'I think both of us drew strength from it': qualitative reflections from next of kin following the death and post-mortem brain donation of a loved one with brain cancer.

Background: Glioblastoma, a high-grade primary brain cancer, has a median survival of approximately 14 months. Post-mortem brain donation provides insight to pathogenesis along with spatial and temporal heterogeneity. Post-mortem brain biobanking programs are increasing in number and the need to understand and improve the associated human experience is pressing. This study aims to qualitatively explore the experiences of next of kin (NOK) following the death and brain donation of a loved one and to understand the impact such programs have on NOK carers. Method: We interviewed 29 NOK following the death of their loved one and subsequent brain donation. Thematic analysis was conducted on the transcribed, qualitative interviews. Results: Four themes were identified; (1) Brain donation is a straightforward decision grounded in altruism and pragmatism; (2) Supporting donors is a source of comfort, pride and empowerment; (3) Brain donation can provide meaning for suffering and tragedy and (4) Perceptions of procedures and processes when supporting a loved one to donate. Insights into areas for improvement, for example transporting donors following a home death and the role of the body bag were also noted. Conclusion: Supporting a loved one to donate their brain can be a positive experience providing a source of hope, empowerment and purpose for NOK. Data indicating areas for consideration are broadly relevant for improving the delivery of brain donation programs for future donors and their loved ones.

Understanding how loved ones feel about someone close to them donating their brain to research after their death from brain cancer The act of donating brain tissue after death from brain cancer is a huge gift to medical research and may have an impact on the ability of the scientific community to improve outcomes for people diagnosed with brain cancers. While we understand how valuable these donations are for research, we need more work to understand how these donations impact the people who donate and those who love and support them. This paper explores the experiences of people who have lost someone to brain cancer who then went on to donate their brain tissue after their death. Through the use of interviews, it explores the impact that the donation has on a loved one or next of kin from providing a source of comfort, empowerment, pride or an alternative to 'senseless' suffering and tragedy. It also provides areas that should be considered by people who are facilitating brain donations to ensure that any potential, harm or upset can be minimized.

Barriers and facilitators when implementing midwifery continuity of carer: a narrative analysis of the international literature.

BACKGROUND: Midwifery continuity of carer (MCoC) is a model of care in which the same midwife or small team of midwives supports women throughout pregnancy, birth and the postnatal period. The model has been prioritised by policy makers in a number of high-income countries, but widespread implementation and sustainability has proved challenging. METHODS: In this narrative review and synthesis of the global literature on the implementation and sustainability of midwifery continuity of carer, we identify barriers to, and facilitators of, this model of delivering maternity care. By mapping existing research evidence onto the Consolidated Framework for Implementation Research (CFIR), we identify factors for organisations to consider when planning and implementing midwifery continuity of carer as well as gaps in the current research evidence. RESULTS: Analysing international evidence using the CFIR shows that evidence around midwifery continuity of carer implementation is patchy and fragmented, and that the impetus for change is not critically examined. Existing literature pays insufficient attention to core aspects of the innovation such as the centrality of on call working arrangements and alignment with the professional values of midwifery. There is also limited attention to the political and structural contexts into which midwifery continuity of carer is introduced. CONCLUSIONS: By synthesizing international research evidence with the CFIR, we identify factors for organisations to consider when planning and implementing midwifery continuity of carer. We also call for more systematic and contextual evidence to aid understanding of the implementation or non-implementation of midwifery continuity of carer. Existing evidence should be critically evaluated and used more cautiously in support of claims about the model of care and its implementation, especially when implementation is occurring in different settings and contexts to the research being cited.

Understanding the impact of distance and disadvantage on lung cancer care and outcomes: a study protocol.

BACKGROUND: Lung cancer is the third most common cancer in the UK and the leading cause of cancer mortality globally. NHS England guidance for optimum lung cancer care recommends management and treatment by a specialist team, with experts concentrated in one place, providing access to specialised diagnostic and treatment facilities. However, the complex and rapidly evolving diagnostic and treatment pathways for lung cancer, together with workforce limitations, make achieving this challenging. This place-based, behavioural science-informed qualitative study aims to explore how person-related characteristics interact with a person's location relative to specialist services to impact their engagement with the optimal lung pathway, and to compare and contrast experiences in rural, coastal, and urban communities. This study also aims to generate translatable evidence to inform the evidence-based design of a patient engagement intervention to improve lung cancer patients' and informal carers' participation in and experience of the lung cancer care pathway. METHODS: A qualitative cross-sectional interview study with people diagnosed with lung cancer < 6 months before recruitment (in receipt of surgery, radical radiotherapy, or living with advanced disease) and their informal carers. Participants will be recruited purposively from Barts Health NHS Trust and United Lincolnshire Hospitals NHS Trusts to ensure a diverse sample across urban and rural settings. Semi-structured interviews will explore factors affecting individuals' capability, opportunity, and motivation to engage with their recommended diagnostic and treatment pathway. A framework approach, informed by the COM-B model, will be used to thematically analyse facilitators and barriers to patient engagement. DISCUSSION: The study aligns with the current policy priority to ensure that people with cancer, no matter where they live, can access the best quality treatments and care. The evidence generated will be used to ensure that lung cancer services are developed to meet the needs of rural, coastal, and urban communities. The findings will inform the development of an intervention to support patient engagement with their recommended lung cancer pathway. PROTOCOL REGISTRATION: The study received NHS Research Ethics Committee (Ref: 23/SC/0255) and NHS Health Research Authority (IRAS ID 328531) approval on 04/08/2023. The study was prospectively registered on Open Science Framework (16/10/2023; https://osf.io/njq48 ).

Enabling decision-making: what assists people with motor neurone disease when they consider gastrostomy insertion?

PURPOSE: This study explores the views of people living with Motor Neurone Disease (MND) when they consider Percutaneous Endoscopic Gastrostomy (PEG) insertion, to understand their priorities and how their decisions were informed or supported. MATERIALS AND METHODS: The study took place in single multidisciplinary specialised MND clinic in New South Wales, Australia. Nine people with MND (5 male and 4 female; age range 52-73 years; disease duration 6-99 months) who were considering, or had recently undergone PEG insertion, participated. Semi-structured interviews were conducted with participants to examine individual's experience of decision-making about PEG. The data were synthesised and analysed thematically. RESULTS: Three main themes and two sub-themes captured participant views on their decision-making. The first, "What matters most to me," comprised optimising quality of life and maintaining family membership. The second theme explored "Understanding PEG and the clinical pathway." The third theme was "Thoughts on using a decision aid." CONCLUSIONS: This study provides a foundation for future studies examining the longer-term outcomes of accepting, delaying or declining PEG. Insights from this study may be applicable to decision-making for any aspect of MND care where the outcomes or benefits are uncertain.

People living with Motor Neurone Disease (MND) have complex and individual reasons for accepting or declining Percutaneous Endoscopic Gastrostomy (PEG).The quality of communication between people with MND and healthcare providers may be improved by a shared understanding of how people with MND view quality of life and carer burden in their own circumstances.Enhanced communication for informed choice and patient-centred decision-making have potential to reduce decision regret and support care pathways for those who decline PEG.

Tips for success, managing the paediatric patient in radiology.

Paediatric radiology is a fascinating and diverse field of medicine with many opportunities to gain expertise in a range of imaging modalities and body areas. Working with children makes imaging both rewarding and challenging, due to the wide range of patient ages encountered and the inherent variation in developmental needs. This requires a patient-focussed approach to manage their anxiety and ensure cooperation of the patient and their carers. Several approaches to dealing with children have been developed including recognising individual needs, empathising with the child and carers, and involving the use of play and a range of age-relevant preparation materials. All of these make the radiology imaging environment and encounter a more effective and collaborative process. The purpose of this manuscript is to present a practical guide to overcoming these challenges, by making the child the focus of their radiological examination.

Telebehavioral Health for Caregivers of Children With Behavioral Health Needs to Address Caregiver Strain: Cohort Study.

BACKGROUND: Behavioral health conditions among children have worsened over the past decade. Caregivers for children with behavioral health conditions are at risk for two types of caregiver strain: (1) an objective strain, that results directly from the child's condition and (2) subjective strain, that arises from the caregiver's feelings regarding these events. OBJECTIVE: This study aimed to evaluate the impact of a technology-enabled pediatric and family behavioral health service on caregivers' strain among a commercially insured population. We also explore the common symptom clusters of caregiver strain to better understand the caregiver presentation to inform future care planning. METHODS: We examined changes in caregiver strain using the Caregiver Strain Questionnaire-Short Form 7 over the course of their child's web-based behavioral health care between 2021 and 2023 using a pre-post study design. Common caregiver strain symptom clusters were identified using Ward hierarchical agglomerative clustering. RESULTS: The majority of children were White 60.8% (1002/1647), female 53.6% (882/1647), and aged between 5 and 9 years (33.7%, 555/1647). Families fall broadly into 4 groups based on what drives caregiver strain the most, namely those experiencing (1) disrupted family relationships and time interruption, (2) missed work, (3) worried about their child's future and feeling tired and sad, and (4) financial strain. Caregiver strain, which was associated with the child's disease severity (P<.001), decreased significantly in all therapeutic groups. CONCLUSIONS: Web-based family-oriented behavioral health care can improve caregiver strain and reduce family and time disruptions, missed work, and financial strain. Sources of caregiver strain vary and may be overlooked when relying on the conventional scoring of the Caregiver Strain Questionnaire-Short Form 7.

Socio-demographic factors and mental health trajectories in Australian children and primary carers: Implications for policy and intervention using latent class analysis.

Children's mental health status (MHS) is frequently influenced by their primary carers (PCs), underscoring the significance of monitoring disparities longitudinally. This research investigated the association between socio-demographic clusters and mental health trajectories among children and their PCs over time. Data from waves 6-9c2 of the Longitudinal Study of Australian Children (LSAC) were analyzed using Latent Class Analysis (LCA) to identify four socio-demographic classes among children aged 10-11 years at wave 6. Multinomial logistic regression and predictive marginal analysis explored associations between classes and mental health outcomes. PCs in Class 4 (disadvantaged and separated families with indigenous children) exhibited higher odds of borderline and abnormal MHS compared to Class 1 (prosperous and stable working families) across all waves. However, while MHS of PCs' impacted children consistently, the association with socio-demographic classes was significant only in wave 6. Class 4 children had elevated risks of mental illness compared to Class 1, while Class 3, characterized by educated working mothers, had lower risks. Reducing mental health risks entails addressing socio-economic disparities, supporting stable family structures, and offering tailored interventions like counseling and co-parenting support. Longitudinal monitoring and culturally sensitive approaches are crucial for promoting mental well-being across diverse groups.

Exploring the Support Needs of Chinese Family Carers of People Living with Dementia in New Zealand during the COVID-19 Pandemic: A Resilience Resources Framework Perspective.

Caring for people living with dementia during the novel coronavirus disease 2019 (COVID-19) pandemic significantly impacted the emotional, physical, and social well-being of carers. However, no study has focused on the well-being of Chinese carers of people living with dementia in New Zealand during the pandemic. This study aimed to explore the support needs of Chinese carers of people living with dementia in New Zealand during the COVID-19 pandemic. Semi-structured interviews were conducted by two bilingual and bicultural researchers. Thematic analysis was used to explore the resilience resources for Chinese carers. Twelve Chinese carers were recruited from four community organizations in New Zealand. Four themes were identified: (1) social isolation, (2) emotional loneliness, (3) ambivalent feelings of being a carer, and (4) a variety of unmet needs. The findings of our study provide new insights into the multiple support needs of Chinese carers of people living with dementia during the COVID-19 pandemic. Implications for practice include the establishment of culturally appropriate care support services and the development of tailored resilience-building interventions to address the unmet needs of Chinese carers of people living with dementia.

A Reliable and Accessible Caregiving Language Model (CaLM) to Support Tools for Caregivers: Development and Evaluation Study.

BACKGROUND: In the United States, 1 in 5 adults currently serves as a family caregiver for an individual with a serious illness or disability. Unlike professional caregivers, family caregivers often assume this role without formal preparation or training. Thus, there is an urgent need to enhance the capacity of family caregivers to provide quality care. Leveraging technology as an educational tool or an adjunct to care is a promising approach that has the potential to enhance the learning and caregiving capabilities of family caregivers. Large language models (LLMs) can potentially be used as a foundation technology for supporting caregivers. An LLM can be categorized as a foundation model (FM), which is a large-scale model trained on a broad data set that can be adapted to a range of different domain tasks. Despite their potential, FMs have the critical weakness of "hallucination," where the models generate information that can be misleading or inaccurate. Information reliability is essential when language models are deployed as front-line help tools for caregivers. OBJECTIVE: This study aimed to (1) develop a reliable caregiving language model (CaLM) by using FMs and a caregiving knowledge base, (2) develop an accessible CaLM using a small FM that requires fewer computing resources, and (3) evaluate the model's performance compared with a large FM. METHODS: We developed a CaLM using the retrieval augmented generation (RAG) framework combined with FM fine-tuning for improving the quality of FM answers by grounding the model on a caregiving knowledge base. The key components of the CaLM are the caregiving knowledge base, a fine-tuned FM, and a retriever module. We used 2 small FMs as candidates for the foundation of the CaLM (LLaMA [large language model Meta AI] 2 and Falcon with 7 billion parameters) and adopted a large FM (GPT-3.5 with an estimated 175 billion parameters) as a benchmark. We developed the caregiving knowledge base by gathering various types of documents from the internet. We focused on caregivers of individuals with Alzheimer disease and related dementias. We evaluated the models' performances using the benchmark metrics commonly used in evaluating language models and their reliability for providing accurate references with their answers. RESULTS: The RAG framework improved the performance of all FMs used in this study across all measures. As expected, the large FM performed better than the small FMs across all metrics. Interestingly, the small fine-tuned FMs with RAG performed significantly better than GPT 3.5 across all metrics. The fine-tuned LLaMA 2 with a small FM performed better than GPT 3.5 (even with RAG) in returning references with the answers. CONCLUSIONS: The study shows that a reliable and accessible CaLM can be developed using small FMs with a knowledge base specific to the caregiving domain.

'Are We Gonna Have to Pretend to Be a Straight Couple?': Examining the Specific Detriment that Cisgenderism Places on Non-Binary Adoption and Fostering Applicants in the United Kingdom.

This exploratory qualitative study aimed to find out more about how the children's social work system interacts with non-binary parents. It highlights the specific detriment that can be faced by non-binary people hoping to adopt or foster in the United Kingdom. Three key themes emerged: (1) Barriers for non-binary carers, (2) Prejudice in adoption and fostering matching processes and (3) Intersectional disadvantage. The study found that non-binary people experience specific detriment when endeavouring to start or grow their families, examining how cisgenderism operates to privilege some identities over others. Multiple barriers affect the way non-binary people try and navigate how their family lives in a society that is organised around binary gender identities. Cisgenderism can subtly and pervasively exert a devaluing of identities that sit outside of entrenched binary gender norms, influencing how people can understand and express their gender identities within society.

Suicidal Thoughts and Behaviors in Parents Caring for Children with Disabilities and Long-Term Illnesses.

OBJECTIVE: There is a growing body of evidence on suicide risk in family carers, but minimal research on parents caring for children with disabilities and long-term illnesses. The aim of this study was to conduct the first dedicated research on suicide risk in parent carers and identify: (1) the number of parent carers experiencing suicidal thoughts and behaviors, and (2) the risk and protective factors for suicidality in this population. METHOD: A cross-sectional survey of parent carers in England (n = 750), co-produced with parent carers. Suicidal thoughts and behaviors were measured with questions from the Adult Psychiatric Morbidity Survey. Frequencies summarized the proportion of carers experiencing suicidal thoughts and behaviors. Logistic regressions identified risk and protective factors. RESULTS: 42% of parents had experienced suicidal thoughts and behaviors while caring for a disabled or chronically ill child. Only half had sought help for these experiences. Depression, entrapment, dysfunctional coping, and having a mental health diagnosis prior to caring, were significant risk factors. CONCLUSION: Parent carers contemplate suicide at levels that exceed those of other family carers and the general public. There is an urgent need, in policy and practice, to recognize parent carers as a priority group for prevention and intervention.

This is the first dedicated study of suicide risk in parent carers.More than 40% of parents had considered suicide while caring for a disabled or chronically ill child.The risk factors for suicidal ideation in parent carers were depression, entrapment, dysfunctional coping strategies, and having a mental health diagnosis prior to becoming a carer.Parent carers may be a high-risk group for suicide and need urgent support.

Investigating the Differential Impact of Short- and Long-Term Informal Caregiving on Mental Health Across Adolescence: Data From the Tokyo Teen Cohort.

PURPOSE: Young caregivers experience, on average, poorer mental health outcomes than non-caregiving young people. However, it is unknown to what extent these effects differ with age, or among short-term versus long-term caregivers. Using repeated assessment of young caregiving across multiple waves of a prospective adolescent cohort study, we conducted repeated cross-sectional analyses of caregiver status and contemporaneous depressive symptoms, self-harm, and suicidality in early to middle adolescence. METHODS: Four waves of questionnaire data from a large, longitudinal population-based cohort study (Tokyo Teen Cohort) were analyzed. Caregiver status was collected from participants aged 10, 12, 14, and 16 years. Mental health outcomes assessed were depressive symptoms, self-harm and suicidal feelings. Logistic regression analyses were conducted assessing effects of a) young caregiver status and b) new, long-term, and ex-caregiver 2-year categorizations on mental health outcomes at 12, 14, and 16 years, both unadjusted and adjusted for potential confounders (sex, low income, single-parent household, and parental distress). RESULTS: Depressive symptoms were elevated among long-term caregivers at 14 years (unadjusted odds ratio (uOR): 3.11 [1.33-7.27], adjusted odds ratio (aOR): 2.49 [1.03-5.99]). Borderline associations between long-term caregiving and self-harm (uOR: 3.14 [1.06-9.35], aOR: 2.51 [0.82-7.63]) and suicidal feelings (uOR: 2.49 [0.98-6.34], aOR: 2.06 [0.80-5.33]) were detected at 16 years. No associations were found at age 12 years in primary analyses; sensitivity analyses indicated possible increased depressive symptoms. DISCUSSION: Young caregivers with long-term caregiving roles are at the greatest risk for negative mental health outcomes, with effects concentrated in later adolescence. These findings highlight urgent need for early identification and practical and psychological support for young people shouldering caregiving burdens.

A retrospective epidemiological study of sarcoptic mange in koalas (Phascolarctos cinereus) using wildlife carer admission records.

Outbreaks of sarcoptic mange are sporadically reported in koala populations across Australia, but disease characteristics (e.g., distribution across the body) remain poorly understood. In an area of Northern Victoria regular cases coming into care suggest mange may have become enzootic, and here we characterise those koala mange admission records. In 18% (n = 10) of mange affected koala reports that had a recorded outcome (n = 55), the animals died before the carers could locate them, and of the remaining 45 koalas that were alive upon carer arrival, 80% (n = 36) had to be euthanised due to severe mange. The number of admissions varied among years (highest observed in 2019), and over 60% of affected koala admissions were male. Male admissions peaked in austral spring and again in late austral summer-autumn (mating and birthing seasons), with female admissions only exhibiting the latter peak (birthing season). Fissures of the epidermis of the front paws occurred in 100% of admitted koalas, with 70% also showing these signs elsewhere on ventral surfaces or limbs. Only male koalas had signs of mange on the chest and face, and only female koalas had signs of mange on their back. Collectively, this study suggests sarcoptic mange can be a severe disease in koalas, and that male koalas may play an important role in seasonal transmission dynamics. We discuss how these findings may help inform intervention strategies.

Understanding Dementia Carer Experiences Before Admission to a Residential Aged Care Facility: Implications for Integrated Care.

In-depth understanding of dementia carer experience can assist clinicians by providing insight into dementia onset, symptoms and management, and help conceptualize and understand the pattern of dementia progress over time and what help is needed. We undertook a qualitative study to understand dementia carers experiences of providing care and reasons for admission to a residential aged care facility (RACF). Three themes were identified: (1) Challenges in the path to diagnosis and care, leading to delays accessing support; (2) Carer role impacted by living circumstances; and (3) Variation in decision support prior to admission to a RACF. Identifying dementia carer experiences, reinforces the need for more timely diagnosis, referral for support and interventions to promote better quality of life for a people living with dementia and their carer and to delay premature RACF placement.

Using FRAME to adapt an evidence-based dyadic intervention program for people living with dementia in residential aged care: A pilot feasibility study.

INTRODUCTION: The purpose of this study was to examine the feasibility of adapting and translating an evidence-based occupational therapist-delivered program shown to be effective in the community to residential aged care (RAC). The program aims to improve quality of care and quality of life for people living with dementia and the wellbeing of the family care partner. METHODS: This study took place in a not-for-profit RAC home in Adelaide, South Australia. Mixed methods, specifically questionnaires, activity logs, focus group, and one-on-one interviews were used to evaluate the feasibility of the program implementation. Staff working in the participating home, occupational therapists trained to deliver the program, and residents and their family carer partners were included. Quantitative data were analysed using proportions, means, and standard deviations. Qualitative data were analysed using a thematic approach. CONSUMER AND COMMUNITY INVOLVEMENT: This study was conducted together with a consumer (person living with dementia) and a carer representative (family member of someone residing in RAC). These representatives provided input towards the study design, interpretation of study data, discussion of results, and recommendations for future consideration. RESULTS: Small changes to the program improved feasibility and acceptability for delivery in RAC. While the care home staff required added support during implementation, the intervention therapists felt that the program could be delivered in this setting. Family care partners of residents with dementia felt that the program may be better suited if provided upon entry to RAC or in early stages of dementia. CONCLUSION: Adapting a community-based dementia care program to RAC can be safe and feasible. Program adaptations are necessary for feasibility. Further adaptations and evaluations of associated outcomes (related to residents with dementia and their family care partners) are needed to assess the program effectiveness in larger scale. PLAIN LANGUAGE SUMMARY: Spending quality time with family members in residential aged care is important. However, many struggle to know what to say or do when visiting a family member who lives with dementia. Programs that teach families about how to communicate with people living with dementia, how to support them to take part in important everyday living activities, or how to understand why changes in behaviours may occur have not been available in residential aged care. This paper describes how we adapted one such evidence-based program from community to residential aged care settings. We consulted with people living with dementia, carers, and families and found that the program could also be valuable in this care setting. Residential aged care staff described how the program is very different to what is usually available in residential aged care, but they were optimistic that with the right support, it could be a valuable way to support residents with dementia and their families. Family members of residents with dementia and therapists delivering the program felt that residents in early stages of living in residential aged care and/or early stages of dementia could benefit the most from these programs. We found that including family members in the intervention process can be useful and empowering for families and residents. Future work should also focus on involving other staff members caring for residents in the process. Communication between staff and families is the key for program delivery and success and treating each person as an individual.

Differences in trajectories of quality of life according to type of dementia: 6-year longitudinal findings from the IDEAL programme.

BACKGROUND: People with different types of dementia may have distinct symptoms and experiences that affect their quality of life. This study investigated whether quality of life varied across types of dementia and over time. METHODS: The participants were 1555 people with mild-to-moderate dementia and 1327 carers from the IDEAL longitudinal cohort study, recruited from clinical services. As many as possible were followed for up to 6 years. Diagnoses included were Alzheimer's disease, vascular dementia, mixed Alzheimer's and vascular dementia, Parkinson's disease dementia, dementia with Lewy bodies, and frontotemporal dementia. Self- and informant-rated versions of the Quality of Life in Alzheimer's Disease scale were used. A joint model, incorporating a mixed effects model with random effects and a survival model to account for dropout, was used to examine whether quality of life varied by dementia type at the time of diagnosis and how trajectories changed over time. RESULTS: The strongest associations between dementia type and quality of life were seen around the time of diagnosis. For both self-ratings and informant ratings, people with Parkinson's disease dementia or dementia with Lewy bodies had lower quality of life scores. Over time there was little change in self-rated scores across all dementia types (- 0.15 points per year). Informant-rated scores declined over time (- 1.63 points per year), with the greatest decline seen in ratings by informants for people with dementia with Lewy bodies (- 2.18 points per year). CONCLUSIONS: Self-rated quality of life scores were relatively stable over time whilst informant ratings showed a steeper decline. People with Parkinson's disease dementia or dementia with Lewy bodies report particularly low levels of quality of life, indicating the importance of greater attention to the needs of these groups.

[The contribution of a mental health patient trainer to carers]. / L'apport d'une patiente-formatrice en santé mentale auprès des soignants.

As peer support becomes more professional, it is becoming increasingly recognised and diversified. When a mental health patient-trainer works with psychiatric carers, the latter gain a better understanding of the patient's point of view. In addition, valuing their experiential knowledge can support peer helpers in their recovery. However, we mustn't forget that these are fragile people and that their past can come back to haunt them if they are not careful. Testimonial.

[Thinking about family carers in terms of their experiential knowledge]. / Penser le proche aidant au regard de son savoir expérientiel.

Despite well-established recommendations and psycho-education programmes, the health of family carers is most often impaired, which means that the support they provide is seen only in terms of burden. A phenomenological approach based on strength-based care shows that they develop skills and strategies for the well-being of their loved one, and are nurtured by a sense of hope that enables them to acquire experiential knowledge.

Care needs of people with dementia in Tanzania and associated impact on carers: A cross-sectional, observational study.

Objectives: This study aimed to understand the care needs, care arrangements and burden of care for people with dementia in Northern Tanzania. Methods: This was a cross-sectional, observational study. People with dementia and their carers (n = 53) were recruited from an outpatient clinic, and data on carer burden and independence in activities of daily living were collected. Associations with carer burden and characteristics were explored through non-parametric tests and regression analyses. Results: Thirty-six carers were female (68%). Levels of impairment in instrumental activities of daily living were high, with a median score of 38 out of 44 on the Identification and Intervention for Dementia in Elderly Africans - Instrumental Activities of Daily Living (IDEA-IADL). Carer burden was moderate with a median Zarit Burden Interview (ZBI) score of 46 out of 88. Being a female carer was associated with higher carer burden (odds ratio 3.68, 95% CI 1.04-12.99). Discussion: Carer burden was found to be higher than in previous studies based in low-and-middle income countries. Further research is needed to explore this difference, and to identify interventions to support care needs and reduce carer burden.

Double-Duty Carers' Health and Wellbeing during COVID-19: Exploring the Role of Mobility of the Care Economy in Southern Ontario, Canada.

Double-Duty Carers (DDCs) refer to people who work in the healthcare industry while also providing unpaid care to relatives, friends, or neighbours. The expectations placed on DDCs is expected to grow, and these employees already experience a high caring burden. As such it is important to understand how best to support their health and wellbeing. This paper explores DDCs' wellbeing during the COVID-19 pandemic, focusing an understudied factor: their mobility constraints. Following the Mobility of the Care Economy framework and a qualitative research design, it does so through a thematic analysis of 16 semi-structured interviews with female DDCs in Southern Ontario, Canada. Once data saturation was reached, three mobility pathways during the pandemic were identified, all of which negatively affected DDCs wellbeing. First, some COVID-19 policies (e.g., testing requirements) resulted in increased mobility demands and increased spatiotemporal constraints. Second, the closure of institutions that care for dependents (schools, daycares, day centres) resulted in forced reduced mobility, which increased financial stress. Finally, indirect mobility effects were identified: the reduced mobility of other informal carers increased the workload and emotional strain on DDCs. The paper concludes with a discussion of mobility-related policies that could improve DDC wellbeing.