Parental Perspectives of Communication at the End of Life at a Pediatric Oncology Institution

Snaman, Jennifer M.; Torres, Carlos; Duffy, Brian L.; Levine, Deena R.; Gibson, Deborah; Baker, Justin N.

doi:10.1089/jpm.2015.0253

Cited by 47 publications

(73 citation statements)

References 26 publications

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“…“What if” conversations should include an invitation for patients, even younger children, to participate in the way in which they feel most comfortable. Most pediatric patients want information provided to them by their healthcare provider and desire to directly participate in medical conversations . Additionally, most adolescent and young adults with cancer value receiving prognostic information, which is positively associated with aspects of well‐being .…”

Section: Broaching the Discussion And Determining Participantsmentioning

confidence: 99%

“…Those parents who reported being upset by prognostic disclosure attributed their distress to the difficult situation, and did not hold the clinician responsible . Parents note that communication between the physician, patient, and family must be honest and complete, especially around times of clinical change . Even when physicians empathetically and clearly discuss difficult news, the stress associated with receipt of bad news may prevent patients and families from meaningfully hearing and processing this information .…”

Section: Limitations Of Just‐in‐time Communicationmentioning

confidence: 99%

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“What if?”: Addressing uncertainty with families

Snaman

Feraco

Wolfe

et al. 2019

Pediatric Blood & Cancer

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Children with cancer and their families deal with uncertainty throughout their treatment course. Clinicians must help patients and families manage uncertainty by engaging them in discussions about their worries and fears. Too often, clinicians avoid or defer discussions about anticipated or worried‐about future events—the “what ifs.” Failing to engage in these conversations may lead to increased distress. We have developed a framework for having “what if” conversations with patients and families that enables providers to explore families’ informational and emotional needs. This framework may enable providers to improve families’ prognostic understanding, explore concerns, and examine preferences and goals of care.

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Section: Broaching the Discussion And Determining Participantsmentioning

confidence: 99%

Section: Limitations Of Just‐in‐time Communicationmentioning

confidence: 99%

“What if?”: Addressing uncertainty with families

Snaman

Feraco

Wolfe

et al. 2019

Pediatric Blood & Cancer

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“…The only variable at baseline associated with high peace of mind was “completely trusting the physician.” Fostering a healing relationship is a core function of communication in oncology, and one aspect of a strong therapeutic alliance is trust between the parent and physician . In pediatrics, this healing relationship is supported when clinicians communicate with sensitivity, honesty, and empathy . This relationship can also be supported by the provision of high‐quality information even if it is upsetting .…”

Section: Discussionmentioning

confidence: 99%

Persistently low peace of mind in parents of cancer patients: A five‐year follow‐up study

Sisk

Weng

Mack

2019

Pediatric Blood & Cancer

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Background Pediatric cancer affects the well‐being of the entire family. Previously, our group found that 76% of parents experience low peace of mind after diagnosis. Herein, we present a five‐year follow‐up study of these same parents, aiming to determine whether low peace of mind persisted, and what baseline variables associate with persistently low peace of mind. Procedure Cross‐sectional survey of parents of children with cancer between April 2004 and September 2005 within one year of diagnosis, and a follow‐up questionnaire administered at least five years later. Results Sixty‐six percent of parents whose children were living and who were able to be contacted completed follow‐up questionnaires (91/138). Of these parents, 77% (70/91) were parents of disease‐free survivors and 23% (21/91) had recurrent disease. The majority of parents (66%, 53/88) had low peace of mind five years after diagnosis, regardless of relapse status or prognosis. Additionally, 28% of parents of disease‐free survivors reported being very/extremely worried about relapse (18/66), late toxicities (19/66), and late effects (19/66). Each worry was associated with low peace of mind (OR between 9.66 and 20.09 for each worry). In bivariable logistic regression, low peace of mind at five years was negatively associated with trusting the physician completely at baseline, with and without adjustment for relapse status (OR, 0.32; 95% CI, 0.12 to 0.87, P = 0.032, adjusted for relapse). Conclusion Most long‐term studies and interventions have focused on parental bereavement. Our findings show that most parents are changed by pediatric cancer, even when children survive and the future is bright.

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“…Despite this, parents consistently identify a need for improved bereavement support, and they emphasize their deceased child's health care providers (HCPs) and medical institutions as integral sources of support throughout the grieving process . Parents highlight the importance of having institutional services to assist with the difficult transition from the primary medical center to the community either before (as in transferring to hospice care) or after the death of a child, and recognize a need for improved support at other times, including better anticipatory guidance to prepare for death and bereavement and the standardized provision of grief support services after the child's death …”

Section: Introductionmentioning

confidence: 99%

Helping parents live with the hole in their heart: The role of health care providers and institutions in the bereaved parents' grief journeys

Snaman

Kaye

Torres

et al. 2016

Cancer

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BACKGROUND Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with patients and families at the end of a child's life and after death profoundly affects parental grief, offering a unique opportunity for the medical community to positively impact the bereavement experience. The current study was conducted to explore the role of the health care team and medical institutions in the grief journeys of parents whose child died a cancer‐related death. METHODS Eleven bereaved parents participated in 2 focus groups. Responses to each of the 3 main prompts were coded and analyzed independently using semantic content analysis techniques. RESULTS Four main concepts were identified within the parental narratives, including the importance of strong and ongoing relationships between providers and bereaved families, the importance of high‐quality communication, the effect of negative experiences between providers and families on parental grief, and the importance of the institution's role in the grief journeys of bereaved parents. CONCLUSIONS Bereaved parents consistently identified the critical role played by medical staff and medical institutions throughout the grief journey. Key components of bereavement support identified by parents should serve to guide the actions of providers as well as provide a template for the development of a comprehensive bereavement program within an institution. Cancer 2016. © 2016 American Cancer Society. Cancer 2016;122:2757–2765. © 2016 American Cancer Society.

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Parental Perspectives of Communication at the End of Life at a Pediatric Oncology Institution

Cited by 47 publications

References 26 publications

“What if?”: Addressing uncertainty with families

“What if?”: Addressing uncertainty with families

Persistently low peace of mind in parents of cancer patients: A five‐year follow‐up study

Helping parents live with the hole in their heart: The role of health care providers and institutions in the bereaved parents' grief journeys

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