Communication in Pediatric Oncology: A Qualitative Study

Sisk, Bryan A.; Friedrich, Annie B.; Blazin, Lindsay; Baker, Justin N.; Mack, Jennifer W.; DuBois, James M.

doi:10.1542/peds.2020-1193

Cited by 62 publications

(74 citation statements)

References 33 publications

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“…Six of the themes had been previously identified in research involving adult oncology patients and two were unique to the pediatric oncology study sample [12]. One of the unique themes was related to validating and reinforcing parental beliefs about having been 'good parents' to their very ill child [12]. The authors of this qualitative study urged for additional inquiry into this revealed 'good parent' theme [13].…”

Section: Introductionmentioning

confidence: 84%

“…In a study involving 78 parents of children with advanced cancer, eight themes related to communication emerged from the use of semi-structured interviews [12]. Six of the themes had been previously identified in research involving adult oncology patients and two were unique to the pediatric oncology study sample [12]. One of the unique themes was related to validating and reinforcing parental beliefs about having been 'good parents' to their very ill child [12].…”

Section: Introductionmentioning

confidence: 99%

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Honoring the Good Parent Intentions of Courageous Parents: A Thematic Summary from a US-Based National Survey

et al. 2020

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Background: Parents of children with complex medical needs describe an internal, personal definition of “trying to be a good parent” for their loved child. Gaps exist in the current “good parent concept” literature: (1) When the idea of “trying to be a good parent” comes into existence for parents, (2) How parents’ definition of “being a good parent” may change over time and may influence interactions with the child, and (3) Whether parents perceive attainment of their personal definition. Aim: The purpose of this study was to explore these current gaps in the “good parent concept” knowledge base from the perspective of parents of children with chronic or complex illness. Materials and Methods: These themes were explored through a 63-item, mixed-method web-based survey distributed by the Courageous Parents Network (CPN), an organization and online platform that orients, educates, and empowers families and providers caring for seriously ill children. Results: The term “trying to be a good parent” resonated with 85% of the 67 responding parents. For the majority of parents, the concept of “being a good parent” started to exist in parental awareness before the child’s birth (70.2%) and evolved over time (67.5%) to include less judgment and more self-compassion. Parents identified their awareness of their child’s prognosis and changing health as influential on their “trying to be a good parent” concept. Parental advocacy, child’s age, and duration of illness were reported as influencing parental perceptions of having achieved their definition of “being a good parent”. Conclusions: Familiarity with parental perspectives on their parenting goodness and goals is a necessary core of family-centric health care.

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Section: Introductionmentioning

confidence: 84%

Section: Introductionmentioning

confidence: 99%

Honoring the Good Parent Intentions of Courageous Parents: A Thematic Summary from a US-Based National Survey

et al. 2020

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“…While trust-building requires time and trust has to be earned by providers (Mack et al 2017;Baenziger et al 2020), once established it is crucial on many levels. Parents are more likely to follow providers' recommendations (Mack et al 2017;Baenziger et al 2020;Sisk et al 2020). Also, trust helps build relationships between providers and parents that provide "a relational context in which other interpersonal communication occurred" (e.g.…”

Section: P3 Descr : Disclosing Prognostic Information To the Child Against Parental Wish Will Further Destabilize The Family Unitmentioning

confidence: 99%

In the name of the family? Against parents’ refusal to disclose prognostic information to children

Rost

Mihailov

2021

Med Health Care and Philos

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Parents frequently attempt to shield their children from distressing prognostic information. Pediatric oncology providers sometimes follow parental request for non-disclosure of prognostic information to children, invoking what we call the stability of the family argument. They believe that if they inform the child about terminal prognosis despite parental wishes, cohesion and family structure will be severely hampered. In this paper, we argue against parental request for non-disclosure. Firstly, we present the stability of the family argument in more detail. We, then, set out the (conceptual, legal, systemic) entitativity of the family and the kind of value the stability of the family argument assumes, before we set on to critically evaluate the argument. Our analysis shows that disclosure of prognostic information to children does not necessarily destabilize the family to a greater extent than non-disclosure. In fact, a systemic perspective suggests that mediated disclosure is more likely to result in a (long-term) stability of the family than non-disclosure. It is in the interest of the family to resist the initial aversive reaction to delivering bad news. In the final part, we draw a set of recommendations on how to facilitate decision-making in face of parental request for non-disclosure.

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“…Communication in pediatric oncology serves several functions for families, such as building relationships, exchanging information, providing validation, and supporting hope. 1 Fulfilling these functions can support peace of mind, 2 hopefulness, 3 trust in physicians, 4 and feeling acknowledged 5 and comforted. 6 Parents also report feeling prepared for decision making 7 and family self-management 8 when clinicians provide high-quality information.…”

Section: Introductionmentioning

confidence: 99%

Multilevel barriers to communication in pediatric oncology: Clinicians' perspectives

Sisk

Friedrich

Kaye

et al. 2021

Cancer

Self Cite

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BACKGROUND: Communication serves several functions in pediatric oncology, but communication deficiencies persist. Little is known about the broad spectrum of barriers contributing to these deficiencies. Identifying these barriers will support new strategies to improve communication. METHODS: The authors performed 10 focus groups on perceived communication barriers with nurses, nurse practitioners, physicians, and psychosocial professionals across 2 academic institutions. They analyzed transcripts by adapting a multilevel framework from organizational psychology. RESULTS: The authors identified 6 levels of barriers to communication from the clinicians' perspectives: individual, team, organization, collaborating hospital, community, and policy. Individual barriers were subdivided into clinician characteristics, family characteristics, or characteristics of the clinician-family interaction. Within each level and sublevel, several manifestations of barriers were identified. Some barriers, such as a lack of comfort with difficult topics (individual), cultural differences (individual), a lack of a shared team mental model (team), and time pressure (organization), manifested similarly across professions and institutions. Other barriers, such as a need for boundaries (individual), intimidation or embarrassment of family (individual), unclear roles and authority (team), and excessive logistical requirements (policy), manifested differently across professions. With the exception of collaborating hospitals, participants from all professions identified barriers from each level. Physicians did not discuss collaborating hospital barriers. CONCLUSIONS: Nurses, nurse practitioners, physicians, and psychosocial professionals experience communication barriers at multiple levels, which range from individual-to policy-level barriers. Yet their unique clinical roles and duties can lead to different manifestations of some barriers. This multilevel framework might help clinicians and researchers to identify targets for interventions to improve communication experiences for families in pediatric oncology.

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Communication in Pediatric Oncology: A Qualitative Study

Cited by 62 publications

References 33 publications

Honoring the Good Parent Intentions of Courageous Parents: A Thematic Summary from a US-Based National Survey

Honoring the Good Parent Intentions of Courageous Parents: A Thematic Summary from a US-Based National Survey

In the name of the family? Against parents’ refusal to disclose prognostic information to children

Multilevel barriers to communication in pediatric oncology: Clinicians' perspectives

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