Related Experiment Videos
Stress and burden of care in families with children commencing renal replacement therapy
1Paediatric Renal Unit, City Hospital, Nottingham, U.K.
Insights
Caring for children needing renal replacement therapy causes significant maternal stress and anxiety. A burden of care assessment (BCA) can predict families needing more support, improving patient growth outcomes.
Area of Science:
- Pediatric Nephrology
- Family Medicine
- Psychosocial Health
Background:
- Children requiring renal replacement therapy (RRT) present unique long-term challenges for families.
- Understanding the psychosocial impact on families is crucial for effective care.
- Existing assessments may not fully capture the multifaceted burden of care.
Purpose of the Study:
- To examine the long-term demands and outcomes in families with children starting RRT.
- To develop and validate a Burden of Care Assessment (BCA) tool.
- To correlate BCA scores with parental stress, anxiety, and patient growth.
Main Methods:
- A collaborative study in two pediatric centers involving 38 children undergoing RRT.
- Parents completed questionnaires on stress, anxiety, and depression at multiple time points.
- A novel Burden of Care Assessment (BCA) was developed and applied.
- Medical events and family contacts were documented by the care team.
Main Results:
- Mothers reported higher stress, anxiety, and depression scores than fathers.
- Parents of older children (>10 years) experienced greater psychological distress.
- High initial BCA scores correlated positively with maternal stress and anxiety.
- Families with low BCA scores showed better patient growth performance.
Conclusions:
- Older children undergoing RRT may impose greater stress and intrusion on parents.
- The Burden of Care Assessment (BCA) is a valuable tool for identifying families needing enhanced multidisciplinary support.
- Proactive support based on BCA can potentially improve patient outcomes, including growth.
Abstract:
A collaborative project was initiated in two pediatric centers to examine the long-term demands and outcomes in families with children commencing renal replacement therapy. Parents returned questionnaires on stress, anxiety, depression, information needs, and intrusion factors pre, at 3 months, 6 months, and annually. A burden of care assessment (BCA) for families was devised using a scoring system based on the domains of patient, sibling, parents, environment, demands of therapy, and dialysis/transplant factors. Team members also documented medical events and family contacts. In 2 years, 38 patients (26 male) were enrolled with an age range 0.2-18.5 years. Mean stress, anxiety, and depression scores were higher in mothers than fathers, and scores were higher in parents of patients > 10 years compared to the patient group < 10 years. In families with a high initial BCA score there was a positive correlation with maternal stress and anxiety scores. Patients from families with a low BCA score had better growth performance. Older children requiring renal replacement therapy may produce more stress and intrusion for parents than younger children. Burden of care assessments may be a useful means of predicting families who require greater support from the multidisciplinary team.