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. 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<0.05. 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.
Clinical Trials Registry: Number NCT04059393.
Background: Incorporating patient narratives into the electronic health record (EHR) is an opportunity to integrate patients' values and beliefs into their care and improve patient–clinician communication.
Objective: The study's aims were to (1) identify barriers and facilitators influencing the implementation of a cocreated patient narrative intervention and (2) assess the acceptability/usability of the patient's narrative from the perspective of key stakeholders—the patient and acute care bedside nurse.
Design: We used an implementation design using mixed methods.
Setting/Subjects: Twenty patients and 18 nurses were enrolled from five units in an acute care hospital.
Results: For patients, the narrative intervention provided an avenue to discuss and share how illness has impacted their life in psychological, social, and spiritual belief domains. For nurses, the ability to read the patient's narrative provided benefits that fostered improved communication and more connection with their patients. Despite successfully meeting recruitment targets, time was the largest barrier for patient and nurse participants. Overall, the nurse participants gave high ratings on most of the items on the System Usability Scale with one exception—EHR integration. The lack of EHR integration on the System Usability Survey corresponds with the nurses' stated desire for a prominent location of patient narratives in the EHR.
Conclusions: The patient narrative intervention was acceptable and usable for hospitalized patients and nurse participants. Our study demonstrates that a cocreated patient narrative intervention provides avenues for patients and nurses to connect despite being in hectic acute care settings.
Research is needed to examine new and innovative web-based intervention delivery methods that are feasible, cost-effective, and acceptable to children and their families to increase access to palliative care services in the home and community. Our previous work included the development of a legacy intervention using face-to-face digital storytelling for children with cancer that showed feasibility and strong promise to improve child outcomes. However, face-to-face intervention delivery techniques limited our recruitment, thus decreasing sample size and potential access to broader populations. Here we present the systematic steps of the development of a web-based legacy intervention for children (7-17 years of age) with relapsed or refractory cancer and their parent caregivers. Counts and frequencies for parent (n = 81) reports on satisfaction surveys are presented and parent suggestions for future work. Results suggest the web-based legacy intervention is feasible and acceptable, with parent-perceived beneficial outcomes for the child, parent, and family. Results provide a foundation for web-based intervention development in palliative care and the implementation of a theoretically grounded intervention to reduce suffering of seriously ill children and their family members, thereby advancing the science of symptom management in vulnerable palliative care populations.
Palliative care is patient- and family-centered care that enhances quality of life throughout the illness trajectory and can ease the symptoms, discomfort, and stress for children living with life-threatening conditions and their families. This paper aims to increase nurses' and other healthcare providers' awareness of selected recent research initiatives aimed at enhancing life and decreasing suffering for these children and their families. Topics were selected based on identified gaps in the pediatric palliative care literature. Published articles and authors' ongoing research were used to describe selected components of pediatric palliative nursing care including (I) examples of interventions (legacy and animal-assisted interventions); (II) international studies (parent-sibling bereavement, continuing bonds in Ecuador, and circumstances surrounding deaths in Honduras); (III) recruitment methods; (IV) communication among pediatric patients, their parents, and the healthcare team; (V) training in pediatric palliative care; (VI) nursing education; and (VII) nurses' role in supporting the community. Nurses are in ideal roles to provide pediatric palliative care at the bedside, serve as leaders to advance the science of pediatric palliative care, and support the community.
BACKGROUND: Limited research has examined the impact of a child's death from cancer on siblings. Even less is known about how these siblings change over time.
OBJECTIVE: This study compared changes in siblings 1 (T1) and 2 (T2) years after the death of a brother or sister from cancer based on bereaved parent and sibling interviews.
METHODS: Participants across 3 institutions represented 27 families and included bereaved mothers (n = 21), fathers (n = 15), and siblings (n = 26) ranging from 8 to 17 years old. Participants completed semistructured interviews. Content analysis identified emerging themes and included frequency counts of participant responses. McNemar tests examined differences in the frequency of responses between T1 and T2 data.
RESULTS: Participants reported similar types of changes in bereaved siblings at both time points, including changes in sibling relationships, life perspectives, their personal lives, and school performance. A new theme of "openness" emerged at T2. Frequencies of responses differed according to mother, father, or sibling informant. Overall, participants less frequently reported changes at T2 versus T1. Compared with findings in the first year, participants reported greater sibling maturity at follow-up.
CONCLUSION: Overall changes in bereaved siblings continued over 2 years with less frequency over time, with the exception of increases in maturity and openness.
IMPLICATIONS FOR PRACTICE: Providers can educate parents regarding the impact of death of a brother or sister over time. Nurses can foster open communication in surviving grieving siblings and parents as potential protective factors in families going through their grief.