The Eldercare Dialogues: A Grassroots Strategy to Transform Long-Term Care

This report is the culmination of observations of 11 Eldercare Dialogues, 15 in-depth interviews with Dialogue organizers and participants, and six focus groups, one with each participating organization. It explores the experiences of caregivers and care recipients in the movement to transform long-term care and ensure that caregivers and recipients have the support they need to age and work with dignity. The full report includes a toolkit so other communities can learn from and replicate the Dialogue process

Optimising support for informal carers of the long-term disabled to enhance resilience and sustainability

Optimising carer resilience has direct benefits to carers, and additional benefits to the overall care support system by reducing dependence on paid care. Executive summary People with severe and chronic disabilities represent a significant proportion of the population who require assistance to live in their own home and be a part of the community. In addition to assistance from the paid carer workforce, this assistance is provided by family, relatives or friends who are not paid or formally trained in the provision of care and support. These informal carers assist with a variety of tasks including activities of daily living, emotional care and support and accessing medical care and ongoing therapy to optimise independence. There are 2.7 million people in Australia who provide informal (unpaid) care to a person with a disability or long-term health condition, of which 770,000 provide the majority of care and support to people with a severe disability. Given their substantial contribution to care provision and the physical, emotional and other impacts of providing care, it is important to understand the experience of informal carers and address their support needs. In recent years, studies have elucidated the substantial effects of providing care on the psychological, physical, social and other impacts of providing care to a person with a long-term disability. There are a range of interventions to mitigate these impacts, which are provided in Australia through a variety of national and local government and nongovernment entities with varying efficacy. Optimising carer resilience has direct benefits to carers, and additional benefits to the overall care support system by reducing dependence on paid care. This NTRI Forum aims to investigate effective strategies for providing support (excluding skills-related education and training, i.e. manual handling and transfers) to informal carers that can help to optimise their resilience, and the sustainability of the long-term disabled. An evidence review of literature identified 25 relevant reviews and primary studies and a further 16 ongoing primary studies. The overall results of reviews of carer support interventions were inconclusive, therefore firm conclusions regarding what works and doesn’t work cannot be made. However, evidence was reported as ‘good’ for educational and psycho-educational interventions, counselling and psychosocial interventions and multicomponent interventions; Evidence for care co-ordination and family support interventions was described as ‘promising’; Evidence for technology-based interventions was conflicting in the setting of Dementia, but more positive in the area of catastrophic injury; Evidence for respite care was described as ‘not strong’, and although benefits were reported, the importance of additional support strategies in conjunction with respite care was emphasised. Similarly, emerging positive evidence in favour of support groups was reported, however additional concurrent support strategies were recommended. Passive information dissemination alone was found to be ineffective. The review also outlined a range of factors to consider in interpreting this evidence and identified implications for practice and research

Hidden Helpers at the Frontlines of Caregiving: Supporting the Healthy Development of Children from Military and Veteran Caregiving Homes

America's wounded, injured, or ill service members and veterans are usually cared for by the service members' or veterans' family members or friends. Research has identified that attending to the well-being of children, the "Hidden Helpers" living in these homes, was a critical next step to enhance support for military caregiving families.The return of service members who sustained or developed an illness or injury because of their military service can be disruptive for families as they learn to support them and establish new norms for operating as a family. Amid this disruption, families are often left wanting help. Caregiving consumes the time and energy of the adult caregiver, and children in many military caregiving homes consequently take on additional responsibilities—ranging from additional household chores to caregiving responsibilities for their injured or ill service member or veteran and responsibilities for siblings who would otherwise have been cared for by the adults in the home.Ultimately, children in military caregiving homes can get lost in their family's response to the needs of the care recipient. The Elizabeth Dole Foundation partnered with Mathematica to examine the impact of caregiving on children growing up in military caregiving homes to help address the national challenge of providing effective support to caregivers of all ages and backgrounds

From Caregiver to Care Partner: A View From The Other Side

Background As the trend towards aging in place continues to grow, unpaid caregivers are facing challenges that include access to relevant and meaningful resources, systemic barriers to efficient two-way communication with healthcare and service organizations, navigating the healthcare system, time management, financial strain, and difficult family dynamics. Objective This project was designed to help Tyze Networks broaden their understanding of how unpaid caregivers, and supportive healthcare and service organizations, perceive the value of formal managed care coordination. Methods This project began with a comprehensive environmental scan of existing research, policies, pathways, and best practices. This was followed by an online survey targeted at Canadian and American healthcare and service organizations and unpaid caregivers of older adults. The online survey link was provided to potential participants through the Centre for Elder Research\u27s (CER) data base, social media, and Tyze\u27s user base. The research team then reached out to volunteers from the survey to conduct semi structured, one-on-one virtual interviews. Results Four key findings were found: 1) Communicating with healthcare and other professionals was ranked as the number one challenge for the survey participants; 2) A total of 66% of unpaid caregivers reported that they provided non-healthcare related support to the care recipient; 3) Over 70% of the respondents stated a dedicated application would help them manage all or most of the care coordination; 4) Carrying out the numerous responsibilities of providing care often significantly impacts the unpaid caregivers\u27 well-being and self-care. Discussion As care partners, caregivers can help by sharing information, participating in aspects of care, and helping to make decisions. They can be spokespersons, advocates, and supporters, especially if care recipients are too ill and unable to do this for themselves. Conclusion The implementation of a formal mechanism to communicate and coordinate care with healthcare and service organizations has the potential to relieve many of the challenges faced by informal caregivers. For these providers, caregivers can provide invaluable timely information and facilitate coordination of care services

Emotional interactions and an ethic of care: caring relations in families affected by HIV and AIDS

In the context of global processes of economic restructuring, the HIV and AIDS epidemic and socio-cultural constructions of care, many women and young people in low-income households have been drawn into caring roles within the family. Drawing on the literature on an ethics of care, emotional geographies and embodiment, this paper examines the emotional dynamics of the caring process in families affected by HIV and AIDS. Based on the perspectives of both ‘caregivers’ and ‘care-receivers’ from research undertaken in Namibia, Tanzania and the UK, we examine the everyday practices of care that women and young people are engaged in and explore how emotions are performed and managed in caring relationships. Our research suggests caregivers play a crucial role in providing emotional support and reassurance to people with HIV, which in turn often affects caregivers' emotional and physical wellbeing. Within environments where emotional expression is restricted and HIV is heavily stigmatised, caregivers and care-receivers seek to regulate their emotions in order to protect family members from the emotional impacts of a chronic, life-limiting illness. However, whilst caregiving and receiving may lead to close emotional connections and a high level of responsiveness, the intensity of intimate caring relationships, isolation and lack of access to adequate resources can cause tensions and contradictory feelings that may be difficult to manage. These conflicts can severely constrain carers' ability to provide the ‘good care’ that integrates the key ethical phases in Tronto's (1993) ideal of the caring process

Systematic review of transition models for young people with long-term conditions: A report for NHS Diabetes.

Aims For many young people with Type 1 diabetes, transition from paediatric to adult care can result in a marked deterioration in glycaemic control. A systematic review assessed the effectiveness of transition models, or components of models, for managing the transition process in young people with long-term conditions, including Type 1 diabetes. This involved identifying (i) the main barriers and facilitators in implementing a successful transition programme, and (ii) the key issues for young people with long-term conditions and professionals involved in the transition process. Methods The following databases were searched from inception to August 2012: MEDLINE, EMBASE, PsychINFO, CINAHL, ASSIA, Social Services Abstracts, Academic Search Complete, Social Science Citation Index, Cochrane and Campbell Libraries. Selected studies included young people aged 11 to 25 diagnosed with long-term conditions who were in transition from paediatric to adult secondary health care services. Results 16 systematic reviews and 13 primary studies were included from 9992 records retrieved. No single transition model was uniquely effective. The most successful transitions centred around: young person-focused; age and developmentally appropriate content and delivery; self-management education; family participation; paediatric and adult collaboration; designated transition clinics; transition co-ordinator; young person’s portfolio; specific professionals training; multidisciplinary approach; structured process embedded in service delivery. There were no distinctive characteristics of condition-specific Type 1 diabetes services. Conclusion This important and timely review summarises the key factors that need to be considered for the development of transition programmes for young people with long-term conditions, including those with Type 1 diabetes

Seeing the wood for the trees. Carer related research and knowledge: A scoping review

This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference

The Shattered Dreams: The Experience of Family Members Caring for a Relative Diagnosed with Schizophrenia: The Case of Amanuel Hospital, Ethiopia

This study examined the experiences of family members caring for a relative diagnosed with schizophrenia in Ethiopia Previous studies indicated that family members providing care for their loved one with schizophrenia experienced many challenges in the course of care-giving Though family members experience both enrichments and challenges in caring for their loved one with mental illness little attention is paid to the comprehensive experiences of family members This study addressed the aforementioned issue and contributed to limited studies on psychiatric conditions in Ethiopia where there are limited services community service organizations or legal frame-works on mental illness The study used a qualitative case study approach In-depth interviews were conducted with eight purposely selected participants Content analysis was used to analyze the data and identify themes The study indicated a variety of impacts of caregiving such as psycho-social and economic as well as enrichments such as progress on the illness teaching their experiences deriving hope from the situation and satisfaction from sharing experiences with others Understanding caregivers experiences may be useful in prompting governments and service providers to invest in education and support programs aimed at helping caregivers to cope with this stress and deal with the problem behaviours associated with the illnes

A Labor of Love: Women\u27s Perspectives on Gender and Identity in Informal Caregiving

The elderly population (adults 65 and over) is larger than at any time in history, thanks to improved access to healthcare, advances in medical technology, and health services focused on addressing the needs of aging adults. However, support for this growing population remains insufficient; the costs of in-home and residential care are high, and consequently, family members often become providers of informal, unpaid care. Presently, there is inadequate literature regarding the academic study of family members providing informal caregiving, especially from a perspective that emphasizes sociological principles and theories. Existing studies of the family caregiver phenomenon show that middle-aged adult daughters comprise the vast majority of those physically caring for an aging parent(s). To better understand this social fact, sociologists can examine the role of the informal caregiver by discussing its relationship to gender and identity. Using a qualitative lens, this study explored the experiences of 12 women who provide informal caregiving services for an aging parent. Participants were recruited using online advertising, purposive sampling, and snowball sampling methods. A semi-structured interview format proved fruitful for gaining insight into the experiences of women caregivers; Charmaz’s model of grounded theory (2010) was utilized to structure and analyze findings. The compiled data suggested two pervasive themes: 1) that caregiving is a gendered experience, particularly in the kinds of activities caregivers provide and in the expectations a caregiver receives from her family and herself, and 2) caregiving necessitates a great deal of identity work, particularly through the management of many social roles, role reversal of parent and child, and the degree to which a caregiver accepts or rejects the caregiving role and how that impacts the self-actualization of the caregiver role, especially as determined by positive or negative experiences with caregiving and with the care recipient