Sources of parental hope in pediatric oncology

Sisk, Bryan A.; Kang, Tammy I.; Mack, Jennifer W.

doi:10.1002/pbc.26981

Cited by 33 publications

(60 citation statements)

References 34 publications

(41 reference statements)

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“…Aaron's mother always has a hope for her son's recovery, treating his ‘formula' as a unique, personal measurement of his health. She has evidently rearranged her role as a parent to accommodate her son's possible death (Bally et al, ; Lou, Mou, Wong, & Mao, ; Rallison & Raffin‐Bouchal, ), albeit while maintaining a state of hopefulness toward her child (Ångström‐Brännström, Norberg, Standberg, Söderberg, & Dahlqvist, ; Bally et al, ; Sisk, Kang, & Mack, ).…”

Section: Discussionmentioning

confidence: 99%

Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18

Szabat

2020

Nursing Inquiry

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The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method. Each aspect of hope is coded through the blog author's statements, from which three main aspects of hope emerge: hope for the longest possible presence of Aaron with his family, hope for control over situations, pain, and symptoms, and existential facets of hope. These various aspects reveal to what extent the experience of hope is unique. Additionally, analyzing the experience of parental hope uncovers the additional problem of inappropriate communication by health care professionals (HCPs) in intensive care units, particularly when discussing the termination of causal treatment. The problem may be solved through proper education for HCPs and serious consideration of parental involvement in order to properly elaborate guidelines on this issue. The three main aspects of parental hope discussed in this paper might expand knowledge on the issue, helping HCPs to better understand the parents' experience of care and to help sustain parental hope in pediatric palliative care.

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Section: Discussionmentioning

confidence: 99%

Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18

Szabat

2020

Nursing Inquiry

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“…The results of our study highlight how difficult it may be to implement facilitating factors in practice, such as balancing clear information with being flexible and promoting hope. Promoting hope is an important part of communication, as it has been shown to help decrease psychological distress . Our results show that suggesting a concrete plan for going forward may promote hope for aspects other than a cure, such as minimal suffering.…”

Section: Discussionmentioning

confidence: 72%

Physicians working in oncology identified challenges and factors that facilitated communication with families when children could not be cured

et al. 2019

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AimWe explored physicians’ experiences of communicating with families when their child had cancer and a cure was no longer an option, by focusing on barriers and facilitating factors.MethodsPhysicians from the six cancer centres in Sweden took part in focus group discussions between December 2017 and May 2018, and the data were analysed using qualitative content analysis. Focus groups enabled us to gather individual and shared perspectives.ResultsThe 35 physicians (20 male) had a mean age of 47 (range 31‐74) and a mean of 11 years’ experience in oncology, ranging from under one year to 43 years. They reported communication challenges when a cure was not possible, namely: emotional and mental drain, lack of mutual understanding and uncertainty about communication skills. They also reported facilitating factors: flexibility in complex conversations, the child’s position in the conversations, continuity and trusting relationships, support from colleagues and having discussed the potentially life‐threatening nature of cancer from the very start of treatment.ConclusionTraining to overcome communication issues could support the early integration of palliative care.

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“…A tanulmányok jelentős része -bár az orvosi kommunikáció sajátosságait vizsgálta, például hogy az orvos kommunikációja vajon a szülő igényeit elégíti-e ki [8] -, nem a palliációra, hanem a betegség kezdetére vagy annak első időszakára vonatkozott [8][9][10][11].…”

Section: Eredményekunclassified

Az orvosi kommunikáció sajátosságai a gyermekonkológia területén, különös tekintettel a palliatív ellátásra

Földesi¹,

Hauser

Hegedüs

2020

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A gyermekkori rosszindulatú daganatos megbetegedések esetében meghatározó jelentőségű a beteg gyermek, a családja és a kezelőorvos között kialakult kapcsolat. Ennek alakulásában döntő szerepe van az orvosi kommunikációnak. Különösen nagy hangsúlyt kap a kommunikáció színvonala abban a helyzetben, amikor nincs lehetőség a gyermek megmentésére, és a palliatív kezelés kerül az ellátás középpontjába. A gyermekkori palliatív ellátás esetében a megfelelő orvosi kommunikáció jelenleg is intenzív kutatás tárgya, melyet nagyban nehezít a téma érzékenysége, a palliatív ellátásban részesülő vagy elhunyt gyermekek szüleinek, illetve az ellátószemélyzetnek a bevonási nehézségei. A jelen munkában áttekintjük a gyermekonkológiai palliatív ellátással kapcsolatos szakirodalmat. A széles körű kutatások ellenére alacsony azon vizsgálatok száma, melyek az orvosi kommunikáció gyakorlati aspektusait igyekeznek felmérni. A szakirodalomban bőségesen rendelkezésre álló elméletek gyakorlati megvalósításának eredményességéről nem szólnak vizsgálatok. A területtel kapcsolatos általános következtetések levonását nehezítik a szociokulturális különbségek, köztük az orvosokkal szemben támasztott elvárások eltérése a különböző kulturális, vallási környezetekben. Nincs eltérés annak megítélésében, hogy a palliatív ellátás korai integrációja elengedhetetlen a diagnózisközléssel egy időben. A már rendelkezésre álló ismeretek tükrében fontos e kutatások végzése a különböző szociokulturális környezetek speciális keretei között. Orv Hetil. 2020; 161(9): 323-329.Kulcsszavak: gyermek, gyermekonkológia, orvosi kommunikáció, palliatív ellátás, szülő Special aspects of medical communication in the field of pediatric oncology focusing on palliative careRelation between the treating physician, the child with cancer and his/her parents is decisive in the field of pediatric oncology. Medical communication plays a crucial role in this relation. The quality of communication is particularly emphasized during the phase of palliative care in the case of children with incurable malignant disease. The proper medical communication during pediatric palliative care is subject of intensive research which is hindered by the sensitivity of the topic and the difficulties with inclusion of parents whose child has been lost or receiving palliative treatment and of health-care providers, respectively. In the present work, we review the publications focusing on palliative care in the field of pediatric oncology. Despite extensive research, only few investigations focus on the practical aspects of medical communication. Reports on the effectiveness of practical implementation of the existing theories are lacking. Drawing general conclusions is highly hindered by socio-cultural differences, including the diverse parental expectations towards doctors in different cultural and religious settings. However, there is a general agreement that early, simultaneous integration of palliative care at the time of diagnosis sharing is crucial. With the current knowledge, it is essential to co...

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Sources of parental hope in pediatric oncology

Abstract: Many hopes contribute to parental hopefulness, not just hope for cure. This hopefulness persists over time, even when the prognosis is poor. Clinicians should focus on supporting the myriad hopes that contribute to overall hopefulness.

Cited by 33 publications

References 34 publications

Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18

Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18

Physicians working in oncology identified challenges and factors that facilitated communication with families when children could not be cured

Az orvosi kommunikáció sajátosságai a gyermekonkológia területén, különös tekintettel a palliatív ellátásra

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