Julia Orkin1,2,3, Laura Beaune3, Clara Moore1,3, Natalie Weiser1, Danielle Arje1,4, Adam Rapoport2,5,6, Kathy Netten1, Sherri Adams1,3,7, Eyal Cohen1,2,3, Reshma Amin8,3,9. 1. Complex Care Program, Division of Pediatric Medicine. 2. Department of Pediatrics and. 3. SickKids Research Institute, The Hospital for Sick Children, Toronto, Canada. 4. Michael G. DeGroote School of Medicine, Faculty of Health Sciences, McMaster University, Hamilton, Canada. 5. Pediatric Advance Care Team, Department of Pediatrics and. 6. Emily's House Children's Hospice, Toronto, Canada. 7. Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada. 8. Department of Pediatrics and reshma.amin@sickkids.ca. 9. Division of Respiratory Medicine, and.
Abstract
BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP) conversations need to be uniquely tailored to this population. Our primary objective for this study was to develop an in-depth understanding of the ACP experiences from the perspectives of both parents and health care providers (HCPs) of CMC. METHODS: We conducted 25 semistructured interviews with parents of CMC and HCPs of various disciplines from a tertiary pediatric hospital. Interview guide questions were focused on ACP, including understanding of the definition, positive and negative experiences, and suggestions for improvement. Interviews were conducted until thematic saturation was reached. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis. RESULTS: Fourteen mothers and 11 HCPs participated in individual interviews. Interviews revealed 4 major themes and several associated subthemes (in parentheses): (1) holistic mind-set, (2) discussion content (beliefs and values, hopes and goals, and quality of life), (3) communication enhancers (partnerships in shared decision-making, supportive setting, early and ongoing conversations, consistent language and practice, family readiness, provider expertise in ACP discussions, and provider comfort in ACP discussions), and (4) the ACP definition. CONCLUSIONS: Family and HCP perspectives revealed a need for family-centered ACP for CMC and their families. Our results aided the development of a family-centered framework to enhance the delivery of ACP through a holistic mind-set, thoughtful discussion content, and promoting of conversation enhancers.
BACKGROUND AND OBJECTIVES:Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP) conversations need to be uniquely tailored to this population. Our primary objective for this study was to develop an in-depth understanding of the ACP experiences from the perspectives of both parents and health care providers (HCPs) of CMC. METHODS: We conducted 25 semistructured interviews with parents of CMC and HCPs of various disciplines from a tertiary pediatric hospital. Interview guide questions were focused on ACP, including understanding of the definition, positive and negative experiences, and suggestions for improvement. Interviews were conducted until thematic saturation was reached. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis. RESULTS: Fourteen mothers and 11 HCPs participated in individual interviews. Interviews revealed 4 major themes and several associated subthemes (in parentheses): (1) holistic mind-set, (2) discussion content (beliefs and values, hopes and goals, and quality of life), (3) communication enhancers (partnerships in shared decision-making, supportive setting, early and ongoing conversations, consistent language and practice, family readiness, provider expertise in ACP discussions, and provider comfort in ACP discussions), and (4) the ACP definition. CONCLUSIONS: Family and HCP perspectives revealed a need for family-centered ACP for CMC and their families. Our results aided the development of a family-centered framework to enhance the delivery of ACP through a holistic mind-set, thoughtful discussion content, and promoting of conversation enhancers.
Authors: Sarah Lord; Clara Moore; Madison Beatty; Eyal Cohen; Adam Rapoport; Jonathan Hellmann; Kathy Netten; Reshma Amin; Julia Orkin Journal: JAMA Netw Open Date: 2020-07-01
Authors: Sima Z Bedoya; Abigail Fry; Mallorie L Gordon; Maureen E Lyon; Jessica Thompkins; Karen Fasciano; Paige Malinowski; Corey Heath; Leonard Sender; Keri Zabokrtsky; Maryland Pao; Lori Wiener Journal: Front Psychol Date: 2022-06-08
Authors: Colin Macarthur; Eyal Cohen; Sherri Adams; Francine Buchanan; Natasha R Saunders; Jeremy N Friedman Journal: Children (Basel) Date: 2022-03-11