Parents' Thoughts and Perceptions on Hearing that Their Child Has Incurable Cancer

Matsuoka, Mari; Narama, Miho

doi:10.1089/jpm.2011.0410

Cited by 21 publications

(47 citation statements)

References 36 publications

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“…48,80,52,81,82 These parents are attempting to fulfill an integral role as caregiver – protecting and caring for their children. 62,83 In a recent qualitative study of 18 Romanian parents of children with cancer, parents reported three factors that contributed to restricted communication with their child: information overload and emotional turmoil, lack of knowledge and skills for disclosing the diagnosis, and assumptions about burdening the child when discussing cancer. 82 To fully understand parental behavior, clinicians should give attention to “the reason and emotion they bring to decision-making and their children’s care, their unique responsibilities as parents, and what they learn throughout the illness.” 84 …”

Section: To Tell or Not To Tell – Growing Appreciation Of Complexitymentioning

confidence: 99%

Prognostic Disclosures to Children: A Historical Perspective

et al. 2016

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Prognostic disclosure to children has perpetually challenged clinicians and parents. In this article, we review the historical literature on prognostic disclosure to children in the United States using cancer as an illness model. Prior to 1948, there was virtually no literature focused on prognostic disclosure to children. As articles began to be published in the 1950s and 1960s, many clinicians and researchers initially recommended a “protective” approach to disclosure, where children were shielded from the harms of bad news. We identified four main arguments in the literature at this time supporting this “protective” approach. By the late 1960s, however, a growing number of clinicians and researchers were recommending a more “open” approach, where children were included in discussions of diagnosis, which at the time was often synonymous with a terminal prognosis. Four different arguments in the literature were used at this time supporting this “open” approach. Then by the late 1980s, the recommended approach to prognostic disclosure in pediatrics shifted largely from “never tell” to “always tell”. In recent years, however, there has been a growing appreciation for the complexity of prognostic disclosure in pediatrics. Current understanding of pediatric disclosure does not lead to simple “black and white” recommendations for disclosure practices. As with most difficult questions, we are left to balance competing factors on a case-by-case basis. We highlight four categories of current considerations related to prognostic disclosure in pediatrics, and we offer several approaches to prognostic disclosure for clinicians who care for these young patients and their families.

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Section: To Tell or Not To Tell – Growing Appreciation Of Complexitymentioning

confidence: 99%

Prognostic Disclosures to Children: A Historical Perspective

et al. 2016

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“…Besides the expansion of caregiving tasks, these studies show that parents have to deal with uncertainty and to adapt to an accumulation of losses related to their child’s physical and functional decline [ 6 , 14 , 26 ]. Although parents intend to act in their child’s best interest, including a good death, many of them struggle with facing reality and the timely transition from preserving their child at all costs towards being prepared to let their child die [ 2 , 10 , 14 , 16 , 23 ]. Moreover, parents emphasise they have to ‘navigate uncharted territory’ and lack professional guidance, resulting in feelings of isolation and abandonment [ 15 , 37 ].…”

Section: Introductionmentioning

confidence: 99%

Aims and tasks in parental caregiving for children receiving palliative care at home: a qualitative study

et al. 2017

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In paediatric palliative care (PPC), parents are confronted with increasing caregiving demands. More children are cared for at home, and the need for PPC of children is lengthened due to technical and medical improvements. Therefore, a clear understanding of the content of parental caregiving in PPC becomes increasingly important. The objective is to gain insight into parental caregiving based on the lived experience of parents with a child with a life-limiting disease. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with a malignant or non-malignant disease, receiving PPC. Based on their ambition to be a ‘good parent’, parents caring for a child with a life-limiting disease strived for three aims: controlled symptoms and controlled disease, a life worth living for their ill child and family balance. These aims resulted in four tasks that parents performed: providing basic and complex care, organising good quality care and treatment, making sound decisions while managing risks and organising a good family life. Conclusion: Parents need early explanation from professionals about balancing between their aims and the related tasks to get a grip on their situation and to prevent becoming overburdened. What is Known: • In paediatric palliative care, parents are confronted with increasing caregiving demands.• Parenting is often approached from the perspective of stress. What is New: • Parents strive for three aims: controlled symptoms and controlled disease, a life worth living for their child and family balance.• Parents perform four tasks: providing basic and complex care, organising good quality care, making decisions while managing risks and organising a good family life.• Professionals need insight into the parents’ aims and tasks from the parental perspective to strengthen parents’ resilience. Electronic supplementary materialThe online version of this article (doi:10.1007/s00431-016-2842-3) contains peer-reviewed but unedited supplementary material, which is available to authorised users.

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“…Healthcare professionals (HCP) play a pivotal role in involving teenagers in decisions about their care and treatment . Clinical teams work with both teenagers and their families in decision making, communicating information to them, seeking their opinions and incorporating these into treatment plans.…”

Section: Introductionmentioning

confidence: 99%

“…Healthcare professionals (HCP) play a pivotal role in involving teenagers in decisions about their care and treatment. 1,2 Clinical teams work with both teenagers and their families in decision making, communicating information to them, seeking their opinions and incorporating these into treatment plans. Yet, there has been little research on HCP real-time views of involving teenagers, how those views may Abbreviations: CNS, clinical nurse specialist; HCP, healthcare professionals; IC, Informal conversation; MDT, multi-disciplinary team; TYA, teenage and young adult This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.…”

Section: Introductionmentioning

confidence: 99%

“We just follow the patients’ lead”: Healthcare professional perspectives on the involvement of teenagers with cancer in decision making

Day¹,

Jones

Langner³

et al. 2017

Pediatric Blood & Cancer

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Purpose: We report on an in-depth interview and participant observation study that uses data from multiple sources to determine how the involvement of teenagers with leukaemia is understood and enacted in healthcare. In this article, we investigate healthcare professionals' (HCP) views of teenagers' involvement in decisions about their care and treatment for leukaemia. Methods:We conducted participant observation at 98 multi-disciplinary meetings and 95 openended, semi-structured interviews and informal conversations with clinical teenage cancer teams at one UK tertiary referral centre. Data were collected over a 9-month period, audio-recorded, transcribed verbatim and analysed using principles of grounded theory.Results: HCP revealed principles relating to the involvement of teenagers with leukaemia in decision making: (1) do the 'right thing' , (2) act on the care and treatment preferences of the teenager and (3) openly disclose information about the teenagers' condition. These principles were prioritised and utilised uniquely in each situation, reliant on three mediating factors: (1) family communication styles, (2) stage of illness and (3) nature of the disease. Conclusions:Specialist haematology teams are aware of the individual, and shifting and situational preferences of teenagers. They follow the lead which teenagers give them with regard to these preferences. If actual practice with regard to the involvement of teenagers is found to be wanting, this study refutes that this should be ascribed to insensitivity on the part of HCP about teenagers informational and decisional role preferences.

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Parents' Thoughts and Perceptions on Hearing that Their Child Has Incurable Cancer

Cited by 21 publications

References 36 publications

Prognostic Disclosures to Children: A Historical Perspective

Prognostic Disclosures to Children: A Historical Perspective

Aims and tasks in parental caregiving for children receiving palliative care at home: a qualitative study

“We just follow the patients’ lead”: Healthcare professional perspectives on the involvement of teenagers with cancer in decision making

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