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1.
Aging Ment Health ; : 1-9, 2024 Jul 10.
Article in English | MEDLINE | ID: mdl-38982841

ABSTRACT

OBJECTIVES: Transgender and gender nonconforming (TGNC) older adults experience significant behavioral health and healthcare disparities. Facilitators that contribute to positive behavioral healthcare experiences among this population, however, remain uncertain. In this study, we investigate facilitators contributing to positive or satisfactory behavioral healthcare experiences among a sample of TGNC older adults in the United States (US). METHOD: Between September 2021 and January 2022, the first author conducted 47 semi-structured, individual interviews with TGNC adults aged 65 years or over in the US. Using an inductive grounded theory approach, we examined respondents' positive or satisfactory experiences with accessing and utilizing behavioral health services, support, and resources. Analyses were conducted using NVivo (Release 1.6) software. RESULTS: Findings underscore the importance of addressing the specific or unique needs of TGNC older patients to promote positive or satisfactory experiences in behavioral healthcare. Three themes emerged: (1) engaging with behavioral healthcare practitioners who offer compassionate, patient-centered care; (2) accessing and utilizing culturally tailored peer-support groups; and (3) receiving equitable access to gender-affirming care and social services. CONCLUSION: These findings highlight opportunities for expanding and incorporating these identified facilitators into behavioral healthcare research and practice, especially when promoting gender affirmation in care for TGNC older patients.

2.
Cureus ; 15(1): e33881, 2023 Jan.
Article in English | MEDLINE | ID: mdl-36819399

ABSTRACT

In a poll of 714 US physicians, it was revealed that only 40.7% felt very confident in their ability to provide the same quality of care, overall, to patients with disabilities (PWDs) compared with patients without disabilities. It was also found that only 56.5% strongly agreed that they welcomed PWDs into their practice as healthcare providers. This suggests a systemic issue of inequity in medicine, which affects both physicians and patients. If this problem is not corrected, our healthcare system will continue to lack in providing adequate care to PWDs. A key component of this issue is that the lack of confident care for PWDs appears to be a result of insufficient exposure to PWDs during the formative years in medical schools. Although medical students are taught extensive clinical skills and bedside manners, there appears to be little mention of how to make adaptations to basic patient encounters to accommodate PWDs. Further, the lack of representation of PWDs in the medical community results in minimal experience among trainees and the perpetuation of unjust biases in the healthcare system. Changes to the medical field must start with shaping future physicians and filling the void in medical education. As a solution, we at Florida State University (FSU) College of Medicine (COM) propose a program called the Disability Advocacy and Awareness Program (DAAP). Two interactive sessions were designed, and students were offered an immersive experience in which they were not only provided with information through well-crafted presentations but also encouraged to engage in direct interactions with PWDs and a myriad of assistive devices. We believe a great deal of the program's success stemmed from the two-phase interactive model that allowed students to undergo a truly immersive experience that a textbook cannot endow. Although we cannot expect every provider to be an expert on all disabilities, all physicians should have an understanding of how a disability may impact a patient's life and medical care. Improved knowledge and awareness surrounding disability and the barriers faced by the PWD population will provide insights that will allow for the most equitable, patient-centered care for the disabled community.

4.
Rehabil Psychol ; 67(4): 437-448, 2022 Nov.
Article in English | MEDLINE | ID: mdl-36355638

ABSTRACT

PURPOSE/OBJECTIVE: The purpose of this study was to conduct an initial evaluation of the quantitative and qualitative outcomes of the African American Alzheimer's Caregiver Training and Support Project 2 (ACTS2). Quantitative objectives focused on assessing changes in caregiver depression and health status, as well as the severity of caregiving and self-care problems from pre- to postintervention. Secondary quantitative analyses examined posttreatment changes in social support and caregiver burden. Qualitative objectives included examining caregivers' perceptions of the effectiveness of in-session training activities, quality of relationships among group participants and their facilitator, and appraisals of spiritual elements of the program. RESEARCH METHOD/DESIGN: Nine African American family caregivers of older adults with dementia completed the ACTS2 lay pastoral care facilitator-led, telephone cognitive-behavioral intervention. The 12-week training program included seven skills-building groups and five individual problem-solving sessions. RESULTS: Significant improvements were found on the majority of dependent measures, including caregiver depression, health status, problem severity, and social support. Qualitative analysis highlighted the value caregivers placed on relationships with coparticipants and group facilitators, the role of spirituality in the program, and the importance of goal setting for improving caregiver distress and self-care. CONCLUSIONS/IMPLICATIONS: Convergence was found between quantitative and qualitative findings, particularly improvements in caregiver distress, health status, and social support. Overall, the findings of the pilot study were promising. Replication using a randomized controlled design with a larger sample size is needed to test the reliability of the findings. The benefits of tailoring intervention to caregivers' sociocultural preferences and spiritual values are also addressed. (PsycInfo Database Record (c) 2022 APA, all rights reserved).


Subject(s)
Alzheimer Disease , Caregivers , Humans , Aged , Pilot Projects , Black or African American , Reproducibility of Results
5.
Inquiry ; 59: 469580221086921, 2022.
Article in English | MEDLINE | ID: mdl-35420504

ABSTRACT

Care for many progressive chronic diseases continues to improve, allowing patients to survive and thrive for longer periods of time1. People living with such conditions may now find themselves able to achieve long-term goals in education and career development2. Many people now occupy the dual roles of scientist and patient3. This commentary article synthesizes experiences of scientists and advocates with the progressive genetic disease cystic fibrosis (CF) who collaborated on a career development session for the Cystic Fibrosis Foundation's inaugural ResearchCon event in 2019. It explores how such collaborations affirm and transform individual perspectives on patient science and its importance in broader scientific research agenda setting. We first share our own individual insights about the experience and impact of the ResearchCon panel session before progressing to discussion and future directions centering the shared insights from one another's reflections.


Subject(s)
Cystic Fibrosis , Physicians , Chronic Disease , Cystic Fibrosis/genetics , Humans
6.
Int J Transgend Health ; 22(1-2): 141-153, 2021.
Article in English | MEDLINE | ID: mdl-34725654

ABSTRACT

BACKGROUND: Transgender and non-binary people experience erasure, stigma, and discrimination in sexual and reproductive health care. Previous research shows worse sexual and reproductive health outcomes and higher rates of chronicity for trans and non-binary populations as compared to cisgender populations. Historically such outcomes have been framed as separate issues. AIMS: To describe methodological approaches for exploring gaps in the sexual and reproductive health care of transgender and non-binary people, and explore intersections between chronic disease management and gender-affirming care. METHODS: We critically reviewed methods for studying sexual and reproductive care and chronic condition management among trans and non-binary populations. We focus on two themes: unmet needs and response strategies. RESULTS: We summarize findings and opportunities in existing research about service needs in trans and non-binary care. Key barriers to effective sexual and reproductive care for trans and non-binary people include persistent medical myths about trans people and bodies, siloization of different domains of health and associated services, lack of research on how chronic disease treatments interact with transition related care, and lack of active communication between providers and patients about individual care needs and goals. DISCUSSION: We recommend methodologically diverse research with trans and non-binary populations capturing: (1) erasure, stigma, and discrimination in sexual and reproductive health care settings; (2) individual, interpersonal, and structural factors catalyzing chronicity; and (3) the impact of sexual and reproductive health disparities on chronic disease outcomes.

7.
J Gerontol B Psychol Sci Soc Sci ; 76(4): e230-e234, 2021 03 14.
Article in English | MEDLINE | ID: mdl-32766805

ABSTRACT

As the COVID-19 pandemic continues to affect communities worldwide, this novel disease is leaving many survivors with severe lung damage. Among older patients, advanced lung damage is more likely. Survivors of all ages who have extensive lung impacts are likely to be new to managing those issues. Supporting healthy aging for these patients will require both gathering data about their unique experiences and using the existing evidence basis about adapting to managing obstructive lung disease. This article outlines key priorities for research with COVID-19 survivors aging with permanent lung damage and highlights unique considerations for people older at age of onset. It also outlines the relevance of findings from this research for clinical care supporting people newly aging with advanced lung disease from COVID-19. In the process, it summarizes lessons from established patient populations aging with progressive lung disease-using cystic fibrosis as a prominent example from the author's lived experience-that may enhance the experiences of older COVID-19 survivors.


Subject(s)
COVID-19/physiopathology , Lung Injury/epidemiology , Survivors/statistics & numerical data , Aged , COVID-19/complications , COVID-19/epidemiology , Humans , Male , Pneumonia, Viral/epidemiology , Pulmonary Disease, Chronic Obstructive , Severity of Illness Index
8.
Womens Health (Lond) ; 15: 1745506519878092, 2019.
Article in English | MEDLINE | ID: mdl-31564223

ABSTRACT

This article complements emerging reviews and summaries of the recent expansion of sexuality studies within and beyond geriatrics and associated fields. To this end, we synthesize important insights and discussions taking place throughout geriatrics and other fields at present, and situate these conversations in broader discussions concerning sexualities, health, and aging. In so doing, we outline some gaps in existing work as well as opportunities for not only filling these gaps in our understandings of women's sexual health in later life but also in order to demonstrate the usefulness of expanding prior approaches to analyses concerning womanhood, aging, sexualities, and health over the life course. In conclusion, we outline some specific pathways for future research concerning women's sexual health in later life.


Subject(s)
Sexual Behavior , Sexual Health , Sexuality , Aging , Female , Humans
9.
Gerontol Geriatr Med ; 5: 2333721418822865, 2019.
Article in English | MEDLINE | ID: mdl-30729149

ABSTRACT

More openly sexually and gender diverse people are aging into later life across the world as generational transitions occur. People identifying many different ways beyond cisgender and heterosexual are diverse with respect to many other characteristics and sociopolitical locations across the globe and may thus experience a wide array of health journeys both individually and as partners in intimate relationships. In this review article, we summarize the major contributions of and ongoing gaps in existing studies about such couples' experiences of chronic disease management in later life. We focus on three key groups of findings from prior research about the health of older sexually and/or gender diverse couples: care practices, unmet needs, and diverse resources. We outline priorities for future research within and across these topic areas and in varied locations, with unique recommendations for scholars in both academic and clinical settings. These recommendations support greater integration of such populations, topics, and needs in existing discourse on aging and late life. Likewise, recommendations from this review illuminate potential best practices for engaging and serving these elders in both academic and applied settings.

10.
Sociol Health Illn ; 41(4): 723-739, 2019 05.
Article in English | MEDLINE | ID: mdl-30671982

ABSTRACT

In this collaborative autoethnography, we examine the processes whereby people may reframe their interpretations and understandings of health and illness as a result of new diagnostic information. In so doing, we utilise the first author's experience receiving a conclusive diagnosis of cystic fibrosis after years of misdiagnosis to outline some ways changes in diagnosis facilitate shifts in illness management, the nature of health and illness and the experience of the self in relation to health and medicine. Furthermore, we discuss the ways this case reveals the importance of examining and comparing the social construction and transformation of health and illness within and between different individual and collective lived experiences over time. In closing, we draw out theoretical and empirical implications for understanding transformations in the nature of health and illness over the life course as well as future directions for research investigating shifts in illness management and understanding over time (A virtual abstract of this paper is available to view at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA).


Subject(s)
Chronic Disease , Cystic Fibrosis/diagnosis , Health Status , Illness Behavior , Anthropology, Cultural , Disease Management , Female , Humans , Life Style
11.
Front Med (Lausanne) ; 5: 242, 2018.
Article in English | MEDLINE | ID: mdl-30211168

ABSTRACT

Increased longevity in people with cystic fibrosis (CF) means that more people are surviving long enough to develop kidney complications. Nephrologists and their colleagues now face a steep learning curve as many of them encounter patients with CF related kidney disease (CFKD) for the first time. This article presents perspectives from a medical sociologist with CF on what renal health professionals should know about people with CFKD. It outlines challenges that people with CFKD as they age, framing these struggles as opportunities for clinicians to help these unique patients achieve and maintain their best possible quality of life.

12.
Glob Pediatr Health ; 4: 2333794X17744950, 2017.
Article in English | MEDLINE | ID: mdl-29226194

ABSTRACT

Objectives: This study examines how the effects of childhood socioeconomic status (SES) may carry on into late adulthood. Methods: We examine how childhood SES affects both perceived stress and allostatic load, which is a cumulative measure of the body's biologic response to chronic stress. We use the National Social Life, Health, and Aging Project, Waves 1 and 2, and suggest a novel method of incorporating a longitudinal allostatic load measure. Results: Individuals who grew up in low SES households have higher allostatic load scores in late adulthood, and this association is mediated mostly by educational attainment. Discussion: The longitudinal allostatic load measure shows similar results to the singular measures and allows us to include 2 time points into one outcome measure. Incorporating 2 separate time points into one measure is important because allostatic load is a measure of cumulative physiological dysregulation, and longitudinal data provide a more comprehensive measure.

13.
Gerontol Geriatr Med ; 3: 2333721417737679, 2017.
Article in English | MEDLINE | ID: mdl-29119129

ABSTRACT

Prior literature on illness management within intimate relationships demonstrates a variety of benefits from supportive partnership. Indeed, much of the earliest research in this field engaged older adults with and without chronic conditions. However, this pioneering literature gave little consideration to relationships in which multiple partners were coping with chronic illness. By contrast, the majority of published manuscripts presented a "sick partner/well partner" model in which caregiving flowed only in one direction. Yet this idea makes little sense in the context of contemporaneous data on population aging and health as a majority of older adults now live with at least one chronic condition. Scholars still have not delved explicitly into the experiences of the vast population of older relationship partners who are managing chronic conditions simultaneously. We thus welcome Gerontology and Geriatric Medicine readers to this special content collection on Aging Partners Managing Chronic Illness Together.

14.
Fam Pract ; 34(3): 322-329, 2017 06 01.
Article in English | MEDLINE | ID: mdl-28387794

ABSTRACT

Objective: To explore the success of community-based participatory research [CBPR] in engaging African American women to achieve health equity by elucidating community, trust, communication and impact. Recommendations helpful for researchers interested in engaging communities to achieve health equity in the USA are included. Inroduction: African American women experience health disparities of multifactorial etiology and are underrepresented in research. CBPR is a collaborative approach that incorporates perspectives, which address the intricate determinants of health and has been reported as an effective means to address health disparities. Yet, the science of CBPR seems elusive to researchers in the medical field. The opportunity exists to better understand and expand the use of the principles of engagement, replication, and sustainability in engaging African American women in health research. Methods: A variety of literature regarding engaging African American women in community-based participatory research was reviewed. Results: CBPR focused on robust engagement of marginalized groups continues to be validated as a vital approach to the elimination of disparities and improved health for all, especially ethnic and racial minority populations. However, limited evidence of focused engagement of African American women was found. Making specific outreach to African American women must be a community and patient engagement priority to achieve health equity. Conclusions: Continued research is needed which specifically focuses on building and sustaining engagement with African American women and their communities. This research can transform healthcare access, experiences and outcomes by yielding actionable information about what African American women need and want to promote wellness for themselves and their communities.


Subject(s)
Black or African American , Community-Based Participatory Research/methods , Health Status Disparities , Social Determinants of Health , Communication , Female , Humans
15.
J Racial Ethn Health Disparities ; 4(3): 410-417, 2017 06.
Article in English | MEDLINE | ID: mdl-27287275

ABSTRACT

Understanding the biosocial context of menopausal timing offers insight into social and health inequalities. Prior research on inflammatory chronic conditions suggests that inflammation may predict how early women experience menopause. We explore the ability of black race to moderate the overall relationship between chronic inflammation and timing of menopause. We use data from the National Social Life, Health, and Aging Project on inflammation, age of last menstruation, and race as well as relevant social and medical covariates. We conduct event history modeling to predict age at menopause by inflammatory biomarker levels. Using interaction analysis, we investigate whether being black may shape the overall relationship between inflammation status and menopause timing. Our analyses find no significant statistical interactions between black race and inflammation in predicting menopausal onset. However, we do identify independent correlational relationships between inflammation and black race (r = 0.136) and between menopausal timing and black race (r = -0.129) as well as inflammation (r = -0.138) that emerge as significant in corresponding regression models. We conclude that race probably does not moderate associations between inflammation and menopause. Yet, we also note that the original parameter estimate for black race's impact on menopausal onset (HR = 1.29, p < 0.05) becomes non-significant in a model that includes inflammation (HR = 1.06, p < 0.01). To translate our findings into policy and practice implications, we present alternate conceptualizations of black-white disparity in the inflammation-menopause relationship and recommend future research using mediation modeling.


Subject(s)
Black or African American/statistics & numerical data , Inflammation/epidemiology , Menopause , White People/statistics & numerical data , Age Factors , Aged , Aged, 80 and over , Female , Humans , Middle Aged , United States/epidemiology
16.
J Racial Ethn Health Disparities ; 4(6): 1128-1137, 2017 12.
Article in English | MEDLINE | ID: mdl-27924623

ABSTRACT

We assess how well differences in ethnoracial background may predict timing of menopause among females in the USA and whether or not inflammatory biomarker levels appear to mediate these overall associations. We use data from the National Social Life, Health, and Aging Project (NSHAP) to model apparent net effects from race on menopausal onset, as well as possible mediating influences from the inflammatory biomarker C-reactive protein (CRP). Using continuous time event history analysis, we assess and frame overall relationships between race and menopausal age. We use structural equation modeling to assess potential mediating effects from CRP and to estimate direct and indirect components of these apparent effects. Our findings suggest that on average, black females experience menopause earlier than their peers of other racial backgrounds, and have higher inflammatory biomarker levels. Both black race and higher CRP have negative and significant direct associations with menopausal age. CRP appears to partially mediate the overall association between black race and earlier menopause. This apparent mediation persists with statistical controls for income, education, and body mass index. Our study concludes with recommendations for future research on racial identity, inflammation, and menopausal onset. We focus our recommendations on intersectional forms of inequality that may affect black females in later life.


Subject(s)
Black or African American/statistics & numerical data , Health Status Disparities , Inflammation/ethnology , Menopause/ethnology , Aged , Aged, 80 and over , Biomarkers/blood , C-Reactive Protein/metabolism , Female , Humans , Inflammation/metabolism , Middle Aged , United States
17.
Front Public Health ; 4: 39, 2016.
Article in English | MEDLINE | ID: mdl-27014676

ABSTRACT

In 2011, the Florida Asthma Coalition (FAC) began offering its Asthma-Friendly Childcare Center (AFCC) training online. This course teaches childcare center employees the fundamentals of effective asthma management. It covers basic asthma physiology, ways to recognize asthma attacks, techniques to help children experiencing attacks, and strategies to create healthy environments for asthmatics. A team of health services researchers evaluated both years of the online training. Evaluators used a quasi-experimental design with pretest, posttest, and follow-up assessment. Questions measured knowledge gain and retention, user satisfaction, and implementation of management strategies. Over 650 people from nearly all 67 Florida counties took AFCC training online between 2011 and 2013. Test scores improved by a minimum of 11% points in all program years evaluated. Gains in both knowledge and confidence were substantial and highly significant across years. While individual trainees did forget some content on follow-up, they seemed to retain the specific messages most relevant for their own workplaces. Most trainees also planned to implement multiple management strategies recommended by the training. A large majority of participants rated the training as excellent on all quality metrics, including relevance of content and time efficiency of the online format. Nearly all respondents perceived the training as useful for both providing improved care and fulfilling licensure or certification requirements. Many participants also indicated that their centers would pursue formal certification as AFCCs via the program offered by FAC. The online AFCC course performed strongly in its first years, yielding both high participant satisfaction and substantial improvement in workplace asthma management activity. This training holds promise for introducing and improving multidimensional asthma management strategies at childcare facilities nationwide.

18.
Health Qual Life Outcomes ; 14: 46, 2016 Mar 22.
Article in English | MEDLINE | ID: mdl-27001461

ABSTRACT

BACKGROUND: This article summarizes exploratory analyses of relationships between chronic inflammation, its physical consequences, and quality of life (QoL). It summarizes key findings from preliminary analyses, and contextualizes these results with extant sociomedical literature to recommend directions for future research. METHODS: Cross-sectional data from the National Social Life, Health, and Aging Project (NSHAP) were used to explore these relationships. Inflammation was assessed via the biomarker C-reactive protein (CRP). We examined associations between CRP levels and two different domains of QoL: happiness with life in general and happiness with intimate relationships. We used ordinal logistic regression with companion OLS models and Sobel-Goodman tests to assess potential mediation, and also conducted a variety of sensitivity analyses. RESULTS: Findings suggest that mediation pathways for the overall association between chronic inflammation and QoL may differ markedly across particular outcome constructs. Specifically, it shows mediation potential for the clinical sequelae of chronic inflammation in frameworks using happiness as an outcome measure, but not in those using relationship satisfaction. Disability appears to mediate the effect of inflammation by 27 %; chronic pain appears to exert a similar mediation effect of 21 %. CONCLUSIONS: Pain and disability linked to chronic inflammation appear to play a small but significant mediating role in the overall reduction in QoL observed among older adults with biomarker evidence of chronic inflammation. We note that these patterns are best framed as dynamic elements of a complex causal fabric, rather than powerful determinants that override other factors contributing to QoL. Hypotheses for further exploration using longitudinal data from the NSHAP are thus offered, pending availability of Wave III data in future years.


Subject(s)
Aging/psychology , Chronic Pain/psychology , Inflammation/psychology , Quality of Life/psychology , Aged , Aged, 80 and over , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , United States
19.
Sociol Health Illn ; 38(6): 899-915, 2016 07.
Article in English | MEDLINE | ID: mdl-26865093

ABSTRACT

In this autoethnography, I explore the process and emotional experience of trying a new drug to improve my quality of life. In so doing, I synthesise personal history with extant research on chronic illness by analysing ways in which my experiences reflect and reject social norms. I also incorporate perspectives from research on aspirations and attainment, and the mental health consequences of cyclical disappointment. By weaving together lessons from each of these literatures, I articulate an integrative psychosocial understanding of the micro-level processes and experiences involved in illness management as well as the ways that experiences of illness management may require integration of varied sociological insights concerning health. In closing, I draw out theoretical implications for understanding the integration and variation of insights from many areas of health research in the lived experiences of people with chronic conditions. A Virtual Abstract of this article can be seen at: https://youtu.be/5aoaWGItDgM.


Subject(s)
Attitude to Health , Chronic Disease/psychology , Disease Management , Hope , Adaptation, Psychological , Adult , Anthropology, Cultural , Emotions , Female , Humans , Mucositis/diagnosis , Mucositis/psychology
20.
Front Public Health ; 4: 11, 2016.
Article in English | MEDLINE | ID: mdl-26870724

ABSTRACT

Florida Asthma Program staff worked with evaluators from the Florida State University College of Medicine to assess participation and quality of the American Lung Association's Asthma 101 asthma management education program for school faculty and staff between 2011 and 2014. This included transitioning the program to an online training format for the 2013-2014 school year. Asthma 101 helps school personnel master the basics of asthma physiology and management, with content tailored specifically for elementary and secondary educational settings. The program is assessed with questionnaires at multiple timepoints, yielding a quasi-experimental evaluation design. Evaluators reviewed quantitative data from pretests and qualitative and quantitative data from post-program satisfaction questionnaires. Program spreadsheets listing the dates for delivery and number of attendees were also reviewed. Overall, evaluation findings were positive. In the 2011-2012 program year, 16 different course sessions were offered, and more than half of enrolled participants came from Title I schools. A total of 228 people were trained. In the 2012-2013 program year, 19 different course sessions were offered. Enrollment totals (638) and matching pre- and posttest totals (562) soundly exceeded the target metric of 425. At least 170 (27%) of a total of 638 participants could be verified as coming from the target demographic of Title I school faculty and staff. In the 2013-2014 program year, the course was offered online on a rolling basis via the Florida TRAIN course management system. Enrollment remained high and learner outcomes remained consistently strong across all content areas for knowledge and satisfaction. A total of 406 people participated in the training; complete pre- and posttest data were available for 341 of these individuals; and satisfaction data were available for 325. Of the 406 trainees, 199 (49%) reported working for Title I schools. Evaluation yielded very positive results. An overwhelming majority of participants reported finding the course consistently strong across the board and highly impactful for their own ability to help students manage their asthma effectively. Most participants also reported that they would change/improve their asthma management behaviors in the workplace. Recommendations were developed to help expand future program reach.

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