Bereaved mothers’ and fathers’ perceptions of a legacy intervention for parents of infants in the NICU

Akard, Terrah Foster; Duffy, Mary Lou; Hord, A; Randall, A; Sanders, Alexis Y.; Adelstein, Katharine E.; Anani, Uchenna E.; Gilmer, Mary Jo

doi:10.3233/npm-181732

Cited by 28 publications

(42 citation statements)

References 26 publications

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“…42,56–58 Similarly, caregivers of adult patients and parents of pediatric patients shared acceptance of and interest in participating in legacy interventions with their seriously ill loved ones, seeing value both for their own coping and that of the patient. 56–58…”

Section: Resultsmentioning

confidence: 99%

“…Akard et al, 57 USA Mixed methods RCT using the Personal Orientation Inventory and descriptive evaluation No statistically significant differences between the two groups before or after the sessions, but the life review group felt the sessions increased their self-actualization through concern for others. enhancing patient sense of value and dignity, promoting effective interaction, and attending to unfinished business.…”

Section: Bmentioning

confidence: 99%

“…37,45,71 Additionally, adult patients and families, as well as the parents/caregivers of pediatric patients, consistently report legacy interventions to be desirable, feasible, and beneficial to themselves and their family members. 9,30,33,42,[56][57][58][59]61,65,66,68,69,72,75 Whether the legacy intervention is facilitated by a nurse, Certified Child Life Specialist, 4,7,8 chaplain, 26,44,45 psychologist, 39,46 or trained volunteer, 5 the articles included in this review indicate that patients and families report positive experiences.…”

Section: Main Findingsmentioning

confidence: 99%

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Legacy perceptions and interventions for adults and children receiving palliative care: A systematic review

Boles

Jones

2021

Palliat Med

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Background: Legacy has been invoked as a means for strengthening human attachments, continuing bonds, and ensuring that individuals will be remembered; however, little is known about the spectrum of approaches to, outcomes associated with, and best practices for legacy interventions. Aim: To systematically review research on legacy perceptions and interventions in pediatric and adult palliative care recipients. Design: A systematic mixed studies review synthesizing quantitative, qualitative, and mixed-methods study findings using PRISMA guidelines. Data sources: PubMed, PsycINFO, and CINAHL databases were searched on October 1, 2020. GRADE criteria were used to assess quality of quantitative reports, and the Johns Hopkins Evidence Level and Quality Guide was used to rate qualitative, mixed methods, and review articles. Data were synthesized using integrative thematic analysis. Results: The 67 studies reviewed describe a variety of legacy perceptions and interventions with adult and pediatric patients receiving palliative care. Statistically significant improvements in various dimensions of wellbeing are documented, with significant reduction in incidence and symptoms of depression in adults. Studies highlight the utility, feasibility, and perceived benefits of legacy interventions according to adult patients and their caregivers, and parents/caregivers of pediatric patients. Conclusions: Though future research with high-quality, experimental designs is needed, the positive outcomes associated with legacy interventions are documented in adult patient populations; additionally, the application of legacy interventions for children with serious illnesses receiving palliative care is reasonable based on the existing body of evidence. A consistent and operational concept of legacy is still needed for future research and practice.

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Section: Resultsmentioning

confidence: 99%

Section: Bmentioning

confidence: 99%

Section: Main Findingsmentioning

confidence: 99%

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Legacy perceptions and interventions for adults and children receiving palliative care: A systematic review

Boles

Jones

2021

Palliat Med

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“…However, to date no studies have been published confirming these results, with this remaining a potential future subject of research. Finally, although with fewer references, mention should also be made of the intervention involving periodic telephone calls during the first year of the bereavement process (Akard et al 2018;Covington 2009;DiMarco et al 2001;Gibson et al 2011;Levick et al 2017;Reilly-Smorawski et al 2002;Roose & Blanford 2011). This was also considered a good way of assisting parents in the grieving process and one which they appreciate as it demonstrates the continued concern about their well-being.…”

Section: Discussionmentioning

confidence: 99%

Nursing interventions for perinatal bereavement care in neonatal intensive care units: A scoping review

Pueyo

Alonso

Botigué

et al. 2021

International Nursing Review

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Background: Despite technological advances and specialist training of neonatal teams, perinatal deaths still occur. Such events are traumatic experiences for the parents and increase the risk of pathological grieving. Nursing is one of the main sources of support. However, the important work of nurses in these situations is made more difficult by the lack of recognized strategies that can be implemented to assist parents and family members in the bereavement process. Aim: Identify nursing interventions to help parents of neonates admitted to neonatal intensive care units cope with perinatal loss. Methods: A scoping review based on the methodological framework established by Arksey and O'Malley was used. A total of 327 relevant studies were identified through a bibliographic search in Pubmed, CINAHL Plus, APA PsycNET and Scopus between 2000 and 2019. The screening process included an initial analysis of the relevance of the abstract and, when required, an extensive review of the full paper. Results: A total of 9 papers were finally selected which responded to the research question. All nine papers are from the USA and have different methodological characteristics. A number of effective interventions were identified, including legacy creation, support groups, family-centred accompaniment and follow-up, parental involvement in pre-mortem care, intergenerational bereavement programmes, and the use of technological and spiritual resources. Conclusion:In general, the scant evidence that is available about nursing interventions around perinatal bereavement care underlines the requirement to thoroughly assess the effectiveness of those that have already been designed and implemented. Implications for nursing practice and policy: This scoping review contributes to the potential implementation of effective interventions to deal with and help parents and family members cope with perinatal bereavement, with nursing staff as the main source of support and leading interventions which have family members in the care team. This review also makes a substantial contribution to the development of a practical and evidence-based clinical guide for nursing, with recommendations that can be adapted to effective quality care criteria. It is additionally intended to encourage visibility in health policies of care and attention to perinatal grief in neonatal intensive care units.

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“…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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Bereaved mothers’ and fathers’ perceptions of a legacy intervention for parents of infants in the NICU

Abstract: Participants reported that a legacy-making intervention via digital storytelling would be feasible, acceptable, and beneficial for NICU parents. Study results support the need and desire for legacy-making services to be developed and offered in the NICU.

Cited by 28 publications

References 26 publications

Legacy perceptions and interventions for adults and children receiving palliative care: A systematic review

Legacy perceptions and interventions for adults and children receiving palliative care: A systematic review

Nursing interventions for perinatal bereavement care in neonatal intensive care units: A scoping review

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

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