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“Give them the door but don’t push them through it”: Family Attitudes Toward Physician-Led Spiritual Care in Pediatric Palliative Medicine

Abstract

Little is known about pediatric caregivers’ perceptions of religious or spiritual (R/S) care provided by physicians. We conducted a qualitative, semistructured interview study to understand perceptions of pediatric caregivers toward physician-led R/S care. Participants were 20 primary caregivers whose children were hospitalized and receiving palliative care services. Interviews were audio recorded, transcribed verbatim, and analyzed using constant comparative methods. Three recurrent themes emerged regarding physician-led R/S care: (1) Most caregivers view providing R/S care as a positive sign of physician empathy, while a minority (3/20) prefer to keep R/S and medical care separate, (2) many caregivers prefer R/S care from a physician with whom they have a close relationship and/or share a faith background, and (3) physicians should open the door, but allow families to lead conversations about R/S care. Caregivers have mixed perceptions on physicians engaging in R/S care; most prefer that families set the direction of R/S care for themselves and their loved ones. Physicians should be trained to evaluate families’ spiritual backgrounds and needs in ways that respectfully open the door to these conversations.

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Acknowledgments

We would like to thank Mira Shenouda for her dedication in transcribing all participant interviews.

Funding

Alan Gleitsman Student Fellowship in Palliative Care.

Author information

Correspondence to Laura C. McNamara.

Ethics declarations

Conflict of interest

The authors declare that they have no conflicts of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the University of Pittsburgh Institutional Review Board (PRO16030282) with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in this study.

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Disclaimer The views expressed in this article are held by its authors and do not represent the viewpoint of Beth Israel Deaconess Medical Center, the University of Pittsburgh or UPMC.

Appendix: Semistructured Interview Guide

Appendix: Semistructured Interview Guide

These first questions ask about your general beliefs regarding the role of spiritual supportive services in the healthcare field. These services are any form of care that recognize the patient or family’s religion or spirituality while attending to any spiritual needs that arise during medical care.

  1. (1)

    Are there sources of strength other than the promise of medical technology to which you turn during illness?

  2. (2)

    What role do you think religious or spiritual care should play in a person’s healthcare?

    Follow-up Probes:

    • Tell me more about why you feel that way.

These next questions ask about any personal experiences with religious or spiritual care throughout the course of your child’s illness.

  1. (1)

    Do you feel like you have had any religious and/or spiritual needs since your child’s diagnosis?

    If “Yes” Follow-up Probes:

    • Tell me more.

    • How well do you feel like your religious and/or spiritual needs have been met during your child’s illness?

    • What has been most helpful in meeting these needs?

    • What has been missing?

    • Is there anything that would be more helpful?

  2. (2)

    Now, I’d like you to think about if you have ever had a conversation about your religious or spiritual beliefs and/or needs with a member of your child’s medical team. The medical team consists of anyone participating in your child’s care, such as nurses, physicians, therapists, chaplains, social workers, child life, etc. If you have had more than one conversation, I’d like you to tell me about a conversation that was particularly helpful to you or that went well.

    Follow-up Probes:

    • Tell me more about that conversation. When did this conversation occur, specifically within the context of your child’s medical care?

    • What did you talk about?

    • Who initiated this conversation?

    • Who was present for this conversation?

    • Can you describe to me your relationship with the(se) provider(s)?

    • What do you think the purpose of this conversation was?

    • How did you feel about this conversation?

    • What were the things that were most helpful about this conversation? Tell me more about why you found [X] helpful.

    • What were the things that were not helpful about this conversation? Tell me more about why you found [X] unhelpful? What would have made the conversation more helpful to you?

    • If you could change anything about the conversation, what would you change?

    • In what ways, if at all, did this conversation affect decisions you made regarding your child’s medical care?

  3. (3)

    Now, I wonder if you have ever had a conversation about these religious or spiritual issues that was not particularly helpful to you or that could have gone better?

    Follow-up Probes:

    • Tell me more about that conversation. When did this conversation occur, specifically within the context of your child’s medical care?

    • What did you talk about?

    • Who initiated this conversation?

    • Who was present for this conversation?

    • Can you describe to me your relationship(s) with the(se) provider(s)?

    • What do you think the purpose of this conversation was?

    • How did you feel about this conversation?

    • What were the things that were most helpful about this conversation? Tell me more about why you found [X] helpful.

    • What were the things that were not helpful about this conversation? Tell me more about why you found [X] unhelpful? What would have made the conversation more helpful to you?

    • If you could change anything about the conversation, what would you change?

    • In what ways, if at all, did this conversation affect decisions you made regarding your child’s medical care?

  4. (4)

    Has any physician that participates in the medical care of your child ever specifically asked about your religious or spiritual beliefs and/or needs?

    If “Yes” Follow-up Probes:

    • Tell me more about that conversation.

    • Can you describe your relationship with the provider [e.g., primary care physician, palliative care physician, length of relationship]?

    • What do you think the purpose of this conversation was?

    • How did you feel about this conversation?

    • What were the things that were most helpful about this conversation? Tell me more about why you found [X] helpful.

    • What were the things that were not helpful about this conversation? Tell me more about why you found [X] unhelpful? What would have made the conversation more helpful to you?

    • If you could change anything about the experience of [X], what would you change?

    • In what ways, if at all, did this conversation affect decisions you made regarding your child’s medical care?

    If “No” Follow-up Probes:

    • Tell me how you feel about the possibility of your child’s physicians here in the hospital asking you about these sorts of religious or spiritual issues.

    • Tell me more about why you feel this way.

  5. (5)

    If no one has ever asked about your religious or spiritual needs/beliefs, what do you think about the possibility of a member of the medical team asking you about these topics?

    Follow-up Probes:

    • Tell me more about why you feel that way.

    • [if feels positive] Who would you want to ask about your religious or spiritual beliefs?

These questions ask about your feelings in general about religious and spiritual care in health care.

  1. (1)

    How do you feel, in general, about physicians asking questions about your religious or spiritual beliefs?

  2. (2)

    What do you think about physicians providing religious/spiritual comfort?

  3. (3)

    If you could give advice to physicians about how to talk about religious or spiritual issues with families of children with a serious illness, what would you say?

The next set of questions asks about your personal religious/spiritual beliefs throughout the course of your child’s illness and how your religious/spiritual beliefs were changed or reinforced by that experience.

  1. (1)

    Have your religious/spiritual beliefs changed since the diagnosis?

    If “Yes” Follow-up Probes:

    • Tell me more…

    • How have your beliefs or values changed?

    • What do you think contributed to this change?

    If “No” Follow-up Probes:

    • What has allowed your beliefs and or values to remain the same throughout your child’s illness?

The last section of the interview consists of a paper questionnaire.

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McNamara, L.C., Okoniewski, W., Maurer, S.H. et al. “Give them the door but don’t push them through it”: Family Attitudes Toward Physician-Led Spiritual Care in Pediatric Palliative Medicine. J Relig Health (2020). https://doi.org/10.1007/s10943-020-00991-z

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Keywords

  • Pediatric palliative care
  • Spiritual care
  • Spiritual screening
  • Spiritual history
  • Pediatric caregivers