Children's lived experiences of hematopoietic stem cell transplantation

Abstract

Although hematopoietic stem cell transplantation is a valuable treatment in many life-threatening pediatric disorders, a large number of children who receive hematopoietic stem cell transplantation are faced with a variety of physical and psychological problems throughout this process. In this study, we explored the lived experiences of these children during their treatment to provide a better understanding of their main concerns, emotions, and expectations. The participants were six children, aged between 6 and 17 years, who underwent hematopoietic stem cell transplantation. Data were collected through individual, in-depth, and semistructured interviews. Using interpretive phenomenological analysis, the findings revealed that the children experienced "transplantation rejoicing" in this "difficult passage", which was associated with "deepening of family ties". Awareness of these experiences, feelings, and concerns can help in the development of more professional interventions to provide children with holistic care during their hospitalization.

A family empowerment program for families having children with thalassemia, Thailand

“…Family caregivers also experience stress and anxiety, low self-esteem, and financial burdens (Wacharasin et al, 2006). Families had increased positive relationships (Wacharasin et al, 2008) that might be associated with their rejoicing in their children having stem cell transplantation (Manookian et al, 2014).…”

Collaboration is key: The actual experience of disciplines working together in child care

“…In this study, we examine actual experience from a social constructionist perspective that emphasizes the social processes by which people develop their social reality and knowledge about that reality in an ongoing way in interaction with others (Cohen, Duberley & Mallon, 2004). Recently lived experience research has been used in the nursing and health sciences of children with hematopoietic stem cell transplantation (Manookian et al, 2014), changing bodies (Noonil et al, 2012), and congenital heart disease (Lee & Kim, 2012). Our study is one of the first to explore an inter-disciplinary relationship in a childcare centre through actual experience.…”

Transplantation Through the Generations

“…Depression and anxiety in an ill child can result in disability and morbidity and are associated with psychiatric illness (Chang 2012). Children undergoing HSCT are a high-risk group for developing these problems (Manookian et al 2014). Contributing factors include:…”

“…During this time, they can develop deep sibling friendships, fed by a desire to be more helpful especially when the ill sibling feels lonely. When stem cells are donated by one a sibling, the ill child experiences more positive feelings about him/her (Manookian et al 2014).…”

“…Transplantation should be viewed as a chance of hope for a healthy future and long-lasting happiness for the child. If he/she maintains this positive attitude being hopeful about his/her recovery, the child can have a positive response from the treatment and overcoming complications (Manookian et al 2014).…”