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Acceptability of Family-Centered Advanced Care Planning for Adolescents With HIV.

ABSTRACT: BACKGROUND AND OBJECTIVE:Small pilot studies support the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). We do not yet know if pACP is acceptable, feasible, and worthwhile, even if emotionally intense, in a fully powered randomized controlled trial. METHODS:We conducted a prospective 2-arm randomized controlled trial at 6 US urban hospitals. Adolescent/family member dyads were randomized to receive the 1-session-a-week 3-session FAmily-CEntered Advance Care Planning (FACE) pACP intervention (1, ACP Survey; 2, Goals of Care Conversation/Treatment Preferences; 3, Completion of Advance Directive) or active comparator (1, Developmental History; 2, Safety Tips; 3, Nutrition/Exercise). The Satisfaction Questionnaire was administered to participants independently after each session by a blinded research assistant. RESULTS:We enrolled 53% of eligible participants and intervened with 97 adolescent/family dyads. Adolescents ranged in age from 14 to 21 years; 54% were male individuals; 93% African American; and 73% perinatally infected. Attendance was 99% for all 3 sessions in each arm. At session 3, FACE adolescents and family dyad members, respectively, found the session useful (98%, 98%) and helpful (98%, 100%), despite feelings of sadness (25%, 17%). FACE adolescents' improvement in the total subscale A score (useful, helpful, like a load off my mind, satisfied, something I needed to do, courageous, worthwhile) was better than control adolescents at session 3 (? = 1.16, P = .02). There were no adverse events. CONCLUSIONS:FACE enabled worthwhile conversations, while simultaneously eliciting intense emotions. No participants withdrew, 99% of those enrolled completed each session, and there were no adverse events, evidence of pACP's feasibility, acceptability, and safety.

SUBMITTER: Dallas RH

PROVIDER: S-EPMC5127070 | biostudies-literature | 2016 Dec

REPOSITORIES: biostudies-literature

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Acceptability of Family-Centered Advanced Care Planning for Adolescents With HIV.

Dallas Ronald H RH Kimmel Allison A Wilkins Megan L ML Rana Sohail S Garcia Ana A Cheng Yao I YI Wang Jichuan J Lyon Maureen E ME

Pediatrics 20161101 6

<h4>Background and objective</h4>Small pilot studies support the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). We do not yet know if pACP is acceptable, feasible, and worthwhile, even if emotionally intense, in a fully powered randomized controlled trial.<h4>Methods</h4>We conducted a prospective 2-arm randomized controlled trial at 6 US urban hospitals. Adolescent/family member dyads were randomized to receive the 1-se ...[more]

PMID: 27940700

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Project description:BackgroundFew evidence-based psychosocial programs have been tested among adolescents and young adults (AYAs) with advanced cancer (AC), and early advance care planning (ACP) in this population is rare. The authors aimed to determine the feasibility and acceptability of 1) delivering an established resilience-coaching program, and 2) integrating ACP into that program, among AYAs with AC.MethodsEligible AYAs were 12 to 24 years old, diagnosed with advanced cancer (recurrent/refractory disease or a diagnosis associated with <50% survival) and fluent in English. The Promoting Resilience in Stress Management-Advanced Cancer (PRISM-AC) program included PRISM's standard sessions targeting stress-management, goal-setting, cognitive-restructuring, and meaning-making, delivered 1:1, 1 to 2 weeks apart, plus a new session involving elements of the AYA-specific Voicing My Choices ACP guide. Participants completed surveys at baseline and 12 weeks, and exit interviews following study completion. Feasibility was defined as ≥70% completion of 1) standard 4-session PRISM and 2) the new ACP session among those completing standard PRISM. Acceptability was defined qualitatively. Trajectories of patient-reported anxiety, depression, and hope were examined descriptively.ResultsOf 50 eligible, approached AYAs, 26 (52%) enrolled and completed baseline surveys. The AYAs had a mean age of 16 years (SD = 2.7 years), and the majority were male (73%) and White/Caucasian (62%). Twenty-two AYAs (85%) completed standard PRISM, and of those, 18 (82%) completed the ACP session. Feedback was highly positive; 100% and 91% described the overall and ACP programs as valuable, respectively. Anxiety, depression, and hope were unchanged after the program.ConclusionsResilience coaching followed by integrated ACP is feasible and acceptable for AYAs with AC. Participating did not cause distress or decrease hope.Lay summaryAdvance care planning (ACP) among adolescents and young adults (AYAs) with advanced cancer can be difficult to introduce. We investigated whether it is feasible and acceptable to integrate ACP into an existing resilience-coaching program for AYAs. In this cohort study of 26 AYAs with advanced cancer, we found the Promoting Resilience in Stress Management-Advanced Cancer program to be feasible (≥70% intervention-completion) and highly acceptable (positive post-participation feedback, no evidence of participant-distress). We conclude that an intervention integrating resilience coaching and ACP is feasible and acceptable among AYAs with advanced cancer.

Project description:BackgroundAlthough advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a process of behaviour change. We aimed to develop and test the acceptability and feasibility of BOOST pACP (Benefits of Obtaining Ownership Systematically Together in paediatric Advance Care Planning) - an intervention to improve ACP in adolescents with cancer, their parents and paediatric oncologists.MethodsSeveral methods informed the intervention development process: 1) Problem identification: interviews with 11 healthcare professionals working in paediatric oncology; 2) Identification of evidence: literature review of existing pACP tools and barriers and facilitators in performing pACP; 3) Logic model and 4) Intervention design: collaborative expert meetings with researchers and professionals in pACP; 5a) Acceptability test of the materials: interviews with nine healthcare professionals, four adolescents and young adults with cancer and six parents; 5b) Feasibility test of core intervention components with three families, including interviews about their experiences.ResultsThe BOOST pACP intervention was iteratively developed and adapted, based on feedback from families, healthcare professionals, and pACP experts (e.g., components were changed, deleted, and added; formulation of themes and associated questions were amended to enhance acceptability). The core components of the BOOST pACP intervention include: four ACP conversation sessions with the adolescent and/or parent(s) provided by a trained facilitator, structured by interactive conversation cards covering different ACP themes, followed by a transfer of information from the intervention facilitator to the paediatric oncologist. Core intervention components were deemed feasible by all participating families.ConclusionThe BOOST pACP intervention was developed by close involvement of both adolescent patients and their parents, healthcare professionals and pACP experts. The final intervention and supporting materials are considered appropriate and feasible. Its effectiveness in improving parent-adolescent communication on ACP themes is currently being tested in a multi-centre randomised controlled trial. Researchers aiming to develop a complex psychosocial intervention for a vulnerable target group could use the step-by-step approach described in this paper.

Project description:BACKGROUND:Preventing unintended pregnancies among HIV positive women is one component of HIV prevention strategies. However, programs to prevent mother-to-child transmission (PMTCT) of HIV started in antenatal care. The objective of this study was to examine the status of family planning integration to HIV care from client and facility perspectives and identify factors associated with current family planning use. METHODS:A facility-based cross-sectional study was conducted from December 2017 to April 2018. Data were coded and double entered into EPI Info version 3.5.4 and exported to STATA version 14 for analysis. Bi-variable and multivariable logistic regression analyses were conducted to assess the association of variables with the current family planning use. RESULTS:A total of 518 HIV-positive women were included in the study. Among HIV-positive women, 35.3% had an unmet need for family planning, and 21.4% responded that their pregnancies were unwanted. About two-thirds (68.1%) of women were using a modern family planning method at the time of the study. Among women who were currently using family planning, 88.8% got the service from a family planning clinic in the same facility, and only 1.1% got the service from the HIV care unit. Women who were not knowledgeable on PMTCT (AOR 0.47, 95% CI?=?0.24-0.90), divorced or separated women (AOR 0.19, 95% CI?=?0.10-0.37) and women in the age group of 25-34?years (AOR 0.42, 95% CI?=?0.20-0.88) and 35-49?years (AOR 0.41, 95% CI?=?0.17-0.99) were less likely to use modern family planning methods compared with those women who were knowledgeable, married and women in the age group of 15-24?years. Besides, women with higher income (AOR 2.12, 95% CI?=?1.26-3.57) were more likely to use modern family planning methods compared with women with lower incomes. CONCLUSION:This study indicated that there is a high unmet need for family planning among HIV-positive women and low family planning services integration in the PMTCT/ART clinics. Efforts should be strengthened to tackle the factors which hinder the use of modern family planning and improve family planning service integration.

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Acceptability of Family-Centered Advanced Care Planning for Adolescents With HIV.

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Acceptability of Family-Centered Advanced Care Planning for Adolescents With HIV.

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