Staff responses to age‐related health changes in people with an intellectual disability in group homes

The purpose of this study was to explore how supervisors in group homes caring for people with intellectual disability responded to the development of age‐related health changes in their residents. Ten group home supervisors working in the disability sector were interviewed once. Data were analysed using Dimensional Analysis. The study identified several factors related to whether a resident could stay ‘at home’ or would need to be moved to residential aged care (nursing home) including: nature and extent of group home resources, group home staff comfort with residents’ health changes, staff skill at navigating the intersection between the disability and ageing sectors, and the supervisor’s philosophy of care. The ability of older people with an intellectual disability to ‘age in place’ is affected by staff knowledge about and comfort with age‐related illnesses, staff skills at navigating formal services, staffing flexibility, and the philosophy of group home supervisors. Despite the growing international concern for the rights of people with disability, particularly in relation to decision making, questions about the older person’s choice of residence and participation in decision making about what was best for them, were almost nonexistent. Rather, decisions were made based on what was considered to be in ‘the best interest’.     

Predicting supportive behavior of parents and siblings to a family member with intellectual disability living in institutional care

This feasibility study examines whether the theory of planned behavior can predict supportive behavior provided by either parents to their offspring-or adult siblings to their brothers and sisters-with an intellectual disability living in 2 Israeli institutional care facilities. Participants were 67 parents and 63 siblings who were interviewed at baseline regarding their intentions to visit their offspring or sibling in the institutional care facility, to contact the caregiving staff, and to accept visits at home. Parents' and siblings' behavior regarding visitation and supportive behavior was examined after 6 months by caregiving staff. Core findings indicated that subjective norms in siblings and parents predicted frequency of home visits. Perceived behavioral control predicted frequency of contact between siblings and staff. Differences between parents and siblings regarding their supportive behaviors are discussed with respect to social work practice.     

Contrasting perspectives of parents and service providers on respite care in Queensland,Australia

Abstract

Parent-carers need support to continue to care for their child with significant disability in their home. There has, however, been little evidence that respite interventions have consistent or enduring beneficial effects on carer well-being. This article reports the findings of a qualitative study which adopted an Appreciative Inquiry philosophy to interview parent-carers of children with significant intellectual and/or developmental disabilities on how formal support services have helped them maintain their health and well-being, and disability support staff on how they help such parent-carers foster their health and well-being. We conclude that better communication and collaboration between service providers and users, more targeted training of workers, and embracing a person-centred and family-centred approach to respite services are needed. In addition, clearer definition and communication of the scope of respite services are required to best support families of children with significant disability in their home.     

Formative evaluation on a physical activity health promotion program for the group home setting

Physical inactivity and high rates of chronic conditions is a public health concern for adults with intellectual disability. Few health promotion programs target the group home setting which is the pre-dominant form of residential accommodation for persons with intellectual disability. A process evaluation of a physical activity health promotion program, Menu-Choice, was conducted with five group home sites for adults with intellectual and developmental disabilities. Menu-Choice assists group home staff in including physical activity goals within resident schedules. The physical activity program was designed based on theoretical frameworks, community-based participatory approaches, and established health promotion guidelines for adults with disabilities. Fourteen program coordinators (age M 39; 77% females), 22 staff (age M 39; 82% females), and 18 residents (age M 59; 72% females; 56% ambulatory) participated. Results from the fidelity survey and program completion highlight potential challenges with implementation. Findings will assist with the refinement of the program for continued implementation trials in the group home community.     

Effective Responses to Offenders with Intellectual Disabilities: Generalist and Specialist Services Working Together

Abstract

Despite policies of deinstitutionalisation, many people with intellectual disabilities in developed western countries continue to live in mainstream institutional settings, such as correctional facilities, rather than in the community with support from disability services. This paper reports on the life stories of 10 people with intellectual disabilities, who had been imprisoned in adult correctional facilities in Queensland. The pathways taken by these 10 people into and out of prison are marked by significant abuse, neglect, and poverty. Significant disparity and disconnection is also displayed between the policies and service approaches, particularly between the disability, mental health, and correctional systems in Queensland. Based on these findings, a framework for practice, which spans both generic and specialist services, is suggested.     

Listening to Older Women with Dementia: relationships, voices and power

Four older women with dementia were interviewed about their experiences of their services. People with dementia are rarely asked for their opinions or judged to be fully legitimate persons. Gaps in previous research concerning people with dementia is presented, with respect to listening to people with dementia themselves and with respect to gender issues. The present study is described and the methodology for analysis, Brown and Gilligan's Voice Relational Method, is presented. This method was developed to listen to adolescent girls and has been used to listen to the voices of others who are disempowered in society. Its focus on relationships and issues of power was useful in this study. The methodology is presented in the context of debates within feminist and disability research. The results of the interviews are discussed, particularly with respect to power in the women's relationships, and particularly the relationships between the women with dementia and medical staff. Some implications of these power issues are presented and recommendations are made.     

Siblinghood through disability studies perspectives: diversifying discourse and knowledge about siblings with and without disabilities

Research about siblings where one has a disability has historically focused on the psychological outcomes of siblings of people with disabilities and has very rarely asked people with disabilities about their sibling relationships. This research focus represents the common individualizing approach and under-representation of people with disabilities that disability studies has argued against. Tracing the history of research about siblings and disability through de/institutionalization and towards current broader theories in disability studies, this article suggests that a range of disability studies perspectives can usefully de-individualize and expand research about siblings where one has a disability. Through examples of how materialist, feminist and inclusive perspectives can be applied to open up research about siblings and disability, the article argues that viewing siblinghood through the range of disability studies perspectives has the potential to expand this research field and represent new facets of siblings’ identities and lives together.     

Medical complexity and placement outcomes for children in foster care

ObjectiveMedical complexity threatens placement stability and permanency outcomes for children in foster care (FC). This study aimed to characterize for US children in FC: 1) medical complexity, using number of diagnosed types of disability as a proxy; 2) demographic and removal characteristics based on level of complexity; and 3) whether increasing levels of complexity were associated with foster care placement outcomes.MethodsThe analysis included children in FC, ages 0–21 whose disability status was clinically assessed and documented (n = 538,695). Using data from the FY 2014 Adoption and Foster Care Analysis and Reporting System, medical complexity was categorized (0–4 +) based on 5 disability types: emotional, hearing/vision, intellectual, physical, and other. Bivariate analyses (χ² tests, Kruskall-Wallis) compared the distribution of demographic and removal characteristics among complexity groups. Multiple logistic regression evaluated relationships between medical complexity and placement outcomes, including length of stay in FC, placement stability, and permanency.ResultsTwenty-three percent of the sample had 1 disability type, 7% had 2, 3% had 3, 1% had 4 +, and 67% had no disability. Children with increasing complexity were more likely to be older, older on FC entry, male, Black, non-Hispanic, placed in a group home or institution, have abuse, neglect, and/or child disability/behavior as reason for removal, and have poor placement outcomes.ConclusionChildren in FC with greater medical complexity are at risk for undesirable placement outcomes. By recognizing and addressing the unique needs of this vulnerable population, pediatric providers and child welfare staff may identify strategies to improve placement outcomes.     

The Music Engagement Program for people with Alzheimer’s disease and dementia: Pilot feasibility trial outcomes

Alzheimer’s disease and dementia are common, highly disabling conditions frequently requiring residential care. This exploratory proof-of-concept study aimed to determine if the specialised Music Engagement Program (MEP) was sustainable, acceptable, and effective in improving quality of life, emotional wellbeing, and depression symptoms in this population. Sixteen residents, six staff members, and three family and community members took part in the evaluation of the MEP for people living with dementia in a residential aged-care nursing home in Canberra, Australia. Multiple methods were used. Quantitative evaluation assessed residents’ depression symptoms (Cornell scale) at pre- and post-intervention, and emotional wellbeing pre- and post-session. Qualitative interviews with staff, and family and community members addressed the MEP’s acceptability and potential sustainability. Results showed residents’ mean depression scores were reduced from pre- to post-intervention (p = .039; d_z = 0.72). Interviews established multiple benefits for residents including improved mood, calmness, and reduced aggression. However, staff did not believe it was feasible to continue the MEP sessions beyond the trial period without an external facilitator, citing potential difficulties in adhering to internal activities due to time constraints. This pilot study provides encouraging preliminary evidence for the MEP’s acceptability and potential effectiveness for improving depression and wellbeing in this group.     

Siblings with disabilities: a duoethnography on the intersections between a sibling relationship and disability

A growing body of research examines the intersections between sibling relationships and disability. However, much of this research focuses on non-disabled siblings and how the disabled sibling affects them, thereby continuing to center able-bodiedness and able-mindedness while further marginalizing disabled people. This research centers the voices of two siblings who are both disabled. Using duoethnography, the researchers engaged in a dialog interrogating how disability has played a role in our sibling relationship. Our dialog demonstrated the complexity of our experiences as siblings and as disabled people. We found that physical disability, a status we do not share, created role asymmetry and power differentials in our relationship. Conversely, we discussed how our shared experience of having psychiatric disabilities had a positive influence on our closeness, and enhanced our ability to provide mutual support and engage in reciprocity. This duoethnography has important implications for the inclusion of disabled siblings in future research.     

My Room,My Home,My Self

Abstract

The material culture of home cannot be supplanted in its entirety when moving into an aged care facility. When the time comes, the decision of what to take and what to leave behind is not simple. This article presents the balance between practical and emotional considerations in the choice and presence of personal objects in the rooms of residents. Intersubjective relationships between material objects in the room and the people who enter that space is viewed through a narrative lens. In this way, it is the materiality of the room-as-home for the self, which is key. Three major themes relating to the objects in the room of the older person were found to be: 1. Safety, 2. Family, and 3. Home. These themes emerged from ethnographic research in an aged care setting. Participants included residents, their families, care staff, and management of the facility. The article contributes to understandings of material objects as carriers of identity and meaning in an aged care facility.     

Embodying and enacting disability as siblings: experiencing disability in relationships between young adult siblings with and without disabilities

Abstract

Where one sibling has a disability, research has examined the role of disability in sibling relationships; however, the majority has reflected a normative understanding of sibling relationships and a deficit understanding of disability. Reacting to this history, this paper draws on the concepts of embodiment (absorption of bodily experience into self/identity) and enactment (performance of self/identity) to provide a new way of understanding the role of disability in sibling relationships. Using data from an Australian study of young adult siblings with and without disabilities, the paper discusses how disability is embodied and enacted in: how siblings engage in supportive and conflictual talk and everyday chat with each other; how they enact recreation and seek connection with each other; and how they strive to understand and experience their emotions about each other. The paper ends by discussing how embodiment and enactment allow a clearer understanding of disability in sibling relationships, which may be empowering for siblings.     

Supporting people with intellectual disabilities to take part in focus groups: reflections on a research project

This paper discusses how support offered to people with intellectual disabilities who take part in research might affect the resultant data. People with intellectual disabilities from a long‐stay hospital, a day centre and a self‐advocacy group, all in the UK, participated in focus groups during a research project on nurse advocacy. Their supporters were staff employed by those services who were familiar with and to the group members. The support given to participants reflected the ethos of the services involved, relating either to the medical or the social model of disability. The paper argues that the philosophy of care influencing supporters of research participants with intellectual disabilities may have profound effects on the support provided. It may facilitate or inhibit open exchange of information. It may also aid clarification or cause contamination of the resultant data.     

‘Being friends means helping each other,making coffee for each other’: reciprocity in the friendships of people with intellectual disability

Friendship is an issue of concern for many people with intellectual disability. The aim of the research presented in this paper is to understand how people with intellectual disability experience friendship and what friendship means for them. A focus group was held with seven people with intellectual disability, who are members of a self-advocacy group. An inductive thematic analysis approach was used to analyse the data. The people that the research participants identified as their friends were fellow self-advocates, family members, support workers and co-workers. They also identified behaviours and actions that foster friendship and those that undermine it. The analysis shows how the research participants identified as friendships those relationships which had an element of reciprocity, while linking a lack of reciprocity with the absence of friendship. It is very important for non-disabled people to understand the perspectives of people with intellectual disability they live and work with.     

Managing Risk in Community Care of Older People: Perspectives from the Frontline

Abstract

Since the mid-1980s, Australian governments have focused on expanding community and home-based services for older people. This has led to increased levels of dependency, vulnerability, and complexity to be managed in the community. Consequently, aged care services have had to develop mechanisms for regulating and managing these increased risks, and risk management has become more central to the practices of professional workers in this field. This paper reports on some findings from a large-scale study that explores the way risk management policies have been translated into practice by community-based services in Victoria, Australia. Drawing on interviews with 18 frontline and management professionals employed in community aged care, we found that these workers were wrestling with a diverse and new range of institutional risks beyond those encountered in the actual delivery of frontline care. We found that these workers experienced “risk” in four different contexts, which often created demands for contradictory or conflicting responses. Here we examine these “contexts of risk practice”: professional workers' relationships with their clients, relationships with other service providers, the unregulated nature of the home as a work environment, and community expectations about the management of risk. Despite tensions that frequently arose, workers expressed strong professional commitments to their clients and were motivated to find positive resolutions amid competing interests. We conclude that tensions experienced by workers were embedded in the structural dimensions of institutional relationships and the systematic absence of shared understandings of “acceptable” risks in the community care of older people, rather than in the failure of professional agency.     

Meeting Them Where They Are: An Exploratory Study of Staff and Shelter Resident Perceptions of Homeless Women's Needs

Abstract

Only a small number of studies have surveyed homeless people about their needs, and none has compared these perceptions with those of homeless service providers. In this small, preliminary, exploratory investigation, both shelter residents and staff at one homeless shelter dedicated to serving dually-diagnosed adult women were queried about shelter resident need. Residents and staff agreed on the need for immediate, non-change-oriented services (such as assistance with overdue bills and housing) and some shorter-term services (such as education and job skills training). The two groups disagreed on the need for longer-term, change-oriented services, such as substance abuse treatment, education about activities of daily living, and health/counseling services (with more staff than residents perceiving such need). Two potential recommendations are discussed. Staff could consider altering the timing of treatment plan creation to increase engagement with homeless clients. Shelter directors and funders could consider modifying the measurement of client outcomes to include client progression toward longer-term change.     

Meeting communication needs: topics of talk in the nursing home

Nursing home residents primarily rely on staff for communication and interpersonal relationships. Challenged by staffing shortages and increasingly complex care, staff who provide the most communication with residents lack awareness and skills to effectively communicate with older adults. This study, a secondary analysis of staff-resident interactions from one nursing home, explores communication topics and the effects of an intervention. Staff from one unit were recorded during 2 hours of caregiving to provide a representative sample of their communication with residents. Staff then attended an educational program targeting improved awareness of communication needs and reducing "elderspeak". Recording was repeated post-intervention. Baseline conversations focused on activities of daily living (ADLs), personal-social, technical care, and health assessment. Post-intervention ADL talk decreased in staff-resident interactions, while personal-social topics increased. These findings suggest that residents' limited opportunities for communication with staff are primarily focused on care tasks. With increased communication awareness, staff can learn to modify conversational topics to better meet older adults' psychosocial needs.     

The Implications of Disability Protests for Social Work Practice

Abstract

This article examines the demands which have been made in the over 800 US protests this author has analyzed. Some demands are cross-disability, meaning they could apply to people with all types of impairments; these include demands for rights and accessibility in all domains. Other demands are disability-specific: they apply to people with specific types of impairments, ranging from mobility impairments to developmental disabilities. Many demands have been related to services, which can be either cross-disability or disability-specific. The paper examines the implications of these demands for social work practice. These include that disability be de-stigmatized by practitioners, that people with disabilities have choices, that they have control over their services, and that all aspects of social work practice be accessible to people with any type of disability.     

Social and Health Factors Affecting Community Service Use by Vulnerable Older People

Abstract

This article reports on Outcomes for older people with complex or chronic care needs, a study undertaken by the Brotherhood of St Laurence and La Trobe University, examining older Victorians’ use of community services following Aged Care Assessment Service (ACAS) recommendations that they remain living at home. The paper reports on interviews with older people and carers undertaken at three-monthly intervals, over 12 months. This paper contributes to understanding the factors that impede or facilitate uptake of community aged care services that are critical to meeting the needs of older people and their carers. The study found that among other factors social isolation, high carer burden, and the older person reporting low mood were important barriers to service uptake. Cost, waiting lists, and service satisfaction were also identified in qualitative data as influencing factors. The study concludes there is a need for better means of identifying and supporting older people and carers at risk to improve community service uptake.     

Natural neighborhood networks — Important social networks in the lives of older adults aging in place

Neighborhoods are important places of aging and meaningful contexts of life for many older people. The overall aim of this study was to explore the public life of older people aging in place in order to understand neighborhoods as the material places where public life occurs, networks as the social places of public life, and to examine how these neighborhoods and networks influence the experience of aging and wellbeing. Adopting a friendly visiting methodology, data was collected over an 8-month period using participant observation, visual methods and an innovative interview technique called the “go along method”. Data were analyzed using grounded theory and a coding strategy that integrated textual, visual, and auditory data. Results provide insights into the micro-territorial functioning of neighborhoods and highlight third places and transitory zones as significant sites for older residents. Embedded within these places is a natural neighborhood network — a web of informal relationships and interactions that enhance well being and shape the everyday social world of older adults aging in place.