Reviewing Respite Services: some lessons from the literature

Although the community care reforms raised the profile of respite services for adults with learning disabilities, little is known about the character of respite provision in Britain. This lack of information is compounded by the way the literature about respite is dispersed across user groups and is often restricted to particular types of services or to specific localities. In order to highlight some of the key issues associated with respite, this paper draws on a wide range of literature. Regardless of differences in terms of the service user groups, common themes are identified which are relevant to service planning and provision for adults with learning disabilities. The paper discusses these themes and argues that a break with the traditional notion of respite as primarily a way to relieve carer burden is long overdue. Adopting the perspective of the primary service users affords the opportunity to re-think respite services.     

Family and friends as respite providers

Consumer-directed service options in home- and community- based care are increasingly available to adults with chronic conditions and cognitive impairments and to their family caregivers. Few studies, however, examine the experience of family caregivers who, when given a choice of providers of respite assistance (i.e., relief from the stress of providing constant care), prefer to hire family or friends rather than service providers. This study describes the in-home respite experience of family caregivers served by California's Caregiver Resource Centers "direct-pay" program who hire family or friends (n = 39) or service providers (n = 77) to provide in-home respite assistance. Findings revealed similarities between the two groups with few exceptions: caregivers who hired family or friends reported poorer physical health, were slightly more satisfied with the respite assistance, and received more hours of respite at a lower unit cost. These findings lend support to consumer-directed respite service options where family caregivers are given flexible alternatives that may act to remove barriers to respite service availability and use.     

Family and Friends as Respite Providers

Abstract

Consumer-directed service options in home- and community-based care are increasingly available to adults with chronic conditions and cognitive impairments and to their family caregivers. Few studies, however, examine the experience of family caregivers who, when given a choice of providers of respite assistance (i.e., relief from the stress of providing constant care), prefer to hire family or friends rather than service providers. This study describes the in-home respite experience of family caregivers served by California's Caregiver Resource Centers “direct-pay” program who hire family or friends (n = 39) or service providers (n = 77) to provide in-home respite assistance. Findings revealed similarities between the two groups with few exceptions: caregivers who hired family or friends reported poorer physical health, were slightly more satisfied with the respite assistance, and received more hours of respite at a lower unit cost. These findings lend support to consumer-directed respite service options where family caregivers are given flexible alternatives that may act to remove barriers to respite service availability and use.     

Children with disabilities in out-of-home care: Perspectives on organisational collaborations

Many contemporary support services for children and young people (CYP) in out-of-home-care have adopted a collaborative approach to service provision in order to best meet the complex needs of clients. The purpose of this study was to gain a better understanding of the perceptions of Evolve Behaviour Support Services (EBSS) frontline and managerial staff delivering services to CYP in out-of-home-care with disability and complex behaviours regarding interagency/stakeholder collaboration. Views about the number and nature of collaborative partnerships, factors which facilitate or hinder effective relationships and advantages (including unintended benefits) of collaboration were sought. Qualitative interviews with 21 participants highlighted issues around: (1) general and agency/stakeholder specific issues and barriers, and (2) benefits of collaboration. The collaborative approach to service provision was seen as greatly enhancing the effectiveness of EBSS' response and ability to meet the range of CYP's complex needs, as well as having benefits for carers and service providers. Nevertheless, difficulties with collaboration were also encountered. Frequently identified challenges included reduced stakeholder engagement, differences in professional backgrounds and practice frameworks, unequal initiation of contact and follow-up, organisational disparities, communication and information sharing problems, frequent stakeholder turnover and geographical barriers in rural/remote areas.     

Developing Family-Centered Models of Genetic Services

Abstract

This article reports the findings of an exploratory, multi-method study conducted for a state health authority to examine stakeholder perceptions of existing genetic services and service ideals using survey and focus group methodologies. A web-based survey of medical providers and allied health professionals (N = 567) examined the knowledge needed by service providers to deliver competent genetic care. A second web-based survey of programs (N = 15) viewed as potential partners in the delivery of genetic services was conducted to explore the potential for interagency coordination, the family-centered nature of these services, existing training, and general agency ideals and values. Focus groups were also conducted with 4 groups of families and 3 groups of service providers to explore their perceptions of current and ideal services. The strategies yielded important information around service needs, resource issues, barriers to service, psychological issues, and education and information needs related to the delivery of genetic services. Implications for professional education, especially social work education, are also covered.     

Service Provision for Men with Eating Issues in Australia: An Analysis of Organisations', Practitioners', and Men's Experiences

Abstract

Research was undertaken to explore issues surrounding service provision for men with eating issues in Australia. Qualitative and quantitative data were gathered from key stakeholders—organisations that provide treatment (n=15), practitioners that have worked with men with eating issues (n=10), and individual men with eating issues (n=5). Four key areas were explored: rates of access to services, the expression and development of eating issues in men, factors inhibiting or facilitating the recovery process, and recommendations to improve service provision. Results highlighted the need for increased awareness about men's eating issues within society generally, but for health professionals specifically, the need for better recognition of the expression of eating issues in men, and the expansion of existing services to be more “male friendly”. It is anticipated that service providers will benefit from these findings by identifying ways to reduce barriers and encourage help-seeking behaviour in men. Future research should seek to replicate and expand these findings using a larger sample size.     

Confronting Cruelty

Abstract

The present article reports on a study of the attitudes and behaviour of young people towards help-seeking during times of emotional distress and, in particular, when contemplating suicide. Twent- one young people aged between 16 and 24 years, as well as six parents and 14 youth service providers who lived in ‘Subcity’, a metropolitan community, were interviewed about their understandings of youth suicide and effective interventions. Nearly all the young people, service providers and parents identified a range of barriers that impede or prevent young people from asking for help when they need it most, including issues related to trust and confidentiality, parental support and fear, stigma and perceived loss of esteem. Implications for social work practice include an emphasis on developing parenting skills and community development related to education about suicide and the provision of appropriate support services.     

Necessary Steps in Designing a Successful Contract

Abstract

Parents with a history of serious mental illness are vulnerable in many ways and are therefore likely to be accessing services from a range of government and community agencies. The use of multiple services, sometimes with conflicting practice frameworks, can result in sub-optimal management of these families. This study surveyed 77 service providers from a range of government and non-government agencies targeting their views regarding parents with a serious mental illness (specified in this study as schizophrenia, bipolar disorder and psychotic depression). They were asked what they perceived were difficulties for this population, interventions required to meet the needs of this group and finally, barriers to effective service delivery. We found that service providers reported that current services were inadequate for these parents. Parent-based interventions were seen as being more beneficial than those targeting children. Lack of liaison between agencies and lack of coordinated service provision were seen as the greatest barrier to effective service delivery. The results highlight the need for policy planners and service providers to develop strategies to ensure effective coordination between services that work with this population.     

“It's a gap in awareness”: Exploring service provision for LGBTQ2S survivors of intimate partner violence in Ontario,Canada

ABSTRACT

Intimate partner violence (IPV) is a prevalent issue in all relationship configurations, including lesbian, gay, bisexual, transgender, queer, and two-spirit (LGBTQ2S) relationships. While the experiences of LGBTQ2S IPV survivors are understood, there are issues, needs, and challenges associated with service provision for them. Semi-structured interviews were conducted with a sample (N = 10) of professionals (e.g., counselors, shelter managers, program directors) affiliated with organizations that provide services for IPV survivors in Ontario, Canada. Participants answered questions pertaining to the inclusion of LGBTQ2S IPV survivors into their existing services, and what service provision should look like. Data was analyzed using a thematic analysis to uncover themes that reflected participants' responses. The data was organized into recommendations for service provision at three different levels: direct service provision, organizational transformation, and underlying principles and values. Findings reveal suggestions for service providers to consider modifying their current organizations, to adequately include LGBTQ2S IPV survivors.     

A Comparison of Out-of-home Care for Children and Young People in Australia and Sweden: Worlds Apart?

Abstract

In this paper we present a comparative analysis of out-of-home care in Australia and Sweden. We compare the age structure of the out-of-home care population and the types of out-of-home care services provided to children and young people in both countries. Our analysis reveals that in Australia the out-of-home care service system is focused mainly on children who are deemed to be abused or neglected within their families, while in Sweden the majority of the out-of-home care population are teenagers who cannot live with their families for emotional or behavioural reasons. These population differences intersect with variations in the forms of service provision in both countries, with a much greater reliance on home-based care in Australia than in Sweden, while there is more extensive use of residential care in Sweden. We envisage that this paper will demonstrate how the age structure of the out-of-home care population, though rarely considered in international comparative child welfare research, reveals much about the assumptions on which State intervention with children and young people is based. We intend that this analysis will assist social workers to better understand and address the gaps in the quality and comprehensiveness of out-of-home care service provision to children and young people in both countries.     

Chafee Educational and Training Voucher Programs: System Coordination in Rural New England

This paper explores service providers’ perspectives on a series of issues associated with systemic coordination in the implementation of the Chafee Educational and Training Voucher (ETV) Program in three relatively rural states. Findings derived from mail surveys (N = 105) and in-depth interviews (N = 17) with child welfare and educational service providers highlight challenges and innovations related to working with Chafee ETV eligible youth. Findings suggest that raising awareness of the Chafee ETV program’s provisions, improving access to concrete services, and facilitating collaboration among service providers may aid the transition to post secondary education for youth in out-of-home care.     

Sources of Double Disadvantage for People with Disabilities Living in Remote and Rural Areas of New South Wales, Australia

This study demonstrates how people with disabilities living in remote and rural areas experience double disadvantage in regard to receipt of services. They tend to experience similar disadvantages to other remote and rural dwellers (as compared with their urban counterparts), but these disadvantages are compounded by those associated with living in an environment which does not cater for the needs of people with disabilities. Findings display how geographical, physical, cultural, social and psychological factors within the external environment create disadvantages for the individual. The project involved data collection from people with disabilities, disability groups, service providers, families and carers through consultations and field trips. Major issues emerging from consultations were concerned with: transport and distance, isolation, the need for more consumer involvement, the nature of service provision (appropriateness, flexibility, co-ordination and location), the need for community and professional disability awareness education, protection of rights, carers and respite care, accommodation and housing, education, employment, information dissemination and access to specialised equipment. Comparison with overseas studies indicates that findings from this Australian study have applicability in other countries which have large remote and rural areas.     

“A lot of work needs to be done”—Service provider perspectives of mental health services available to Croatia- and Bosnia-born migrants

Research suggests that migrants have higher rates of mental health disorders but are less likely to access mental health services, which highlights both their vulnerability to mental illness and inequity in service provision. Despite being large and established culturally similar migrant cohorts in Australia, Croatians and Bosnians are invisible in mental health research. This qualitative study collected practice-based evidence from eight mental health service providers who have had direct professional contact with these communities, in order to understand how they engage with services, barriers to uptake and provide suggestions for service improvements. Thematic analysis was used to identify themes across interviews, which were then compared against Yang and Hwang's Migrant Mental Health Service Utilisation Model. The study identified unique factors specific to Croatia- and Bosnia-born migrants that impact how they engage with services, including mandated/prescribed services, religious resources, knowledge resources, referral pathways and procedures, and service provider competencies. This study will promote a better understanding of the limitations of the current mental health service offerings for Croatia- and Bosnia-born migrants, making it significant to practitioners, mental health organizations, policymakers and the general public.     

Housing problems experienced by recipients of child welfare services

This study uses data on the experiences of families involved with child welfare services to examine the nature of housing problems and needs among these families and whether housing status affects case outcomes. First, the article describes the housing difficulties faced by two distinct child welfare service populations: families receiving voluntary in-home services and families with children in court-ordered out-of-home care. Second, the study demonstrates the relationship between housing problems and the likelihood of family reunification for children in out-of-home care. The findings have implications for the delivery of child welfare services and the provision of housing assistance to low-income families with children.     

The Contribution of Voluntary Organizations to the Care of Children with Life-limiting Incurable Disorders and their Families

A national postal survey of voluntay organizations providing for children with life-limiting incurable disorders (n = 147) is described. The majority of organizations originated from the motivation of parents or care workers in response to deficiencies in service provision from other agencies. A wide variety of services were available from the organizations with over half providing an information service, emotional support and counselling, patient and family support and a telephone helpline. The provision of some services, for example respite care, was, hoverer, associated with the size of annual budgets. Publicity, referral and funding arrangements are also discussed. The role of voluntary organizations as partners in care with statutory agencies is discussed in the light of instability of funding arrangements and the use of health and social work staff as the main source of information about voluntary services to parents. Areas of further research in this field are suggested.     

'The more things change…': Barriers to community services utilisation in Queensland

Community services are central to the lives of many elderly Australians or Australians with disabilities if they are to remain in the community. Over the past two decades, significant advances have been made in policy and associated programs, significantly improving the standards of service delivery. This research reports on the perceptions of service providers in community services for people with disabilities in six communities in Queensland. It illustrates that significant barriers to service utilisation remain, despite reform. It suggests that continuous efforts to promote service access need to be built in at the program level.     

Facilitators and barriers to employment: the perspectives of people with psychiatric disabilities and employment service providers

This study examined the perspectives of people with psychiatric disabilities and employment service providers regarding factors that most directly help or hinder consumer efforts to obtain and maintain employment. Forty-four adults with serious mental illness (SMI) (consumers) and 30 providers participated in 12 focus groups across Massachusetts. We began both consumer and provider groups by posing two broad questions: 1) what factors most help people with SMI get and keep jobs (facilitators), and 2) what factors most prevent people with SMI from getting and keeping jobs (barriers)? Data were analyzed qualitatively and both person and environmental factors were highlighted. Among facilitators, participants agreed that quality consumer-provider relationships and individualized employment services are most instrumental in helping consumers achieve employment goals. Participants identified a range of environmental barriers, including issues related to the service system, entitlement programs, non-human resources, and social stigma. Implications for services are discussed.     

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.     

‘Like a fish in a bowl’: parents' perceptions of child protection services

This research involved a small qualitative study focused on family experiences of child protection practice, commissioned as part of a Best Value review of child protection services in a large rural Midlands local authority. Qualitative interviews were undertaken with 18 families who had received child protection services. Findings were mixed in relation to perceived helpfulness of the processes of child protection interventions, with 50% of families reporting some positive bene?t and 22% reporting that such interventions had caused them harm. From the families' perspectives, factors that are associated with positive and negative outcomes are outlined. These include the availability of preventive services, crisis support, respite care, actual provision of services speci?ed in protection plans and an engaging style of practitioners. Conclusions emphasize the value of research focused on family perceptions of services as an important contribution to quality control and service development in child protection service provision. Copyright © 2004 John Wiley & Sons, Ltd.     

Contesting disabling conditions of life in the Global South: disability activists’ and service providers’ experiences in Guyana

This article addresses an important gap in our understanding of issues of impairment and disability, namely challenges facing disabled activists and service providers in the majority world context of the developing nation of Guyana. The article argues that developing a southern standpoint on impairment, disability, disability activism and service provision requires a reframing of disability issues as matters of distributive justice and not only human rights. Challenges facing disability activists and service providers in Guyana included trying to combat internalized ableism, financial and cultural barriers to political engagement and visibility, tensions in claiming or rejecting disabled identities and difficulties in accessing foreign aid funding for disability initiatives. The article concludes by stressing the importance of rethinking how we do disability studies so that it allows critical analysis of the dynamics of a global capitalist corporeal class order in the context of the majority world.