Living and dying: responsibility for end‐of‐life care in care homes without on‐site nursing provision ‐ a prospective study

The aim of the study was to describe the expectations and experiences of end‐of‐life care of older people resident in care homes, and how care home staff and the healthcare practitioners who visited the care home interpreted their role. A mixed‐method design was used. The everyday experience of 121 residents from six care homes in the East of England were tracked; 63 residents, 30 care home staff with assorted roles and 19 National Health Service staff from different disciplines were interviewed. The review of care home notes demonstrated that residents had a wide range of healthcare problems. Length of time in the care homes, functional ability or episodes of ill‐health were not necessarily meaningful indicators to staff that a resident was about to die. General Practitioner and district nursing services provided a frequent but episodic service to individual residents. There were two recurring themes that affected how staff engaged with the process of advance care planning with residents; ‘talking about dying’ and ‘integrating living and dying’. All participants stated that they were committed to providing end‐of‐life care and supporting residents to die in the care home, if wanted. However, the process was complicated by an ongoing lack of clarity about roles and responsibilities in providing end‐of‐life care, doubts from care home and primary healthcare staff about their capacity to work together when residents’ trajectories to death were unclear. The findings suggest that to support this population, there is a need for a pattern of working between health and care staff that can encourage review and discussion between multiple participants over sustained periods of time.     

End-of-life care for gay,lesbian, bisexual and transgender people

There is little understanding in Australia of the special issues faced by gay, lesbian, bisexual and transgender people in end-of-life care and advance care planning. This exploratory study aimed to achieve an initial understanding of these issues to inform the development of a larger study involving gay, lesbian, bisexual and transgender service users. Consultations were carried out with 19 service providers and 6 gay, lesbian, bisexual and transgender community members in the Northern Rivers and metropolitan Sydney areas of New South Wales, Australia. Participants reported barriers to health care service access due to discrimination, inappropriate care and lack of knowledge among both consumers and health care workers of legal rights at the end of life. While advance care planning can assist with improving end-of-life care, respondents reported a number of obstacles. These included a lack of knowledge and absence of perceived need and the additional obstacle of social isolation, leading to difficulties identifying alternative decision-makers. The study highlighted the need for education for gay, lesbian, bisexual and transgender people and health and aged care providers on existing legal provisions to prevent discrimination in end-of-life care.     

A community‐of‐care: the integration of a palliative approach within residential aged care facilities in Australia

In developed countries, residential aged care facilities (RACFs) are increasingly becoming the place of care and site of death for older people with complex chronic illnesses. Consequently, it is becoming ever more relevant for these facilities to provide appropriate complex, as well as end‐of‐life care for this growing group of people. Evidence‐based guidelines for providing a ‘palliative approach’ were developed and introduced in Australia in 2004, with the emphasis on improving symptom control earlier in the disease trajectory. The aim of the study reported here was to explore the extent to which a palliative approach was being used in the organisation and provision of care for older people with complex needs living in mixed‐level (a combination of low‐ and high‐level care) RACFs. This paper primarily reports on the qualitative findings. Two residential aged care organisations, one in rural New South Wales and the other in Sydney, Australia, participated. Data were collected over a 9‐month period from May until December 2008. Residents, family members and aged care staff were interviewed. Thematic analysis of participant interviews shows that while the various elements of a palliative approach are incorporated into the care of high‐level care residents, the discourse itself is not used. In this paper, we argue for a new conceptualisation of care for people in mixed‐level care facilities: a community‐of‐care, in which a palliative approach is one of several components of the care provided. The findings illuminate aged care staff experiences of providing care to high‐level care residents. They also provide valuable insights into high‐level care residents’ perceptions of their health, care provided and the way in which they foresee their care being provided in future. These findings will be important for informing clinical practice, research and policy in these settings.     

End-of-life care for gay, lesbian, bisexual and transgender people

There is little understanding in Australia of the special issues faced by gay, lesbian, bisexual and transgender people in end-of-life care and advance care planning. This exploratory study aimed to achieve an initial understanding of these issues to inform the development of a larger study involving gay, lesbian, bisexual and transgender service users. Consultations were carried out with 19 service providers and 6 gay, lesbian, bisexual and transgender community members in the Northern Rivers and metropolitan Sydney areas of New South Wales, Australia. Participants reported barriers to health care service access due to discrimination, inappropriate care and lack of knowledge among both consumers and health care workers of legal rights at the end of life. While advance care planning can assist with improving end-of-life care, respondents reported a number of obstacles. These included a lack of knowledge and absence of perceived need and the additional obstacle of social isolation, leading to difficulties identifying alternative decision-makers. The study highlighted the need for education for gay, lesbian, bisexual and transgender people and health and aged care providers on existing legal provisions to prevent discrimination in end-of-life care.     

Patient‐centred care training needs of health care assistants who provide care for people with dementia

It is well documented that Health care assistants (HCAs) provide the most hands‐on care to residents in aged care facilities, and play a critical role in the provision of care to dementia residents. Over the last 25 years, a philosophy of person‐centred care has become the preferred approach to care and this has meant that HCAs are encouraged to get to know the resident very well. This paper reports the experiences of HCAs in caring for people at end‐of‐life, identifies the skills required for their work and examines the education provided against these skills. Semi‐structured interviews were conducted in 49 facilities (n = 34) across New Zealand and data analysed thematically, with the aim of critically examining the adequacy of education for health care assistants which meets their needs within a person‐centred environment. The results confirm that the skills include traditional tasks of care (showering, feeding, toileting, and dressing) but the increasingly important communication and de‐escalation skills, both verbal and non‐verbal, have become central to their care skills. Education provided has not sufficiently shifted focus to include these more complex skills. Provision of educations that acknowledges the increased complexities of their role needs to be provided. As well, facilities need to be challenged to reconsider the HCA's position in the facility care tem.     

A cyborg ontology in health care: traversing into the liminal space between technology and person‐centred practice

Person‐centred practice indubitably seems to be the antithesis of technology. The ostensible polarity of technology and person‐centred practice is an easy road to travel down and in their various forms has been probably travelled for decades if not centuries. By forging ahead or enduring these dualisms, we continue to approach and recede, but never encounter the elusive and the liminal space between technology and person‐centred practice. Inspired by Haraway's work, we argue that healthcare practitioners who critically consider their cyborg ontology may begin the process to initiate and complicate the liminal and sought after space between technology and person‐centred practice. In this paper, we draw upon Haraway's idea that we are all materially and ontologically cyborgs. Cyborgs, the hybridity of machine and human, are part of our social reality and embedded in our everyday existence. By considering our cyborg ontology, we suggest that person‐centred practice can be actualized in the contextualized, embodied and relational spaces of technology. It is not a question of espousing technology or person‐centred practice. Such dualisms have been historically produced and reproduced over many decades and prevented us from recognizing our own cyborg ontology. Rather, it is salient that we take notice of our own cyborg ontology and how technological, habitual ways of being may prevent (and facilitate) us to recognize the embodied and contextualized experiences of patients. A disruption and engagement with the habitual can ensure we are not governed by technology in our logics and practices of care and can move us to a conscious and critical integration of person‐centred practice in the technologized care environments. By acknowledging ourselves as cyborgs, we can recapture and preserve our humanness as caregivers, as well as thrive as we proceed in our technological way of being.     

Moving from place to place in the last year of life: A qualitative study identifying care setting transition issues and solutions in Ontario

Moving from one care setting to another is common as death nears. Many concerns exist over these end‐of‐life (EOL) care setting transitions, including low‐quality moves as mistakes and other mishaps can occur. Delayed or denied moves are also problematic, such as a move out of hospital for dying inpatients who want to spend their last hours or days at home. The aim of the study was to identify current issues or problems with care setting transitions during the last year of life as well as potential or actual solutions for these problems. A grounded theory analysis approach was used based on interviews with 38 key informants who represent a wide range of healthcare providers, healthcare managers, government representatives, lawyers, healthcare recipients and their family/friends across Ontario in 2016. Three interrelated themes were revealed: (a) communication complexities, (b) care planning and coordination gaps and (c) health system reform needs. Six solutions were highlighted, with these designed to prevent care setting transition issues and monitor care setting transitions for continued improvements.     

Self‐directed community services for older Australians: a stepped capacity‐building approach

Consumer‐directed care (CDC) is increasingly widespread among aged care service options in Organisation for Economic Co‐operation and Development (OECD) countries. However, the evidence base regarding the programmatic and contextual factors that affect the outcome of CDC interventions is surprisingly small. This paper reports on a self‐directed care approach for older Australians with complex care needs. A multi‐methods longitudinal comparative cohort study was employed comprising 4 survey tools and 56 semi‐structured interviews. Participation rates were around 20%. A total of 185 (98 in the intervention and 87 in the control group) older people and carers were recruited at baseline. Eleven months later, 109 participants (59 in the intervention and 50 in the control group) completed the repeat measure. Attrition rates were around 40%. Data collection occurred between July 2010 and April 2012. The data suggest that intervention group participants were likely to be more satisfied with the way they were treated (P = 0.013), their care options (P = 0.014), the ‘say’ they had in their care (P < 0.001), the information they received regarding their care (P = 0.012), what they were achieving in life (P = 0.031), that the services changed their view on what could be achieved in life (P = 0.020) and with their standard of living (P = 0.008). The evaluation suggests that while only a very small segment of older people is interested in a voucher or cash option, a substantially larger group would like to have greater say over and more direct access to their care, without, however, assuming administrative and financial responsibilities. The paper concludes that a stepped capacity‐building approach to CDC may improve the acceptability of CDC to older people and generate synergies that improve older people's care outcomes.     

Developing inclusive residential care for older lesbian,gay, bisexual and trans (LGBT) people: An evaluation of the Care Home Challenge action research project

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 conducted involving 35 pre‐ and post‐intervention qualitative interviews with 18 people (community advisors; care home managers and senior managers). The findings are presented across three key themes (1) starting points on the journey; (2) challenges encountered along the journey (organisational and interpersonal); and (3) making change happen; opportunities, initiatives and gains. We make recommendations on the value of a programme approach for achieving tangible outcomes that demonstrate increased inclusion for older LGBT people living in long‐term care settings.     

Care co‐ordination for older people in the third sector: scoping the evidence

The third sector has played a significant role internationally in the delivery of adult social care services for many years. Its contribution to care co‐ordination activities for older people, however, in England and elsewhere, is relatively unknown. A scoping review was therefore conducted to ascertain the character of the literature, the nature and extent of third sector care co‐ordination activity, and to identify evidence gaps. It was undertaken between autumn 2013 and summer 2014 and updated with additional searches in 2016. Electronic and manual searches of international literature using distinct terms for different approaches to care co‐ordination were undertaken. From a total of 835 papers, 26 met inclusion criteria. Data were organised in relation to care co‐ordination approaches, types of third sector organisation and care recipients. Papers were predominantly from the UK and published this century. Key findings included that: a minority of literature focused specifically on older people and that those doing so described only one care co‐ordination approach; third sector services tended to be associated with independence and person‐centred practice; and working with the statutory sector, a prerequisite of care co‐ordination, was challenging and required a range of features to be in place to support effective partnerships. Strengths and weaknesses of care co‐ordination practice in the third sector according to key stakeholder groups were also highlighted. Areas for future research included the need for: a specific focus on older people's experiences; an investigation of workforce issues; detailed examination of third sector practices, outcomes and costs; interactions with the statutory sector; and an examination of quality assurance systems and their appropriateness to third sector practice. The main implication of the findings is a need to nurture variety within the third sector in order to provide older people and other adults with the range of service options desired.     

Perspectives of self‐direction: a systematic review of key areas contributing to service users’ engagement and choice‐making in self‐directed disability services and supports

Self‐directed disability support policies aim to encourage greater choice and control for service users in terms of the health and social care they receive. The proliferation of self‐directed disability support policies throughout the developed world has resulted in a growing amount of research exploring the outcomes for service users, and their families and carers. Our understanding of the issues faced by people with disabilities, particularly how they make health and social care decisions and the key areas that determine their engagement with service providers within a self‐directed environment is limited. A synthesis of research is timely and can provide knowledge for service users and health and social care support providers to ensure their successful participation. A systematic review guided by the PRISMA approach explored (i) the key areas determining service users’ engagement with self‐directed disability services and supports, and (ii) how service users make informed decisions about providers. In October 2014 and April 2016, three databases – MEDLINE, CINAHL and Web of Science – were searched for research and review articles. Eighteen sources met the search criteria. Findings were mapped into either: key areas determining service user engagement, or service users’ informed decision‐making. Findings concerning key areas determining engagement fell into three themes – personal responsibility for budgeting, personalised approaches, and a cultural shift in practice and delivery among service providers. Findings about decision‐making yielded two themes – supporting informed decision‐making and inhibiting informed decision‐making. Literature suggests that self‐directed models of care may provide service users with increased control over the services that they receive. Increased control for some service users and their families requires independent external decision‐making support, particularly around the domains of budgeting, planning and hiring. Future research must continue to investigate the perspectives of service users pertaining to their engagement, as their participation is central to the effectiveness of the approach.     

‘That would have been beneficial’: LGBTQ education for home‐care service providers

This paper reports qualitative findings from a pilot study that explored the lesbian, gay, bisexual, transgender and queer (LGBTQ) education needs of home‐care service providers working in one large, urban Canadian city. The pilot study builds upon research that has documented barriers to health services for diversely situated LGBTQ people, which function to limit access to good‐quality healthcare. LGBTQ activists, organisations and allies have underscored the need for health provider education related to the unique health and service experiences of sexual and gender minority communities. However, the home‐care sector is generally overlooked in this important body of research literature. We used purposeful convenience sampling to conduct four focus groups and two individual interviews with a total of 15 professionally diverse home‐care service providers. Data collection was carried out from January 2011 to July 2012 and data were analysed using grounded theory methods towards the identification of the overarching theme, ‘provider education’ and it had two sub‐themes: (i) experiences of LGBTQ education; and (ii) recommendations for LGBTQ education. The study findings raise important questions about limited and uneven access to adequate LGBTQ education for home‐care service providers, suggest important policy implications for the education and health sectors, and point to the need for anti‐oppression principles in the development of education initiatives.     

Lesbian, gay, bisexual and transgender young people's experiences of distress: resilience, ambivalence and self-destructive behaviour

The research presented in this paper set out to explore the cultural context of youth suicide and more specifically any connections between sexual identity and self-destructive behaviour, in the light of international evidence about the disproportionate risk of suicidal thoughts and suicide attempts in lesbian, gay, bisexual and transgender (LGBT) young people. The empirical basis for the paper is qualitative research that was carried out in the North West of England and South Wales. Focus groups and interviews were conducted with a total of 69 young people, with a purposive sample to reflect diversity of sexual identity, social class and regional and rural-urban location. The paper presents a thematic analysis of the data specifically relating to the experiences of LGBT young people. A range of strategies that LGBT young people employ in the face of distress are described. These are categorised as resilience, ambivalence and self-destructive behaviour (including self-harm and suicide). The potential implications for health and social care of these strategies include the need for ecological approaches and for sexual cultural competence in practitioners, as well as prioritisation of LGBT risk within suicide prevention policies.     

The health, social care and housing needs of lesbian, gay, bisexual and transgender older people: a review of the literature

This paper reports the findings of a literature review of the health, social care and housing needs of older lesbian, gay, bisexual and transgender (LGBT) adults undertaken in 2006 for the Welsh Assembly Government. Peer-reviewed literature was identified through database searches of BNI, PubMed, CINAHL, DARE, ASSIA and PsychInfo. Follow-up searches were conducted using references to key papers and journals as well as specific authors who had published key papers. A total of 187 papers or chapters were retrieved, of which 66 were included in the study; major themes were identified and the findings synthesised using a meta-narrative approach. The main themes that emerged from the review were isolation, health behaviours, mental health and sexual health behaviours. The literature indicates that the health, social care and housing needs of LGBT older people is influenced by a number of forms of discrimination which may impact upon the provision of, access to and take up of health, social care and housing services. Understanding of the health, social care and housing needs of older LGBT people is limited and research in this area is scarce. The research which exists has been criticised for using small samples and for tending to exclude participants from less affluent backgrounds. The focus of research tends to be on gay men and lesbians; consequently, the needs of bisexual and transgender people remain largely unknown. Additionally, research which does exist tends to focus on a narrow range of health issues, often related to the health needs of younger LGBT people. Discrimination in various forms has a major impact on needs and experiences, leading to marginalisation of LGBT people both in the provision of health and social care services and neglect of these groups in public health research.     

Scrambling for access: availability,accessibility, acceptability and quality of healthcare for lesbian,gay, bisexual and transgender people in South Africa

Background

Sexual orientation and gender identity are social determinants of health for people identifying as lesbian, gay, bisexual and transgender (LGBT), and health disparities among sexual and gender minority populations are increasingly well understood. Although the South African constitution guarantees sexual and gender minority people the right to non-discrimination and the right to access to healthcare, homo- and transphobia in society abound. Little is known about LGBT people’s healthcare experiences in South Africa, but anecdotal evidence suggests significant barriers to accessing care. Using the framework of the UN International Covenant on Economic, Social and Cultural Rights General Comment 14, this study analyses the experiences of LGBT health service users using South African public sector healthcare, including access to HIV counselling, testing and treatment.

Methods

A qualitative study comprised of 16 semi-structured interviews and two focus group discussions with LGBT health service users, and 14 individual interviews with representatives of LGBT organisations. Data were thematically analysed within the framework of the UN International Covenant on Economic, Social and Cultural Rights General Comment 14, focusing on availability, accessibility, acceptability and quality of care.

Results

All interviewees reported experiences of discrimination by healthcare providers based on their sexual orientation and/or gender identity. Participants recounted violations of all four elements of the UN General Comment 14: 1) Availability: Lack of public health facilities and services, both for general and LGBT-specific concerns; 2) Accessibility: Healthcare providers' refusal to provide care to LGBT patients; 3) Acceptability: Articulation of moral judgment and disapproval of LGBT patients’ identity, and forced subjection of patients to religious practices; 4) Quality: Lack of knowledge about LGBT identities and health needs, leading to poor-quality care. Participants had delayed or avoided seeking healthcare in the past, and none had sought out accountability or complaint mechanisms within the health system.

Conclusion

Sexual orientation and gender identity are important categories of analysis for health equity, and lead to disparities in all four dimensions of healthcare access as defined by General Comment 14. Discriminatory and prejudicial attitudes by healthcare providers, combined with a lack of competency and knowledge are key reasons for these disparities in South Africa.

     

Ideal and reality; Community healthcare professionals’ experiences of user‐involvement in reablement

Many welfare states offer reablement, also known as restorative care, as an intervention to promote healthy ageing and support older adults in regaining or maintaining their independence in daily life. Reablement is a time‐limited, intensive, multidisciplinary, person‐centred and goal‐directed rehabilitative intervention. Reablement emanates from the user’s goals, thus user‐involvement is a key factor. The aim of our study was to explore healthcare professionals’ experiences of user‐involvement in reablement. The context for the study was an urban municipality in south‐eastern Norway where reablement had been implemented into home‐care services 1.5 years prior to the study. Eighteen healthcare professionals recruited from home‐care services participated in focus groups. The material was analysed using qualitative content analysis. The findings resulted in one main theme: Transforming user‐involvement from ideal to reality—a demanding process, and four sub‐themes: (a) An ideal of self‐determination and co‐operation; (b) Diverse ability to commit to what user‐involvement requires; (c) Continuous co‐creation processes; and (d) Challenged by old traditions. User‐involvement is a valued ideal that professionals strive towards when providing healthcare. Two main strategies that professionals use to enable user‐involvement were identified here: spending sufficient time and having patience with users during the initial stage of an intervention, and starting an intervention by introducing small tasks that users can master. It was also seen that if the time and arenas for interdisciplinary meetings were lacking, professionals could demonstrate traditional attitudes and practice when faced with limited user‐involvement in the intervention. There is a need for follow‐up over time at the structural, personal, and cultural levels to develop reablement as an intervention with a strong person‐centred approach. The findings of this study have relevance for practice development in several reablement settings.     

At the intersection of marginalised identities: lesbian,gay, bisexual and transgender people's experiences of injecting drug use and hepatitis C seroconversion

Although the levels of injecting drug use among lesbian, gay, bisexual and transgender (LGBT) populations are high, we know little about their experiences of injecting drugs or living with hepatitis C virus (HCV) infection. The loss of traditional family and cultural ties means connection to community is important to the well‐being of LGBT populations. Although some kinds of drug use are normalised within many LGBT communities, injecting drug use continues to be stigmatised. This exploratory qualitative study of people with newly acquired HCV used semi‐structured interviews to explore participants' understandings and awareness of HCV, seroconversion, testing, diagnosis and treatment. We present a secondary thematic analysis of eight LGBT participants of the experience of injecting drugs, living with HCV and having a marginalised sexual or gender identity. Community was central to the participants' accounts. Drug use facilitated connection to a chosen community by suppressing sexual or gender desires allows them to fit in to the mainstream; enacting LGBT community norms of behaviour; and connection through shared drug use. Participants also described feeling afraid to come out about their drug use to LGBT peers because of the associated stigma of HCV. They described a similar stigma associated with HIV within the people who inject drugs (PWID) community. Thus, the combination of being LGBT/living with HIV (a gay disease) and injecting drugs/living with HCV (a junkie's disease) left them in a kind of no‐man's‐land. Health professionals working in drug and HCV care services need to develop capacity in providing culturally appropriate health‐care for LGBT PWID.     

Health,well‐being,and social support in older Australian lesbian and gay care‐givers

Informal care‐givers play an important role in society, and many of the people who provide this care are lesbian women and gay men. Being a care‐giver is known to be associated with poorer health and well‐being, and lesbian and gay care‐givers report experiences of stigma and discrimination in the care‐giving context. This study involved a survey of 230 lesbian women and 503 gay men aged 60 years and over living in Australia, of which 218 were care‐givers. We compared care‐givers to non‐caregivers on a range of health and well‐being measures, including psychological distress, positive mental health, physical health and social support. While we found no significant differences between these two groups, we further compared care‐givers who were caring for an LGBTI person to those who were caring for a non‐LGBTI person. Among the lesbian women, care‐givers of an LGBTI person reported feeling less supported in their carer role and reported lower levels of social support more generally. They were also lower on positive mental health and physical health indicators. Among the gay men, care‐givers of an LGBTI person also reported feeling less supported in their carer role, but there were no differences in reported levels of social support more generally or health and well‐being compared to those caring for a non‐LGBTI person. Overall, results from this study suggest that older lesbian and gay care‐givers may be facing some challenges related to their well‐being and feeling supported, especially if they are caring for another LGBTI person.     

Researching nursing practice: does person‐centredness matter?1

Person‐centredness is common speak in nursing and health care literature. Increasingly there is an expectation that practitioners adopt person‐centred principles in their practice and organizations are expected to respect the values of the service user. However, in the research methodology literature, there is little explicit attention paid to the concept of person‐centredness in research practice. Instead, there continues to be a reliance on traditional ‘ethical principles’ to guide effectiveness in research work. This paper argues that the principles of person‐centredness that are espoused in nursing practice should also underpin nursing and health care research. A framework for person‐centred research is proposed and issues concerning its implementation in practice are discussed.