Value pluralism about sexual intimacy in residential care.

BACKGROUND: The existing literature on sexuality and intimacy in residential care tends to focus on either the question of rights, or the value of autonomy. Where the literature does reference values other than autonomy, such values are considered in the context of being a guide to whether or not a resident is autonomous, rather than being important values in their own right. OBJECTIVE: This paper draws on qualitative data gathered as part of a larger study in order to inform practice on how care workers respond to intimacy issues that arise with residents with dementia and to inform a general ethics of sex and sexuality, demonstrating that an approach which permits value pluralism can be appropriate in certain contexts. RESEARCH DESIGN: The qualitative data referred to in this paper was gathered from semi-structured interviews undertaken as part of a larger mixed-method research project. The interview text was analysed using Thorne's methodological approach, interpretive description. PARTICIPANTS AND RESEARCH CONTEXT: The qualitative arm of the project consisted of semi-structured interviews conducted between October 2018 and October 2019 with participants (staff, residents and family members) recruited from 35 residential care homes in Aotearoa New Zealand. ETHICAL CONSIDERATIONS: Participation was informed, voluntary and written consent was gained before interviews. The project was approved by the Massey University Human Ethics Committee (Northern), number NOR 18/25. FINDINGS: Analysis of the scenarios presented in this paper shows that decision-making around sexual intimacy involving people with dementia in a residential care setting is complex and requires recognizing and weighing the different values that may be a in play. CONCLUSION: A focus on safety and consent to the exclusion of other values which matter morally in this context is a mistake which prevents care workers from providing appropriately person-centred care to residents, as policies which focus on the goal of care allow space for critical examination of issues which are likely to be highly context-sensitive.

Culture clash: responses to sexual diversity in residential aged care.

This paper explores attitudes of staff, residents and family members towards sexually diverse persons based on data from the first national study of its kind in Aotearoa New Zealand. The study was a two-arm mixed-method cross-sectional study using a concurrent triangulation design. The quantitative arm included the results of 433 staff surveys related to knowledge, attitudes, behaviours and beliefs about sexuality, intimacy and ageing. The qualitative arm included interviews with 77 participants including staff, residents and family members. This paper focuses only on sexual diversity. A generational cultural effect was noted among all respondents; younger participants expressed the most open and accepting views of diversity. Residents were aware that they mostly held the views of their generation; nonetheless they also looked to staff to set the tone. Staff held varying views and felt that residents would be less accepting; some staff felt the issue of intimate relationships was not something they were willing to discuss at intake. Facilities will want to establish policies about sexuality and intimacy and communicate those policies and practices to staff, residents and family members. Facilities may also wish to consider specific educational events about sexual diversity for residents.

Intimacy for older adults in long-term care: a need, a right, a privilege-or a kind of care?

BACKGROUND: To investigate attitudes of staff, residents and family members in long-term care towards sex and intimacy among older adults, specifically the extent to which they conceptualise sex and intimacy as a need, a right, a privilege or as a component of overall well-being. METHODS: The present study was a part of a two-arm mixed-methods cross-sectional study using a concurrent triangulation design. A validated survey tool was developed; 433 staff surveys were collected from 35 facilities across the country. Interviews were conducted with 75 staff, residents and family members. RESULTS: It was common for staff, residents and family members to talk about intimacy and sexuality in terms of rights and needs. As well as using the language of needs and rights, it was common for participants to use terms related to well-being, such as fun, happiness or being miserable. One participant in particular (a staff member) described receiving intimate touch as a 'kind of care'-a particularly useful way of framing the conversation. CONCLUSION: While staff, residents and family frequently used the familiar language of needs and rights to discuss access to intimate touch, they also used the language of well-being and care. Reframing the conversation in this way serves a useful purpose: it shifts the focus from simply meeting minimum obligations to a salutogenic approach-one that focuses on caring for the whole person in order to improve overall well-being and quality of life.

Iatrogenic loneliness and loss of intimacy in residential care.

BACKGROUND: There is an international trend for frail older adults to move to residential care homes, rather than ageing at home. Residential facilities typically espouse a person-centred philosophy, yet evidence points to restrictive policies and surveillance resulting in increased loneliness and diminished opportunities for intimacy and sexual expression. Residents may experience what has been termed social death, rather than perceive they are related to by others as socially alive. AIM: To consider how the loss of intimacy and sexuality in residents' lives contributes to iatrogenic loneliness experienced in residential care, and the importance of considering these issues together. RESEARCH DESIGN: The study utilised a constructionist methodology, investigating the meanings associated with intimacy, loneliness, and ageing. PARTICIPANTS AND RESEARCH CONTEXT: Qualitative data used in this study are drawn from a larger dataset of a mixed-methods study. Interviews were completed as follows: staff, 21 individual interviews, and two groups with a total of 13 additional people; residents, 26 interviews with 28 people; and family members, 12 interviews with 13 people. FINDINGS: Five key themes were identified in the data analysis: loneliness and relational identity, loneliness and functional relationships, loneliness and disrupted intimacy, loneliness and liminality, and loneliness and the built environment. ETHICAL CONSIDERATIONS: The study was approved by a University Human Ethics Committee. Participation was voluntary. Consent was gained and confidentiality upheld. DISCUSSION: Residents' expression of intimacy and sexuality can be compromised through paternalism, ageism, restrictive policies, care-rationing and functional care, alienating residents from sustaining and developing significant relationships. Attitudes and cultural beliefs of staff and family members about ageing and intimacy, compounded by architectural design, may intensify loneliness. CONCLUSIONS: Nurses have a pivotal role in ensuring policies and practice enhance social citizenship.

Ethics, intimacy and sexuality in aged care.

AIM: To analyse the accounts of staff, family and residents to advance ethical insights into intimacy and sexuality in residential care. BACKGROUND: Discourses of ageing readily construct people in residential aged care as postsexual, vulnerable and at risk of sexual exploitation, and therefore, expressions of intimacy and sexuality may be responded to as deviant and inherently risky. Staff may manage decision-making tacitly, without recourse to policies and education. DESIGN: The proof-of-concept study used a discursive methodology, identifying discourses that shape diverse meanings of intimacy, sexuality and ageing. Data analysis involved thematic analysis. METHODS: Semi-structured interviews were conducted with four participants in 2015 as part of a mixed-methods study. This article reports on the qualitative data. RESULTS: Four themes were identified in the data analysis: mediated intimate relationships and everyday ethics; self-referential morality; knowing the person then and now; and juggling ethical priorities. Data indicated that participants used their personal moral compass to inform their decision-making, without any related policies and applied ethics and communication education. As a result, staff described moral uncertainty and moral distress. Staff indicated that there were tensions in terms of the role of proxy decision-makers, as there were situations where staff believed they were more aware of residents' current wishes and cognitive capabilities than family members. CONCLUSIONS: Staff, families and residents routinely address intimacy and sexuality in aged care. Ethically informed education and policies may enhance the role of staff as advocates, ensuring older people living in RAC are as at home and autonomous as possible.

'Treating Africans differently': using skin colour as proxy for HIV risk.

AIMS AND OBJECTIVES: This paper examines the qualitative results of two studies of Black African new settler communities in New Zealand. The analysis investigates the issues of stigma and microaggressions and their effects on Black African communities. BACKGROUND: Previous work that investigated experiences of stigma faced by relatively early Black African new settlers to New Zealand found that new settlers experienced stigma, and their resulting isolation had negative implications for access to health and social services, regardless of HIV status. DESIGN: This paper is a meta-analysis of two published studies, using original qualitative data from each. METHODS: Researchers for the first study, Standing in the Fire, interviewed 13 Black Africans living with HIV who were new settlers to New Zealand. The second study, AfricaNZ Care, was a national mixed method study which surveyed 703 Black African new settlers, and included 131 participants in 23 different focus groups. The present analysis includes only the qualitative data from the second study. Some, but not most, participants of the second study were living with HIV. RESULTS: Black African identity is used as a proxy for HIV status among non-HIV specialist health care workers. Participants reported experiences of stigma and microaggressions based on their race, and a lack of knowledge about HIV in non-HIV specialist nurses and other health care workers. They also experienced poor health care and education practices, professional prejudice against colleagues living with HIV and institutional challenges including failure to protect patient confidentiality. CONCLUSIONS: HIV-related stigma and microaggressions remain significant problems, not only for people living with HIV but also for those perceived to be at high risk for HIV. RELEVANCE TO CLINICAL PRACTICE: Experiences of stigmatising behaviour by health care professionals have a broad and significant range of impacts on patients' health outcomes.

'Just talking about it opens your heart': meaning-making among Black African migrants and refugees living with HIV.

Meaning-making has emerged as a core construct in addressing trauma, loss or crisis. This paper considers how diasporic Black Africans living with HIV, who come from interdependent collectivist cultures where the norm is one of implicit support, extend their meaning-making strategies when faced with a diagnosis of HIV. In this qualitative study, 13 Black African migrants and refugees living with HIV in New Zealand were interviewed and the transcripts analysed. After their diagnosis, participants began a journey of reconceptualising situational and global meaning. They extended their meaning-making strategies to include a community of like others to gain explicit support. Caregivers in host countries must understand the meaning-making processes of HIV-positive Black African migrants in order to provide competent services that lead to good social and health outcomes. All healthcare and social services workers should regularly assess Black African migrants and refugees living with HIV for positive social connectedness as well as medication adherence and more specific health concerns.

Palliative Care, Intimacy, and Sexual Expression in the Older Adult Residential Care Context: "Living until You Don't".

Commonly, frail older adults move to residential care, a liminal space that is their home, sometimes a place of death, and a workplace. Residential facilities typically espouse person-centred values, which are variably interpreted. A critical approach to person-centred care that focuses on social citizenship begins to address issues endemic in diminishing opportunities for intimacy in the end-of-life residential context: risk-averse policies; limited education; ageism; and environments designed for staff convenience. A person-centred approach to residents' expressions of intimacy and sexuality can be supported throughout end-of-life care. The present study utilised a constructionist methodology to investigate meanings associated with intimacy in the palliative and end-of-life care context. There were 77 participants, including residents, family members and staff, from 35 residential facilities. Analysis identified four key themes: care home ethos and intimacy; everyday touch as intimacy; ephemeral intimacy; and intimacy mediated by the built environment. Residents' expressions of intimacy and sexuality are supported in facilities where clinical leaders provide a role-model for a commitment to social citizenship. Ageism, restrictive policies, care-rationing, functional care, and environmental hindrances contribute to limited intimacy and social death. Clinical leaders have a pivotal role in ensuring person-centred care through policies and practice that support residents' intimate reciprocity.

Not in the Brochure: Porneia and Residential Aged Care.

Introduction: Sexuality and intimacy in residential aged care (RAC) are receiving increased research attention. In this article, porneia refers to access to sex workers, as well as online pornography, and masturbation by residents in RAC. Sex work is legal and regulated in Aotearoa New Zealand. Methods: The present study was a two-arm mixed-method cross-sectional study using a concurrent triangulation design. A validated survey tool was developed. Data were collected in 2018-2019: 433 staff surveys were collected from 35 RAC across the country; 61 interviews were carried out with 77 staff, residents, and family members. Results: Staff opinions about sex work and pornography were inconclusive. Nevertheless, access to sex workers occurs in many RAC facilities across the country. Interviews demonstrated a diversity of responses among the three groups; staff attitudes are paramount. Conclusions: Some staff are prepared for resident requests for sex workers; others continue to look to policies and management for guidance, but such policies are often lacking. Most staff have adopted the language of needs vs. rights which dominates the literature. Policy Implications: Staff education on sexuality and facility policy is essential; education for residents and their families is also desirable. Facilities often over-notify third parties. Discourse about sexuality needs to move towards a person-centred, salutogenic approach.

Sexual harassment or disinhibition? Residential care staff responses to older adults' unwanted behaviours.

BACKGROUND: The ethical complexity of residential care is especially apparent for staff responding to residents' inappropriate sexual expression, particularly when directed towards care workers as these residents are typically frail, often cognitively impaired, and require ongoing care. OBJECTIVES: To explore staff accounts of how they made meaning of and responded to residents' unwanted sexual behaviours directed towards staff. This exploration includes whether staff appeared to accept harassment as a workplace hazard to be managed, or an unacceptable workplace violation, or something else. METHODS: These qualitative data are drawn from a national two-arm mixed method study in Aotearoa New Zealand undertaken in 35 residential care facilities. Semi-structured interviews were conducted with 77 staff, residents and family members. Interpretive description was used to analyse the data. RESULTS: Staff had numerous ways they used to respond to behaviours: (1) minimisation, deflection and de-escalation, where staff used strategies to minimise behaviours without requiring any accountability from residents; (2) holding residents accountable, where staff to some degree addressed the behaviour directly with residents; (3) blurred boundaries and complexities in intimate long-term care, where staff noted that in a context where touch is common-place, cognitive function was diminished and relationships were long-term, boundaries were easily breached; (4) dehumanising and infantilising residents' behaviours, where staff appeared to assert control through diminishing the residents' identity as an older person. It was evident that staff had developed considerable practice wisdom focused on preserving the care relationship although few referred to policy and education guiding practice. CONCLUSIONS: Staff appeared to be navigating a complex ethical terrain with thoughtfulness and skill. Care workers seemed reluctant to label resident behaviour as sexual harassment, and the term may not fit for staff where they perceive residents are frail and cognitively impaired. IMPLICATIONS FOR PRACTICE: Policy, education and clinical leadership are recommended to augment practice wisdom and ensure staff and resident safety and dignity and to determine how best to intervene with residents' unwanted sexual behaviours.

'Lavender retirement': a questionnaire survey of lesbian, gay and bisexual people's accommodation plans for old age.

A global increase in older people will also mean an increase in the numbers of lesbian, gay and bisexual people requiring residential support. All health practitioners working with older people need to be aware of the existence of older lesbian, gay and bisexual people in order to provide health care that is appropriate. This study describes lesbian, gay and bisexual people's accommodation plans for old age through a cross-sectional quantitative survey design. Participants were recruited through mainstream and lesbian, gay and bisexual media and venues. A total of 2269 participants completed the 133-item survey. When asked about what accommodation plans they had for their older years lesbian, gay and bisexual people identified that they were least likely to choose living in a retirement community/facility. However, if unable to live independently the majority of respondents identified they would prefer to live in a retirement facility that specifically catered for people who did not identify as heterosexual. This study has found that the residential support sector needs to be prepared to provide a health service that is person-centred, free from discriminatory practices and meets the needs of all health consumers regardless of sexual orientation.

Research Ethics with Gender and Sexually Diverse Persons.

Identifying and developing inclusive policy and practice responses to health and social inequities in gender and sexually diverse persons require inclusive research ethics and methods in order to develop sound data. This article articulates 12 ethical principles for researchers undertaking gender and sexually diverse social, health, and related research. We have called these the 'Montréal Ethical Principles for Inclusive Research.' While writing from an international social work perspective, our aim is to promote ethical research that benefits people being researched by all disciplines. This paper targets four groups of interest: 1. Cisgender and heterosexual researchers; 2. Researchers who research 'general' populations; 3. and sexually diverse researchers; 4. Human ethics committees. This article was stimulated by the 2018 Global Social Work Statement of Ethical Principles, which positions human dignity at its core. It is critically important to understand and account for the intersectionality of gender and sexuality with discourses of race, ethnicity, colonialism, dis/ability, age, etc. Taking this intersectionality into consideration, this article draws on scholarship that underpins ethical principles developed for other minoritized communities, to ensure that research addresses the autonomy of these participants at every stage. Research that positions inclusive research ethics at its foundation can provide a solid basis for policy and practice responses to health and social inequities in gender and sexually diverse persons.

The constitution of 'lavender families': a LGB perspective.

AIM: To explore and describe lesbian, gay and bisexual people's families of origin and families of choice. BACKGROUND: As a family group lesbian, gay and bisexual people engage with nurses when they interface with any health care service. All health practitioners need to be aware of the existence and constitution of lesbian, gay and bisexual families to provide appropriate health care, including health promotion and education. DESIGN: Survey. METHOD: From April to July 2004 a national survey of lesbian, gay and bisexual persons was carried out. Participants were recruited through mainstream and lesbian, gay and bisexual media and venues. A total of 2269 participants completed the survey instrument either electronically or via hard copy. The 133-item instrument included a range of closed-response questions in a variety of domains of interest. The article reports on results from the family and relationships domain. RESULTS: Findings identified that lesbian, gay and bisexual families present with a variety of both constructed and biological kinship ties and relationships. These relationships vary from supported to estranged in terms of biological family and exclusivity through to non-exclusivity with regard to partners. Variations also exist in relation to the presence or absence of children and whether these were born before or after 'coming out'. CONCLUSIONS: Lesbian, gay and bisexual families bring with them to health care services a wide array of life experiences. Therefore it is vital that when interacting with this group of people nurses avoid making assumptions about how gay, lesbian and bisexual people construct their identities and relationships. Furthermore, it may be difficult to ascertain a person's sexual identity when meeting them for the first time. RELEVANCE TO CLINICAL PRACTICE: Nurses need to ensure that they do not assume families seeking healthcare are heterosexual. Providing lesbian, gay and bisexual families with opportunities to disclose sexual identity without fear of disapproval or prejudice is integral to providing a quality and appropriate health service.

Lavender Islands: the New Zealand study.

Lavender Islands: Portrait of the Whole Family is the first national strengths-based study of lesbian, gay, and bisexual (LGB) people in New Zealand. The 133-item survey was made available both by website and paper copy from April to July 2004. Multidisciplinary interest areas were developed by a community reference group, and included identity and self-definition, families of origin, relationships and sexuality, families of choice, immigration and internal migration, wellbeing, politics, income and spending, education, careers and leisure, community connections, challenges, and spirituality. A four-axis model of sexual identity was also tested; 2,269 responses were received. Of these 83% were from the website; 45% of responses were from women and 54% from men. Responses identified a robust, highly educated, relatively high-income, politically active LGB community. Male and female respondents experienced same-sex relationships and identity in significantly different ways.

What do African new settlers in New Zealand 'know' about HIV? y.

AIM: To demonstrate the differences between objective and operational knowledges of HIV transmission and care in Black African migrants, and how these differences may be managed in a clinical interview. METHOD: This two phase national New Zealand study first estimated the resident Black African migrant population and HIV seroprevalence. The second phase collected surveys (n=703); focus groups (n=131 people) amplified the survey data. Community advisory groups comprising community leaders and people living with HIV were consulted throughout the study. RESULTS: Black African migrants reported good levels of basic knowledge of HIV on the survey, but demonstrated a range of culturally constructed beliefs and operational knowledge in focus groups. CONCLUSION: Study findings suggest that objective knowledge assessment is not sufficient, and that a contextual approach to understanding what people 'know' is essential, not only for HIV, but for the delivery of all health care education and interventions to Black African new settlers. Routine HIV education and testing, together with staff education, may increase acceptance of these interventions.

Stigma, lack of knowledge and prevalence maintain HIV risk among Black Africans in New Zealand.

OBJECTIVE: The AfricaNZ Health project aimed explore HIV risks in Black African communities in NZ with a view to informing HIV infection prevention and health promotion programs. METHODS: AfricaNZ Health was completed in two phases. The first developed desk estimates of the resident Black African population in New Zealand, and Africans living with HIV. The second comprised two arms: an anonymous survey administered at African community events and a series of focus groups around the country. RESULTS: High levels of knowledge and positive attitudes about HIV were more often found in older than younger age groups. Condom use was higher in the younger group than in older age groups. Traditional attitudes still inform some beliefs about HIV. Stigma about HIV and anyone at risk for HIV remains very high among Africans. Western sexual identity constructs are not meaningful. CONCLUSIONS: A culturally informed strategy for risk and stigma reduction is urgently needed. IMPLICATIONS: The existing prevention and care infrastructure, informed by MSM experiences, must address increased risk to Black African new settlers, but this is not a reason to discriminate or further stigmatise an already vulnerable population.

Perceptions of lesbian, gay and bisexual people of primary healthcare services.

AIM: This paper reports a study exploring people's perceptions of disclosure about lesbian, gay and bisexual identity to their primary healthcare providers. BACKGROUND: Disclosure of sexual identity to healthcare professionals is integral to attending to the health needs of lesbian, gay and bisexual populations, as non-disclosure has been shown to have a negative impact on the health of these people. For example, an increased incidence of suicide, depression and other mental health problems have been reported. METHOD: From April to July 2004, a national survey of lesbian, gay and bisexual persons was carried out in New Zealand. Participants were recruited through mainstream and lesbian, gay and bisexual media and venues, and 2,269 people completed the questionnaire, either electronically or via hard copy. The 133-item instrument included a range of closed-response questions in a variety of domains of interest. RESULTS: In this paper, we report results from the health and well-being domain. More women than men identified that the practitioner's attitude toward their non-heterosexual identity was important when choosing a primary healthcare provider. Statistically significantly more women than men reported that their healthcare provider usually or always presumed that they were heterosexual and in addition more women had disclosed their sexual identity to their healthcare provider. CONCLUSION: Nurses need to reconsider their approach to all users of healthcare services by not assuming everyone is heterosexual, integrating questions about sexual identity into health interviews and ensuring that all other aspects of the assessment process are appropriate and safe for lesbian, gay and bisexual people.