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Communication and Cultural Sensitivity for Families and Children With Life-Limiting Diseases: An Informed Decision-Making Ethical Case in Community-Based Palliative Care.

Publication ,  Journal Article
Koch, A; Grier, K
Published in: Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association
August 2020

The health care decisions of families of children who have life-limiting genetic diseases are impacted by multiple factors including religious and ethical values, education and knowledge, emotional trauma, availability of support, and accessibility of care. Palliative care nurses must practice the highest standards by delivering nonbiased, nonjudgmental support to patients and families; however, nurses may experience moral distress if their personal values conflict with a family's decisions and needs. This case focuses on a family receiving community-based palliative care for a child with a genetic life-limiting disease. They had a family history of this disease, which had caused the deaths of previous children, and the mother had a current unplanned pregnancy. The care team overcame language barriers and cultural obstacles to establish a trusting relationship with the vulnerable pregnant mother. They were able to support her decision to terminate her pregnancy safely by helping her to navigate a complex health care system. Using 5 crucial pillars to assist health care members with the delivery of nonjudgmental family-centered palliative care is recommended: (1) identification of biases, (2) utilization of a culturally safe approach, (3) effective communication, (4) assessment and support, and (5) knowledge of community resources.

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Published In

Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association

DOI

EISSN

1539-0705

ISSN

1522-2179

Publication Date

August 2020

Volume

22

Issue

4

Start / End Page

270 / 275

Related Subject Headings

  • Qualitative Research
  • Professional-Patient Relations
  • Palliative Care
  • Nursing
  • Mothers
  • Male
  • Humans
  • Female
  • Disabled Children
  • Decision Making
 

Citation

APA
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ICMJE
MLA
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Koch, A., & Grier, K. (2020). Communication and Cultural Sensitivity for Families and Children With Life-Limiting Diseases: An Informed Decision-Making Ethical Case in Community-Based Palliative Care. Journal of Hospice and Palliative Nursing : JHPN : The Official Journal of the Hospice and Palliative Nurses Association, 22(4), 270–275. https://doi.org/10.1097/njh.0000000000000654
Koch, Amie, and Kimberlee Grier. “Communication and Cultural Sensitivity for Families and Children With Life-Limiting Diseases: An Informed Decision-Making Ethical Case in Community-Based Palliative Care.Journal of Hospice and Palliative Nursing : JHPN : The Official Journal of the Hospice and Palliative Nurses Association 22, no. 4 (August 2020): 270–75. https://doi.org/10.1097/njh.0000000000000654.
Koch A, Grier K. Communication and Cultural Sensitivity for Families and Children With Life-Limiting Diseases: An Informed Decision-Making Ethical Case in Community-Based Palliative Care. Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association. 2020 Aug;22(4):270–5.
Koch, Amie, and Kimberlee Grier. “Communication and Cultural Sensitivity for Families and Children With Life-Limiting Diseases: An Informed Decision-Making Ethical Case in Community-Based Palliative Care.Journal of Hospice and Palliative Nursing : JHPN : The Official Journal of the Hospice and Palliative Nurses Association, vol. 22, no. 4, Aug. 2020, pp. 270–75. Epmc, doi:10.1097/njh.0000000000000654.
Koch A, Grier K. Communication and Cultural Sensitivity for Families and Children With Life-Limiting Diseases: An Informed Decision-Making Ethical Case in Community-Based Palliative Care. Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association. 2020 Aug;22(4):270–275.

Published In

Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association

DOI

EISSN

1539-0705

ISSN

1522-2179

Publication Date

August 2020

Volume

22

Issue

4

Start / End Page

270 / 275

Related Subject Headings

  • Qualitative Research
  • Professional-Patient Relations
  • Palliative Care
  • Nursing
  • Mothers
  • Male
  • Humans
  • Female
  • Disabled Children
  • Decision Making