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

Akard, Terrah Foster; Dietrich, Mary S.; Friedman, Debra L.; Gerhardt, Cynthia A.; Given, Barbara; Hendricks-Ferguson, Verna L.; Hinds, Pamela S.; Ridner, Sheila H.; Beckmann, Nicole; Gilmer, Mary Jo

doi:10.1080/09699260.2020.1826778

Cited by 26 publications

(15 citation statements)

References 41 publications

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“… 18 This discrepancy between quantitative and qualitative results has been seen in our previous work as well as on other main outcomes of this study reported elsewhere. 15 , 20 Previous studies have suggested that legacy interventions may improve emotional dimensions of QOL and communication. 12 , 15 The PedsQL may not be the best measure to capture effects of our intervention, and QOL as operationalized by the PedsQL may not be the exact outcome influenced by our intervention.…”

Section: Discussionmentioning

confidence: 99%

“…Parent-child communication is not only a key area for future research but also a key area of refinement needed for our intervention based on parent feedback that the intervention served as a communication tool and positive intervention effects on child-father communication. 20 The discrepancy between child and parent proxy reports regarding worry highlights the need for pediatric research to involve multiple informants, including children, mothers, and fathers. While it is not uncommon for pediatric palliative care studies to sample child-parent dyads, 2 , 21 or mothers and fathers of seriously ill children, 22 studies rarely have included reports directly from all three: ill children, mothers, and fathers, something critical to implementing effective family-centered palliative care interventions.…”

Section: Discussionmentioning

confidence: 99%

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Randomized Clinical Trial of a Legacy Intervention for Quality of Life in Children with Advanced Cancer

Akard

Dietrich

Friedman

et al. 2021

Journal of Palliative Medicine

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Background: Legacy-making (actions/behaviors aimed at being remembered) may be a significant component for quality of life (QOL) during advanced illness and end of life. Although legacy interventions have been tested in adults, the impact of legacy activities on QOL for children has yet to be clearly defined. Objective: This study examined the impact of our newly developed web-based legacy intervention on dimensions of QOL among children (7-17 years old) with advanced cancer. Design: This single-site randomized clinical trial (RCT) used a two-group waitlist control design. The legacy intervention guided children to create digital storyboards by directing them to answer legacy questions about themselves (personal characteristics, things they like to do, and connectedness with others) and upload photographs, video, and music. Setting/Subjects: Facebook advertisements recruited children (ages 7-17) with relapsed/refractory cancer and their parents from the United States. Child-parent dyads (N = 150) were randomized to the intervention or usual care group, and 97 dyads were included for analysis. Measurements: Children and parents completed the PedsQL Cancer Module preintervention (T1) and postintervention (T2). Results: Although not statistically significant, legacy-making demonstrated small effects in child procedural anxiety and perceived physical appearance (Cohen's d 0.35-0.28) compared to the wait-list control group. Conclusions: This study contributes important discoveries, including support for the feasibility of a RCT webbased legacy intervention for children with advanced cancer. We did not find convincing evidence supporting the hypothesis that legacy-making improved child dimensions of QOL across time. Overall, this is a null study that warrants discussion on possible reasons for limited findings. Future legacy intervention research is needed using qualitative and quantitative methods, as well as child and parent reports, to determine how such services may improve dimensions of QOL for pediatric palliative care populations. ClinicalTrials.gov number NCT04059393.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Randomized Clinical Trial of a Legacy Intervention for Quality of Life in Children with Advanced Cancer

Akard

Dietrich

Friedman

et al. 2021

Journal of Palliative Medicine

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“…Children near the end of life often desire to do or say things to be remembered, yet cognitive or verbal impairments can preclude these children from participating in services which facilitate documentation of their legacies [ [66] , [67] , [68] ]. Legacy-making has been explored in both adult and pediatric populations [ 32 , 33 , 66 , [68] , [69] , [70] , [71] , [72] ]. 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 [ 72 ].…”

Section: Discussionmentioning

confidence: 99%

“…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 [ 72 ]. Our work has shown that legacy-making can improve psychological distress, physical symptoms, and family components (quality of communication) among children with cancer (ages 7–17) and their parents [ 32 , 33 , 67 , 70 ].…”

Section: Discussionmentioning

confidence: 99%

Songwriting intervention for cognitively-impaired children with life-limiting conditions: Study protocol

Akard

Davis

Hills

et al. 2021

Contemporary Clinical Trials Communications

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Investigations evaluating the effectiveness of music-based interventions as a complementary approach to symptom management and health promotion for cognitively-impaired children with life-limiting conditions and their families are needed to minimize the physical and psychological burdens on individuals and their caregivers. Songwriting is one music-based strategy for a remote family-centered complementary approach to improve outcomes for cognitively-impaired children with life-limiting conditions, their parents, and families. The overall purpose of this study is to test the feasibility and preliminary efficacy of a songwriting intervention for cognitively-impaired children (ages 5–17 years) who are receiving palliative or complex care and their parents. Specific aims are to: (1) determine the feasibility of songwriting for cognitively-impaired children with life-limiting conditions and their parents, and (2) examine preliminary efficacy of songwriting for child psychological distress and physical symptoms, parent psychological distress, and family environment. The protocol for this 1-group pre-and post-intervention clinical trial ( N = 25) is described.

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“…3 Other results related to the webbased legacy intervention have been reported elsewhere. [24][25][26][27][28]…”

Section: Design and Methodsmentioning

confidence: 99%

Facebook Recruitment for Children with Advanced Cancer and Their Parents: Lessons from a Web-based Pediatric Palliative Intervention Study

Cho

Gilmer

Friedman

et al. 2021

Progress in Palliative Care

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Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can help address these recruitment challenges for pediatric palliative care clinical trials. This study (a) describes Facebook recruitment procedures targeting children with cancer and their parents for a pediatric palliative intervention randomized clinical trial, (b) reports recruitment results, and (c) discusses successful strategies to recruit pediatric populations via Facebook advertisements. Researchers used Facebook advertisements to recruit children with advanced cancer (aged 7-17 years) for a web-based legacy intervention. Between years 2015 and 2018, our research team enrolled 150 child-parent dyads (N = 300) to participate in the web-based legacy program. Results suggest that Facebook advertisements can be a successful tool to access and recruit pediatric populations with life-threatening conditions. Further research is needed to determine how innovative social-media recruitment strategies could be used in other populations of patients with serious illnesses and their caregivers to further advance the science in palliative care.

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

Cited by 26 publications

References 41 publications

Randomized Clinical Trial of a Legacy Intervention for Quality of Life in Children with Advanced Cancer

Randomized Clinical Trial of a Legacy Intervention for Quality of Life in Children with Advanced Cancer

Songwriting intervention for cognitively-impaired children with life-limiting conditions: Study protocol

Facebook Recruitment for Children with Advanced Cancer and Their Parents: Lessons from a Web-based Pediatric Palliative Intervention Study

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