'Because it's the wife who has to look after the man': A descriptive qualitative study of older women and the intersection of gender and the provision of family caregiving at the end of life.

BACKGROUND: Research indicates that women are the primary family caregivers for others at life's end and, because of ageing populations, will keep fulfilling this role as they age. Yet, little is known about how the gendered nature of caregiving contributes to older women's understandings of providing care. AIM: To explore how gender norms constructed older women's views about the appropriate roles of women and men in providing palliative and end-of-life care for family members. DESIGN: Six focus groups were conducted with 39 community dwelling older adults (36 women and 3 men) using two vignettes to prompt discussion about experience of end of life caring and attitudes towards Advance Care Planning. This article reports on data gathered from female participants' reactions to Vignette 1 which prompted significant discussion regarding the intersection of gender and older women's caregiving experience. SETTING/PARTICIPANTS: A total of 36 women in the age ranges of '50-59 years' through to '90-99 years' from New Zealand. RESULTS: Three themes regarding gender and caregiving were identified: the expectation women will care, women's duty to care and women's construction of men in relation to caregiving and illness. The women adhered to stereotypical gender norms that regard women as primary caregivers. There was little connection between the burden they associated with caregiving and this gender construction. CONCLUSION: The expectation that older women will provide end-of-life care even when experiencing considerable burden is an unacknowledged outcome of gender norms that construct women as caregivers.

"Sometimes I've gone home feeling that my voice hasn't been heard": a focus group study exploring the views and experiences of health care assistants when caring for dying residents.

BACKGROUND: In most developed countries, Health Care Assistants comprise a significant, and growing, proportion of the residential aged care workforce. Despite the fact that they provide the majority of direct care for residents, little is known about a key care aspect of their work, namely their experience of caring for dying residents. METHODS: Twenty-six Health Care Assistants working in aged residential care facilities in Auckland, New Zealand participated in six focus group discussions. Focus groups were designed to explore the experiences of Health Care Assistants caring for imminently dying residents in aged care facilities and to identify barriers and facilitators to their work in this area. The focus groups were digitally recorded, transcribed verbatim and analysed using a general inductive approach. RESULTS: Participants confirmed that Health Care Assistants provide the majority of hands on care to dying residents and believed they had a valuable role to play at this time due to their unique 'familial' relationship with residents and families. However, it was apparent that a number of barriers existed to them maximising their contribution to supporting dying residents, most notably the lack of value placed on their knowledge and experience by other members of the multidisciplinary team. Whilst a need for additional palliative and end of life care education was identified, a preference was identified for hands on education delivered by peers, rather than the didactic education they currently receive. CONCLUSION: Given ageing populations internationally coupled with a constrained health budget, the role of Health Care Assistants in most developed countries is likely to become even more significant in the short to medium term. This study makes a unique contribution to the international literature by identifying the barriers to caring for dying residents experienced by this valuable sector of the aged care workforce. These data have the potential to inform new, innovative, interventions to address the urgent need identified to improve palliative and end of life care management in aged care internationally.

Women's understandings of sexual problems: findings from an in-depth interview study.

AIMS AND OBJECTIVES: To explore women's understandings of sexual problems. BACKGROUND: Prevailing knowledge about women's sexual problems has prioritised the material body. Particular attention is given to the importance of penetrative sexual intercourse, orgasm and the reproductive imperative, which fail to take account of contextual factors that contribute to women's experiences of sexual problems. DESIGN: Qualitative in-depth interview study. METHODS: Individual in-depth interviews conducted with 23 women aged 23-72 years, recruited from members of the general public and a psychosexual clinic. RESULTS: The findings suggest that sexual problems are bodily experienced and socially and psychologically mediated. Women's views were influenced by the relational context of their experiences. At the same time, their views were deeply embedded within a patriarchal framework to make sense of their own sexual functioning and satisfaction. CONCLUSION: This study presents a challenge in the drive to medicalise women's sexual problems via the female sexual dysfunction label. It problematises the current diagnostic criteria for sexual problems outlined in the Diagnostic and Statistical Manual, which presupposes a highly individualised framework and favours a more nuanced approach. RELEVANCE TO CLINICAL PRACTICE: Rather than adopting or eschewing an entirely medical or psychosocial model, women presenting with sexual problems should be seen by a clinician whose assessment is holistic and takes into account relational, cultural, psychosocial and health-related concerns.

Barriers and facilitators to the receipt of palliative care for people with dementia: the views of medical and nursing staff.

BACKGROUND: The global prevalence of dementia is set to rise to almost 65 million people by 2030, providing policy makers and practitioners with significant challenges, not least within the realms of end-of-life care. The international literature would suggest that people with dementia may benefit from palliative forms of care, but evidence indicates that many fail to access such provision at the end of life. The role of the health care team is pivotal if people with dementia are to benefit from the transition to palliative care. AIM: This paper reports on qualitative research conducted in the UK that sought to explore the experiences of health care practitioners working in palliative care and sought to establish the issues relating to end-of-life care for people with dementia. DESIGN: Eight focus groups and four individual interviews were held. Data were analysed using a thematic approach. SETTING/PARTICIPANTS: The study included palliative care practitioners (n = 58) including medical, nursing and allied health professionals. Participants were recruited from acute hospitals, general practice, hospices and specialist palliative care units in the UK. RESULTS: Four themes were identified: Making the transition; Competence challenged; 'The long view' and Working together. Whilst there exists good practice in this area, the barriers to timely and appropriate transitions to palliative care for people with dementia and their families continue to exist. The paper concludes with recommendations for policy and practice development.

'That's part of everybody's job': the perspectives of health care staff in England and New Zealand on the meaning and remit of palliative care.

BACKGROUND: the right for patients of all diagnoses to be in receipt of palliative care from an early point in the diagnosis of a life-limiting condition is now enshrined in policy in a number of countries and increased emphasis is placed upon the role of generalist palliative care. However, little is known as to how this policy is enacted on the ground. AIM: to explore understandings of, and perceived roles in relation to, palliative care provision amongst generalist and specialist health care providers in England and New Zealand. DESIGN: qualitative data were collected via individual interviews and focus groups. SETTING/PARTICIPANTS: participants comprised generalist and specialist palliative care providers working in a variety of settings in England (n = 58) and New Zealand (n = 80). RESULTS: the following issues with significant implications for this new phase of development for palliative care were identified: (1) difficulties with terminology and perceived roles/responsibilities; (2) problems of integrating palliative care into a generalist workload; (3) challenges in generalist/specialist partnership working; and (4) the potential negative consequences of specialization. CONCLUSIONS: these data indicate that, within England and New Zealand, the policy rhetoric of universal palliative care provision is not being straightforwardly translated into service delivery and individual clinical practice. Further research is required to explore and evaluate different models of organization and service provision that empower 'generalists' to provide palliative care, without resulting in deskilling. Finally, definitional clarity at an academic/policy level is also needed.

Evidence-based clinical practice guidelines on the management of pain in older people - a summary report.

OBJECTIVE: The objective of this study is to develop an update of the evidence-based guidelines for the management of pain in older people. DESIGN: Review of evidence since 2010 using a systematic and consensus approach is performed. RESULTS: Recognition of the type of pain and routine assessment of pain should inform the use of specific environmental, behavioural and pharmacological interventions. Individualised care plans and analgesic protocols for specific clinical situations, patients and health care settings can be developed from these guidelines. CONCLUSION: Management of pain must be considered as an important component of the health care provided to all people, regardless of their chronological age or severity of illness. By clearly outlining areas where evidence is not available, these guidelines may also stimulate further research. To use the recommended therapeutic approaches, clinicians must be familiar with adverse effects of treatment and the potential for drug interactions.

Controversies and contentions: a gay man conducting research with women about their understandings of sexuality, sex and sexual problems.

Whether male researchers can conduct qualitative research with female participants, and interpret accounts of their lives, is a contentious issue within the feminist literature. Academics and activists argue that not all researchers are uniformly positioned, in terms of social location, or possess the necessary lived experiences to conduct feminist research. Conducting research into sexuality can intensify these concerns, with such projects perceived as 'riskier' and establishing trust in the research setting more difficult than with mainstream topics. This paper draws on data from research interviews that explored women's understandings of sexuality, sex and sexual problems to discuss participants' views of being interviewed by a gay man. It highlights that the shared experience of marginality was a key influence upon the interview interaction, particularly regarding levels of empathy, and this facilitated disclosure. By providing a reflexive account of the gendered and sexual orientation dynamics of conducting research interviews, we argue that focusing solely upon gender similarity as a pre-requisite for conducting feminist research with female participants fails to acknowledge the role of other factors that enable 'good' research to be done.

A study to define: profound and multiple learning disabilities (PMLD).

This study aimed to define the term 'profound and multiple learning disabilities' (PMLD). A shared understanding of terminology or diagnostic terms describing groups of individuals is important for the purposes of strategic development, service planning, and the provision and equity of service delivery. A literature review provided different definitions and meanings associated with the term. The meaning attributed to the definitions was explored in focus groups and individual interviews (face to face and telephone) with service managers, commissioners, practitioners, frontline healthcare staff and family carers who provide services, support and care for people with PMLD. Further iterative discussions were held with a smaller group over the precise wording of the chosen definition to ensure there was a shared and common understanding. Personal characteristics for the purpose of this study are defined as diagnoses, disabilities, impairments, activity restrictions and other characteristics which represent a person with PMLD.

Acceptability of Paper-Based Advance Care Planning (ACP) to Inform End-of-Life Care Provision for Community Dwelling Older Adults: A Qualitative Interview Study.

This paper reports the findings from a study to investigate health care professionals' views regarding the use and acceptability of two similar paper-based advance care planning (ACP) documents designed for older adults in their last year of life to inform end-of-life care provision. Participants' views of using PEACE (Proactive Elderly Persons Advisory Care), a nurse led model with community geriatrician oversight, and PACe (proactive anticipatory care plan), a general practitioner (GP) led model implemented by two clinical commissioning groups (CCGs) as part of a wider pilot to determine their ability to improve end-of-life care provision, were explored. Hospital admission avoidance matrons took part in face to face interviews and care staff employed in private residential care homes took part in individual telephone interviews to explore their views of using the PEACE tool. Telephone interviews were conducted with GPs to explore their views of PACe. GPs and admission avoidance matrons were employed by CCGs and all study participants were recruited from the South East of England, where data collection took place in 2015. The data were analysed thematically. Findings from the study demonstrate how both tools provide a focus to ACP discussions to inform individual end-of-life care preferences. The importance of relationships was a pivotal theme established, trusting inter-professional relationships to enable multidisciplinary teamwork and a prior relationship with the older person (or their proxy in the case of cognitive impairment) to enable such conversations in the first place. Both tools enabled participants to think critically and reflect on their own practice. Notwithstanding participants' views to improve their layout, using a paper-based approach to deliver streamlined ACP and end-of-life care was a theme to emerge as a potential barrier, and highlighted problems with accessing paper-based documentation, accuracy and care co-ordination in the context of multidisciplinary team working. The value of technology in overcoming this barrier and underpinning ACP as a means to help simplify service provision, promote integrated professional practice and provide seamless care, was put forward as a way forward.

General practice and specialist palliative care teams: an exploration of their working relationship from the perspective of clinical staff working in New Zealand.

With the future focus on palliative and end-of-life care provision in the community, the role of the general practice team and their relationship with specialist palliative care providers is key to responding effectively to the projected increase in palliative care need. Studies have highlighted the potential to improve co-ordination and minimise fragmentation of care for people living with palliative care need through a partnership between generalist services and specialist palliative care. However, to date, the exact nature of this partnership approach has not been well defined and debate exists about how to make such partnerships work successfully. The aim of this study was to explore how general practice and specialist palliative care team (SPCT) members view their relationship in terms of partnership working. Five focus group discussions with general practices and SPCT members (n = 35) were conducted in 2012 in two different regions of New Zealand and analysed using a general inductive approach. The findings indicate that participants' understanding of partnership working was informed by their identity as a generalist or specialist, their existing rules of engagement and the approach they took towards sustaining the partnership. Considerable commitment to partnership working was shown by all participating teams. However, their working relationship was based primarily on trust and personal liaison, with limited formal systems in place to enable partnership working. Tensions between the cultures of 'generalism' and 'specialism' also provided challenges for those endeavouring to meet palliative care need collaboratively in the community. Further research is required to better understand the factors associated with successful partnership working between general practices and specialist palliative care in order to develop robust strategies to support a more sustainable model of community palliative care.

OA1†There's plenty of talk about advance care planning but should women be listening?

BACKGROUND: It is well established that populations worldwide are ageing. It is also well known that women will continue to live longer than men. Indeed, the social gerontology literature describes 'deep old age' as being predominantly female. However, little research exists about the gendered implications of palliative care. AIM: To provide a feminist critique of attitudes towards and perceptions about Advance Care Planning (ACP) amongst community dwelling adults. METHODS: Forty-seven women and men (55-93) resident in Auckland, New Zealand and members of community organisations participated in seven focus groups. Vignettes about individuals with chronic illnesses were used to encourage discussion about participants' views on Advance Care Planning (ACP). A feminist gerontology framework informed the thematic analysis. RESULTS: Study participants stated there is an expectation women will provide end of life care for their partners, thus facilitating the partner's option to remain at home. Some women voiced concern about how a lack of financial resources, family and social networks affected their current wellbeing and shaped their fears for the future. Other attitudes expressed highlighted awareness of the physical, emotional and financial burden women experience as a result of providing end of life care. CONCLUSION: This study, one of the first to adopt and explicitly feminist approach to ACP, suggests attitudes towards ACP are highly gendered, while women are often caregivers for others at the end of life, their own choices are more likely to be circumscribed by living alone at the end of life or being resident in aged residential care.

Perceptions towards lesbian, gay and bisexual people in residential care facilities: a qualitative study.

BACKGROUND: Internationally, increases in the numbers of older people will be reflected in larger numbers of more socioculturally diverse groups of older people requiring care provided by residential care facilities. Covert and overt instances of homophobia are evident within residential care services provided to older lesbian, gay and bisexual people. AIMS: To explore the perceptions of care staff working in residential care homes towards older lesbian, gay and bisexual people. DESIGN: Critical gerontology formed the methodological foundations for focus group discussions with care staff from seven residential care facilities. Hypothetical vignettes were used to stimulate discussion amongst participants. RESULTS: Thematic analysis of the seven focus group interviews illuminated three themes: 'Knowing me knowing you', 'Out of sight out of mind' and 'It's a generational thing'. Subtle as well as not so subtle forms of homophobia were evident in each of the themes. Care staff felt they were largely unprepared to provide care to older lesbian, gay and bisexual people. CONCLUSION: This small-scale New Zealand study identifies that the residential care sector is not always supportive, or prepared, to provide a care service to those people identifying as lesbian, gay and bisexual. IMPLICATIONS FOR PRACTICE: Findings from this study recommend the implementation of principle-based guidelines, opportunities to participate in ongoing education and partnering with non-heterosexual community organisations in order to provide culturally appropriate care to older lesbian, gay and bisexual people.

Planning for the end of life: the views of older people about advance care statements.

Advance statements about medical care have been heralded by some as a solution to the problem of end of life decision making for people not able to participate in discussions about their care. Since death is now most likely to occur at the end of a long life, it is important to understand the views and values which older people express in relation to these. This paper reports on a study which used focus groups to explore older people's views about advance statements and the role these might play in end of life care decisions. Participants were 32 older people or their representatives who belonged to six diverse community groups in Sheffield, UK. Advance statements were understood primarily in terms of their potential to aid personal integrity and to help the families of older people by reducing the perceived 'burden' of their decision making. However, concerns were expressed about the perceived link between advance care statements and euthanasia, their future applicability, and the possibility that preferences for care may change. Participants also reported worries and difficulties related to thinking about and discussing death and dying. Trust between doctor and patient, built up over time, was perceived to be important in creating an environment in which the communication necessary to underpin advance care planning could take place. Lastly, participants did not perceive that during dying they would be ready necessarily to adhere to an advance statement and 'disengage' from their lives. We conclude that, rather than emphasising the completion of advance statements, it may be preferable to conceptualise advance care planning as a process of discussion and review between clinicians, patients and families.

Advance care planning for Maori, Pacific and Asian people: the views of New Zealand healthcare professionals.

Despite the benefits of advance care planning (ACP), international research has suggested that in pluralistic and multicultural societies such as New Zealand, significant differences exist in the uptake of ACP between European-based populations and other cultural groups [Crawley (2005)]. The purpose of this study was to therefore explore the views of generalist palliative care providers in both the community and hospital settings regarding the barriers to ACP adoption as well as methods to increase knowledge about ACP among Maori, Pacific and Asian cultural groups within New Zealand society. Eleven individual interviews, two joint interviews and three focus groups were conducted with health and social care professionals with a wide range of knowledge and experience in palliative care. Challenges were related to a number of issues based on culture, including family decision-making style, a need to 'do everything' and a reluctance to discuss issues surrounding dying and death. Suggestions to increase the knowledge of ACP included techniques to improve information access and the utilisation of shared norms and values to assist with discussions between Maori, Pacific and Asian health professionals and their patients and families/whanau. Findings indicate a need for more family/whanau-centred models of ACP, addressed much earlier in the healthcare process and within the community setting.

'But I do believe you've got to accept that that's what life's about': older adults living in New Zealand talk about their experiences of loss and bereavement support.

This paper explores older people's views, experiences and sources of bereavement support following the death of a spouse, family member or other significant individual. Telephone interviews were conducted with 28 bereaved older adults recruited from the Brief Risk Identification Geriatric Health Tool trial participants in three geographically diverse District Health Boards in New Zealand. Analysis adhered to the principles of grounded theory and followed the National Centre for Social Research 'Framework' approach. Findings indicate that family and friends play a fundamental role supporting older bereaved adults, both emotionally and practically. Existing community-based organisations were identified as an important source of support following bereavement. Despite the emotional, financial and practical challenges associated with bereavement, the majority of participants questioned the role of, need for and value of formal bereavement support services. Instead, study participants cited a combination of being older and previous life experiences as factors that had enabled them to cope with these largely 'expected' events. Moreover, they demonstrated considerable resilience in managing the emotional and practical changes associated with loss and bereavement. This study poses a challenge to the argument that the growing secularisation of society has led to an increase in the use of professional bereavement services over more 'traditional' forms of support, such as family, friends and community and religious organisations. The paper highlights the value of adopting a public health-based approach as a way of optimising bereavement support via the use of existing community organisations previously known to older people. This is particularly important in those countries where the provision of bereavement support is limited due to resource constraints.

What are the priorities for developing culturally appropriate palliative and end-of-life care for older people? The views of healthcare staff working in New Zealand.

This paper explores the views of healthcare staff regarding the provision of culturally appropriate palliative care for Maori, Pacific Island and Chinese elders living in Auckland, New Zealand. The ageing population is culturally and ethnically diverse and, along with other developed countries experiencing high levels of migration, the challenge is balancing the rise in numbers of older people from different ethnic and cultural groups with end-of-life care, which reflects personal values and beliefs. Two joint interviews and ten focus groups were conducted with eighty staff across a range of primary, secondary and speciality care settings in 2010. The findings demonstrated that participants viewed the involvement of family as fundamental to the provision of palliative care for Maori, Pacific Island and Chinese elders. For Maori and Pacific Islanders, healthcare staff indicated the importance of enabling family members to provide 'hands-on' care. The role of family in decision-making was fundamental to the delivery of and satisfaction with care for older Chinese family members. Care staff highlighted the need to be cognisant of individual preferences both within and across cultures as a fundamental aspect of palliative care provision. The role of family in 'hands-on' palliative care and decision-making requires care staff to relinquish their role as 'expert provider'. Counter to the prioritisation of autonomy in Western health-care, collective decision-making was favoured by Chinese elders. Providing families with the requisite knowledge and skills to give care to older family members was important. Whilst assumptions are sometimes made about preferences for end-of-life care based on cultural values alone, these data suggest that care preferences need to be ascertained by working with family members on an individual basis and in a manner that respects their involvement in palliative care provision.

Older people's views about home as a place of care at the end of life.

OBJECTIVES: To explore the attitudes of older people towards home as a place of care when dying. DESIGN: A two-phase qualitative study using focus groups and semi-structured interviews. PARTICIPANTS: Eight focus group discussions were held with 32 participants recruited from six purposively selected community groups representing older people in Sheffield, UK. A further 16 men and 29 women participated in semi-structured interviews. RESULTS: Participants identified that home was more than a physical location, representing familiarity, comfort and the presence of loved ones. While participants anticipated that home would be their ideal place of care during dying, practical and moral problems associated with it were recognised by many. Some had no informal carer. Others did not want to be a 'burden' to family and friends, or were worried about these witnessing their suffering. Those who had children did not wish them to deliver care that was unduly intimate. Concerns were expressed about the quality of care that could be delivered at home, particularly in relation to accommodating health technologies and providing adequate symptom relief. Worries were also expressed about those living in poor material circumstances. Mixed views were expressed about the presence of professional carers within the home. Although they were seen to provide much needed support for the informal carer, the presence of 'strangers' was regarded by some as intrusive and compromising the ideal of 'home'. DISCUSSION: Older people perceive factors they associate with 'home' as crucial to a good death, most notably presence of friends and family, but many anticipate that they would prefer to be cared for elsewhere when dying. These findings run counter to assumptions that the medicalised, institutional death cannot be a 'good death'. It is important that dying in hospital is not demonized, but rather efforts made to examine how institutional deaths can take on a more meaningful quality.