Resilience in middle-aged partners of patients diagnosed with incurable cancer : a thematic analysis

Background : Providing care for patients with advanced cancer is often the responsibility of the partner. Being confronted with an incurable cancer diagnosis can be highly disruptive for the patient's partner and can be considered a potentially traumatic event. However, most caregivers seem to adapt well during the process of providing care. This finding is in line with the concept of resilience in literature: a dynamic process of adapting well, resulting from the interplay between intrinsic and extrinsic resources and risks. Resilience is age-related, with the elderly population being higher in resilience as compared to the younger generation. However, resilience has been understudied in middle-aged caregivers. Aim : To explore what intrinsic and extrinsic resources facilitate or hamper resilience in the middle-aged partner of a patient with incurable cancer. Methods : Nine middle-aged partners of patients who died at home of cancer were selected and interviewed in depth within the first year following the death of their partner. A thematic analysis utilizing an inductive approach was conducted. Findings : Resilience was challenged by the partner's diagnosis of incurable cancer. All participants made use of a set of interacting, caregiver-specific and context-related resources, facilitating a resilient process and leading to positive feelings and even personal growth. The partners demonstrated individual competences: adaptive flexibility, positivism, a sense of self-initiative and adaptive dependency. Furthermore, they relied on their context: cancer-related professionals and relatives. Context and situation interact continuously. The resulting dynamics were based on the context-availability, meaningful relationships and the patient's role. Conclusion : A resilient trajectory results from an interplay between individual and contextual resources. To build resilience in middle-aged partners of patients with incurable cancer, health care professionals should address all available resources. Moreover, they should be aware of being part of the caregiver's context, a complex adaptive system that can be either resilience-supporting or -threatening

Addressing the Health Needs of an Aging America: New Opportunities for Evidence-Based Policy Solutions

This report systematically maps research findings to policy proposals intended to improve the health of the elderly. The study identified promising evidence-based policies, like those supporting prevention and care coordination, as well as areas where the research evidence is strong but policy activity is low, such as patient self-management and palliative care. Future work of the Stern Center will focus on these topics as well as long-term care financing, the health care workforce, and the role of family caregivers

An evaluation of the role of the Admiral Nurse : a systematic evidence synthesis to inform service delivery and research

Two thirds of people with dementia live in the community and receive support from family members. There is a great deal of evidence to suggest that caring for a person with dementia impacts on the health and wellbeing of family carers. Despite this the provision of funded support for family carers is often limited or inadequate. Admiral Nurses, developed in the 1990s, were specifically designed by the charity for dementia (now Dementia UK) to support the family carers of people with dementia. Admiral Nurses are mental health nurses specialising in the care of people with dementia. They are mainly employed by local providers of care for people with dementia but dementia UK is involved in setting up new posts and providing ongoing practice development. There are currently around 100 Admiral Nurses employed in England. In addition the charity has a national helpline provided by experienced Admiral Nurses. The evidence synthesis presented here was commissioned by Dementia UK in order to establish what is currently known about the scope, nature and effectiveness of Admiral Nurse

Collaborating to Create Elder Friendly Communities in New Hampshire: A Scan of the Current Landscape

The fact that the population of the United States is aging is no surprise; the demographic projections are well documented. There have never been as many older adults living as there are today, and this number will only increase. Northern New England is aging more rapidly than the rest of the country, with Vermont, Maine, and New Hampshire having the oldest populations in term of median age (U.S. Census, 2014). New Hampshire is expected to be the fastest aging state in New England through 2030, with nearly one-third of its population being over the age of 65 (Norton, 2011). This phenomenon is anticipated to place substantial pressure on publicly-funded health programs and long-term services and supports in the Granite State. But the story of the aging of the population is not only about increased numbers. As longevity increases, the average age of the older population will see a dramatic increase. The number of persons over the age of 85 in the United States is expected to increase five-fold by 2040. As the possibility for functional limitations and disability increases with age, the need for long-term, formal, and informal supports is expected to increase as the number of older adults, particularly those over the age of 85 increases. In addition, women continue to live longer than men; on average, life expectancy for women is three years longer than for men. These factors create a complex picture of aging, which includes a growing population of older adults, a majority of whom will be women; and a growing number of those over the age of 85, who are more likely to require some type of assistance as they age. It is a mistake to look at our aging population in a singular way. Although we tend to make generalizations about older adults, as a group, they are more physiologically and socially diverse than any other age group (Brummel-Smith & Mosqueda, 2003). As we age, we become more and more diverse, as there are no two people who have had the same life experiences, shaping who we are over our lifetimes. The baby boomers (those born between 1946 and 1964) are likely to be the most diverse cohort of older adults we have seen to date, and it is likely that they will redefine our conception of age and aging. Older adults bring a diverse set of skills, talents, and knowledge that should be tapped as a significant natural resource to support a new and exciting vision of aging

Evaluation of the Pathways Palliative Care Program at the Denver Hospice

As the patterns of morbidity and mortality in the United States shift toward chronic illness requiring the need for quality continuous care over extended periods of time, more research has been devoted to end-of-life care. The purpose of this study was to evaluate the Pathways palliative care program at the Denver Hospice as seen through the eyes of patient caregivers. Nine caregivers were interviewed in order to determine their perceptions of the Pathways program and a thematic analysis of their responses was performed. Results of the thematic analysis, as confirmed by a second reviewer, yielded very positive feelings towards the Pathways program (Cohen’s Kappa = 0.862). Respondents continually stated a deep sense of having a burden lifted with the knowledge that help as a phone call away and that the help would come quickly, and this peace of mind prevented the majority of the caregivers from helplessly taking their loved one to the emergency room. Overall, all nine of the caregivers were very impressed with the Pathways program, and in particular, the Pathways staff

Living at home with dementia: a client-centered program for people with dementia and their caregivers

Thesis (O.T.D.)--Boston UniversityThe number of elderly Americans is increasing rapidly, and dementia is prevalent within this population, especially among the growing group of people over the age of 90 (National Institutes of Health, 2011; Plassman, et al., 2007). The majority of elderly people, including many with dementia, report that they would like to stay in their own homes, which is cost effective for the family and community (Keenan, 2010; Alzheimer's Association, 2012). In addition, people with dementia who live at home are happier, safer, and more independent than those who have been placed into another setting (Alzheimer's Society, 2013). However, they present with a variety of health and safety concerns which have an impact on both their own and their caregivers' quality of life (Allan, et al., 2009; Etters, et al., 2007, Gitlin, 2010). Described in this doctoral project is a caregiver- and client-centered program geared towards delaying or even avoiding long-term care placement of people with dementia by helping to increase client tranquility, independence, and safety, therefore decreasing daily challenges and caregiver feelings of burden. Through this intervention, caregivers will be empowered with skills and strategies with which to engage and support their loved one with dementia, as they are educated regarding the following elements: methods for promoting autonomy in self-care; ways of incorporating meaningful activity into the daily routine; methods for increasing home safety; and strategies for challenging behaviors. This program incorporates a personalized approach, the inclusion of meaningful activity, safe and effective strategies for daily tasks, and an introduction to technology aides and adaptive equipment. A thorough review of the literature was completed in order to ascertain the most effective strategies for addressing the problems affecting informal home caregivers. Best practices are incorporated into the group and individual session structure, and included is a detailed information packet for clients with guidance regarding each of the 14 topics included in the program: information about dementia; fall prevention at home; self-care tasks; successful mealtimes; cooking and kitchen safety; medication management; using the telephone/emergency assistance; wandering and getting lost; rummaging, hiding, and hoarding solutions; sleep strategies; meaningful activity; the preferences worksheet; life story books; and useful resources

What does it take to make integrated care work? A ‘cookbook’ for large-scale deployment of coordinated care and telehealth

The Advancing Care Coordination & Telehealth Deployment (ACT) Programme is the first to explore the organisational and structural processes needed to successfully implement care coordination and telehealth (CC&TH) services on a large scale. A number of insights and conclusions were identified by the ACT programme. These will prove useful and valuable in supporting the large-scale deployment of CC&TH. Targeted at populations of chronic patients and elderly people, these insights and conclusions are a useful benchmark for implementing and exchanging best practices across the EU. Examples are: Perceptions between managers, frontline staff and patients do not always match; Organisational structure does influence the views and experiences of patients: a dedicated contact person is considered both important and helpful; Successful patient adherence happens when staff are engaged; There is a willingness by patients to participate in healthcare programmes; Patients overestimate their level of knowledge and adherence behaviour; The responsibility for adherence must be shared between patients and health care providers; Awareness of the adherence concept is an important factor for adherence promotion; The ability to track the use of resources is a useful feature of a stratification strategy, however, current regional case finding tools are difficult to benchmark and evaluate; Data availability and homogeneity are the biggest challenges when evaluating the performance of the programmes

General practice palliative care: Patient and carer expectations, advance care plans and place of death-a systematic review

Background: With an increasing ageing population in most countries, the role of general practitioners (GPs) and general practice nurses (GPNs) in providing optimal end of life (EoL) care is increasingly important. Objective: To explore: (1) patient and carer expectations of the role of GPs and GPNs at EoL; (2) GPs’ and GPNs’ contribution to advance care planning (ACP) and (3) if primary care involvement allows people to die in the place of preference. Method: Systematic literature review. Data sources: Papers from 2000 to 2017 were sought from Medline, Psychinfo, Embase, Joanna Briggs Institute and Cochrane databases. Results: From 6209 journal articles, 51 papers were relevant. Patients and carers expect their GPs to be competent in all aspects of palliative care. They valued easy access to their GP, a multidisciplinary approach to care and well-coordinated and informed care. They also wanted their care team to communicate openly, honestly and empathically, particularly as the patient deteriorated. ACP and the involvement of GPs were important factors which contributed to patients being cared for and dying in their preferred place. There was no reference to GPNs in any paper identified. Conclusions: Patients and carers prefer a holistic approach to care. This review shows that GPs have an important role in ACP and that their involvement facilitates dying in the place of preference. Proactive identification of people approaching EoL is likely to improve all aspects of care, including planning and communicating about EoL. More work outlining the role of GPNs in end of life care is required