Dataset Information

Spirituality in HIV-infected adolescents and their families: FAmily CEntered (FACE) Advance Care Planning and medication adherence.

ABSTRACT:

Purpose

To explore the effect of spirituality and religious beliefs on FAmily CEntered (FACE) Advance Care Planning and medication adherence among human immunodeficiency virus (HIV) positive adolescents and their surrogate decision-makers.

Methods

A sample of HIV-positive adolescents (n = 40) and their surrogates, aged ? 21 years, (n = 40), was randomized to an active Healthy Living Control group or the FACE Advance Care Planning intervention, guided by transactional stress and coping theory. Adolescents' spirituality and their belief that HIV is a punishment from God were assessed at baseline and 3 months after the intervention, using the Functional Assessment of Chronic Illness Therapy-Spiritual Well Being Scale, Expanded, Version 4.

Results

Control adolescents increased faith and meaning/purpose more than FACE adolescents (p = .02). At baseline, more behaviorally infected adolescents (16%) believed that HIV was a punishment from God as compared with those who were infected perinatally (8%). Adolescents endorsing that HIV was a punishment scored lower on spirituality (p = .05) and adherence to Highly Active Antiretroviral Therapy (HAART) (p = .04). Surrogates were more spiritual than adolescents (p ? .0001).

Conclusion

Providing family support in a friendly, facilitated environment enhanced spirituality among adolescents. Facilitated family conversations had an especially positive effect on medication adherence and spiritual beliefs among behaviorally infected adolescents.

SUBMITTER: Lyon ME

PROVIDER: S-EPMC3096935 | biostudies-literature | 2011 Jun

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Spirituality in HIV-infected adolescents and their families: FAmily CEntered (FACE) Advance Care Planning and medication adherence.

Lyon Maureen E ME Garvie Patricia A PA Kao Ellin E Briggs Linda L He Jianping J Malow Robert R D'Angelo Lawrence J LJ McCarter Robert R

The Journal of adolescent health : official publication of the Society for Adolescent Medicine 20101230 6

<h4>Purpose</h4>To explore the effect of spirituality and religious beliefs on FAmily CEntered (FACE) Advance Care Planning and medication adherence among human immunodeficiency virus (HIV) positive adolescents and their surrogate decision-makers.<h4>Methods</h4>A sample of HIV-positive adolescents (n = 40) and their surrogates, aged ≥ 21 years, (n = 40), was randomized to an active Healthy Living Control group or the FACE Advance Care Planning intervention, guided by transactional stress and co ...[more]

PMID: 21575826

Similar Datasets

Project description:Background and objectivesMore than 90,000 patients with ESRD die annually in the United States, yet advance care planning (ACP) is underutilized. Understanding patients' and families' diverse needs can strengthen systematic efforts to improve ACP.Design, setting, participants, & measurementsIn-depth interviews were conducted with a purposive sample of patients and family/friends from dialysis units at two study sites. Applying grounded theory, interviews were audiotaped, professionally transcribed, and analyzed in an iterative process. Emergent themes were identified, discussed, and organized into major themes and subthemes.ResultsThirteen patients and nine family/friends participated in interviews. The mean patient age was 63 years (SD 14) and five patients were women. Participants identified as black (n=1), Hispanic (n=4), Native American (n=4), Pacific Islander (n=1), white (n=11), and mixed (n=1). Three major themes with associated subthemes were identified. The first theme, "Prior experiences with ACP," revealed that these discussions rarely occur, yet most patients desire them. A potential role for the primary care physician was broached. The second theme, "Factors that may affect perspectives on ACP," included a desire for more of a connection with the nephrologist, positive and negative experiences with the dialysis team, disenfranchisement, life experiences, personality traits, patient-family/friend relationships, and power differentials. The third theme, "Recommendations for discussing ACP," included thoughts on who should lead discussions, where and when discussions should take place, what should be discussed and how.ConclusionsMany participants desired better communication with their nephrologist and/or their dialysis team. A number expressed feelings of disenfranchisement that could negatively impact ACP discussions through diminished trust. Life experiences, personality traits, and relationships with family and friends may affect patient perspectives regarding ACP. This study's findings may inform clinical practice and will be useful in designing prospective intervention studies to improve patient and family experiences at the end of life.

Project description:BackgroundAdvance care planning (ACP) is reported to improve the quality of outcomes of care among those with life-limiting conditions. However, uptake is low among people living with multiple sclerosis (MS) and little is known about why or how people with MS engage in this process of decision-making.AimsTo develop and refine an initial theory on engagement in ACP for people with MS and to identify ways to improve its uptake for those who desire it.MethodsRealist review following published protocol and reporting following Realist and Meta-narrative Evidence Synthesis: Evolving Standards (RAMESES) guidelines. A multi-disciplinary team searched MEDLINE, PsychInfo, CINAHL, Scopus, Web of Science, Embase, Google Scholar in addition to other sources from inception to August 2019. Quantitative or qualitative studies, case reports, and opinion or discussion articles related to ACP and/or end of life discussions in the context of MS were included, as well as one article on physical disability and one on motor neuron disease, that contributed important contextual information. Researchers independently screened abstracts and extracted data from full-text articles. Using abductive and retroductive analysis, each article was examined for evidence to support or refute 'context, mechanism, and outcome' (CMO) hypotheses, using the Integrated Behaviour Model to guide theory development. Quality was assessed according to methodological rigour and relevance of evidence. Those studies providing rich descriptions were synthesised using a realist matrix to identify commonalities across CMO configurations.ResultsOf the 4,034 articles identified, 33 articles were included in the synthesis that supported six CMO hypotheses that identified contexts and mechanisms underpinning engagement in ACP for people with MS and included: acceptance of their situation, prior experiences, confidence, empowerment, fear (of being a burden, of death and of dying) and the desire for autonomy. Acceptance of self as a person with a life-limiting illness was imperative as it enabled people with MS to see ACP as pertinent to them. We identified the context of MS-its long, uncertain disease trajectory with periods of stability punctuated by crisis-inhibited triggering of mechanisms. Similarly, the absence of skills and confidence in advanced communication skills among health professionals prevented possibilities for ACP discussions taking place.ConclusionAlthough mechanisms are inhibited by the context of MS, health professionals can facilitate greater uptake of ACP among those people with MS who want it by developing their skills in communication, building trusting relationships, sharing accurate prognostic information and sensitively discussing death and dying.

Project description:Patient misunderstanding of prescription drug label instructions is a common cause of unintentional misuse of medication and adverse health outcomes. Those with limited literacy and English proficiency are at greater risk.To test the effectiveness of a patient-centered drug label strategy, including a Universal Medication Schedule (UMS), to improve proper regimen use and adherence compared to a current standard.Two-arm, multi-site patient-randomized pragmatic trial.English- and Spanish-speaking patients from eight community health centers in northern Virginia who received prescriptions from a central-fill pharmacy and who were 1) ?30 years of age, 2) diagnosed with type 2 diabetes and/or hypertension, and 3) taking ?2 oral medications.A patient-centered label (PCL) strategy that incorporated evidence-based practices for format and content, including prioritized information, larger font size, and increased white space. Most notably, instructions were conveyed with the UMS, which uses standard intervals for expressing when to take medicine (morning, noon, evening, bedtime).Demonstrated proper use of a multi-drug regimen; medication adherence measured by self-report and pill count at 3 and 9 months.A total of 845 patients participated in the study (85.6 % cooperation rate). Patients receiving the PCL demonstrated slightly better proper use of their drug regimens at first exposure (76.9 % vs. 70.1 %, p?=?0.06) and at 9 months (85.9 % vs. 77.4 %, p?=?0.03). The effect of the PCL was significant for English-speaking patients (OR 2.21, 95 % CI 1.13-4.31) but not for Spanish speakers (OR 1.19, 95 % CI 0.63-2.24). Overall, the intervention did not improve medication adherence. However, significant benefits from the PCL were found among patients with limited literacy (OR 5.08, 95 % CI 1.15-22.37) and for those with medications to be taken ?2 times a day (OR 2.77, 95 % CI 1.17-6.53).A simple modification to pharmacy-generated labeling, with minimal investment required, can offer modest improvements to regimen use and adherence, mostly among patients with limited literacy and more complex regimens. Trial Registration (ClinicalTrials.gov): NCT00973180, NCT01200849.

Dataset Information

Spirituality in HIV-infected adolescents and their families: FAmily CEntered (FACE) Advance Care Planning and medication adherence.

Purpose

Methods

Results

Conclusion

Publications

Spirituality in HIV-infected adolescents and their families: FAmily CEntered (FACE) Advance Care Planning and medication adherence.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets