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An exploratory survey of end-of-life attitudes, beliefs, and experiences of adolescents with HIV/AIDS and their families.

ABSTRACT: For youths with life-limiting conditions, little is known regarding families' understanding of their adolescent's wishes for end-of-life (EOL) care.To examine congruence in HIV positive adolescents and their families' thoughts about death and dying.The Lyon Advance Care Planning Survey-Adolescent and Surrogate versions were administered within a randomized controlled trial. Participants (n=48) were medically stable adolescents aged 14-21 years with HIV/AIDS and their families. Congruence was measured by intraclass correlation coefficients (ICCs) for continuous variables and by kappa for ordinal or dichotomous responses.Adolescent participants were as follows: mean age 16.6 years (range 14-21); 37.5% males; 92% African American; 38% CD4 count <200; and viral load mean=32,079 copies/mL (range <400-91,863 copies/mL). Adolescent/family dyads agreed that it is important to complete an advance directive to let loved ones know their wishes (21/24 dyads), yet no dyads agreed an advance directive had been completed. Dyads endorsed incongruent thoughts about the adolescent being afraid of dying in pain (64%; congruent afraid=8 dyads, kappa=-0.0769) and being off life support machines (congruent important=9 dyads, ICC=-0.133, 95% confidence interval = -0.540, 0.302, P=0.721). Families' knowledge of teens' preferences for the timing of EOL conversations (early vs. late in course of illness) was poor (kappa=-0.1186). Adolescents (90%) wanted to talk about EOL issues before they entered the dying phase.Although important areas of congruence emerged, equally important areas, such as the timing of these conversations and adolescents' EOL needs and wishes, are not known by their families. Families need help initiating conversations to assure that their adolescents' EOL wishes are known to them.

SUBMITTER: Garvie PA

PROVIDER: S-EPMC3432673 | biostudies-literature | 2012 Sep

REPOSITORIES: biostudies-literature

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An exploratory survey of end-of-life attitudes, beliefs, and experiences of adolescents with HIV/AIDS and their families.

Garvie Patricia A PA He Jianping J Wang Jichuan J D'Angelo Lawrence J LJ Lyon Maureen E ME

Journal of pain and symptom management 20120707 3

<h4>Context</h4>For youths with life-limiting conditions, little is known regarding families' understanding of their adolescent's wishes for end-of-life (EOL) care.<h4>Objectives</h4>To examine congruence in HIV positive adolescents and their families' thoughts about death and dying.<h4>Methods</h4>The Lyon Advance Care Planning Survey-Adolescent and Surrogate versions were administered within a randomized controlled trial. Participants (n=48) were medically stable adolescents aged 14-21 years w ...[more]

PMID: 22771129

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Project description:Importance:Lack of pediatric advance care planning has been associated with poor communication, increased hospitalization, poor quality of life, and legal actions. Clinicians presume that families understand adolescents' treatment preferences for end-of-life care. Objective:To examine patient-reported end-of-life values and needs of adolescents with cancer and congruence with their families' understanding of these needs. Design, Setting, and Participants:This cross-sectional survey was conducted among adolescent-family dyads from July 16, 2016, to April 30, 2019, at 4 tertiary care pediatric US hospitals. Participants included 80 adolescent-family dyads (160 participants) within a larger study facilitating pediatric advance care planning. Adolescent eligibility criteria included being aged 14 to 21 years, English speaking, being diagnosed with cancer at any stage, and knowing their diagnosis. Family included legal guardians for minors or chosen surrogate decision-makers for those aged 18 years or older. Data analysis was performed from April 2019 to November 2019. Exposure:Session 1 of the 3-session Family Centered Pediatric Advance Care Planning for Teens With Cancer intervention. Main Outcomes and Measures:The main outcome was congruence between adolescents with cancer and their families regarding adolescents' values, goals, and beliefs about end-of-life care. Prevalence-adjusted and bias-adjusted κ (PABAK) values were used to measure congruence on the Lyon Advance Care Planning Survey-Revised (Patient and Surrogate versions). Results:A total of 80 adolescent-family dyads (160 participants) were randomized to the intervention group in the original trial. Among the adolescents, 44 (55.0%) were female and 60 (75.0%) were white, with a mean (SD) age of 16.9 (1.8) years. Among family members, 66 (82.5%) were female and 65 (81.3%) were white, with a mean (SD) age of 45.3 (8.3) years. Family members' understanding of their adolescent's beliefs about the best time bring up end-of-life decisions was poor: 86% of adolescents wanted early timing (before getting sick, while healthy, when first diagnosed, when first sick from a life-threatening illness, or all of the above), but only 39% of families knew this (PABAK, 0.18). Families' understanding of what was important to their adolescents when dealing with their own dying was excellent for wanting honest answers from their physician (PABAK, 0.95) and understanding treatment choices (PABAK, 0.95) but poor for dying a natural death (PABAK, 0.18) and being off machines that extend life, if dying (PABAK, 0). Conclusions and Relevance:Many families had a poor understanding of their adolescent's values regarding their own end-of-life care, such as when to initiate end-of-life conversations and preference for being off machines that extend life. Pediatric advance care planning could minimize these misunderstandings with the potential for a substantial impact on quality of care.

Project description:Adolescents and young adults in sub-Saharan Africa (SSA) are particularly vulnerable to human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS) infection. Adolescents orphaned as a direct result of HIV/AIDS are at an elevated risk of acquiring HIV/AIDS and other sexually transmitted infections. However, limited empirical evidence exists on HIV knowledge and prevention programs, especially those designed to address HIV information gaps among adolescents. This study evaluates the effect of a peer mentorship program provided in addition to other supportive services on HIV/AIDS knowledge, beliefs, and prevention attitudes, among school-going orphaned adolescents in southern Uganda. We utilize data from the Bridges to the Future Study, a 5-year longitudinal randomized experimental study funded by the National Institute of Child Health and Human Development. Out of the 1410 adolescents enrolled in the study (average age = 12.7 at study initiation), 855 of them participated in a nine-session, curriculum based peer mentorship program. We analyzed data collected at baseline and 12-months post intervention initiation. The results from bivariate and regression analysis indicate that, controlling for socioeconomic characteristics, adolescents who participated in a peer mentorship program were more likely than non-participants to report increased scores on HIV/AIDS knowledge(b = .86, 95%CI = .47 - 1.3, p ≤ .001); better scores on desired HIV/AIDS-related beliefs (b = .29, 95%CI = .06 - .52, p ≤ .01); and better scores on HIV/AIDS prevention attitudes (b = .76, 95%CI = .16 - 1.4, p ≤ .01). Overall, the study findings point to the potential role a of peer mentorship program in promoting the much-desired HIV/AIDS knowledge, beliefs, and prevention attitudes among orphaned adolescents. Future programs and policies that support AIDS-orphaned adolescents in sub-Saharan Africa should consider incorporating peer mentoring programs that provide correct, age, and culturally appropriate HIV information to help protect orphaned adolescents and reduce the risk of HIV infections.

Project description:BackgroundIdentifying essential competencies in end-of-life care, as well as general practitioners' (GPs) confidence in these competencies, is essential to guide training and quality improvement efforts in this domain.AimTo determine which competencies in end-of-life care are considered important by GPs, to assess GPs' confidence in these competencies in a European context and their reasons to refer terminally ill patients to a specialist.Design and settingCross-sectional postal survey involving a stratified random sample of 2000 GPs in Switzerland in 2014.MethodSurvey development was informed by a previous qualitative exploration of relevant end-of-life GP competencies. Main outcome measures were GPs' assessment of the importance of and confidence in 18 attributes of end-of-life care competencies, and reasons for transferring care of terminally-ill patients to a specialist. GP characteristics associated with main outcome measures were tested using multivariate regression models.ResultsThe response rate was 31%. Ninety-nine percent of GPs considered the recognition and treatment of pain as important, 86% felt confident about it. Few GPs felt confident in cultural (16%), spiritual (38%) and legal end-of-life competencies such as responding to patients seeking assisted suicide (35%) although more than half of the respondents regarded these competencies as important. Most frequent reasons to refer terminally ill patients to a specialist were lack of time (30%), better training of specialists (23%) and end-of-life care being incompatible with other duties (19%). In multiple regression analyses, confidence in end-of-life care was positively associated with GPs' age, practice size, home visits and palliative training.ConclusionsGPs considered non-somatic competencies (such as spiritual, cultural, ethical and legal aspects) nearly as important as pain and symptom control. Yet, few GPs felt confident in these non-somatic competencies. These findings should inform training and quality improvement efforts in this domain, in particular for younger, less experienced GPs.

Project description:BackgroundEnd-of-life discussions (EOLds) occur infrequently until cancer patients become terminally ill.MethodsTo identify factors associated with the timing of EOLds, we conducted a nationwide survey of 864 medical oncologists. We surveyed the timing of EOLds held with advanced cancer patients regarding prognosis, hospice, site of death, and do-not-resuscitate (DNR) status; and we surveyed physicians' experience of EOLds, perceptions of a good death, and beliefs regarding these issues. Multivariate analyses identified determinants of early discussions.ResultsAmong 490 physicians (response rate: 57%), 165 (34%), 65 (14%), 47 (9.8%), and 20 (4.2%) would discuss prognosis, hospice, site of death, and DNR status, respectively, "now" (i.e., at diagnosis) with a hypothetical patient with newly diagnosed metastatic cancer. In multivariate analyses, determinants of discussing prognosis "now" included the physician perceiving greater importance of autonomy in experiencing a good death (odds ratio [OR]: 1.34; p = .014), less perceived difficulty estimating the prognosis (OR: 0.77; p = .012), and being a hematologist (OR: 1.68; p = .016). Determinants of discussing hospice "now" included the physician perceiving greater importance of life completion in experiencing a good death (OR: 1.58; p = .018), less discomfort talking about death (OR: 0.67; p = .002), and no responsibility as treating physician at end of life (OR: 1.94; p = .031). Determinants of discussing site of death "now" included the physician perceiving greater importance of life completion in experiencing a good death (OR: 1.83; p = .008) and less discomfort talking about death (OR: 0.74; p = .034). The determinant of discussing DNR status "now" was less discomfort talking about death (OR: 0.49; p = .003).ConclusionReflection by oncologists on their own values regarding a good death, knowledge about validated prognostic measures, and learning skills to manage discomfort talking about death is helpful for oncologists to perform appropriate EOLds.Implications for practiceOncologists' own perceptions about what is important for a "good death," perceived difficulty in estimating the prognosis, and discomfort in talking about death influence their attitudes toward end-of-life discussions. Reflection on their own values regarding a good death, knowledge about validated prognostic measures, and learning skills to manage discomfort talking about death are important for improving oncologists' skills in facilitating end-of-life discussions.

Dataset Information

An exploratory survey of end-of-life attitudes, beliefs, and experiences of adolescents with HIV/AIDS and their families.

Publications

An exploratory survey of end-of-life attitudes, beliefs, and experiences of adolescents with HIV/AIDS and their families.

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