The Parent Perspective

October, Tessie W.; Fisher, Kiondra R.; Feudtner, Chris; Hinds, Pamela S.

doi:10.1097/pcc.0000000000000076

Cited by 134 publications

(74 citation statements)

References 23 publications

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“…A previous study 36 implemented this discrete-choice methodology to assess 43 parents of patients in a pediatric intensive care unit. The findings of the study indicated that making informed medical decisions was rated as the most important attribute for fathers and for mothers who did not identify a decision-making partner; however, mothers who identified themselves as being a member of a couple rated focusing on the child’s health and putting child’s needs above my own as the most important attributes.…”

Section: Discussionmentioning

confidence: 99%

Good-Parent Beliefs of Parents of Seriously Ill Children

et al. 2015

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IMPORTANCE Parents’ beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. OBJECTIVE To assess parents’ perceptions regarding the relative importance of 12 good-parent attributes. DESIGN, SETTING, AND PARTICIPANTS A cross-sectional, discrete-choice experiment was conducted at a children’s hospital. Participants included 200 parents of children with serious illness. MAIN OUTCOMES AND MEASURES Ratings of 12 good-parent attributes, with subsequent use of latent class analysis to identify groups of parents with similar ratings of attributes, and ascertainment of whether membership in a particular group was associated with demographic or clinical characteristics. RESULTS The highest-ranked good-parent attribute was making sure that my child feels loved, followed by focusing on my child’s health, making informed medical care decisions, and advocating for my child with medical staff. We identified 4 groups of parents with similar patterns of good-parent–attribute ratings, which we labeled as: child feels loved (n = 68), child’s health (n = 56), advocacy and informed (n = 55), and spiritual well-being (n = 21). Compared with the other groups, the child’s health group reported more financial difficulties, was less educated, and had a higher proportion of children with new complex, chronic conditions. CONCLUSIONS AND RELEVANCE Parents endorse a broad range of beliefs that represent what they perceive they should do to be a good parent for their seriously ill child. Common patterns of how parents prioritize these attributes exist, suggesting future research to better understand the origins and development of good-parent beliefs among these parents. More important, engaging parents individually regarding what they perceive to be the core duties they must fulfill to be a good parent may enable more customized and effective decision support.

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Section: Discussionmentioning

confidence: 99%

Good-Parent Beliefs of Parents of Seriously Ill Children

et al. 2015

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“…Parents often sought reassurance from physicians and other health professionals during bereavement meetings that they were indeed good parents. Hinds and colleagues (2009) and October, Fisher, Feudtner & Hinds (2014) previously described the concept of trying to be a good parent to children with terminal cancer and children with life-threatening conditions in PICUs, respectively. Among parents of children with terminal cancer, “doing right by my child” was the most frequently mentioned aspect of being a good parent (Hinds et al, 2009).…”

Section: Discussionmentioning

confidence: 99%

“…Among parents of children with terminal cancer, “doing right by my child” was the most frequently mentioned aspect of being a good parent (Hinds et al, 2009). Among parents of children in PICUs, “focusing on my child’s quality of life,” “advocating for my child,” and “putting my child’s needs above my own” were most frequently mentioned (October et al, 2014). Aspects of being a good parent identified in the current study overlap with these findings and include self-sacrifice, knowledge of the child’s condition, and a focus on the child’s quality of life.…”

Section: Discussionmentioning

confidence: 99%

Meaning making during parent–physician bereavement meetings after a child’s death.

Meert¹,

Eggly

Kavanaugh

et al. 2015

Health Psychology

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Objective Identify and describe types of meaning-making processes that occur among parents during bereavement meetings with their child’s intensive care physician after their child’s death in a pediatric intensive care unit. Methods Fifty-three parents of 35 deceased children participated in a bereavement meeting with their child’s physician 14.5±6.3 weeks after the child’s death. One meeting was conducted per family. Meetings were video recorded and transcribed verbatim. Using a directed content analysis, an interdisciplinary team analyzed the transcripts to identify and describe meaning-making processes that support and extend extant meaning-making theory. Results Four major meaning-making processes were identified: (1) sense making, (2) benefit finding, (3) continuing bonds, and (4) identity reconstruction. Sense making refers to seeking biomedical explanations for the death, revisiting parents' prior decisions and roles, and assigning blame. Benefit finding refers to exploring positive consequences of the death including ways to help others such as giving feedback to the hospital, making donations, participating in research, volunteering, and contributing to new medical knowledge. Continuing bonds refers to parents’ ongoing connection with the deceased child manifested by reminiscing about the child, sharing photographs, and discussing personal rituals, linking objects and community events to honor the child. Identity reconstruction refers to changes in parents' sense of self including changes in relationships, work, home, and leisure. Conclusions Parent-physician bereavement meetings facilitate several types of meaning-making processes among bereaved parents. Further research should evaluate the extent to which meaning making during bereavement meetings affects parents’ health outcomes.

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“…Trust in the medical and research teams is fundamental to why families agree to participate in research (83–85). When family values, preferences and perspectives are understood by researchers (86, 87), most families will cite altruism in allowing their children to participate in research (85, 88, 89), even in the absence of potential direct benefit (90). …”

Section: Approachmentioning

confidence: 99%

Research as a Standard of Care in the PICU*

Zimmerman

Anand

Meert

et al. 2016

Pediatric Critical Care Medicine

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Background Excellence in clinical care coupled with basic and applied research reflects the maturation of a medical subspecialty, advances that field, and provides objective data for identifying best practices. Pediatric intensive care units (PICU) are uniquely suited for conducting translational and clinical research. Moreover, multiple investigations have reported that a majority of parents are interested in their children’s participation in clinical research, even when the research offers no direct benefit to their child. However, such activity may generate ethical conflict with bedside care providers trying to acutely identify the best approach for an individual critically ill child. Ultimately, this conflict may diminish enthusiasm for the generation of scientific evidence that supports application of evidence-based medicine into PICU clinical standard work. Objective Provide an overview of current state PICU clinical research strengths, liabilities, opportunities, and barriers, and contrast this with an established pediatric hematology-oncology iterative research model that constitutes a learning healthcare system. Design Narrative review of medical literature published in English. Conclusions Currently most PICU therapy is not evidence-based. Developing a learning healthcare system in the PICU integrates clinical research into usual practice and fosters a culture of evidence-based learning and continual care improvement. As PICU mortality has significantly decreased, identification and validation of patient-centered, clinically relevant research outcome measures other than mortality is essential for future clinical trial design. Because most pediatric critical illness may be classified as rare diseases, participation in research networks will facilitate iterative, collaborative, multi-institutional investigations that over time identify best practices to improve PICU outcomes. Despite real ethical challenges, critically ill children and their families should have the opportunity to participate in translational/clinical research whenever feasible.

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The Parent Perspective

Cited by 134 publications

References 23 publications

Good-Parent Beliefs of Parents of Seriously Ill Children

Good-Parent Beliefs of Parents of Seriously Ill Children

Meaning making during parent–physician bereavement meetings after a child’s death.

Research as a Standard of Care in the PICU*

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