Impact of a multicomponent support services program on informal caregivers of adults aging with disabilities

A multicomponent support services program was implemented for veterans aging with disabilities and their informal caregivers (n = 42 dyads). Caregiver outcomes (satisfaction, physical and mental health status, burden, and benefits) were evaluated before and after program use. Caregivers reported significant improvements in mental health post-program. Caregivers who provided care to individuals with impaired physical health experienced meaningful improvements in burden after the support services were rendered. Supporting caregiver health status through such programs is vital to preserve noninstitutional long-term care for persons aging with disabilities, particularly when care is provided over many years to an individual with physical impairments.     

Children and their child care caregivers: profiles of relationships

One thousand three hundred and seventy-nine (682 girls) caregiver-child relationships were used to derive attachment behavior profiles. All of the children were enrolled in child care (72% in child care centers). Profile analysis was completed using five subscales of Attachment Q-Set items. Three profiles were replicated on randomly drawn subsamples, on center based and in-home based subsamples and on separate subsamples of toddler and preschool children. These profiles were labeled: difficult, avoiding and secure. Children in the secure profile had higher security scores than children in the difficult or avoiding profiles. Children in the avoiding profile appeared the most heterogeneous in attachment security. Children in the avoiding profile with high as opposed to low security scores were older and more likely to use the caregiver as a secure base, seek her for comfort and engage in positive negotiations. Observations conducted on the children with their caregivers provided external validity for the profiles. Children in the secure profile had the most adult involvement.     

Experiences of rural male caregivers of older adults with their informal support networks

More male caregivers are assuming primary caregiving roles for older adults with chronic health conditions. One of the main sources of support for many caregivers is the assistance that is provided by members of their informal support network. Little is known about the relationship between male caregivers and their informal support networks. This qualitative study examines the experience of male caregivers with their informal support networks, specifically looking at two phenomena: (1) Perceptions of the male caregivers about the willingness of their informal support networks to provide caregiving assistance and (2) Willingness of the male caregivers to ask their informal support networks for assistance. Twenty male caregivers were recruited across a rural Midwestern state. Each male caregiver engaged in two interviews that lasted between 60 and 120 minutes. Seven themes emerged from the data about the male caregivers experience with their informal support networks. Results from this study have implications for geriatric health professionals who work with male caregivers to obtain the necessary amount of caregiving assistance.     

Growing health disparities for persons who are aging with intellectual and developmental disabilities: the social work linchpin

Similar to the general population, adults with intellectual and developmental disabilities (IDD) are living into their 70s and beyond. Health care disparities have been well-documented for this vulnerable and underserved population. Social workers are often responsible for assessment, coordination of care, and negotiation of needed services for people with IDD. This article explores the challenges facing social workers in meeting the growing health and social needs of aging adults with IDD and their families. Trends in social work practice and gaps in education are discussed as they relate to addressing and reducing current health disparities.     

Rights to special services for people with developmental disabilities in Sweden: The risks and benefits of a legislative approach

Several major pieces of legislation in Sweden have been developed and enacted during the twentieth century to enable people with disabilities to live as normal a life as possible. The legal instrument is not supposed to depend on political economic trends. Important changes in the new Act on Special Services for Developmentally Disabled Persons from 1986 include qualitative demands and the right to self-determination for these individuals. The special services covered by the law are called social rights. The implementation of these rights is under the jurisdiction of politically appointed councils in counties or municipalities. The decisions made by these authorities can be appealed in administrative courts. Judicial review is supposed to be an instrument for the protection of citizens from the authorities responsible for services. In theory, at least, when one disabled person wins a case in court, the precedent should trickle down to all individuals in similar predicaments. But this does not always occur. One problem is that the law has no sanctions to force local authorities to follow the precedents or to execute court decisions. This article focuses on the Act and on the interplay between court cases and precedents and the decisions made by local authorities.     

Individualized education programmes and parental behaviours for children with disabilities: moderation effects of head start on children's developmental outcomes

This study examined associations among Head Start attendance, individualized education programmes (IEPs), parental behaviours and child outcomes in a sample of five‐hundred and seventy 3‐ to 4‐year‐old children with disabilities. Home language, number of disabilities and Head Start enrollment were associated with having an IEP. Parents of children with IEPs and those who participated in Head Start used more social services, while social support was more prevalent for parents of non‐Head Start children with IEPs. For all children, frequent parental book reading, greater number of books in the home and greater perceived social support among parents were associated with favourable cognitive and social–emotional outcomes. Greater social service use was adversely associated with reading scores only for non‐Head Start children. Findings highlight the need for inclusive IEP policies and Head Start programmes for parents regarding access to special education supports for children who demonstrate developmental concerns. Participation in Head Start may buffer negative effects of social service use on children's reading skill development, although more research is needed to uncover the specific mechanisms responsible for this association.     

Patterns of entry to community‐based services for families with children with developmental disabilities: implications for social work practice

The purpose of the present study was to understand, from parents' perspectives, the process of entry to community‐based services for children with developmental disabilities and to explore the relationship between patterns of entry and parent‐reported needs and priorities for service. Qualitative interviews were conducted with 43 mothers and 29 fathers of children with developmental disabilities approximately 6 months after the families entered community‐based childhood disability support services in Manitoba, Canada. Analysis of the coded interview data resulted in the identification of three process factors influential in the entry of families to community‐based support services: recognition of problems in child development, formal diagnosis of child disability and linkage between diagnostic services and the community‐based support system. Analysis of these processes identified four patterns of service entry associated with differing family needs for service: early entry, prompt entry, delayed entry and atypical entry. The results can be understood as a typology useful for social workers in the assessment of family needs and priorities at the point of entry to community‐based services.     

Quality of care: relationship between the perceptions of elderly home care users and their caregivers

The aim was to study the relationship between elderly home care users', and their caregivers', perceptions of the quality of care. The sample consisted of 151 matched elderly home care user-caregiver pairs in a Swedish municipality. The elderly home care users were interviewed and their caregivers filled in questionnaires using an established, theory-based instrument. Results showed that the elderly home care users evaluated most care components more favourably than their caregivers. On ratings of the various care components' subjective importance to the caretaker, the caregivers consistently scored higher than the elderly home care users. Within the subset of elderly home care users who received help at least twice a day, there were greater similarities between caregivers and caretakers. The results are related to comparable research and discussed in terms of caregivers' needs to legitimize their professional identity and actions.     

The impact of familism on future care planning for Korean parents caring for their children living with disabilities

ABSTRACT

Future care provision is a pervasive concern of parents with children living with disabilities. This article aims to provide an overview of the impact of familism on future care planning for Korean parents. For this qualitative study, data were collected using semi-structured interviews with parents (n = 9) and professionals (n = 9). Using conventional analysis, the study revealed there is strong emphasis on familial care with minimal governmental service provision and intervention; ultimately, this has a negative impact on the planning process. In support of the planning process taking its place as a standard phase of caring, a number of recommendations are made.     

Enhancing the capacity of kin caregivers and their families to meet the needs of children left behind

Based on qualitative research of the experiences of 23 kin caregivers and five school personnel, this article explores the role of informal kinship care in addressing the needs of school-age children left behind in rural China. The findings of this study suggest that kin caregivers' child-rearing capacity is limited in the rural context, and they are often overwhelmed by children's diverse and complex needs, particularly their emotional ones. In view of the huge population and their vulnerability, it is imperative for the state to take up its responsibilities and develop specific social work services and other support for children left behind and their families.     

Citizenship: locating people with learning disabilities

This article first identifies citizenship as an ambiguous con-cept with changing and contested meanings. Next it discusses the methodological commitment of a study conducted in 2001 exploring the conceptions of citizenship permeating learning disability services. The third section identifies four themes linked to the citizenship of disabled people: work, participa-tion, community and consumption. Lastly, the article looks to locate the citizenship of people with learning disability within the framework of governmentality. The analysis of interview material from the 2001 study suggested that there was no coherent idea of citizenship operating through the services. However, the analysis of governmentality provides a richer picture. The different discourses of citizenship, while produc-ing contradictory positions for individuals with learning disability, do nevertheless provide positions to be had when less than half a century ago no such positions existed. In this sense these discourses are productive.     

Quality of relationships between care recipients and their primary caregivers and its effect on caregivers' burden and satisfaction in Israel

Research on the impact of quality of relationships between primary caregivers and their care recipients on burden and satisfaction with caregiving is still rare. The sample included 335 dyads of primary caregivers and care recipients who were cognitively intact. Face-to-face interviews were conducted at the respondents' homes using structured questionnaires. No significant correlation between caregiving burden and caregiving satisfaction was found. Quality of relationship was the most significant variable in explaining both caregiving burden and caregiving satisfaction, yet different sets of additional variables were found to explain each of the outcomes. Interventions should address quality of relationships in order to reduce burden and increase caregiving satisfaction.     

Considerations in Care for Individuals with Intellectual Disability with Advanced Dementia

Abstract

A number of physical, psychosocial, or ethical issues related to the care of the individual with advanced dementia are reviewed and related to individuals with intellectual disabilities. The sources used include the published literature and illustrations drawn from personal observations. The author notes that through anticipation and early planning, advanced directives and service planning (which looks to adaptation of services and other care management interventions), can effectively impact care at the end. Areas that need to be addressed include technical information, including a review of and, as appropriate, adaptation of general advanced dementia resources, relief, rest, support, reassurance, receipt of on-going information, participation in planning, a sense of humor, and appreciation. Also noted, are the differences experienced because of the presence of paid staff as carers and residence outside of the family home. It is concluded that, although the goals of quality care is the same for all people with advanced dementia, the process by which to reach these goals often needs further consideration and adaptation for people with intellectual disabilities.     

Children with disabilities and disaster preparedness: a case study of Christchurch

An estimated seven million children with disabilities worldwide are affected by disasters annually. This significant figure emphasises the particular vulnerability of these children in facing natural hazards. However, their needs as well as their capacity and role in disaster risk reduction have largely been overlooked by researchers and policymakers. This paper draws on a case study in Christchurch to identify insights, realities, possibilities and obstacles in relation to the involvement in disaster preparedness of children with diverse disabilities. It reports on findings from focus group discussions and semi-structured interviews with children who have disabilities, their teachers and caregivers to explore children's preparedness and potential responses to a disaster. The findings indicate a considerable variation in how children with disabilities access available resources and perceive, face and cope with natural hazards. This paper shows their potential contribution to disaster preparedness and provides further suggestions for policy and practice.     

Strengths of caregivers raising a child with foetal alcohol spectrum disorder

Birth, foster and adoptive parents raising a child with foetal alcohol spectrum disorder know their children best and are well positioned to inform professionals how to help alcohol‐affected children. Telephone interviews with 32 parents were conducted to explore strengths of caregivers raising a child with foetal alcohol spectrum disorder, and responses analyzed using concept mapping methodology. Four themes emerged from 74 unique responses: ‘change parenting strategy for different children’, ‘use non‐verbal, sensory and physical strategies’, ‘stay patient and understanding’ and ‘locate and maintain external supports’. Results were compared and contrasted with the existing literature. Although many responses were consistent with the literature, strengths previously unreported by caregivers in the literature included cultural practices, communication, generalizability of skills, soothing music and use of a service dog.     

Factors affecting poverty among people with disabilities and antipoverty policies in South Korea

Previous studies analysed factors of poverty among people with disabilities without considering hierarchical or segmented structure by disability type or degree. Such approaches overlooked an auto-correlation problem among observations and overestimated the significance of the coefficient. In this study, a hierarchical generalised linear model (HGLM) was used to overcome these problems. This study found that sex, age, educational level, health condition, employment, being head of the household, area of residence, number of household members, and employment and work-life discrimination all had a significant effect on poverty among people with disabilities. The author suggests more detailed antipoverty policies.     

Depression and caregiver burden among rural elder caregivers

Family caregivers of older adults frequently experience feelings of burden and depression though they may not come to the attention to health and service providers until they are at a point of crisis. Through a simple screening tool, the Maine Primary Partners in Caring (MPPC) project identified individuals providing care to older adults through rural primary care practices, in order to provide upstream interventions before caregivers were in crisis. This paper describes a sample (n=62) of rural family caregivers identified through their physicians' offices. High levels of caregiver burden and depression were reported. Family support and knowledge of caregiver tasks predicted decreased caregiver burden and depression, while isolation predicted increased caregiver burden. Implications of these results for gerontological social workers are outlined.     

Audit of advertised housing and support vacancies for people with disabilities in Australia

The introduction of Australia’s National Disability Insurance Scheme (NDIS) has changed the way housing and support are delivered to Scheme participants. NDIS policy reform focuses on coordinated housing and support responses. These responses are guided by the Specialist Disability Accommodation (SDA) Rule, Framework and pricing and Supported Independent Living payments. To date, the National Disability Insurance Agency (NDIA) has only released limited data to understand SDA demand or inform market development. To understand changing housing and support approaches and the impact of NDIS housing policy on market responses, this research had three aims: (1) to examine the locations and characteristics of housing and support vacancies advertised for people with disability; (2) to investigate funding sources for, and providers of, these supported housing options; and (3) to examine the proportion and source of government, nonprofit and private sector funding for housing and support developments advertised. An audit was undertaken of all advertisements on the two main non‐government organisation Websites that list Australian supported housing vacancies. A total of 562 property adverts were reviewed in March 2019. Audit findings are considered in relation to the current NDIS policy context. Possible housing futures and market gaps for people with significant and permanent disability in Australia are discussed.