Social capital for carers of patients with advanced organ failure: a qualitative exploration of stakeholders' perspectives.

BACKGROUND: Carers of patients with advanced organ failure (AOF) experience a tremendous caregiving burden. Social capital utilizes the internal strength of a community to support its members and may provide carers with comprehensive support. This study aimed to identify the different sources of social capital that can support carers of patients with AOF from the perspectives of stakeholders. METHOD: A descriptive qualitative study was conducted in community settings from April 2021 to May 2022. Stakeholders from medical social work departments, self-help groups, and non-governmental organizations were recruited, while some community members were invited through online media platforms. Individual semi-structured interviews were conducted using an interview guide. Interview transcripts were analyzed using a qualitative description approach. In total, 98 stakeholders, including 25 carers, 25 patients, 24 professionals, and 24 community members, were recruited using purposive and snowball sampling. RESULTS: Six categories about social capital for carers emerged, namely, carer attributes, the community, social care services, healthcare services, information, and policies. While the attributes of carers and their relationships with care recipients had a significant influence on caregiving, support from different groups in the community, such as neighbors and employers, was valued. Good communication of information about caregiving and social services was emphasized as being helpful by carers and other stakeholders. While carers presented a need for various healthcare and social care services, several features of these services, including their person-centeredness and proactive reach, were deemed useful. At the societal level, policies and research on comprehensive supportive services are warranted. The different sources of social capital constitute a multi-layer support system in the community. CONCLUSION: Carers can utilize personal attributes, interpersonal relationships, community resources, and societal contexts to enhance their caregiving. While this system can serve as a framework for building carer-friendly communities, interventions may be required to strengthen some aspects of social capital.

Who cares for the carer? Codesigning a carer health and wellbeing clinic for older care partners of older people in Australia.

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

Capturing what matters: updating NICE methods guidance on measuring and valuing health.

In July 2019, the National Institute for Health and Care Excellence (NICE) initiated a major review of its health technology evaluation methods to update its methods guide. This update has recently concluded with the publication of its health technology evaluation manual in January 2022. This paper reports the methods and findings of the review in relation to the recommended approach to use for the measurement and valuation of health-related quality of life (HRQoL) in submissions to NICE. Issues related to (i) the methods to use when NICE's preferred measure (EQ-5D) is not appropriate or not available; (ii) adjusting health state utility values over time to account for age; (iii) measuring and valuing HRQoL in children and young people; and (iv) including carers' QoL in economic evaluations were included in this review. This commentary summarises the methods used to undertake the review, its findings, and the changes to NICE methods that were proposed based on these findings. It also outlines topics where further research is needed before definitive methods guidance can be issued. The broad proposals described here were subject to a public consultation in 2020 and a further consultation on the updated methods guidance was completed in October 2021 before the publication of the manual in January 2022.

Optimizing the integration of family caregivers in the delivery of person-centered care: evaluation of an educational program for the healthcare workforce.

BACKGROUND: While family caregivers provide 70-90% of care for people living in the community and assist with 10-30% of the care in congregate living, most healthcare providers do not meaningfully involve family caregivers as partners in care. Recent research recommends that the healthcare workforce receive competency-based education to identify, assess, support, and partner with family caregivers across the care trajectory. OBJECTIVE: This paper reports a mixed-methods evaluation of a person-centered competency-based education program on Caregiver-Centered Care for the healthcare workforce. METHODS: This foundational education was designed for all healthcare providers and trainees who work with family caregivers and is offered free online (caregivercare.ca). Healthcare providers from five healthcare settings (primary, acute, home, supportive living, long-term care) and trainees in medicine, nursing, and allied health were recruited via email and social media. We used the Kirkpatrick-Barr health workforce training evaluation framework to evaluate the education program, measuring various healthcare providers' learner satisfaction with the content (Level 1), pre-post changes in knowledge and confidence when working with family caregivers (Level 2), and changes in behaviors in practice (Level 3). RESULTS: Participants were primarily healthcare employees (68.9%) and trainees (21.7%) and represented 5 healthcare settings. Evaluation of the first 161 learners completing the program indicated that on a 5-point Likert scale, the majority were satisfied with the overall quality of the education (Mean(M) = 4.69; SD = .60). Paired T-tests indicated that out of a score of 50, post-education changes in knowledge and confidence to work with family caregivers was significantly higher than pre-education scores (pre M = 38.90, SD = 6.90; post M = 46.60, SD = 4.10; t(150) = - 16.75, p < .0001). Qualitative results derived from open responses echoed the quantitative findings in satisfaction with the education delivery as well as improvements in learners' knowledge and confidence. CONCLUSION: Health workforce education to provide person-centered care to all family caregivers is an innovative approach to addressing the current inconsistent system of supports for family caregivers. The education program evaluated here was effective at increasing self-reported knowledge and confidence to work with family caregivers.

Inclusion of Carer Health-Related Quality of Life in National Institute for Health and Care Excellence Appraisals.

OBJECTIVES: Health interventions for patients can have effects on their carers too. For consistency, decision makers may wish to specify whether carer outcomes should be included. One example is the National Institute for Health and Care Excellence (NICE), whose reference case specifies that economic evaluations should include direct health effects for patients and carers where relevant. We aimed to review the methods used in including carer health-related quality of life (HRQL) in NICE appraisals. METHODS: We reviewed all published technology appraisals (TAs) and highly specialized technologies (HSTs) to identify those that included carer HRQL and discussed the methods and data sources. RESULTS: Twelve of 414 TAs (3%) and 4 of 8 HSTs (50%) included carer HRQL in cost-utility analyses. Eight were for multiple sclerosis, the remainder were each in a unique disease area. Twelve of the 16 appraisals modeled carer HRQL as a function of the patient's health state, 3 modeled carer HRQL as a function of the patient's treatment, and 1 included family quality-adjusted life year (QALY) loss. They used 5 source studies: 2 compared carer EQ-5D scores with controls, 2 measured carer utility only (1 health utilities index and 1 EQ-5D), and 1 estimated family QALY loss from a child's death. Two used disutility estimates not from the literature. Including carer HRQL increased the incremental QALYs and decreased incremental cost-effectiveness ratios in all cases. CONCLUSIONS: The inclusion of carer HRQL in NICE appraisals is relatively uncommon and has been limited by data availability.

Assisted-Transport Caregiving and Its Impact Towards Carer-Employees.

Assisted-transport is the most common informal caregiving task and will be in greater demand due to an aging society. One population group that predominantly covers the demands of informal eldercare while working full time in the paid labor force are carer-employees. The developing carer-employee literature addresses: the health risks for carer-employees; employers of carer-employees, and policy/program interventions. Little research focuses on assisted-transport, which impacts health. This study begins to fill the gap by addressing the following objectives: (1) develop a socioeconomic profile of carer-employees performing assisted-transport tasks; (2) identify any gender differences based on the profile, particularly employment and caregiving traits; (3) examine behavioral factors that increase the likelihood of conducting assisted-transport caregiving, and; (4) determine whether carer-employees are more likely to be overwhelmed from assisted-transport caregiving. Descriptive statistics and logistic regression were used to analyze Statistics Canada's General Social Survey Cycle 26: Caregiving dataset (2012). Compared to general carer-employees, assisted-transport carer-employees have higher education, household income, and caregiving hours per week and feel more tired and overwhelmed from caregiving. Gender gaps exist based on socioeconomic and caregiving characteristics. Logit results show that female carer-employees are more likely to perform assisted-transport caregiving and feel overwhelmed. Carer-employees conducting assisted-transport caregiving are more likely to be overwhelmed than those who do not.

Implementing Aging in Place in Hong Kong: Meeting the Needs and Aspirations of Older Adults and Their Caregivers Living in Private Housing.

A policy of aging in place should be accompanied by physical and social environments that support healthy aging. This article describes how a property development company in Hong Kong sought to elicit the views of older people and their caregivers towards elderly services through a market research company, using questionnaire surveys followed by focus groups. Over 80% of all participants rated healthy dietary habits and exercise, maintaining mental and spiritual health, and maintaining a generally healthy lifestyle as important. Current health concerns include long waiting times for care at public hospitals, lack of carer should dependency occur, and lack of information about what services are available in the community. Interests in services in their neighbourhood include medical care (82%), healthy lifestyle activities (66%), and home care support (55%). There was considerable interest in the provision of services that improve brain and physical function, as well as general health checks. Carers were willing to pay more for services compared with older adults themselves. The findings inform the development of pilot models of aging in place as a sustainable financial model.

Supporting family carers in general practice: a scoping review of clinical guidelines and recommendations.

BACKGROUND: Increasing numbers of family carers are providing informal care in community settings. This creates a number of challenges because family carers are at risk of poor physical and psychological health outcomes, with consequences both for themselves and those for whom they provide care. General Practitioners (GPs), who play a central role in community-based care, are ideally positioned to identify, assess, and signpost carers to supports. However, there is a significant gap in the literature in respect of appropriate guidance and resources to support them in this role. METHODS: A scoping review was undertaken to examine clinical guidelines and recommendations for GPs to support them in their role with family carers. This involved a multidisciplinary team, in line with Arksey & O'Malley's framework, and entailed searches of ten peer-reviewed databases and grey literature between September-November 2020. RESULTS: The searches yielded a total of 4,651 English language papers, 35 of which met the criteria for inclusion after removing duplicates, screening titles and abstracts, and performing full-text readings. Ten papers focused on resources/guidelines for GPs, twenty were research papers, three were review papers, one was a framework of quality markers for carer support, and one was an editorial. Data synthesis indicated that nine (90%) of the guidelines included some elements relating to the identification, assessment, and/or signposting of carers. Key strategies for identifying carers suggest that a whole practice approach is optimal, incorporating a role for the GP, practice staff, and for the use of appropriate supporting documentation. Important knowledge gaps were highlighted in respect of appropriate clinical assessment and evidence-based signposting pathways. CONCLUSION: Our review addresses a significant gap in the literature by providing an important synthesis of current available evidence on clinical guidelines for GPs in supporting family carers, including strategies for identification, options for assessment and potential referral/signposting routes. However, there is a need for greater transparency of the existing evidence base as well as much more research to evaluate the effectiveness and increase the routine utilisation, of clinical guidelines in primary care.

The quality of life of older carers and the people they support: An international scoping review.

Older carers, aged 65 or over, may find it difficult to balance caring while maintaining their own health and quality of life (QoL). For older carers, especially, established approaches to separately identifying, assessing and addressing carers' and care-recipients' needs, may not fully consider the interwoven nature of caregiving relationships and the ways in which community-based social care services may impact the QoL of both parties. The purpose of this scoping review is to identify and synthesise what is already known about the QoL of older carers and care-recipients, considered together, which we refer to as 'dyadic QoL'; both in general, and with regard to the impact of community-based social care. We searched 16 electronic databases and grey literature in October and November 2020. A total 822 items were identified and reviewed based on the inclusion criteria: focusing on older carers and care-recipients from a dyadic perspective and their QoL or well-being, published since 2000 and in English. Fourteen papers were thematically analysed, and the findings were presented under two themes. First, the value of applying an overarching conceptual framework of 'interdependence theory' in understanding dyadic QoL, including two broad approaches: dyadic data analysis and the dynamics of caring relationships. Second, a number of papers highlighted the role of support from family, friends and neighbours and community-based social care services in promoting QoL outcomes of caring dyads. This review emphasised that considering the QoL of carers and care-recipients, together, would potentially improve the understanding of care needs, provision of care services and QoL outcomes. However, there is limited and fragmentary evidence about dyadic QoL or the impact of social care services on dyadic QoL outcomes. Future work is required to explore and evaluate the use of a dyadic approach in social care practice and research.

[A centre for carers, a place of information and sharing]. / La Maison des Aidants, un lieu d'information et de partage.

Carers are often a vulnerable population, in need of support. The role of the Maison des Aidants is to guide them, to give them the opportunity to talk and to help them find ways to improve their situation. The Maison des Aidants also aims to train professional carers in providing support to family carers. Establishing good cooperation between family carers and professional caregivers can help to improve the patient's quality of life.

[Carers and the multi-disciplinary hospital-at-home team]. / Les aidants et l'équipe pluriprofessionnelle à domicile.

The home hospitalisation of patients provides the nursing team with a global perspective of their environment. Allowing the patient to remain at home is often only possible thanks to the presence and commitment of the carers. They need support adapted to their specific needs in order to be able to continue to perform their role. The coordination of the hospital-at-home teams is essential in this context.

[The French carers' association, daily support]. / L'Association française des aidants, un soutien quotidien.

Structuring the help for carers ensures they can be offered adapted support. A policy plan involving all the organisations who provide this type of assistance has resulted in the creation of get-togethers called "Les Cafés des Aidants" ("Carers' Cafés"), where people caring for a family member with any type of disability can talk and share their experience.