Communicating Effectively in Pediatric Cancer Care: Translating Evidence into Practice

Blazin, Lindsay; Cecchini, Cherilyn; Habashy, Catherine; Kaye, Erica C.; Baker, Justin N.

doi:10.3390/children5030040

Cited by 57 publications

(66 citation statements)

References 52 publications

(69 reference statements)

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“…Parents of children with cancer who received PPC reported less distress from pain, dyspnea and anxiety during the end-of-life period [ 8 ]. Undertaking research in PPC is inherently difficult, and Nelson et al in this special issue address this in their article [ 30 ].…”

Section: Common Myths and Misconceptions In Pediatric Palliative Cmentioning

confidence: 99%

“…Just in case the disease cannot be cured—What else are you hoping for?” By exploring the extend of hope further, families may wish for very advanced treatment and prevention of pain and distressing symptoms, the possibility to go home, for grandmother to visit, to hold their child more often, or many other things. Blazin et al in this special edition explore how to translate evidence into practice and communicate effectively [ 30 ]. Even when the underlying condition cannot be cured, PPC will never give up hope.…”

Section: Common Myths and Misconceptions In Pediatric Palliative Cmentioning

confidence: 99%

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Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive

Friedrichsdorf

Bruera

2018

Children

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Among the over 21 million children with life-limiting conditions worldwide that would benefit annually from a pediatric palliative care (PPC) approach, more than eight million would need specialized PPC services. In the United States alone, more than 42,000 children die every year, half of them infants younger than one year. Advanced interdisciplinary pediatric palliative care for children with serious illnesses is now an expected standard of pediatric medicine. Unfortunately, in many institutions there remain significant barriers to achieving optimal care related to lack of formal education, reimbursement issues, the emotional impact of caring for a dying child, and most importantly, the lack of interdisciplinary PPC teams with sufficient staffing and funding. Data reveals the majority of distressing symptoms in children with serious illness (such as pain, dyspnea and nausea/vomiting) were not addressed during their end-of-life period, and when treated, therapy was commonly ineffective. Whenever possible, treatment should focus on continued efforts to control the underlying illness. At the same time, children and their families should have access to interdisciplinary care aimed at promoting optimal physical, psychological and spiritual wellbeing. Persistent myths and misconceptions have led to inadequate symptom control in children with life-limiting diseases. Pediatric Palliative Care advocates the provision of comfort care, pain, and symptom management concurrently with disease-directed treatments. Families no longer have to opt for one over the other. They can pursue both, and include integrative care to maximize the child’s quality of life. Since most of the sickest children with serious illness are being taken care of in a hospital, every children’s hospital is now expected to offer an interdisciplinary palliative care service as the standard of care. This article addresses common myths and misconceptions which may pose clinical obstacles to effective PPC delivery and discusses the four typical stages of pediatric palliative care program implementation.

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Section: Common Myths and Misconceptions In Pediatric Palliative Cmentioning

confidence: 99%

Section: Common Myths and Misconceptions In Pediatric Palliative Cmentioning

confidence: 99%

Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive

Friedrichsdorf

Bruera

2018

Children

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“…It is vital that professionals working with children with life threatening and life limiting illnesses have effective communications skills for a number of reasons. Firstly, the manner in which a diagnosis or prognosis is delivered to a family can have a profound effect on how they are able to cope in the months or years ahead (Blazin, Cecchini, Habashy, Kaye, & Baker, 2018). Secondly, when therapies have failed and the child moves towards the end of life, the ability to have empathetic and honest conversations with family about palliative options can provide comfort (Sisk, Mack, Ashworth, & DuBois, 2018).…”

Section: Introductionmentioning

confidence: 99%

“…Informational exchange is a critical element of communication among health professionals and parents (Hsiao, Evan, & Zeltzer, 2007). Receiving and obtaining adequate information is reported by families to be helpful in ameliorating the fears and uncertainties related to their children's illness (Blazin et al, 2018;Freeman, O'Dell, & Meola, 2004;Hsiao et al, 2007;Steele, 2006). Parents who are well informed about their children's illnesses feel safe and secure despite any uncertainty about the prognosis (Ringner, Jansson, & Graneheim, 2011).…”

Section: Introductionmentioning

confidence: 99%

The Practice of Mutual Protection in the Care of Children with Palliative Care Needs: A Multiple Qualitative Case Study Approach from Jordan

Atout

Hemingway

Seymour

2019

Journal of Pediatric Nursing

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This study explores the experience of disclosing critical information in the care of children with palliative care needs, from the perspective of physicians, nurses, and mothers in Jordan. Design and Methods: This study employed a qualitative case study approach. It was conducted in three paediatric units in a Jordanian hospital. Each case comprised a child aged 1-12 years with a condition eligible for palliative care who received health care in one of these units, and their most involved carers (e.g. mother, physician and nurse). Two data collection methods were employed: participant observation and semi-structured interviews with three categories of participants: mothers, physicians, and nurses. Ethical approval was obtained from the hospital ethical review board. Written consent was obtained from all participants. Results: Qualitative case studies were developed around 15 children (aged 1-12 years, nine were boys and six were girls, with varying diagnoses: renal disease, neurological conditions, and congenital heart defects). A total of 197 observational hours and 60 interviews were completed (15 mothers, 12 physicians and 21 nurses). The findings demonstrate that the practice of 'mutual protection' dominated communication between children, parents and clinical staff. Parents protected their children by disclosing only partial information about their disease, and by avoiding any information they thought would cause the child distress or loss of hope. Similarly, children avoided expression to their parents of their anxieties or fears, in order to protect them. In turn, nurses attempted to ensure observance of professional boundaries with children and mother to avoid a sense of loss when a child died. 3 Conclusion: The findings of the current study indicate that while open and honest communication between parents and children is generally recommended by literature, not all mothers agree with adopting open communication with their children concerning their illnesses. Therefore, any future intervention planned for them should respect parents' autonomy and decisions in addition to their cultural backgrounds. Practical implications: The provision of ongoing education and specialised training for professionals to provide them with culturally sensitive skills in communication and provision of emotional support for children and parents is needed to improve clinical practice in healthcare settings with limited access to specialist palliative care such as Jordan.

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“…Functional communication provides emotional support, guidance, and understanding, and makes it possible to exchange information and respond to emotions. 20,21 Communication in pediatric oncology is complex and difficult for all those involved, 22 and poor communication impacts on long-term psychological morbidity in all family members. [23][24][25][26] To support families, health care professionals need a greater understanding of what illness-related matters families find difficult to talk about.…”

mentioning

confidence: 99%

Much is left unspoken: Self‐reports from families in pediatric oncology

Lövgren

Udo

Alvariza

et al. 2020

Pediatric Blood & Cancer

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Background: Communication about illness-related subjects is complex and difficult. To support entire families in pediatric oncology, health care professionals need to know what family members think, but leave unspoken. The aim of this study was to explore how families in pediatric oncology experienced illness-related information and communication with professionals and within the family. Procedure: A cross-sectional web survey was used. Families were recruited from one pediatric oncology center in Sweden, 2-3 months after diagnosis. One hundred eighteen family members (ill children, siblings, and parents) representing 27 families filled out age-adapted surveys. Results: Eighty-six percent of the parents and 71% of the siblings reported that they had not received enough or any information about how the cancer and its treatment could affect the child's psychological health. The families reported that they did not dare ask professionals questions about psychosocial issues and future-related subjects. Nor did they talk with one another, even though 55% of the parents and 24% of the children wanted to reveal more about how they felt to someone in the family. The parents reported the lowest family communication, and few families had all members reporting the same perception of family communication. Conclusions: Much is still left unspoken in pediatric oncology and the needs of the families are prominent. Assessments of each family member's needs might form a basis for professionals to give each person adequate information and family support. An increased awareness in families about family members' different needs might lead to mutual understanding.

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Communicating Effectively in Pediatric Cancer Care: Translating Evidence into Practice

Cited by 57 publications

References 52 publications

Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive

Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive

The Practice of Mutual Protection in the Care of Children with Palliative Care Needs: A Multiple Qualitative Case Study Approach from Jordan

Much is left unspoken: Self‐reports from families in pediatric oncology

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