Living with mesothelioma: A systematic review of patient and caregiver psychosocial support needs.

OBJECTIVE: Practice guidelines emphasize the importance of investigating psychosocial distress in mesothelioma patients and family caregivers. We aimed to synthesize research on the psychosocial support needs of mesothelioma patients and their family caregivers. METHODS: We conducted a systematic review with a narrative synthesis and quality assessment. The review process adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. RESULTS: MEDLINE, EMBASE, Scopus, PsychArticles, and PsycINFO were searched until December 2020 and 37 studies in English met inclusion criteria. Most (n = 24) included mesothelioma patients as a very small proportion of their cancer samples. A narrative synthesis was conducted on the 13 studies including only mesothelioma patients (n = 297) and/or caregivers (n = 82). Patients and caregivers want improvements in the diagnosis delivery and access to palliative care. Patients want emotional support, patient-centered treatment, improved information about illness progression and death, and to meet others with mesothelioma. Caregivers want one-on-one practical and emotional support. Study quality varied. CONCLUSIONS: Few studies focus on the psychosocial support needs relevant to mesothelioma. Mesothelioma patients and family caregivers highlight targeted psychosocial care as an unmet need. PRACTICE IMPLICATIONS: Efforts are required to design and test psychosocial interventions for this vulnerable and overlooked group. PROTOCOL REGISTRATION: PROSPERO (registration number CRD42020167852).

Investigating mechanisms for recruiting and retaining volunteers: The role of habit strength and planning in volunteering engagement.

Volunteering rates in high-income countries are declining. Most research into understanding volunteering engagement has focused on conscious processes (e.g., motives), with little exploration of non-conscious antecedents of volunteering engagement. Adopting a new line of investigation, this research used temporal self-regulation theory to investigate the influence of both rational and automatic processes on volunteering engagement. Two related studies using different methodologies were conducted to investigate the influence of intention, planning, and habit strength on volunteering engagement. In both studies, intention and habit strength were significant predictors of volunteering engagement, with planning only significantly predicting volunteering engagement in Study 1. It was also found, in Study 2, that habit strength moderated the intention-behavior relationship. These findings highlight that both rational and automatic processes play a part in volunteering engagement and have implications for recruiting and retaining volunteers.

Motivations for volunteering time with older adults: A qualitative study.

Improved health, wellbeing and quality of life are associated with older adults living well at home. Enabling older adults to remain at home requires organisations to consider different workforce models to support these initiatives. Volunteers are often used by organisations providing such services. However, given the changing nature of the volunteer industry, volunteer recruitment and retention practices must be better understood. This study sought to understand individuals' motivations to volunteer in aged care home support. Eighteen volunteers were recruited from not-for-profit aged support organisations in Perth, Western Australia. Semi-structured interviews were conducted, and five themes were thematically interpreted: What's Important to Me?, Learning and Growth, Somewhere to Belong, Meet Me in the Middle, and Not Just a Number. Fulfilling volunteers' desires for interest, social connection, self-growth, recognition, and support appeared conducive to positive volunteering experiences. These findings may suggest avenues to capture and retain volunteers in aged care home support.

Creating person-centred support for people with intellectual disabilities at the end of life: An Australian qualitative study of unmet needs and strategies.

BACKGROUND: People with intellectual disabilities at the end of life are at risk of receiving inadequate and inequitable end-of-life care. This study explores their unmet needs, opportunities for person-centred care and experiences of health service use. METHODS: Qualitative interviews with 26 experienced health professionals and carers were used to explore their patients' and residents' unmet needs and end-of-life care options and to outline strategies to support them. RESULTS: A range of challenges and unmet needs experienced by people with intellectual disabilities are presented in themes: (1) accommodation setting at the end of life: dying 'at home'; (2) personal factors and networks: a circle of support; (3) end-of-life medical care and decision-making. Strategies to facilitate good end-of-life care and a model of care are presented. CONCLUSIONS: Well-prepared and collaborative disability and health service workforces are needed, together with flexible and adequate end-of-life funding to ensure compassionate and person-centred care.

Matching response to need: What makes social networks fit for providing bereavement support?

The objectives of this study were to explore the goodness of fit between the bereaved peoples' needs and the support offered by their social networks; to ascertain whether this support was experienced as helpful or unhelpful by bereaved people; and to explore both the types of social networks that offer effective support and the characteristics of the communities that encourage and nurture such networks. This study was based on qualitative interviews from twenty bereaved people, in Western Australia, interviewed in 2013. A framework analysis of these interviews was undertaken using a deductive approach based on the goodness of fit framework. Much of this support is provided informally in community settings by a range of people already involved in the everyday lives of those recently bereaved; and that support can be helpful or unhelpful depending on its amount, timing, function and structure. Improving the fit between the bereaved person's needs and the support offered may thus involve identifying and enhancing the caring capacity of existing networks. An important strategy for achieving this is to train community members in mapping and developing these naturally occurring networks. Some such networks will include relationships of long standing, others may be circles of care formed during a period of caring. Peer support bereavement networks develop from these existing networks and may also recruit new members who were not part of the caring circle. The findings endorse social models of bereavement care that fit within a public health approach rather than relying solely on professional care. As exemplified by Compassionate Communities policies and practices, establishing collaboration between community networks and professional services is vital for effective and sustainable bereavement care.

Palliative care for people with schizophrenia: a qualitative study of an under-serviced group in need.

BACKGROUND: People with schizophrenia are at risk of receiving poorer end of life care than other patients. They are often undertreated, avoid treatment and are about half as likely to access palliative care. There are limited options for end of life care for this under-serviced group in need. This study aims to address the paucity of research by documenting possible need, experiences of health care service use and factors affecting palliative care use for people with schizophrenia who have advanced life limiting illness. METHODS: Semi-structured interviews were undertaken with 16 experienced health professionals caring for people with schizophrenia in Western Australia. The interviews focussed on their perceptions and experiences of end of life care, their patients' unmet needs, palliative care options, and suggested services to support this vulnerable group and improve health care provision. The research used a qualitative design and thematic analyses. RESULTS: The participants all advocated strongly for their patients and recognised their extreme vulnerability. They identified a range of challenges and unmet needs experienced by people with schizophrenia at the end of life including: illness factors such as the impact of schizophrenia on information processing and communication; social factors such as stigma, isolation and the absence of a carer; and health care factors such as late diagnosis, delayed access to care, and mismanagement in care. Four themes were organised into two domains with the first exploring the individual and social circumstances of people with schizophrenia, including the challenges they experience in the health care system. The second domain covers themes that discuss barriers and facilitators to people with schizophrenia receiving palliative care and key features in palliative care provision, including recognising declining health, communication and planning, and collaboration and capacity building in the broader health, mental health and palliative care sectors. CONCLUSIONS: To ensure people with schizophrenia are well supported at the end of life a model of palliative care is required that offers both specialised services and capacity building within the pre-existing health workforce. Resources are needed to address the stigma and lack of services faced by this vulnerable group.

The Value of a Gardening Service for the Frail Elderly and People With a Disability Living in the Community.

Little is known about the significance of gardening services for frail elderly people. This study explored the value of a gardening service for frail older people and people with a disability living in the community. Using qualitative and quantitative data collected from pre-gardening (n = 38) and post-gardening service delivery interviews (n = 35) and the Housing Enabler, the value of a gardening service was examined. Findings suggest that the service had a positive impact on the independence and emotional well-being of frail aged people and younger people with a functional disability, with little impact on physical health. Results indicate that gardening services should be fundamental to planning for these populations to remain or return to living in the community.

Evaluation of a healthy ageing intervention for frail older people living in the community.

AIM: To evaluate a healthy ageing intervention in the form of a program of physical and social activity for frail older people living in the community. METHODS: New members of an activity program were surveyed before and after attending the program and interviewed face-to-face prior to the program, immediately after the program and through a telephone interview two months following the program. RESULTS: Program participants reported better health, social function and mental well-being; greater engagement in household and leisure activities; and increased enjoyment and confidence through participating in the program. Some participants could not attend the whole program due to poor health or difficulties securing transport. CONCLUSION: The results suggest the program was successful in enhancing the health and well-being of those community-dwelling older adults who stayed in the program. However, the high drop-out rate suggests that flexibility is required in community-based healthy ageing programs.