Time to go home: assisting families to take their child home following a planned hospital or hospice death

Whittle, Maggie; Cutts, Sandra

doi:10.7748/paed.14.10.24.s19

Cited by 4 publications

(1 citation statement)

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“…The decisions that parents confront are diverse, ranging from deciding whether to issue a do-not-resuscitate or do-not-intubate order, cease some form of technologically sophisticated life-supporting care, limit artificially routed nutrition and hydration (Grubb 1995), or have a child receive a tracheostomy or additional surgery (Montagnino and Mauricio 2004; Patel, Zdanski et al 2009), to deciding whether to take the child home with hospice (Dominica 1987; Whittle and Cutts 2002; Surkan, Dickman et al 2006). How this decision-making process operates, though, is not well characterized.…”

Section: Introductionmentioning

confidence: 99%

Influences on Decision Making Identified by Parents of Children Receiving Pediatric Palliative Care

Carroll

Mollen

Aldridge

et al. 2012

AJOB Primary Research

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Background Parental decision making is a critical component in the provision of palliative and end-of-life care, yet factors that parents perceive as influencing this process, when they are making decisions for their children, have not been well characterized. Methods As part of a mixed-methods cohort study, we interviewed 73 parents of 50 pediatric patients who were referred to the hospital’s pediatric palliative care service. The semistructured interviews focused on “decision making for your child”; the interviews were recorded and transcribed. A random sample (n = 13) was first coded and analyzed for core themes, and these themes were then cross-validated with a second random sample (n = 3) of interviews. Results Four dominant interrelated themes permeated parents’ discussions about the decisions they were making for their children and the process of decision making. First, Orientation and Direction (including the subthemes of Goals and Hopes, Spirituality and Meaning, and Purposeful Effort) connotes the parents’ effort to establish and clarify the broad context of decision making. Second, Defining What Is Good for the Child (including the subthemes of Quality of Life and Suffering, and Normalcy and Normalization) conveys how the parents posed questions and pondered what decisions would be in the child’s best interests. Third, the entwined theme of Relationships, Communication, and Support reflects how parents reported the social and interactive nature of decision making. Fourth, the theme of Feelings and Personal Accountability focuses inward as parents report efforts to deal with their emotional responses and self-judgments. Conclusions Parents report grappling with several influences upon their decision-making processes that extend well beyond the standard discussions of medical information exchanges and the evaluation of risks and benefits. Decision support for these parents should account for these diverse influences.

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Section: Introductionmentioning

confidence: 99%

Influences on Decision Making Identified by Parents of Children Receiving Pediatric Palliative Care

Carroll

Mollen

Aldridge

et al. 2012

AJOB Primary Research

View full text Add to dashboard Cite

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Care after Death: For the Baby and their Family, including Post Mortem Examination

Black¹,

Kerr-Elliott

Judge-Kronis

et al. 2020

Neonatal Palliative Care for Nurses

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The Experience of Decision Making in the Care of Children with Palliative Care Needs: The Experiences of Jordanian Mothers

Atout

Hemingway

Seymour

2017

Comprehensive Child and Adolescent Nursing

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The purpose of this study was to explore the experience of decision making in the care of children with palliative care needs in Jordan, from the perspective of their mothers. This study employed a collective qualitative case study approach. Data were collected in 3 pediatric wards in a Jordanian hospital. The study used 2 data collection methods: participant observation (197 observational hours) and 56 semi-structured interviews with 24 mothers, 12 physicians and 20 nurses. The findings show how Jordanian mothers seek to transfer the role of decision making to physicians, as they perceive themselves to be unable to make decisions about critical issues related to the treatment of their children. Mothers had a widespread apprehension of "future guilt," especially when they feared that any decisions they might make could have an adverse impact on their children. Contrary to the predominant pattern, some mothers took a proactive approach towards decision making about their children's treatment. These mothers requested detailed information from primary physicians and sought different sources of knowledge such as second opinions, reading online resources, or talking to other parents who had a child with similar circumstances. The study concludes that mothers prefer to involve physicians in decisions about their children's healthcare and treatment to eliminate their fear of probable future guilt; this modifies any tendency to autonomously decide for their children. These findings are underpinned by the Jordanian culture in which doctors' opinions are highly regarded.

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Time to go home: assisting families to take their child home following a planned hospital or hospice death

Cited by 4 publications

References 0 publications

Influences on Decision Making Identified by Parents of Children Receiving Pediatric Palliative Care

Influences on Decision Making Identified by Parents of Children Receiving Pediatric Palliative Care

Care after Death: For the Baby and their Family, including Post Mortem Examination

The Experience of Decision Making in the Care of Children with Palliative Care Needs: The Experiences of Jordanian Mothers

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