Assessing the impact of an online dementia awareness initiative co-created with and for English, Arabic and Vietnamese speaking communities: A case study.

BACKGROUND: Awareness and understanding of dementia remain limited in ethnically diverse populations in multicultural societies due to culturally inappropriate and inaccessible information. OBJECTIVE: To establish the impact, helpers and hinderers of an online multilingual dementia awareness initiative co-created with and for English, Arabic and Vietnamese speaking people. DESIGN: A case study using mixed methods to assess the impact and implementation of an information session on dementia knowledge. SETTING AND PARTICIPANTS: The study was conducted with English, Arabic and Vietnamese speaking individuals in Canterbury-Bankstown, Australia. INTERVENTION STUDIED: A dementia alliance co-created an online multilingual dementia information session, which was delivered synchronously in English, Arabic and Vietnamese by trained facilitators. MAIN OUTCOME MEASURES: In-session group discussions, quizzes and a postsession survey assessed the impact on dementia knowledge. A postimplementation focus group explored the factors that helped and hindered the initiative. RESULTS: The online dementia information session successfully supported participants understanding of dementia causes, impacts and care strategies. The initiative was hindered by competing priorities and limited accessibility to target audiences, while it was helped by the support of an established organisation and feedback mechanisms. DISCUSSION: Ongoing dementia education and awareness-raising campaigns that are culturally sensitive are needed in communities to promote dementia literacy and help-seeking. CONCLUSIONS: An online multilingual dementia information session can be an effective way to improve dementia literacy and advocate for change in multicultural communities. PATIENT OR PUBLIC CONTRIBUTION: English, Arabic and Vietnamese speaking members of the Canterbury Bankstown Dementia Alliance participated in the co-creation and evaluation of this initiative.

"You're the only thing he comes out [of his room] for": A qualitative study of engagement between Laughter Care Specialists and families of people with dementia in long-term care.

OBJECTIVES: Family involvement in the lives of people who have dementia and live in long-term care is important, but family members may face challenges communicating and connecting with their loved one as dementia progresses. A type of therapeutic humor (Laughter Care) delivered by trained specialists aims to engage people with dementia who reside in long-term care through creative play and laughter. This study aimed to explore the perceptions of Laughter Care Specialists (LCSs) regarding families' engagement with the program. METHODS: Semi-structured interviews were conducted with LCSs (n = 8) and analyzed inductively using thematic analysis. RESULTS: Family members were reported to initially have varied degrees of openness toward Laughter Care, but often become more accepting after observing positive engagement with the person with dementia. Family members were perceived to benefit from the program through witnessing the person with dementia enjoy joyous and light interactions, learn new ways of communicating and connecting with the person with dementia, and engage in positive interactions at end of life. SIGNIFICANCE OF RESULTS: Laughter Care may provide family members with novel ways of communicating and connecting with people who have dementia at end of life as well as comfort into bereavement.

Bureaucracy and burden: An Intersectionality-Based Policy Analysis of social welfare policy with consequences for carers of people with life-limiting illness.

BACKGROUND: For informal carers of people with life-limiting illness, social welfare policy related to income support and housing has been associated with varied psychosocial issues, yet remains relatively under-explored. An intersectional approach offers potential to illuminate diverse experiences and implications. AIM: To explore the way in which caring in the context of life-limiting illness is framed within welfare policy, to articulate inequities encountered by carers, and to identify policy and practice recommendations. DESIGN: The Intersectionality-Based Policy Analysis (IBPA) Framework was used to situate findings of a broader qualitative study. SETTING/PARTICIPANTS: Data were collected via semi-structured interviews with participants who were bereaved carers (n = 12), welfare workers (n = 14) and palliative care workers (n = 7), between November 2018 and April 2020, in an Australian region associated with socioeconomic disadvantage. Five elements of IBPA were applied to the products of analysis of this data. RESULTS: Use of the IBPA Framework revealed that representations of carers and causes of their welfare needs in policy were underpinned by several assumptions; including that caring and grieving periods are temporary or brief, and that carers have adequate capacity to navigate complex systems. Policy and processes had differentiated consequences for carers, with those occupying certain social locations prone to accumulating disadvantage. CONCLUSIONS: This intersectional analysis establishes critical exploration of the framing and consequences of welfare policy for carers of people with life-limiting illness, presented in a novel conceptual model. Implications relate to intersectoral development of structural competency, responsiveness to structurally vulnerable carers in clinical practice, and needed policy changes.

The importance of developing palliative care quality indicators for the prison setting: why now, and next steps.

Palliative care is increasingly important in the prison setting, but information about the quality and accessibility of this care is extremely limited. Developing and implementing standardised quality indicators will provide transparency, accountability, and a platform for quality improvement at both local and national levels.

Feasibility of Integrating MEditatioN inTO heaRt Disease (the MENTOR Study): A Phase II Randomized Controlled Trial.

BACKGROUND: Comorbid depression and/or anxiety symptoms occur in 25% of patients attending cardiac rehabilitation (CR) programs and are associated with poorer prognosis. There is a need to evaluate psychological interventions, including meditation, that have potential to improve psychological health in CR programs. AIMS: The aim of this study was to determine the feasibility and acceptability of integrating a meditation intervention into an existing Australian CR program for the reduction of depression and anxiety symptoms. METHODS: This was a mixed-methods feasibility randomized controlled trial. Thirty-one patients with CVD and, at a minimum, mild depression and/or anxiety symptoms were randomized to meditation and standard CR or to standard CR alone. A 16-minute guided group meditation was delivered face-to-face once a week for 6 weeks, with daily self-guided meditation practice between sessions. Feasibility outcomes included screening, recruitment, and retention. Semistructured interviews of patients' (n = 10) and health professionals' (n = 18) perspectives of intervention participation and delivery were undertaken to assess acceptability. Between-group differences in depression, anxiety, stress, self-efficacy for mindfulness, and health status at 6 and 12 weeks were also assessed. RESULTS AND CONCLUSION: Meditation was considered feasible, with 83% (12/15) of the intervention group completing an average of 3.13 (SD, 2.56) out of 6 group meditation sessions and 5.28 (SD, 8.50) self-guided sessions. Meditation was considered acceptable by patients, clinicians, and health managers. Between-group differences in the number of CR sessions completed favored the intervention group in per-protocol analyses (intervention group vs control group, 12 vs 9 sessions; P = .014), which suggests that meditation may be useful to improve patients' adherence to exercise-based CR program.

The Patient Experience After Spontaneous Coronary Artery Dissection.

OBJECTIVE: There is considerable burden of anxiety, depression, and post-traumatic stress disorder in patients with spontaneous coronary artery dissection (SCAD), yet research is limited on the experience and impact of SCAD from the patient perspective. This literature review sought to describe the current state of the literature on the patient experience of SCAD and consequences for patients following a SCAD event from the patient perspective. To better understand how people's experiences of SCAD affect their wellbeing, quality of life, lifestyles, and identity, and what would be useful from the patient perspective, an integrative review was performed. METHODS: An integrative literature review was conducted to understand the experience of SCAD and the post-event implications. Five databases were searched. Search terms included 'spontaneous coronary artery dissection', 'SCAD', 'patient', 'experience', 'perspective', and 'opinion'. English-language, peer-reviewed primary research in people with a diagnosis of SCAD that reflected the patient experience was included. Data indicating the SCAD experience including distress prevalence were extracted into an Excel spreadsheet, and narrative synthesis of included studies followed. FINDINGS: From 325 identified studies, five were included for review, yielding a combined sample of 447 participants. Patients with SCAD reported a lack of information about SCAD and the recovery process, and use of the internet for obtaining information. Patients with SCAD reported challenges in recovery including anxiety associated with fear of recurrence and uncertainty, and a need for greater support. A wide range of negative emotions was reported during and after the SCAD event. Participants reported participating in support groups, with mixed reviews of their appropriateness and effectiveness.

Palliative care needs and experiences of people in prison: A systematic review and meta-synthesis.

BACKGROUND: Globally, the prison population is growing and ageing, as is the need for palliative care. Yet, little is known about how people in prison perceive palliative care provision in this setting. AIMS: To identify the: (i) perceptions of palliative care provision and dying in custody by people in prison; and (ii) perceived barriers and facilitators of person-centred palliative care provision in prison. DESIGN: A systematic review and meta-synthesis was registered and undertaken in accordance with the reporting guidelines. DATA SOURCES: Keywords and MeSH headings encompassing (i) palliative care, end-of-life care, death; and (ii) prison; were used to search Pubmed, Medline, CINAHL, PsycINFO, Web of Science, CINCH and ProQuest Central. Articles published in English, from high income countries, and containing qualitative data exploring perceptions of people in prison of palliative care in custody were included. Findings were reporting using the ENTREQ guidelines. FINDINGS: Of the 2193 articles identified, 12 were included. Experiences of people in prison regarding palliative care related to two themes: (1) expectations versus experiences of palliative care; and (2) prison context complicates access to and provision of palliative care. People in prison with palliative care needs want to feel safe, cared for, and acknowledged as they face an expected death. The prison environment can severely restrict access to palliative care, leaving people in prison feeling isolated and powerless. CONCLUSIONS: People in prison expect to receive high-quality palliative care, but their experiences often do not match their expectations. Numerous structural and organisational challenges complicate the provision of palliative care in prisons, limiting accessibility of care.

Caring for depression in the dying is complex and challenging - survey of palliative physicians.

BACKGROUND: Depression is prevalent in people with very poor prognoses (days to weeks). Clinical practices and perceptions of palliative physicians towards depression care have not been characterised in this setting. The objective of this study was to characterise current palliative clinicians' reported practices and perceptions in depression screening, assessment and management in the very poor prognosis setting. METHODS: In this cross-sectional cohort study, 72 palliative physicians and 32 psychiatrists were recruited from Australian and New Zealand Society of Palliative Medicine and Royal Australian and New Zealand College of Psychiatrists between February and July 2020 using a 23-item anonymous online survey. RESULTS: Only palliative physicians results were reported due to poor psychiatry representation. Palliative physicians perceived depression care in this setting to be complex and challenging. 40.0% reported screening for depression. All experienced uncertainty when assessing depression aetiology. Approaches to somatic symptom assessment varied. Physicians were generally less likely to intervene for depression than in the better prognosis setting. Most reported barriers to care included the perceived lack of rapidly effective therapeutic options (77.3%), concerns of patient burden and intolerance (71.2%), and the complexity in diagnostic differentiation (53.0%). 66.7% desired better collaboration between palliative care and psychiatry. CONCLUSIONS: Palliative physicians perceived depression care in patients with very poor prognoses to be complex and challenging. The lack of screening, variations in assessment approaches, and the reduced likelihood of intervening in comparison to the better prognosis setting necessitate better collaboration between palliative care and psychiatry in service delivery, training and research.

Caring and Grieving in the Context of Social and Structural Inequity: Experiences of Australian Carers With Social Welfare Needs.

Caring for and bereavement following the death of someone with a life-limiting illness may precipitate social welfare needs related to income support and housing. Nevertheless, carer experiences of welfare policy and institutions have not received significant attention. This qualitative study explored experiences of carers who navigated social welfare policy while caring for someone with a life-limiting illness, and in bereavement. In-depth interviews were conducted with 12 bereaved carers in an area associated with socioeconomic disadvantage. Carers differentially encountered precariousness, with some experiencing structural vulnerability. These positionalities appeared to be shaped by policy and process-related burdens, perceptions of the welfare state, and degrees of legitimisation or disenfranchisement of forms of capital and coping orientations. Recommendations that may improve carer experience were identified. Implications relate to the need for an expanded conceptualisation of vulnerability in health and welfare practice, policy that authentically validates caring and grieving, and upstream strategies that address inequity.

Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare.

BACKGROUND: Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life. AIM: To explore ways in which palliative care and welfare sector workers perceive and approach experiences and needs of the carers of people with life-limiting illnesses who receive government income support or housing assistance, in an area of recognised socioeconomic disadvantage. DESIGN: An interpretive descriptive study employed in-depth, qualitative interviews to explore participants' reflections on working with carers of someone with a life-limiting illness. Data were analysed using the framework approach. SETTING/PARTICIPANTS: Twenty-one workers employed within three public services in Western Sydney were recruited. RESULTS: Workers articulated understandings of welfare policy and its consequences for carers at end-of-life, including precariousness in relation to financial and housing circumstances. Identified resources and barriers to the navigation of social welfare needs by carers were categorised as personal, interpersonal and structural. CONCLUSIONS: Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.

"Ask Parents What They Want to Do" - Mothers Seeking Help with Parenting and Their Perspectives on Barriers and Potential Enablers for Help with Smoking Cessation: A Qualitative Study.

PURPOSE: To describe parents' perceptions of opportunities and barriers to smoking cessation in early parenting and the support needed to achieve this. DESIGN AND METHODS: A qualitative approach, using semi-structured interviews with mothers, and inductive thematic analysis. RESULTS: Barriers to cessation intervention included readiness to quit, lack of knowledge, and the shame and stigma of seeking help. Mothers' perceived opportunities for support from early parenting services included approaches to effecting change, leveraging opportunities to explore smoking cessation, and tailoring interventions to family strengths, with a focus on promoting attachment. CONCLUSIONS: Mothers may be struggling with parenting, but are also open to opportunities to explore smoking behaviours and intervention. Nurses and other health care professionals working in this setting may be well situated to support parents with their decisions to consider smoking cessation and avoid smoking relapse. PRACTICE IMPLICATIONS: The findings can assist nurses and other early parenting service clinicians to consider their approach to parents who continue to smoke or are at risk of smoking relapse.

The Role of Lifestyle and Cardiovascular Risk Factors in Dropout From an Australian Cardiac Rehabilitation Program. A Longitudinal Cohort Study.

BACKGROUND: Cardiac rehabilitation (CR) programs reduce the risk of further cardiac events and improve the ability of people living with cardiovascular disease to manage their symptoms. However, many people who experience a cardiac event do not attend or fail to complete their CR program. Little is known about the characteristics of people who drop out compared to those who complete CR. AIMS: To identify subgroups of patients attending a cardiac rehabilitation program who are more likely to dropout prior to final assessment by (1) calculating the dropout rate from the program, (2) quantifying the association between dropout and socio-demographic, lifestyle, and cardiovascular risk factors, and (3) identifying independent predictors of dropout. METHODS: The study population is from a large metropolitan teaching hospital in Sydney, Australia, and consists of all participants consecutively enrolled in an outpatient CR program between 2006 and 2017. Items assessed included diagnoses and co-morbidities, quality of life (SF-36), psychological health (DASS-21), lifestyle factors and physical assessment. Dropout was defined as failure to complete the outpatient CR program and post CR assessment. RESULTS: Of the 3,350 patients enrolled in the CR program, 784 (23.4%; 95%CI: 22.0-24.9%) dropped out prior to completion. The independent predictors of dropout were smoking (OR 2.4; 95%CI: 1.9-3.0), being separated or divorced (OR 2.0; 95%CI: 1.5-2.6), younger age (<55 years) (OR 1.9; 95%CI: 1.6-2.4), obesity (OR 1.6; 95%CI: 1.3-2.0), diabetes (OR 1.6; 95%CI: 1.3-2.0), sedentary lifestyle (OR 1.3; 95%CI: 1.1-1.6) and depressive symptoms (OR 1.3; 95%CI: 1.1-1.6). CONCLUSION: To improve the CR program completion rate, clinicians need to consider the impact of socio-demographic, lifestyle, and cardiovascular risk factors on their patients' ability to complete CR. Tailored strategies which target the independent predictors of dropout are required to promote adherence to CR programs and thereby potentially reduce long-term cardiovascular risk.

Patient preferences for heart failure education and perceptions of patient-provider communication.

OBJECTIVE: For people managing chronic illness, such as heart failure, adequate health literacy is crucial to understand the complex information that underpins self-care, yet evidence suggests poor understanding in this patient population. To better understand patients' heart failure comprehension and why knowledge gaps may exist, this study sought to explore perceptions of patient-provider communication and ascertain unmet educational needs and preferences. METHODS: Semi-structured in-depth interviews were conducted with 15 symptomatic inpatients with heart failure. Data collection and analysis occurred simultaneously until saturation was reached. Transcripts were analysed using thematic analysis. RESULTS: Participants relied heavily on providers for HF information and support, expressed numerous unmet educational needs and had mixed feelings about quality of communication. Participants expressed the need for credible, tailored heart failure information that accounted for comorbid conditions and preference for face-to-face information delivery. Knowledge gaps included heart failure pharmacotherapy, symptom appraisal and management, cause and chronicity of heart failure, and a specific action plan for heart failure symptom exacerbation. Barriers to effective patient-provider communication included providers using complex medical terminology, lack of adequately detailed information, relationships that did not foster open communication and participants' memory problems. CONCLUSION: Gaps in knowledge and poor communication may indicate inadequate availability of multidisciplinary heart failure management programmes and/or fidelity to guideline recommendations. PRACTICE IMPLICATIONS: Evaluating heart failure management programmes is important to ensure consistent delivery of best-practice education and care. Nurses play a key role in the delivery of patient-focused health information.

Collaborating across sectors to provide early intervention for Aboriginal and Torres Strait Islander children with disability and their families: a qualitative study of provider perspectives.

Aboriginal and Torres Strait Islander children experience a higher prevalence of disability than other Australian children. Early intervention from across the health, education, and social service sectors is vital for improving outcomes, but families face lack of coordination between services. This study aimed to inform improvements in service access for families of urban-dwelling Aboriginal children with disability through exploring providers' perceptions of factors that influenced working together across sectors. Semi-structured interviews were conducted. Data analysis was informed by the general inductive approach and the Collaborative Practice to Enhance Patient Care Outcomes framework. Twenty-four providers participated. Interprofessional collaborative practice was influenced by interdependent interactional and organizational factors. Interactional factors fit within one of two dimensions: the ability of providers to share common goals and vision within a complex cross-sector service landscape, and influence of interpersonal relationships on their sense of belonging working in a cross-cultural space. Organizational factors also fit within one of two dimensions: the influence of governance in relation to its role in coordination and unlocking the strength of schools as service settings, and the need to formalize processes for effective interprofessional communication. Interprofessional collaborative practice was managed within the context of systemic factors relating to policy and funding. These findings demonstrate the complex interplay of factors related to the cross-sector involvement of providers in early intervention service provision. Consideration of these factors is required to facilitate collaborative cross-sector responses to improve service access for Aboriginal families.Abbreviations: WHO: world health organization; ACCHS: aboriginal community controlled health service; GP: general practitioner; NDIS: national disability insurance scheme.

Health status in South Australians caring for people with cancer: A population-based study.

OBJECTIVES: To compare physical and mental health status between cancer carers versus non-carers in a population-based sample and explore sociodemographic and caring characteristics associated with poor carer health status. METHODS: The South Australian Health Omnibus is a population-based cross-sectional survey. Carer status was self-defined by participants as having cared for someone with cancer in the last 5 years. Health status was considered poor if it was 0.5 standard deviation lower than Australian norms on the Medical Outcomes Study 12-Item Short-Form (SF-12) physical and mental component summary scores (PCS and MCS). Regression analyses compared mean PCS/MCS between carers versus non-carers, controlling for sociodemographic variables, and explored associations between poor health status and caring and support among carers. RESULTS: The weighted sample included 2962 people, of whom 374 (12.6%) were cancer carers and 1993 (67.3%) non-carers. Carers had significantly worse PCS/MCS, controlling for sociodemographic variables, but did not differ significantly regarding proportions with poor health status. Carer characteristics associated with poor PCS and MCS included socio-economic indicators and involvement in medication management. Assisting with household tasks was protective. CONCLUSIONS: This population-based study followed those previous ones in finding cancer carers to have poorer mean health status than non-carers. However, differences were less pronounced than previously reported, likely because of the sample being drawn from a general rather than cancer service population and including past as well as current carers, as well as all cancer types and stages. Future longitudinal research is needed to identify factors that predict recovery post caring.

Negotiating health and chronic illness in Filipino-Australians: a qualitative study with implications for health promotion.

OBJECTIVE: In spite of the healthy immigrant effect, the prevalence of lifestyle-related chronic diseases among migrants is reported to approximate that of the host country with longer duration of stay. For example, higher rates of chronic diseases such as Type 2 diabetes and hypertension have been observed among Filipino migrants and these have been linked to acculturation. The aim of this study was to explore the experiences of Filipino-Australian migrants in managing their chronic health conditions in a Western host country. DESIGN: This paper reports on qualitative findings of a mixed methods study that used an explanatory sequential design. Nine focus group discussions were undertaken with 58 Filipino-Australian migrants with chronic disease. Thematic analysis was undertaken using a five-stage general purpose thematic framework ensuring that themes closely identified key participants' experiences . RESULTS: Findings revealed that health benefits provided by the health system in Australia were considered advantageous. However, a lack of social and instrumental support compounded isolation and disempowerment, limiting self-management strategies for chronic illnesses. Cultural beliefs and practices influenced their knowledge, attitude to and management of chronic disease, which health service providers overlooked because of perceived acculturation and English language skills. Overall this study has clearly identified recognition of cultural beliefs, language needs and support as three core needs of Filipino-Australian migrants with the elderly the most vulnerable. CONCLUSION: This paper highlights that self-management of chronic disease among elderly Filipino immigrants may be adversely affected by host language difficulties, a lack of social support and cultural issues, impacting on access to services, health-seeking behaviours and participation in health promotion initiatives. Language, culture-specific health interventions and resources and enhancing social support are likely important strategies in promoting chronic disease self-management among the elderly. These interventions have the potential to empower and encourage individuals to take control and better manage their chronic disease.

Interacting With Providers: An Intersectional Exploration of the Experiences of Carers of Aboriginal Children With a Disability.

Intersectionality has potential to create new ways to describe disparities and craft meaningful solutions. This study aimed to explore Aboriginal carers' experiences of interactions with health, social, and education providers in accessing services and support for their child. Carers of Aboriginal children with a disability were recruited from an Australian metropolitan Aboriginal community-controlled health service. In-depth, semistructured interviews were conducted with 19 female carers. Intersectionality was applied as an analytical framework due to the inherent power differentials for Aboriginal Australians and carers for people with a disability. Marginalization and a lack of empowerment were evident in the experiences of interactions with providers due to cultural stereotypes and racism, lack of cultural awareness and sensitivity, and poverty and homelessness. Community-led models of care can help overcome the intersectional effects of these identities and forms of oppression in carers' interactions with providers and enhance access to care.

Family-focussed interventions to reduce harm from smoking in primary school-aged children: A systematic review of evaluative studies.

Children living in families where adults smoke are exposed to harmful effects of tobacco smoke and risk a predisposition to smoking initiation. Interventions to support families to reduce risk of harm from smoking have been developed and tested. The purpose of this review is to identify effective family-based interventions used to promote smoke-free home environments in families with primary school age children (aged 5-12years). A systematic search of MEDLINE, Cochrane and CINAHL electronic databases was conducted. Narrative synthesis of included articles was completed. Guidelines for reporting behaviour change interventions were used to summarise and compare intervention timing, content, intensity and delivery. Quality of included studies was critiqued using United States Preventative Services Taskforce (USPST) procedures for internal and external validity. Narrative synthesis was based on methods described by Popay and colleagues. Nineteen articles that evaluated 14 intervention studies focussed on child smoking prevention (n=5), parent smoking cessation (n=4) and environmental tobacco smoke reduction (n=6). Interventions and outcomes were heterogeneous, and were rarely informed by theoretical frameworks relating to family, parenting or child development. Family based interventions may be an important strategy to reduce the effects of smoking for children. There is a need for interventions to be informed by theory relevant to children, parenting and families.

Caregiver characteristics and bereavement needs: Findings from a population study.

BACKGROUND: Globally, most care for people with life-limiting illnesses is provided by informal caregivers. Identifying characteristics of caregivers that may have unmet needs and negative outcomes can help provide better support to facilitate adjustment. AIM: We compared characteristics, expressed unmet needs and outcomes for spousal caregivers, with other caregivers at the end of life, by gender and age. DESIGN: The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey wherein respondents are asked about end-of-life care. SETTING/PARTICIPANTS: Participants were aged over 15 years, resided in households in South Australia and had someone close to them die from a terminal illness in the last 5 years. RESULTS: Of the 1540 respondents who provided hands-on care for someone close at the end of life, 155 were widows/widowers. Bereaved spousal caregivers were more likely to be older, female, better educated, have lower incomes, less full-time work, English as second language, sought help with grief and provided more day-to-day care for longer periods. Spousal caregivers were less likely to be willing to take on caregiving again, less able to 'move on' with life and needed greater emotional support and information about illness and services. The only difference between widows and widowers was older age of spouse in women. Younger spousal caregivers perceived greater unmet emotional needs and were significantly less likely to be able to 'move on'. CONCLUSION: Spousal caregivers are different from other caregivers, with more intense needs that are not fully met. These have implications for bereavement, health and social services.