Digital-storytelling Intervention for Rural-dwelling Children
Condition: Pediatrics
Study type: Interventional

Summary: 
      The overall purpose of this study is to test the feasibility of a web-based storytelling
      intervention for rural-dwelling children (ages 8-17) with serious advanced illnesses.

      There is a growing need for home-based end-of-life and palliative care for children with
      serious illnesses. While palliative care interventions offered in home settings are
      significantly lacking, the problems are magnified by substantial gaps in access to palliative
      care for rural populations. Web-based recruitment and intervention methods have the potential
      to access hard-to-reach rural populations and provide a cost-effective health care. In
      particular, legacy-making (i.e., actions/behaviors aimed at being remembered) is one strategy
      to help decrease suffering and improve psychosocial outcomes for children with serious
      illness and end of life needs. Storytelling has successfully documented child legacies and
      may be an ideal format for children. Guided by our existing, web-based digital storytelling
      intervention and previous work, this project will offer a remotely-delivered legacy-making
      intervention to rural-dwelling children with diverse serious, advanced health conditions and
      their parents.
    

Detailed description: 
      Background: Nearly 1 million children between the ages of 8 and 17 years worldwide are
      estimated to be in need of palliative care. These children and their parents are at
      substantial risk for suffering and long-term morbidity. Pediatric palliative care
      interventions have primarily focused on children with cancer, despite children with cancer
      only representing 30 to 40% of patients receiving pediatric palliative care services. Despite
      parents preferring that children with serious illnesses die at home, nearly two-thirds of
      children die in hospital or care facilities. The need for home-based end-of-life and
      palliative care is critical for this vulnerable population, yet interventions offered in home
      settings are significantly lacking. Risks are magnified by substantial gaps in access to
      palliative care for rural populations. Challenges to care for rural-dwelling children with
      serious illnesses and their caregivers include lack of pediatric-focused local healthcare
      resources; need to move residence; disruption to family life; missed school; financial
      burdens from missed work and costs associated with food, gas, and housing; and a lack of
      communication between urban and rural healthcare providers. Thus, the burden for children
      with serious illnesses and their parents may be greater for those living in rural versus
      urban communities.

      Legacy-making (i.e., actions/behaviors aimed at being remembered) is one strategy to help
      decrease suffering and improve psychosocial outcomes for individuals with serious illness and
      end of life needs. Storytelling has successfully documented child legacies and may be an
      ideal format for children. Our interdisciplinary team, rooted in nursing's unique
      perspective, has successfully developed and tested a digital storytelling intervention in
      pediatric oncology. Parents reported that the intervention facilitated "conversations with
      [ill child] that I otherwise wouldn't have had." One parent said, "This project was really a
      neat way for [ill child] to express himself…. He loved picking out photos and thinking about
      his favorites…. we worked together, and it really did create a bond." Research in this field
      has yet to expand outside of oncology or to rural settings, and we have significantly
      modified our existing digital storytelling intervention based on parent input to further
      increase its effect. In the proposed project, guided by our conceptual framework based on our
      previous work and existing theory, our goal is to expand to non-cancer pediatric patients and
      determine the feasibility of our newly adapted intervention for rural-dwelling children with
      diverse serious, advanced conditions and their parents.

      Objective/Hypothesis: The overall purpose of this study is to test the feasibility of a
      web-based storytelling intervention for rural-dwelling children (ages 8-17) with serious
      advanced illnesses.

      Specific aims are to: (1) determine feasibility and acceptability of a digital storytelling
      intervention for rural-dwelling children with serious illness; (2) determine the feasibility
      of data collection procedures, and (3) determine child and parent perceptions of the benefits
      of storytelling.

      Study Design: One group pre- and post-test clinical trial design will be used. A total of 30
      children with any progressively declining (acute or chronic) life-threatening diagnosis per
      parent report (aged 8 to 17) and their primary parent caregivers will be recruited via
      Facebook (N=30 dyads; 60 total participants). Dyads will participate in a nurse-delivered
      intervention that will guide children to create electronic digital storyboards about
      themselves during 6 sessions over 6 weeks. A trained nurse will deliver sessions averaging 1
      hour each via Zoom. Dyads will receive a final digital story that plays in a cinematic
      format. Participants will be asked to complete baseline and post-intervention measures,
      attempting to assess following outcome variables: (a) child psychological distress, (b)
      parent psychological distress, (c) parent-child communication, (d) family relationships, and
      (e) program satisfaction.
    

Intervention name(s): Web-based legacy-making intervention through digital storytelling
Intervention type(s): Other
Intervention description(s): A child-parent dyad will participate in a nurse-delivered intervention that will guide children to create electronic digital storyboards about themselves during 6 sessions over 6 weeks.
Intervention model: Single Group Assignment
Intervention model description: One group pre- and post-test clinical trial design
Masking: None (Open Label)
Primary purpose: Supportive Care
Keywords: Pediatric Palliative Care; Digital Storytelling