Testing a post-discharge nurse-led transitional home visit in acute care pediatrics: the Hospital-To-Home Outcomes (H2O) study protocol.

AIMS: The aims of this study were: (1) to explore the family perspective on pediatric hospital-to-home transitions; (2) to modify an existing nurse-delivered transitional home visit to better meet family needs; (3) to study the effectiveness of the modified visit for reducing healthcare re-use and improving patient- and family-centered outcomes in a randomized controlled trial. BACKGROUND: The transition from impatient hospitalization to outpatient care is a vulnerable time for children and their families; children are at risk for poor outcomes that may be mitigated by interventions to address transition difficulties. It is unknown if an effective adult transition intervention, a nurse home visit, improves postdischarge outcomes for children hospitalized with common conditions. DESIGN: (1) Descriptive qualitative; (2) Quality improvement; (3) Randomized controlled trial. METHODS: Aim 1 will use qualitative methods, through focus groups, to understand the family perspective of hospital-to-home transitions. Aim 2 will use quality improvement methods to modify the content and processes associated with nurse home visits. Modifications to visits will be made based on parent and stakeholder input obtained during Aims 1 & 2. The effectiveness of the modified visit will be evaluated in Aim 3 through a randomized controlled trial. DISCUSSION: We are undertaking the study to modify and evaluate a nurse home visit as an effective acute care pediatric transition intervention. We expect the results will be of interest to administrators, policy makers and clinicians interested in improving pediatric care transitions and associated postdischarge outcomes, in the light of impending bundled payment initiatives in pediatric care.

Beliefs and Motivations Regarding Early Shared Reading of Parents From Low-Income Households: A Qualitative Study.

OBJECTIVE: Parent-child "shared" reading is a catalyst for development of language and other emergent literacy skills. The American Academy of Pediatrics recommends that parents initiate shared reading as soon as possible after birth. Persistent disparities exist in reading resources, routines, and subsequent literacy outcomes, disproportionately impacting low-income households. We sought to understand beliefs, motivations, and experiences regarding shared reading during early infancy among parents from low-income households. METHODS: In this qualitative exploratory study, parents of infants aged 0 to 9 months from low-income households who had initiated shared reading ("readers") and those who had not ("nonreaders") were purposefully recruited to participate in individual semistructured virtual interviews. These interviews were coded using inductive thematic analysis by a 3-member team with diverse backgrounds. RESULTS: A total of 21 parents participated (57% readers, 86% mothers). Infants were 86% African American/Black, with a mean age of 3 months. Barriers noted by readers and nonreaders were i) competing demands on time, ii) lack of resources, and iii) parental mental health. An additional barrier noted solely by nonreaders was iv) it's too early/baby is not ready. Two benefits of reading were noted by both groups: 1) parents as child's first teachers and 2) reading catalyzes the child's development. Benefits noted exclusively by readers included 3) reading begets more reading, 4) bonding, 5) "it works," and 6) "two-for-one" shared reading (other children involved). CONCLUSIONS: This study provided insights into barriers and benefits regarding shared reading by socioeconomically disadvantaged parents of infants and has the potential to inform reading-related guidance and interventions.

Low-income parents' perceptions of pediatrician advice on early childhood education.

The American Academy of Pediatrics recommends that pediatricians promote early childhood education (ECE). However, pediatricians have met resistance from low-income parents when providing anticipatory guidance on some topics outside the realm of physical health. Parents' views on discussing ECE with the pediatrician have not been studied. We sought to understand low-income parents' experiences and attitudes with regard to discussing ECE with the pediatrician and to identify opportunities for pediatrician input. We conducted 27 in-depth, semi-structured, qualitative interviews with parents of 3- and 4-year-old patients (100% Medicaid, 78% African American) at an urban primary care center. Interviews were audio-recorded, transcribed verbatim, and reviewed for themes by a multidisciplinary team. Most low-income parents in our study reported they primarily sought ECE advice from family and friends but were open to talking about ECE with the pediatrician. They considered their children's individual behavior and development to be important factors in ECE decisions and appreciated pediatricians' advice about developmental readiness for ECE. Participants' decisions about ECE were often driven by fears that their children would be abused or neglected. Many viewed 3 years as the age at which children had sufficient language skills to report mistreatment and could be safely enrolled in ECE. Participants were generally accepting of discussions about ECE during well child visits. There may be opportunity for the pediatrician to frame ECE discussions in the context of development, behavior, and safety and to promote high-quality ECE at an earlier age.

Patient reported determinants of health: a qualitative analysis of veterans with chronic obstructive pulmonary disease.

Although COPD is a common disorder of veterans who receive care from the Veterans Healthcare Administration (VHA), the perceptions of veterans with COPD about their disease, its effects on their lives, and their interactions with the VHA have not been determined. Utilizing qualitative methodology, we conducted focus groups of veterans with COPD at the Cincinnati VA Medical Center. Participants were selected by systematic sampling from the top quintile of veterans stratified by the cost of healthcare utilization related to a primary diagnosis of COPD and grouped by age and use of supplemental oxygen. All 42 participants were male and had a mean age of 65 years. Analysis of the focus group transcripts demonstrated five major themes: 1) Physical and Functional Limitations: work and employment constraints, recreation restrictions, limits on activities of daily living, reduced sexuality, concerns about housing and finances, and physical symptoms; 2) Restricted Social Interactions/Altered Social Networks: altered relationships with friends and family and reliance upon family and care givers; 3) Emotional Effects: reduced self-worth, vulnerability, depression, perseverance and adaptation, hopelessness, fear, pride, and lack of control; 4) Limitations in the Understanding of COPD: unawareness of diagnosis, triggers and reaction to disease manifestations, COPD management; and 5) Complex Healthcare Interactions. COPD pervasively and extensively affects all aspects of veterans' lives and causes significant consequences for their care and management.

Children with uncontrolled asthma from economically disadvantaged neighborhoods: Needs assessment and the development of a school-based telehealth and electronic inhaler monitoring system.

BACKGROUND: Children from economically disadvantaged communities often encounter healthcare access barriers, increasing risk for poorly controlled asthma and subsequent healthcare utilization. This highlights the need to identify novel intervention strategies for these families. OBJECTIVE: To better understand the needs and treatment preferences for asthma management in children from economically disadvantaged communities and to develop a novel asthma management intervention based on an initial needs assessment and stakeholder feedback. METHODS: Semistructured interviews and focus groups were conducted with 19 children (10-17 years old) with uncontrolled asthma and their caregivers, 14 school nurses, 8 primary care physicians, and three school resource coordinators from economically disadvantaged communities. Interviews and focus groups were audio-taped and transcribed verbatim and then analyzed thematically to inform intervention development. Using stakeholder input, an intervention was developed for children with uncontrolled asthma and presented to participants for feedback to fully develop a novel intervention. RESULTS: The needs assessment resulted in five themes: (1) barriers to quality asthma care, (2) poor communication across care providers, (3) problems identifying and managing symptoms and triggers among families, (4) difficulties with adherence, and (5) stigma. A proposed video-based telehealth intervention was proposed to stakeholders who provided favorable and informative feedback for the final development of the intervention for children with uncontrolled asthma. CONCLUSIONS: Stakeholder input and feedback provided information critical to the development of a multicomponent (medical and behavioral) intervention in a school setting that uses technology to facilitate care, collaboration, and communication among key stakeholders to improve asthma management for children from economically disadvantaged neighborhoods.

Physical activity in child-care centers: do teachers hold the key to the playground?

Many (56%) US children aged 3-5 years are in center-based childcare and are not obtaining recommended levels of physical activity. In order to determine what child-care teachers/providers perceived as benefits and barriers to children's physical activity in child-care centers, we conducted nine focus groups and 13 one-on-one interviews with 49 child-care teachers/providers in Cincinnati, OH. Participants noted physical and socio-emotional benefits of physical activity particular to preschoolers (e.g. gross motor skill development, self-confidence after mastery of new skills and improved mood, attention and napping after exercise) but also noted several barriers including their own personal attitudes (e.g. low self-efficacy) and preferences to avoid the outdoors (e.g. don't like hot/cold weather, getting dirty, chaos of playground). Because individual teachers determine daily schedules and ultimately make the decision whether to take the children outdoors, they serve as gatekeepers to the playground. Participants discussed a spectrum of roles on the playground, from facilitator to chaperone to physical activity inhibitor. These findings suggest that children could have very different gross motor experiences even within the same facility (with presumably the same environment and policies), based on the beliefs, creativity and level of engagement of their teacher.

Confirmatory factor analysis of the Child Feeding Questionnaire among low-income African American families of preschool children.

This study examined the factor structure for three of the Child Feeding Questionnaire (CFQ) subscales, a widely used measure of parental feeding practices, among 296 low-income parents of African American preschool children. Confirmatory factor analysis showed an overall poor fit among CFQ subscales; Restriction, Pressure to Eat, and Concern about Child Weight, (chi(2), (df=87=300.249, CFI=1.00, NNFI=1.07, RMSEA=.091). Additionally, Cronbach's Alpha coefficients for 2 of the three subscales were below acceptable recommendations (Restriction=0.69; Pressure to Eat=0.58). These results suggest further psychometric clarification is needed to understand commonly reported feeding practice constructs among low-income African American mothers of preschool aged children.

How low-income mothers with overweight preschool children make sense of obesity.

Epidemiologic and qualitative studies have found that most mothers with overweight preschool children do not think their children are overweight. This might present a challenge for clinicians who wish to address obesity in young children. To understand mothers' perceptions of their overweight children's weight, we conducted semistructured interviews with 21 mothers of overweight preschool children enrolled in Kentucky's Special Supplemental Nutrition Program for Women, Infants, and Children. Although these mothers did not label their children as overweight, they were worried about children's weight, particularly as it related to their emotional well-being. These worries about obesity were reflected in three central tensions that shaped the way mothers perceived their children's weight and informed maternal feeding strategies: (a) nature vs. nurture, (b) medical authority vs. lived experience, and (c) relieving immediate stress vs. preventing long-term consequences. Acknowledging mothers' concerns and tensions might help clinicians communicate more effectively with them about obesity.

The Parent Role in Advocating for a Deteriorating Child: A Qualitative Study.

BACKGROUND AND OBJECTIVES: Families of children with medical complexity are experts on their child's baseline behavior and temperament and may recognize changes in their hospitalized child's health before clinicians. Our objective was to develop a comprehensive understanding of how families identify and communicate their child's deteriorating health with the hospital-based health care team. METHODS: In this qualitative study, our multidisciplinary team recruited family members of hospitalized children with neurologic impairment. Interviews, conducted in the hospital, were audio recorded, deidentified, and transcribed. By using inductive thematic analysis, each transcript was independently coded by 3 or 4 team members. Members met regularly to reach consensus on coding decisions. Patterns observed were organized into themes and subthemes. RESULTS: Participants included 28 family members of 26 hospitalized children 9 months to 17 years of age. Children had a mean of 9 hospitalizations in the previous 3 years. Analysis resulted in 6 themes. First, families often reported their child "writes his own book," meaning the child's illness narrative rarely conformed to textbooks. Second, families developed informal, learned pathways to navigate the inpatient system. Third, families stressed the importance of advocacy. Fourth, families self-identified as "not your typical parents" and discussed how they learned their roles as part of the care team. Fifth, medical culture often did not support partnership. Finally, families noted they are often "running on empty" from stress, fear, and lack of sleep. CONCLUSIONS: Families of children with medical complexity employ mature, experience-based pathways to identify deteriorating health. Existing communication structures in the hospital are poorly equipped to incorporate families' expertise.

A Qualitative Study of Increased Pediatric Reutilization After a Postdischarge Home Nurse Visit.

BACKGROUND: The Hospital to Home Outcomes (H2O) trial was a 2-arm, randomized controlled trial that assessed the effects of a nurse home visit after a pediatric hospital discharge. Children randomized to the intervention had higher 30-day postdischarge reutilization rates compared with those with standard discharge. We sought to understand perspectives on why postdischarge home nurse visits resulted in higher reutilization rates and to elicit suggestions on how to improve future interventions. METHODS: We sought qualitative input using focus groups and interviews from stakeholder groups: parents, primary care physicians (PCP), hospital medicine physicians, and home care registered nurses (RNs). A multidisciplinary team coded and analyzed transcripts using an inductive, iterative approach. RESULTS: Thirty-three parents participated in interviews. Three focus groups were completed with PCPs (n = 7), 2 with hospital medicine physicians (n = 12), and 2 with RNs (n = 10). Major themes in the explanation of increased reutilization included: appropriateness of patient reutilization; impact of red flags/warning sign instructions on family's reutilization decisions; hospital-affiliated RNs "directing traffic" back to hospital; and home visit RNs had a low threshold for escalating care. Major themes for improving design of the intervention included: need for improved postdischarge communication; individualizing home visits-one size does not fit all; and providing context and framing of red flags. CONCLUSION: Stakeholders questioned whether hospital reutilization was appropriate and whether the intervention unintentionally directed patients back to the hospital. Future interventions could individualize the visit to specific needs or diagnoses, enhance postdischarge communication, and better connect patients and home nurses to primary care.

Health values in adolescents with or without inflammatory bowel disease.

OBJECTIVE: To examine for differences in and predictors of health value/utility scores in adolescents with or without inflammatory bowel disease (IBD). STUDY DESIGN: Adolescents with IBD and healthy control subjects were interviewed in an academic health center. We collected sociodemographic data and measured health status, personal, family, and social characteristics, and spiritual well-being. We assessed time tradeoff (TTO) and standard gamble (SG) utility scores for current health. We performed bivariate and multivariable analyses with utility scores used as outcomes. RESULTS: Sixty-seven patients with IBD and 88 healthy control subjects 11 to 19 years of age participated. Among subjects with IBD, mean (SD) TTO scores were 0.92 (0.17), and mean (SD) SG scores were 0.97 (0.07). Among healthy control subjects, mean (SD) TTO scores were 0.99 (0.03) and mean (SD) SG scores were 0.98 (0.03). TTO scores were significantly lower (P= .001), and SG scores trended lower (P= .065) in patients with IBD when compared with healthy control subjects. In multivariable analyses controlling for IBD status, poorer emotional functioning and spiritual well-being were associated with lower TTO (R(2)=0.17) and lower SG (R(2)=0.22) scores. CONCLUSION: Direct utility assessment in adolescents with or without IBD is feasible and may be used to assess outcomes. Adolescents with IBD value their health state highly, although less so than healthy control subjects. Emotional functioning and spiritual well-being appear to influence utility scores most strongly.

Flip flops, dress clothes, and no coat: clothing barriers to children's physical activity in child-care centers identified from a qualitative study.

BACKGROUND: Three-quarters of 3-6 year-old children in the U.S. spend time in childcare; many spend most of their waking hours in these settings. Daily physical activity offers numerous health benefits, but activity levels vary widely across centers. This study was undertaken to explore reasons why physical activity levels may vary. The purpose of this paper is to summarize an unexpected finding that child-care providers cited was a key barrier to children's physical activity. METHODS: Nine focus groups with 49 child-care providers (55% black) from 34 centers (including inner-city, suburban, Head Start and Montessori) were conducted in Cincinnati, OH. Three independent raters analyzed verbatim transcripts for themes. Several techniques were used to increase credibility of findings, including interviews with 13 caregivers. RESULTS: Two major themes about clothing were: 1) children's clothing was a barrier to children's physical activity in child-care, and 2) clothing choices were a significant source of conflict between parents and child-care providers. Inappropriate clothing items included: no coat/hat/gloves in the wintertime, flip flops or sandals, dress/expensive clothes, jewelry, and clothes that were either too loose or too tight. Child-care providers explained that unless there were enough extra coats at the center, a single child without a coat could prevent the entire class from going outside. Caregivers suggested several reasons why parents may dress their child inappropriately, including forgetfulness, a rushed morning routine, limited income to buy clothes, a child's preference for a favorite item, and parents not understanding the importance of outdoor play. Several child-care providers favored specific policies prohibiting inappropriate clothing, as many reported limited success with verbal or written reminders to bring appropriate clothing. CONCLUSION: Inappropriate clothing may be an important barrier to children's physical activity in child-care settings, particularly if the clothing of a few children preclude physical activity for the remaining children. Center directors and policy makers should consider devising clear and specific policies for the types of clothing that will be permitted in these settings so that children's active play opportunities are not curtailed. To enhance compliance, parents may need education about the importance and benefits of active play for children's development.

Caregiver Perspectives on Communication During Hospitalization at an Academic Pediatric Institution: A Qualitative Study.

OBJECTIVE: Communication among those involved in a child's care during hospitalization can mitigate or exacerbate family stress and confusion. As part of a broader qualitative study, we present an in-depth understanding of communication issues experienced by families during their child's hospitalization and during the transition to home. METHODS: Focus groups and individual interviews stratified by socioeconomic status included caregivers of children recently discharged from a children's hospital after acute illnesses. An open-ended, semistructured question guide designed by investigators included communication-related questions addressing information shared with families from the medical team about discharge, diagnoses, instructions, and care plans. By using an inductive thematic analysis, 4 investigators coded transcripts and resolved differences through consensus. RESULTS: A total of 61 caregivers across 11 focus groups and 4 individual interviews participated. Participants were 87% female and 46% non-white. Analyses resulted in 3 communication-related themes. The first theme detailed experiences affecting caregiver perceptions of communication between the inpatient medical team and families. The second revealed communication challenges related to the teaching hospital environment, including confusing messages associated with large multidisciplinary teams, aspects of family-centered rounds, and confusion about medical team member roles. The third reflected caregivers' perceptions of communication between providers in and out of the hospital, including types of communication caregivers observed or believed occurred between medical providers. CONCLUSIONS: Participating caregivers identified various communication concerns and challenges during their child's hospitalization and transition home. Caregiver perspectives can inform strategies to improve experiences, ease challenges inherent to a teaching hospital, and determine which types of communication are most effective.

Socioeconomic status influences the toll paediatric hospitalisations take on families: a qualitative study.

BACKGROUND: Stress caused by hospitalisations and transition periods can place patients at a heightened risk for adverse health outcomes. Additionally, hospitalisations and transitions to home may be experienced in different ways by families with different resources and support systems. Such differences may perpetuate postdischarge disparities. OBJECTIVE: We sought to determine, qualitatively, how the hospitalisation and transition experiences differed among families of varying socioeconomic status (SES). METHODS: Focus groups and individual interviews were held with caregivers of children recently discharged from a children's hospital. Sessions were stratified based on SES, determined by the percentage of individuals living below the federal poverty level in the census tract or neighbourhood in which the family lived. An open-ended, semistructured question guide was developed to assess the family's experience. Responses were systematically compared across two SES strata (tract poverty rate of <15% or ≥15%). RESULTS: A total of 61 caregivers who were 87% female and 46% non-white participated; 56% resided in census tracts with ≥15% of residents living in poverty (ie, low SES). Interrelated logistical (eg, disruption in-home life, ability to adhere to discharge instructions), emotional (eg, overwhelming and exhausting nature of the experience) and financial (eg, cost of transportation and meals, missed work) themes were identified. These themes, which were seen as key to the hospitalisation and transition experiences, were emphasised and described in qualitatively different ways across SES strata. CONCLUSIONS: Families of lower SES may experience challenges and stress from hospitalisations and transitions in different ways than those of higher SES. Care delivery models and discharge planning that account for such challenges could facilitate smoother transitions that prevent adverse events and reduce disparities in the postdischarge period. TRIAL REGISTRATION NUMBER: NCT02081846; Pre-results.

Optimizing a Nurse-led Transitional Home Visit Program in Preparation for a Randomized Control Trial.

INTRODUCTION: The Hospital to Home Outcomes study began with the end goal of evaluating the effectiveness of a single, nurse-led transitional home visit (home visit) program, for acutely ill, pediatric patients, which had been piloted at our institution. As part of the overall study design, building on prior randomized control trials that utilized a run-in period prior to the trial, our study team designed an optimization period to test the home visit and study procedures under real-world conditions. METHODS: For this optimization project, there were 3 process improvement goals: to improve the referral process to the home visit, to optimize the home visit content, and to define and operationalize measures of patient- and family-centered outcomes to be used in the subsequent randomized control trial. During the optimization period, a multidisciplinary study team met weekly to review family and stakeholder feedback about the iterative modifications made to the home visit process, content, and outcome measures. RESULTS: Optimization home visits were completed with 301 families across a variety of discharge diagnoses. The outcomes planned for the clinical trial were tested and refined. Feedback from families and stakeholders indicated that the content changes made to the home visits resulted in increased family knowledge of warning signs to monitor postdischarge. Thirty-one percent of families reported that they altered the care of their child after the home visit. CONCLUSION: Through iterative testing, informed by multistakeholder feedback, we leveraged patient and family engagement to maximize the effectiveness and generalizability of the home visit intervention.

Patterns of responses on health-related quality of life questionnaires among patients with HIV/AIDS.

BACKGROUND: Health-related quality of life (HRQoL) has become an important facet of HIV/AIDS research. Typically, the unit of analysis is either the total instrument score or subscale score. Developing a typology of responses across various HRQoL measures, however, may advance understating of patients' perspectives. METHODS: In a multicenter study, we categorized 443 patients' responses on utility measures (time-tradeoff, standard gamble, and rating scale) and the HIV/AIDS-Targeted Quality of Life (HAT-QoL) scale by using latent profile analysis to empirically derive classes of respondents. We then used linear regressions to identify whether class membership is associated with clinical measures (viral load, CD4, time since diagnosis, highly active antiretroviral therapy [HAART]) and psychosocial function (depressed mood, alcohol use, religious coping). RESULTS: Six classes were identified. Responses across the HAT-QoL subscales tended to fall into 3 groupings--high functioning (Class 1), moderate functioning (Classes 2 and 3), and low functioning (Classes 4 to 6); utility measures further distinguished individuals among classes. Regression analyses comparing those in Class 1 with those in the other 5 found significantly more symptoms of depression, negative religious coping strategies, and lower CD4 counts among subjects in Class 1. Those in Class 5 had been diagnosed with HIV longer, and members of Class 6 reported significantly less alcohol consumption, had higher viral loads, and were more likely to receive HAART. CONCLUSION: Patients with HIV respond differentially to various types of HRQoL measures. Health status and utility measures are thus complementary approaches to measuring HRQoL in patients with HIV.

How do patients with HIV/AIDS understand and respond to health value questions?

BACKGROUND: Utility assessment involves assigning values to experienced or unfamiliar health states. Pivotal to utility assessment, then, is how one conceptualizes health states such as "current health" and "perfect health." The purpose of this study was to ascertain how patients with HIV think about and value health and health states. METHODS: We conducted open-ended in-depth interviews with 32 patients with HIV infection purposefully sampled from a multicenter study of quality of life in HIV. After undergoing computer-assisted utility assessment using the rating scale, time tradeoff, and standard gamble methods, patients were asked how they thought about the utility tasks and about the terms "current health" and "perfect health." RESULTS: Patients understood the health valuation tasks but conceptualized health states in different ways. Many patients believed that "perfect health" was a mythical health state, and some questioned whether it was even desirable. "Current health" was variably interpreted as the status quo; deteriorating over time; or potentially improving with the hope of a cure. CONCLUSION: Patients with HIV infection vary in the way they conceptualize health states central to utility assessment, such as perfect health and current health. Better understanding of these issues could make important methodologic and policy-level contributions.

Changes in religiousness and spirituality attributed to HIV/AIDS: are there sex and race differences?

BACKGROUND/OBJECTIVE: Having a serious illness such as HIV/AIDS raises existential issues, which are potentially manifested as changes in religiousness and spirituality. The objective of this study was (1) to describe changes in religiousness and spirituality of people with HIV/AIDS, and (2) to determine if these changes differed by sex and race. METHODS: Three-hundred and forty-seven adults with HIV/AIDS from 4 sites were asked demographic, clinical, and religious/spiritual questions. Six religious/spiritual questions assessed personal and social domains of religiousness and spirituality. RESULTS: Eighty-eight participants (25%) reported being "more religious" and 142 (41%) reported being "more spiritual" since being diagnosed with HIV/AIDS. Approximately 1 in 4 participants also reported that they felt more alienated by a religious group since their HIV/AIDS diagnosis and approximately 1 in 10 reported changing their place of religious worship because of HIV/AIDS. A total of 174 participants (50%) believed that their religiousness/spirituality helped them live longer. Fewer Caucasians than African Americans reported becoming more spiritual since their HIV/AIDS diagnosis (37% vs 52%, respectively; P<.015), more Caucasians than African Americans felt alienated from religious communities (44% vs 21%, respectively; P<.001), and fewer Caucasians than African Americans believed that their religiousness/spirituality helped them live longer (41% vs 68% respectively; P<.001). There were no significantly different reported changes in religious and spiritual experiences by sex. CONCLUSIONS: Many participants report having become more spiritual or religious since contracting HIV/AIDS, though many have felt alienated by a religious group-some to the point of changing their place of worship. Clinicians conducting spiritual assessments should be aware that changes in religious and spiritual experiences attributed to HIV/AIDS might differ between Caucasian and African Americans.

Health-related quality of life in veterans and nonveterans with HIV/AIDS.

PURPOSE: To compare health-related quality of life (HRQoL) between patients receiving care in Veterans Administration (VA) settings (veterans) and non-VA settings (nonveterans), and to explore determinants of HRQoL and change in HRQoL over time in subjects living with HIV/AIDS. SUBJECTS: One hundred veterans and 350 nonveterans with HIV/AIDS from 2 VA and 2 university-based sites in 3 cities interviewed in 2002 to 2003 and again 12 to 18 months later. METHODS: We assessed health status (functional status and symptom bother), health ratings, and health values (time tradeoff [TTO] and standard gamble [SG] utilities). We also explored bivariate and multivariable associations of HRQoL measures with a number of demographic, clinical, spiritual/religious, and psychosocial characteristics. RESULTS: Compared with nonveterans, the veteran population was older (47.7 vs 42.0 years) and consisted of a higher proportion of males (97% vs 83%), of participants with a history of injection drug use (23% vs 15%), and of subjects with unstable housing situations (14% vs 6%; P<.05 for all comparisons). On scales ranging from 0 (worst) to 100 (best), veterans reported significantly poorer overall function (mean [SD]; 65.9 [17.2] vs 71.9 [16.8]); lower rating scale scores (67.6 [21.7] vs 73.5 [21.0]), lower TTO values (75.7 [37.4] vs 89.0 [23.2]), and lower SG values (75.0 [35.8] vs 83.2 [28.3]) than nonveterans (P<.05 for all comparisons); however, in multivariable models, veteran status was only a significant determinant of SG and TTO values at baseline. Among other determinants that were associated with multiple HRQoL outcomes in baseline and follow-up multivariable analyses were: symptom bother, overall function, religiosity/spirituality, depressive symptoms, and financial worries. CONCLUSIONS: Veterans reported significantly poorer HRQoL than nonveterans, but when controlling for other factors, veteran status was only a significant determinant of TTO and SG health values at baseline. Correlates of HRQoL such as symptom bother, spirituality/religiosity, and depressive symptoms could be fruitful potential targets for interventions to improve HRQoL in patients with HIV/AIDS.

Spirituality and religion in patients with HIV/AIDS.

BACKGROUND: Spirituality and religion are often central issues for patients dealing with chronic illness. The purpose of this study is to characterize spirituality/religion in a large and diverse sample of patients with HIV/AIDS by using several measures of spirituality/religion, to examine associations between spirituality/religion and a number of demographic, clinical, and psychosocial variables, and to assess changes in levels of spirituality over 12 to 18 months. METHODS: We interviewed 450 patients from 4 clinical sites. Spirituality/religion was assessed by using 8 measures: the Functional Assessment of Chronic Illness Therapy-Spirituality-Expanded scale (meaning/peace, faith, and overall spirituality); the Duke Religion Index (organized and nonorganized religious activities, and intrinsic religiosity); and the Brief RCOPE scale (positive and negative religious coping). Covariates included demographics and clinical characteristics, HIV symptoms, health status, social support, self-esteem, optimism, and depressive symptoms. RESULTS: The patients' mean (SD) age was 43.3 (8.4) years; 387 (86%) were male; 246 (55%) were minorities; and 358 (80%) indicated a specific religious preference. Ninety-five (23%) participants attended religious services weekly, and 143 (32%) engaged in prayer or meditation at least daily. Three hundred thirty-nine (75%) patients said that their illness had strengthened their faith at least a little, and patients used positive religious coping strategies (e.g., sought God's love and care) more often than negative ones (e.g., wondered whether God has abandoned me; P<.0001). In 8 multivariable models, factors associated with most facets of spirituality/religion included ethnic and racial minority status, greater optimism, less alcohol use, having a religion, greater self-esteem, greater life satisfaction, and lower overall functioning (R2=.16 to .74). Mean levels of spirituality did not change significantly over 12 to 18 months. CONCLUSIONS: Most patients with HIV/AIDS belonged to an organized religion and use their religion to cope with their illness. Patients with greater optimism, greater self-esteem, greater life satisfaction, minorities, and patients who drink less alcohol tend to be both more spiritual and religious. Spirituality levels remain stable over 12 to 18 months.