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Background: Experiences of living with and seeking care for multimorbidity is a relatively under-researched field. By analysing experiences of people with multimorbidity, caregivers and care professionals, we can better understand the complex care needs of those with multimorbidity and identify improvements to care management. This paper reports findings from research that elicited the views of key stakeholders to inform future care practice and policy. Aim: To elicit care recipient and care provider views to understand the care needs of those living with and seeking care for multimorbidity. Method: A qualitative interview study using purposive sampling of those living with and providing care in multimorbidity. Results: Increased support to those with multimorbidity and caregivers to navigate care systems was advocated. Establishing trusting care relationships featured prominently in participants accounts. Fragmented care, inadequate coordination and poor communication between care providers, were identified as system-wide challenges. There was agreement that integrated care models were needed, which delivered personalised care, such as shared decision-making, choice in care options and accessing services, and individualised care plans. Conclusion: We found significant agreement among stakeholders on care need and management in multimorbidity. Understanding the experiences of those with multimorbidity, caregivers and care professionals, can inform future improvements in care management. [ABSTRACT FROM AUTHOR]

Background: People with post‐stroke dysphagia often require informal care from family to facilitate safe swallowing, modify food/drink or administer tube‐feeds. Previous survey studies have found dysphagia may increase family caregiver burden. However, the experiences of family members in this population have not been fully explored. Aims: To explore family members' experiences of living with a spouse with post‐stroke dysphagia. Methods & Procedures: This exploratory qualitative study used one‐to‐one semi‐structured interviews to explore family members' experiences. They were asked open questions about previous eating routines, dysphagia onset, their role and future hopes. Interviews were audio‐recorded, transcribed and analysed thematically with an inductive approach to determine key features of family members' experiences. Outcomes & Results: Five spouses aged 70–93 years participated. Their relatives' strokes happened 3 months to 3 years before the interview. Five themes were identified: 'I do all of it'; making sense of dysphagia; emotional responses; reflecting on relationships; and redefining lifestyle. Conclusions & Implications: It is important to consider family members' perspectives as they often provide vital care to loved‐ones with dysphagia. In relation to eating and drinking, maintaining elements of previous routines seems important to families. Healthcare professionals should consider these when making recommendations for rehabilitation. Family members have differing perspectives of the comparative impact of dysphagia; patient and family priorities should be explored for healthcare professionals to provide better‐targeted support. What this paper adds: What is already known on the subject: Informal caregivers, often spouses, play a vital role in supporting the health and well‐being of older people with health conditions. The presence of post‐stroke dysphagia may present increased challenges for the informal caregiver. There are limited studies qualitatively exploring the experiences of informal caregivers in this population. What this paper adds to existing knowledge: Current health and social care provision for this population leaves informal caregivers feeling they have been left to manage dysphagia alone. Informal caregivers demonstrate a breadth of knowledge about their spouse's dysphagia, problem‐solving effective solutions. Informal caregivers have a range of interpretations of the nature and cause of dysphagia; leading to miscommunication with health professionals and complex emotional responses. What are the potential or actual clinical implications of this work?: Healthcare professionals might consider ways in which to support dysphagic patients' families later in their care pathway, through scheduling reviews or running dysphagia patient and family groups. Health and social care professionals and policymakers should learn from informal caregivers' expertise to promote better health and quality‐of‐life outcomes for the patient and caregiver. Equal, open conversations between health and social care professionals and patients/families on their understanding of dysphagia may help informal caregivers to better voice their concerns and support mutual understanding. This has implications for adherence to recommendations, psychological well‐being and patient safety. [ABSTRACT FROM AUTHOR]

Background: Nutrition by enteral tube is a complex therapy requiring significant management to ensure safe, timely delivery of nutrients and avoidance of complications. In the home setting, people with enteral tubes and their carers are required to self‐manage the therapy, including the need to cope with problems that arise. Whilst previous studies have conveyed experiences of people with enteral tubes, few have described views on enteral tube problems. Aims and objectives: Drawing on the findings of a previously reported study (Journal of Human Nutrition and Dietetics, 2019), this paper aims to describe in‐depth the experiences of people with enteral tubes and their carers of living with the tube day to day and managing problems that arise. Design: A qualitative descriptive design using semi‐structured in‐depth interviews was employed. Methods: A purposive sample of 19 people with enteral tubes and 15 carers of people with tubes participated. Interviews were recorded and transcribed. Using a thematic analysis approach, codes were defined and applied; themes developed and refined. Five themes with associated subthemes were generated, of which one, "living with the tube," is reported in‐depth. The COREQ checklist was used. Results: Participants described the tube affecting both physical and psychosocial being and revealed it had resulted in significant changes to their daily living, necessitating adaptation to a new way of life. Participants reported spending much time and effort to manage tube problems, at times without support from healthcare practitioners knowledgeable in tube management. Discomfort associated with the tube was commonly described. Conclusions: Living with an enteral tube impacts significantly on daily life requiring adaptations to normal routine. People with tubes and their carers use a range of strategies to manage common complications. Relevance to clinical practice: Knowledge and understanding of how people with enteral tubes live with their tube and manage issues as they arise will enable healthcare practitioners to provide better support. [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]

Aim: To explain the process taken by Chinese family care partners of older adults in the Greater Toronto Area, Canada, to access health and social services in their communities. The research question was: What mechanisms and structures impact the agency of Chinese family care partners of older adults, in the process of assisting them to access health and social services? Design: This qualitative study was informed by critical realism. Methods: Chinese family care partners of older adults in the Greater Toronto Area, Canada, were interviewed from August 2020 to June 2021. Transcripts underwent thematic analysis. Findings: Twenty-eight Chinese family care partners expressed a firm commitment to maintain caregiving conditions and to judiciously access health and social services. Their commitment was made up of three parts: (a) legislative and cultural norms of family, work, and society; (b) their perseverance to fill gaps with limited social and financial resources; (c) the quality of their relationship to, and illness trajectory of the older adults. The social structures created tension in how Chinese family care partners made decisions, negotiated resources, and ultimately monitored and coordinated timely access with older adults. Conclusion: Participants' commitment and perseverance were conceptualized as "grit," central to their agency to conform to legislative and cultural norms. Moreover, findings support grit's power to motivate and sustain family caregiving, in order for older adults to age in place as long as possible with finite resources. Implications for the profession: This study highlights the importance of cultural awareness education for nurses, enabling continuity of care at a systems level and for a more resilient healthcare system. Impact: Family care partners' grit may be crucial for nurses to harness when together, they face limited access to culturally appropriate health and social services in a system grounded in values of equity and inclusion, as in Canada. Reporting method: When writing this manuscript, we adhered to relevant EQUATOR guidelines of the Consolidated Criteria for Reporting Qualitative Research (COREQ). Patient or public involvement and engagement: No patient or public involvement. [ABSTRACT FROM AUTHOR]

Informal caregiving for older family members is increasingly recognized and encouraged by public policies. This is even more the case in familialistic countries such as Austria. This article aims to examine the role of the family in the care culture of a familialistic care regime through the experiences of care dyads combining upwards intergenerational family care and formal care services. The analysis is based on framework analysis of 48 face-to-face interviews, almost all conducted separately, with 24 care dyads of older care users (average age 86 years old with moderate to high care needs) and their main informal carers in Austria combining formal and informal care. A quarter of caregivers and care receivers were male. We identified four different ideals (family care, preferences, involvement, gendered care) which were distributed across different groups of Socio-Economic Status (SES) and described by women and men. [ABSTRACT FROM AUTHOR]

Introduction: Voluntary assisted dying (VAD) is increasingly being legalised internationally. In Australia, all six states have now passed such laws, with Victoria being the first in 2019. However, early research in Victoria on the patient experience of seeking VAD shows that finding a connection to the VAD system is challenging. This study analyses the causes of this 'point of access' barrier. Methods: We conducted semi‐structured qualitative interviews with family caregivers and a person seeking VAD, with participants recruited via social media and patient interest groups. Data were thematically analysed. We also undertook documentary analysis (content and thematic) of publicly available reports from the oversight body, the Voluntary Assisted Dying Review Board. Results: We interviewed 32 family caregivers and one patient across 28 interviews and analysed six Board reports. Finding a point of access to the VAD system was reported as challenging in both interviews and reports. Four specific barriers to connecting with the system were identified: (1) not knowing VAD exists as a legal option; (2) not recognising a person is potentially eligible for VAD; (3) not knowing next steps or not being able to achieve them in practice; and (4) challenges with patients being required to raise the topic of VAD because doctors are legally prohibited from doing so. Conclusion: Legal, policy and practice changes are needed to facilitate patients being able to find a connection to the VAD system. The legal prohibition on doctors raising the topic of VAD should be repealed, and doctors and institutions who do not wish to be involved in VAD should be required to connect patients with appropriate contacts within the system. Community awareness initiatives are needed to enhance awareness of VAD, especially given it is relatively new in Victoria. Patient or Public Contribution: Families and a patient were the focus of this research and interviews with them about the experience of seeking VAD were the primary source of data analysed. This article includes their solutions to address the identified point of access barriers. Patient interest groups also supported the recruitment of participants. [ABSTRACT FROM AUTHOR]

AIM: This study was conducted with the aim of assessing the needs and determining the care dimensions of the essential palliative care service package for the elderly with Alzheimer's disease. METHOD: The mixed exploratory study was conducted in three phases. The first phase of the study was conducted in the form of a qualitative study and a literature review. This qualitative research was done through in-depth and semi-structured interviews with 19 qualified caregivers (11 informal caregivers and 8 formal caregivers) The samples were selected using the purposive sampling method by referring to hospitals, nursing homes, and active branches of the Alzheimer's Association in some provinces. In the second phase, the dimensions of palliative care were codified, and in the third phase, the prioritization and the validation of the dimensions of palliative care were performed in the form of two Delphi rounds. RESULTS: Based on the results of the first phase of the study, the care dimensions of the service package were placed in eight categories based on National Consensus Project. In the second phase, the needs of Alzheimer's patients were arranged in the form of a questionnaire consisting of 8 parts, with 180 indicators. Then, in the third phase, the dimensions of the palliative care essential package were designed with 74 items in the form of 4 dimensions. CONCLUSION: The dimensions of the essential service package of palliative care included a series of interventions as well as physical, psychological, cognitive, and spiritual support. [ABSTRACT FROM AUTHOR]

Introduction: Integrated care can create several advantages, such as better quality of care and better outcomes. These advantages apply especially to clients with multiple problems (CWMPs) who have multiple, interconnected needs that span health and social issues and require different health care (e.g., mental health care or addiction care), social care (e.g., social benefits) and welfare services at the same time. Integrated care is most often studied as a phenomenon taking place at the system, organizational, professional and clinical levels. Therefore, in many studies, clients seem to be implicitly conceptualized as passive recipients of care. Less research has been conducted on how clients and (in)formal caretakers coproduce integrated care. Methods: We performed a longitudinal study to investigate how CWPMs and (in)formal caretakers coproduce integrated care. Data were collected among CWMPs and their (in)formal caretakers in Rotterdam, the Netherlands. CWMPs' care trajectories were followed for 1–1.5 years. CWMPs were interviewed three times at an interval of 6 months (T0, T1, T2). Informal caretakers were interviewed three times (T0, T1, T2), and formal caretakers of 16 clients were interviewed twice (T1, T2). Data in the municipal record systems about participating CWMPs were also included. Results: Our study shows that the CWMPs' multidimensional needs, which should function as the organizing principle of integrated care, are rarely completely assessed at the start (first 6 weeks) of CWMPs' care trajectories. Important drivers behind this shortcoming are the urgent problems CWMPs enter the support trajectory with, their lack of trust in 'the government' and the complexity of their situations. We subsequently found two distinct types of cases. The highest level of integrated care is achieved when formal caretakers initiate an iterative process in which the CWMP's multidimensional needs are constantly further mapped out and interventions are attuned to this new information. Conclusions: Our study indicates that integrated care is the joint product of formal caretakers and CWMPs. Integrated care however does not come naturally when CWMPs are 'put at the center'. Professionals need to play a leading role in engaging CWMPs to coproduce integrated care. Patient Contribution: CWMPs and their (in)formal caretakers participated in this study via interviews and contributed with their experiences of the process. [ABSTRACT FROM AUTHOR]

Family caregivers play an essential role in healthcare for elderly people in primary care settings. The complexity of geriatric patients as well as the fragmentation of healthcare systems can lead to a burden for family caregivers, which can affect their physical and psychological health as well as social relationships, economic productivity and quality of caregiving. Care‐ and case‐management offers a possibility to support, empower and navigate family caregivers through healthcare systems in order to reduce their own burden. The project RubiN (Continuous care in a regional network) was developed to provide regional care‐ and case‐management for outpatient care of the elderly (age >70 years) in a primary care setting in Germany. The aim of this qualitative study was to explore experiences and attitudes of family caregivers of geriatric patients regarding the community‐based care‐ and case‐management intervention RubiN. Telephone interviews with a purposeful sample of 21 family caregivers enlisted in all RubiN networks were conducted between March and May 2020 and were followed by qualitative content analysis. The main categories, which emerged were namely: (1) current healthcare situation and (2) experiences with RubiN. Main findings suggest that participants in this study valued the provided support and experienced a sense of relief. However, some participants were disappointed with RubiN and the included support by care‐ and case‐managers. A care‐ and case‐management affected caregiving per se as well as the patient's and family caregiver's well‐being. Important aspects contributing to these findings were a continuous relationship, training and expertise of the care‐ and case‐managers. Establishing networks between the patients, family caregivers, care‐ and case‐managers and healthcare providers were key components as well as a good explanation about RubiN itself for family caregivers. Therefore, a community‐based care‐ and case‐management can play an important role in detecting, facilitating and preventing family caregiver burden. [ABSTRACT FROM AUTHOR]

Informal caregivers provide the major part of care for persons with amyotrophic lateral sclerosis (ALS), a terminal neurodegenerative disease. Apart from providing care, informal caregivers are themselves in need of support to fulfill the task of daily caregiving and to reduce their burden of caregiving. This need for support does not end with the death of the person cared for. In this study, we explore the themes of bereavement and support experience of informal caregivers of persons with ALS from interviews conducted with bereaved informal caregivers (n = 14) in Switzerland. Three key themes were salient in our data: Reacting to bereavement, finding support, and adjusting to life without the person with ALS. These themes are contrasted with themes from interviews (n = 11) with healthcare professionals (nurses, therapists, physicians) who care for patients and families with ALS. The themes described were offering support and identifying gaps in the support. We discuss support after bereavement for informal caregivers of persons with ALS in the established public health model of bereavement support. Bereavement support needs to be proactive from healthcare professionals; however, it requires the goodness of fit to address those in need and not those who are adequately supported by informal sources of support. [ABSTRACT FROM AUTHOR]

Purpose: Exploring the views of those impacted by stroke is key to the design of an effective and appropriate cognitive rehabilitation intervention for post-stroke cognitive impairment. This qualitative study examined the perspectives and preferences of stroke survivors, carers, and healthcare professionals to inform the design of a cognitive rehabilitation intervention. Design and methods: The research employed a qualitative study design and thematic analysis of data. In-depth semi-structured interviews were conducted with stroke survivors (n = 14), carers (n = 11), and healthcare professionals involved in providing stroke care (n = 19). Interviews were audio-recorded and transcribed. Coding was conducted and themes were developed both inductively and deductively. Results: Themes address five broad areas relevant for the design and implementation of the intervention: (i) activities to include; (ii) when it takes place; (iii) location; (vi) format; (v) who the intervention should include. Conclusions: Qualitative work with stroke survivors, carers and healthcare professionals provided vital information for the intervention design. Issues identified by participants as being key to intervention development included: (i) implications of post-stroke cognitive impairment survivors' confidence; (ii) their individual capacity in terms of fatigue and metacognition; and (iii) practical issues such as intervention location. The inclusion of psychoeducation regarding consequences of stroke was recommended. Stroke survivors, carers, and rehabilitation professionals who provide stroke care can provide valuable insights and ideas to inform the development of a cognitive rehabilitation intervention. A cognitive rehabilitation intervention should be tailored to patient-specified goals, incorporating both group and individualized activities. Information, education, and communication are required to help stroke survivors and carers understand the cognitive, emotional, and behavioral consequences of stroke. Intervention content should be considerate of stroke survivors' capacity in terms of cognitive impairment and fatigue levels. [ABSTRACT FROM AUTHOR]

Caring for children with disabilities (CWD) is a challenging task for families and service providers alike. Even though previous research has explored experiences and perceptions of families who care for CWD, research focusing on service providers' perceptions of such families is limited. Through the lens of a care framework, the present study aims to explore service providers' perceptions of families caring for CWD in resource‐poor settings in South Africa. Key informant interviews were conducted with managers of 10 organizations supported by the Nelson Mandela Children's Fund. An inductive thematic analysis was used to analyse the data. The findings revealed that family structure, poverty, service inaccessibility, negative beliefs, and stigma by community members, in addition to parental substance abuse, influenced how families care for CWD in resource‐poor settings in South Africa. These findings have implications for policy amendments regarding the care dependency grant (CDG) to ensure that it benefits all CWD and not only those who need full‐time care and services. [ABSTRACT FROM AUTHOR]

Background Middle-aged and older adults requiring skilled home healthcare ('home health') services following hospital discharge are at high risk of experiencing suboptimal outcomes. Information management (IM) needed to organise and communicate care plans is critical to ensure safety. Little is known about IM during this transition. Objectives (1) Describe the current IM process (activity goals, subactivities, information required, information sources/targets and modes of communication) from home health providers' perspectives and (2) Identify IMrelated process failures. Methods Multisite qualitative study. We performed semistructured interviews and direct observations with 33 home health administrative staff, 46 home health providers, 60 middle-aged and older adults, and 40 informal caregivers during the preadmission process and initial home visit. Data were analysed to generate themes and information flow diagrams. Results We identified four IM goals during the preadmission process: prepare referral document and inform agency; verify insurance; contact adult and review case to schedule visit. We identified four IM goals during the initial home visit: assess appropriateness and obtain consent; manage expectations; ensure safety and develop contingency plans. We identified IM-related process failures associated with each goal: home health providers and adults with too much information (information overload); home health providers without complete information (information underload); home health coordinators needing information from many places (information scatter); adults' and informal caregivers' mismatched expectations regarding home health services (information conflict) and home health providers encountering inaccurate information (erroneous information). Conclusions IM for hospital-to-home health transitions is complex, yet key for patient safety. Organisational infrastructure is needed to support IM. Future clinical workflows and health information technology should be designed to mitigate IM-related process failures to facilitate safer hospital-to-home health transitions. [ABSTRACT FROM AUTHOR]