Legacy Artwork in Pediatric Oncology: The Impact on Bereaved Caregivers' Psychological Functioning and Grief

Schaefer, Megan R.; Spencer, Sarah K; Barnett, Matthew; Reynolds, Nina; Madan‐Swain, Avi

doi:10.1089/jpm.2018.0329

Cited by 21 publications

(33 citation statements)

References 18 publications

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“…The current literature also lacks evidence about how legacy making is presented to parents. 3 In this study, most bereaved parents heard about the MTHS program from a physician or therapist. However, given the time spent and bond formed between patients and their bedside nurses, this study suggests education of nurses about legacy making and the MTHS program may allow more families to benefit from it.…”

Section: Discussionmentioning

confidence: 88%

“…Many studies have looked at legacy making specifically in pediatric oncology patients. 3,19,22,24 However, this study involves patients who died from both oncologic and nononcologic conditions allowing for more generalizability of the positive effect of legacy making to all patients undergoing end-of-life care.…”

Section: Discussionmentioning

confidence: 99%

“…Multiple sources have asserted that the grief related to the loss of a child is more severe than that of a spouse or other family member. [1][2][3][4][5][6][7] Several studies have reported that between 12% to 63% of bereaved parents experience prolonged grief, [8][9][10] defined as intense sorrow and yearning lasting longer than six months or a year that leads to functional impairment in one's life. 11,12 Given the severity of bereaved parent grief, the need for a multidisciplinary approach to aid parents and families in the grieving process is of paramount importance.…”

Section: Introductionmentioning

confidence: 99%

“…Compared with the control, parents that participated in the artwork project reported fewer symptoms of prolonged grief and a greater sense of support from the hospital. 3,4 Recent pediatric research has focused on the effect of legacy making on children and its effect on the family as a whole. [20][21][22] In addition, the rise of technology has allowed for the creation of new and innovative ways to create legacy items.…”

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Legacy Building in Pediatric End-of-Life Care through Innovative Use of a Digital Stethoscope

Andrews

Hayes

Cerulli

et al. 2020

Palliative Medicine Reports

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Background: Legacy making has been the focus of recent literature; however, few studies examine how legacy making affects bereaved parents. Objective: To better understand legacy making's effect on bereaved parents, this study examined (1) the presentation of legacy making to parents, (2) parent satisfaction, and (3) parent utilization of the project. Design: Eko CORE (Eko Devices, Inc., Berkeley, CA), a digital stethoscope that generates a phonocardiogram, a graphical representation of S1 and S2 heart sounds, was used to record children's heartbeats as they approached end of life. The heartbeat was then overlaid to a song or voice recording or kept as a stand-alone file. An artistic embellishment of the phonocardiogram was also created. Parents were surveyed about their experience with the Music Therapy Heart Sounds (MTHS) program. Twelve parents completed the survey. Setting/subjects: Tertiary care children's hospital. The subjects were bereaved parents. Measurements: Five-question survey. Institutional Review Board review exempt. Results: All respondents would recommend the MTHS program to other families experiencing end-of-life decision making. Forty-two percent (N = 5) heard about the program from pediatric palliative physicians, and 50% (N = 6) heard about it from therapists such as music or child life. The respondents varied in how often they utilized their child's heartbeat recordings: 25% (N = 3) viewed or listened monthly, 33% (N = 4) not at all, 17% (N = 2) almost weekly, 17% less than monthly, and 8% (N = 1) daily. Conclusion: The MTHS program is an easy-to-implement and cost-effective way to perform legacy making that bereaved parents recommend for other families.

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Section: Discussionmentioning

confidence: 88%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Legacy Building in Pediatric End-of-Life Care through Innovative Use of a Digital Stethoscope

Andrews

Hayes

Cerulli

et al. 2020

Palliative Medicine Reports

View full text Add to dashboard Cite

show abstract

“…Legacymaking has been explored in both adult and pediatric populations. [20][21][22][23][24][25][26][27][28][29][30][31][32] Legacy-making in adults has been shown to increase patients' sense of dignity, purpose, meaning, and will to live, while decreasing suffering and depressive symptoms. 22,28,32 In our previous work, hospital staff and parents reported that legacymaking improved quality of life (QOL), communication, and coping among children with cancer (ages 7-17).…”

Section: Introductionmentioning

confidence: 99%

Improved parent–child communication following a RCT evaluating a legacy intervention for children with advanced cancer

Akard

Dietrich

Friedman

et al. 2020

Progress in Palliative Care

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Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication. We examined the impact of a web-based legacy intervention on parent-child communication. Facebook advertisements were used to recruit families of children (ages 7-17) with relapsed/refractory cancer. Parent-child dyads were randomly assigned to the intervention or usual care group. The intervention website guided children to create digital storyboards over 2 weeks by directing them to answer legacy questions about themselves and upload photographs, videos, and music. Families received a copy of the child's final digital story. Children and parents completed the Parent-Adolescent Communication Scale pre-(T1) and post-intervention (T2). Linear regressions tested for differences in change from T1 to T2 between the groups controlling for T1 values using an alpha of P<0.05. Intervention effects were measured using Cohen's d. Ninety-seven parent-child dyads were included for analysis. Changes in parent-child communication were not statistically significantly different between the groups, yet meaningful intervention effects were observed. The strongest effects were observed for improving father-child communication (Cohen's d = −0.22-0.33). Legacy-making shows promise to facilitate improved parent-child communication, particularly for fathers. Clinical Trials Registry: Number NCT04059393.

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A quest for meaning: A qualitative exploration among children with advanced cancer and their parents

et al. 2020

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Objective Meaning‐making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning‐making among pediatric populations with advanced illness to understand how this process unfolds before the child's death. This study explores meaning‐making pre‐bereavement among children with advanced cancer and their parents. Methods As part of a larger study examining shared decision‐making near the end of life, 24 children with advanced cancer and/or high‐risk cancer, 26 mothers, and 11 fathers participated in individual, semi‐structured interviews. Analyses focused on questions regarding meaning‐making. Four coders analyzed the data via directed content analysis. Results Three major meaning‐making themes emerged: (1) sense‐making (i.e., unknown, no sense/meaning, religious/spiritual explanations, scientific explanations), (2) benefit‐finding, and (3) purpose/legacy. Some stated they were unable to make sense of the diagnosis, because there was no reason, they were not there yet, or they were dealing with the situation and moving forward. Others reported finding meaning through spiritual and scientific explanations. Many identified benefits related to the child's illness, such as personal growth and stronger relationships. Some parents expressed their purpose in life was to live for their children, while others shared their child's legacy as a way to find meaning. Conclusions Our findings highlight the struggle children and parents often face when attempting to make sense of the child's advanced or high‐risk illness. Clinicians might consider if meaning‐centered interventions designed for use in adults at the end of life and bereaved parents may be helpful for children with advanced or high‐risk cancer and their parents.

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Legacy Artwork in Pediatric Oncology: The Impact on Bereaved Caregivers' Psychological Functioning and Grief

Cited by 21 publications

References 18 publications

Legacy Building in Pediatric End-of-Life Care through Innovative Use of a Digital Stethoscope

Legacy Building in Pediatric End-of-Life Care through Innovative Use of a Digital Stethoscope

Improved parent–child communication following a RCT evaluating a legacy intervention for children with advanced cancer

A quest for meaning: A qualitative exploration among children with advanced cancer and their parents

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