Falling Down the Rabbit Hole: Child and Family Experiences of Pediatric Hematopoietic Stem Cell Transplant

Abstract

Pediatric hematopoietic stem cell transplant (HSCT) is an intensive treatment that can be life-threatening. All family members experience distress. We conducted a grounded theory study using a family systems-expressive arts framework to develop a theoretical understanding of the family experience of HSCT. Six families (15 family members) participated in two interviews, drew an image, and were guided through a “dialoguing with images” process. Participants did not always perceive HSCT as an experience they had lived as a family and were surprised to hear other family members’ experiences. While one mother drew, she suddenly understood it was not only her ill child, but the entire family who had “fallen down the rabbit hole.” The family experience of HSCT is described across (a) the pre-HSCT trajectory, (b) family fragmentation (hospitalization), and (c) family reintegration. We identified a critical need for targeted family intervention during the transition into HSCT, throughout and following hospitalization.

Parent Caregiving Experiences and Posttraumatic Growth Following Pediatric Hematopoietic Stem Cell Transplant

“…Time periods leading up to HSCT hospital admission, while hospitalized awaiting neutrophil engraftment, and at HSCT hospital discharge were especially difficult. This is consistent with prior work identifying that parents encounter critical time periods at hospital admission, during inpatient monitoring, and again at discharge when parents encounter general overwhelm acclimating to the healthcare setting and HSCT caregiving activities (Kaziunas et al, 2016;Liu et al, 2020a;West et al, 2020).…”

“…These interactions play a critical role in the ways parents respond to HSCT stressors, develop confidence in caring for their children, and assign positive meaning to HSCT. For example, West et al (2020) found that parental suffering was not routinely recognized during hospitalization. However, when clinicians offered emotional support and human social interaction, these relationships had a lasting and meaningful impact on the parent (West et al, 2020).…”

“…For example, West et al (2020) found that parental suffering was not routinely recognized during hospitalization. However, when clinicians offered emotional support and human social interaction, these relationships had a lasting and meaningful impact on the parent (West et al, 2020). Similarly, healthcare providers were integral in offering advice and maintaining hope for a cure, which enabled parents to continue caring for the child's needs and focus on the future (Mekelenkamp et al, 2020).…”

“…After discharge, parents describe difficulty in navigating the healthcare system, following intensive medication administration regimens and restrictive hygiene practices, and performing daily caregiving all while isolated from their family and social supports (Hoegy et al, 2019;Kaziunas et al, 2016). Caregivers describe emotional intensity, anxiety, and information overload as sources of distress during these time periods (Kaziunas et al, 2016;Liu et al, 2020a;Manne et al, 2016;West et al, 2020).…”

Produção compartilhada de jogo educativo sobre álcool com adolescentes de comunidade Quilombola

“…Desde o final do século XX, cada vez mais estudos tem demonstrado o uso de tecnologias educacionais para o cuidado da vida e saúde de pessoas, grupos e comunidades, pois a tecnologia apresenta potencial poder de educar e trazer a consciência do empoderamento do cuidar [15][16][17] .…”