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Published on: June 6, 2020
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Exploring Parental Decision Making for a Child With a Life-Limiting Condition: An Interpretive Description Study
Summary
Parents making difficult health decisions for children with life-limiting conditions experience decisional conflict. They value support from healthcare professionals and parent networks for making informed choices.
Area of Science:
- Pediatric Palliative Care
- Bioethics
- Qualitative Health Research
Background:
- Children with life-limiting conditions require complex care decisions.
- Parents face significant challenges navigating acute versus palliative treatment choices.
- Understanding parental experiences is crucial for improving decision support.
Purpose of the Study:
- To explore parents' and healthcare professionals' perceptions of parental decision-making experiences.
- To investigate the process of choosing between acute and palliative therapies for children with life-limiting conditions.
- To identify factors influencing parental decisions throughout a child's illness trajectory.
Main Methods:
- Qualitative interpretive description study design.
- Semistructured interviews conducted with 6 parents and 6 healthcare professionals.
- Thematic analysis used to identify key themes in decision-making experiences.
Main Results:
- Parents reported significant decisional conflict when making healthcare choices for their children.
- Key themes included intuitive decision-making, experiencing ambiguity, seeking support, and concerns about decision quality.
- Interprofessional decision support, supplemented by parent networks, was highly valued.
- Reassurance from healthcare professionals about their parenting was a significant supportive factor.
Conclusions:
- Parental decision-making in pediatric life-limiting conditions is complex and fraught with conflict.
- Effective decision support requires interprofessional collaboration and integration of parent support systems.
- Healthcare professionals play a vital role in validating parents' decisions and providing reassurance.
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