Search

Objective: The purpose of this paper was to examine variables associated with food insecurity among community college caregivers during the COVID-19 pandemic. Methods: We used data from a multi-institutional survey of 15,051 caregivers enrolled at 130 community colleges in 42 states in fall 2020. We used a logistic regression to examine whether demographic, academic, caregiving-related, financial, or COVID-19-related variables were associated with caregivers' food insecurity. Results: Over half (52%) of community college caregivers experienced food insecurity. Transgender caregivers, first-generation caregivers, and caregivers who were divorced or single, had multiple disabilities, were previously in foster care, and had a family that experienced trouble making ends meet growing up had significantly (p < 0.05) higher probabilities of experiencing food insecurity. Community college caregivers who used childcare and those with at least one child up to 12 years old also had increased probabilities of experiencing food insecurity. Moreover, caregivers who felt childcare was not affordable and believed that they did not earn enough money to make employment worthwhile after paying for childcare expenses had higher probabilities of experiencing food insecurity, as did those who experienced housing insecurity and used Pell grants, student loans, and support from friends or family to pay for college. Losing a job, experiencing cuts to work hours or wages, employment as a frontline worker, and contracting COVID were associated with higher probabilities of food insecurity. Contributions: Community college caregivers experienced high rates of food insecurity during the pandemic and some caregivers were at greater risk of exacerbated probabilities of food insecurity. We advocate for targeted interventions, wraparound services, and increased advocacy for legislation to support student caregivers.

The lives of caregivers can be deeply impacted by having a child with a developmental disability (DD). To offset those impacts, caregivers may engage in accommodations, or strategies to bolster everyday functioning. The nature and extent of these accommodations can provide insight into how the family is doing and what supports are needed from a family-centered perspective. This paper presents the development and preliminary validation of the Accommodations & Impact Scale for Developmental Disabilities (AISDD). The AISDD is a rating scale that measures day-to-day accommodations and impacts of raising a child with a DD. A sample of 407 caregivers of youth with DDs (M[subscript age] = 11.7 years; 63% males) completed the AISDD, along with measures of caregiver strain, daily challenges, child adaptive behavior, and behavior and emotional regulation. The AISDD is a unidimensional, 19-item scale with excellent internal consistency (ordinal alpha = 0.93) and test-retest (ICC = 0.95) reliability. Scores were normally distributed and sensitive to age (r = - 0.19), diagnosis (ASD + ID > ASD > ID), adaptive functioning (r = - 0.35), and challenging behaviors (r = 0.57). Finally, the AISDD showed excellent convergent validity with similar measures of accommodations and impacts. These findings support the use of the AISDD as a valid and reliable tool for measuring accommodations among caregivers of individuals with DDs. This measure shows promise in its ability to identify which families may need additional support for their children.

To date, there is a lack of suitable assessment tools specifically for the looked after child population. Such assessments, often completed by foster carers, help to provide an overview of a child's presenting level of emotional and behavioural need, and are evidential in offering a pathway to further provision and services for young people in care. This study explores perspectives of foster carers working at one UK-based independent fostering agency, Five Rivers Child Care (FRCC). The twofold study, conducted in 2017, involved understanding foster carers' perceptions both of routine assessments and subsequent feedback procedures; activities which are mandatory to facilitate foster carers' understanding of the wellbeing needs of the young people within their care. In Study 1, an online quantitative survey established foster carers' (n = 42) experiences of assessment and intervention, over a six-month timeframe. Study 2, conducted with a subsample of carers (n = 6) used telephone interviews to provide additional qualitative insight. The findings of both studies were consistent, highlighting the need for enhanced relevance of assessments, active involvement in the assessment process, more knowledge of the process; greater support with assessments; and further opportunity to self-reflect. The paper reflects on how the findings resulted in developments within the FRCC assessment process in 2018, including adaptations and additions to its protocol, with the aims of improving outcomes for children in care services, increasing collaboration and support, and enhancing reflection and practice. These findings have allowed for assessments to be tailored or changed, with carers being far more involved and informed of the process, resulting in improved practice and enhanced learning about this population. Furthermore, this study has wider implications beyond FRCC: the extracted themes are likely to be highly pertinent and applicable across similar populations, with assessment protocols enhancing understanding about the expectations and challenges that might emerge within this population.

Aim: To map existing evidence and identify gaps in the literature concerning psychosocial impacts of being nil by mouth (NBM) as an adult. Design: A scoping review of the literature was undertaken using JBI guidance. A protocol was registered on the Open Science Framework (osf.io/43g9y). Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta‐Analysis extension for Scoping Reviews (PRISMA‐ScR). Methods: A comprehensive search of six databases (CINAHL, Embase, MEDLINE, PsycINFO, SCOPUS and Web of Science) was performed for studies published up to February 2023, with no restriction to study type. A scope of the grey literature was also undertaken. Two authors independently assessed eligibility and extracted data. Descriptive statistical analysis and narrative synthesis were used, and patient and public involvement included in funding discussions. Results: A total of 23 papers were included in the review, consisting of 14 primary studies (7 qualitative and 7 quantitative) and 9 grey literature. Both global psychological distress and distress specific to being NBM (thirst, missing food and drink) were reported. Caregivers also experience distress from their family member being NBM. Furthermore, social impacts were reported for both patient and caregiver, primarily social isolation and subsequent low mood. Conclusion: Furthermore, research is needed to understand the prevalence of this population, how best to measure psychosocial impacts and to explore whether (and how) psychosocial impacts change over time. Advancement in this area would enable better service development to optimize care for this patient group. What is known about this topic?: Eating and drinking provides more than nutrition and hydration.A wide range of conditions can lead to recommendations for no longer eating and drinking (nil by mouth).Being nil by mouth (NBM) for short periods such as pre‐operative fasting causes distress; however, little is understood about impact on longer‐term abstinence from eating and drinking. What this paper adds?: Psychosocial consequences of being nil by mouth (NBM)have been investigated by both quantitative and qualitative studies.Being NBM impacts both patients and caregivers in various psychosocial aspects, including distress and social isolation.Several gaps remain, however, regarding ways to measure psychosocial impact of being NBM. [ABSTRACT FROM AUTHOR]

Background: Liver disease is an increasing cause of morbidity and mortality in the United Kingdom and can be challenging to live with in the advanced stages. There has been little research exploring the healthcare experiences of UK individuals with decompensated disease when the liver cannot carry out its functions properly. A PhD research project was developed with people who have liver disease to explore care experiences in decompensated advanced liver disease. Public involvement (PI) is an essential aspect of meaningful health research, and this paper reports on the progression of our PI approach in this ongoing study. Objective: To embed PI throughout the research project to ensure that the study is meaningful to individuals with liver disease and the people who support them. Methods: The research adopts a Constructivist Grounded Theory methodology to develop a theory of care experience. Various PI approaches were considered in developing the PI strategy for this qualitative study. Initially, Embedded consultation was the preferred model, which has evolved to include aspects of collaboration and coproduction. A PI group was set up to oversee the project through the national public engagement website VOICE, and reflections on PI from three members of the group are included in this paper to illuminate the PI process. Results: Six individuals with liver disease and three carers from across the United Kingdom are part of an ongoing PI group. Their role includes commenting on the findings of the systematic literature review for this project and contributing to decisions about recruitment, data collection and data analysis. Additionally, they had a direct impact on changing the focus of the research. The PI group will continue involvement until the completion of the project. Conclusion: Successfully embedding PI into doctoral research, as demonstrated in this project, requires commitment, planning and dedication to reciprocal working for the benefit of PI contributors as well as the research. This approach could be adopted by other postgraduate researchers. Patient or Public Contribution: This project is overseen by the PI group, whose contribution is described throughout, including reflections from three PI group members. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to provide a literature review on what is known about unpaid family carers who are at risk of or have experienced abuse from the people they provide care for and relevant policy/legal and practice responses for affected family carers. Design/methodology/approach: A literature search was carried out to locate literature relating to unpaid family carers who are at risk of or have experienced abuse from the people they provide care for. This also incorporated grey literature, including policy guidance and law, to determine the existing knowledge base, gaps in practice and areas that might require further research. Findings: The findings suggest that although carer harm is serious, it is under-researched. In addition, the unique needs of unpaid family carers who are at risk of or have experienced abuse, violence and harm from the people they provide care for are subsumed in safeguarding policy/law processes and practice under the auspices of the protection of "adults at risk" rather than the protection of "carers at risk". Research limitations/implications: It is important that those who support unpaid family carers who are at risk of abuse and harm know about their unique safeguarding needs and concerns to offer appropriate support. It is also apparent that policy and law need to address the gap in provision relating to the unique safeguarding concerns involving the abuse of unpaid family carers by the people they provide care for. This paper is based on this literature review and not on other types of research. Originality/value: The paper provides insights into what is known about the abuse of unpaid family carers by the people they provide care for, and the policy/legal and practice responses to affected unpaid family carers. It contributes to the body of knowledge on carer abuse and safeguarding carers from abuse and harm. [ABSTRACT FROM AUTHOR]

Background: Family caregivers have a vital role to play in palliative care for chronically ill patients. In Taiwan, caregiver demographics are evolving, with the number of male caregivers increasing. Gender differences influence psychosocial behaviours, thought processes and communication styles. In healthcare, acknowledgement of gender differences facilitates effective delivery of high‐quality care. Aim: The aim of this study is to explore male caregivers' decision‐making process for palliative care for chronically ill family members. Methods: This study employed grounded theory to generate a substantive theory of male caregivers' decision‐making process for palliative care for chronically ill family members. We recruited 22 male participants from three inner‐city teaching hospitals in Taiwan. Findings: Regarding the decision‐making process of palliative care of chronic ill family, where male caregivers do not want their loved ones suffering anymore, the male caregivers' decision‐making process was impacted, first, by caregivers' views on the last stage of life; second, by their wish for good care during the end of life; and third, by their conviction that the patients' wishes should be respected. Furthermore, caregivers' philosophy of life and death is also a supportive ground for decision‐making. This philosophy was influenced by their education in palliative care, financial status and religious beliefs and practices. The core category emerging from this study is encapsulated by a participant's assertion, 'How difficult is it? There are no male and female differences'. Conclusion: We found that palliative care experiences of male caregivers are important for the decision‐making process for palliative care for their chronically ill family members. Caregivers want their loved ones to receive good care as the last step in life, to respect their wishes and no more suffering for the patient. Therefore, health professionals should be familiar with the palliative care process that caregivers go through to offer updated information when needed. Summary statement: What is already known about this topic? Taiwanese philosophy of end‐of‐life care focuses on family values and shares the power of making critical decisions between patients and their relatives.Due to cultural preferences, the dedicated family caregiver often becomes the only channel for honouring the patient's wishes.Male and female caregivers can have different coping mechanisms; males are less likely to seek support and are more stressed by financial burdens. What this paper adds? The patient and the whole family should be considered in the discussion of end‐of‐life care.Male caregivers indicated palliative care should be linked to comfort care, avoidance of suffering and respecting patients' wishes. The implication of this paper: Male caregivers should be well supported, good care for their loved ones and fulfil the patient's wishes and no more suffering.Education in palliative care and religious and financial support should be provided along with palliative care services to both male caregivers. [ABSTRACT FROM AUTHOR]

Aim: The inquiry explored immigrant informal caregivers' experiences and perceptions about engaging with professional services in the host country. Background: The number of informal caregivers is rising, with more people providing home caring. Nurses and other health services are crucial in supporting informal caregivers. Research needs to focus more on immigrants, not just other caregivers. Design: This was a scoping review. Data Sources: Five databases (January 2017–December 2022) were searched, and 16 articles were included in this inquiry. Review Methods: This scoping review used the Joanna Briggs Institute Scoping Review methodology. This inquiry asked one question: What is the current knowledge about immigrant informal caregivers' experiences and perceptions when engaging mainstream professional services? Themes were identified using a thematic analysis approach. Results: Three themes emerged from the review: 'finding cultural bridges: culturally connecting with services'; 'building cultural bridges: addressing "them and us" and "acculturation‐sensitive services"'. Conclusion: Professional service providers are currently not meeting immigrant caregivers' needs. New knowledge is presented, that nurses and health professional services must provide acculturation‐sensitive care, commencing with an assessment of the individual's acculturation status. By understanding acculturation status, nurses are more likely to customize person‐centred care. Acculturation status refers to the degree that the individual has adapted to the new culture while retaining some traditional cultural beliefs and practices. Acculturation‐sensitive care is more likely to provide authentic holistic care that optimizes well‐being. Summary statement: What is already known about this topic? Nurses and other health services are crucial in engaging and supporting informal caregivers when providing person‐centred care.The number of informal caregivers is rising due to ageing individuals, and more care was provided at home during the COVID‐19 pandemic. What this paper adds? The cultural background of informal caregivers and their care recipients influences their service use in the new country, as does education and financial resources.Immigrant caregivers questioned the appropriateness of professional services to meet their cultural needs.Cultural needs can be met through acculturation‐sensitive nursing; a new proposed approach that assesses the cultural status of individuals in order to determine appropriate culturally and religiously sensitive person‐centred care. The implications of this paper: As yet, nurses and other health professional services are not providing acceptable, culturally and religiously sensitive care that meets the needs of immigrant informal caregivers; urgent education and professional development are required about acculturation‐sensitive care.All professional services, particularly nurses, should assess acculturation status and be well placed to support caregivers, such as navigating health systems, while adapting to a new country and culture occurs.Professional services, particularly nurses, need to advocate for immigrant informal caregivers by connecting with ethnic groups to provide comprehensive education to enhance awareness of support needs for families with chronic conditions. [ABSTRACT FROM AUTHOR]

Introduction: People with a borderline personality disorder (BPD) diagnosis or symptoms may experience emotional crises which necessitate use of the emergency department (ED). No existing reviews focus specifically on experiences of consumersa, carersb and clinicians in relation to ED presentations by people diagnosed with BPD. Aim/Question: The aim of this study was to synthesise knowledge on consumer, carer and clinician experiences of BPD in the ED. Method: An integrative review methodology was chosen as it best captures the complexity of varied perspectives and emergent phenomena from diverse literature sources. EMBASE, CINAHL, PsycInfo and Medline were searched for papers published before 16 February 2022. Results: Nine papers met the inclusion criteria (five qualitative, one quantitative, one mixed methods and two letters to the editor). Key themes were barriers to timely and adequate care, and stigmatising attitudes and practices towards people diagnosed with BPD. Negative attitudes were perceived to perpetuate harmful outcomes and further ED visits. Discussion: Predominantly negative ED experiences were expressed by clinicians, consumers and carers. Further work is needed in ED models of care and staff education to improve the experience of care for consumers, carers and clinicians alike. Implications for Practice: Opportunities for change will exist through co‐designed innovation, education, advocacy and leadership. [ABSTRACT FROM AUTHOR]

Purpose: As populations are ageing and the global average life expectancy is rising, the provision of care for older people is an increasingly salient issue. This paper aims to focus on family-provided care for older immigrants, examining how older immigrants and care providers experience and construct family caregiving. Design/methodology/approach: Based on interviews with care recipients, family care providers, municipal staff and representatives for migrant organisations in Sweden, this study presents a typology of family caregiving for older immigrants. Findings: The authors found three caregiving types, namely, solely family-provided care and a combination of family care and public care (predominantly one or the other). The decision to select family-provided or publicly-funded care depends on personal and institutional factors. Originality/value: The paper makes three empirical contributions to the literature on care provision for older immigrants. Firstly, this study provides insights into the structural and personal factors that shape care-giving arrangements for older immigrants. Secondly, this study examines the perspectives of care recipients and care providers on family-provided care. Care expectations differ between both groups and sometimes result in intergenerational disagreement. Thirdly, in terms of institutional support, this study finds that the Swedish state's notion of individual needs does not match the needs of immigrant elderly and their caregivers. The paper places the care types in a broader discussion about eldercare provision in the Swedish welfare state, which has experienced a decline in publicly funded care services and an increase in family caregiving in the past 30 years. In addition, it addresses questions of dignified ageing from a minority perspective. [ABSTRACT FROM AUTHOR]

Purpose: Three deaths at Cawston Park Hospital shed a bright light on Norfolk's services for people with learning disabilities and autism, including those operated by the company that ran the hospital. The purpose of this paper is to review Norfolk County Council's current position from the unique aspect of a senior manager wihtin the system. Design/methodology/approach: This paper reviews the unique perspective of a social worker from within the system. Findings: The process of making change included engagement and action concerning such thorny challenges as the pressures on community services; the undervaluing of care-giving as a career; and the continuing admissions to specialist mental health services at a time when hospital discharges are being expedited. Originality/value: Norfolk's investment in improving its services involves the adoption of a human rights approach; a capital programme to facilitate new developments; nurturing care-giving as a career; and bringing a clearer evidence base to this work programme. [ABSTRACT FROM AUTHOR]

Background: Shared decision-making is a key element of person-centred care and promoted as the favoured model in preference-sensitive decision-making. Limitations to implementation have been observed, and barriers and limitations, both generally and in the palliative setting, have been highlighted. More knowledge about the process of shared decision-making in palliative cancer care would assist in addressing these limitations. Aim: To identify and synthesise qualitative data on how people with cancer, informal carers and healthcare professionals experience and perceive shared decision-making in palliative cancer care. Design: A systematic review and metasynthesis of qualitative studies. We analysed data using inductive thematic analysis. Data sources: We searched five electronic databases (MEDLINE, EMBASE, PsycINFO, CINAHL and Scopus) from inception until June 2023, supplemented by backward searches. Results: We identified and included 23 studies, reported in 26 papers. Our analysis produced four analytical themes; (1) Overwhelming situation of 'no choice', (2) Processes vary depending on the timings and nature of the decisions involved, (3) Patient-physician dyad is central to decision-making, with surrounding support and (4) Level of involvement depends on interactions between individuals and systems. Conclusion: Shared decision-making in palliative cancer care is a complex process of many decisions in a challenging, multifaceted and evolving situation where equipoise and choice are limited. Implications for practice: Implementing shared decision-making in clinical practice requires (1) clarifying conceptual confusion, (2) including members of the interprofessional team in the shared decision-making process and (3) adapting the approach to the ambiguous, existential situations which arise in palliative cancer care. [ABSTRACT FROM AUTHOR]

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

OBJECTIVES: (1) Assess whether health-related social needs (HRSN)/caregiver mental health concerns (CMHC) disclosure rates differ when screening questions are administered on paper versus electronic tablet. (2) Evaluate whether changes in need identification alters referral rates to social work and our medical-legal partnership (MLP). METHODS: We conducted a retrospective review of HRSN/CMHC screening in publicly insured patients 0-18 years presenting for well-child visits in three primary care practices. Our primary outcome was HRSN/CMHC disclosure rate, comparing the proportion of positive HRSN/ CMHC screens during the 11 months before and after screening modality change. Generalized estimating equations and interrupted time series (ITS) were used to assess changes over time. Mediation analyses assessed the indirect effect of HRSN/CMHC disclosure during the electronic screening period on changes in referrals to social work/MLP. RESULTS: A total of 16,151 patients had paper-based HRSN/CMHC screens; 13,019 patients had electronic screens. Overall, 11% of paper-based screens identified ≥1 need, compared to 26% of electronic screens (p<0.001). All three practices saw an increase in disclosure rate after transition from paper to electronic screening (odds ratio [OR] range 1.54 to 4.24). Using ITS, two of three practices had significantly increased odds of need disclosure with electronic screens compared to paper (OR 3.0, 95% confidence interval [CI] 2.5, 3.6; and OR 1.7, 95%CI 1.2, 2.4). Increased HRSN/CMHC disclosure rates from transitioning to electronic screening mediated increased referrals to social work/MLP. CONCLUSIONS: Electronic screening was associated with an increased HRSN/CMHC disclosure rate compared to paper, which led to increased referrals to social work/MLP. [ABSTRACT FROM AUTHOR]

Background: In Germany, live-in migrant carers provide essential social, emotional and physical support to a growing number of community-dwelling people with dementia. However, opaque legal regulations and employment models as well as a lack of formal supervision for families employing live-in migrant carers contribute to the vulnerability of these already strained arrangements. This study analyses the family caregivers' perspective, their conceptualisations of good dementia live-in migrant care and conflicts that arise in live-in care arrangements. Methods: The study adopted a qualitative-explorative approach. We conducted focus groups with family caregivers (n = 15) to learn about their perspectives on and experiences with live-in care as a model of home-based dementia care. Due to the restrictions of the COVID-19 pandemic, data collection took place online, which enabled us to include participants from all over Germany in our sample. Data were analysed with qualitative content analysis. Results: In this paper, two main categories, Indicators of good live-in migrant care for people with dementia and perceived conflicts, are presented. We identified indicators applied by family caregivers to assess the quality of care provided by migrant live-in carers and its outcomes for the person with dementia. These relate primarily to interpersonal and emotional aspects and a person-centred attitude towards the person with dementia. Conflicts arise when the needs and personalities within the triad do not match, due to intransparent and unreliable work of and communication with the placement agencies, or permanent crisis as a result of the German model with alternating live-in carers. Conclusion: Our findings point to the complex dynamics and relationships within live-in care triads and support the theoretical assumption that taking into account the needs of all actors involved is essential for good and stable care arrangements. The conceptualisations of family caregivers of good dementia live-in migrant care offer starting points for a scientific as well as a social and health policy debate about the future regulation of this model of care. [ABSTRACT FROM AUTHOR]

This paper considers the ways that publicly funded developmental services for adults with developmental disabilities in southern Ontario are limited in how they support clients. This paper is informed by field research conducted in the summer of 2019, which was composed of semi-structured interviews, focus groups, and a policy review. Informed by parent advocates who are the main caregivers of their adult children labelled with intellectual and developmental disabilities, this paper claims that the administrative processes of the Ontario ministry that manages and funds adult disability services relate to broader exclusionary patterns among adults with developmental disabilities. I explore this claim by reviewing how common ableist assumptions of people with developmental disabilities are ingrained in the policies and administrative processes of these services. I contribute to ongoing discussions among Critical Disability Scholars of the ways that disability as a social category can be articulated outside of ableist assumptions. Informed by parent caregiver perspectives, this article outlines how the limitations of provincially funded disability services in Ontario, Canada cause significant challenge in the lives of those labelled with intellectual and developmental disabilities. One possible explanation for these limitations is that there is a disconnect between how the provincial government classifies who should receive immediate services and how many services, versus the actual need of those labelled with intellectual and developmental disabilities. The criteria for high supports, such as monthly funding, placement into a living facility, and the provincial assessment for determining a person's 'adaptive functioning' are rooted in problematic assumptions made of people labelled with intellectual and developmental disabilities. [ABSTRACT FROM AUTHOR]

Background: The life expectancy of people with a learning disability is increasing and with this comes a greater risk of developing dementia. Dementia poses new challenges for both family and formal learning disability carers as they try to support dementia's progressive nature and quality of life for their care recipient. This qualitative systematic review explores the evidence base of family and formal carers' experiences and needs of caring for someone with both a learning disability and dementia. Methods: Six electronic databases (PubMed, PsycINFO, Cochrane Library, Prospero, Scopus, CINAHL), were searched in May 2022, utilising a predefined search strategy. Thirteen papers fulfilled inclusion criteria and were included in in the review. Results: Thematic synthesis was used to explore and synthesise the qualitative findings of the studies. Four conceptual themes were identified following analysis: Knowledge and skills, Accessing support, Repercussions of dementia for carers, Influences of continuity of caring role. Conclusion: There are significant training and educational needs for all carers who support the dual diagnosis of dementia and learning disability. Differences between family and formal carers relate to the organisational support and process available to formal carers. Parity across services combined with sufficiently trained carers may support dementia diagnosis and improve quality of care provided. Further research is needed to address environmental, and economic barriers carers face to facilitate ageing in place for their care recipients. [ABSTRACT FROM AUTHOR]

Background: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long‐term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. Methods: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. Results: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high‐risk situations, leading to hypervigilance and paternalistic approaches to care. Conclusion: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden. Patient or Public Contribution: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write‐up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors. [ABSTRACT FROM AUTHOR]

Introduction: Parent carers of children with special educational needs or disabilities are at risk of poorer health and wellbeing outcomes because of the distinct and challenging circumstances they face. Evaluations of interventions promoting the health of parent carers should focus on measuring the aspects of health and wellbeing which are most relevant to this group. As part of a programme of research on parent carer‐focused interventions, this study aimed to understand which aspects of health and wellbeing are perceived by parent carers as most meaningful and important. Methods: A qualitative study using semistructured online interviews was conducted. A purposive sample of parent carers was interviewed about relevant health and wellbeing outcomes. Transcripts were analysed thematically. Results: Thirty parent carers were interviewed, 19 of whom had experienced a health‐promoting intervention, either as participants (n = 14) or facilitators (n = 5). Three main themes were identified: 'self, identity and beliefs'; 'social connections and support' and 'health‐promoting practices and outcomes.' Each theme encompassed the challenges participants faced, and the changes that helped them overcome these challenges. 'Self‐identity' challenges focused on the overwhelming nature of the parental care role and the emotional impact of this. Changes were brought about by developing a positive mindset, increasing confidence, and reconnecting with aspects of their identity which were important to them before they became parent carers. Challenges related to 'social connections' reflected parent carers' isolation. Change was brought about through increased peer support and peer interactions. Parent carers experienced challenges in terms of 'health‐promoting activities' because they lacked free time and experienced poor physical health. Changes were brought about by engagement in health‐promoting activities of various kinds. Conclusion: Parent carers view health and wellbeing in terms of overcoming the common challenges they face as a group. These challenges reflect the ways in which their physiological and psychological needs are often unmet. Researchers interested in measuring parent carer health and wellbeing should consider the specific challenges this group face, as well as theoretical frameworks which can make sense of these challenges, such as self‐determination theory. Patient or Public Contribution: Our team carries out patient and public involvement (PPI) through a Family Faculty group facilitated by a Family Involvement Co‐ordinator (A. McD.) who is herself a parent carer. A study‐specific PPI working group was established which included members of the Family Faculty. The PPI group advised on various aspects of the research as reported in the paper. The manuscript was co‐authored by the team's Family Involvement Co‐ordinator (A. McD.). [ABSTRACT FROM AUTHOR]

Aims: To elicit experiences of patients, family caregivers, and healthcare professionals in intermediate care units (IMCUs) in an academic medical centre in Baltimore, MD related to the challenges and intricacies of multimorbidity management to inform development of a multimorbidity symptom management toolkit. Design: Experience‐based co‐design. Methods: Between July and October 2021, patients aged 55 years and older with multimorbidity admitted to IMCUs at an academic medical centre in Baltimore, Maryland, USA were recruited and interviewed in person. Interdisciplinary healthcare professionals working in the IMCU were interviewed virtually. Participants were asked questions about their role in recognizing and treating symptoms, factors affecting the quality of life, symptom burden and trajectory over time, and strategies that have and have not worked for managing symptoms. An inductive thematic analysis approach was used for analysis. Results: Twenty‐three interviews were conducted: 9 patients, 2 family caregivers, and 12 healthcare professionals. Patients' mean age was 67.5 (±6.5) years, over half (n = 5) were Black or Hispanic, and the average number of comorbidities was 3.67. Five major themes that affect symptom management emerged: (1) the patient–provider relationship; (2) open and honest communication; (3) accessibility of resources during hospitalization and at discharge; (4) caregiver support, training, and education; and (5) care coordination and follow‐up care. Conclusion: Patients, caregivers, and healthcare professionals often have similar goals but different priorities for multimorbidity management. It is imperative to identify shared priorities and target holistic interventions that consider patient and caregiver experiences to improve outcomes. Implications for the Profession and/or Patient Care and Impact: This paper addresses the paucity of research related to the shared experience of disease trajectory and symptom management for people living with multimorbidity. We found that patients, caregivers, and healthcare professionals often have similar goals but different care and communication priorities. Understanding differing priorities will help better design interventions to support symptom management so people with multimorbidity can have the best possible quality of life. Reporting Method: We have adhered to the Consolidated Criteria for Reporting Qualitative Studies (COREQ) guidelines in our reporting. Patient or Public Contribution: This study has been designed and implemented with patient and public involvement throughout the process, including community advisory board engagement in the project proposal phase and interview guide development, and member checking in the data collection and analysis phases. The method we chose, experience‐based co‐design, emphasizes the importance of engaging members of a community to act as experts in their own life challenges. In the coming phases of the study, the public will be involved in developing and testing a new intervention, informed by these qualitative interviews and co‐design events, to support symptom management for people with multimorbidity. [ABSTRACT FROM AUTHOR]

Young carers face a variety of challenges at school. While schools can be vital places of support, the assistance they receive at school often seems selective and fails to consider the unique life situations of individual students. This paper examines the perspective of multiple actors in the student's school environment and explores how schools can develop comprehensive, sustainable support systems for young carers—systems that consider and involve as many actors as possible in the student's school environment. In a secondary analysis of two interview studies, we analyzed how young carers as well as their parents, teachers, and school counsellors perceived the school support the carers received. We then developed an integrated model that incorporates these differing perspectives. The model offers an approach for implementing low-threshold support for young carers within existing school structures in relation to their family situation and outlines conditions that can support both recognized and "invisible" young carers, as well as other students. [ABSTRACT FROM AUTHOR]

Family caregivers are vital to enabling people with dementia to live longer in their own homes. For these caregivers, chatting with clinicians—being listened to empathetically and receiving reassurance—can be seen as not incidental but important to supporting them. This paper considers and identifies the significance of this relational work for family carers by re-examining data originally collected to document caregivers' perspectives on quality in crisis response teams. This reveals that chatting, for family caregivers, comprises three related features: (i) that family caregivers by responding to a person's changing and sometimes challenging needs and behaviors inhabit a precarious equilibrium; (ii) that caregivers greatly appreciate 'chatting' with visiting clinicians; and (iii) that while caregivers appreciate these chats, they can be highly critical of the institutionalized character of a crisis response team's involvement with them. [ABSTRACT FROM AUTHOR]

Background: Systemic lupus erythematosus (SLE) is a life-threatening, chronic, autoimmune disease requiring long term subspecialty care due to its complex and chronic nature. Childhood-onset SLE (cSLE) is more severe than adult-onset, and the cSLE population in South Africa has been reported to have an even higher risk than patients elsewhere. Therefore, it is critical to promptly diagnose, treat, and manage cSLE. In this paper, we aim to describe and evaluate barriers and enablers of appropriate long-term care of cSLE South Africa from the perspective of caregivers (parents or family members). Methods: Caregivers (n = 22) were recruited through pediatric and adult rheumatology clinics. Individuals were eligible if they cared for youth (≤ 19 years) who were diagnosed with cSLE and satisfied at least four of the eleven ACR SLE classification criteria. Individual in-depth, semi-structured interviews were conducted between January 2014 and December 2014, and explored barriers to and facilitators of ongoing chronic care for cSLE. Data were analyzed using applied thematic analysis. Results: Four barriers to chronic care engagement and retention were identified: knowledge gap, financial burdens, social stigma of SLE, and complexity of the South African medical system. Additionally, we found three facilitators: patient and caregiver education, robust support system for the caregiver, and financial support for the caregiver and patient. Conclusion: These findings highlight multiple, intersecting barriers to routine longitudinal care for cSLE in South Africa and suggest there might be a group of diagnosed children who don't receive follow-up care and are subject to loss to follow-up. cSLE requires ongoing treatment and care; thus, the different barriers may interact and compound over time with each follow-up visit. South African cSLE patients are at high risk for poor outcomes. South African care teams should work to overcome these barriers and place attention on the facilitators to improve care retention for these patients and create a model for other less resourced settings. [ABSTRACT FROM AUTHOR]

Aim: Access to timely treatment is key to early intervention in psychosis. Despite this, barriers to treatment exist. In this review, we aimed to understand the structural barriers that patients and caregivers face in help‐seeking for first‐episode psychosis, and the recommendations provided to address these. Methods: We conducted a systematic review (PROSPERO: CRD42021274609) of qualitative studies reporting structural barriers to help‐seeking from the patient or caregiver perspective. Searches were performed in September 2023, restricted to studies published from 2001. Study quality was appraised using Critical Appraisal Skills Programme. Data were analysed using thematic synthesis. Results: Nineteen papers from 11 countries were included. Across all papers, participants reported experiencing structural barriers to receiving healthcare. For many patients and caregivers, the process of accessing healthcare is complex. Access requires knowledge and resources from parents, caregivers and healthcare providers, yet too often there is a misalignment between patients' needs and service resources. Expertise amongst healthcare providers vary and some patients and caregivers experience negative encounters in healthcare. Patients highlighted earlier caregiver involvement and greater peer support as potential routes for improvement. Conclusion: Patients and caregivers face multiple structural barriers, with legislative practices that discourage family involvement, and healthcare and transport costs found to be particularly problematic. Understanding these barriers can facilitate the co‐design of both new and existing services to provide easier access for patients and caregivers. Further research is needed focusing not only on the perspectives of patients and caregivers who have accessed professional help but also crucially on those who have not. [ABSTRACT FROM AUTHOR]

Background: Dying well at home usually requires the help and assistance of an informal caregiver. This role is usually unpaid, wide‐ranging and oftentimes demanding. From diagnosis to death of a loved one, informal caregivers can experience one and frequently numerous transitions, however, little is known about this process. The purpose of this scoping review is to chart, explore and understand caregivers' experiences of transitioning when providing end‐of‐life care. A preliminary search of the literature indicated a paucity of research highlighting a notable absence of caregiver's perspectives and acknowledgements of the support they need to ensure successful transitions during this time. Consequently, this review has the potential to make a valuable contribution to the literature. Methods: Arksey and O'Malley's (2005) framework, further enhanced by Levac et al. (2010) and Peters et al. (2020) was used to conduct this scoping review. The Extension for Scoping Reviews (PRISMA‐ScR) guided reporting. A systematic search of the databases PUBMED, PsychINFO, CINAHL, EMBASE, and Web of Science and a selection of grey literature was undertaken from the year 1990 to date by two researchers. Titles and abstracts of the literature identified were screened and finally, a narrative synthesis of 11 articles was undertaken to answer the following research question: What is known from the literature about informal caregivers' transitions when caring for a dying person in the home? Conclusions: Current knowledge on this topic is limited; however, from this review, two main themes were identified: 'Challenges arising during transitioning' with subthemes of burden of care and fading away. The second theme 'Coping strategies' comprised subthemes of meaning‐making, seeking normality and hope. This evidence may support the development of transitional care interventions in the future and improve patient and caregiver outcome measures and experiences to inform a larger research study exploring this phenomenon. Patient or Public Contribution: N/A as this is a Scoping Review. What this paper contributes to the wider global community: An understanding of the experiences of transitioning when caring for a loved one dying at home could help mitigate challenges informal caregivers face when providing end‐of‐life care in the home.While informal caregivers are crucial to support people who want to die at home, the role is often invisible and family carers need support and recognition to reduce the burden of care and challenges they experience as they transition in their role. [ABSTRACT FROM AUTHOR]

Literature suggests that palliative care professionals and informal caregivers could be at risk of side effects of active participation in care. Therefore, different methods of support that can be offered to carers should be sought. Coaching is an intervention that facilitates another person to learn, grow and take responsibility for the level to which results are achieved. There are arguments which indicate the possibility and need to use coaching interventions to support nurses in their development and daily practice. Moreover, coaching can be used to implement interventions to improve informal caregivers’ knowledge and skills, as well as to increase their sense of self-efficacy and psychological resilience. Consequently, this paper is aimed at introducing coaching as a method for enhancing work and well-being among formal and informal carers, especially in palliative care. Coaching might be an appropriate approach in the context of palliative care. Regarding end-of-life care and its complexity, it is worth considering implementing it as a part of an interdisciplinary program. Consequently, it would be tailored to caregivers’ needs. [ABSTRACT FROM AUTHOR]

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]

Caregivers, i.e., parents, grandparents, and anyone caring for children, make up the majority of users in many urban centers around the world, including in China. Yet urban design and planning rarely consider specific needs of caregivers. This can result in a negative perception among people that cities are unfriendly places to raise children. Such negative perception is among the major contributors to the aging population problem, as parents and parents-to-be feel reluctant to give birth and raise more than one or even any children. Using an interdisciplinary approach, i.e., cognitive science, psychology, behavioral economics, and urban studies, this paper examines a new city model of "parent-friendly city," where urban design serves the needs of caregivers, effectively creating a perception that cities are friendly places for raising children. First, we identify that caregivers' needs are characterized by two major factors: (1) provision: parents want to provide for their children, such as providing places for play and learning, and (2) restoration: parents want to restore things that they lack due to childcare responsibilities, such as lack of rest and interaction with other adults. Second, we offer cognitive-based design principles that can work powerfully and effectively to fill both needs. Third, using real case studies from cities in China and around the world, we illustrate how these design principles work, even reversing caregivers' perception from negative to positive. Ultimately, thoughtful urban design can support parents in raising children, making cities into partners in parenthood. [ABSTRACT FROM AUTHOR]

Little is known about the experiences of informal family care-giving for persons with ADRD in the context of Arab and Muslim communities. This paper offers fresh insight into the less-studied private sphere of the home, showing how families respond to the onset and long-term care of persons with Alzheimer's disease and related dementias (ADRD). It considers the extent to which sociocultural and religious influences are appropriated by family care-givers as coping mechanisms and motivators for care. Drawing upon interviews with 32 family care-givers for older persons living with ADRD in Qatar, findings reveal the intersectionality of the care-giving experience with various sociocultural, religious and emotional influences through seven emergent themes: (a) reasons and motivations for care-giving; (b) role of the extended family; (c) socio-demographic attributes of care-givers, their allocated responsibilities and how these intersect; (d) socio-religious attitudes towards care-giving of older persons; (e) social stigma; (f) personal knowledge of ADRD; and (g) coping mechanisms. The paper is concluded with key implications of these sociocultural insights for theory, policy and practice, which could inform Qatar's health and social care provision sector as well as other Arab and Muslim communities that share similar cultural and religious belief systems. [ABSTRACT FROM AUTHOR]

Purpose: Research on the concept of expressed emotion (EE) has expanded in recent years but its role in dementia still requires elucidation. Understanding the role of EE in the dementia context could help in the development of appropriate interventions. Method: The current review synthesized relevant literature to investigate the prevalence and correlates of EE status in families of people with dementia. A comprehensive search of four databases from inception to 2022 produced 2,683 papers; 18 studies met inclusion criteria. Results: The use of EE criteria differed not only across cultural contexts, but even within the same cultural context. Overall, the prevalence of EE in families with dementia compared with other psychiatric conditions was not high. Conclusion: Specific changes in EE over time remain to be explored, and findings emphasize the need to carefully discriminate High EE status based on the cultural background of family members with dementia. [Journal of Gerontological Nursing, 50(2), 17–25.] [ABSTRACT FROM AUTHOR]

Aims and Objective: To summarize evidence from systematic reviews (SRs)/meta‐analyses (MAs) regarding the impact of dyadic interventions delivered to both members of a cancer dyad, including a cancer patient and caregiver (e.g. family caregiver, intimate partner). Design: This overview of SRs was conducted in accordance with the preferred reporting items for overviews of reviews statement. Methods: A comprehensive search of multiple databases, including PubMed, Cochrane Library, Embase, CINAHL, Web of Science, China National Knowledge Infrastructure and Wan Fang. The methodological and reporting quality of SRs and MAs was assessed using the Assessing the Methodological Quality of Systematic Reviews 2. The quality of the included SRs/MAs was evaluated using the Grades of Recommendations, Assessment, Development and Evaluation approach. Results: Eighteen SRs/MAs undertook quantitative synthesis to assess the impact of dyadic interventions on cancer dyads. Both the credibility of the SRs/MAs and the evidence quality of the outcome measures were below satisfactory standards. Prior SRs/MAs revealed several limitations such as lack of pre‐published protocols or research objectives, failure to report excluded studies and insufficient details on funding sources for individual studies. Conclusions: Dyadic interventions may prove advantageous for the physical health and dyadic adjustment of cancer dyads. Nevertheless, the reported results of dyadic interventions on the psychological health of patient–caregiver dyads affected by cancer are inconsistent. Thus, rigorous and comprehensive studies are requisite to establish reliable evidence for conclusive determinations. Relevance to Clinical Practice: The findings of this overview can guide healthcare practitioners when considering the use of dyadic interventions for cancer dyads. Moreover, these findings have the potential to enhance the integration of these approaches into clinical practice. Patient or Public Contribution: Our paper presents an overview of systematic reviews, and therefore, such specific details may not be relevant to our study. [ABSTRACT FROM AUTHOR]

Background: The risk of developing chronic postsurgical pain (CPSP) in youth is related to psychological factors, including preoperative anxiety, depression, patient/caregiver pain catastrophizing, and poor self-efficacy in managing pain. While interventions exist to address these factors, they are generally brief and educational in nature. The current paper details patient partner feedback on the development of a psychologist-delivered perioperative psychological program (PPP) designed to identify and target psychological risk factors for CPSP and improve self-efficacy in managing pain. Methods: Qualitative interviews were conducted with two patients and their caregivers to discuss their surgical and pain management experience and to advise on components of the PPP. Results: Reflexive thematic analysis of interviews generated the following themes, which were incorporated into the content and implementation of the PPP: caregiver involvement, psychological and physical strategies for pain management, biopsychosocial pain education, intervention structure, and supporting materials. Conclusions: The development of a novel psychologist-led PPP is a promising approach to mitigate mental health risks associated with pediatric CPSP and potentially boost postoperative outcomes and family wellbeing. Integrating patient partner feedback ensures that the PPP is relevant, acceptable, and aligned with the needs and preferences of the patients it is designed to serve. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to analyze how psychosocial support influences caring activities toward indigenous older adults. Design/methodology/approach: A descriptive study with the participation of 229 informal indigenous caregivers. The study considered both sociodemographic and medical variables. It used the mini-mental test to determine the cognitive level in the elderly. It applied the Yesavage and Zarit scales to establish depressive symptomatology and caregiver burden. Finally, the study used the MOS psychosocial support and Apgar screening questionnaires to assess the psychosocial dimension and the patient's family functional state, respectively. Findings: The study observed a low caregiver burden effect using the MOS questionnaire. This may be explained due to variability in the Zarit Scale Score product of other variables like years of care (−0.17 and −0.28), depressive symptoms (0.16 and 0.18), cognitive level (mini-mental) (−0.13 and −0.14) and comorbidity (0.26 and −0.27). The study obtained an incidence between (−0.02 and −0.12) when including all assessed dimensions into the model. The instrumental dimension in the social support questionnaire obtained the highest score. Originality/value: Protective factors prevail in the group of indigenous caregivers allowing this activity to not trigger overload. Yet, variables such as the female gender, some comorbidities and the presence of depressive symptoms could be potential variables for dysfunction in this occupational role. [ABSTRACT FROM AUTHOR]

Copyright of Folia Pomeranae Universitatis Technologiae Stetinensis Agricultura Alimentaria Piscaria et Zootechnica is the property of West Pomeranian University of Technology in Szczecin and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Purpose: People living with dementia are often at increased risk of becoming socially disconnected due to dementia-related challenges. In recent years, digital technology has been designed to help address the social health of people living with dementia and provide opportunities to promote or maintain their social connectedness. This paper presents the findings from phase two of a participatory action research project, which explored people living with dementia and their caregiver's experiences and perceptions of social connectedness and the potential role of Virtual Reality (VR) in promoting or maintaining same. Materials and Methods: People living with dementia (n = 8) and their informal caregivers (n = 8) participated in an individual, 1:1 online interview. Data analysis was guided by reflexive thematic analysis. Results: The findings presented four themes: social connectedness: lived experiences and insights, facilitating social connectedness, barriers to social connectedness and the potential of multi-user VR for social connectedness. People living with dementia experienced a range of personal, community and societal connectedness. Facilitators of social connectedness included supportive, non-judgemental, and reciprocal relationships, technology adoption, and personal and contextual facilitators. Dementia-related difficulties and periods of disruption or change were considered barriers to social connectedness. Multi-user VR was perceived as useful for promoting and maintaining social connectedness. Conclusions: The perceived usefulness of multi-user VR for social connectedness indicates its potential for use with this population. Understanding the lived experiences, barriers, and facilitators of social connectedness will assist researchers and the human-computer interaction community to inform the design of future multi-user VR for social connectedness outcomes with people living with dementia and their caregivers. IMPLICATIONS FOR REHABILITATION: People living with dementia and their caregivers consider social connectedness a vital aspect of living well with dementia. People living with dementia experience social connectedness across personal, community and societal domains. Supportive, non-judgemental or reciprocal relationships, fostering technology, and personal and contextual factors facilitate social connectedness for people living with dementia. Dementia-related barriers and periods of disruption and change can negatively impact the social connectedness of people living with dementia. People living with dementia and their caregivers consider multi-user virtual reality a promising technology to promote and maintain their social connectedness. [ABSTRACT FROM AUTHOR]

Objectives: This study comprises a synthesis of published qualitative studies from developed countries on the perspectives of carers regarding the oral hygiene toothbrushing practices of preschool children, through the lens of social practice theory. Methods: A search of the following electronic databases was conducted for all available years: MEDLINE, EMBASE and Global Health using the Ovid platform; Dentistry & Oral Sciences Source (DOSS), Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Scopus. Included qualitative studies reported primary caregivers' perceptions of oral hygiene practices (focusing on toothbrushing) in preschool children (0–5 years old) in developed countries. A thematic synthesis of the qualitative findings was undertaken for the results of each study. Results: Eleven articles were included in this meta‐synthesis. The focus of this paper was toothbrushing practices. A conceptual map of toothbrushing as a social practice was developed. Key findings included practice elements (meanings, competences, and materials), spatial and temporal aspects, and barriers and facilitators to performance. Conclusions: The application of a social practice lens to published qualitative research on the oral hygiene of preschool children provided insights into the meanings and competences related to toothbrushing, as perceived by primary caregivers. However, it also revealed limited information on material, spatial and temporal aspects of toothbrushing practices, indicating the importance of considering social practice theory as a framework in future research to address this gap. Furthermore, exploring toothbrushing in connection with related social practices has the potential to increase understanding of factors influencing oral health in preschool children. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic has brought about disruptions in healthcare for adults with intellectual and developmental disabilities. There is a need to explore ways to promote proactive healthcare and better prepare individuals for healthcare encounters. Methods: A co‐designed tool, the COVID Check‐in Tool, was introduced as part of a virtual health education programme to encourage proactive healthcare. Implementation of this Health Check‐in was evaluated with 36 adults with intellectual and developmental disabilities and 96 family caregivers who completed the programme using surveys, structured interviews and focus groups. Findings: Forty‐four percent of participants engaged in the Health Check‐in process, resulting in many reported benefits for those who participated. However, there were also barriers to initiating the Check‐in, along with challenges using the COVID Check‐in Tool, according to both the adults with disabilities who were interviewed and the family caregivers. Conclusions: The study underscores the importance of considering ways to integrate tools into routine healthcare practices, to facilitate improved healthcare delivery for people with intellectual and developmental disabilities during pandemic recovery efforts. As well, involving people with lived experience in the development and implementation of healthcare resources is critical. Accessible Summary: Our team worked together to make a tool that would help people with intellectual and developmental disabilities talk to their doctor about health problems after not seeing them a lot because of the pandemic. We called this tool the 'COVID Check‐in'.Then people from our team taught online health courses about how to use the COVID Check‐in Tool and other health topics.After the courses were over, we asked 36 adults with intellectual and developmental disabilities and 96 family caregivers if they had a Health Check‐in with their doctor and how it went, or what problems they had with it.Almost half of the people who took the courses had a Health Check‐in and most of the people thought it was helpful. Some people did not do it or did it but had problems with it.We end the paper with some ideas of how to make it easier to check in with the doctor and why it is important to include people with disabilities and family caregivers when making healthcare tools. [ABSTRACT FROM AUTHOR]

Background and Objectives Amyloid positron emission tomography scans can enhance the accuracy of dementia diagnoses. However, the perspectives and experiences of people with cognitive impairment and their care partners undergoing an amyloid scan are less well understood. Therefore, this review aimed to identify and summarize qualitative studies exploring patient and care partner experiences of undergoing an amyloid scan. Research Design and Methods We searched Embase, MEDLINE, and PsychInfo in March 2024. Articles were screened for inclusion by 2 reviewers and critically appraised using the Joanna Briggs Institute Critical Appraisal Tool for Qualitative Studies. Data from the included studies were synthesized using thematic synthesis. Results We identified 10 papers from 6 studies. We identified 4 themes: (1) motivations for undergoing an amyloid scan, (2) experiences of receiving the result, (3) emotional responses to the result, and (4) actions in light of the scan result. Participants reported undergoing the scan to determine the cause of cognitive impairment. They described the information gained from the scan as helpful but struggled to recall the correct terminology or implications of the scan. Emotional responses to the scan varied depending on the scan result. In light of the scan result, the most common action was making advanced plans; however, this was mainly discussed among participants with elevated amyloid. Discussions and Implications Amyloid scans can provide useful and actionable information. However, learning the scan result could be distressing. Future research is needed to balance the potential benefits and harms of amyloid scans. [ABSTRACT FROM AUTHOR]

Deborah Robertson provides an overview of recently published articles that may be of interest to non-medical prescribers. Should you wish to look at any of the papers in more detail, a full reference is provided [ABSTRACT FROM AUTHOR]

We comment on Dr. Terman's considerations on the moral justification of ceasing assisted feeding and hydration for people with advanced dementia. The core idea of his paper is that an advance directive can solve future dilemmas regarding assisted feeding. We submit that this static instrument is unfit for the complex and dynamic nature of assessing how to deal with refusals to eat, in particular for people with dementia. It overvalues the past in relation to the present situation and leaves no room for the possibility of changing wishes. Moreover, the perspectives of professional caregivers and families are not addressed because the focus is entirely on individual autonomy in early dementia. Multiple perspectives should be considered in interpreting directives and the actual situation in light of the patient's view of life in order to realistically account for what is morally justifiable in care in advanced dementia. [ABSTRACT FROM AUTHOR]

Objectives: For many people with dementia and unpaid carers, using technology for care and support has become essential. Rapid proliferation of technology highlights the need to understand digital access to health and social care services for dementia. This mixed‐methods systematic review aims to explore digital access to health and social care services for dementia, from the perspective of people with dementia and unpaid carers. Methods: Nine electronic databases were searched in May 2023 for qualitative, quantitative, or mixed‐method studies, published in English or German, focused on experiences of using technology‐delivered health and social care services for people with dementia and unpaid carers. After removal of duplicates and screening, 44 empirical papers were included. Results: From the 44 studies, findings were grouped into five categories, highlighting experiences for people with dementia and unpaid carers: (1) Adapting to technology, (2) Inequalities and variations in outcomes, (3) Impact on caring, (4) Impact on health, and (5) Impact on relationships. Proliferation of technology in care access emphasised the need for quick adaptation to technology and examination of its impact. The impact of such service delivery has evidenced mixed findings. There were improvements in the health and wellbeing of people with dementia and unpaid carers, and benefits for their dyadic relationship. However, using technology for health and social care access is not always possible and is often reliant on unpaid carers for support. Lower tech‐literacy, lack of equipment or money to buy equipment and poor internet connection can impact the potential for positive outcomes. Conclusions: Technology can bring great benefits: social inclusion, improved service access and care. However, using technology in service delivery in dementia needs careful thought. Professionals and service providers need to be cognizant of the complex nature of dementia, and the benefits and challenges of hybrid service delivery. Key points: Evidence emphasises benefits and challenges to the availability, implementation, use, of technology in health and social care access in dementia.Though there are issues, technology can help improve quality of life for people with dementia, can support carers to care, and facilitate positive relationships between unpaid carers and people with dementia.Proliferation of technology for care access was expedited during COVID‐19, but has not been equally rolled out, making remote and disadvantaged groups less well‐served.A hybrid delivery of services in which people are given choice of delivery method, and are supported in accessing and using technology, will better serve people with dementia and unpaid carers. [ABSTRACT FROM AUTHOR]

This paper outlines my experience of caring for my partner who experienced a traumatic brain injury (TBI). I discuss my experience throughout this journey, considering the importance of engaging family members and carers in the rehabilitation journey, and offer recommendations for rehabilitation services. [ABSTRACT FROM AUTHOR]

As policymakers globally recognize aging in place as the preferred option for most adults, there is a growing need to supplement family or informal caregiving for frail older adults with formal homecare services, particularly for those who require 24/7 care due to significant physical and/or cognitive impairment. The core objective of this qualitative study was to explore family members' experiences in employing live-in care workers, particularly the nature of their engagement and the quality of their relationships with these care workers. Our analysis of semi-structured interviews with 35 family caregivers revealed four themes: 1) challenges in acquiring support and developing dependency; 2) negotiation of roles, responsibilities, and moral dilemmas; 3) shifting emotions between trust and suspicion; and 4) role confusion, expectations, and disappointments. The study suggests that families might benefit from formal guidance regarding fostering and maintaining positive relationships in the homecare environment. This paper provides nuanced knowledge that may inform the development of such interventions. [ABSTRACT FROM AUTHOR]

This paper explores the ways in which health care professionals, family carers, and older persons expressed attitudes and opinions on using Paro, a social robot designed to stimulate patients with dementia. Thereafter, we critically evaluate existing prejudicial views toward Paro users to provide recommendations for its future use. Using an exploratory qualitative interview method, we recruited a total of 67 participants in Switzerland. They included 23 care professionals, 17 family carers, and 27 older persons. Data obtained were analyzed thematically. Study findings present general agreement that Paro is an appealing and beneficial social robot, but it is not a tool that everyone feels comfortable with. Because it is perceived as "child play," it would be demeaning for competent adults to play with such things. Consequently, Paro is appropriate only for persons with dementia. These findings brought forth ethical concerns about deception, infantilization, and respecting older persons' dignity. The idea of who is an appropriate Paro user led to our discussions on predicting future Paro users. The meaning of using social robotics in nursing homes can be conditioned by a rigid interpretation of adulthood and playful behavior. To protect future selves when one is living with dementia from prejudices, it may be useful for older persons and their loved ones to plan their future care situations to ensure that they are treated in accordance with their delineated decisions. [ABSTRACT FROM AUTHOR]

This paper provides insights into the experiences of children with disabilities in an Ethiopian context during prolonged school closures due to the COVID-19 pandemic. Drawing on data gathered through telephone surveys from parents of children with disabilities who had been attending school prior to closures and teachers working in different educational settings, we discuss children's learning journeys during closures, motivations to return to school and the implications of this on current educational reform efforts in Ethiopia. Our findings highlight the significant merits of including children with disabilities explicitly in wider education reform efforts; the many positive gains seen in parental desires to send their child back to school; and the need to recognize and strengthen the role of schools as spaces for promoting children's socio-emotional well-being. Schooling of children with disabilities in Ethiopia was significantly impacted due to the lack of accessible learning materials available at home and in schools Caregivers expressed that returning to school was a strong priority for their child with disabilities Teachers and caregivers noted significant negative impact of closures on children's social and emotional well-being, with many reporting heightened feelings of sadness, loneliness, isolation, and diminished interest in learning and playing among their children. Caregivers and teachers felt that more could be done to support families and schools during such times, especially with better allocation of resources. [ABSTRACT FROM AUTHOR]

Given that the number of children and young people needing care keeps rising and fewer people are becoming foster carers, efforts to support carers and workers in foster caring are essential. This paper considers the experiences of carers and foster care agency workers involved in Australia's piloting of the Mockingbird Family. With a view understanding experience, data were collected via focus groups with carers and agency workers (n = 20) involved in piloting, implementation and evaluation. Deductive analysis applied the theory of experience to generate understanding of experience, as both intrinsic and extrinsic dimensions to capture strengths in the Mockingbird Family's foster caring networks. These dimensions of experience included collective passions of carers and workers; experiential change over time; collective experiences as a moving force; and experiences as transformational. Understanding of experience associated with the perceived strengths of the Mockingbird Family, including strategies to promote strong professional relationships between carers and workers, is an important element in strengthening environments of children and young people in care. Safe and stable environments are crucial for wellbeing. [ABSTRACT FROM AUTHOR]

Home has become established as the preferred place of death within health policy and practice in the UK and internationally. However, growing awareness of the structured inequalities underpinning end-of-life care and the challenges for family members undertaking care at home raise questions about the nature of patient and public preferences and priorities regarding place of death and the feasibility of home management of the complex care needs at the end-of-life. This paper presents findings from a qualitative study of 12 patients' and 34 bereaved family caregivers' perspectives and priorities regarding place of death. Participants expressed complex and nuanced accounts in which place of death was not afforded an overarching priority. The study findings point to public pragmatism and flexibility in relation to place of death, and the misalignment of current policy with public priorities that are predominantly for comfort and companionship at the end-of-life, regardless of place. [ABSTRACT FROM AUTHOR]

This paper describes the Wellness in Chronic Care (WCC) model, an innovative integrative clinical intervention method aimed at helping social workers manage the care of patients living with chronic illnesses and their families. The goal is to propose appropriate clinical responses to the changing reality of the health system. This new reality poses new challenges that require caregivers (social work practitioners and family members) to develop suitable skills and expertise. The intervention method we developed offers a new paradigm that entails partnership and the need to assume responsibility in decision-making while coping with the illness over time. The intervention provides practical tools and methods for coping and managing the illness. These factors have contributed to building a specifically tailored intervention program for patient and family care to achieve an effective and meaningful wellbeing. An assessment of the training program of the intervention model and its implementation is presented. The model was found to be essential yet some found it difficult to make the needed changes. [ABSTRACT FROM AUTHOR]