Caring for the Child With Cancer at the Close of Life

Hurwitz, Craig A.; Duncan, Janet; Wolfe, Joanne

doi:10.1001/jama.292.17.2141

Cited by 92 publications

(19 citation statements)

References 64 publications

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“…Yet, parents are physically and emotionally exhausted and seek comfort (Berube, 2014). Parents experience distressing feelings, such as fear, blame, failure related to the child’s death, and grief over the loss of normalcy (Berube, 2014; removed for blind review; Bruce & Sundin, 2012; Hurwitz, Duncan, & Wolfe, 2004; O’Shea & Bennett Kanarek, 2013; Penson, Green, Chabner, & Lynch, 2002). Parents describe increased distress when they do not perceive the healthcare providers caring for their child as supportive and describe this as “suffering from care” (Bruce & Sundin, 2012).…”

Section: Discussionmentioning

confidence: 99%

Parental expectations of support from healthcare providers during pediatric life-threatening illness: A secondary, qualitative analysis

Mooney-Doyle

Santos

Bousso

et al. 2017

Journal of Pediatric Nursing

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Purposes To explain parental expectations of support from healthcare providers for their parenting roles and goals during a child’s life-threatening illness (LTI). Design and Methods Qualitative interpretive study guided by the Family Adjustment and Adaptation Response Model. Thematic analyses were conducted with data from 31 semi-structured interviews of parents of children with LTI using systematic strategies to ensure rigor including audit trails and prolonged engagement. Results We identified three themes and one meta-theme or overall theme: (1) “Help us survive this,” (2) “Let’s fight together: please fight with me, not against me, to care for my family,” and (3) “Guide me through the darkness: I am suffering.” Overall, the parents conveyed that they expect mutuality with the health care providers and system in order to keep Fighting together for my family survival. Conclusions In the daily work of caring for their families, parents of children with LTI consider survival on multiple levels. They consider the life, illness, and potential death of one child while considering the on-going survival and sustenance of family relationships. Practice Implications: Parents are distressed and grapple with conflicted feelings about managing competing needs of various family members. Relationships with health care providers can influence parents’ management of the situation and be a source of support as their parenting role changes over the illness trajectory, time, and in response to adversity.

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Section: Discussionmentioning

confidence: 99%

Parental expectations of support from healthcare providers during pediatric life-threatening illness: A secondary, qualitative analysis

Mooney-Doyle

Santos

Bousso

et al. 2017

Journal of Pediatric Nursing

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“…The question of if and how a child with a severe illness should be informed about the possibility of death and dying has long been regarded as one of the important questions in caring for these children (Hurwitz, Duncan, & Wolfe, 2004). In Western cultures there is a general support for informing the child, even younger ones about his or her disease and prognosis (even in the case of a poor one).…”

Section: Discussionmentioning

confidence: 99%

“…Occasionally, this perspective is also seen in Western cultures where it often leads to ethical conflicts between parents and members of the health care team who hold to the norm of truth telling and respect for individual autonomy (Hatano et al, 2011;Pergert & Lutzen, 2012). One of the difficulties suggested in providing general guidelines for such communication, apart from being aware of cultural differences, is to factor in the child's individual understanding of death (Hurwitz et al, 2004). For caregivers, the important issue is not the question of talking or not talking, but rather of being willing to assess and inquire about the families' needs and wishes, and abide by them (Waechter, 1971).…”

Section: Discussionmentioning

confidence: 99%

“…An earlier study found that no parent who had talked to his or her child about death regretted having done so (Kreicbergs et al, 2004b), and it has been proposed that health care practitioners should support families in their efforts to talk with their child about death, in particular if the child seems aware that he or she is going to die (Himelstein, Hilden, Boldt, & Weissman, 2004;Hinds et al, 2005;Hurwitz et al, 2004).…”

Section: Discussionmentioning

confidence: 99%

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On the Child's Own Initiative: Parents Communicate with Their Dying Child About Death

et al. 2014

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On the child's own initiative: parents communicate with their dying child about death. Research support:This study was financed by the Swedish Childhood Cancer Foundation Running head:Parents communicate with their dying child about death Previous presentations of the manuscript:The manuscript has not been presented elsewhere. Potential conflicts of interest:The authors have no potential conflicts of interest to declare.

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“…All in all, these results emphasize the critical importance of physician education about communication in order to enable parents to absorb distressing information. It also highlights the significance of implementing communication guidelines [11,32,33] in clinical practice. …”

Section: Discussionmentioning

confidence: 99%

Absorbing Information about a Child’s Incurable Cancer

Lannen¹,

Wolfe

Mack

et al. 2010

Oncology

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Purpose: To assess parents’ ability to absorb information that their child’s cancer was incurable and to identify factors associated with parents’ ability to absorb this information. Patients and Methods: An anonymous mail-in questionnaire study was performed as a population-based investigation in Sweden between August and October of 2001. 449 parents who lost a child to cancer 4–9 years earlier (response rate 80%) completed the survey. 191 (43%) of the bereaved parents were fathers and 251 (56%) were mothers. Results: Sixty percent of parents (n = 258) reported that they were able to absorb the information that their child’s illness was incurable. Parents were better able to absorb this information when the information was given in an appropriate manner (RR 1.6; CI 1.3–2.0), when they shared their problems with others during the child’s illness course (RR 1.4; CI 1.1–1.8) and when they had no history of depression (RR 1.3; CI 1.0–1.8). Parents who reported that they were able to absorb the information were more likely to have expressed their farewells to the child in their desired manner (RR 1.3; CI 1.0–1.5). Conclusions: Parents who received information that their child’s illness was incurable in an appropriate manner are more likely to absorb that information. Whether or not parents are able to absorb the information that their child’s cancer is incurable has implications in terms of preparation for the child’s impending death.

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Caring for the Child With Cancer at the Close of Life

Cited by 92 publications

References 64 publications

Parental expectations of support from healthcare providers during pediatric life-threatening illness: A secondary, qualitative analysis

Parental expectations of support from healthcare providers during pediatric life-threatening illness: A secondary, qualitative analysis

On the Child's Own Initiative: Parents Communicate with Their Dying Child About Death

Absorbing Information about a Child’s Incurable Cancer

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