Community Care Model Research Articles

Community health services in European literature: A systematic review of their features, outcomes, and nursing contribution to care.

To meet the population's needs, community care should be customized and continuous, adequately equipped, and monitored. Considering their fragmented and heterogeneous nature, a summary of community healthcare services described in European literature is needed. The aim of this study was to summarize their organizational models, outcomes, nursing contribution to care, and nursing-related determinants of outcomes. A systematic review was performed by searching PubMed, CINAHL, Scopus, and Embase in October 2022 and October 2023 (for updated results). Quantitative studies investigating the effects of community care, including nursing contribution, on patient outcomes were included and summarized. Reporting followed the PRISMA checklist. The review protocol was registered on PROSPERO (CRD42022383856). Twenty-three studies describing six types of community care services were included, which are heterogeneous in terms of target population, country, interventions, organizational characteristics, and investigated outcomes. Heterogeneous services' effects were observed for access to emergency services, satisfaction, and compliance with treatment. Services revealed a potential to reduce rehospitalizations of people with long-term conditions, frail or older persons, children, and heart failure patients. Models are mainly multidisciplinary and, although staffing and workload may also have an impact on provided care, this was not enough investigated. Community health services described in European literature in the last decade are in line with population needs and suggest different suitable models and settings according to different care needs. Community care should be strengthened in health systems, although the influence of staffing, workload, and work environment on nursing care should be investigated by developing new management models. Community care models are heterogeneous across Europe, and the optimum organizational structure is not clear yet. Future policies should consider the impact of community care on both health and economic outcomes and enhance nursing contributions to care.

EFECTIVIDAD DEL MODELO DE SALUD FAMILIAR EN LA ATENCIÓN PRIMARIA DE SALUD CHILENA

Effectiveness evaluation of the “Comprehensive Family and Community Care Model” imple­mented at Primary Care Heatlh Care level in Chile has not been a priority for public policy. However, studies that address criteria related to this area reveal important improvements in user satisfaction, reduction in avoidable hospitalizations and health spenditures, as well.

EVALUATING FEASIBILITY OF A SECONDARY STROKE PREVENTION PROGRAM

INTRODUCTION & AIMS While 80% of strokes are preventable, stroke remains the second leading cause of disability and death worldwide. Recurrent stroke has an accumulative effect that increases the level of disability and demands on healthcare. Healthy lifestyles that include regular exercise can reduce stroke risk, but stroke survivors lack guidance to modify their lifestyle after hospital discharge. Models of community care may support secondary stroke prevention with guidelines recommending physical activity and cardiovascular exercise, and referrals to support behaviour change to address modifiable risk factors. Our aim was to evaluate the implementation of a secondary stroke prevention program provided within a community rehabilitation service to see if it was feasible to deliver and acceptable for participants. METHOD We evaluated the implementation of a secondary stroke prevention program involving supervised exercise, multidisciplinary education and health coaching to address modifiable risk factors. The group-based program involved face-to-face and telehealth sessions. The primary outcomes were feasibility, examined via service information (referrals, uptake, participant demographics, costs), and participant acceptability (satisfaction and attendance). Secondary outcomes examined self-reported change in lifestyle factors, and pre-post scores on standardised clinical tests, [e.g., waist-circumference, 6-Minute-Walk (6MWT)]. RESULTS We ran seven programs in 12-months, and 37 people participated. Attendance for education sessions was 79%, and 30/37 participants completed the full program. No adverse events occurred. Participant satisfaction was high for ‘relevance’ (100%), ‘felt safe to exercise’ (96%) and ‘intend to continue’ (96%). Most participants (88%) changed (on average) 2.5 lifestyle factors (diet, exercise, smoking, alcohol). Changes in clinical outcomes seemed promising, with some being statistically significant, e.g. 6MWT (MD 59m, 95%CI 38m to 80159m, p<0.001), and waist-circumference (MD –2.1cm, 95%CI -3.9cm to -1.4cm, p<0.001). CONCLUSION The program was feasible to deliver, acceptable to participants and seemed beneficial for health. Access to similar programs may assist in secondary stroke prevention.

Implementing a Senior Community Care Model: An Italian Top‐Down Cohousing Project and Nursing Home

Not ageing in place is an increasing reality for many older Europeans. For several decades societies have applied different care models in developing initiatives to provide safe and age-friendly spaces. This article presents the community care model implemented by the Italian service provider ISRAA in Treviso (Italy) in one of its nursing homes and senior cohousing projects. The aim of our study was to analyse this senior community care model and find out how residents have responded to it. Participants were both the older adult residents in the two ISRAA facilities and professionals responsible for their social attention. A qualitative methodology was used: questionnaire, interviews, and focus groups with professionals and care facility residents. Results reveal the care philosophy implemented, residents’ experiences, the main barriers to creating a community, and how this model could be improved by following community development principles, with the older people’s help, participation, and engagement. The conclusions highlight the importance of applying principles of self-determination and social inclusion in a preventive care model for the senior community. In addition, a key factor in promoting community development is for professionals to act as community development practitioners and to allow older adults to be part of the change.

Patient-reported outcome and experience measures (POEM) of a community-based glaucoma clinic in Cambridge, UK: an observational study

ObjectivesGlaucoma care demand in UK hospitals has exploded in recent years. This has resulted in a push to community (shared, virtual, etc) care models to reduce the burden on hospital...

Designing meaningful surveys: Engaging experts-by-lived experience in the development of a patient-reported experience measure (PREM) of integrated home and community care.

Background: People want to live well in their homes and communities for as long as possible. To support this, some home care services in Ontario, Canada are restructuring to integrate medical and personal care, with community-based social care and services (e.g., friendly visiting, meals, and transportation). Measures of client experience, referred to as ‘patient-reported experience measures’ (PREMs) are important for guiding health system improvements in a way that is meaningful to clients. A current challenge is that existing PREMS are insufficient for measuring client experience of new models of home and community care.
 Aims: This study engaged clients, family/friend caregivers, and health and social care providers in a participatory process to develop relevant items for a PREM for integrated home and community care. This engagement process aimed to provide opportunities for client feedback to support integrated care and ensure the new PREM will collect data that can inform health system improvements in ways that are most meaningful to clients and caregivers.
 Methods: Guided by Streiner et al.’s (2015) approach, we engaged experts-by-lived experience in content and face validity testing of an item pool matrix to determine relevance and coverage of domains and items. The matrix consisting of 3 domains, 14 categories, and 72 items was based on a literature review of home and community PREMs (32 PREMs with 550+ items) and interviews with healthcare leader experts (n=6). To conduct content and face validity testing we held three focus groups with home care recipients and family/friend caregivers (n=17) as well as individual interviews with health and social care providers working in home care (n=15). We analyzed transcripts line-by-line to generate themes related to face and content validity of each item. 
 Results: Participants agreed that client experience of innovative home and community care is well captured by three domains: equity, continuity, and life care. They also agreed the corresponding 72 proposed items had face validity. Suggestions to improve content validity included that items be adapted to recognize the role of caregivers; the role of primary providers and/or coordinators in delivering well organized care; and shifting from a focus on self-management to having needed supports to stay in the home, and collaboratively developing care plans. Participants excluded several items due to being vague or not meaningful, such as asking, “my providers understood my needs”. Based on feedback, 22 items were removed from the matrix.
 Learnings: Engaging experts-by-lived experience in development of PREMs helps ensure the data generated from PREMs will be meaningful and useful for guiding health system improvements that matter to clients. Relying on existing literature and traditional expert opinion alone did not guarantee relevance or coverage of items. 
 Next steps: The feedback from participants will be used to further refine and scale the PREM items. Clients of home care and family/friend caregivers will then be re-engaged in cognitive testing to identify issues related to answering the questions on the scale. Once complete, the PREM will undergo psychometric testing.

Adaptability of Integrated Community Care models in Moldova to overcome compounded crisis, including supporting refugees. 

Introduction: The Healthy Life Project in Moldova works and collaborates with local authorities across all sectors, including civil society organisations, community members and NCD patients to promote integrated, person-centered care. The aim is to ensure vulnerable people, including refugees, have access to health and social care. Overall, Moldova has received nearly 698,000 Ukrainian refugees, of which 96,646 currently remain in the country.
 Methods: Through intersectoral capacity building community teams developed local integrated care work plans, including joint assessments of people with NCDs and coordinated individual care across different sectors and community resources. The plans also involved a focus on responding to the needs of Ukrainian refugees. Within this continued implementation support, the project included questions of access to health and social care along the migratory cycle to maintain management of chronic conditions. Around 97% of refugees are residing in the host community, most of them require particular support in accessing their rights in practice, being women (59%), children (48%) and the elderly (21%).
 Results: Request for health care services from refugees (28,30%) is one of the forms of assistance expected in addition to cash handouts (76,84%) and in-kind support (35,79%). Therefore, in addition to building capacities for monitoring and management of NCDs, and the application of integrated care, the project considered specific actions for refugees. Training on managing NCDs within the refugee crisis was provided to Primary Health Care (PHC), hospital, Public Health, and emergency care management teams in 20 districts. To support and ensure mobility of PHC practitioners in responding to increased community needs due to hosted refugees, 835 medical kits were purchased and distributed, alongside protective equipment and disinfectants for both the health and social workers. A guide for community social workers on supporting refugees was developed in partnership with the National Social Assistance Agency and has since been embedded in the curricula of the social assistance faculty within the State Pedagogical University. 
 During 2022, 20 integrated community care centers have reached 8,464 persons with NCDs, with 77% having their wellbeing jointly assessed by a community nurse and social worker. As a result, most of them were included in preventive measures and supported to manage NCDs (7851 persons). The most vulnerable were identified and assisted, including 15% of NCD patients (675 persons) and supported to gain access to social benefits, while people with complex needs (663 persons) received access to home health and social care. Considerable progress has been made to promote integrated working locally, between health and social care. As everywhere, collaboration is reliant on personal motivation and local relationship building, and some teams take longer than others.
 Conclusions: Such community approaches are playing an important role in coordination of efforts to support the most vulnerable, as Moldova continues to face a refugee crisis. This continuous support to build capacity and ensure implementation of common approaches, facilitated by a jointly held normative framework supports a more integrated approach to service provision at community level, coordinated by local authorities thus making more efficient use of scarce resources.

Local Implementation of the Symbiotic Community Model to Achieve Aging in Place

<p>進入高齡社會的臺灣，偏鄉與原住民族應如何在諸多不利因素影響下，回應在地社區高齡者的生活照顧和醫養需求，成為落實在地老化高齡社會保障政策的重要一環。本文透過余尚儒以臺東都蘭診所推動的共生社區與在宅醫療模式，以及林依瑩在臺中和平區達觀部落伯拉罕長照機構的共生型照顧服務模式與地域營造方案，來檢視高齡社會下，透過在地組織連結資源、以特色服務解決高齡醫養困境的可能性；同時也檢視目前長照2.0在原鄉的執行困境及可能的解決方向。</p> <p> </p><p>In response to Taiwan’s aged society, rural and indigenous communities experience various challenges and unfavorable conditions while attempting to meet the caregiving and healthcare needs of older residents. Attending to such needs has become a crucial constituent of policy implementation aimed at ensuring social security in an aged society to achieve aging in place. This study explored two models to examine the feasibility of addressing the aforesaid problem by integrating local organizational resources and providing specialized services. The first model was the symbiotic community and home-based care model promoted at the Home Clinic Dulan in Taitung. The second model was the symbiotic care service model and place-making program promoted at the Plahan Long-term Care Institution in L’olu Tribe, which is located in Heping District, Taichung. Additionally, this study delved into existing challenges concerning the local implementation of Long-Term Care Plan 2.0 in indigenous communities, proposing possible solutions to these challenges.</p> <p> </p>

7 Designing and testing an integrated community care model with a remote home monitoring-alert device: a pilot study in Japan

Abstract Background An integrated model of health and social care in the community has been considered to be the gold standard, although many obstacles and challenges still exist. Living at one’s private home for as long as one wishes requires highly personalised arrangements, and therefore is costly, but assistive technologies can potentially facilitate this. In order to test the concept, a remote monitoring and care delivery system was developed. The usability and efficacy of the model were examined. Methods Sensor devices (biometric, temperature sensor and infrared camera sensor) were set up in the homes of five older people (aged 70 years and over), and the information was sent online to each older person, plus his/her family and caregivers. Using these devices, fifteen care professionals delivered home care and remotely supported the home life of the older adults between December 2022 and January 2023. A pre-post study design was adopted, collecting the System Usability Score (SUS), the International Classification of Functioning, Disability and Health (ICF) and the InterRAI assessments. The participating older adults and family members all consented to the research, which involved being observed or watched (all images are silhouettes only) when the system was in operation. Results Remote monitoring with alerts and two-way communication functions was highly valued by caregivers, as it provided an alternative model of care delivery, particularly for those living alone. While the device usability was not highly rated (D), several improvements in ICF and InterRAI scores were recorded (e.g. interpersonal communication, self-care, depressive tendencies). Conclusion While more research is necessary to increase the sample size and the duration of the data collection period, there is great potential for this model, embedding the use of assistive technologies into home care delivery. The study was funded in part by the Japan Agency for Medical Research and Development (22he2002023j0002).

The Development of ACCESS—A Community Care Model to Enhance Supportive and Palliative Support to Women of Color with Metastatic Breast Cancer (Sci256)

The Development of ACCESS—A Community Care Model to Enhance Supportive and Palliative Support to Women of Color with Metastatic Breast Cancer (Sci256)

“Initially, medicines will be given, and then we need to study the case”: Medicalized perspectives about chronicity and mental health care in Kerala

In response to the global call to upscale mental health services in low-­income countries, mental health non-governmental organisations (MHNGOs) have sprung up in Kerala to address mental health needs by partnering with pre-existing locally grown, bottom-up, community-led pain and palliative clinics (PPCs) to increase access to mental health care through task-shifting. The MHNGOs mandate filtering only patients with ‘severe mental disorders’ from low socioeconomic backgrounds for their free services. This eligibility criterion mandated by the MHNGO is ruffling feathers within the palliative clinics that oppose such ­classifications. They believe that suffering cuts across all divisions and should not be discriminated against based on economic background and severity of illnesses. When chronicity and suffering are held universal by the MHNGO and palliative care, respectively, it brings to the fore the enactment of two perspectives of care. Drawing on observations of clinical interactions between patients, MHNGO staff and mental health professionals and interviews with community volunteers of palliative care clinics in Kerala, this paper demonstrates how chronicity narrative promoted by MHNGOs based on biopsychiatric model gains hegemony, whereas the community care model loses traction progressively. The state, caught between these two narratives, frontstages development by submitting its health machinery to the MHNGOs flouting basic medical safety laws in its services to marginalised people like the tribal population. This paper argues that the rising dominance of chronicity narrative in community mental health clinics as well as in popular media discourses evolves out of power relations between the MHNGOs and the palliative clinics.

Przemoc seksualna wobec osób z niepełnosprawnością intelektualną. Przegląd badań

Sexual violence against people with intellectual disabilities is a serious problem, because despite the widespread change in attitudes to disability, there is no visible reduction in the phenomenon, but the forms of violence and the place where crimes are committed are changing. During the functioning of the social integration and community care model, paradoxically, the cause of undesirable events is the increasing isolation and dependence of charges on caregivers and aid providers. The victims of sexual violence are most often women and young girls with intellectual disabilities, but research shows an increase in violence also against men. The paper discusses the problem of sexual violence in the context of social theories and models interpreting intellectual disability.

A289 EXPLORING THE LIVED EXPERIENCES OF ADULT USING HOME ENTERAL NUTRITION AND THEIR CAREGIVERS: A QUALITATIVE SYSTEMATIC REVIEW

Abstract Background Home enteral nutrition allows individuals to receive food and water through a tube at home when they are unable to meet their needs by mouth. To date, systematic literature reviews to date have focused on specific insertion methods, coordinated community care models, and prophylactic vs. reactive use. Few qualitative systematic reviews exist and those that do have only explored the lived experiences of sub-populations of adults using home enteral nutrition, such as those with head and neck cancers. Given healthcare services often serve adult home enteral nutrition populations with various underlying conditions, a synthesis describing the lived experiences of all adult using home enteral nutrition and caregivers is needed. Purpose To conduct a meta-aggregation systematic review to evaluate lived experiences of home enteral nutrition in adult users and their caregivers. Method A systematic search of Medline, PsychINFO, EmBase and CINAHL was conducted September 2021. Only studies with a full-text and published in English were included. Study quality was assessed using the Johanna Briggs Institute meta-aggregation methodology. Details of the study design, participants, and experiences were recorded, and themes across all studies collatedCollated themes were reviewed with a team of healthcare providers, home enteral nutrition users and a caregiver to ensure trustworthiness. Result(s) A total of 38 studies representing 702 participants were included. Using the meta-aggregative approach, three different synthesized findings were identified: (1) positive experiences, (2) negative experiences, and (3) facilitators and coping mechanisms. While, overall, the findings reported more negative experiences than positive experiences, users and caregivers who had developed coping mechanisms or had access to supportive services tended to share more positive experiences with home enteral nutrition. In contrast, those with few to no supports or coping mechanisms reported greater dissatisfaction and negative experiences. Image Conclusion(s) Home enteral nutrition impacts the lived experience of users and their caregivers. While more negative than positive experiences were reported by adults and their caregivers using home enteral nutrition, overall, they still view home enteral nutrition as a positive intervention if they are adequate supported or developed adequate coping mechanisms. It is imperative that healthcare providers working with adults using home enteral nutrition explore and understand their patients’ and caregivers’ needs, in order to ensure community programs are designed to provide the necessary supports to maximize users experiences. Please acknowledge all funding agencies by checking the applicable boxes below None Disclosure of Interest None Declared PANCREATIC DISORDERS

A 50-year-old refugee woman with a lithopedion and a lifetime of trauma: a case report

BackgroundLithopedion is a term that refers to a fetus that has calcified or changed to bone. The calcification may involve the fetus, membranes, placenta, or any combination of these structures. It is an extremely rare complication of pregnancy and can remain asymptomatic or present with gastrointestinal and/or genitourinary symptoms.Case presentationA 50-year-old Congolese refugee with a nine-year history of retained fetus after a fetal demise was resettled to the United States (U.S.). She had chronic symptoms of abdominal pain and discomfort, dyspepsia, and gurgling sensation after eating. She experienced stigmatization from healthcare professionals in Tanzania at the time of the fetal demise and subsequently avoided healthcare interaction whenever possible. Upon arrival to the U.S., evaluation of her abdominal mass included abdominopelvic imaging which confirmed the diagnosis of lithopedion. She was referred to gynecologic oncology for surgical consultation given intermittent bowel obstruction from underlying abdominal mass. However, she declined intervention due to fear of surgery and elected for symptom monitoring. Unfortunately, she passed away due to severe malnutrition in the context of recurrent bowel obstruction due to the lithopedion and continued fear of seeking medical care.ConclusionThis case demonstrated a rare medical phenomenon and the impact of medical distrust, poor health awareness, and limited access to healthcare among populations most likely to be affected by a lithopedion. This case highlighted the need for a community care model to bridge the gap between the healthcare team and newly resettled refugees.

Pension level, subjective wellbeing, and preference of care model among elderly people: An empirical study based on structural equation modeling.

The problem of population aging is becoming increasingly serious, and the elderly care model has become the social focus in China. It is urgent to improve the traditional home based elderly care model and increase the recognition of the residents for the socialized elderly care model. Based on the data of the 2018 China Longitudinal Aging Social Survey (CLASS), this paper uses structural equation model (SEM) to empirically test the impact of the elderly group's social pension level and subjective well-being on their choice of various care models. The results show that the improvement of elderly's pension level can significantly inhibit their choice of home-based care model, and promote their choice of community and institution care model. Subjective well-being can play a mediating role in the home-based and community care model choices, but the indirect approach mediated by subjective well-being only plays a supplementary role. In addition, the heterogeneity analysis shows that there are discrepancies in the impact and path for the elderly with different gender, age, household registration, marital status, health status, education level, number of children, and gender of children. The results of this study will help the improvement and development of social pension policy, optimizing the structure of residents' elderly care model and the process of "active aging".

Evaluation of a technology-enhanced, integrated community health and wellness program for seniors (HWePS): protocol of a non-randomized comparison trial

BackgroundHealthy aging for all in the community is a shared public health agenda for countries with aging populations, but there is a lack of empirical evidence on community-wide preventive models that promote the health of older people residing in socially-disadvantaged communities. The Health and Wellness Program for Seniors (HWePS) is a technology-enhanced, multi-level, integrated health equity intervention model. This study evaluates the effect of the HWePS on the health and well-being of older adults residing in urban, low-income communities. Methods/designHWePS is a prospective, non-randomized comparison trial conducted in an intervention and a control neighborhood (dong) in Seoul, South Korea, over 12 months. Older people who reside in the small areas and meet the inclusion/exclusion criteria are eligible to participate. The multi-level, multi-faceted HWePS intervention is a preventive community care model for older residents guided by the expanded chronic care model, the comprehensive health literacy intervention model, and the Systems for Person-centered Elder Care model along with health equity frameworks. HWePS consists of four components: a health literacy intervention based on individual and community needs assessments, personalized (self-)care management featuring nurse coaching and peer support, a healthy-living and healthy-aging community initiative, and information and communication technology (ICT) systems. The primary outcomes are self-reported health and health-related quality of life. Outcome assessors and data analysts are blinded to group assignment. Process evaluation will be also conducted.DiscussionAs a multi-level health equity project, HWePS has adopted a novel study design that simultaneously targets individual- and community-level factors known to contribute to health inequality in later life in the community. The study will provide insights into the effectiveness and implementation process of an integrated, multi-level, preventive community care model, which in turn can help improve the health outcomes of older residents and reduce disparities in underserved urban communities.Trial registrationISRCTN29103760. Registered 2 September 2021, https://www.isrctn.com/ISRCTN29103760

Continuidade do cuidado e ações no território durante a COVID-19 em municípios de São Paulo, Brasil: barreiras e facilitadores

Abstract The discontinuity of care and actions in the territory in primary health care during pandemic periods can escalate acute and chronic complications and mortality. In this sense, this article aims to present the barriers and facilitators for care continuity and actions in the territory during the COVID-19 pandemic in São Paulo municipalities. This qualitative analysis was conducted through 37 interviews with health managers and professionals from six municipalities. Two facilitators were identified: the availability of a specific service for attending COVID-19-related respiratory demands and the integration of the health team professionals before the pandemic. Two barriers were identified: a fragile primary healthcare structure before the pandemic and the lack of alignment of health professionals’ actions with the community and territorial care model. We concluded that municipalities with a structured PHC system before the pandemic faced fewer hardships in preserving care continuity and actions in the territory.

Veterans Health Administration Models of Community-Based Long-Term Care: State of the Science.

The complex care needs of older adults arising at the intersection of age-related illnesses, military service, and social barriers have presented challenges to the US Department of Veterans Affairs (VA) for decades. In response, the VA has invested in centers that integrate research, education, and clinical innovation, using approaches aligned with a learning health care system, to create, evaluate, and implement new care models. This article presents an integrative review of 6 community care models developed within the VA to manage multimorbidity, complex social needs, and avoid institutional care, examining how these models address complex care needs among older adults. The models reviewed include Home Based Primary Care, Medical Foster Home, the VA Caregiver Support Program, the Resources Enhancing Alzheimer's Caregiver Health (REACH)-VA program, the Caregivers of Older Adults Cared for at Home (COACH) program, and Veteran Directed Care. Core components and evaluation outcomes for each model are summarized, along with implications for more widespread implementation and research. Each model promotes coordinated care, integrates behavioral health, and leverages interprofessional expertise. All models are cost-neutral or incur only modest cost increases to improve outcomes. Broader implementation will require interprofessional workforce development, payment model realignment, and infrastructure to evaluate outcomes in new settings. The VA provides a blueprint for infrastructure that could be adapted to other domestic and international settings. Care models successfully implemented within the VA's single-payer system hold promise to address persistent dilemmas in long-term care, such as management of multimorbidity and social drivers of health, integration and support of family caregivers, and mental health integration. These models also demonstrate the value of incorporating care approaches that have been developed or tested outside the United States and argue for greater cross-fertilization of ideas from different health systems.

DRUG ERADICATION AMONG THE YOUTH GENERATION

This study observes social phenomena that occur in the people of Gampong Mon Geudong, Banda Sakti District, Lhokseumawe City, Aceh Province . This gampong was chosen because it is one of the gampongs known for its high drug circulation and drive in Lhokseumawe City, and finally a movement that is aware of the dangers of drugs has formed and formed the B-DAME organization which aims to overcome the problem of drug abuse in Gampong Mon Geudong. From the results of the study it was found that many young people were already trapped in the drug trap. The results of other studies found that the community care model incorporated in the B-Dame organization was effective in reducing drug and drug trafficking in Gampong Mon Geudong. The suggestion from this research is that the government completes the model that has been developed by the Mon Geudong community into a model implemented by various other gampongs so that the drug problem will slowly but surely be overcome later.

"Here's What I Wish You Knew": A Qualitative Narrative Analysis of the Adolescent Sickle Cell Pain Experience

Background Bias, stigmatizing language, and social isolation are significant barriers to the optimal care of pain for adolescents and young adults (AYA) with sickle cell disease (SCD). Qualitative studies that include first-person narratives of SCD pain are underrepresented in outcomes research but provide valuable information for clinical education and community care models. Here, we present the interim analysis of an ongoing thematic research study that analyzes narrative experiences of AYA patients with SCD and their journeys- both in and out of the healthcare system- with chronic pain. Methods In this IRB-approved study, a single semi-structured interview is administered to patients ages 13-21 with sickle cell disease (Hemoglobin SS, SC, and SBeta0Thal genotypes) living in a mid-sized metropolitan center and receiving care at an academic teaching hospital. Patients are offered the opportunity to participate from inpatient units, ambulatory continuity clinics, and community advocacy groups. Interviews are conducted either in-person or remotely, recorded, transcribed, and independently checked for accuracy. The interview includes questions about coping with pain in medical and non-medical settings, interactions with the healthcare team, impacts of pain on social and community life, and opportunities to describe what patients wish family members, teachers, friends, and healthcare providers understood about living with SCD pain. Transcripts are analyzed for thematic coding by 2 independent coders using a deductive approach with latent textual analysis (Braun & Clarke, 2013). Codes are translated into themes by key-words-in-context and indigenous categorization methods (Ryan, 2011). Thematic coders are not members of the patients' clinical care teams, and patients do not provide interviews during acute pain crises. Results At the time of submission, 8 interviews were completed and analyzed. The median patient age was 17 years. Concordant coding revealed five primary themes: the relationship between acute and chronic pain, coping with rituals and cycles of care, the unpredictable nature of pain, navigating a biased healthcare system, and social isolation. The majority of patients detailed their experiences with intense, coexistent physical and emotional pain (6/8) that creates a pervasive sense of uncertainty and foreboding (4/8) in their lives. They described navigating a healthcare system that is difficult to understand, while experiencing doubts and dismissals of their pain from healthcare providers, particularly when making the transition to adult care (4/8). Lack of education and awareness about SCD in academic settings (5/8) and "missing out" on social milestones and norms (6/8) were cited as sources of isolation and emotional fatigue. Having a family member or community-based care advocate was viewed as a critical source of support within both the health system and community (4/8). Discussion and Future Directions This ongoing qualitative research study in adolescent and young adults with SCD provides narrative data about the lived experience of sickle cell pain from the patient perspective. Interim analysis suggests several locations in the care trajectory where reports of pain may be particularly vulnerable to bias: in healthcare settings for management of acute-onset pain crisis, in schools and other academic support settings where knowledge of SCD may be incomplete, and in the transition of care from pediatric to adult care models. Particularly during acute pain management and transition care experiences, patients describe the use of stigmatizing language- in conversation and in the electronic health record- that contribute to feelings of isolation, frustration, and emotional suffering. Results of this study are being used to inform community, pastoral, and school-based sickle cell education programs as well as medical education curricula aimed at reducing stigmatizing language. Results are also being used to develop standard criteria for sickle cell patient advocates, and to improve infrastructure for the integration of patient advocates into sickle cell care teams. Future research will measure the impact of patient participation in narrative research on clinical outcomes and attitudes toward engaging the healthcare system, both for routine care and potential SCD clinical research. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal