The impacts of short break provision on disabled children and families: an international literature review

For over 30 years, short breaks have been part of the landscape of support provision for families with a disabled child. Historically, the term ‘respite care’ has been used in much of the research literature concerning short breaks for families with a disabled child. However, ‘short breaks’ has become the preferred term, partly due to the negative connotations of family carers requiring ‘respite’ from their children, and partly because short breaks now encompass a much wider range of supports than out-of-home placement in specialist residential facilities (Cramer and Carlin, 2008). As such, the term ‘short breaks’ will be used throughout this review, with the exception of direct quotes from research studies where the term ‘respite’ is used by study participants or study authors

Increasing Quality of Life: Providing Education and Resources for Parents of Children with Autism Spectrum Disorder

This 14-week capstone project aimed to develop and implement meaningful modifications to an early intensive behavioral intervention center from an occupational therapy (OT) perspective. An evidence-based evaluation of the existing program was conducted, and it was identified that parents of children 18 months to 6 years old with autism lacked the awareness of available resources to support their overall quality of life. A new process was developed and implemented for parents to get connected with resources that met their current needs, resulting in a total of 18 different categories of resources. Parents also received education regarding caregiver burnout and developmental milestones in the form of newsletters and blog posts. The program resulted in decreased depression and anxiety, improved satisfaction with life, improved felt control, and improved sense of involvement and support from the community for parents. Board certified behavior analysts (BCBAs) received training on parent resources and education for sustainability. BCBAs also received education on OT’s scope of practice to increase future collaborations. Results showed that the program improved BCBAs confidence levels and satisfaction levels regarding the available resources for parents. Overall, this capstone project helped spread awareness on how OT can benefit parents of children with autism and BCBAs

Transition from school to adult services for young people with severe or profound intellectual disability:A systematic review utilizing framework synthesis

Background The transition to adulthood has been described as a difficult time in the lives of young people with intellectual disability. There has been little emphasis on young people with severe or profound intellectual disability specifically, even though their pathways may differ, due to greater support needs across the life course. Methods A systematic review was conducted utilising Bronfenbrenner's ecological model to inform framework analysis to synthesise qualitative findings. Results Taking an ecological perspective proved valuable. The transition process was described as stressful and barriers were identified across the ecological levels. Parents accounted for the majority of participants in studies, and the needs of young people and their parents emerged as highly interdependent. Conclusion Themes reflect the complex nature of the question what adulthood should look like for individuals with severe or profound intellectual disability. There is a lack of involvement of multiple stakeholders and young people themselves within studies

The Relationships Among Adaptive Behaviors of Children with Autism Spectrum Disorder, Their Family Support Networks, Parental Stress, and Parental Coping

Purpose: The purpose of this study was to examine the adaptive behaviors of children with Autism Spectrum Disorder (ASD), their family support networks, parental stress, and parental coping and the relationships among these variables. Background: Autism is the fastest growing diagnosed developmental disorder. When parents receive a diagnosis of autism for their child, mothers and fathers are affected differently. The costs to families of children with autism are personal, social, and affect family finances and day to day living. Parents of a child with autism are at high risk for increased stress levels. The child’s socially unacceptable behaviors and communication problems contribute to parental stress. Available and accessible support services for children with autism, their caregivers, and families are often inadequate to address the increasing numbers of children being diagnosed with autism. Methods: A descriptive, correlational, cross-sectional study was conducted with a purposive sample of 75 parents/primary caregivers of children with ASD. Parents provided information about the adaptive behaviors of their child with autism, family support networks, parental stress, and parental coping. Pearson product-moment correlation was used to identify the relationships between the variables. Multiple regression analysis was performed to identify which of the independent variables better predicted parental coping patterns. Findings and Conclusion: The adaptive behaviors of children with autism were negatively correlated with parental behaviors which focused on continuing to seek and use social support, self-respect, and emotional strength. Parents’ views of the support their family received were positively correlated with parental behaviors that concentrated on family adjustment, teamwork, and a positive meaning of the situation. A trend toward significance was found between adaptive behaviors of the child with autism and paternal stress. These results bring new challenges and thoughts about how the children with autism and their families can be assisted. Parents who are coping with the added stresses in their lives need support that addresses the abilities of their child with autism, their own patterns of coping, and the resources available to their family

Seeing the wood for the trees. Carer related research and knowledge: A scoping review

This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference

Reinvigorating and redesigning early intervention in psychosis services for young people in Auckland

RESUMO: Auckland tem sido pioneira na implementação de modelos de Intervenção Precoce em Psicose. No entanto, esta organização do serviço não mudou nos últimos 19 anos. Segundo os dados obtidos da utilização do serviço, no período de 1996 -2012 foram atendidos 997 doentes, que tinham um número médio de 89 contactos (IQR: 36-184), com uma duração média de 62 horas de contactos (IQR: 24-136). Estes doentes passaram um número médio de 338 dias (IQR: 93-757) em contacto com o programa. 517 doentes (52%) não necessitaram de internamento no hospital, e os que foram internados, ficaram uma mediana de 124 dias no hospital (IQR: 40-380). Os doentes asiáticos tiveram um aumento de 50% de probabilidade de serem internados no hospital. Este relatório inclui 15 recomendações para orientar as reformas para o serviço e, nomeadamente, delinear a importância de uma visão organizacional e dos seus componentes-chave. As recomendações incluem o reforço da gestão e da liderança numa estrutura de equipe mais integrada, com recursos dedicados a melhorar a consciencialização da comunidade, a educação e deteção precoce, bem como a capacidade de receber referenciações diretas. Os Indicadores Chave de Desempenho devem ser estabelecidos, mas os Exames de Estado Mental em risco, devem ser removidos. Auckland deve manter a faixa etária alvo atual. A duração do serviço deve ser aumentada para um mínimo de três anos, com a opção de aumentá-la para cinco anos. A proporção de gestor de cuidados para os doentes deve ser preconizada em 1:15, enquanto o pessoal de apoio não-clínico deve ser aumentado. Os psiquiatras devem ter uma carga de trabalho de cerca de 80 doentes por equivalente de tempo completo. Um serviço local de prestação de cuidados deve ser desenvolvido com, nomeadamente, intervenções culturais para responder às necessidades da população multicultural de Auckland. A capacidade de investigação deve ser incorporada no Serviço de Intervenção Precoce em Psicoses. Qualquer alteração deverá envolver contacto com todas as partes interessadas, e a Administração Regional de Saúde deve comprometer-se em tempo, recursos humanos e políticos para apoiar e facilitar a mudança do sistema, investindo de forma significativa para melhor servir a comunidade Auckland.----------------------------------- ABSTRACT: Auckland has been pioneering in the adoption of Early Intervention in Psychosis models but the design of the service has not changed in 19 years. In service utilisation data from 997 patients seen from 1996 -2012, patients had a median number of 89 contacts (IQR: 36-184), with a median duration of 62 hours of contact (IQR: 24-136). Patients spent a median number of 338 days (IQR: 93-757) in contact with the program. 517 patients (52%) did not require admission to hospital, and those who did spent a median of 124 days in hospital (IQR: 40-380). Asian patients had a 50% increased chance of being admitted to hospital. This report includes 15 recommendations to guide reforms to the service, including outlining the importance of vision and key components. It recommends strengthened managerial leadership and a more integrated team structure with dedicated resources for improved community awareness, education and early detection as well as the capacity to take direct referrals. Key Performance Indicators (KPIs) should be established but At Risk Mental States should be excluded. Auckland should maintain the current target age range. The duration of service should be increased to a minimum of three years, with the option to extend this to five years. The ratio of care co-ordinator to patients should be capped at 1:15 whilst non-clinical supporting staff should be increased. Psychiatrists should have a caseload of about 80 per FTE. A local Service Delivery framework should be developed, as should cultural interventions to meet the needs of the multicultural population of Auckland. Research capacity should be incorporated into the fabric of Early Intervention in Psychosis Services. Any changes should involve consultation with all stakeholders, and the DHB should commit to investing time, human and political resources to support and facilitate meaningful system change to best serve the Auckland community

Service and support requirements of people with younger onset dementia and their families final report, August, 2012

In 2011, Alzheimer’s Australia NSW (AlzNSW) was engaged by Ageing, Disability and Home Care (ADHC) to research the service and support requirements of people with younger onset dementia and their families in New South Wales. AlzNSW partnered with the Social Policy Research Centre (SPRC) and UnitingCare Ageing to conduct the research. This report outlines the methods, findings and policy implications of the research. Dementia is a major cause of disability amongst older people and some younger people aged under 65 years, causing ‘progressive change and degeneration in cognitive mental functions, such as memory, language, rational thinking and social skills, as well as behaviour, emotion and personality’ (Mocellin, Scholes and Velakoulis, 2008:1). Younger onset dementia is defined as dementia which occurs before the age of 65 years and under 50 years for Aboriginal people.   *Other authors - Ariella Meltzer, Karen R Fisher, Denise Thompson and Robyn Fain

"What Parents Want": A Needs Assessment in Dublin South City

This report presents the findings on research on family-related services in Dublin with a specific focus on Dublin South City (DSC). The focus of the research concerns awareness of, perceived need for as well as reported usage of these services. For this report parents were interviewed in focus groups in Dublin South City and a city wide online survey was conducted