Development, Feasibility, and Acceptability of the Family/Adolescent-Centered (FACE) Advance Care Planning Intervention for Adolescents with HIV

Abstract

Objectives: To develop, adapt, and ensure feasibility, acceptability, and safety of the Family=Adolescent-Centered (FACE) Advance Care Planning intervention. Patients and Methods: Two-group, randomized, controlled trial in two hospital-based outpatient clinics in Washington, D.C. and Memphis, Tennessee, from 2006 to 2008 was conducted. Participants (n ¼ 38 dyads) included medically stable adolescents aged 14 to 21 years with HIV=AIDS and surrogates=families over age 20. Three 60-to 90-minute sessions were conducted via a semistructured family interview with a trained=certified interviewer. Intervention received: (1) Lyon Advance Care Planning Survey; (2) Respecting Choices interview; and (3) Five Wishes. Control received (1) Developmental History, (2) Health Tips, and (3) Future Plans. Feasibility was measured by percent enrollment, attendance, retention, and completeness of data. Acceptability and safety were measured by Satisfaction Questionnaire, using longitudinal regression analysis. Results: Adolescents' mean age was 16 years; 40% were males; 92% were black; HIV transmission rate was 68% perinatal and 32% sexually acquired; 42% were asymptomatic; 29% were symptomatic; and 29% had a diagnosis of AIDS. Intervention adolescents were more likely to rate sessions positively ( p ¼ 0.002) and less likely to rate sessions negatively ( p ¼ 0.011) than controls. Guardians=surrogates were more likely to rate the sessions positively ( p ¼ 0.041) and demonstrated no difference in rating sessions negatively ( p ¼ 0.779) than controls. Conclusions: Existing advance care planning models can be adapted for age, disease, and culture. Adolescents with HIV=AIDS were satisfied with an advance care planning approach that facilitated discussion about their end-of-life wishes with their families. Families acknowledged a life-threatening condition and were willing to initiate end-of-life conversations when their adolescents were medically stable.

Pediatric Advance Directives: Parents’ Knowledge, Experience, and Preferences

“…3,18,19 To date, most research evaluating pediatric palliative care has focused on adolescents who have HIV and cancer. [20][21][22] The current study examined, among a broad range of children who have chronic illness, the experiences that their parents and caregivers have had with ADs. This study aimed to identify knowledge and preferences about ADs and characteristics associated with interest in creating ADs.…”

“…This can potentially eliminate some of the barriers to these conversations, such as provider time constraints and discomfort. 9,11,20,21 Limitations Our study has a number of limitations. The survey used in this study was developed specifically for this study and therefore not previously validated.…”

“…27 Several studies looking specifically at advance care planning in pediatrics have reported the process to be helpful and beneficial to the family and child. [20][21][22][28][29][30][31][32] At the conclusion of our survey, most participants were offered a basic information sheet about the hospital' s Comfort and Palliative Care Team (CPCT) and a business card to contact the team. No respondents contacted the CPCT, which suggests that the parents or caregivers took the information without intention of following up with the CPCT, intended to follow-up but ultimately decided not to, or faced subsequent barriers arranging follow-up despite their intention to do so.…”

Does Decisional Conflict Differ Across Race and Ethnicity Groups? A Study of Parents Whose Children Have a Life-Threatening Illness

“…11 Interestingly, Black and Hispanic patients were more likely to defer final decisions to providers and women were more likely to choose involvement in treatment decisions. 12 Racial and ethnic minority patients may prefer to delegate decisions to physicians because of their expectations of the physicianpatient relationship, literacy/language barriers, self-efficacy in health care, or physician expectations of patients. 10,11 Little is known about the decision-making experiences of families whose children have life-threatening illnesses.…”

“…Adolescents in the intervention felt better about their decisions. 12 A study by Knapp and colleagues 13 compared the performance of two decisional conflict scales with 266 parents of children with life-threatening illnesses. Results from the study suggest that the Decisional Conflict Scale (DCS) is a valid and reliable instrument for this population.…”