Engaging Parents of Children Who Died From Cancer in Research on the Early Grief Experience

Snaman, Jennifer M.; Helton, Gabrielle; Baker, Justin N.; Morris, Sue; Al‐Sayegh, Hasan; Ma, Clement; Wolfe, Joanne

doi:10.1016/j.jpainsymman.2020.09.014

Cited by 15 publications

(17 citation statements)

References 25 publications

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“…Initial recruitment methods were modified on the basis of response rates and parental feedback. 21 The final recruitment strategy included a follow-up phone call/voicemail 1 week after the introductory letter to provide additional study details, offer an opportunity to opt out of participation, and confirm contact information. Parents were then sent a packet including 1-2 copies of the survey (on the basis of record of relationship status) along with a $10 gift card, a postcard written by bereaved parents involved in the study development, and addressed postage paid return envelopes.…”

Section: Methodsmentioning

confidence: 99%

“…Details on the survey development, recruitment, and enrollment for this study have been previously published. 21 Bereaved parents from the Quality-of-Life Steering Council at St Jude Children's Research Hospital (SJCRH) were involved in survey development, testing, and materials. The final survey comprised 195 total items inclusive of 11 validated tools (Box 1).…”

Section: Methodsmentioning

confidence: 99%

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Early Bereavement Psychosocial Outcomes in Parents of Children Who Died of Cancer With a Focus on Social Functioning

Snaman

Mazzola

Helton

et al. 2023

JCO Oncology Practice

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PURPOSE: The early grief experience of parents of children who died of cancer remains understudied. Understanding psychosocial symptomology and functioning of parents early in their bereavement is essential to developing supportive interventions aimed at offsetting poor mental and physical outcomes. METHODS: Parents of children from two centers who died of cancer 6 to 24 months before were mailed a survey that included validated tools and additional Likert scale-based questions. We used correlation and univariate and multiple regression analyses to assess the associations between psychosocial and grief outcomes and parental social functioning. RESULTS: One hundred twenty-five parents representing 88 children completed the survey. Most respondents identified as female (63%), White (84%), and non-Hispanic (91%). The mean time since child's death was 14.7 (range, 8-26) months. Bereaved parents' mean score for social functioning was only slightly below normative values, and most parents indicated post-traumatic growth and adaptive coping. Parents had high symptom levels for depression, anxiety, post-traumatic stress, and prolonged grief, with those identifying as female having significantly higher symptom scores. Using multivariate analysis, parental scores for resilience and continuing bonds were associated with higher social functioning scores and parental scores for depressive symptoms and prolonged grief were associated with lower social functioning scores. CONCLUSION: Although bereaved parents exhibit resilience and positive coping, they also show high levels of psychosocial distress in the first 2 years after their child's death, which may reflect the typical parental bereavement experience. Screening for low parental social functioning may identify parents who would benefit from additional support early in bereavement.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Early Bereavement Psychosocial Outcomes in Parents of Children Who Died of Cancer With a Focus on Social Functioning

Snaman

Mazzola

Helton

et al. 2023

JCO Oncology Practice

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“…In the setting of in-person meeting restrictions with the coronavirus pandemic, further studies are warranted to explore the impact of online support for bereaved parents. Response rates in parent bereavement studies are notably low, [24][25][26] which limits access to a comprehensive understanding of bereaved parent preferences for grief care. Recognizing the high number of families who were mailed a personalized invitation but did not engage in this participation warrants exploration about the reasons for not participating and potential barriers to engagement.…”

Section: Discussionmentioning

confidence: 99%

Actual Solidarity through Virtual Support: A Pilot Descriptive Study of an Online Support Group for Bereaved Parents

Weaver

Jurgens

Neumann

et al. 2021

Journal of Palliative Medicine

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Background: Hospital-based support for bereaved parents is regarded as best practice. Little is known about parental perceptions or programmatic potential of online grief support. Objectives: To learn from bereaved parent participants' experiences with an online support group to include perceptions of technology acceptance and group communication dynamics. Design: Descriptive study reporting on an eight-week online bereavement support group offered during summer 2020. Subjects and Setting: Inclusive of six bereaved parent participants in the Midwestern United States. Measurements: Post-intervention survey consisting of 49-items with the Technology Acceptance Model and Other Communicated Perspective-Taking Ability instruments embedded. Results: Five bereaved mothers and one father (mean age 32 years) residing an average 126 miles from hospital participated in an online support group in a timeframe seven months to one year from the death of their child. Intensity of grief emotion (5/6 parents) and physical distance (4/6 parents) were notable barriers to in-person visits to the hospital, where bereavement support was to be offered. Parents uniformly reported feeling benefit from the program and satisfaction with the program. Respondents self-reported gaining improved communication (4/6 parents), coping (3/6 parents), peer support (3/6 parents), education (3/6 parents), and emotional expression (3/6 parents). Mean scores on the technology acceptance and communication experiences scales were 4.7/5. The virtual format was an acceptable modality with perceived supportive interpersonal communication dynamics. Conclusion: Pediatric palliative care teams may consider the offering of online bereavement support groups. Further research is warranted on the impact and outcomes of online bereavement support groups for bereaved parents.

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“…Eligible participants were an English‐speaking parent/stepparent of a child who died from cancer 6 to 24 months prior to study participation and received care at DFCI or SJCRH. We selected this timeframe based on concerns regarding study burden and ability to participate earlier than 6 months from the death of a child 11,14 . Parents were identified using hospital deceased patient databases and mailed a survey in 2019–2020.…”

Section: Methodsmentioning

confidence: 99%

Mixed‐methods analysis of decisional regret in parents following a child's death from cancer

Feifer

Broden

Xiong

et al. 2023

Pediatric Blood & Cancer

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Background and objectivesDecisional regret is common in bereaved parents. We aimed to identify factors associated with and to explain patterns of parental decisional regret.MethodsWe used a convergent mixed‐methods design including quantitative items and free‐text responses from a survey of parents 6–24 months from their child's death from cancer. Parents expressed whether they had regrets about decisions during the end of their child's life (Yes/No/I don't know) and elaborated with free text. Results of qualitative content analysis of free‐text responses guided development and interpretation of quantitative multinomial models.ResultsParents (N = 123 surveys, N = 84 free text) primarily identified as White (84%), mothers (63%), and primary caregivers (69%) for their children. Forty‐seven (38%) parents reported decisional regret, 61 (49%) indicated no regret, and 15 (12%) were unsure. Mothers (relative risk [RR]: 10.3, 95%CI: [1.3, 81.3], p = .03) and parents who perceived greater suffering at the end of their child's life (RR = 3.8, 95%CI: [1.2, 11.7], p = .02) were at increased risk of regret; qualitative evaluation revealed elements of self‐blame and difficulty reconciling treatment choices with the ultimate outcome. Preparation for symptoms was associated with decreased risk of regret (RR = 0.1, 95%CI: [0, .3], p < .01) with qualitative reflections focused on balanced teamwork that alerted parents for what to expect and how to make meaningful final memories.ConclusionsThough decisional regret is common among cancer‐bereaved parents, mothers and those who perceive more suffering in their children may be at particular risk. Close collaboration between families and clinicians to prepare for symptoms and proactively attend to and minimize suffering may help alleviate decisional regret.

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Engaging Parents of Children Who Died From Cancer in Research on the Early Grief Experience

Cited by 15 publications

References 25 publications

Early Bereavement Psychosocial Outcomes in Parents of Children Who Died of Cancer With a Focus on Social Functioning

Early Bereavement Psychosocial Outcomes in Parents of Children Who Died of Cancer With a Focus on Social Functioning

Actual Solidarity through Virtual Support: A Pilot Descriptive Study of an Online Support Group for Bereaved Parents

Mixed‐methods analysis of decisional regret in parents following a child's death from cancer

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