Cystic Fibrosis Kidney Disease: 10 Tips for Clinicians

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

Same Old New Normal: The Ableist Fallacy of “Post-Pandemic” Work

The ongoing Covid-19 pandemic has catalyzed long-needed changes in accessibility and flexibility for work tasks. Disabled and chronically ill people have often experienced unprecedented inclusion during this time. As someone who is both disabled and chronically ill, I have experienced this firsthand. My work as a medical educator, public health program evaluator, and community advocate has been more accessible in recent months than at any prior time. As the pandemic escalated in early 2020, people readily embraced a “new normal” that would allow them to sustain their own livelihoods while staying as safe as possible. Yet even as Covid-19 cases increase sharply both locally and nationally with the spread of the Delta virus variant, many abled people from both my institution and others increasingly demand a return to pre-pandemic practices. The “normal” state for which abled individuals ardently long violates the basic human rights of disabled and chronically ill people. This desire for “normalcy” is fueled by false notions of the pandemic being over. It remains preferred by many for the sake of their own comfort—even though sustaining the inclusive approaches to collaboration introduced during the pandemic often requires little effort and offers advantages for abled people as well. This experiential piece describes ableist implications of seeking “post-pandemic” work environments—and how these constitute “generic processes” in the reproduction of ableism—using both oral history from the author and emerging literature from fellow scholars. In response, it recommends inclusive strategies for anti-ableist work collaboration that achieve justice in accessibility while fostering a welcome sense of normalcy for all

Coming Full Circle: Reflections and Inspirations from a Cystic Fibrosis Patient Scientist Panel

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

Posterior Decompression and Fusion: Whole-Spine Functional and Clinical Outcomes

The mobility of the spine and the change in the angle of the curvatures are directly related to spinal pain and spinal stenosis. The aim of the study was the evaluation of morphology and mobility of the spine in patients who were subjected to decompression and posterior fusion with pedicle screws. The treatment group consisted of 20 patients who underwent posterior fixation of lumbar spine (one and two level fusion). The control group consisted of 39 healthy subjects. Mobility and curvatures of the spine were measured with a non-invasive device, the Spinal Mouse. Pain was evaluated with the Visual Analogue Scale (VAS). The Oswestry Disability Index (ODI) and the SF-36 were used to evaluate the degree of the functional disability and the quality of life, respectively. The measurements were recorded preoperatively and at 3, 6 and 12 months postoperatively. The mobility of the lumbar spine in the sagittal plane increased (p = 0.009) at 12 months compared to the measurements at 3 months. The mobility of the thoracic spine in the frontal plane increased (p = 0.009) at 12 months compared to the preoperative evaluation. The results of VAS, ODI and SF-36 PCS improved significantly (p<0.001). The levels of fusion exhibited a strong linear correlation (r = 0.651, p = 0.002) with the total trunk inclination in the upright position. Although pain, quality of life and spinal mobility in the sagittal and frontal planes significantly improved in the treatment group, these patients still had limited mobility and decreased curves/angles values compared to control group

Aging Partners Managing Chronic Illness Together: Introducing the Content Collection

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

Childhood Socioeconomic Status and Stress in Late Adulthood: A Longitudinal Approach to Measuring Allostatic Load

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

African-American Lay Pastoral Care Facilitators’ Perspectives on Dementia Caregiver Education and Training

The African-American Alzheimer’s Caregiver Training and Support Project 2 (ACTS 2) is a faith-integrated, skills-training and support program for distressed African American family caregivers of persons living with dementia across Florida. Caregivers participate in a 12-week, telephone-based, skills-building and support program led by faith community workers (i.e., lay pastoral care facilitators) who provide volunteer services to their denominations. In this case study, we examined facilitators’ perspectives and recommendations for supplementary audiovisual and written training materials to optimize group process and goal-setting skills. Utilizing a qualitative approach, we explored facilitators’ needs, experiences in using current training materials, and recommendations for supplementary education. Data were collected through a telephone-based, focus group interview with nine ACTS 2 facilitators deploying grounded theory techniques. We identified six themes: personal reflections on facilitator roles and responsibilities, satisfaction with existing written materials, desire for supplementary audiovisual training materials, desire for additional training on data management and reporting, importance of peer support, and fostering a faith-integrated culture within the program. Our findings underscore the importance of engaging African American faith communities in fostering dementia caregiving skills training and support. We further highlight the implications of providing community-based training for African American facilitators to foster caregiver emotional well-being and physical health

Illness Management in Older Lesbian, Gay, Bisexual, and Transgender Couples: A Review

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