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Objective: Parenting an autistic child can affect a family's well-being. Finding resources is critical. This pilot study looked at respite's impact on parental stress, anxiety, and depression in military families and demographic factors associated with presence of respite care. Method: Participants completed three surveys on anonymous basis, including two standardized surveys measuring parental stress and anxiety/depression. Data analysis used Chi-square test and regression analysis. Results: Parents receiving respite reported less stress and anxiety/depression. Respite utilization was associated with absence of comorbid conditions in child and other variables. Predictor variables for parental stress and anxiety/depression included presence of comorbid conditions in child. Conclusion: Respite care may be linked to lower parental stress, anxiety, and depression, but more study is needed.

Most youths use Information and Communication Technology (ICT) for socialising, but there is a discussion about whether using ICT promotes social participation for youths with intellectual disabilities (IDs). Employing the concepts of social participation and self-determination together with the youths' perspectives, as conveyed by staff, we examine how social participation might be promoted for youths with intellectual disabilities in institutional settings in Sweden. The findings revealed three overarching themes. The first theme, "Developing skills, self-determination and becoming less reliant," illustrates the basic use of ICT. The second theme, "Sharing events, socialising and participating with others," draws attention to how youths take technology a step further to interact with others. The third theme, "Resources and attitudes," concerns the youths' need and desires for adequate support and equipment and the mindset of surrounding communities concerning ICT. Our conclusion is that ICT has the potential to promote social participation if the youths have access to personalised equipment and supportive staff.

Background: Parenting children and young adults with intellectual disabilities, including individuals with fragile X syndrome and Down syndrome, is challenging, joyful, and complicated. Exploring how parents talk about their children, and the quality of the parent/child relationship can provide insight into the home environment and interactional patterns of the family. Method: Expressed emotion (EE) is a measurement of a family's emotional climate based on a parent or caregiver's report of warmth, emotional overinvolvement, hostility, and criticism. The purpose of this study was to describe EE for a sample of parents of individuals with intellectual disabilities and to determine any differences in EE amongst individuals within subgroups. Based on previous research about fragile X syndrome and family systems, we hypothesized that there would be significant differences between the disability groups (higher EE in families with children/young adults with fragile X syndrome). Results: Results showed relatively high proportions of EE across groups of individuals with intellectual disabilities, however, there were no significant differences between the subgroups. Null findings suggest that differences in EE may not relate directly to a child's specific genetic condition. Rather, increased EE in caregiver populations may simply reflect well-documented stressors related to stigma, caregiver burden, and limited community supports. Critical statements were infrequent, however, over half of the participants reported dissatisfaction with their situation, and many were categorized as having emotional overinvolvement, as measured by frequent statements of intense worry and self-sacrifice. Conclusion: Findings point to potential utility in family-level interventions focused on providing structured caregiver therapy to manage excessive worry and grief related to a diagnosis of intellectual disability, and respite care to encourage caregiver independence and pursuit of personal care.

Background: Reducing hospital admissions for people with a learning disability is a key objective of national guidelines. However, there are currently little available data which indicate factors which might reduce the risk of hospital admission. Using a cohort of people at risk of hospital admission, this research sought to explore the association between access to emergency respite and hospital admission. Methods: This study accessed data from 76 clients who were based within Pennine Care NHS Foundation Trust, who were on the Dynamic Risk Register due to assessed risk of possible hospital admission. After the employment of inclusion criteria, data from 51 clients were used in the analysis. The study accessed data from clinical records and any professionals meeting minutes (e.g., care and treatment review) from a 12-month period; information was collected pertaining to participants' diagnoses and the treatments and interventions that they had received. Findings: Whilst controlling for other interventions, a significant association between hospital admission and access to emergency respite was found, with emergency respite significantly reducing the odds of hospital admission (OR 0.05, CI 0 to 0.36, p = 0.001). Not having access to emergency respite increased the odds of hospital admission by 20.56 times. Conclusion: In the study catchment area, emergency respite appears to be significantly associated with a reduction in hospital admission, independent of other interventions offered. Further research is necessary to explore if this study's findings are replicable in other areas. This study has implications for the development of emergency respite services in local areas.

Autism services in Qatar are expanding rapidly, but focus predominantly on young children. The shortage of qualified autism providers and minimal opportunities for autistic youth to participate in school, work, and community have led to a growing population of autistic youth transitioning to adulthood with substantial unmet needs for behavioral support and instruction in critical life skills. Our objective was to identify the needs and preferences for respite care for autistic adolescents and young adults in Qatar utilizing family and stakeholder input. Researchers from the United States collaborated with researchers and community leaders from Qatar to evaluate perspectives regarding respite care with families of autistic people (n = 11) and providers/community stakeholders (n = 20) through surveys and focus groups. Four main themes emerged including (1) a need for trust and reliability of individuals and of systems to support autistic adults, (2) prioritizing quality of life for autistic individuals and their families, (3) seeking meaningful inclusion, and (4) challenges stemming from service delivery systems. Families in Qatar endorsed clear interest in respite care services for young adults with autism, regardless of their child's age. This study highlights the value of including both provider expertise and family concerns in developing new services for an under-served community.

Community dance has been used as an arts-based approach in healthcare, key for expression in populations who may not typically have access to dance. This study sought to conduct an empirical exploration of family caregivers' perceived psychosocial wellbeing when regularly participating in community dance classes. Community dance can be defined as an activity that can enable creative, expressive, and inclusive experiences for those that take part, and, for this study, both caregivers and people living with dementia were able to participate in community dance classes of this nature. Using a qualitative research design, three family caregivers for people living with dementia diagnoses participated in semi-structured interviews. Using Interpretative Phenomenological Analysis, the findings suggest that the spousal and adult-child caregivers perceive emotional and psychological benefits from dancing. The caregivers in this study emphasised that their community dance participation provided them with respite, reaffirmed relationship connectivity between caregiver and care-receiver, social engagement, and a rediscovered sense of identity. Findings offer insight into the appropriateness of dance as a method for alleviating potential psychological and social stressors experienced by family caregivers, advocating for greater availability of community dance classes for those experiencing dementia and their caregivers.

This parallel group randomized controlled trial tested effectiveness of the Let's Talk About Pain training on respite workers' (RW) pain-related knowledge and feasibility-confidence-skill ratings using between-group and within-group analyses. Fourteen children's respite organizations were randomized to pain or control training. Participants (n[subscript intervention] = 66; n[subscript control] = 92) underwent a 3--3.5 hour training and completed measures at pre-, post-, and 4--6 week follow-up. Intention-to-treat (n[subscript intervention] = 65; n[subscript control] = 92) and per-protocol (n[subscript intervention] = 26--38; n[subscript control] = 40--57) analyses were conducted. Pain training participants demonstrated significantly higher pain knowledge and feasibility-confidence-skill ratings post-follow-up versus control group and significant increases in knowledge from pre-post. Significant gains were maintained from post-follow-up. Results represent a promising step towards enhancing pain-related care for children with IDD. [For Part Two, see EJ1304421.]

Within a parallel-group randomized control trial, pain training's impact on Respite Workers' (RW) care approaches and training evaluations was explored. RW (n = 158) from 14 organizations received pain or control training following randomization. Researchers were blind until randomization; allocations were not shared explicitly with organizations/participants. Participants completed a strategy use questionnaire immediately before and an evaluation immediately after training completion. Four-to-6 weeks later, participants completed the strategy use questionnaire and semistructured focus groups. No differences in pain approaches were noted in strategy use questionnaires. Per focus groups, both groups acquired a "knowing" about pain and applied pain-related care approaches in similarly. Pain training participants identified need for "growing and strengthening" pain knowledge. Training endorsements were favorable. RW pain training has value and may impact practice. [For Part One, see EJ1304420.]

Background: Respite care has traditionally been conceptualised as a short residential break which allows families a break from caring responsibilities. In recent years, alternative respite services have been developed which promote greater social integration and normalisation for people with intellectual and other disabilities. Specific aim: The present study sought to explore the views of service managers and families on the definitions, aims, outcomes and general experiences of these programmes among a sample of adults with intellectual disabilities (ID) using a range of alternative respite services. Method: Participants were managers of respite services for people with ID (n = 6) and family members (predominantly parents, n = 32) of adults receiving respite services from these organisations. All participants were provided with appropriate information on the study and gave consent. Semi-structured interviews were used to explore participants' perspectives on alternative respite provision for adults with ID. Data were analysed using thematic analysis, with multiple analysts involved to allow for reflection on the interpretation of data. Findings: Managers and families showed diversity in the conceptualisations of respite services, with themes highlighting the importance of the break for both people with ID and families, as well as a clear focus on the needs of and developmental outcomes for the person with ID. As such respite was viewed as both a model of service and an outcome for families and individuals with ID. These differing views appeared to have implications for views on who was the target beneficiary of respite. Discussion: The present study reflects alternative respite as a diverse experience for people with ID, their family members and the service providers supporting them. Nevertheless, views were generally positive. Further consideration of the nature of respite services beyond the traditional conceptualisation is warranted.

Background: Respite supports are highly valued by persons with disabilities and their families/carers. In Ireland, there has been regular commentary in relation to a lack of respite services, with users and other stakeholders reporting limited access, inequity of provision, and long waiting lists for support. Materials and Methods: Much of the research on respite focuses on the views of carers, with little account of the experiences of persons with disabilities. This study examines the perspectives of twenty-eight adults with intellectual disabilities; most are regular users of traditional and/or alternative respite services. Information was gathered through individual interviews and focus groups. Findings: Participants identified nine key elements of a person-centred respite service; fun, time and space, choice, independence, friendships, compatible groupings, positive relationships with staff, flexible supports, and user involvement in service design and delivery. Conclusions: Person-centred supports should enable individuals to achieve maximum well-being and flourish in all aspects of their lives. This study found that at a personal level, respite services and the interactions that occur within them are person-centred in that they support the individual to do the things they want to do, make everyday choices, try new activities, develop positive relationships, and have a good quality of life. However, at the level of service planning and decision-making, there is less evidence of a person-centred approach. Participants reported having little involvement in the design and delivery of respite services at local or national level. The development of a respite policy in Ireland, that considers the views of respite service users, would be welcome.

Autism is associated with a range of costs. This paper reviews the literature on estimating the economic costs of autism spectrum disorder (ASD). More or less 50 papers covering multiple countries (US, UK, Australia, Canada, Sweden, the Netherlands, etc.) were analysed. Six types of costs are discussed in depth: (i) medical and healthcare service costs, (ii) therapeutic costs, (iii) (special) education costs, (iv) costs of production loss for adults with ASD, (v) costs of informal care and lost productivity for family/caregivers, and (vi) costs of accommodation, respite care, and out-of-pocket expenses. A general finding is that individuals with ASD and families with children with ASD have higher costs. Education costs appear to be a major cost component for parents with children with ASD.

Background: Respite care is an essential support for people with intellectual disabilities and their families; however, there is limited evidence examining different models of respite care. The present research examined quality of life among adults with intellectual disabilities using three different models of respite services in Ireland. Method: A quasi-experimental research method was adopted, which sought to determine differences in quality of life across the three respite care groups using two measures, (1) a self-reported quality of life scale and (2) a quality of life questionnaire filled out by a keyworker. Participants were people with mild/moderate intellectual disabilities (n = 82) and their keyworkers (n = 81). Results: Three distinct models of respite services were assessed: (a) Traditional- Residential respite; (b) Personalised Residential respite, and (c) Personalised Non-Residential respite. No differences emerged between the groups on self-reported quality of life; however, the groups differed on a proxy measure of quality of life with respect to Rights, emotional well-being, personal development and interpersonal relationships. Conclusion: The current data offer an initial exploration of self- and proxy-reported quality of life among persons with intellectual disabilities in receipt of novel models of respite care in Ireland.

Aims: Life expectancy for both sexes in Australia exceeds 80 years, with individuals with intellectual disability also increasingly living into older age. This research aimed to comparatively examine perceptions of staff supporting either older adults or age peers with lifelong intellectual disability. Methods: This project asked 420 medical, health, and support workers about training adequacy, health services access, and trigger points for premature institutionalisation. This paper is based on a subsample of 196 respondents who provided quantitative and qualitative responses. Results: There was considerable variation in confidence in supporting ageing individuals, while only 23.7% of doctors reported their training was adequate to support adults ageing with intellectual disability. A lack of services and poor carer health were identified as triggers for premature institutionalisation. Conclusions: The study revealed key differences in staff perceptions of support provision and training adequacy when comparing ageing individuals with intellectual disability to the general ageing population.

In this study, a family support program was carried out for primary caregivers of children with disabilities. The program included respite care, recreation programs, counseling, and social support coordination based on individual needs of each family. In order to verify the intervention effects, parenting stress and family quality of life were measured before and after the intervention. Twenty-one primary caregivers who have children with disabilities attending a special school located in Buchon, Korea participated in the study. The experimental group A (seven caregivers) was provided with respite care services only whereas the experimental group B (seven caregivers) was provided with a multifaceted family support program including recreational programs, counseling, and social support coordination in addition to respite care services. No support was provided to the control group (seven caregivers). The results showed a significant difference in the change of family quality of life between the experimental group B and the control group. However, there was no significant difference among three groups in parenting stress. Discussion about the results and implications for future research is presented. (Contains 14 tables.)

The nation's child protection system (CPS) has historically focused on preventing maltreatment in high-risk families, whose children have already been maltreated. But, as Jane Waldfogel explains, it has also begun developing prevention procedures for children at lower risk--those who are referred to CPS but whose cases do not meet the criteria for ongoing services. Preventive services delivered by CPS to high-risk families, says Waldfogel, typically include case management and supervision. The families may also receive one or more other preventive services, including individual and family counseling, respite care, parenting education, housing assistance, substance abuse treatment, child care, and home visits. Researchers generally find little evidence, however, that these services reduce the risk of subsequent maltreatment, although there is some promising evidence on the role of child care. Many families receive few services beyond periodic visits by usually overburdened caseworkers, and the services they do receive are often poor in quality. Preventive services for lower-risk families often focus on increasing parents' understanding of the developmental stages of childhood and on improving their child-rearing competencies. The evidence base on the effectiveness of these services remains thin. Most research focuses on home-visiting and parent education programs. Studies of home visiting have provided some promising evidence. Little is as yet known about the effects of parent education. Waldfogel concludes that researchers have much more to learn about what services CPS agencies should expand to do a better job of preventing maltreatment. Some families, especially those with mental health, substance abuse, and domestic violence problems, are at especially high risk, which suggests that more effective treatment services for such parents could help. Very young children, too, are at high risk, suggesting a potentially important role for child care--one area where the evidence base is reasonably strong in pointing to a potential preventive role. Although preventive services for the lower-risk cases not open for services with CPS are much more widespread today than in the past, analysts must explore what CPS agencies can do in this area too to ensure that they are delivering effective services. (Contains 1 figure, 1 table and 40 endnotes.)

Family members of children with disabilities have become more involved in their children's care and have adopted the role of primary caregiver. Due to the varying degrees of the condition, children with cerebral palsy (CP) often require greater involvement from their caregivers. Fifteen caregivers for children with CP residing in rural communities of the Western Cape, South Africa, were interviewed to explore the barriers and facilitators that they encountered. Thematic analysis revealed that some progress has been made in terms of service provision to caregivers from previously disadvantaged communities. However, a lot more needs to be done to help caregivers with children with CP. Social support, increased public awareness of the causes of disability, financial support by the government and access to disability friendly services, such as respite care, special education and transport-related services, have been identified as essential. It is important to take this into consideration when designing future interventions in order to provide caregivers with support and services necessary to make an impact.

Globally, families who care for a child or adolescent with disabilities have been found to experience high levels of maternal ill health, stress, depression and family breakdown. In extreme cases, children and adolescents may have to move away from their family to a permanent residential placement. A potentially more appropriate and cost-effective approach is the provision of family support services; predominantly these have taken the form of "short break schemes," whereby temporary (respite) care is issued to provide short-term relief for the family (e.g. regular afternoon care). This research reported the impact of a short break scheme from the perspective of the service users and their parents by conducting interviews with adolescents with disabilities and quantitative questionnaires with the parents, following a summer short break scheme.

Respite aims to alleviate the stress and burden of caring for someone with an intellectual disability and/or autism. Respite can take place in a number of different ways, but most commonly occurs in a residential setting. Based on survey and interview data with carers (CAs), service users and stakeholders (STs) in a northern city in England, this article explores some of the perceived or actual barriers to availing "non-residential" respite. A number of barriers to non-residential respite are identified. Residential respite appears to be the default conceptualization of "respite" for carers, service users and stakeholders. Persuading carers, service users and stakeholders to give up the familiarity and safety of residential respite in favour of a non-residential alternative will be challenging unless those involved are more informed. Limitations and directions for future research are suggested.

This longitudinal study inventoried the types of services accessed by a sample of Alberta families of children with or at-risk for disabilities. We explored the role of severity of disability, parental stress, and family income on services accessed. With few exceptions, services were accessed more frequently as the children's lives progressed but higher income families accessed more services than lower income families, even though the latter families had children with more severe disabilities. Difficulties accessing services and lack of services were reported by lower income families. The authors conclude that integrated services are necessary to improve access for those families most in need. (Contains 4 figures.)

Parents of children with disabilities are at risk for high stress and low marital quality; therefore, this study surveyed couples (n = 112) of children with Down syndrome (n = 120), assessing whether respite hours, stress, and uplifts were related to marital quality. Structural equation modeling indicated that respite hours were negatively related to wife/husband stress, which was in turn negatively related to wife/husband marital quality. Also, wife uplifts were positively related to both wife and husband marital quality. Husband uplifts were positively related to husband marital quality. Therefore, it is important that respite care is provided and accessible to parents of children with Down syndrome.