Predictors of quality of life for families of children and adolescents with severe physical illnesses who are receiving hospital-based care.

Abstract

AIM: There is strong evidence regarding the impact of medical treatments on hospitalised children and their families after being diagnosed with a serious illness. Even though survival rates have increased for children and adolescents with illnesses such as cancer, kidney, liver and gastrointestinal diseases, lengthy medical procedures and symptom management may have an impact on the well-being and quality of life for families. Little is known, however, about promoting family quality of life in hospital-based paediatric settings. The main purpose of this study was to evaluate the predictors of quality of life (QOL) across physical health conditions among families of children and adolescents with cancer, kidney, liver and gastrointestinal diseases. Further, to evaluate the difference in perception on QOL among families of children with cancer compared to families of children with kidney, liver and gastrointestinal diseases.

METHOD: The study design was cross-sectional. Thirty-eight families of children with cancer, kidney, liver or gastrointestinal diseases participated at a University Hospital. Data were collected using valid and reliable instruments to measure the study variables from March 2015 to May 2016.

FINDINGS: The main result from the stepwise regression analysis indicated perceived family support and illness beliefs, significantly predicted quality of life of the family; approximately 41% of the variance in the families' perception of their quality of life was explained by the model.

CONCLUSIONS: The findings emphasise the importance of supporting and maintaining quality of life for families of children with physical illnesses.

RELEVANCE TO CLINICAL PRACTICE: Family level interventions within the healthcare system are needed for families of children with severe physical illnesses, since that can result in better outcomes for the child or adolescent and their family. Such an intervention would need to emphasise therapeutic conversations within a relational context, highlighting illness management, illness beliefs, and cognitive and emotional family support.