Using Spirituality After an Adult CF Diagnosis: Cognitive Reframing and Adherence Motivation

Chronic illness is a significant stressor; the majority of Americans cope utilizing spirituality. Numerous studies demonstrate links between spiritual coping and health outcomes. The purpose of this study was to determine whether persons diagnosed with cystic fibrosis (CF) as adults use spirituality to cope and influence disease management. Semi-structured interviews were completed and analyzed using grounded theory.

Data saturation was reached following twelve interviews (83% female); representing 100% participation of those approached and 48% of eligible adults. Persons with late-life CF diagnoses used spirituality to make meaning, understanding themselves in a collaborative partnership with their pulmonologist and God. Supporting themes were: (a) God's intervention depended on treatment adherence and (b) spiritual meaning was constructed through positively reframing their experience.

The constructed meaning differed from that of adult parents of children with CF. Late-life diagnosed adults focused on personal responsibility for health. Clinical and research implications for chaplains are presented.     

Cigarette smoking behaviors among adults with serious mental illness in a nationally representative sample

PurposeThis study updates nationally representative information on cigarette smoking behaviors among adults with mental illness, particularly serious mental illness (SMI), to serve as a new benchmark for smoking cessation initiatives.MethodsData are from the 2008–2012 National Surveys on Drug Use and Health. Prevalence estimates for past month daily smoking, heavy smoking, mean cigarettes consumed per day, nicotine dependence, past month quit ratio, and proportion of cigarettes consumed are presented by mental illness status.ResultsAdults with SMI were more likely than adults with any mental illness (AMI) but not SMI and adults without mental illness to engage in smoking behaviors. Adults with AMI but not SMI were more likely to engage in all smoking behaviors compared with adults without mental illness. The past month quit ratio was significantly lower among adults with SMI and among adults with AMI but not SMI than among adults without mental illness. Adults with SMI comprised 6.9% of past month smokers but consumed 8.7% of all cigarettes.ConclusionsAdults with mental illness engage in more smoking behaviors and are less likely to quit than adults without mental illness. In this high-risk population, continued efforts to promote smoking cessation are needed.     

Self-care adherence and affective disorders in Barbadian adults with type 2 diabetes

PurposeDiabetes management requires adherence to complicated self-care behaviors. Therefore, the emotional state of the individual living with diabetes, is likely to affect their ability to comply with recommendations. This study explored the relationship of self-care adherence to diabetes distress and depression in Barbadian adults with type 2 diabetes.MethodsAdults aged 20 to 80 years, with type 2 diabetes, completed self-report questionnaires comprised of a profile section consisting of demographic and clinical characteristics; and standardized questionnaires comprising, The Diabetes Distress Scale (DDS), The Patient Health Questionnaire (PQH-9), and the Summary of Diabetes Self-care Activities Scale (SDSCA). Additionally biological measures (BP and HbA1c) were collected.ResultsFor the 509 participants there were no differences in adherence for males (30.8%) and females (69.2%), high diabetes distress and depression were associated with low adherence. General diet was negatively associated with BP and HbA1c; while HbA1c was positively correlated with blood glucose testing.ConclusionSelf-care non-adherence is more than a behavioral problem; it is a multidimensional phenomenon inclusive of demographic factors, condition or disease factors, psychological and social factors.     

Spirituality in HIV-infected Adolescents and Their Families: FAmily CEntered (FACE) Advance Care Planning and Medication Adherence

PurposeTo 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.MethodsA 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.ResultsControl 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).ConclusionProviding 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.     

Eliciting preferences for continuing medication among adult patients and parents of children with attention‐deficit hyperactivity disorder

BackgroundAdherence to medication for attention‐deficit hyperactivity disorder (ADHD) is less than optimal. Previous studies have primarily focused on qualitative assessment of factors that influence medication adherence.ObjectiveThis study aimed to quantify the factors that influence patient and parent preferences for continuing ADHD medication.MethodA discrete‐choice experiment was conducted to investigate preferences. Adults, and parents of children, with ADHD were presented with eight hypothetical choice tasks of three options (Medication A, Medication B, No Medication) described by six attributes related to medication outcomes. Preferences were estimated using a mixed multinomial logit model.ResultsOverall, respondents'' preferences (n = 216) for continuing medication were negative (mean [β] = −1.426, p < .001); however, a significant heterogeneity in preferences was observed amongst respondents (standard deviation = 0.805, p < .001). Improvements in education, aggressive behaviour, social behaviour and family functioning, and side effects and stigma, influenced respondents'' decision to continue taking medication. The respondents were willing to continue medication if they experienced positive effects, but side effects (even moderate) were the strongest concern for not continuing medication. While side effects were the most important factor for both adult patients and parents of children with ADHD, improvement in education was relatively more important for adults and improvement in aggressive behaviour, social behaviour and family functioning was relatively more important for parents of children with ADHD. Parents were more likely to not continue a medication with severe side effects even at the highest level of improvement in education.ConclusionsSide effects are the most important factor that influenced preferences for continuing medication for both adults with ADHD, as well as parents of children with ADHD. While overall the respondents preferred not to take/give medication, discrete‐choice experiment showed that the relative importance of factors that influenced continuation of medications was different for the two groups.Patient and Public InvolvementAdults, and parents of children, with ADHD participated in this study by completing the online questionnaire. The questionnaire was based on findings of research in the literature, as well as earlier focus groups conducted with adults, and parents of children, with ADHD. The face validity of the questionnaire was determined by asking parents of children, and adults, with ADHD (n = 3) to complete the survey and participate in a short discussion on their understanding of the questions and their recommendations on improving the clarity of the survey.     

Pneumococcal vaccination coverage among adults newly diagnosed with underlying medical conditions and regional variation in the U.S.

BackgroundThe Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices recommends pneumococcal vaccination for adults with chronic or immunocompromising conditions to prevent pneumococcal disease, yet vaccination rates are low and have limited information on regional variation. This study examines factors associated with pneumococcal vaccination in adults with underlying conditions and describes regional variation in vaccination across the U.S.MethodsUsing IBM MarketScan Commercial Database and Medicare Supplemental Database, this retrospective cohort study included adults ages 19–64 newly diagnosed with chronic (i.e. diabetes, chronic heart, lung, or liver disease, alcohol or tobacco dependence) or immunocompromising (i.e. cancer, chronic renal disease, organ transplant, HIV/AIDS, and asplenia) conditions in 2013. Adults were followed up until the time of pneumococcal vaccination, death, or December 31, 2019, whichever came first. Cox proportional hazards model was used to examine factors associated with vaccination. Vaccination rate was calculated by metropolitan statistical area (MSA) and visually represented on a U.S. map.Results255,330 adults were included. Vaccination rate increased from 6.0% to 21.1% among adults with one year and five years of follow-up, respectively. It took 2.4 years on average for adults to receive vaccination after initial diagnosis. Adults ages 50–64, 35–49 (relative to 19–34) or receiving influenza vaccination were more likely to receive pneumococcal vaccinations. Adults with HIV/AIDS were more likely and those with other conditions were less likely to be vaccinated than those with diabetes. Adults being diagnosed by other providers were less likely to be vaccinated than those diagnosed by primary care providers. Vaccination rate varied largely across MSAs, ranging from 0.0% (Ames, IA; Cheyenne, WY) to 34.0% (Ann Arbor, MI).ConclusionPneumococcal vaccination remains low and most adults with underlying conditions are unvaccinated. Insights into factors associated with vaccination, including regional variability, can help to increase pneumococcal vaccination.     

Spirituality's Role in Chronic Disease Self-Management: Sanctification of the Body in Families Dealing With Cystic Fibrosis

Sanctifying the Body (imbuing the body and its care with spiritual significance) is associated with pro-healthy behaviors and may be associated with adherence in families with chronic diseases. Our objective was to determine this construct's relevance to cystic fibrosis (CF) families and test the reliability and validity of a shortened Sanctification measure. The “Sacred Qualities of the Body” and “Manifestation of God in the Body” scales were completed by parents (N = 92) and adolescents with CF (N = 32) in a CF Clinic or by mail. Internal consistency reliability and factor analysis were performed on the parent sample. Parents and adolescents endorsed the construct. Internal consistency and validity was shown for adults and factor analysis showed two factors. Adolescent interest in an electronic spirituality chatroom correlated with increased sanctification. Sanctification is a relevant, measurable construct representing an under-appreciated aspect of the web of values contributing to adherence and health and bears further examination.     

A Disciplined Approach to Spiritual Care Giving for Adults Living with Cystic Fibrosis

SUMMARY

Adults living with cystic fibrosis are less likely than other pulmonary patients to describe themselves as religious, to attend worship services regularly, to use god language, to describe their spiritual life, and in general, to give any obvious, outward indications of their spiritual strength, concerns, and depth. And yet, they have consistently demonstrated in chaplain-patient encounters an awareness of the function and importance of their spirituality in relation to life choices, coping with illness, facing mortality, and expressing life meaning, beliefs, and values. A disciplined approach by chaplains is a key component to engaging these patients so that each person's unique spiritual story unfolds. Results from The Discipline demonstrate how adults with cystic fibrosis are different in their expression and approach to spirituality from other pulmonary patients.     

24-h movement behaviors among autistic adults: Differences by sex,age, and level of independence

BackgroundAutistic adults have low levels of physical activity [PA], high levels of sedentary behavior [SB], and insufficient sleep. Not known is the extent to which engagement in these movement behaviors vary by sex, age, and level of independence in activities of daily living (ADLs).ObjectiveTo characterize movement behaviors in a national sample of autistic adults by sex, age, and level of independence in ADLs.MethodsA national sample of autistic adults and caregivers of autistic adults self-reported PA, SB and sleep behaviors as well as demographic variables using an electronic survey. Levels of engagement in movement behaviors were described, and compared by sex, age (young-adult versus middle-age), and level of independence in ADLs.ResultsData were collected on 361 autistic adults (60.3% male, n = 217, m^age = 30.82 years, SD = 10.24). Overall, 44% did not meet the PA guideline; PA guideline adherence was lowest among males and those who were dependent on others in ADLs. Overall, the SB guideline was not met by 43% of the sample at weekdays and 48% at weekends. SB guideline adherence was lowest among adults who were middle-aged, and those who were fully independent in ADLs. Overall, 35.2% did not meet the total sleep time (TST) guideline. Middle-aged autistic adults had the lowest adherence to the TST guideline.ConclusionsThese finding should prompt researchers to consider these demographic differences, and tailor research and programmatic efforts to account for the unique movement behavior profiles of different segments of this heterogenous population.     

The fragile spirituality of parents whose children died in the pediatric intensive care unit

Abstract

Spiritual care is recognized as a relevant dimension of health care. In the context of pediatric palliative end-of-life care, spirituality entails more than adhering to a spiritual worldview or religion. Interviews with parents whose critically ill child died in the pediatric intensive care unit revealed features of a spirituality that is fragmentary and full of contradictions. This type of spirituality, which we refer to as fragile, speaks of parents’ connectedness with the deceased child and the hope of some kind of reuniting after one’s own death. Acknowledging that fragments of spirituality can be part of parents’ experiences in their child’s end-of-life stage can be a meaningful contribution to compassionate care.     

24-hour movement guideline adherence and mental health: A cross-sectional study of emerging adults with chronic health conditions and disabilities

BackgroundRecent work has shown that individuals with chronic health conditions and disabilities (CCD) meet the 24-h movement guidelines at lower rates than population norms; however, the evidence base remains limited across different stages of the lifespan and very few studies have examined associations with mental health outcomes.ObjectiveThis study examined 24-h movement guideline adherence among emerging adults with CCD compared to those without and associations between guideline adherence and indicators of mental health.MethodsThis cross-sectional study used data from the 2020 cycle of the Canadian Campus Wellbeing Survey. A total of 17,874 emerging adults enrolled at 20 post-secondary institutions (mean age = 21.6 ± 2.94 years; 65.2% female), including 3336 who identified with a CCD, self-reported their movement behaviors (physical activity, sedentary behaviors, sleep) and completed measures of psychological distress and mental well-being. Logistic regressions models were computed to examine differences in guideline adherence. Propensity score weighted linear regression models were computed to examine associations between guideline adherence and indicators of mental health.ResultsEmerging adults with CCD had significantly lower odds of meeting the 24-h movement guidelines than their peers, and disparities in guideline adherence were most pronounced among those with multimorbidity, developmental, and physical disabilities. Guideline adherence was associated with significantly more favorable scores for psychological distress and mental well-being among those with and without CCD.ConclusionsFindings suggest emerging adults with CCD engage in less healthy movement behavior patterns than their peers, yet they appear to experience similar mental health benefits when they do meet the 24-h movement guidelines.     

US Adults Fall Short of the Dietary Guidelines for Cancer Prevention Regardless of BMI Category

BackgroundCancer risk is determined by specific factors, including body weight and dietary patterns. Accordingly, the World Cancer Research Fund/American Institute for Cancer Research published updated cancer prevention recommendations in 2018 based on comprehensive reviews of modifiable behaviors associated with cancer risk.ObjectiveThe objective of this study was to determine the extent to which US adults meet these evidence-based recommendations and how adherence differs by weight status.DesignThis was a cross-sectional study using nationally representative data from the 2005-2016 National Health and Nutrition Examination Survey (NHANES).Participants/settingDietary intake data for 30,888 adults 18 years and older with normal body mass index (BMI), overweight, or obesity were analyzed.Main outcome measuresDifferences in dietary intakes and the proportion of adults meeting guidelines were compared across BMI categories.Statistical analyses performedLogistic regression and 1-way analysis of covariance were used to analyze differences in adherence to recommendations, controlling for age, sex, race/ethnicity, and family income as a percent of the federal poverty rate.ResultsRegarding fruit and nonstarchy vegetables, 62.8% of adults with normal BMI, 64.5% with overweight, and 70.1% with obesity fell short of recommendations. Regarding whole grains, 67.9% of adults with normal BMI, 70.2% with overweight, and 73.1% with obesity did not meet the recommendation. Regarding red meat, 36.7% of adults with normal BMI, 41.6% with overweight, and 43.5% with obesity consumed >18 oz/week, with a significant difference in mean intakes between adults with normal BMI and obesity (P < .001). Adults with obesity consumed significantly less dietary fiber and more processed meat than adults with normal BMI and overweight (P < 0.001).ConclusionsFew U.S. adults meet cancer prevention recommendations; adults with obesity are significantly less likely to do so. Future research should evaluate compounded risk resulting from obesity and poor dietary patterns inconsistent with current evidence-based guidelines, and inform targeted interventions to address these issues.     

Early childhood educators’ perceptions of nurturing spirituality in secular settings

ABSTRACT

In-service early childhood educators (n?=?33) completed a survey describing their perceptions towards: (a) how educators draw on personal spirituality to support their role in the classroom, (b) what curricular activities, interactions or experiences educators believe relate to nourishing children’s spirituality, (c) how the classroom environment or schedule may support children’s spirituality, and (d) how school culture may be related to supporting children’s spirituality. Findings suggest that educators believe opportunities for creative expression and free play, engagement with nature, contemplative practices (e.g. mindfulness), relationship building and moral/character development are related to nourishing children’s spirituality. Expressions of personal spirituality for the surveyed educators include treating colleagues and children well, intentionally providing a good example for children, use of contemplative practices and connecting with nature. There was substantial overlap found between developmentally appropriate practice and the activities educators reported as nurturing a child’s spirit. Findings suggest that discussing the spiritual nature of child development may help educators protect and enhance high-quality early learning environments in secular settings.     

Mass Media and Healthy Aging

ABSTRACT

Health effects associated with media use have largely focused on children and youth with little attention paid to adults, particularly older adults. However, adults aged 60 years and older report heavy television viewing, and unique health education challenges will be faced as the technically savvy baby-boomer cohort ages. Media health effects relevant to older adults include an established causative link with adiposity and correlations to increased risk of chronic disease, reduced physical activity, and undesirable food choice behaviors. Advertising has targeted older adults as a key market segment promoting anti-aging and health related products, with potential negative body image impacts. Implications for health practitioners and research are discussed in the context of these consequences.     

Physical activity mediates the protective effect of the Mediterranean diet on children's obesity status: The CYKIDS study

ObjectiveThere is some evidence regarding the association between adherence to the Mediterranean diet (MD) and obesity among adults; to our knowledge, however, no relevant data exist for children. We investigated the association between adherence to the MD and obesity status in children.MethodsA national cross-sectional study among 1140 children (mean age 10.7 ± 0.98 y) was carried out in Cyprus using stratified multistage sampling design. Body mass index was calculated according to International Obesity Task Force criteria, from parental reference. Adherence to the MD was assessed by the Mediterranean Diet Quality Index for children and adolescents (KIDMED diet score). To test the research hypothesis, a logistic regression analysis was applied with two dependent variable categories of obesity status, normal weight (NW) versus overweight/obese (OW/OB), and the three categories of the KIDMED score independently, after controlling for several potential confounders.ResultsCompared with low MD adherers, children with a high KIDMED score were 80% less likely to be OW/OB (95% confidence interval 0.041–0.976), adjusted for age, gender, parental obesity status, parental educational level, and dietary beliefs and behaviors (model 2). When physical activity was taken into account, however, the aforementioned relation was not significant (model 3; odds ratio 0.20, 95% confidence interval 0.021–1.86). Furthermore, male gender, maternal obesity, and dietary beliefs and behaviors emerged as more significant in predicting obesity in children compared with their KIDMED score.ConclusionAdherence to the MD is inversely associated with obesity in this sample of 9- to 13-y-old children; however, other behaviors, and in particular physical activity, maternal obesity, dietary beliefs and behaviors, seem to be more significant.     

A systematic review of associations among religiosity/spirituality and adolescent health attitudes and behaviors

PurposeTo systematically review and synthesize literature concerning the relationships among religiosity, spirituality, health attitudes, and health behaviors in adolescents.MethodsForty-three studies between 1998 and 2003 were systematically reviewed to (a) determine if the studies were based on conceptual or theoretical frameworks, (b) identify the types of religiosity and spirituality measures used as well as their effects on health attitudes and behaviors, (c) evaluate the quality of these measures, (d) determine categories and frequency of measures of health attitudes and behaviors, (e) evaluate the quality of the research designs, and (f) determine the effects of religiosity or spirituality on adolescent health attitudes and behaviors.ResultsOver half (n = 26) the studies were atheoretical or had an unclear framework and the other half were based on a wide variety of conceptual and theoretical models. A total of 37 distinct religiosity/spirituality variables were identified and varied in specificity. Less than half (n = 21) reported reliability of the measures and only seven contained information about validity of the measures. All 43 studies included measures of health-risk behaviors and/or attitudes but only seven addressed health-promoting behaviors. Most studies (84%) showed that measures of religiosity/spirituality had positive effects on health attitudes and behaviors.ConclusionsThe variety of studies and measures indicate that religiosity and spirituality may be important correlates of adolescent health attitudes and behaviors. Although the majority of the studies reviewed were well designed, there was no consistency in the theoretical bases and operational definitions of religiosity/spirituality phenomena.     

Adherence to treatment in children and adolescent patients with cystic fibrosis

PurposeThe purpose of this study was to monitor medication adherence in cystic fibrosis (CF) patients and its correlation with disease severity and patient age.MethodsChildren less than 12 years of age (group 1) and adolescents 12 years of age and older (group 2) were recruited from the University of Michigan CF Center. The study duration was 3 months. A total of 22 patients per group were enrolled. Adherence to ADEKs, an oral multivitamin, and dornase alfa, a nebulized mucolytic medication, was monitored. Adherence to ADEKs was monitored by using the Medication Event Monitoring System (MEMS) SmartCaps (APREX, AARDx, Inc., Union City, California). Dornase alfa adherence rate was monitored by counting empty medication vials.ResultsThirty-three patients completed the study, 15 patients in group 1 and 18 patients in group 2. The overall mean adherence rates for ADEKs and dornase alfa were (± SD) 63.6% ± 24.0% and 66.5% ± 31.2%, respectively. The median ADEKs and dornase alfa adherence rate for group 1 was 84.6% and 79.1%, respectively (p = .08); and for group 2 was 56.7% vs. 78.4%, respectively (p = .07). There was a trend toward significance, suggesting that the adherence rate for ADEKs was higher than for dornase alfa (p = .08) in group 1. Group 2 showed a trend toward adherence to dornase alfa than to ADEKs (p = .07). There was a trend for ADEKs adherence between groups 1 and 2 (p = .09), but not for dornase alfa (p = .93).ConclusionParental supervision and disease severity are likely to play a major role in adherence to medical management. Partnership with patients and families about the treatment plan might be important for improving adherence rate. The MEMS SmartCaps is an electronic monitoring technology that should be used to measure drug adherence objectively both in further larger clinical trials and in the outpatient setting.     

Cause of death in adults with Down syndrome in the United States

BackgroundPrior studies report anomalous cause of death patterns for adults with Down syndrome, but do not provide comparison of age trends for specific causes of death between adults with and without Down syndrome, or explore biological sex and racial-ethnic differences in causes of death among adults with Down syndrome.ObjectiveTo better understand cause of death trends for adults, age 18 and over, with Down syndrome.MethodsCross-sectional data were from the 2013–2017 US Multiple Cause of Death Mortality files. Adjusted odds ratios were utilized to compare cause of death trends overall, and by age, between adults with (N = 9870) and without (N = 13,323,001) Down syndrome. We also analyzed biological sex and race-ethnic differences in cause of death solely among adults with Down syndrome.ResultsAlthough heart disease, dementia and Alzheimer’s disease, and cancer were common among adults all adults, death from these diseases was more prominent at younger ages for adults with Down syndrome. Adults with Down syndrome were also more likely to die from influenza and pneumonia, pneumonitis, respiratory failure, and choking at all ages. Distinct biological sex and racial-ethnic differences were present in causes of death among adults with Down syndrome.ConclusionsWhile efforts to reduce premature mortality for adults with Down syndrome should attend to common risk factors such as heart disease, dementia and Alzheimer’s disease, and cancer, it is imperative to afford increased attention to earlier onset of these diseases, as well as increased risk of death from respiratory and swallowing/choking related disorders at all ages.