JOPHON NCPD (2021 July/Aug) - Parent Caregiving Experiences and Posttraumatic Growth Following Pediatric HSCT-ARTICLE: JOPHON CNE (2021 July/Aug) - Parent Caregiving Experiences and Posttraumatic Growth

ARTICLE: JOPHON CNE (2021 July/Aug) - Parent Caregiving Experiences and Posttraumatic Growth

Pdf Summary

This qualitative study examined how parents experience intensive caregiving and develop posttraumatic growth (PTG) during the first 100 days after their child’s allogeneic hematopoietic stem cell transplant (HSCT). Thirty-one primary parent caregivers (mostly mothers; median age 38) completed semi-structured interviews at a pediatric transplant center. Using content analysis guided by Tedeschi and Calhoun’s PTG theory, the researchers identified four major themes shaping parent experiences.

First, <strong>contextual factors</strong> included psychosocial disruptions (relocation, financial strain, work disruption, isolation due to infection precautions, and altered family roles) and healthcare-system influences. Nurses were central: parents valued reassurance, clear explanations, teaching for complex home care, and consistent providers; negative experiences occurred when preferences were ignored or communication felt insufficient. Family-centered rounds and access to resources (volunteer programs, parent centers, meeting other HSCT families) supported coping.

Second, <strong>crisis reactions</strong> involved heavy cognitive load, shock, confusion, fatigue, and hypervigilance, alongside intense mixed emotions. Parents reported fear, anxiety, dread, guilt, anger, and sadness, but also hope, gratitude, relief, and happiness as recovery progressed. Social support from spouses, family, community, and faith communities could buffer distress, though some relationships weakened.

Third, parents used diverse <strong>coping strategies</strong>: problem-focused approaches (task schedules, information seeking, infection prevention, symptom management), emotion-focused approaches (avoidance, spiritual practices, boundaries, counseling and self-care), and cognitive reframing (acceptance, focusing on the present, finding purpose).

Finally, parents reported <strong>PTG outcomes</strong>, including strengthened relationships, empathy and desire to help others, increased personal strength, deeper spirituality, and greater appreciation for life and healthcare—despite ongoing uncertainty. The authors conclude that clinicians, especially nurses, can foster PTG by improving communication, preparedness at key transitions (pre-admission, inpatient waiting for engraftment, discharge), supporting self-care, and encouraging positive reinterpretation of the HSCT experience.

Keywords

allogeneic hematopoietic stem cell transplant

pediatric HSCT

parent caregiver experiences

intensive caregiving

first 100 days post-transplant

posttraumatic growth (PTG)

qualitative content analysis

nursing communication and support

coping strategies (problem-focused and emotion-focused)

psychosocial disruptions and social support