Improved Parent-Child Communication following a RCT Evaluating a Legacy Intervention for Children with Advanced Cancer.

Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication.We examined the impact of a web-based legacy intervention on parent-child communication. We hypothesized that compared to usual care, legacy-making would improve quality of parent-child communication.Between 2015 and 2018, Facebook advertisements were used to recruit families of children (ages 7-17) with relapsed/refractory cancer. Parent-child dyads were randomly assigned to the intervention or usual care group. The intervention website guided children to create digital storyboards over 2 weeks by directing them to answer legacy questions about themselves and upload photographs, videos, and music. Families received a copy of the child's final digital story. Children and parents completed the Parent-Adolescent Communication Scale pre- (T1) and post-intervention (T2). Linear regressions tested for differences in change from T1 to T2 between the groups controlling for T1 values using an alpha of p < .05. Intervention effects were measured using Cohen's d. Ninety-seven parent-child dyads were included for analysis. Changes in parent-child communication were not statistically significantly different between the groups, yet meaningful intervention effects were observed. The strongest effects were observed for improving father-child communication (Cohen's d = -0.22-0.33). Legacy-making shows promise to facilitate improved parent-child communication, particularly for fathers. Future studies should include fathers and measure expression of feelings and parent-child interaction. Providers should continue to facilitate family communication for children with advanced disease and realize that legacy interventions may impact mother-child versus father-child communication differently.

Parental Posttraumatic Growth After Pediatric Hematopoietic Stem Cell Transplant.

Little is known about the development of posttraumatic growth among parents of children with serious advanced disease. The purpose of this study is to describe parental posttraumatic growth 100 days after pediatric stem cell transplant. This is a cross-sectional, descriptive study of 24 parents, approximately 100 days after their children received stem cell transplant. Participants reported environmental, personal, and disease characteristics and completed measures of distress, coping, rumination, and posttraumatic growth. Evidence of parental posttraumatic growth was described in each of 5 dimensions (relating to others, new possibilities, personal strength, spiritual change, and appreciation of life). Posttraumatic growth was positively associated with parental distress, disengagement coping, and rumination measures (r = 0.44-0.47, P < .05). Appreciation of life demonstrated the strongest associations with distress and rumination (r = 0.53-0.61, P < .01). Curvilinear relationships were observed for the association of distress, disengagement coping, and involuntary engagement with posttraumatic growth (P < .05). Study results highlight opportunities for palliative care nurses and clinicians to facilitate opportunities to support parent posttraumatic growth during treatment for children's advanced disease.

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

Background: Parents of children recovering from hematopoietic stem cell transplant (HSCT) experience significant distress due to unpredictable and potentially life-threatening complications. Distress is heightened by intensive caregiving parents provide the child during the first 100 days after HSCT. Management of distress and adaptation to caregiving responsibilities may be enhanced if parents find benefit in their experiences through posttraumatic growth (PTG), yet little is known about how parents' experiences after HSCT foster PTG. This study aimed to explore how parents experience caregiving and PTG 100 days after children's HSCT. Methods: Thirty-one parents completed semi-structured interviews ∼100 days after children received HSCT. Results: Four major themes emerged from the data to describe parent experiences after HSCT: (1) psychosocial and healthcare contextual factors; (2) cognitive, affective, and social support reactions to HSCT; (3) problem-based, emotion-based, and cognitive coping strategies; and (4) PTG. Discussion: Results increase the understanding of how parents' experiences and caregiving responsibilities contribute to PTG. These findings may guide future research to understand how these experiences influence PTG. Nurses are integral to the parents' experiences. Future work should focus on nursing interventions that enhance positive reinterpretation of parents' experiences after their children's HSCT.

Caregiver Perceptions of Music Therapy for Children Hospitalized for a Blood and Marrow Transplant: An Interpretivist Investigation.

BACKGROUND: Despite pharmacological and psychosocial support, pediatric blood and marrow transplant (BMT) recipients typically experience heightened levels of somatic and psychological distress while undergoing transplant. Although clinicians have used psychosocial interventions to target distress, there are gaps in the literature concerning music therapy for children recovering from BMT. This is especially the case among younger children and those affected by rare genetic or metabolic disorders. OBJECTIVE: As caregivers are the primary decision makers for minor children, there is a need to understand their preferences and values as this constitutes a component of evidence-informed practice. Therefore, the purpose of this interpretivist investigation was to explore primary caregivers' perspectives and experiences with music therapy for their children during hospitalization for BMT. METHODS: The researchers conducted semistructured phone interviews with 15 primary caregivers of children who had received music therapy services while hospitalized for BMT. Member checking was used to ensure accuracy of the transcripts and experiences, while trustworthiness was used to verify themes. RESULTS: Fifteen caregivers of 14 pediatric BMT recipients were interviewed by phone. The following four themes emerged: (1) music therapy motivated patients to physically engage their bodies despite symptoms; (2) music therapy elevated patients' moods; (3) caregivers benefited from seeing their child engaged in music therapy; and (4) caregivers were appreciative for the opportunity and requested additional music therapy services. CONCLUSIONS: Caregivers perceived music therapy to be a positive and beneficial experience for pediatric patients while hospitalized for BMT. Implications for clinical practice, limitations, and suggestions for future research are provided.

Quality of life among boys with adrenoleukodystrophy following hematopoietic stem cell transplant.

Hematopoietic stem cell transplant (HSCT) is the only accepted treatment capable of halting the progression of X-linked cerebral adrenoleukodystrophy (CALD). While survival and neurological outcomes have been described, there is little information regarding the quality of life (QoL) of transplanted patients with CALD. This analysis is a cross-sectional study of QoL in 16 males diagnosed with CALD who underwent HSCT at a single institution. Each child or parent proxy completed subscales from the Neuro-QoL and the PROMIS Pediatric Profile Instrument representing physical, mental, and social health domains. Descriptive statistics summarized the demographic characteristics and QoL subscale T-scores, Spearman Rho correlations identified the relationships among the variables, and Mann-Whitney tests examined group differences between those with pre-HSCT Loes scores <10 and those with pre-HSCT Loes scores ≥10. The median age of respondents at the time of transplant was 8 years at HSCT (5-14) with a median of 5 years since HSCT (0.5-11). Scores from the selected QoL subscales were similar to healthy peers, though those with pre-HSCT Loes scores ≥10 had lower mobility, upper extremity function, peer interaction, and higher scores for anxiety. Although HSCT has the capability of halting progression of CALD, those with pre-HSCT Loes scores ≥10 after HSCT are at-risk for poor QoL. Longitudinal monitoring is necessary to further appreciate the factors affecting QoL among boys with CALD after HSCT, and how this may be improved.