Dementia Patients’ Transition to Residential Aged Care: Carers’ and Social Workers’ Experiences

Many people with dementia eventually require residential aged care, frequently preceded by a hospital admission. Family carers often find the process challenging and disempowering, as they are expected to move their family member to residential aged care quickly. This article reports on findings from a small Australian qualitative study focusing on the provision of information, support and resources, and discusses the findings in relation to person-centred care and critical social work. Social workers completed an online survey and participated in focus groups, and carers were interviewed. The research found that carers valued the information, support, and resources provided by social workers and other hospital staff. They needed time to adjust to the dementia diagnosis and wanted a supportive person to talk to about the written information. The social workers wanted an improved approach to the preparation and communication of information, and a more consistent approach to family meetings.     

EDITORIAL

Abstract

Alzheimers Disease is a form of progressive dementia associated with diffuse degeneration of the brain, and has become more common in Hong Kong as the population has aged. Individuals with Alzheimers Disease may experience symptoms such as memory loss, poor judgement, and incontinence. They generally lack selfcare ability and require considerable care as their illness progresses. As the traditional caring function of Chinese families has been eroded, individuals with the disease pose new challenges to their family caregivers. Research using an intensive interview method revealed that family caregivers of people with Alzheimers Disease suffer heavy psychosocial, financial, and physical burdens.     

Getting “Bi” in the Family: Bisexual People's Disclosure Experiences

There are many similarities in gay, lesbian, and bisexual individuals' coming out experiences, but bisexual people face unique challenges. Despite this, an explicit focus on bisexual people is missing from family research. Using family systems and cultural sociological perspectives, the authors analyzed how social and cultural factors shape disclosure processes for bisexuals as they come out to multiple family members. After analyzing qualitative data from a diverse group of 45 individuals, they found that bisexual people navigate monosexist and heterosexist expectations in their family relationships. Cultural constructions of bisexuality shape the ways that bisexual people disclose their identities, including how they use language to influence family members' responses in desirable ways. Relationship status also influences bisexual people's disclosure strategies, as a romantic partner's gender is meaningful to family members' understandings of their sexual orientation. The findings highlight the importance of addressing cultural and social contexts in understanding sexual minority people's coming out processes.     

The Kids Say Project: Supporting Children to Talk about their Experiences and to Engage in Decision-making

Research and policy calls for hearing the voices of children and youth in out-of-home care and involving them in decisions about their own lives. The “Kids Say” cards were designed to facilitate this engagement, particularly with Indigenous children and youth. A feasibility study explored the extent to which the Kids Say cards were acceptable to young people, and prompted discussion about their lives and what is important to them. The study involved 47 participants, aged 7 to 18 years, from three cultural groups: Aboriginal n?=?20; culturally and linguistically diverse (CALD) n?=?10; non-Indigenous English-speaking n?=?17. The cards were found to be appealing to all three groups, and to facilitate child and youth voice. Findings also did not differ significantly according to gender or age. These preliminary findings indicate the potential value of appropriate practice tools to support children and youth to share their experiences and participate in decision-making.

IMPLICATIONS

• Engaging resources, such as the Kids Say resource, are potentially valuable in supporting practitioners to encourage children and young people to share their experiences and participate in decision-making about their own care and service needs.

• Training in creating safe sharing contexts for children and young people is essential. While emphasis is often given to gathering child voices, there is a need for at least equal emphasis on respectful adult listening.

     

Carers of People with Mental Illness from Culturally and Linguistically Diverse Communities

Australia is a multicultural country and it is common for families from culturally and linguistically diverse (CALD) communities to care for their relatives with mental illness. However, there are limited Australian studies examining the experiences of informal carers of people with mental illness from CALD communities. A scoping review was conducted to search for peer-reviewed articles reporting the perception of carers regarding their caregiving experiences, wellbeing, and needs. Using cultural responsiveness as a conceptual framework, this study analysed the findings of the identified studies to generate themes. Findings show that carers experience severe caregiving challenges and face considerably poor culturally oriented services in mental health. Social work implications concerning the need to provide culturally responsive practice in mental health services are discussed.     

Young People Leaving Care: Participatory Research to Improve Child Welfare Practices and the Rights of Children and Young People

Abstract

This paper discusses participatory research with young people who are leaving public care in Finland to begin independent lives. The aim of the research, organised by SOS Children's Villages International, was to bring about change in alternative care arrangements, particularly those involving young people's transition to independence. The project used a participatory research design based on employing care-leaving peers as co-researchers. This paper adheres to the methodological principles of empowerment in analysing the personal experiences of young people leaving alternative care with the goal of informing good practice. The findings suggest that the peer research method can be an effective means of empowering young people to develop research skills and to be involved in knowledge production, as well as serving as a means of promoting improved services for “care-leavers”, those young people who are leaving either foster care or institutional care. The participatory and peer research method challenges the traditional understandings of expertise and knowledge production. Although the hierarchy between adult researchers and young people as co-researchers is still evident, the method provides possibilities for better understanding the social- and health-service systems and their challenges and pitfalls from a user's perspective.     

Family Experiences of Caring for Relatives Who Have Received Electroconvulsive Therapy (ECT)

The research literature on family members’ experiences of the use of electroconvulsive therapy (ECT) is limited. This article explores the perspectives of family members whose relatives had received ECT. Drawing on a social constructionist perspective, this qualitative study collected data using in-depth interviews with nine families in South Australia, to examine how family members constructed the supports and challenges they experienced. The research found that families experienced a range of social and service system barriers, including social stigma and isolation, and limited support from health professionals. They had to negotiate caring expectations within a social context that stigmatised both mental illness and ECT. A need for ECT-specific mental health support groups was identified.

IMPLICATIONS

• Social workers’ roles in Australian hospitals could be further expanded to accommodate supporting families whose relatives have received ECT, referring families to community support, and advocating for specialist support post-ECT treatment.

• Social workers can further articulate their unique contribution to community care post-ECT treatment and advocate for supporting families.

• Increased focus on ongoing and preventative care for supporting families is a potential growth area for social workers in mental health.

     

Contact with Outdoor Greenery Can Support Competence Among People with Dementia

SUMMARY

Dementia disorders are increasing among populations all over the world due to growing life expectancy. Since dementia widely affects cognition, especially short-term memory and orientation, people with dementia are more dependent on provisions from their environment to act successfully than those without dementia. Green environments have been associated with reduced autonomic arousal leading to stress recovery and improved affective state. In this paper we introduce theories and empirical studies about healing and green environment, and present our findings on the impact of plants, and of seeing and being outdoors on the well-being of people with dementia in day care and in residential care. The first study is based on a survey of 65 nursing staff from ten residential care homes. The second study involved 123 people with dementia from two day care units and six residential care units.     

The family caregiving context among adults with disabilities: A review of the research on developmental disabilities,serious mental illness,and traumatic brain injury

ABSTRACT

A majority of adults with serious disabilities are cared for in the home by family members. Guided by an ecological framework, this article presents the findings of a literature review of research on family caregiving and family support for adults with disabilities. This review included 33 research studies published between 2000 and 2015 focused on three disabilities: Developmental disabilities, serious mental illnesses, and traumatic brain injury. A synthesis of the findings underscores the critical role that family caregivers occupy in addressing the needs of their loved one with a disability; however, the needs of the caregiver are insufficiently met by existing service approaches. A better understanding of the unique needs and strengths of the family support context of caregivers and care recipients is needed, giving greater attention to ethnic, racial, and cultural considerations in future research.     

Family support in late life: A review of the literature on aging,disability, and family caregiving

ABSTRACT

For older adults and people with disabilities in the United States, family caregiving is an important part of remaining at home and in the community. As care recipients and caregivers age, family dynamics change, and the health, social, and financial impacts of this (largely unremunerated) work have implications for individuals, families, and social policy. In this review, the authors map the literature across multiple fields related to disability and aging to understand caregiving in late life, what it means to be an older caregiver and/or to care for older people. The authors summarize the findings of 97 articles to address the care, services, and supports family caregivers provide for older adults; negative and positive impacts for caregivers serving in this role; supports that family members use or need; and societal impact of family caregiving. Much of the literature describes the work family caregivers provide and negative impacts of caregiving. Less attention is devoted to caregiving benefits, supports used by family caregivers, and societal impacts. The authors conclude with an agenda for future research that attends to the need for research that includes: more diverse samples, new types of caregivers, longitudinal data, qualitative data and analysis, and comparative research.     

Dealing with Institutional Abuse in a Multicultural South African Society

SUMMARY

The climate of socio-political transformation in South Africa together with a society of complex multicultural diversities creates enormous challenges regarding the care of the elderly in institutions. Institutional abuse in South Africa may present in a unique way, as a result of issues relating to policy and legislation and care delivery systems. The need for previously segregated groups to integrate and understand the various cultural practices of people from different socio-economic backgrounds further compounds the opportunity for abuse in homes for the aged which are undergoing transformation.     

‘Who do I turn to if something really bad happens?’ Key working and relationship-based practice in residential child care

ABSTRACT

This article explores the psychodynamics of relationship-based practice from the perspective of young people in residential care. This research involved qualitative semi-structured interviews with 10 care leavers, aged 18–24 years, who had been in residential care in Ireland. Drawing selectively from that research, this article reports their views and experiences of key-working and how relationship-based practice acted as a reparative method within their experiences of care and aftercare. Similar to previous research, this study underscores the necessity to ensure that children in care are cared for and supported by a trusted adult. In addition, based on this study, the role of a key worker appears capable of providing this ideal type of supportive relationship. It also highlights the importance of the care system working to provide consistency and support for the young people and confirms the importance of relationships with trusted adults, such as key workers.     

Challenges to Employment in Newly Emerging African Communities in Australia: A Review of the Literature

Abstract

Newly emerging African communities (NEAC) in Australia face challenges in accessing employment, with consequences for both the immigrant and Australian host communities. This article presents a review of the literature on challenges to employment for NEAC in Australia. It gathers together, synthesises, and analyses previously fragmented evidence that should be used to inform social policy change and social program improvement. It focuses on African refugees and immigrants from the Horn of Africa region (Eritrea, Ethiopia, Somalia, and Sudan) who have settled in Australia in the past 10 years. The review documents the challenges to employment for this group and highlights policy and practice implications including: streamlining the qualification recognition process; introducing culturally and linguistically diverse (CALD) specialised job networks; resisting anti-NEAC sentiments, challenging stereotypes, and promoting diversity; introducing incentives to undertake volunteer work; revitalising existing English as a second language pedagogy; empowering CALD-specialised counselling services; and establishing CALD-specialised research and advocacy entities.     

Introduction to the special issue: Family Support of Persons with Disabilities Across the Life Course

ABSTRACT

Family members are a key source of services and supports for people with disabilities across the life course, helping people to remain living at home and in the community. As part of an effort to generate a strategic plan for research on family caregiver experiences and supports, this issue includes four literature reviews on the current state of research, each specific to a life course stage. This introduction presents a framework that combines life course and ecological perspectives to organize the existing literature of family caregiver support and to identify gaps in existing research, as well as opportunities for future investigations.     

Ethnic Variations in Dementia Caregiving Experiences

Abstract

The proportion of minority elders with dementia in the United States is projected to rise substantially. This study elicited perceptions of the caregiving experience from informal caregivers of persons with dementia, across different ethnicities. Six focus groups with 47 dementia caregivers of African-American, Chinese-American, Euro-American, and Hispanic-American ethnicities were conducted. Caregiving roles, concern about the person with dementia, and unmet information and resource needs were expressed similarly. However, perspectives differed across ethnic groups on stigma surrounding dementia, benefits of caregiving, spirituality/religion to ease caregiving burden, and language barriers and discrimination. Findings suggest that interventions to reduce disparities in dementia care quality need to address ethnic variations in caregiving experiences.     

The Adolescent Sexual Development of African American Gay Men with AIDS: Implications for Community-Based Practice

ABSTRACT

This qualitative study describes the adolescent sexual development of ten African American gay men living with AIDS. The informants retrospectively describe the challenges of being a gay adolescent in a mostly heterosexist and homophobic environment. They report unsupportive homophobic and heterosexist family members, community members and school officials. They also describe their burgeoning sexual orientation, sexual initiation as well as consensual and non-consensual sexual experiences with their peers. Additionally, several informants describe seeking sexual experiences with adult men. Later they suggest the adult men became their primary sources of emotional and psychological support. Implications for community practice, intervention and research with both African American gay adolescents and adult men living with AIDS are discussed.     

Meeting the needs of adolescents living with HIV through home based care: Lessons learned from Tanzania

PurposeHome based care is central to HIV care and support throughout Africa. Most programs have not addressed the unique needs of adolescents living with HIV, who display lower retention in HIV care and treatment adherence. This study examined the experiences of adolescents living with HIV in Tanzania in order to identify ways to improve home based care to better meet their needs.MethodsWe conducted a qualitative study in Dar es Salaam and Tanga Region consisting of in-depth interviews with 14 adolescents living with HIV, 10 primary caregivers, and 12 providers assigned to their households. Interviews examined adolescents' experiences of growing up with HIV, perceptions of current home based care, and challenges in increasing acceptability of services.ResultsWe found the program did not align well with adolescents' expectations. Adolescents felt home based care to be more relevant to their caregivers and did not form independent relationships with providers. They expressed anxiety that participation might lead to inadvertent disclosure of their status and consequent discrimination. Both adolescents and their caregivers felt disappointment that no material or financial support was available despite widespread poverty, although they appreciated receiving psychosocial support and practical referrals. Providers demonstrated motivation to work with adolescents but acknowledged lacking requisite skills such as ways to communicate with young people and key messages to deliver.ConclusionsDespite challenges, we identified feasible adaptations to make home based care more adolescent-centered. These include actively engaging adolescents in program design, improving provider training in communication with adolescents, and proactively addressing unrealistic expectations. Finally, increasing referral links to a wider range of services could improve program effectiveness by integrating it into a broader development approach.     

Family members’ experiences and management of resident-to-resident abuse in long-term residential care

ABSTRACT

Objectives: Resident-to-resident (RRA) abuse is increasingly recognized as a significant problem in long-term residential care.Families have a constant presence in this setting, yet their inclusion in research about RRA is minimal. The purpose of this study was to examine family members’ experiences and management of RRA. Methods: The methodology was critical ethnography.Twelve family members participated in in-depth interviews and 56 hours of participant observation were conducted. Data were analyzed thematically. Results: The main themes illuminate families’ experiences of RRA in a context that largely normalizes it.In the absence of formal supports, families developed a range of management strategies, ranging from passive to active intervention.Organizational factors, such as staffing levels and mix, and the physical environment also contributed to RRA. Discussion: Families are actively managing RRA in long-term residential care. Policies and programs, including educational supports, should be developed to validate and support families.     

Family Law and Foster Care

Abstract

There are challenges associated with teaching family law and public policy; however, cooperative learning, a recognized teaching strategy that serves to enhance students' overall development, including academic, cognitive, and social growth, can be used successfully to teach this subject matter. In this paper, we describe how we taught students about some aspects of qualitative research methods, foster care policies, and pertinent family law concepts and practices; this was done through the initiation of a research team of undergraduate and graduate students. We explain the development of a cooperative research team, and the methods used to teach family law, using foster care as a context. The observed outcomes for students and faculty members are offered to readers.     

Experiences of vulnerability due to loss of support by aged parents of emigrated children: a hermeneutic literature review

ABSTRACT

In disrupted families due to migration individual members support each other through transnational care. The care is often reciprocal as the members who are left behind support the members who emigrated and in return receive care from the emigrated family members. Aged parents who get left behind, however, often become vulnerable. The hermeneutic literature review shows that social, psychological or emotional and economic vulnerability are experienced. They have to deal with cultural challenges as their children form part of a new culture in their receiving country. Strong feelings of loss, helplessness and loneliness are experienced. The emigration of their children may also contribute to the financial vulnerability of the elderly.