The experiences of familial mental illness stigma among individuals living with mental illnesses.

Persons with mental illnesses may experience stigma from their immediate family members in addition to other forms of stigma. Using semi-structured interviews, we investigated experiences of familial mental illness stigma among 15 people diagnosed with mental illnesses in a mid-sized city in Canada. We identified five themes that speak to participants' experiences of familial mental illness stigma and ways to reduce it. The themes include the following: diagnosis as a 'double-edged sword,' potential familial isolation, familial stigma as societal stigma localized, stories of acceptance, and confronting potential familial mental illness stigma. Participants' narratives indicate that familial mental illness stigma is rooted in the broader social or public stigma, which sees its way into familial relations as well. This stigma takes various forms, including relationship bias or unfair treatment, breakdown in romantic relationships, loss of status, verbal and emotional abuse, exclusion from decision-making, and alienation within their immediate and extended families. Familial mental illness stigma experiences negatively impact participant's psychological well-being and personal empowerment. However, participants also shared ways that family members create supportive environments or actively confront or prevent stigma. Overall, this study has contributed to knowledge on mental illness stigma, particularly familial mental illness stigma from the perspective of participants living with a mental illness in a high-income country. Suggestions for future research include a focus on strategies to prevent ongoing familial mental illness stigma and large-scale studies to explore familial mental illness stigma to understand why families might perpetrate stigma.

Participatory Research with Persons who Experience Mental Illness in Occupational Therapy: A Scoping Review.

Background. Persons who experience mental illness also face stigma and discrimination that frequently lead to a loss of ability to exercise autonomy and agency in their lives. Purpose. The range and breadth of literature exploring participatory research with persons living with mental illness are unknown in occupational therapy and occupation science. We initiated this study to fill this gap in the existing occupational therapy and occupational science literature. Method. Using the method of Arksey and O'Malley, we have conducted a scoping review to identify the range and breadth of literature. A qualitative content analysis was performed. Findings. A total of 34 articles were included in the narrative synthesis. The content analysis led to three related themes from the included studies: (1) coming together; (2) unique potential of participatory research; and (3) challenges in conducting participatory research. Conclusions. This review highlights that participatory research is well suited to research conducted with persons living with mental illness to support meaningful engagement and minimize stigma throughout the research process. This review can guide future participatory research and practice in occupational therapy and occupational science with persons living with mental illness.

Women's experiences of navigating chronic pain within the context of living with an episodic disability.

OBJECTIVES: Of the 6.2 million Canadians aged 15 years or older who live with disability, 61% have disabilities that are not static or continuous. These dynamic conditions are known as episodic disabilities and many disproportionately experienced by women. Chronic pain is also a common feature associated with many episodic disabilities. The purpose of this article is to explore the experience of chronic pain for women living with episodic disabilities. METHODS: This qualitative study draws on the tenets of interpretive description. Thirty women, with one or more episodic disabilities and chronic pain, participated in a semi-structured interview and answered questions about their chronic pain levels, using Von Korff et al.'s graded chronic pain scale. RESULTS: Women experienced gendered treatment within the healthcare system and reported that they were frequently dismissed by their healthcare providers, most often physicians. Healthcare professionals' practices around pain assessment were another common challenge for women. Women who were able to access financial support from government disability programs were more likely to access allied health professionals. Many of the holistic strategies that women researched and used to treat chronic pain were self-enacted. While diet, exercise, and other self-care activities are general health promotion strategies for all, they were seen as essential aspects of living that helped women have control over chronic pain and modifying the course of their episodic disability. CONCLUSION: Living with chronic pain and an episodic disability is complex. The findings of this study present the impact that gendered treatment in the healthcare system has on women who live with an episodic disability and experience chronic pain. It is evident that the current system did not meet the needs of the women in our study and system changes could result in better experiences, more disclosure of alternative therapies, and increase women's agency in their care.

Policies and Interventions to Reduce Familial Mental Illness Stigma: A Scoping Review of Empirical Literature.

Although research to date has shown that there can be no health or sustainable development without good mental health, mental illness continues to significantly impact societies. A major challenge confronting people with mental illnesses and their families is the stigma that they endure. In this study, empirical literature was reviewed to assess policies and interventions that seek to reduce familial mental illness stigma across four countries. We used Arksey and O'Malley methodological framework, and a qualitative content analysis was employed to augment the descriptive data extracted. Seven studies published between 2000 and 2020 were analyzed. We propose herein three themes that align with interventions to reduce familial mental illness stigma: transformative education, sharing and disclosure, and social networking and support. The findings indicate that persuasive and purposeful education directed at the public to correct misconceptions surrounding mental illness, with attention to language, may help in reducing familial mental illness stigma. Disclosure of mental illness is encouraged among persons with mental illnesses and their families as a strategy to enhance mutual understanding. Social sharing also affords persons with mental illnesses opportunities to engage with their peers at different levels within the public sphere. Apart from these recommendations, we have noted a paucity of broad governmental-level policies and interventions to comprehensively address the negative attitudes of families toward their relatives. Future work must address this gap to identify effective interventions to create healthier and supportive environments that address familial mental illness stigma.

Quality of Life and Mental Well-Being: A Gendered Analysis of Persons Experiencing Homelessness in Canada.

Homelessness has negative implications for mental well-being and quality of life. This paper identifies the quality of life variables that contribute to positive or negative wellbeing, reporting on a regression analysis from 343 individuals experiencing homelessness in Canada. Results indicate that a lack of sleep duration and quality reduced mental well-being for both genders, not having access to food and/or hygiene facilities decreased men's well-being, and engaging in illegal subsistence strategies, such as selling drugs, negatively impacted women's mental well-being. For persons experiencing homelessness, mental well-being and quality-of-life are gendered outcomes of their limited access to social determinants of health.

The Deinstitutionalization of Psychiatric Hospitals in Ghana: An Application of Bronfenbrenner's Social-Ecological Model.

Institutionalization of people living with mental illness has evolved over the years, especially in the 19th and early 20th century. This has created over crowdedness in various psychiatric institutions, specifically in low and-middle-income countries, including Ghana. The objective of this study is to use Bronfenbrenner's Social-Ecological Model (1979) to propose a process for deinstitutionalizing psychiatric services in Ghana while supporting a transition to community-based mental health care. Using the concept of Bronfenbrenner's Social-Ecological Model, this article explores some benefits and difficulties with the concept of deinstitutionalization with regards to mental health care services in Ghana. Individuals living with mental illness will be more comfortable in various communities in Ghana where education on stigmatization and discrimination is heightened to subsequently prevent it. Education and intervention policies are required to intensify the campaign to win the support of all people in the community. Residents of Ghana should learn to say no to stigma and discrimination among people living with mental illness.

Community health promotion with people who are experiencing homelessness.

Homelessness is an experience of being displaced. Once removed from their personal places, homeless people are barred access to healthy places in which to be. Health clinics for people who are experiencing homelessness offer an opportunity to create health-promoting places. In this study, we explore how place is experienced within a community health clinic for people who are experiencing homelessness. A critical ethnographic methodology was used. Results illustrate how clients and providers contested the space of the clinic. Discourses of safety, health promotion, and privacy were enacted, altered, and resisted in a constant practice of culture-making. Physical components of the space became conceptual components of how place and power in place were understood by clients and providers. Results point to the importance of conceptualizing service users as the key stakeholders in their care, considering how places may be more or less health promoting, and rethinking how safety is conceptualized.

Relational experiences of family caregivers providing home-based end-of-life care.

The multiple relationships involved in home-based end-of-life care have received little systematic analysis. As part of a focused ethnographic study examining client-caregiver-provider relational care experiences within the sociocultural context of home-based end-of-life care, this article describes the provision of end-of-life care to older adults with advanced cancer from the perspective of family caregivers. Data were collected through in-depth interviews (n = 16) with 4 family caregivers and participant observations in each of the 4 households over a 6- to 8-month period. Family caregiving in home-based end-of-life care was portrayed in this study as 3 dialectical relational care experiences: (1) prioritizing care recipient needs-ignoring own needs, (2) feeling connected-feeling isolated, and (3) juggling to manage-struggling to survive. Study findings suggest that the sociocultural context of end-of-life care is not conducive to quality care and provide several insights for future directions in nursing practice, policy, and research.

Negotiating relational practice patterns in palliative home care.

Providing palliative care in the home presents a variety of challenges for nurses and other care providers. As part of a focused ethnographic study examining client/caregiver/care-provider relationships within the socio-cultural context of home-based palliative care, this paper describes the provision of palliative care to Canadian seniors with advanced cancer from the perspective of nurses. Data were collected through in-depth interviews (n=19) with three palliative care nurses and participant observations in four households over a six-to-eight-month period. Home-based palliative care nursing was depicted in this study as a dialectical experience, revealing three relational practice patterns: making time-forfeiting time, connecting-withdrawing, and enabling-disabling. Nurses attempted to negotiate the tensions between these opposing approaches to palliative care. Study findings suggest that the sociocultural context of palliative care is not conducive to high-quality palliative care and provide several insights related to future directions for practice, policy, and research.

Dementia home care resources: how are we managing?

With the number of people living with dementia expected to more than double within the next 25 years, the demand for dementia home care services will increase. In this critical ethnographic study, we drew upon interview and participant data with persons with dementia, family caregivers, in-home providers, and case managers in nine dementia care networks to examine the management of dementia home care resources. Three interrelated, dialectical themes were identified: (1) finite formal care-inexhaustible familial care, (2) accessible resources rhetoric-Iinaccessible resources reality, and (3) diminishing care resources-increasing care needs. The development of policies and practices that provide available, accessible, and appropriate resources, ensuring equitable, not necessarily equal, distribution of dementia care resources is required if we are to meet the goal of aging in place now and in the future.

Evidence-based refinement of health and social services: exploring the possibilities of intravention research.

To promote evidence-based refinement of quality health and social services delivery and care, decision makers, researchers, and practitioners often undertake intervention research. Intervention research tests and describes new strategies for achieving desired outcomes. But theoretical, methodological, and practical issues continue to plague even alternative participatory approaches to intervention research, raising questions about its potential for promoting quality health and social services and care. In response to this persistent challenge, the authors of this article propose a radical solution, namely intravention research, laying out its unique features as well as its theoretical and practical implications. Their conceptualization sets the stage for dialogue on options for advancing research methodologies and methods that might better promote evidence-informed health and social services.

Development and validation of the double duty caregiving scale.

In order to gain an understanding of double duty caregiving (DDC), defined here as the provision of care to elderly relatives by practising health professionals, a DDC scale has been developed. This study tests the psychometric properties of the scale. Survey data were collected from a random sample of 187 female registered nurses who were employed and also provided care to elderly relatives. Nine factors contributing to DDC emerged from exploratory factor analysis. The DDC subscales were moderately correlated with the standardized health measures included in the study.The caregiving interface (degree of blurring between the professional and personal caregiving domains) was significantly negatively correlated with well-being and mental health.This result extends our understanding of the supports needed by those providing DDC.

Improving gerontology content in baccalaureate nursing education through knowledge transfer to nurse educators.

Across practice settings, most nursing care is provided to older adults. Yet most nurses receive limited education to care for older adults, especially those with complex needs. A Knowledge Exchange Institute for Geriatric Nursing Education brought together 31 Canadian nursing faculty members and nursing doctoral students and provided them with tools and resources to enhance teaching and curriculum in baccalaureate nursing programs. Guided by the Knowledge-to-Action Process model, participants received usable summaries of the best research evidence about care for older adults and tools to increase the likelihood of successful integration of these resources in their teaching and curriculum. Feedback from participants indicates that their personal goals and the goals of the Knowledge Exchange were met. Through a public interactive wiki, participants and others will continue the process of knowledge exchange to improve nursing education and nursing care for older persons.

Accelerating client-driven care: pilot study for a social interaction approach to knowledge translation.

This study piloted a knowledge translation (KT) intervention promoting evidence-based home care through social interaction. A total of 33 providers organized into 5 heterogeneous, geographically defined action groups participated in 5 researcher-facilitated meetings based on the participatory action model. The KT evidence reflects an empowering partnership approach to service delivery. Exploratory investigation included quantitative pre-post measurement of outcomes and qualitative description of data, presented herein. The critical reflections of the groups reveal macro-, meso-, and micro-level barriers to and facilitators of KT as well as recommendations for achieving KT. Insights gleaned from the findings have informed the evolution of the KT intervention to engage all 3 levels in addressing barriers and facilitators, with a conscious effort to transcend "push" and "pull" tendencies and enact transformative leadership. The findings suggest the merit of a more prolonged longitudinal investigation with expanded participation.

Client-nurse relationships in home-based palliative care: a critical analysis of power relations.

AIM: To elicit an in-depth understanding of the sources of power and how power is exercised within client-nurse relationships in home-based palliative care. BACKGROUND: As in all social relations, power is present within client-nurse relationships. Although much research has focused on interpersonal relationships in nursing, the concept of power within the client-nurse relationship in palliative care settings has not been extensively investigated. METHODS: Applying a critical lens, secondary qualitative data analysis was conducted. Seventeen nurse and 16 client transcripts from a primary study were selected for secondary data analysis. These 33 transcripts afforded theme saturation, which allowed for both commonalities and differences to be identified. Data analysis involved analytic coding. RESULTS: Study findings help make explicit the underlying power present in the context of home-based palliative care and how this power is used and potentially abused. In analysing the sources and exercise of power, the linkage between macro and micro levels of power is made explicit, as nurses functioned within a hierarchy of power. The findings suggest that educational/occupational status continues to be a source of power for nurses within the relationship. However, nurses also experience powerlessness within the home care context. For clients, being able to control one's own life is a source of power, but this power is over-shadowed by the powerlessness experienced in relationships with nurses. The exercise of power by clients and nurses creates experiences of both liberation and domination. CONCLUSIONS: Nurses who are willing to reflect on and change those disempowering aspects of the client-nurse relationship, including a harmful hierarchy, will ultimately be successful in the health promotion of clients in home-based palliative care. Additionally, it should be recognized that nurses work within a specific health system context and, therefore, their practice is influenced by policies and funding models implemented at various levels of the health care system. RELEVANCE TO CLINICAL PRACTICE: The insights gained through this investigation may assist nurses and other health professionals in reflecting on and improving practices and policies within home-based palliative care and within home care in general.

Mother-adult daughter relationships within dementia care: a critical analysis.

Evidence suggests that intergenerational caregiving between mothers and daughters will become increasingly common, and yet, we know very little about the specific relationships between adult daughters and their mothers with dementia. Guided by socialist-feminist theory and a life-course perspective, 15 mother-adult daughter dyads participated in two individual, semistructured interviews. Data analysis revealed four dynamic types of mother-daughter relationships: custodial, combative, cooperative, and cohesive. Custodial and cooperative relationships mainly focused on the provision of and receipt of tasks, whereas combative and cohesive are emotion focused. At the same time, custodial and combative relationships are based on deficits compared with strength based cohesive and cooperative relationships. In addition, certain contextual factors, such as expectations of care and levels of support, shaped the development of these relationships. Moreover, study findings highlight a number of implications for practice, policy, and research necessary to support individuals with dementia and their families.

Perspectives of women with dementia receiving care from their adult daughters.

The caregiving experience within Alzheimer disease is fairly well documented. However, little research has been conducted from the perspective of the person living with dementia. The purpose of this study, part of a larger qualitative investigation of mother-daughter relationships within the care process of dementia, was to elicit the perceptions and experiences of mothers receiving care from their adult daughters. Guided by feminist and life-course perspectives, the researchers conducted in-depth, semi-structured interviews with a diverse sample of 10 community-dwelling women with mild to moderate cognitive impairment. In general, the health perceptions and experiences of the women were shaped by gender and how its meaning is constructed. While mothers reported mostly positive relationships with their daughters, cultural ideologies of individualism and familism manifested in feelings of "grateful guilt." Participants managed their contradictory experiences of receiving care from their daughters by doing care, undemanding care, determining care, and accepting care. The authors recommend changes in practice, policy, and research, with the aim of addressing relevant social determinants of health such as gender and social support, thereby promoting the health and well-being of women with dementia.

Power and empowerment: critical concepts in the nurse-client relationship.

Two key concepts in health promotion within the nurse-client relationship are power and empowerment. Theorists and researchers have not achieved consensus on how they are to be defined and addressed. However, both power and empowerment are recognized to occur at macro and micro levels, and as such need to be addressed at each level. Using a critical nursing perspective, this article explores these concepts it identifies concerns that arise around power and risks that arise in empowerment practice. Nurses are challenge to develop a new way of seeing empowerment practice, and encouraged to focus on 'being with' clients, rather than 'doing to' them.