Kathryn Almack - Academia.edu (original) (raw)

Papers by Kathryn Almack

Families, Relationships and Societies

Family' is an important concept in end-of-life care policy and practice but familial relationship... more Family' is an important concept in end-of-life care policy and practice but familial relationships are rarely considered, beyond a bio-medical framework and/or as a resource for informal care. Furthermore, bereavement and grief have largely come to be seen as the domain for psychiatry and psychology. I argue for an exploration of death, dying and bereavement as experiences within which everyday family practices are embedded and enacted. In doing so, I draw on experiences, in an English setting, relating to my parents' coming to the end of their lives. Morgan's work is central to this endeavour and I apply aspects of his work to this important but understudied area of family sociology. Building on insights from this important body of work, I argue this can help to develop richer, more nuanced understandings of the everyday familial experiences of dying and death bound up in social, material and cultural contexts.

Older Lesbian, Gay, Bisexual and Trans People, 2018

Introduction This chapter addresses a particular gap in knowledge concerning the end of life care... more Introduction This chapter addresses a particular gap in knowledge concerning the end of life care needs and experiences in the lives of older LGBT people. This adds to a more general body of research which has focused on ageing and the broader health and social care issues for older LGBT people (albeit this has primarily focused on gay men's and lesbian health and social care needs). The chapter provides a brief overview of end of life care in England and Wales and then addresses issues relating to end of life care for older LGBT people and the gaps in our knowledge in this area. We then draw on findings from the first major UK study of end of life care needs and experiences in the lives of older LGBT people. Our main focus here is to highlight and discuss concerns identified relating to care at home and support from family and friends that respondents envisaged being able to call upon towards the end of life in the UK. Our findings suggest that diverse needs are not being met or not offering adequate provision for older LGBT people. However, we are also able to highlight positive examples to suggest ways forward to develop equitable service provision that addresses core principles of dignity and respect for all.

Palliative Medicine, 2021

Background: Families and professionals caring for children with life-limiting conditions face dif... more Background: Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, however little is known about factors influencing these processes. Aim: To explore the communication strategies used in shared decision-making for children with life-limiting conditions. Design: A longitudinal, qualitative, multiple-case study. Cases were centred around the child and parent/carer(s). Most cases also included professionals or extended family members. Data from interviews, observations and medical notes were re-storied for each case into a narrative case summary. These were subject to comparative thematic analysis using NVivo11. Setting/participants: Eleven cases recruited from three tertiary hospitals in England. 23 participants were interviewed (46 interviews). Cases were followed for up to 12 months between December 2015 and January 2017. 72 observations were conducted and the medical not...

Narratives of Parental Death, Dying and Bereavement, 2021

Dad was 89 when he died on 11 September 2011. This was at the end of nearly seven weeks in hospit... more Dad was 89 when he died on 11 September 2011. This was at the end of nearly seven weeks in hospital. First, an emergency admission by ambulance to a surgical ward in a National Health Service District General Hospital. He stayed there for about five to six weeks until he was moved to a local Community Hospital, where he died. While thinking about and planning this chapter, I listened to several podcasts about death, dying and bereavement, which I follow. You, Me & The Big C and On the Marie Curie Couch are favourites for my two-plus hour commute to work. Greg Wise and Alison Steadman have been on On the Marie Curie Couch: Greg talking about his sister's death and caring for her at home for the last three months of her life; Alison talking about her mother's death, and the great care she received in a hospice setting. Listening to them made me feel so sad to think of Dad spending those last weeks in hospital. Jess Mills, daughter of Baroness Tessa Jowell, who died from an

Lesbian, gay, bisexual and trans+a (LGBT+) people report poorer health than the general populatio... more Lesbian, gay, bisexual and trans+a (LGBT+) people report poorer health than the general population and worse experiences of healthcare particularly cancer, palliative/end-of-life, dementia and mental health provision. This is attributable to: a) social inequalities, including ‘minority stress’; b) associated health-risk behaviours (e.g. smoking, excessive drug/alcohol use, obesity); c) loneliness and isolation, affecting physical/mental health and mortality; d) anticipated/experienced discrimination and e) inadequate understandings of needs among healthcare providers. Older LGBT+ people are particularly affected, due to the effects of both cumulative disadvantage and ageing. There is a need for greater and more robust research data to support growing international and national government initiatives aimed at addressing these health inequalities. We identify seven key research strategies: 1) Production of large datasets; 2) Comparative data collection; 3) Addressing diversity and int...

This article aims to give an overview of theoretical models, measures and empirical findings on t... more This article aims to give an overview of theoretical models, measures and empirical findings on the quality of life in very old age. A good quality of life (QOL) is today seen as a key individual objective. Accordingly, most psychosocial interventions are directed at enhancing the quality of life of old and very old people – quality of life has become a key concept for the health care. Existing concepts of quality of life however differ widely and are based on different conditions and assumptions. Nevertheless there is broad agreement that quality of life is a multidimensional, holistic construct, which should be discussed in an interdisciplinary manner and from many perspectives. Currently, three main general approaches to measuring QOL can be distinguished: (1) the “objective” approach that infers QOL of an individual from the outside (oQOL), e.g. living conditions via measurement of health impairments; (2) the “subjective” approach which measures an individual’s subjective interp...

Health & Social Care in the Community, 2021

Although literature on postdiagnostic support for people affected by young onset dementia acknowl... more Although literature on postdiagnostic support for people affected by young onset dementia acknowledges financial concerns, this topic has remained underresearched. The aim of this study was to explore the financial impact of a diagnosis of young onset dementia on individuals and families. An online survey, comprising binary yes/ no, multiple-response and open-ended questions, was codesigned with people living with young onset dementia. The survey was promoted via networks and online platforms. Data were collected from August to October 2019. Survey respondents across the United Kingdom (n = 55) who had received a diagnosis of young onset dementia were aged between 45 and 64, were at different stages of dementia and had been diagnosed with thirteen different types of dementia. Of the 55 respondents, 71% (n = 39) had received assistance from family members when completing the survey. The main financial impact of a diagnosis of young onset dementia resulted from premature loss of income and reduced and often deferred pension entitlements. In some cases, care-costs became unaffordable. Lack of clarity of processes and procedures around needs assessments, carers' assessments and financial assessments by different organisations resulted in some families having to ask for legal advice and, in some cases, involved lengthy appeal processes. Future research needs to involve Adult Social Care and Third Sector organisations to help codesign and test financial management interventions to support people affected by this progressive health condition.

International Journal of Environmental Research and Public Health, 2021

Health inequalities are differences in health experiences and outcomes which arise through the ev... more Health inequalities are differences in health experiences and outcomes which arise through the everyday circumstances of people’s lives and the appropriateness of the systems put in place to support them [...]

Journal of Epidemiology and Community Health, 2020

Lesbian, gay, bisexual and trans+ (LGBT+) people report poorer health than the general population... more Lesbian, gay, bisexual and trans+ (LGBT+) people report poorer health than the general population and worse experiences of healthcare particularly cancer, palliative/end-of-life, dementia and mental health provision. This is attributable to: (a) social inequalities, including ‘minority stress’; (b) associated health-risk behaviours (eg, smoking, excessive drug/alcohol use, obesity); (c) loneliness and isolation, affecting physical/mental health and mortality; (d) anticipated/experienced discrimination and (e) inadequate understandings of needs among healthcare providers. Older LGBT+ people are particularly affected, due to the effects of both cumulative disadvantage and ageing. There is a need for greater and more robust research data to support growing international and national government initiatives aimed at addressing these health inequalities. We identify seven key research strategies: (1) Production of large data sets; (2) Comparative data collection; (3) Addressing diversity ...

Journal of Sociology, 2020

This article introduces a special edition of the Journal of Sociology that aims to interrogate th... more This article introduces a special edition of the Journal of Sociology that aims to interrogate the ongoing entrenchment of hetero- and cis-normative borders, and the consequential manifestations of power, violence and in/justice experienced by lesbian, gay, bisexual, transgender and queer (LGBTQ) people in their relationships and family lives. The articles in this issue all explore different forms of violence, injustice, and persecution that continue to exist despite the success of many social justice campaigns in recent years for LGBTQ people. This article provides a synopsis of the research in this collection – research which demonstrates and expands our understandings of the complexities of LGBTQ lives around the globe negotiating empowerment, safety, and justice. We highlight the ongoing importance of this work as LGBTQ people around the world are experiencing the disproportionate impact of the Covid-19 pandemic.

International Journal of Environmental Research and Public Health, 2020

Internationally, there is increasing recognition that lesbian, gay, bisexual and trans (LGBT) pop... more Internationally, there is increasing recognition that lesbian, gay, bisexual and trans (LGBT) populations experience substantial public health inequalities and require interventions to address these inequalities, yet data on this population is often not routinely collected. This paper considers the case study of the UK, where there are proposals to improve government and health data collection on LGBT populations, but also a degree of apparent uncertainty over the purpose and relevance of information about LGBT status in healthcare. This paper applies a health capabilities framework, arguing that the value of health information about LGBT status should be assessed according to whether it improves LGBT people’s capability to achieve good health. We draw upon 36 older LGBT people’s qualitative accounts of disclosing LGBT status within UK general practice healthcare. Participants’ accounts of the benefits and risks of disclosure could be mapped against multiple domains of capability, i...

Sexualities, 2020

This article reports on findings from the quantitative phase of a two-year research project desig... more This article reports on findings from the quantitative phase of a two-year research project designed to explore end-of-life care experiences and needs of lesbian, gay, bisexual and transgender people. We draw on a subset of the sample (N = 180/237) to analyse the relationship between advance care planning, sexual orientation, living arrangements and self-rated health. The results contribute to a growing body of evidence on how sexual minorities approach and make decisions on advance care planning. A greater understanding of such patterns could help inform the way healthcare professionals engage in conversations about end-of-life care planning with older LGB people.

Innovation in Aging, 2019

The socio-cultural and legal position of LGBT citizens varies across nations. However, even in th... more The socio-cultural and legal position of LGBT citizens varies across nations. However, even in the most liberal countries, an historical legacy of stigma impacts on older LGBT people’s access to care. This paper draws upon the qualitative strand of a two-year UK project exploring the end of life experiences and care needs of older LGBT people. (N = 60 in-depth interviews with LGBT participants aged 60+). Findings highlight that the majority of respondents reported ways in which they manage their personal networks to minimize any vulnerability to discrimination. In planning or needing end-of-life-care, respondents identify new ‘layers’ of decisions about disclosing or hiding their sexual or gender orientation; informed by past experiences and fears about discrimination or exclusion from service providers. In conclusion, older LGBT people’s histories and a legacy of stigma have ongoing profound influences on the means of support available to them at the end of life.

Intersections of Ageing, Gender and Sexualities, 2019

With an increasingly diverse ageing population, we need to expand our understanding of how social... more With an increasingly diverse ageing population, we need to expand our understanding of how social divisions intersect to affect outcomes in later life. This edited collection examines ageing, gender and sexualities from multidisciplinary and geographically diverse perspectives and looks at how these factors combine with other social divisions to affect experiences of ageing. It draws on theory and empirical data to provide both conceptual knowledge and clear ‘real-world’ illustrations, and includes section introductions to guide the reader through the debates and ideas.

The International Journal of Aging and Human Development, 2019

In this article, we provide critical observations of empirical research from leading U.K. researc... more In this article, we provide critical observations of empirical research from leading U.K. researchers relating to the lives of lesbian, gay, bisexual, and trans older adults. We suggest learning that may be applied in differing global contexts as well as contributing to the development of an international evidence base. We illustrate the importance of paying attention to distinct health and care systems and legislation, which present global differences as well as similarities in terms of lesbian, gay, bisexual, and trans people’s perceptions and access to resources. With this contextual background, we then discuss the cutting-edge U.K. research in this field from 2010 onward. We identify key strengths including the contribution our evidence has made to policy and practice and the development of theoretical insights such as the impact of intersectionality. The article concludes with a discussion of future research in this field which has relevance at national and international levels.

Philosophy, Psychiatry, & Psychology, 2017

Abstract Successful critiques of health policies for people with impa... more Abstract Successful critiques of health policies for people with impaired cognition identify a need for alternatives that go beyond individualism. 'Choice' policy was examined as young people with severe intellectual disabilities moved from special schools to adult services. We draw on three cases from a longitudinal cohort study to examine the way decisions with and for these young people were made and accounted for. It was not a simple matter of parents and transition workers hearing about these young people's choices and facilitating what they wanted. The data raise questions about discourses of choice in ID when referring to people with severe intellectual disabilities: Few 'choices' could be considered informed nor made by young people with capacity to make them and many decisions were informed by other ethics. Findings were interpreted through a Deleuzean ethical-relational lens. We identify implications for theory and practice to show how Deleuzean thinking can reinvigorate intellectual disability. Keywords Choice, ethics, transition, accounts The promotion of rights, autonomy and choice reacts against paternalism, an early twentieth-century response to intellectual disability (ID; formerly learning disability in the UK and mental retardation in the United States) that suppressed individual personhood through a combination of resource limitations and poor administration (Thomson, 1998).

International journal of environmental research and public health, Apr 7, 2018

Background Older lesbian, gay, bisexual and trans (LGBT) residents are often invisible in long-te... more Background Older lesbian, gay, bisexual and trans (LGBT) residents are often invisible in long-term care settings. This article presents findings from a community-based action research project, which attempted to address this invisibility through co-produced research with LGBT community members. Particular Question: What conditions enable co-produced research to emerge in long-term residential care settings for older people? Aims of Project: To analyse outcomes and challenges of action-oriented, co-produced research in the given context. In particular, we explore how co-production as a collaborative approach to action-orientated research can emerge during the research/fieldwork process; and reflect critically on the ethics and effectiveness of this approach in advancing inclusion in context. The project was implemented across six residential care homes in England. Reflections are based on qualitative evaluation data gathered pre- and post-project, which includes 37 interviews with c...

Journal of gerontological social work, 2018

There is a growing social work literature about lesbian, gay, bisexual, and transgender (LGBT) ol... more There is a growing social work literature about lesbian, gay, bisexual, and transgender (LGBT) older people. However, research and guidance are predominantly based on the experiences of older gay men and, to a lesser extent, older lesbians. There is little to help practitioners work with older bisexual people. The Looking Both Ways study aimed to contribute to this gap in knowledge. We undertook in-depth purposely sampled qualitative interviews with 12 people aged over 50, all of whom have bisexual relationship histories and half of whom also currently identify as bisexual. There were three main findings. First, biphobia (prejudice against bisexual people) impacts on older people with bisexual histories in ways that may affect their well-being in later life. Second, concerns around receiving care are similar in some ways and different in others from the concerns of lesbians and gay men. Third, people with bisexual relationship histories may have developed strong support networks and...

Health & social care in the community, Jan 27, 2017

There have been substantial achievements in legislative and human rights for lesbian, gay, bisexu... more There have been substantial achievements in legislative and human rights for lesbian, gay, bisexual and transgender (LGBT) older people and their visibility in health and social care has equally increased. These appear to have surpassed the ability of care services to meet their needs given documented concerns about the accessibility, inclusiveness and safety of care services particularly institutionalised care. This requires systemic change not easy to operationalise. This paper describes an action research initiative where six care homes belonging to a national care provider, collaborated to assess and develop their services with the support of local LGBT "Community Advisors" and academic partners. Framed within Rogers' (2003) change management framework and combined with a participatory leadership approach, a programme of intervention was implemented comprising structured activities around seven key areas thought to promote LGBT inclusion. A formal evaluation was co...