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Operationalizing dignity therapy for adolescents

Published online by Cambridge University Press:  30 July 2020

Miguel Julião*
Affiliation:
Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Sintra, Portugal
Ana Santos
Affiliation:
Serviço de Psiquiatria da Infância e Adolescência, Hospital Professor Doutor Fernando da Fonseca, Amadora, Portugal PIN – Progresso Infantil, Lisboa, Portugal
Sara Albuquerque
Affiliation:
PIN – Progresso Infantil, Lisboa, Portugal
Bárbara Antunes
Affiliation:
Primary Care Unit – Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK Centro de Estudos e Investigação em Saúde da Universidade de Coimbra, Porto, Portugal Faculty of Medicine, University of Porto, Porto, Portugal King's College London, Department of Midwifery and Palliative Care, Florence Nightingale School of Nursing, London, UK
Margarida Crujo
Affiliation:
Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Sintra, Portugal
Maria Ana Sobral
Affiliation:
Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Sintra, Portugal
Cândida Cancelinha
Affiliation:
Equipa Intra-hospitalar de Suporte em Cuidados Paliativos Pediátricos, Centro Hospitalar e Universitário de Coimbra, Coimbra, Portugal Faculdade de Medicina da Universidade de Coimbra, Coimbra, Portugal
Duarte da Silva Soares
Affiliation:
Departamento de Cuidados Paliativos da Unidade Local de Saúde do Nordeste, Bragança, Portugal
Emília Fradique
Affiliation:
Equipa Intra-hospitalar de Suporte em Cuidados Paliativos Pediátricos, Hospital de Santa Maria, Centro Hospitalar Universitário Lisboa Norte, Lisboa, Portugal Faculdade de Medicina de Lisboa, Lisboa, Portugal
Maria João Palaré
Affiliation:
Equipa Intra-hospitalar de Suporte em Cuidados Paliativos Pediátricos, Hospital de Santa Maria, Centro Hospitalar Universitário Lisboa Norte, Lisboa, Portugal Faculdade de Medicina de Lisboa, Lisboa, Portugal
Harvey Max Chochinov
Affiliation:
Department of Psychiatry, Research Institute of Oncology and Hematology, Cancer Care Manitoba, Winnipeg, MB, Canada
*
Author for correspondence: Miguel Julião, Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Sintra, Portugal. E-mail: [email protected]
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Abstract

Type
Letter to the Editor
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

Dear Editor: Dignity Therapy (DT) is a brief, individualized intervention, which provides terminally ill patients with an opportunity to convey memories and essential disclosures that culminate in a legacy document. DT often broaches psychosocial and existential issues, hence bolstering a sense of meaning and purpose (Chochinov et al., Reference Chochinov, Hack and Hassard2005). During DT, trained therapists guide a psychotherapeutic session based on a framework of questions developed from key tenets of the Dignity Model (Chochinov et al., Reference Chochinov, Hack and McClement2002). DT is presently well established in adult populations, but its application to younger people has received little attention (Rodriguez et al., Reference Rodriguez, Smith and McDermid2018; Julião et al., Reference Julião, Antunes and Santos2020). To address this gap, Julião and colleagues adapted the Portuguese DT question framework to make it applicable to adolescents (ages 10–18) (Julião et al., Reference Julião, Antunes and Santos2020).

To operationalize the revision of DT for adolescents (DT-QF-Adol) two investigators (A.S. and S.A.), both children psychologists working with children and adolescents experiencing grief and loss, developed various facilitating techniques consisting of various metaphors, tasks, and support phrases. Their aim was to better enable clinicians to carry out DT-QF-Adol and make it more suitable and engaging for adolescent patients facing life-threatening or life-limiting conditions. These facilitative techniques, summarized in Table 1, were submitted to an expert committee panel familiar with DT, comprised of three adult and pediatric palliative care physicians (M.J., M.A.S., D.S.S.), two pediatric palliative care physician (C.C., M.J.P.), one pediatric palliative care nurse (E.F.), one adult psychologist (B.A.), and one child psychiatrist (M.C.). Panel members were asked to provide feedback regarding the following: (a) overall approval of the initial DT-QF-Adol revisions; (b) belief that the metaphors, tasks, and support phrases would clarify and facilitate the revised question framework; (c) believe that the techniques summarized in Table 1 captured fundamental dimensions of personhood and dignity for adolescents and their lived experience; (d) clarity, comprehensibility, and ambiguity; and (e) other comments, amendments or revisions to better operationalize DT-QF-Adol.

Table 1. The Portuguese Dignity Question Framework for Adolescents — additional supporting table

English translations are merely indicative for readers to understand.

After receiving all the expert input, a final consensus version of the table was created with more than 90% agreement. A linguistic expert was consulted, and no changes were deemed necessary. The final consensus table was then sent to the originator of DT (H.M.C.), who agreed that this additional tool could be useful in supporting DT interviews and that its content captured the fundamental elements of the Dignity Model itself.

We believe that these additional techniques will help, both for clinicians and researchers engaged in palliative care. Next steps will be to recruit adolescent patients approaching death, in order to determine the feasibility, acceptability, and efficacy of DT-QF-Adol, informed by these facilitative techniques uniquely designed for this unique and often understudied patient population.

Acknowledgments

Bárbara Antunes is funded by the National Institute for Health Research (NIHR) Applied Research Collaboration East of England (ARC EoE) programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

Author's Contributors

M.J., A.S., S.A., and B.A. were responsible for the conception and design. M.J., A.S., S.A., B.A., M.C., M.A.S., D.S.S., C.C., E.F., M.J.P., and H.M.C. were responsible for supervising the study's protocol, analyzing and writing the final manuscript. All co-authors supervised the final analysis, revision of the final report and had full access to all of the data.

References

REFERENCES

Chochinov, HM, Hack, T, McClement, S, et al. (2002) Dignity in the terminally ill: A developing empirical model. Social Science & Medicine 54(3), 433–43.CrossRefGoogle ScholarPubMed
Chochinov, HM, Hack, T, Hassard, T, et al. (2005). Dignity therapy: A novel psychotherapeutic intervention for patients near the end of life. Journal of Clinical Oncology 23(24), 55205525.CrossRefGoogle ScholarPubMed
Julião, M, Antunes, B, Santos, A, et al. (2020) Adapting the Portuguese dignity question framework for adolescents: Ages 10-18. Palliative and Supportive Care 18(2), 199205.CrossRefGoogle ScholarPubMed
Rodriguez, A, Smith, J and McDermid, K (2018) Dignity therapy interventions for young people in palliative care: A rapid structured evidence review. International Journal of Palliative Nursing 24(7), 339349.CrossRefGoogle ScholarPubMed
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Table 1. The Portuguese Dignity Question Framework for Adolescents — additional supporting table