BACKGROUND: Respite services are recommended as an important support for caregivers of children with life-threatening conditions. However, the benefits of respite have not been convincingly demonstrated through quantitative research. AIM: To determine the impact of out-of home respite care on levels of fatigue, psychological adjustment, quality of life and relationship satisfaction among caregivers of children with life-threatening conditions. DESIGN: A mixed-methods, pre-test and post-test study SETTING/PARTICIPANTS: A consecutive sample of 58 parental caregivers whose children were admitted to a children's hospice for out-of-home respite over an average of 4 days. RESULTS: Caregivers had below-standard levels of quality of life compared to normative populations. Paired t-tests demonstrated that caregivers' average psychological adjustment scores significantly improved from pre-respite (mean = 13.9, standard error = 0.71) to post-respite (mean = 10.7, standard error = 1); p < 0.001, 95% confidence interval: 1.25-5.11). Furthermore, caregivers' average fatigue scores significantly improved from pre-respite (mean = 14.3, standard error = 0.85) to post-respite (mean = 10.9, standard error = 1.01; p < 0.001, 95% confidence interval: 1.69-7.94), and caregivers' average mental health quality of life scores significantly improved from pre-respite (mean = 44.2, standard error = 1.8) to post-respite (mean = 49.1, standard error = 1.6; p < 0.01, 95% confidence interval: -9.56 to 0.36). Qualitative data showed caregivers sought respite for relief from intensive care provision and believed this was essential to their well-being. CONCLUSION: Findings indicate the effectiveness of out-of-home respite care in improving the fatigue and psychological adjustment of caregivers of children with life-threatening conditions. Study outcomes inform service provision and future research efforts in paediatric palliative care.
BACKGROUND: Respite services are recommended as an important support for caregivers of children with life-threatening conditions. However, the benefits of respite have not been convincingly demonstrated through quantitative research. AIM: To determine the impact of out-of home respite care on levels of fatigue, psychological adjustment, quality of life and relationship satisfaction among caregivers of children with life-threatening conditions. DESIGN: A mixed-methods, pre-test and post-test study SETTING/PARTICIPANTS: A consecutive sample of 58 parental caregivers whose children were admitted to a children's hospice for out-of-home respite over an average of 4 days. RESULTS: Caregivers had below-standard levels of quality of life compared to normative populations. Paired t-tests demonstrated that caregivers' average psychological adjustment scores significantly improved from pre-respite (mean = 13.9, standard error = 0.71) to post-respite (mean = 10.7, standard error = 1); p < 0.001, 95% confidence interval: 1.25-5.11). Furthermore, caregivers' average fatigue scores significantly improved from pre-respite (mean = 14.3, standard error = 0.85) to post-respite (mean = 10.9, standard error = 1.01; p < 0.001, 95% confidence interval: 1.69-7.94), and caregivers' average mental health quality of life scores significantly improved from pre-respite (mean = 44.2, standard error = 1.8) to post-respite (mean = 49.1, standard error = 1.6; p < 0.01, 95% confidence interval: -9.56 to 0.36). Qualitative data showed caregivers sought respite for relief from intensive care provision and believed this was essential to their well-being. CONCLUSION: Findings indicate the effectiveness of out-of-home respite care in improving the fatigue and psychological adjustment of caregivers of children with life-threatening conditions. Study outcomes inform service provision and future research efforts in paediatric palliative care.
Authors: Terrah Foster Akard; Sarah Wray; Debra L Friedman; Mary S Dietrich; Verna Hendricks-Ferguson; Barbara Given; Cynthia A Gerhardt; Pamela S Hinds; Mary Jo Gilmer Journal: J Hosp Palliat Nurs Date: 2020-02 Impact factor: 2.131
Authors: Maria Brenner; Michael Connolly; Des Cawley; Frances Howlin; Jay Berry; Claire Quinn Journal: BMC Palliat Care Date: 2016-10-28 Impact factor: 3.234
Authors: Gerlinde Pilkington; Katherine Knighting; Lucy Bray; Julia Downing; Barbara A Jack; Michelle Maden; Ceu Mateus; Jane Noyes; Mary R O'Brien; Brenda Roe; Anthony Tsang; Sally Spencer Journal: BMJ Open Date: 2019-06-17 Impact factor: 2.692
Authors: Terrah Foster Akard; Samantha Burley; Maggie C Root; Mary S Dietrich; Brittany Cowfer; Kim Mooney-Doyle Journal: Palliat Med Rep Date: 2021-08-13