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Visualizing social support in home pediatric palliative care using network maps.

Daniela Lindemann1, Gian Domenico Borasio2, Monika Führer1

  • 1Center for Pediatric Palliative Care, University Children's Hospital, Ludwig-Maximilians University of Munich, Munich, Germany.

Palliative Medicine
|September 1, 2019
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Summary

Digital Network Maps effectively visualize social support for parents caring for children with life-limiting illnesses. This tool helps identify key support figures and relationship dynamics in pediatric palliative care.

Keywords:
Palliative carefamilynetwork mapsparentspediatricspsychosocial support systems

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Area of Science:

  • Pediatric Palliative Care
  • Family Caregiving Research
  • Social Support Systems Analysis

Background:

  • Home care for children with life-limiting diseases presents significant challenges for family caregivers.
  • Digital Network Maps were utilized for the first time to explore family caregivers' perspectives in pediatric palliative care.

Purpose of the Study:

  • To assess if Network Maps can identify and visualize key social support members.
  • To evaluate the depiction of relationship quality and supportive life areas.

Main Methods:

  • An integrated mixed-methods study design was employed.
  • Network Map creation was combined with qualitative interviews and participant feedback.

Main Results:

  • Parents successfully created Network Maps, identifying an average of 11 support actors, primarily family and healthcare professionals.
  • Support system compositions varied significantly, even within families.
  • Some relationships were perceived as both helpful and stressful.

Conclusions:

  • Network Maps are a suitable tool for assessing the support situation of parents caring for dying children.
  • Further research should explore Network Maps' utility in understanding caregiver needs and developing interventions for pediatric palliative care teams.