ABSTRACT
INTRODUCTION: Families of children with special health care needs (CSHCN) routinely struggle to find suitable childcare. These families value childcare capable of supporting their child's needs, known as inclusive care, that requires trustworthy staff trained to safely care for CSHCN. METHOD: This study aimed to understand the training, experience, confidence, and perceived barriers to providing inclusive care for CSHCN from the perspective of childcare providers and directors. Childcare providers (n = 263) and directors (n = 418) responded to a statewide survey in Wisconsin in 2019. RESULTS: Results show that both childcare providers and directors perceive that the providers lack confidence in providing inclusive care. Lack of staffing, training, and expertise of childcare providers were the most frequently reported barriers to provide inclusive care. DISCUSSION: These findings confirm the need for additional education, training, resources, and research to create and maintain more inclusive childcare settings for CSHCN.
Subject(s)
Disabled Children , Child , Humans , United States , Child Care , Delivery of Health Care , Surveys and Questionnaires , Child Health , Health Services Needs and DemandABSTRACT
PURPOSE: Parents of children with special healthcare needs may become overwhelmed with the ongoing caregiving needs of their children. Caring for a child with special healthcare needs is often challenging, requiring specialized training in many cases. As a result, parents can struggle to find qualified caregivers capable of providing them a break from the 24/7 care of their child. Respite care programs are designed to provide caregivers with a much-needed temporary break. The purpose of this study was to examine parental perceptions of utilizing a respite care program. DESIGN AND METHODS: Twenty-two parents who had a child with special healthcare needs who attended a Midwestern respite care program completed a Participant Characteristic Form addressing their experiences caring for their child with special healthcare needs and using respite care services. Parents participated in a focus group (N = 4) to explore their perceptions and experiences of respite care participation. Multistage thematic analysis and descriptive statistics were used to analyze the data. RESULTS: Themes emerging from the data included: Constant care demands; It is just so stressful; Respite is a gift, we get a break; Respite program "fit"; and Respite is their special time too. Parents emphasized the benefits of respite care for their marital relationship, as well as the benefits to the children with special healthcare needs and their siblings. Parents also described the importance of tailoring respite care to the unique needs of their family. PRACTICE IMPLICATIONS: Nurses and other healthcare professionals play a critical role in addressing the unmet respite care needs of parents of children with special healthcare needs by identifying unmet needs and making appropriate referrals to services that will meet the unique needs of the family. Healthcare professionals can also volunteer with existing programs to help expand access to respite care services and increase the availability of adequately trained respite care providers whom parents can trust to provide for the complex healthcare needs of their children.
Subject(s)
Caregivers/psychology , Disabled Children/statistics & numerical data , Parents/psychology , Quality of Life , Respite Care/organization & administration , Adult , Child , Child, Preschool , Cohort Studies , Community Health Services/organization & administration , Female , Focus Groups , Health Services Needs and Demand , Humans , Male , Program Development , Program Evaluation , United StatesABSTRACT
AIM: The aim of this article is to analyze the concept of respite care in the context of caring for a child with special healthcare needs. BACKGROUND: Respite care has often been identified as an important resource for caregivers of children with special healthcare needs. It can help provide a break from the constant demands of caregiving. DESIGN: A concept analysis was conducted using an evolutionary approach. DATA SOURCE: The data source for the concept analysis was a review of literature addressing respite care for caregivers of children with special healthcare needs. REVIEW METHODS: A review of the literature was conducted and a concept model was developed using an evolutionary approach. RESULTS: A theoretical definition of respite care is provided and the defining attributes, related concepts, antecedents, and consequences of respite care are shown in a diagram of the concept of respite care. CONCLUSIONS: The conceptual model provides a framework to help nurses better understand the concept of respite care in order to educate caregivers, provide appropriate referrals, serve as providers of respite care, and advocate for policy changes related to the provision of respite care services for caregivers of children with special healthcare needs.
Subject(s)
Caregivers/psychology , Disabled Children , Models, Nursing , Respite Care/methods , Child , Female , Humans , Male , Nursing Theory , Parents/psychologyABSTRACT
While parenting, in general, can be stressful, mothers of children with autism spectrum disorder (ASD) experience chronic stress comparable to combat soldiers. Research suggests that respite care may potentially reduce stress among caregivers. However, greater understanding of this relationship is needed. The purpose of this integrative review is to examine the relationship between respite care and stress among caregivers of children with ASD. SAMPLE AND ELIGIBILITY: A final sample of 11 primary research reports were located using several databases. Articles were included that were: related to the focus of the review, written in English, and published within the last 10 years. RESULTS AND CONCLUSION: While most studies found that respite care was associated with lower stress, several found that respite care was associated with higher stress. One study found no association. A model is presented that contributes to a new understanding of this relationship. Overall, the results of this integrative review provide some evidence that respite care use may be associated with a decrease in stress among caregivers of children with ASD. However, due to the lack of consistency and quality across the studies, these findings must be interpreted with caution. IMPLICATIONS: Healthcare providers must recognize the importance of tailoring respite care services to the unique family needs. Additionally, policy changes and innovative ideas are needed to help improve the quality of respite care and help expand access. Finally, additional research is necessary to better understand the relationship between respite care and stress among caregivers of children with ASD.