Search

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]

Introduction: Older carers or 'care partners' of older people experiencing care needs often provide essential support, at times while neglecting their own health and well‐being. This is an increasingly frequent scenario due to both demographic changes and policy shifts towards ageing in place. Multiple community stakeholders within the care and support ecosystem hold valuable expertise about the needs of older care partners, and the programme and policy responses that may better support their health and well‐being. The aim of this study was to identify the perspectives of stakeholders obtained through the codesign phase of a multicomponent research project investigating new models of care and support for older care partners suitable for the Australian context. Methods: Principles of codesign were used to engage a purposeful sample of older care partners, health professionals, researchers, policy makers and health service administrators. Participants took part in a series of three codesign workshops conducted remotely via video conferencing. The workshops were supported with briefing material and generated consensus‐based summaries, arriving at a preferred service model. Findings: This paper reports the research design and structure of the codesign panels, the range of findings identified as important to support the health and well‐being of older carers of older people, and the resulting service model principles. The codesigned and preferred model of care is currently being prepared for implementation and evaluation in Australia. Public Contribution: This study was conducted using codesign methodology, whereby stakeholders including older care partners and others involved in supporting older carers, were integrally involved with design, development, results and conclusions. [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]

Background: Family caregivers are vital for long-term care for persons with serious health-related suffering in Kerala. Long-term caregiving and ageing may become burdensome and detrimental to patients and caregivers. We compared the caregiver burden and quality-of-life of ageing caregivers with younger caregivers. We also explored the palliative care nurses' perceptions of the family caregivers' issues. Methods: We did a mixed method study focusing on two groups: (i) three in-depth interviews and a cross-sectional survey among 221 caregivers of palliative care patients in five randomly selected panchayats (most peripheral tier of three-tier local self-government system in India concerned with governance of a village or small town) of Kollam district, Kerala, as part of development and validation of the Achutha Menon Centre Caregiver Burden Inventory; (ii) five in-depth interviews with purposively selected primary palliative care nurses as part of a study on local governments and palliative care. We used a structured interview schedule to collect cross-sectional data on sociodemographic and caregiving-related characteristics, caregiver burden, and health-related quality of life using the EuroQol EQ5D5L and interview guidelines on caregiver issues tailored based on participant type for qualitative interviews. Results: Older caregivers comprised 28.1% of the sample and had significantly poorer health and quality-of-life attributes. More senior caregivers experiencing caregiver burden had the lowest mean scores of 0.877 (Standard deviation (SD 0.066, 95% confidence intervals (CI) 0.854–0.899) followed by younger caregivers with high burden (0.926, SD 0.090, 95% CI 0.907–0.945), older caregivers with low burden (0.935, SD 0.058, 95% CI 0.912–0.958) and younger caregivers with low burden (0.980, SD 0.041, 95% CI 0.970–0.990). Caregivers faced physical, psychological, social, and financial issues, leading to a caregiver burden. The relationships between the palliative care nurses and family caregivers were complex, and nurses perceived caregiver burden, but there were no specific interventions to address this. Conclusion: In our study from Kollam, Kerala, three out of ten caregivers of palliative care patients were 60 years of age or older. They had significantly lower health-related quality of life, particularly if they perceived caregiver burden. Despite being recognized by palliative care nurses, caregiver issues were not systematically addressed. Further research and suitable interventions must be developed to target such problems in the palliative care programme in Kerala. [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]

Aims: To explore older inpatients and their caregivers' care experience and how this relates to the gerontology care practice. Background: Research interest in the conceptualization of safe care for older inpatients was growing, and these studies were predominantly reported from a single or healthcare perspective. There is a shortage of literature on how patients and their caregivers conceptualise safe care. Design: Constructivist grounded theory. Methods: Stage 1 included semi‐structured interviews with inpatients. Stage 2 included semi‐structured interviews with caregivers and six field notes. Purposive and theoretical sampling were used to recruit 61 participants across six healthcare institutions. Data analysis included initial coding, focused coding, and theoretical coding using constant comparative, field notes and memo writing. Results: The substantive theory to emerge from the data was A balance of unsafe care incidents and interactive cooperative care. This core concept was informed by four categories: unsafe care incidents, interactive cooperative care, person‐centred care, contextual conditions, and one care outcome. The relationships between these categories constituted a balance in which patient‐centred care was the core, unsafe care incidents were the barriers, interactive cooperative care was the facilitator, and the result of the balance was the care outcome. The balance constituted a safe care ecosystem under the interaction of contextual conditions. Conclusions: Interactive cooperative care is vital in enabling care stakeholders to reduce unsafe care incidents, which facilitates them in achieving safe care and further constructing a healthy care ecosystem. Relevance to Clinical Practice: This theory identifies barriers and facilitators encountered by care stakeholders to cope with everyday problems and guides them in developing personalised care plans to ensure patient safety. [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]

Aims: To gain insights into the barriers towards the prevention and/or reduction of involuntary treatment in long‐term geriatric care. Design: Mixed methods. Background: Measures to which a person resists and/or does not provide consent for are defined as involuntary treatment. The use of involuntary treatment violates the autonomy of (older) persons and causes more harm than benefit. Moreover, it contradicts the values of person‐centred care. Nevertheless, its use among people living with dementia (PLWD) is still common practice. Methods: We conducted a cross‐sectional, mixed methods study, including an online survey for professional caregivers and a semistructured focus group interview with professional caregivers. Results: A total of 218 participants completed the questionnaire. The percentage of participants who perceived barriers in one of the 22 survey items ranged from 15% to 42%. Lack of time, the experienced need to use involuntary treatment, uncertainty about responsibilities of stakeholders and a lack of knowledge on methods to prevent and/or reduce the use of involuntary treatment were most seen as barriers. Nursing staff perceived a lack of time hindering them in the prevention or reduction of involuntary treatment more often than other professional caregivers. Working in home care and having no former experience with involuntary treatment usage increased perceived barriers. Participants of the focus group interview confirmed these findings and added that professional caregivers in general lack awareness on the concept of involuntary treatment. Conclusions: One out of four professional caregivers experiences barriers hindering prevention and/or reduction of involuntary treatment. More research is needed to gain a better understanding of how professional caregivers can be supported to remove barriers and, consequently, prevent and/or reduce the use of involuntary treatment. Relevance to Clinical Practice: Professional caregivers experience many barriers towards the prevention and reduction of involuntary treatment. Future initiatives should aim to remove the perceived barriers. [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]

Background: Palliative care has been recognised as a global health challenge. Although accessibility has increased, there is little recognition of the importance of palliative care in low- and middle-income countries. In Bangladesh, institutional palliative care is not accessible due to a lack of awareness, financial constraints, and fewer facilities. Hence, there needs to be a better understanding of providing and improving existing community-based palliative care. For this, it is essential to understand the experiences of patients and their caregivers who require palliative care. With this aim, this study explores the experiences of palliative patients and their primary caregivers enrolled in a palliative care project, ‘Momotamoy Korail’ run by Bangabandhu Sheikh Mujib Medical University in an urban slum, Dhaka. Methods: This research is a part of a larger qualitative study that relied on a focused ethnographic approach. For this study, we used 19 in-depth interviews following a semistructured guideline with the palliative care patients and their primary caregivers enrolled in the community-based palliative care project. Results: Mostly women (wives and daughters-in-law) are the primary caregivers in a family. Therefore, male patients are more likely to receive family care than female patients. Both male and female patients expressed the desire for a death free of suffering. All patients felt lonely and socially abandoned with a perception of being a burden to their families. Despite the diversity in physical, social, psychological, and financial suffering, patients and caregivers were optimistic towards a healthy life free of illness. All respondents were satisfied with the care they received from the palliative care assistants, which provide them hope and dignity for life. Conclusion: Experiences of the respondents can improve the quality of the existing community-based palliative care services and add great value to the discipline of palliative care in public health. The findings provided an understanding of what would be required to extend community-based palliative care to other healthcare settings. More awareness through community mobilisation about the need for and benefit of palliative care is needed to make it sustainable. [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]

Aims Caregivers of persons living with ventricular assist devices (VADs) are integrally involved in both medical and non-medical care. We sought to understand tasks caregivers perform after surgical recovery, ways the home is adapted for those tasks, and presence of home safety hazards. Methods and results We conducted semi-structured interviews with persons living with a VAD and their caregivers. Pictures were taken of areas in the home where: (i) caregiving activities occurred, (ii) VAD or medical supplies were kept, and (iii) home adaptations were made for VAD care. Pictures were described in written detail and analysed. A qualitative descriptive approach was used for analysis. The sample consisted of 10 dyads, with mostly spousal relationships (60%) between male patients (60%) and female caregivers (80%). Three themes were identified: (i) Evolution of Caregiving and Support: Patients gain independence, but caregivers are still needed, (ii) Adapting the Home Environment: Changes are focused on functional needs, and (iii) Hidden Dangers: Illumination of safety concerns by photographs. Assistance with bathing, driveline care, and medication management were common caregiving tasks. Most home adaptations occurred in the bathroom and bedroom including sleeping recliners, shower chairs, removable shower heads, and hanging hooks to hold VAD equipment. Safety hazards included minimal space for safe ambulation, infection risk, and home-made adaptations to the environment. Conclusions These findings describe key home caregiving tasks, home adaptations, and safety concerns that require further education and support. Utilizing pictures may be a feasible method for assessing VAD teaching, caregiving needs, and identifying potential risks. [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]

Introduction: Dementia in adults with Down syndrome causes a progressive decline in daily occupations impacting both persons with Down syndrome and their informal caregivers. This study aimed to explore the scope of occupational therapy practice for adults with both Down syndrome and dementia and their informal caregivers living in their homes. Methods: A survey was conducted with occupational therapists having clinical experience in providing interventions for adults with Down syndrome. A web‐based survey was developed to explore occupational therapy practice for this group of people with Down syndrome and their informal caregivers. Responses to closed‐ended questions were analysed descriptively, and inductive content analysis was used for open‐ended questions. Results: Forty‐three occupational therapists from Australia, Canada, United Kingdom and the United States of America participated in the survey. Two‐thirds were from the United Kingdom, most of whom were employed in the public sector and had at least 10 years of clinical experience. Over 90% of respondents received one or more referrals in a typical month for adults with Down syndrome having dementia, 68% of which were for a decline in activities of daily living. Home environment and activities of daily living were frequently assessed areas, and the commonest interventions were compensatory strategies and environmental modifications. Only half the respondents provided interventions for informal caregivers. Risk and safety and manual handling were frequently addressed domains for informal caregivers. Collaboration and developing clinical expertise were the two key perceived enablers for providing effective occupational therapy services. Fragmentation of services and a lack of client‐centred care were the common perceived barriers. Conclusion: Occupational therapists often address decline in activities of daily living for individuals with both Down syndrome and dementia. To support participation in meaningful occupations for these people and support the needs of their informal caregivers, it is essential that services are offered in a collaborative approach. [ABSTRACT FROM AUTHOR]

Language and communication difficulties are common in dementia but limited tools are available for a timely assessment of those individuals who experience these difficulties. The Communication‐Support Needs Assessment Tool in Dementia (CoSNAT‐D) was developed to assist in (a) the early identification of communication difficulties among people with dementia in the community context; and (b) determining the level of their communication support needs to guide appropriate service access. The CoSNAT‐D was developed based on a literature review. The face validity was tested with end‐users (people with dementia and support persons of people with dementia) regarding relevance, wording, syntax, appropriateness and comprehensiveness of the items of the tool. Data were collected using semi‐structured phone interviews. Seven people with dementia and 15 carers participated in the study. Feedback regarding items' appropriateness was largely positive and minor changes were made to improve comprehensiveness. A new item was added to the original item pool. The interviews highlighted the importance of including people with dementia in the assessment processes and person‐centered approaches in this context. The CoSNAT‐D presents a first step for the early identification of individual support needs of people living with dementia and communication difficulties who live in the community. Items of the CoSNAT‐D have been determined face‐valid by end‐users. The face‐validated version of the tool is currently undergoing further testing to determine additional relevant psychometric properties. [ABSTRACT FROM AUTHOR]

Background: Patients are often not actively involved in their acute pain management. Objectives: To understand the attitudes of patients, family caregivers and nurses to patient participation in pain management after their knee or hip joint replacement. Design: Q-methodological design. Methods: 45 participants were recruited, included 15 patients, 15 caregivers and 15 nurses. Forty-nine statements were rank-ordered in a Q-sort table. Results: Four factors which explained 65% of the variance were identified from factor analysis. They are named "Endurers", "Supporters", "Worriers" ,and "Wabblers". Conclusion: Each group have a significant knowledge deficit in pain management. Patients and caregivers were more likely to have a passive attitude and false cognition towards pain and analgesic drugs. Nurses often play a role as a supporter, however, it is hard for them to understand their important role in facilitating patient involvement in their pain management. [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]