Improving the Lives of LGBT Older Adults

Although largely invisible until recently, LGBT older adults make up a significant (and growing) part of both the overall LGBT population and the larger 65+ population. While confronted with the same challenges that face all people as they age, LGBT elders also face an array of unique barriers and inequalities that can stand in the way of a healthy and rewarding later life. This report examines these additional challenges and how they make it harder for LGBT elders to achieve three key elements of successful aging: financial security, good health and health care, and social support and community engagement. The report also offers detailed recommendations for improving the lives, and life chances, of LGBT older Americans

Transitioning from caregiving to widowhood

Context Older women commonly assume a caregiving role for their husbands at the end of life and are more vulnerable to poorer health, well-being, and social and economic challenges. Objectives The aim of this study was to ascertain older women\u27s experiences of spousal caregiving at the end of life and the ways in which this experience impacts on the transition to widowhood. Methods Longitudinal, in-depth, semistructured interviews were conducted with older women three times over a one-year period after the death of their husbands. This report focuses on the initial interviews that examined the transition from caregiving to widowhood. Transcripts were analyzed using interpretive phenomenological analysis methods. Participants were community-dwelling women older than 65 years who had recently been caregivers for their husbands who died within the past two years. Results Older women caregivers described their caregiver role as taxing, particularly in light of their own chronic conditions that they failed to prioritize and address. They did not ask for help in managing their roles and health problems, but quietly endured. Hence, they did not communicate their needs or strains explicitly. The degree of perceived adequacy of communication and interaction with health professionals were important factors impacting on their bereavement. Conclusion It is imperative for health professionals to appreciate that older women caregivers may need more supportive interaction and information during the end-of-life caregiving, they may have expectations of communication, and they may deny or fail to focus on their own health issues. A patient/family/carer-centered approach could negate this oversight and improve the outcomes for these women as they transition into widowhood

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

Who Cares? Exploring the Concept of Care Networks for Designing Healthcare Technologies

Dealing with a chronic condition often involves daunting tasks and the participation of multiple people in care. Previous literature has documented collaboration between patients, clinicians, close relatives, friends, and paid carers. However, collaboration in care has been mostly examined as the work of dyads, such as patients and clinicians. In this workshop, we will explore the concept of care networks, which can better account for the numerous human and non-human actors and roles that compose care. We invite designers, researchers, and practitioners to participate in a full-day workshop in which we will reflect on empirical studies and theoretical accounts of care networks, and put forward an agenda for better acknowledging care networks in the research around healthcare technologies and systems

A longitudinal study of older couples coping with chronic conditions

 This study involved a longitudinal investigation of how older couples cope with chronic illness. The study found that one person’s chronic illness affects the wellbeing of both members of the couple. Ensuring that both members of the couple are supported when a chronic illness is experienced is important to optimise the psychological health of this vulnerable cohort of Australians

Theories of Communication and Uncertainty as a Foundation for Future Research on Nursing Practice

As we enter the age of “precision medicine,” we will need “a greater tolerance of uncertainty and greater facility for calculating and interpreting probabilities than” (Hunter, 2016, p. 711) ever before. Nursing scholarship has produced the most widely known theory of uncertainty in illness (Mishel, 1988, 1990), but it emphasizes the psychological state of and deemphasizes communication. Communication scholars have attempted to overcome this deficit, but two of the most prominent of these perspectives, uncertainty management theory (Brashers, 2001) and the theory of motivated information management (Afifi & Morse, 2004), emphasize processes related to information seeking or avoidance in the service of uncertainty reduction, creation, or maintenance; in so doing, they tend to neglect important variations in the meanings of uncertainty. The article reviews these theories and also problematic integration theory, which centers the task of differentiating forms of uncertainty and other problematic meanings and the importance of form-specific adaptation of communication. The paper concludes with an agenda for collaborations between nursing and communication researchers aimed at advancing theory and practice

Oldest-old partner’s experiences of providing end-of-life care: a narrative study

Background Population ageing has rapidly increased the number of people requiring end-of-life care across the globe. Governments have responded by promoting end-of-life in the community. Partly as a consequence, older partners are frequently providing for their partner’s end-of-life care at home, despite potentially facing their own health issues. Little is known about people aged 75 and over who are providing end-of-life care. In order to prepare our health and social care systems for rapidly ageing populations, we need to understand more about this group’s experiences of end-of-life care. Aim To explore the experiences of oldest-old partners looking after their partner approaching end-of-life care. Method First, I conducted a systematic review of the extant literature published since 1985 on the topic. Second, I conducted a longitudinal narrative interview study with 17 couples (19 participants in total). Findings A systematic review of the literature identified a small and only medium quality evidence-base with important empirical and theoretical gaps that require further research. Drawing on interview data, the first key finding was that older partners navigated the carer identity in relation to external and internal factors with not all subsequently embracing the carer identity for themselves. A second key finding is that older partners are actively engaged in integrating care in their capacity as home- keepers, networkers and vigilant visitors. A third key finding highlights the creative ways in which older partners engaged with a pill organizer called a dosette box to make their daily end-of-life caring and medical management bearable. Conclusions The overarching contributions of this thesis challenge notions of the fourth age as merely comprising “decline, passivity and frailty” by emphasizing the activity and creativity of older partners providing end-of-life care. Second, by thinking about oldest-old partners needs and experiences as interconnected, I suggest that policy-makers and health and social care providers will be able to more effectively design services that meet the needs of both oldest-old partners.Woolf Fisher Doctoral Scholarshi

Gender Relations in Hospice Palliative Home Care for Clients with Cancer and Their Family Caregivers: A Critical Analysis

The purpose of this study was to critically examine gender relations in the sociopolitical context of hospice palliative home care for clients with cancer and their family caregivers. Using a critical feminist lens, I employed critical ethnography as a methodology to uncover taken-for-granted attitudes, beliefs, and practices that shape health and health care experiences within the culture of end-of-life at home. The study addressed the following research questions: (a) How do gender relations shape health and health care experiences within the socio-political context of hospice palliative home care for clients with cancer and their caregivers?; (b) How do gendered processes operate to produce gender relations and potential gender inequities in this context?; and (c) What are the social mechanisms and consequences that (re)produce gender (in)equities in hospice palliative home care? Purposeful sampling was used to gather information-rich data from six triads consisting of a client with cancer, his/her family caregiver and primary nurse. I employed ethnographic methods of interview, observation, and document review to gain in-depth knowledge of the patterns and dynamics of gender relations. Twenty-five semi-structured interviews were conducted with clients, family caregivers, and nurses. Observations of nine home visits by the nurse contextualized gender social relations in this setting. Program, professional, and public communication documents were analyzed to understand how institutional discourses shaped gendered attitudes, beliefs, and practices and everyday health and health care experiences in hospice palliative home care. A gender-based analysis revealed that institutional discourses influenced Gendered Expectations and Exemptions, disadvantaging both men and women in this context. Ideological gendered processes of Normalizing Gender Relations and Equalizing Gender Relations supported the everyday practices of Regulating Gender Relations. Finally, socially constructed mechanisms of Preservation/Destruction of Gender Stereotypes and Imbalance/Balance of Power (re)produced gender (in)equities. Overall, gender relations and gender inequities were considered low in priority and status within the culture of hospice palliative home care. Recommendations have been made related to policy, practice, education, and research

Exploration of the Older Adult Informal Caregiver Self-Care Promoting Well-Being

abstract: ABSTRACT This qualitative descriptive study described caregiver recognition of personal and social contextual resources guiding purposeful participation in self-care and well-being. This research builds on health empowerment theory, which conceptualizes health empowerment as an inherent, relational and ongoing process, expressive of health patterning of well-being (Shearer, 2009). By 2060, Americans 65 years and older will number nearly 98 million, more than double that in 2013. The number of older adults aged 85 and older will double from 6 million in 2003, to 14.6 million by 2040 (Health & Human Services, 2014). Sixty-five million adults serve as informal caregivers, many themselves suffering from chronic conditions (National Alliance for Caregiving & AARP, 2009). Current research has examined the burden of caregiving, but little is known about caregiver strengths and resources that foster personal self-care and well-being. Twenty-one older adult informal caregivers participated in focus groups or individual interviews. Length of time as caregivers ranged from one year to more than ten years; 24% of the participants were men. Seventy-six percent of the participants reported having one or more chronic condition. Themes generated from qualitative content analysis provided a basis for validating and extending the health empowerment theory among older adult informal caregivers. Across participants, empowerment reflected recognition of strengths and resources, as well as growth consistent with valued goals facilitating new health patterns and well-being. The health empowerment theory perspective provided a relevant basis for theory-based intervention focused on promoting strengths, abilities and potential among older adults, limiting vulnerability to diminished health and well-being.Dissertation/ThesisDoctoral Dissertation Nursing and Healthcare Innovation 201