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This study compared the relationships among respite care, uplifts, stress, and marital quality across two different groups of caregivers—102 heterosexual married couples with children with autism spectrum disorder (ASD) and 111 heterosexual married couples with children with Down syndrome (DS). This study also investigated if the effect of respite care on stress and marital quality varied as a function of the amount of uplifts these caregivers experienced. Participants completed self-report surveys. Three two-group Actor Partner Interdependence Models were estimated to calculate the direct, indirect, and partner-effects among these variables. Respite care was not related to stress for either groups of parents, but it was positively associated with husband and wife marital quality for parents of children with ASD. Uplifts were negatively associated with stress and positively associated with marital quality for both husbands and wives with children with ASD, but only for wives with children with DS. Furthermore, when husbands and wives with children with ASD reported more weekly respite hours and daily uplifts, wives tended to report more daily stress. However, as husbands and wives reported less weekly respite care and more daily uplifts, wives tended to report less daily stress. Implications for these findings are discussed.
Parents of a child with a disability are at greater risk than other couples for having higher stress, adjustment difficulties, and lower marital quality. Respite care has been shown to reduce stress in parents of children with disabilities. This study focused on parents who have a child with Down syndrome and their reported marital quality and respite care received. One hundred and twelve couples, each consisting of a mother and a father who lived with their child with Down syndrome, completed questionnaires included the Revised Dyadic Adjustment Scale, Experience in Close Relationships Questionnaire, Daily Hassles and Uplifts Scale, and a respite questionnaire. Results were mixed. Respite care did not predict marital quality for either wives or husbands. However, respite hours was related to wife stress, which was in turn related to wife marital quality. Respite hours was also related to husband stress, which was related to husband marital quality. In addition, wife uplifts was directly related to wife marital quality and to husband marital quality. Husband uplifts was related to husband marital quality. While not directly predicting marital quality, respite care was indirectly related to increases in marital quality through stress. Therefore, it is important that respite care be accessible and provided to parents who have a child with Down syndrome. Recommendations for policy makers and researchers are offered.
Autism spectrum disorder (ASD) holds potential for significantly impacting the primary caregiver and family, as well as the child with ASD. In particular, sleep problems occur frequently among children with ASD, and their poor sleep may negatively affect that of their caregivers. Health-related quality of life (HRQoL) and Family Quality of Life (FQoL) are salient indices of caregiver and family well-being. This pilot study explored associations between family caregiver sleep problems and caregiver sense of coherence (SOC) or coping on HRQoL and FQoL. Additionally, this study examined relationships between child sleep and behavior problems on caregiver sleep and well-being. Sixty-two family caregivers of children with ASD (M =7.61, range: 6-11 years old) participated in this survey study. Participants provided demographic information and completed measures of HRQoL, FQoL, caregiver sleep, SOC, parental stress, child sleep, and child behavior. Caregivers with longer sleep duration reported better mental health and better FQol. Caregivers who reported insomnia symptoms, non-restorative sleep, and insufficient sleep were more likely to report poorer mental health than caregivers who did not report these sleep disorder symptoms. A stronger caregiver SOC was associated with lower caregiver stress, better mental health, and better FQoL. Significant relationships were found between shorter caregiver sleep duration or sleep disorder symptoms (i.e., difficulty staying asleep, early morning awakening, insufficient sleep) and greater child sleep problems. Moreover, short sleep duration or insufficient sleep among caregivers was significantly associated with greater parenting stress. Notably, biological parents with Restless Legs Syndrome (RLS) had children with more restless sleep and higher rates of some behavior problems. There are a number of potential connections between sleep problems of children with ASD and sleep problems of their caregivers that are likely rooted in genetic, environmental, socio-economic, and behavioral factors. Interventions for sleep problems must address the context of the family and consider that sleep problems may be common to the caregiver and the child. The results of this study support findings from many prior studies and point to salient variables for future research and interventions to promote healthy caregiver sleep.
Building a vibrant and joyful marriage is always a challenge. When you add the stresses inherent in parenting children with disabilities, it becomes both more difficult and more critical. Once on the brink of divorce, Kristin and Todd Evans uncovered the unique set of skills critical for growing a fulfilling relationship amid the extraordinary challenges of caring for their two children with special needs. Now they are sharing their hard-won discoveries and inspiring marriage story with you. Weaving together insights from Scripture, research, and clinical and personal experience, Kristin and Todd offer you the practical relationship tools you need to save, strengthen, and enjoy your marriage. They help you · identify your unique needs · assess your strengths and weaknesses · set your priorities · develop healthy stress management skills · deepen your communication and connection · tackle problems as a team · find ways to rest and recharge · nurture sexual intimacy · build a strong support network · and so much more
Ce document fait la description des besoins de répit ou de dépannage auprés des famille d'enfant rencontrant des difficultés importantes. Certains modèles sont proposés comme la coopérative de services. Le focus est orienté sur les besoins des parents et de la famille ainsi que pour l'élaboration des systèmes d'évaluation.
The current incidence of autism in South Africa is 1 :88 and is gradually increasing (Lindenberg, 2013). A number of South African schools that cater for learners with autistic spectrum disorder (ASD) have also emerged and aim to address the increasing demand for the assistance of both the children diagnosed with ASD and their families (American Psychiatric Association, 2013; Lindenberg, 2013). By definition, respite care is an intermittent service offered to the parents of a chronically ill child to substitute them, when they are in need of a break, from their 24/7 responsibility in caring for their child (Neufeld, Query, & Drummond, 2001). Current literature alludes to difficulties experienced by children with ASD with regards to their psychological, emotional and social functions, which suggests that there may be a very real need for respite care (Benderix, Nordstrom, & Sivberg, 2006; Desai, Divan, Wertz, & Patel, 2012; Molteno, Molteno, Finchilescu, & Dawes, 2001 ; Pengelly, Rogers, & Evans, 2009; Whitaker & Hirst, 2002; Woodgate, Ateah, & Secco, 2008). The purpose of the current study is to explore the unique experiences of parents of children diagnosed with ASD who utilise private respite care services in South Africa. Primary research question: What are the experiences of South African parents of children diagnosed with ASD who utilise private respite care in South Africa? In conducting this study, a qualitative case study method and a research design, that utilised interpretivism as paradigm, was used to capture the unique experiences of parents utilising private respite care for their child with ASD. The case study was confined to parents who had recently utilised respite care at a specific private respite care centre in South Africa. The data collection strategy encompassed semi-structured interviews in which three parents, representing three separate parenting styles, were interviewed. Measures were taken to ensure the quality of the data and ethically responsible research practice.
Together, the study points to the need for future studies to investigate a broad range of types of respite programs for individuals with ASD and their families.