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Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: a qualitative study.

Publication ,  Journal Article
Superdock, AK; Barfield, RC; Brandon, DH; Docherty, SL
Published in: BMC palliative care
September 2018

Medical advances have led to new challenges in decision-making for parents of seriously ill children. Many parents say religion and spirituality (R&S) influence their decisions, but the mechanism and outcomes of this influence are unknown. Health care providers (HCPs) often feel unprepared to discuss R&S with parents or address conflicts between R&S beliefs and clinical recommendations. Our study sought to illuminate the influence of R&S on parental decision-making and explore how HCPs interact with parents for whom R&S are important.A longitudinal, qualitative, descriptive design was used to (1) identify R&S factors affecting parental decision-making, (2) observe changes in R&S themes over time, and (3) learn about HCP perspectives on parental R&S. The study sample included 16 cases featuring children with complex life-threatening conditions. The length of study for each case varied, ranging in duration from 8 to 531 days (median = 380, mean = 324, SD = 174). Data from each case included medical records and sets of interviews conducted at least monthly with mothers (n = 16), fathers (n = 12), and HCPs (n = 108). Thematic analysis was performed on 363 narrative interviews to identify R&S themes and content related to decision-making.Parents from 13 cases reported R&S directly influenced decision-making. Most HCPs were unaware of this influence. Fifteen R&S themes appeared in parent and HCP transcripts. Themes most often associated with decision-making were Hope & Faith, God is in Control, Miracles, and Prayer. Despite instability in the child's condition, these themes remained consistently relevant across the trajectory of illness. R&S influenced decisions about treatment initiation, procedures, and life-sustaining therapy, but the variance in effect of R&S on parents' choices ultimately depended upon other medical & non-medical factors.Parents consider R&S fundamental to decision-making, but apply R&S concepts in vague ways, suggesting R&S impact how decisions are made more than what decisions are made. Lack of clarity in parental expressions of R&S does not necessarily indicate insincerity or underestimation of the seriousness of the child's prognosis; R&S can be applied to decision-making in both functional and dysfunctional ways. We present three models of how religious and spiritual vagueness functions in parental decision-making and suggest clinical applications.

Duke Scholars

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Published In

BMC palliative care

DOI

EISSN

1472-684X

ISSN

1472-684X

Publication Date

September 2018

Volume

17

Issue

1

Start / End Page

107

Related Subject Headings

  • Withholding Treatment
  • Spirituality
  • Religion
  • Professional-Family Relations
  • Pediatrics
  • Parents
  • Palliative Care
  • Male
  • Life Support Care
  • Humans
 

Citation

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Superdock, A. K., Barfield, R. C., Brandon, D. H., & Docherty, S. L. (2018). Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: a qualitative study. BMC Palliative Care, 17(1), 107. https://doi.org/10.1186/s12904-018-0360-y
Superdock, Alexandra K., Raymond C. Barfield, Debra H. Brandon, and Sharron L. Docherty. “Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: a qualitative study.BMC Palliative Care 17, no. 1 (September 2018): 107. https://doi.org/10.1186/s12904-018-0360-y.
Superdock AK, Barfield RC, Brandon DH, Docherty SL. Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: a qualitative study. BMC palliative care. 2018 Sep;17(1):107.
Superdock, Alexandra K., et al. “Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: a qualitative study.BMC Palliative Care, vol. 17, no. 1, Sept. 2018, p. 107. Epmc, doi:10.1186/s12904-018-0360-y.
Superdock AK, Barfield RC, Brandon DH, Docherty SL. Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: a qualitative study. BMC palliative care. 2018 Sep;17(1):107.
Journal cover image

Published In

BMC palliative care

DOI

EISSN

1472-684X

ISSN

1472-684X

Publication Date

September 2018

Volume

17

Issue

1

Start / End Page

107

Related Subject Headings

  • Withholding Treatment
  • Spirituality
  • Religion
  • Professional-Family Relations
  • Pediatrics
  • Parents
  • Palliative Care
  • Male
  • Life Support Care
  • Humans