Date of Award
Doctor of Philosophy in Nursing
Family caregiver stress is a growing healthcare concern as more and more families are providing a large portion of care at home. As a family caregiver, parents of children living with special needs are taking on this role as a lifelong journey with their child. Due to the provision of continuous caregiving, these parents are at higher risk for exhaustion, stress, and social isolation, and the challenges can impact both the child and family’s physical and emotional well-being. The demands of caregiving can impact their physical, mental, social, and financial health. As a society, the importance of caring for the caregiver needs to be addressed as a proactive measure of sustaining care in the child’s home. Multiple goals and objectives of Healthy People 2030 focus on improving the health and well-being of parents and caregivers and those they care for within their community.
A mixed methods research design was used to evaluate change in self-reported stress levels of parents of children living with special needs and to explore the family caregivers’ perspectives on their respite experiences. The family caregiver stress of the parents in this study was assessed using the Kingston Caregiver Stress Survey (KCSS), and further through short, open-ended questions at the end of the group respite intervention. Descriptive statistics were used to compare the parent stress level pre and post the group respite, and content analysis was used to explore their perceptions and experiences with the program.
Children living with special needs attended a weekly four-hour group respite intervention in a university campus facility that has a physical therapy clinic. This intervention and facility provided ample space to provide individualized attention to the children, as well as equipment, such as floor mats, stander/gait trainer, handicap accessible swing, physio-balls, and more. The group respite intervention was scheduled on Saturday afternoons, from 12-4pm, during the spring 2023 academic semester, and ran for 12 weeks. Respite was provided on a 1:1 ratio by junior and senior level student volunteers from the College of Nursing Undergraduate Program and the Doctor of Physical Therapy program, under the supervision of nursing and physical therapy faculty. The respite intervention included companionship, direct care (i.e. feeding, medication administration, diaper changes, positioning) therapeutic and general play, walks, and conversation (verbal, non-verbal, communicative devices).
Sixteen parents of children living with special needs who attended the 12-week group respite program participated in this study. KCSS scores showed statistical significance, with a p-value 0.001 and t-score 4.51, illustrating a mean reduction in overall parental stress by 9.53 points from pre to post program. Eighty-one percent (n=13) self-reported a stress level score in the severe category pre-program. Ninety four percent (n=15) showed a reduction in their total stress score from pre to post program, with only 6% (n=1) indicating an increase in stress from the pre to post program time. KCSS questions directly related to caregiving showed significance in the reduction of stress from pre to post program with p-values ranging from <0.001 to <0.018, while questions related to future concerns scored equally high pre and post intervention among parents.
Three categories were identified within the parent interviews as to the benefits of the respite program: safe place for their child to go without their presence, trust in the care and supervision provided by respite workers, and time to spend on activities not focused on their child. Three additional sub-categories were identified based on the activities the parents participated in during the respite time: self-care, accomplishing needed or wanted tasks, and focus on others. The overwhelming recommendation among the parents was the need for more respite services. Results of this study provide nurses and other healthcare providers with knowledge of the need to recognize and address caregiver stress among parents of children with special needs. The knowledge gained provides a foundation to enhance evidence-based interventions and practices for the growing population of children living with special needs to help reduce stress for the parental family caregiver.
McGrane, Christine, "A GROUP RESPITE INTERVENTION FOR FAMILY CAREGIVERS OF CHILDREN LIVING WITH SPECIAL NEEDS" (2023). Open Access Dissertations. Paper 1608.