Adapting the Portuguese dignity question framework for adolescents: ages 10–18

Abstract

ObjectiveDignity therapy (DT) is well established in adult populations, and it is likely that it could benefit younger people. This study aimed to adapt the adult Portuguese DT question framework for adolescents (DT-QF-Adol) (ages 10–18).MethodFive stages were followed: (1) the Portuguese DT-QF for adults was adapted for adolescents with the original author's collaboration, (2) an expert committee provided feedback on the adapted version, (3) an initial consensus version of the DT-QF-Adol was created, (4) expert committee consult affirmed final consensus, and (5) validation stage with a sample of 17 adolescents followed in ambulatory psychology clinic.ResultsDT's original author endorsed the final Portuguese DT-QF-Adol, reinforcing that it captures the fundamental dimensions of DT. There was 100% agreement on the final consensus version and defined age group (10–18 years old). Twenty adolescents were invited to participate, and 17 were included after informed consent was obtained; 53% were female. The average age was 12.7 years. The interviewed adolescents reported that the DT-QF-Adol was clear, and they did not identify any ambiguity or difficulty in answering any of the questions. They assumed that this information could positively affect the way parents and friends see and cared for them, permitting others to understand their concerns and preferences. Participants felt that the DT-QF-Adol could be a good starting point for a conversation with their loved ones. Although they did not consider vital for health professionals to access their answers, they strongly felt that the DT-QF-Adol might be essential to sick adolescents and they would recommend it to others.Significance of resultsWe developed a DT-QF of nine questions for Portuguese adolescents (DT-QF-Adol), coined Protocolo de Perguntas da Terapia da Dignidade para Adolescentes — 10–18 anos. This tool can potentially be considered a good addition for pediatric palliative care.

Dignity Therapy – Past, present and future journey: Beyond end of life cancer care. Responding to Grassi et al.

“…Last but not least -as Psycho-Oncology focuses on all aspects of every individuals' experience with cancer throughout their whole lifespan, from diagnosis to treatment, during the end of life, and after death -DT has, once more, gained new possibilities and clinical and research "wings". It was already adapted to be integrated into care plans for terminally-ill children and adolescents, 13,14 and most recently, adapted to be posthumously used by those grieving and honouring their deceased, providing a means for the bereaved to assuage their grief. 15 In conclusion -looking at the past, the present and most importantly to DT's future -we believe the inner strength DT holds, resides in its capacity to find each patient's personhood beyond patienthood and still conscientious that personhood is soluble in patienthood.…”

Stakeholder Perceptions of Dignity Therapy for Children and Young People with Life-Limiting and Life-Threatening Conditions in the UK

“…Since the publication of our review, Juliao et al [21] have published their work on adapting the DTQP for adolescent's aged 10 to 18 years in Portugal. They have developed an amended DT set of questions which could be used in practice for sick Portuguese adolescents.…”

Dignity, Memory, and Final Wishes of Dying Children

“…Julião et al reported a revised version of DT for adolescence, positing several metaphors and tasks to make it more developmentally appropriate. 3 Although this adaptation was based on input from a qualified expert panel, it has yet to be implemented. Schuelke and Rubenstein's study: https://www.liebertpub.com/doi/10.1089/ pmr.2020.0015 offers important insights, suggesting that DT, revised to meet the needs of dying children and adolescents, has a place within the pediatric palliative care therapeutic armamentarium.…”

“…documents of adolescent patients. 3 Sixteen-year-old Miracle Akbar held a party at which she read her generativity document, whereas Shahd Shahroor had her document translated into her family's native tongue of Arabic and took great pride in the document being used for educational purposes. Although perhaps motivated by altruism, her reaction also suggests comfort in knowing her story will be told.…”