“The Health System Just Wasn't Built for Us”: Queer Cisgender Women and Gender Expansive Individuals' Strategies for Navigating Reproductive Health Care

BackgroundThe LGBTQ health disparities literature documents barriers to comprehensive and queer-inclusive care. Queer cisgender women and gender expansive individuals assigned female at birth experience myriad health disparities related to reproductive health, in part owing to the health care system. However, few studies have examined how queer individuals cope with and overcome barriers to queer-competent reproductive health care. This study aims to understand the strategies queer cisgender women and gender expansive individuals use to meet their reproductive health needs.MethodsInvestigators conducted interviews with 22 queer cisgender women and gender expansive individuals assigned female at birth about their experiences seeking reproductive health care services. We used inductive coding and thematic analysis to identify themes related to meeting reproductive health and health care needs.ResultsFindings highlight the prevalence of negative and harmful experiences while seeking reproductive health care. In response to these negative experiences, individuals developed active strategies to meet their health needs, including seeking information and community, seeking alternative models of care, and managing identity disclosure. Importantly, these strategies varied in effectiveness, depending on participants' social and economic advantage.ConclusionsQueer individuals face numerous barriers to queer-competent reproductive health care when seeking reproductive health services. While queer patients are often resilient and creative, developing strategies to get their needs met, the presence of such strategies highlights the need for structural changes in the health system to better serve queer patients.     

Identification of targets for improving access to care in persons with long term physical disabilities

BackgroundPeople with long-term physical disability (LTPD) continue to experience difficulties in accessing health care despite the focus of highlighting disparities in the last two decades.ObjectivesTo describe health care utilization, accommodations and barriers experienced while accessing health care, and reasons why individuals delay or skip health care among people with LTPD.MethodsThe current study was a part of a larger longitudinal survey administered to individuals with physical disability associated with one of four long-term conditions (MS; SCI; PPS; MD). Measures included demographics, health care utilization, barriers to health care, and reasons for delaying or skipping medical care from the sixth wave of data from 2015 to 2016.ResultsRoughly 90% of all participants (N = 1159) saw at least one medical provider within 12 months. The most encountered barrier participants reported experiencing within that time was an office that did not have a safe transfer device to move them to an exam table (69%). Participants’ physical function, quality of life, status of living with a spouse, diagnostic condition, and sex (male) were significantly associated with endorsing a barrier in accessing health care. The inability to afford out of pocket expenses was the highest reported reason for delaying health care.ConclusionsPeople with LTPD access a variety of health care, including rehabilitation services, and continue to experience barriers when doing so. While understanding barriers individuals experience when accessing health care is important, it is equally important to document the type of care they delay or skip due to barriers.     

Facilitators and barriers to person-centered planning from the perspectives of individuals receiving medicaid home and community-based services and care managers

BackgroundWhile person-centered planning is required within Medicaid Home and Community-Based Services (HCBS) programs, we know little about the extent to which it is being implemented and best approaches to measuring quality.ObjectiveOur study explored the experiences of individuals receiving Medicaid HCBS and care managers facilitating person-centered planning in three states to learn from their perspectives of facilitators and barriers.MethodsWe partnered with a national health plan and affiliated health plans in three states for recruitment. We used a semi-structured interview guide to conduct remote interviews with 13 individuals receiving HCBS and 31 care managers. To triangulate our findings, we reviewed assessment instruments from the three states and the person-centered care plans of HCBS recipients.ResultsFrom the perspectives of individuals receiving HCBS, facilitators to person-centered planning included: choice and control, personal goals and strengths, and relational communication. Care managers similarly identified the importance of relational communication, but also identified the development of measurable goals. Barriers from the perspectives of individuals receiving HCBS included: medical orientation of care plan, administrative and systemic barriers, and competencies of care managers. Care managers similarly identified administrative and systemic barriers.ConclusionsThis exploratory study provides important perspectives on implementation of person-centered planning. Findings can help inform improvements in policy and practice, as well as guide future directions in quality measure development and assessment.     

Adolescent access to and utilisation of health services in two regions of Côte d'Ivoire: A qualitative study

ABSTRACT

Adolescence is a critical time for physical, cognitive, social and emotional development, yet adolescents are prone to unique barriers and unmet needs for receiving proper health care services and information. This study explored barriers and facilitators to adolescent (15–19 years) access to and utilisation of health services in two regions of Côte d’Ivoire. Focus group discussions were conducted with adolescent females and males, caregivers, and health care workers at eight health facilities. Barriers and facilitators emerged within three themes: cultural, structural, and ‘accueil’, a French term encompassing overall feelings and experiences of a situation. Cultural barriers included community beliefs and stigma, and adolescent knowledge, while caregiver support and medical preference were both barriers and facilitators. Structural barriers included financial costs, distance to health facilities, waiting times, and lack of supplies and medications. Feelings of fear, shame and discomfort were barriers related to ‘accueil’ while interactions with health care workers were both barriers and facilitators. Similarities and differences in perspectives arose between groups. Future work to increase adolescent access to and utilisation of health services should take into consideration both participant recommendations and the interconnectedness of the barriers faced to create multidimensional approaches that improve health outcomes for this priority population.     

Motivation and participation in daily and social activities among adults with spinal cord injury: Applying self-determination theory

BackgroundIndividuals with a spinal cord injury (SCI) report decreased participation in daily and social activities. Self-determination theory (SDT) posits that individuals’ need satisfaction and frustration predicts participation in health-related behaviours and this relationship is mediated by their motivation.ObjectivesThis study explored the role of psychological needs and motivation in relation to participation in daily and social activities among adults with SCI. It was hypothesized that: a) need satisfaction and need frustration were positively associated with autonomous and controlled motivation, respectively, which, positively and negatively predicted participation in daily and social activities; b) autonomous and controlled motivation mediated the need satisfaction/frustration and participation relationship, respectively; and c) need frustration was positively related to amotivation, with no relationship between amotivation and activity participation.MethodsIn this cross-sectional study, adults with SCI (N = 131) completed a questionnaire regarding their need satisfaction/frustration, autonomous and controlled motivation, amotivation, and participation in daily and social activities.ResultsNeed satisfaction was positively related to autonomous motivation (β = 0.29, 95%bias-corrected confidence interval (bCI): [0.04, 0.67]) and need frustration to controlled motivation (β = 0.28, 95%bCI: [0.09, 0.55]). Autonomous motivation was positively associated with six participation categories: autonomous indoor, autonomous outdoor, family role, health, social life, and work/education. Autonomous motivation also mediated the relationship between need satisfaction and all six participation categories; whereas, neither controlled motivation nor amotivation mediated the relationship between need frustration and participation.ConclusionsThis study found that SDT provides a meaningful framework for understanding participation among adults with SCI.     

Emergency Department Care Transitions for Patients With Cognitive Impairment: A Scoping Review

ObjectivesWe aimed to describe emergency department (ED) care transition interventions delivered to older adults with cognitive impairment, identify relevant patient-centered outcomes, and determine priority research areas for future investigation.DesignSystematic scoping review.Setting and ParticipantsED patients with cognitive impairment and/or their care partners.MethodsInformed by the clinical questions, we conducted systematic electronic searches of medical research databases for relevant publications following published guidelines. The results were presented to a stakeholder group representing ED-based and non-ED-based clinicians, individuals living with cognitive impairment, care partners, and advocacy organizations. After discussion, they voted on potential research areas to prioritize for future investigations.ResultsFrom 3848 publications identified, 78 eligible studies underwent full text review, and 10 articles were abstracted. Common ED-to-community care transition interventions for older adults with cognitive impairment included interdisciplinary geriatric assessments, home visits from medical personnel, and telephone follow-ups. Intervention effects were mixed, with improvements observed in 30-day ED revisit rates but most largely ineffective at promoting connections to outpatient care or improving secondary outcomes such as physical function. Outcomes identified as important to adults with cognitive impairment and their care partners included care coordination between providers and inclusion of care partners in care management within the ED setting. The highest priority research area for future investigation identified by stakeholders was identifying strategies to tailor ED-to-community care transitions for adults living with cognitive impairment complicated by other vulnerabilities such as social isolation or economic disadvantage.Conclusions and ImplicationsThis scoping review identified key gaps in ED-to-community care transition interventions delivered to older adults with cognitive impairment. Combined with a stakeholder assessment and prioritization, it identified relevant patient-centered outcomes and clarifies priority areas for future investigation to improve ED care for individuals with impaired cognition, an area of critical need given the current population trends.     

The implementation cost of a safety‐net hospital program addressing social needs in Atlanta

ObjectiveTo describe the cost of integrating social needs activities into a health care program that works toward health equity by addressing socioeconomic barriers.Data Sources/Study SettingCosts for a heart failure health care program based in a safety‐net hospital were reported by program staff for the program year May 2018–April 2019. Additional data sources included hospital records, invoices, and staff survey.Study DesignWe conducted a retrospective, cross‐sectional, case study of a program that includes health education, outpatient care, financial counseling and free medication; transportation and home services for those most in need; and connections to other social services. Program costs were summarized overall and for mutually exclusive categories: health care program (fixed and variable) and social needs activities.Data CollectionProgram cost data were collected using a activity‐based, micro‐costing approach. In addition, we conducted a survey that was completed by key staff to understand time allocation.Principal FindingsProgram costs were approximately $1.33 million, and the annual per patient cost was $1455. Thirty percent of the program costs was for social needs activities: 18% for 30‐day supply of medications and addressing socioeconomic barriers to medication adherence, 18% for mobile health services (outpatient home visits), 53% for navigating services through a financial counselor and community health worker, and 12% for transportation to visits and addressing transportation barriers. Most of the program costs were for personnel: 92% of the health care program fixed, 95% of the health care program variable, and 78% of social needs activities.DiscussionHistorically, social and health care services are funded by different systems and have not been integrated. We estimate the cost of implementing social needs activities into a health care program. This work can inform implementation for hospitals attempting to address social determinants of health and social needs in their patient population.     

Barriers for individuals with spinal cord injury returning to the community: a preliminary classification

BackgroundWith decreased length of stay for inpatient rehabilitation, individuals with newly acquired spinal cord injury (SCI) might be discharged back into the community without the level of knowledge and functional skills necessary to live successfully post injury. This research studied the course of recovery and outcomes after the delivery of a coordinated inpatient rehabilitation system of care for individuals with SCI.ObjectiveIndividuals with newly acquired SCI face numerous barriers during reintegration into the community. The purpose of this article is to identify and develop a preliminary classification of barriers to community reintegration that persons with SCI experience during the post-acute period.MethodsThis 1-year study is the qualitative arm of a randomized controlled pilot study. Twenty-six people with SCI participated (mean age 40.6 years, 81% male and 54% tetraplegic). Self-reported data were collected during the first year post discharge from inpatient rehabilitation.ResultsThe three most common categories of self-reported barriers were mobility and equipment issues (23%), lack of environmental, and home assistance (20%), and insurance issues (18%). The two most common specific barriers were lack of insurance coverage (6.5% of all reported barriers) and residing in a nursing home (5.4%).ConclusionOur findings provide a preliminary classification of the barriers newly injured persons with SCI encounter during the post-acute period.     

Envisioning Women-Centered HIV Care: Perspectives from Women Living with HIV in Canada

BackgroundWomen comprise nearly one-quarter of people living with human immunodeficiency virus (HIV) in Canada. Compared with men, women living with HIV experience inequities in HIV care and health outcomes, prompting a need for gendered and tailored approaches to HIV care.MethodPeer and academic researchers from the Canadian HIV Women's Sexual and Reproductive Health Cohort Study conducted focus groups to understand women's experience of seeking care, with the purpose of identifying key characteristics that define a women-centered approach to HIV care. Eleven focus groups were conducted with 77 women living with HIV across Quebec, Ontario, and British Columbia, Canada.ResultsWomen envisioned three central characteristics of women-centered HIV care, including i) coordinated and integrated services that address both HIV and women's health care priorities, and protect against exclusion from care due to HIV-related stigma, ii) care that recognizes and responds to structural barriers that limit women's access to care, such as violence, poverty, motherhood, HIV-related stigma, and challenges to safe disclosure, and iii) care that fosters peer support and peer leadership in its design and delivery to honor the diversity of women's experiences, overcome women's isolation, and prioritize women's ownership over the decisions that affect their lives.ConclusionDespite advances in HIV treatment and care, the current care landscape is inadequate to meet women's comprehensive care needs. A women-centered approach to HIV care, as envisioned by women living with HIV, is central to guiding policy and practice to improve care and outcomes for women living with HIV in Canada.     

Barriers to employment of Australian cancer survivors living with geographic or socio‐economic disadvantage: A qualitative study

BackgroundOpportunities for cancer survivors’ employment can both reflect and perpetuate health inequities, as employment is an important social determinant of health. Socio‐economic and geographic disadvantage is associated with greater difficulty finding work, but little is known about work needs of Australian cancer survivors living with disadvantage.ObjectiveThis study examined survivor and health‐care professional (HCP) perspectives on barriers experienced by Australian cancer survivors experiencing disadvantage when attempting to remain at or return to work.MethodFocus groups and individual interviews were held with cancer survivors (N = 15) and oncology and primary HCPs (N = 41), focusing on communities at risk of disadvantage. Participants were asked about employment barriers and facilitators in general and in the context of disadvantage. Themes were identified using framework analysis.ResultsGeographic and socio‐economic disadvantage resulted in specific individual‐ and system‐level barriers. These related to distance from treatment and support services and limited availability and suitability of work for survivors living with geographic disadvantage, and limited availability, security, and flexibility of work and previous unemployment for survivors living with socio‐economic disadvantage. Identified needs included system‐level changes such as public and workplace‐level education, legislative and policy changes, and better access to resources.ConclusionsCancer survivors living with disadvantage experience limited access to flexible employment opportunities and resources, further perpetuating their disadvantage. Promotion of health equity for cancer survivors living with disadvantage requires systemic changes to support attempts to remain at/return to work.Patient or public contributionThis study included cancer survivors and HCPs as investigators, authors and participants.     

Modeling caregivers' perceptions of children's need for formal care: physical function, intellectual disability, and behavior

BackgroundLike most caregivers, informal caregivers for children (typically parents) with special needs supply the majority of the care provided. Formal care is sometimes needed to supplement informal caregivers' efforts. For those interested in children with special needs, there is a paucity of research on those factors affecting the amount of formal care that caregivers' request.Objectives/HypothesesThis research investigates factors affecting the amount of Medicaid personal care services (PCS) requested by primary caregivers for children with special needs. The research focuses especially on the roles played by the child's functional status, intellectual abilities, and behaviors in determining the level of assistance requested by caregivers.MethodsThe data used in this research are cross-sectional information on 262 children with special needs who were Medicaid recipients in a single southwestern state. These data were collected in 2007 by master's trained social workers or registered nurses using a standardized assessment instrument.ResultsThe results indicate that a child's ability to independently perform activities of daily living (ADLs) tasks plays the major role in determining caregivers' perceptions of the need for PCS. The severity of a child's intellectual disability, like some other factors investigated, has an effect on caregivers' perceptions, but it is an indirect effect that operates through the level of the child's ADL impairment. A child's age and behaviors have direct effects on caregivers' perceptions of need, as does the presence of barriers to the caregiver providing care.DiscussionMuch of the research on children with special needs has emphasized the importance of the child's medical or behavioral diagnoses. Little attention has been given to modeling caregivers' perceptions of children's needs. This analysis of caregivers' requests for formal PCS brings to the forefront the role of ADL or functional status in this process. Many factors that one would expect to directly affect caregivers' perceptions of need, instead, have indirect effects filtered through their impact on the child's functional status.     

Providers’ Perspectives on High-Quality Dementia Care in Long-Term Care

ObjectivesTo understand dementia care providers’ perspectives on high-quality care for persons living with dementia (PLWD) in long-term care (LTC).DesignA qualitative study using a directed content analysis approach.Setting and ParticipantsNine national LTC dementia care providers.MethodsWe facilitated 5 listening sessions centered around dementia care philosophies, models, and practices. Two researchers first mapped qualitative data to the Holistic Approach to Transformational Change (HATCh) model for dementia care using a directed content analysis approach. They then identified themes and subthemes emerging from the data using a conventional analysis approach. They coded data iteratively and solicited input from 3 additional researchers to reach consensus where needed. Member checks were performed to ensure the trustworthiness of the data during 2 follow-up listening sessions.ResultsThe 9 participants described the importance of understanding the experiences of PLWDs in order to provide high-quality dementia care and to deliver such care with the residents and their preferences as the focus. They emphasized experiential education as essential for families and all staff, regardless of role. They noted the need to balance safety with resident choice, as well as the corresponding need for facility leadership and regulators to support such choices. The listening sessions revealed areas to foster person-centered care for PLWD, but also highlighted barriers to implementing this philosophy in LTC settings.Conclusions and ImplicationsEmergent themes included care practices that center on resident preferences and are supported by staff with the experiential education and communication skills necessary to relate to and support PLWD. These findings provide contextual information for researchers seeking to identify and test interventions that reflect LTC providers’ priorities for PLWD and emphasize the need to align research priorities with provider priorities.     

Personal Experiences of Pregnancy and Fertility in Individuals with Spinal Cord Injury

Individuals with spinal cord injuries (SCIs) often face a number of barriers in family planning and pregnancy. These barriers can be structural (i.e. inaccessible health care provider offices and providers unfamiliar with fertility, pregnancy, and SCI) or social (i.e. friends, family, and even providers suggesting that individuals with SCI should not have children), and can affect both men and women. Additionally, much of the information about SCI and pregnancy is from a medical perspective and the psychosocial aspects of pregnancy for individuals with SCI have not been considered. 253 men and women with SCI were asked about the information they received about SCI and pregnancy, where they received this information, and how their SCI affected their family planning. The responses shared in this study can be used to inform individuals who work with people with SCI to better assist their clients or patients who have sustained SCI and are considering pregnancy.     

Needs in rare diseases during paediatric age

All rare diseases present a common set of challenges to the sufferers and their families: diagnosis, dealing with symptoms, health information, obtaining helpful medical care, availability of medications, disability and emotional impact. Children with rare disorders are an important population from health care services, and social services perspectives, and families are providing long-term care for these chronically ill children. The impact of rare disorders in children is far-reaching, extending beyond the child to all those with whom he/she has contact. Multiple facets of life are affected including social an family relationships, economical well-being and activities of daily living. The assessment of needs for rare disorders treatment is a critical step in providing high quality care and achieving patients' and families' satisfaction. Findings from different studies show that people with rare diseases have medical and social needs. Social needs are becoming more relevant in developed countries where health care services, even with limitations, have greater availability than social services. Furthermore, it seems that health care and social services for persons with rare diseases need to be improved to address the patients' needs and to provide better support to families. Validated tools with good psychometric properties are still needed to assess quality of care on the basis of patients and family needs.     

Health care professionals’ perspectives on physical activity within the Ugandan mental health care system

BackgroundMental health care systems in Africa are faced with a high burden of mental disorders. There is need to explore evidence-based, scalable interventions to compliment the “traditional” health care system. Physical activity (PA) can augment the effectiveness of existing programs. However, little is known about the perspectives of health care professionals on PA. Understanding this is key to implementation.MethodsThis was a qualitative exploratory study based on 13 key informant interviews among experienced health care professionals working at Butabika National Referral and Teaching Hospital, Uganda. Data was analyzed through content thematic analysis.ResultsParticipants reported PA benefits were: improved individual competences and engagement, social reintegration and reduced family and community burden. Self-stigma, lack of community support, lack of infrastructure and equipment, lack of monitoring capacity, human resource challenges and a focus solely on pharmacotherapy were among the most reported barriers to application of PA in management of mental health problems.ConclusionDespite the high level of understanding of PA among health care professionals, PA promotion largely depends on implementation of strategies to deal with community and health systems barriers. Although patients need to be empowered to deal with their individual barriers, greater support and action is needed by policy makers. Public health programs should support PA through community engagement and social re-integration programs. The government should promote a holistic mental health care perspective and provide adequate infrastructural and human resources to support PA in the existing primary and mental health care systems.     

Integrating community health workers into a community hearing health collaborative to understand the social determinants of health in children with hearing loss

BackgroundChildren with hearing loss (HL) require coordination of care to navigate medical and social services. Strong evidence supports the role of community health workers (CHWs) to identify and address social barriers.ObjectiveThe goal of this study was to evaluate the impact of integrating CHWs into the medical teams of children with HL and identify the social needs associated with their caregivers at a large urban hospital center.MethodsA retrospective chart review was conducted for 30 children with HL whose caregivers enrolled in a CHW program between August 1, 2017 and December 31, 2019. Baseline demographic data were collected, including social circumstances such as food and housing insecurity, status of social security supplemental income (SSI), and need for referral to early intervention (EI) or preschool/school services. Caregivers were assessed for confidence in self-management; baseline distress level was measured via a distress thermometer.ResultsOf the 30 charts reviewed, 93% demonstrated social needs including food insecurity (24%) and educational service needs (45%). Eighty-seven percent of caregivers reported a sense of control over the child's condition, yet 73% reported a stress level of four or greater on the distress thermometer scale. At 3 months follow-up, 70% of patients completed referrals; a significant number of patients had obtained hearing aids and cochlear implants compared to baseline (p = 0.017).ConclusionsCaregivers of children with HL face multiple social obstacles, including difficulties connecting to educational and financial resources. CHWs are instrumental in identifying social needs and connecting caregivers to services.     

Pediatrie HIV Adherence

Summary

Providers working with children living with HIV strive to achieve “good adherence,” often viewed only as consistent pill taking by the infected child. This goal, while important, needs to be expanded with a thorough examination of the many biopsychosocial factors impacting the HIV affected family. The complexity of the issues affecting adherence to a pediatrie HIV medical regimen can overwhelm both the practitioner and the patient. By utilizing a developmental framework and emphasizing the critical importance of the relationship between provider, patient and family, the authors (both of whom are social workers who have worked over a period of many years with children and families living with terminal and serious chronic illnesses) describe a developmental approach that includes comprehensive assessment to address the multiple challenges faced by individuals and families they have worked with.