The Breadth of Hopes

Feudtner, Chris

doi:10.1056/nejmp0906516

Cited by 104 publications

(62 citation statements)

References 3 publications

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“…Hope, like goals, was another general framework that parents used when speaking broadly about their decision making (Feudtner 10 December 2009; Benzein, Norberg et al 2001; Feudtner 2005). Unlike when they talked about goals, when parents were speaking of “hopes,” they were less likely to use the adjectives of realistic or unrealistic to modify their words.…”

Section: Resultsmentioning

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: Resultsmentioning

confidence: 99%

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

Carroll

Mollen

Aldridge

et al. 2012

AJOB Primary Research

Self Cite

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“…Feudtner 41 has noted that hope is broad and multifaceted, and that individuals experience many different hopes simultaneously. Parents may, for example, hope at once for a long life for their child, for a meaningful life, for limited suffering, and for the child' s experience of love within a family.…”

Section: Research In the Pediatric Settingmentioning

confidence: 99%

Communicating About Prognosis: Ethical Responsibilities of Pediatricians and Parents

2014

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Clinicians are sometimes reluctant to discuss prognosis with parents of children with life-threatening illness, usually because they worry about the emotional impact of this information. However, parents often want this prognostic information because it underpins informed decision-making, especially near the end of life. In addition, despite understandable clinician concerns about its emotional impact, prognostic disclosure can actually support hope and peace of mind among parents struggling to live with a child’s illness. Children, too, may need to understand what is ahead to manage uncertainty and make plans for the ways their remaining life will be lived. In this article, we describe the ethical issues involved in disclosure of prognostic information to parents and children with life-threatening illness and offer practical guidance for these conversations.

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“…[1][2][3] Given this very narrow definition, the disclosure of prognostic information, particularly when felt to be grim, becomes especially challenging for the clinician 1,4,5 and is often perceived as being in opposition to hope. 3,6,7 Yet work in other pediatric populations suggests that hope is not necessarily incompatible with an understanding of a poor prognosis 8,9 ; instead, open and forthright dialogue around prognosis, even and especially when there is little chance of cure, preserves patient autonomy and allows for choices at the end of life that are consistent with personal values.…”

mentioning

confidence: 99%

Parental Hope for Children With Advanced Cancer

et al. 2015

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BACKGROUND: Previous work suggests that parents of children with cancer can remain hopeful despite receiving prognostic information, but we know little about what hope means to such parents, or the extent to which parents can feel hopeful even while facing the child's impending death. METHODS:We audiotaped conversations between clinicians and parents of 32 children with relapsed or refractory cancer, and then interviewed parents about their hopes and expectations for their child.RESULTS: Parent statements about prognosis in interviews mirrored those made by clinicians during discussions about the child's diagnosis with refractory or relapsed cancer. Clinicians used language referring to hope during these conversations but did not ask parents directly about their hopes. Parents expressed a range of hopes for their children, from hopes related to cure or treatment response, to quality of life, normalcy, and love and relationships for the child. For most parents, expectations about prognosis were not aligned with their hopes for the child; for example, many parents hoped for a cure and also reported that they did not believe cure was possible. Many parents were able to acknowledge this incongruence.CONCLUSIONS: Parents accurately conveyed the reality of their child's serious condition in the setting of advanced cancer, and yet maintained hope. Hopes were not limited to hope for cure/ treatment response. Clinicians should be encouraged to engage in direct conversations about hope with parents as a means to elicit realistic hopes that can help to focus the most meaningful plans for the child and family. WHAT'S KNOWN ON THIS SUBJECT:Although physicians worry that communicating about prognosis or life-threatening illness can take away hope, previous work suggests that prognosis communication may even enhance hope. The nature of hopes held by parents of children with advanced cancer was not previously understood.WHAT THIS STUDY ADDS: Parents in our study frequently recognized their child' s poor prognosis, yet held many different hopes, including for cure, quality of life, and meaningful relationships. Parents who hoped for cure often recognized that this was not possible for their child.

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The Breadth of Hopes

Cited by 104 publications

References 3 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

Communicating About Prognosis: Ethical Responsibilities of Pediatricians and Parents

Parental Hope for Children With Advanced Cancer

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