Literature DB >> 22531149

Parent's perceptions of health care providers actions around child ICU death: what helped, what did not.

Dorothy Brooten1, Joanne M Youngblut, Lynn Seagrave, Carmen Caicedo, Dawn Hawthorne, Ivette Hidalgo, Rosa Roche.   

Abstract

PURPOSE: To describe parents' perspectives of health care provider actions that helped or did not around the time of infant/child's intensive care unit (ICU) death. Semistructured interviews with 63 parents (Black, White, and Hispanic) 7 months post infant/child death were audio-recorded, transcribed, analyzed, and themes identified.
FINDINGS: What helped most: compassionate, sensitive staff; understandable explanations of infant's/child's condition; experienced, competent nurses; providers did everything to help infant/child; and parents' involvement in care decisions. What did not help: insensitive, nonsupportive staff; conflict between providers and parents; communication problems around the death; inexperienced nurses and doctors; parents not understanding child's disease, care, complications.
CONCLUSIONS: Compassionate, sensitive staff and understandable explanations of children's conditions were most helpful; insensitive, nonsupportive staff least helpful by gender, racial group, or care setting. Conflict between providers and parents was most problematic for minority parents and mothers.

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Mesh:

Year:  2012        PMID: 22531149      PMCID: PMC3532561          DOI: 10.1177/1049909112444301

Source DB:  PubMed          Journal:  Am J Hosp Palliat Care        ISSN: 1049-9091            Impact factor:   2.500


  45 in total

1.  Understanding and supporting African Americans' perspectives of end-of-life care planning and decision making.

Authors:  C M Waters
Journal:  Qual Health Res       Date:  2001-05

2.  Coping of parents and siblings with the death of a child with cancer: death after terminal care compared with death during active anticancer therapy.

Authors:  K Sirki; U M Saarinen-Pihkala; L Hovi
Journal:  Acta Paediatr       Date:  2000-06       Impact factor: 2.299

3.  Communicating with children and families: from everyday interactions to skill in conveying distressing information.

Authors:  Marcia Levetown
Journal:  Pediatrics       Date:  2008-05       Impact factor: 7.124

4.  Intergenerational family support following infant death.

Authors:  Diana L White; Alexis J Walker; Leslie N Richards
Journal:  Int J Aging Hum Dev       Date:  2008

5.  Examining the needs of bereaved parents in the pediatric intensive care unit: a qualitative study.

Authors:  Kathleen L Meert; Sherylyn H Briller; Stephanie Myers Schim; Celia Thurston; Allison Kabel
Journal:  Death Stud       Date:  2009-09

Review 6.  What accounts for differences or disparities in pediatric palliative and end-of-life care? A systematic review focusing on possible multilevel mechanisms.

Authors:  Julie M Linton; Chris Feudtner
Journal:  Pediatrics       Date:  2008-09       Impact factor: 7.124

7.  Parents' perceptions of the quality of pediatric and perinatal end-of-life care.

Authors:  Kimberley Widger; Caroline Picot
Journal:  Pediatr Nurs       Date:  2008 Jan-Feb

8.  Exploring parents' environmental needs at the time of a child's death in the pediatric intensive care unit.

Authors:  Kathleen L Meert; Sherylyn H Briller; Stephanie Myers Schim; Celia S Thurston
Journal:  Pediatr Crit Care Med       Date:  2008-11       Impact factor: 3.624

9.  Searching for "the dying point:" providers' experiences with palliative care in pediatric acute care.

Authors:  Sharron L Docherty; Margaret S Miles; Debra Brandon
Journal:  Pediatr Nurs       Date:  2007 Jul-Aug

10.  Infant end-of-life care: the parents' perspective.

Authors:  C L Brosig; R L Pierucci; M J Kupst; S R Leuthner
Journal:  J Perinatol       Date:  2007-04-19       Impact factor: 2.521

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  18 in total

1.  Parents' Wishes for What They Had or Had Not Done and Their Coping After Their Infant's or Child's Neonatal Intensive Care Unit/Pediatric Intensive Care Unit/Emergency Department Death.

Authors:  Carmen Caicedo; Dorothy Brooten; JoAnne M Youngblut; Julia Dankanich
Journal:  J Hosp Palliat Nurs       Date:  2019-08       Impact factor: 1.918

Review 2.  Pediatric palliative care in the intensive care unit and questions of quality: a review of the determinants and mechanisms of high-quality palliative care in the pediatric intensive care unit (PICU).

Authors:  Sara Rhodes Short; Rachel Thienprayoon
Journal:  Transl Pediatr       Date:  2018-10

3.  School Aged Children's Experiences 7 and 13 Months Following a Sibling's Death.

Authors:  Dorothy Brooten; JoAnne M Youngblut
Journal:  J Child Fam Stud       Date:  2017-01-09

4.  Parent Grief 1-13 Months After Death in Neonatal and Pediatric Intensive Care Units.

Authors:  JoAnne M Youngblut; Dorothy Brooten; Joy Glaze; Teresita Promise; Changwon Yoo
Journal:  J Loss Trauma       Date:  2016-05-09

5.  Perinatal and pediatric issues in palliative and end-of-life care from the 2011 Summit on the Science of Compassion.

Authors:  Jonne M Youngblut; Dorothy Brooten
Journal:  Nurs Outlook       Date:  2012-10-01       Impact factor: 3.250

6.  Infant and child deaths: Parent concerns about subsequent pregnancies.

Authors:  Dorothy Brooten; JoAnne M Youngblut; Jean Hannan; Carmen Caicedo; Rosa Roche; Fatima Malkawi
Journal:  J Am Assoc Nurse Pract       Date:  2015-03-11       Impact factor: 1.165

7.  Cause of Death of Infants and Children in the Intensive Care Unit: Parents' Recall vs Chart Review.

Authors:  Dorothy Brooten; JoAnne M Youngblut; Carmen Caicedo; Lynn Seagrave; G Patricia Cantwell; Balagangadhar Totapally
Journal:  Am J Crit Care       Date:  2016-05       Impact factor: 2.228

8.  Parent health and functioning 13 months after infant or child NICU/PICU death.

Authors:  Joanne M Youngblut; Dorothy Brooten; G Patricia Cantwell; Teresa del Moral; Balagangadhar Totapally
Journal:  Pediatrics       Date:  2013-10-07       Impact factor: 7.124

9.  Death Rituals Reported by White, Black, and Hispanic Parents Following the ICU Death of an Infant or Child.

Authors:  Dorothy Brooten; JoAnne M Youngblut; Donna Charles; Rosa Roche; Ivette Hidalgo; Fatima Malkawi
Journal:  J Pediatr Nurs       Date:  2015-11-27       Impact factor: 2.145

Review 10.  Bereavement Follow-Up After the Death of a Child as a Standard of Care in Pediatric Oncology.

Authors:  Wendy G Lichtenthal; Corinne R Sweeney; Kailey E Roberts; Geoffrey W Corner; Leigh A Donovan; Holly G Prigerson; Lori Wiener
Journal:  Pediatr Blood Cancer       Date:  2015-12       Impact factor: 3.167

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