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.

State of the Art of Family Quality of Life in Early Care and Disability: A Systematic Review

“…In fact, the study by Meral et al [ 80 ] reveals that emotional support is the most important factor for the respondents. Svavarsdottir and Tryggvadottir [ 81 ], on the other hand, focus on the predictive nature of family support. Finally, considering the category of practices (b3), Davis and Gavidia Payine [ 79 ] recognize the value of the family-centered model as a safeguard for the needs of each family.…”

“…In the individual characteristics category (c1), six articles were related to parental stress. The majority of them focus on studying how the support [ 33 , 79 , 81 , 82 ] and the information received [ 79 , 81 ] are predictive factors of the decrease in parental stress and, consequently, of the increase in FQoL [ 78 ]. Wang et al [ 83 ] indicate that the efforts that parents with children with disabilities make in defending their kids generates considerable stress in them.…”

“…Finally, in the category focused on beliefs, (c3), Svavarsdottir, and Tryggvadottir [ 81 ] conclude that the beliefs of the parents regarding the severe illness of the child significantly predicted the FQoL.…”

“…Boehm et al [84] investigate the relationship between the parents' religiosity and the improvement of the FQoL. In the demographic aspects category (c2), nine articles consider as predictive variables for FQoL the following factors: the age of the child with a disability [41,80,83,85], the gender of the child [24,39,82], the type of disability [31,80,84], the degree of disability [80,81], the number of siblings [58,81], and the marital status of the parents [44].…”

Quality of Life, Participation, and Individualized Support in a Community-Based Yoga Class: A Case Series

“…Pediatric physical therapists can use this information to assess treatment outcomes and guide the plan of care using patient-and family-centered goals. 32 The inclusion of quality of life as an outcome measure has increased in recent years in children with both acute and chronic illnesses [33][34][35] ; however, assessment of those with lifelong conditions is somewhat limited. 32,36,37 Physical therapists have a unique opportunity to assess quality of life and participation in children, as they are often involved in evaluating and treating the impairments, activity limitations, and participation restrictions associated with acute or chronic conditions.…”