Publications by authors named "Rachel Rusch"

5 Publications

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Educational Priorities for Providing End-of-Life Care: Parent Perspectives.

Pediatrics 2021 Oct 13;148(4). Epub 2021 Sep 13.

Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland.

Objectives: Partnership with parents is a tenet of pediatric medicine; however, initiatives to include parents in education and research have been limited. Through focus groups, we included parents at the beginning of curriculum development by asking them to identify the priorities, existing supports, and opportunities for improvement in their child's end-of-life (EOL) care.

Methods: English and Spanish-speaking bereaved parents whose child had been cared for by the palliative care team and had died >18 months before the study initiation were invited to participate. In-person focus groups and a follow-up phone call were used to elicit opinions and capture a diversity of viewpoints. Themes were identified and clustered through an iterative analytic process.

Results: Twenty-seven parents of 17 children participated, with the total sample size determined by thematic saturation. Four themes were identified as important to parents in their child's EOL care: (1) honoring the role of the parent, (2) having confidence in the care team, (3) receiving gestures of love and caring, and (4) navigating logistic challenges.

Conclusions: We asked parents to be partners in guiding priorities for health care education and professional development to improve pediatric EOL care. In addition to strengthening skills in communication, confidence in the team, and compassion, parents in this study identified a need for hospital staff to anticipate financial and social stressors and provide supportive resources more readily. Additionally, parents described clinical and nonclinical staff as providing support, suggesting that a multidisciplinary and interdisciplinary curriculum be developed to improve pediatric EOL care.
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http://dx.doi.org/10.1542/peds.2021-051379DOI Listing
October 2021

The Time Ahead.

Authors:
Rachel Rusch

J Palliat Med 2021 Apr 27. Epub 2021 Apr 27.

Divisions of Comfort and Palliative Care, Children's Hospital Los Angeles, Los Angeles, California, USA.

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http://dx.doi.org/10.1089/jpm.2021.0188DOI Listing
April 2021

The Long Shadow: Collateral Impact and Finding Resilience Amidst a Global Pandemic .

J Soc Work End Life Palliat Care 2021 Apr-Sep;17(2-3):218-236. Epub 2021 Mar 15.

Pediatric Advanced Care Team, Boston Children's Hospital and Dana-Farber Cancer Institute, Boston, Massachusetts, USA.

This manuscript illuminates the nuanced ways in which the COVID-19 pandemic has impacted the pediatric palliative care social work role and clinical care in caring for children with life-limiting illnesses and their families throughout the country. The authors discuss memorable moments, logistical impacts, telehealth usage, decision-making experiences, end of life care, bereavement practices, specialized interventions, and self-care. The paper concludes with lessons learned and practical recommendations for the future.
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http://dx.doi.org/10.1080/15524256.2021.1894312DOI Listing
September 2021

Bibliotherapy and Bereavement: Harnessing the Power of Reading to Enhance Family Coping in Pediatric Palliative Care.

J Soc Work End Life Palliat Care 2020 Apr-Jun;16(2):85-98. Epub 2020 Apr 1.

Doctoral Program, Silver School of Social Work, New York University, New York, New York, USA.

Bibliotherapy is a therapeutic intervention that could potentially be utilized by pediatric palliative care social workers to aid in providing individualized support and adaptive coping techniques through end-of-life and bereavement. Multiple modalities of implementing bibliotherapy are considered, including applications in individual and group counseling. An institutionally supported bibliotherapy program that aims to provide therapeutic and recreational texts for patients, families and clinicians is described. Suggested guidelines and book titles for use in practice with bereaved siblings and families are provided alongside targeted description for use in clinical practice.
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http://dx.doi.org/10.1080/15524256.2020.1745728DOI Listing
April 2021

Bereavement After a Child's Death.

Child Adolesc Psychiatr Clin N Am 2018 10 27;27(4):579-590. Epub 2018 Jun 27.

Pediatric Advance Care Team, Boston Children's Hospital, Dana Farber Cancer Institute, Boston, MA, USA.

The death of a child is a heart-wrenching experience that can have a significant impact on parents, siblings, and families while also often having ripple effects throughout the child's community. Pediatric loss has an impact on family structure and dynamics, individual identity formation, and conceptualization as well as professional practice. This article explores bereavement after a child's death through the lens of the family, the parent, the sibling, the forgotten grievers, and the provider.
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http://dx.doi.org/10.1016/j.chc.2018.05.010DOI Listing
October 2018
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