In my shoes: children's quality of life after heart transplantation

Abstract

The children described their quality of life as "mostly good," yet reported that life was "easy and not easy." Ten factors that affected the children's quality of life were Doing Things/Going Places, Favorite School Activities, Hard Things About School, Being With Friends and Family, Doing Things/Going Places With Friends and Family, Interactions With Friends and Family, Taking Care of My Heart, My Body, The Transplant Team, and Other Health Problems. Based on similarities in meaning, these factors were combined into 3 themes: Doing What Kids Do, Being With Friends and Family, and Being a Heart Transplant Kid. The themes and factors can provide useful direction for interventions aimed at improving the quality of life for children after heart transplantation.

Quality of life in pediatric heart transplant recipients: A comparison with children with and without heart disease

“…13 Some heart transplant recipients in our study identified specific concerns related to inability to do physical activities, finding it hard to keep up with peers and getting teased. In recent qualitative studies by Green et al, 14,15 the most important theme was the ability to do the activities other kids did, "normal kid stuff." In their study, 5 of 11 heart transplant recipients reported being victims of teasing and bullying related to their scar or, more frequently, medication side effects such as hirsutism and gingival hyperplasia.…”

Restriction and dependence to autonomy and freedom: Transformation in adolescent heart transplant recipients

“…The physical improvements afforded by transplant, and corresponding sense of freedom, are likely to be an important mechanism through which the increased quality of life that is observed in the literature occurs. Indeed, the ability to take part in desired activities, spend time with friends, and live a “normal” life are benefits that have been cited by other qualitative studies of life after transplant . Furthermore, it appears that the adolescents' improved physical functioning impacted upon their developmental trajectory, bringing their level of autonomy and independence in line with what would be expected for young people of their age.…”

Constantly responsible, constantly worried, constantly blessed: parenting after pediatric heart transplant

“…Given the limitations in endurance and strength described by these parents and the impairments in exercise performance described by other researchers,10 there will most likely be activities that the children cannot participate in both short and long term, and parents should be made aware of that. Cardiac rehabilitation should be a priority to help children develop the strength and endurance to participate in developmentally appropriate activities, which is both a key factor in children's quality of life after transplant8 and a key area of concern for parents.…”

“…Data reported in this study were collected in a larger study7,8 that explored the quality of life of heart transplant recipients between 6 and 12 years of age. Parent-child dyads were recruited through the heart transplant clinic at a regional children's hospital in the mid-South.…”