIC from January 2011 to March 2024. Studies were assessed for methodological quality and data richness and synthesized using thematic synthesis.ResultsSeventy‐one studies met the eligibility criteria. A purposive sample of 29 studies was taken, selecting good‐quality papers with rich data. These studies described the experience of 524 family caregivers and focused mostly on hospital care and care in the home. No studies were identified that focused specifically on family caregivers' experiences of education or social care services. Most studies were from the United States and Canada. The overarching theme was ‘concern for child's safety’ with three subthemes: ‘interactions with professionals’, ‘caring for the whole family’ and ‘system organisation’.ConclusionsFamily caregivers' priority is maintaining their child's safety across all settings of care. Fragmented systems and difficulties trusting professionals exacerbate parents' stress and concern for their child's safety. To keep the child safe and well, services need to address the needs of the whole family (e.g., parental sleep and mental health, finances, housing). Future research is needed to address the gap in research on social care services and education.Patient and Public ContributionEmerging findings of the review were discussed in a 2‐h workshop with six parents of children with medical complexity. The parents inputted into the development of the analytical themes and helped to shape the findings of the review.

Latino/a cancer survivors (LCSs) and their family caregivers (FCs) experience barriers to participation. The occupational therapy literature centered on Latinos affected by cancer is limited, including the examination of cultural values such as familismo. To explore the impact of familismo on LCSs and their FCs during treatment and survivorship from the perspectives of several stakeholders. Qualitative, cross-sectional study using semistructured interviews with various stakeholders recruited via purposive sampling. A detailed audit trail and peer examination were used to enhance rigor. Thematic analysis was used to identify, analyze, and report major themes. Urban Midwestern city. Diverse stakeholders in cancer survivorship among Latino families-LCSs living in survivorship (n = 8) and FCs (n = 5)-and cancer care providers (n = 5). LCSs were primarily female breast cancer survivors (75%), and most FCs were men (60%); only 1 LCS received occupational therapy services. Providers were 2 occupational therapists and 3 social workers. Participants described familismo as facilitating the multilevel support needed for everyday participation. Despite these tight family bonds, survivors and caregivers felt emotionally distant and were disappointed when cultural expectations were not met. Familismo plays a complex and nuanced role among Latino families affected by cancer because it is a strength that many families can draw from; however, it can also create a cycle of unexpressed needs and inadequate support. Future implications include examining culturally tailored occupational therapy services that infuse prominent cultural values and embrace cultural humility. Plain-Language Summary: The occupational therapy cancer research base primarily focuses on White survivors. The profession needs to learn from diverse populations how best to support them. Focusing on Latino families affected by cancer, this study showed that familismo, which prioritizes family needs over individual needs, is a cultural value that plays out in many ways. Both survivors and caregivers were supported by many biological and chosen family members. Because of the collectivistic nature of familismo, individuals often put their family's needs before their own. Despite close family relationships, survivors and caregivers felt distant and unsupported. We provide suggestions for how to incorporate familismo in practice. As occupational therapy's role in cancer care grows, it must put diverse communities at the forefront and intentionally put effort into developing culturally tailored services. Positionality Statements: Ricardo Ramirez is a first-generation, bilingual, and Latino occupational therapist with family experience of cancer. Susan Magasi is a White occupational therapy educator and scholar with family experience of cancer. She is a qualitative methodologist and cancer health equity researcher. In this article, the term Latino/a is used to honor the chosen language of participants with this background. We recognize that terms such as Latinx are considered to be gender-neutral, however, only 4% of the community uses this term (Noe-Bustamante etal., 2024). The term survivor is used throughout this article because it reflects the language that participants used to refer to themselves.

Context: ABI can arise from many causes and is a significant issue for long-term care. Developments in health care have meant that many more people with ABI are living longer, some with complex needs arising from their brain injury. The consequences of injury are generally long-term, even lifelong. Family members of people with ABI are significant to their rehabilitation, support and care, and research has identified many of the challenges they face. Objective: This paper reports work to survey the views of family members of people with ABI to ascertain their experience of the condition and their views and experience of related health and social care services. Method: An online survey was distributed via ABI networks to family members of individuals affected by ABI. One hundred ten respondents ranked the difficulties met by their relative living with an ABI and rated the services they had encountered. A series of open questions enabled respondents to provide greater detail regarding their experience and knowledge. Findings: The key findings are that relationships between the injured and non-injured parties change, alterations to roles and responsibilities are difficult and mediated via unending and complex grief. Relatives reported poor levels of involvement in decisions regarding the provision of social and health care services, a failure to be given good, accurate information in a timely fashion and the need to ‘fight’ for virtually any service provided. Service provision, particularly post-hospital discharge, was very regularly criticized for being either entirely absent, unaware of the impact of brain injury, failing to take account of actual functioning and/or structured in ways that are not concomitant with the needs of the injured person or the relative. Lack of knowledge of the impact of ABI by non-specialist staff and services is particularly highlighted as a barrier to progress and an added burden for relatives to contend with. Social work in particular was commented upon most negatively, most often for a failure to understand the condition and needs. Valued services and professionals are noted to be humane, knowledgeable about ABI, aware of the impact ABI has on the non-injured relative and able to act as a single ‘one-stop’ focal point for service provision. Limitations: As a self-selecting cohort of respondents to an online survey the work is not necessarily generalisable to the population as a whole. The findings, however, provide important considerations for improving social and health care services for people with ABI and the key relatives involved in supporting them. Implications: Commissioners and providers of social and health care services ought to work more closely with family members of people living with ABI. Services and individual practitioners need to be more knowledgeable about the likely functional outcomes of ABI, in particular the impact of invisible impairments to cognition and executive functioning. Relatives identify the benefit of good quality, accurate information and of a knowledgeable single point of contact across time and setting. Knowledge of ABI, of neurorehabilitation and of the impact of ABI upon family members by social workers is noted to be poor and attention to this may help with people’s rehabilitation and to prevent unnecessary additional carer burden.

BackgroundHealth concerns, such as frailty and osteoporotic fractures decrease functional capacity and increase use of health and social care services in the aging population. The ability to continue living at home is dependent on functional capacity, which can be enhanced by rehabilitation.We study the effects of a 12-month home-based physiotherapy program with 12-month follow-up on duration of living at home, functional capacity, and the use of social and health care services among older persons with signs of frailty, or with a recently operated hip fracture.MethodsThis is a non-blinded, parallel group, randomized controlled trial performed in South Karelia Social and Health Care District, Finland (population 131,000). Three hundred community-dwelling older persons with signs of frailty (age ≥ 65) and 300 persons with a recent hip fracture (age ≥ 60) will be recruited. Frailty is screened by FRAIL questionnaire and verified by modified Fried’s frailty criteria. Both patient groups will be randomized separately to a physiotherapy and a usual care arm. Individualized, structured and progressive physiotherapy will be carried out for 60 min, twice a week for 12 months at the participant’s home. The primary outcome at 24 months is duration of living at home. Our hypothesis is that persons assigned to the physiotherapy arm will live at home for six months longer than those in the usual care arm. Secondary outcomes are functional capacity, frailty status, health-related quality-of-life, falls, use and costs of social and health care services, and mortality. Assessments, among others Short Physical Performance Battery, Functional Independence Measure, Mini Nutritional Assessment, and Mini-Mental State Examination will be performed at the participant’s home at baseline, 3, 6, and 12 months. Register data on the use and costs of social and health care services, and mortality will be monitored for 24 months.DiscussionOur trial will provide new knowledge on the potential of intensive, long-term home-based physiotherapy among older persons at risk for disabilities, to enhance functional capacity and thereby to postpone the need for institutional care, and diminish the use of social and health care services.Trial registrationClinicalTrials.gov Identifier: NCT02305433, Registered Nov 28, 2014.

Family and other unpaid caregivers have a foundational role in supporting the health and well-being of older adults with complex health needs and disabilities and the demands imposed on them can be significant. The availability and adequacy of support provided by family and other unpaid caregivers has profound consequences for quality and outcomes of care delivery, but they are not well-supported in treatment decisions and care planning. Given population aging, the shift of long-term services and supports from nursing homes toward community settings, and technological advances that allow patients to be served in the community with higher acuity of care, there is a pressing need to develop systems-level processes to identify, engage, and support family caregivers in systems of care. This symposium will feature 5 presentations that provide novel insight regarding family caregivers’ experience within systems of care. We focus on family caregivers to older adults living in the community and receiving home and community-based services, primary care, or Medicare skilled home health services. Individual presentations will describe 1) differences in access to services and experiences of family caregivers by under-represented minority status; 2) a framework for health systems to include family caregivers as part of health care teams; 3) family caregivers’ capacity to help during the course of Medicare-funded skilled home health care; 4) perceived communication with health professionals, using a validated measure of family caregiver capacity; and 5) the feasibility of implementing a family caregiver screening instrument in primary care.

Fragmentation in health and social care services can result in poor access to services, lack of continuity and inadequate provision for needs. A focus on integration of services are thus suggested to prevent negative consequences of fragmentation for service recipients. There are, however, few studies that explore the competence needed for integration of services in municipal health and social care organizations. This study explores which types of competence stakeholders require and how collective competence can promote service integration. This is a single-case study, and the data consist of focus group interviews and individual interviews with service recipients, family caregivers, professionals and managers. The data were analysed both inductively and deductively. The analysis resulted in four main themes: 1) Knowledge about individual life situations and organization and system, 2) investigation competence, 3) person-centred collaboration competence and 4) facilitating competence. The themes form the basis for a collective competence framework that can promote service integration. As service integration involves a high degree of interlinked activities between professionals and organizational units, a collective approach to the concept of competence is presumably applicable. When service integration competence is approached as a collective attribute of a network within and between organizational units, the organization can facilitate this competence by encouraging an active exchange of knowledge between professionals. We also argue that service integration competence increases connectivity and interdependency between professionals and organizational units, and includes service recipients and family caregivers as legitimate extra-professional parts of the collaborative network.

Unpaid family caregivers are mostly responsible for bearing the costs associated with caring for older adults with dementia. Importantly, the ongoing COVID-19 pandemic has created unforeseen challenges for many family caregivers. Specifically, the restrictions put in place to limit the spread of the coronavirus may be exacerbating the challenges faced by these caregivers as they try to navigate the system. Further, studies have shown that family caregivers who are members of a racial or ethnic minority group such as African-Americans or Hispanics face unique challenges when caring for their loved ones. Additional challenges may include socioeconomic disadvantages, health disparities, and language barriers that make it more difficult to access healthcare and social services. In this study, we examined the perspectives of African-American family caregivers of older adults on the feasibility of utilizing technology as a coping strategy (including for research participation) during the ongoing COVID-19 pandemic. The research question was: What are the perspectives of African-American family caregivers of people with dementia on the feasibility, opportunities, and challenges of technology as a means to engage family caregivers during a pandemic? In-depth one-on-one interviews were conducted with 12 African-American/black family caregivers. Thematic analysis of the qualitative data yielded the following three themes: (1) Acceptance that technology will play a greater role in the world going forward, and family caregivers need to adapt; (2) Opportunities to avoid social isolation while maintaining links with critical community resources; and (3) Challenges due to possible loss of privacy and lack of physical interactions

Background Community-based NHS and social care services offer a wide range of health and social care services, including General Practice, care homes, hospices, community pharmacies, district and community nursing, and mental health services, which provide care from birth to the end of life. However, despite being fundamental to plans for health and critical social care, community-based NHS health services are poorly understood compared to hospital-based services. A scoping exercise failed to identify any specific research examining the barriers and facilitators of community-based NHS and social care services. Objectives 1) To develop a qualitative framework using semi-structured interviews to explore the perspectives and experiences of the research staff and practitioners. 2) To explore how we can build research on community-based NHS and Social Care services using the perspectives and experiences of the research participants. 3) To make recommendations to clinicians, practitioners, policymakers, and funding organizations on how to build research in community-based NHS and Social Care Services. Methods With reference to the literature and input from the project team and key stakeholders, interviews will be conducted using a semi-structured topic guide. The interview guide will identify barriers and facilitators to researching community-based NHS health and social services. Outcomes The intended outcomes of this study could help in understanding and developing strategies to address workforce needs to increase the capacity and capability of research delivery. Further, to embed a research culture in community-based NHS and social care services by supporting collaborative work between primary, secondary, community, and social care to build research capacity and capability; reach underserved communities and increase local engagement and participation in research; and increase equality, diversity, and inclusion by adding research in community-based NHS and social care services where everyone lives.