ArticleBMJ supportive & palliative care2019
Paediatric advance care planning survey: a cross-sectional examination of congruence and discordance between adolescents with HIV/AIDS and their families.
Article in BMJ supportive & palliative care, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT01289444 (Longitudinal Pediatric Palliative Care), which is not on this map. Cited by 13 papers.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle
Who cites it
13 citing papers in PubMed.
- An Intervention in Congruence for End-of-Life Treatment Preference: A Randomized Trial.Pediatrics · 2022Trial
- FAmily-CEntered (FACE) Advance Care Planning Among African-American and Non-African-American Adults Living With HIV in Washington, DC: A Randomized Controlled Trial to Increase Documentation and Health Equity.Journal of pain and symptom management · 2019Trial
- Advance Care Planning and HIV Symptoms in Adolescence.Pediatrics · 2018Trial
- Shared Decision-Making Within Families About Returning to Sport After Recovery From Concussion: Exploring Parent and Adolescent Perspectives.The Journal of adolescent health : official publication of the Society for Adolescent Medicine · 2026Article
- How are agency and autonomy understood in children's palliative and end-of-life care?: A narrative review.Palliative care and social practice · 2026Review
- Between Home and Hospital: Is There an Optimal Location of Death for the Dying Child?Acta paediatrica (Oslo, Norway : 1992) · 2025Article
- Advance care planning in Hispanic populations with Parkinson's Disease: Investigating disparities in end-of life care.Clinical parkinsonism & related disorders · 2025Article
- Acceptance of advance care planning and influencing factors from the perspective of the life cycle: a cross-sectional study.BMC palliative care · 2024Article
- Challenges in Pediatric Home-Based Hospice and Palliative Care: A Case Series.Journal of pain and symptom management · 2024Article
- Palliative care for adolescents and young adults with advanced illness: A scoping review.Palliative medicine · 2023Article
- What Do Adults With HIV Want? End-of-Life Care Goals, Values and Beliefs by Gender, Race, Sexual Orientation.The American journal of hospice & palliative care · 2021Article
- Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals, and Beliefs About End-of-Life Care.JAMA network open · 2020Article
- "Will You Remember Me?": Talking with Adolescents About Death and Dying.Child and adolescent psychiatric clinics of North America · 2018Article
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Authors and funding
8 authors.
Funding
Abstract
objectivesTo identify patient-reported paediatric advance care planning (pACP) needs of adolescents living with HIV and to examine the congruence with their family's perception of their needs.
methodsA cross-sectional survey among six paediatric hospital-based outpatient HIV specialty clinics. Participants included 48 adolescent/family dyads (n=96 participants) within a larger study facilitating pACP. The main outcome measure was the Lyon Advance Care Planning Survey - Adolescent and Surrogate Versions-Revised.
resultsAdolescents' mean age was 18 years (range ≥14-<21); 54% male; 92% African-American; 27% with prior AIDS diagnosis. If dying, 92%
conclusionsAreas of discordance were associated with life-sustaining choices and when to have the EOL conversation. Targeted, adolescent/family-centred, evidence-based pACP interventions are needed to improve family understanding of youth's EOL wishes. TRIAL REGISTRATION NUMBER: NCT01289444; Results.
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