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3.
J Allied Health ; 53(2): e67-e76, 2024.
Article in English | MEDLINE | ID: mdl-38834345

ABSTRACT

Parkinson's disease (PD) is a complex condition, and individuals living in rural areas often face challenges accessing the specialized care they require. To better understand the specific healthcare needs of individuals with PD in Eastern North Carolina (ENC), the present study investigated three key areas: access to a multidisciplinary care team, access to PD-specific resources, and access to resources for establishing telemedicine services. Participants were recruited through email invitations to Parkinson's Foundation members and the distribution of postcards in the region, and 106 individuals with PD in ENC completed the online survey. Only 28.3% of respondents reported access to an interdisciplinary care team, with approximately 50% stating that their healthcare provider had not informed them of the availability of such a team. Nevertheless, the quality of care received was generally perceived as high, and 41.5% of participants were part of a PD support group. Approximately half of the respondents expressed a willingness to have telemedicine appointments with a movement disorder specialist. These findings offer valuable insights for healthcare providers and policymakers in rural areas to better understand the needs of people with PD. Several strategies, including community building and increased access to telemedicine, are recommended to address these needs.


Subject(s)
Health Services Accessibility , Parkinson Disease , Patient Care Team , Telemedicine , Humans , North Carolina , Telemedicine/organization & administration , Parkinson Disease/therapy , Female , Male , Middle Aged , Aged , Patient Care Team/organization & administration , Health Services Needs and Demand , Adult , Rural Population , Aged, 80 and over
4.
Sante Publique ; 36(2): 45-56, 2024.
Article in French | MEDLINE | ID: mdl-38834524

ABSTRACT

INTRODUCTION: Informal caregivers play a vital role in supporting people with severe mental illness. However, this role can leave informal caregivers with significant unmet needs. The aim of this qualitative study is to identify the extent to which the support offered to informal caregivers in adult psychiatry in French-speaking Switzerland meets their needs. METHOD: Individual semi-structured interviews and focus groups were conducted with informal caregivers, mental health professionals, and service providers. The data were analyzed by theme. RESULTS: The need for assistance and the need for information are two themes identified as prevalent among informal caregivers. Despite a consensus on the need for more support and information, informal caregivers, service providers, and health professionals do not assign the same importance to specific aspects of these themes. Suggestions for improving practices at the institutional, socio-political, and civil-society levels are put forward. Given the diversity of viewpoints on the priority needs of informal caregivers, there is a risk of offering support that only partially corresponds to the difficulties encountered by informal caregivers. CONCLUSIONS: Matching support and needs remains a major challenge. Agreeing on a consensual definition of support and information needs and proposing tailored approaches could make it possible to develop support services that meet the actual needs of informal caregivers.


Subject(s)
Caregivers , Mental Disorders , Humans , Female , Switzerland , Male , Mental Disorders/therapy , Middle Aged , Adult , Focus Groups , Health Services Needs and Demand , Social Support , Psychiatry , Needs Assessment , Qualitative Research , Aged
5.
Harm Reduct J ; 21(1): 108, 2024 Jun 01.
Article in English | MEDLINE | ID: mdl-38824597

ABSTRACT

BACKGROUND: Syringe services programs (SSPs) are critical healthcare access points for people with opioid use disorder (OUD) who face treatment utilization barriers. Co-locating care for common psychiatric comorbidities, like posttraumatic stress disorder (PTSD), at SSPs may reduce harms and enhance the health of individuals with OUD. To guide the development of onsite psychiatric care at SSPs, we collected quantitative survey data on the prevalence of PTSD, drug use patterns, treatment experiences associated with a probable PTSD diagnosis, and attitudes regarding onsite PTSD care in a convenience sample of registered SSP clients in New York City. METHODS: Study participants were administered the PTSD Checklist for the DSM-5 (PCL-5) and asked about sociodemographic characteristics, current drug use, OUD and PTSD treatment histories, and desire for future SSP services using a structured interview. Probable PTSD diagnosis was defined as a PCL-5 score ≥ 31. RESULTS: Of the 139 participants surveyed, 138 experienced at least one potentially traumatic event and were included in the present analysis. The sample was primarily male (n = 108, 78.3%), of Hispanic or Latinx ethnicity (n = 76, 55.1%), and middle-aged (M = 45.0 years, SD = 10.6). The mean PCL-5 score was 35.2 (SD = 21.0) and 79 participants (57.2%) had a probable PTSD diagnosis. We documented frequent SSP utilization, significant unmet PTSD treatment need, and high interest in onsite PTSD treatment. CONCLUSIONS: Study findings point to the ubiquity of PTSD in people with OUD who visit SSPs, large gaps in PTSD care, and the potential for harm reduction settings like SSPs to reach people underserved by the healthcare system who have co-occurring OUD and PTSD.


Subject(s)
Mental Health Services , Needle-Exchange Programs , Stress Disorders, Post-Traumatic , Humans , Stress Disorders, Post-Traumatic/epidemiology , Stress Disorders, Post-Traumatic/therapy , Male , Female , Adult , Needle-Exchange Programs/statistics & numerical data , New York City/epidemiology , Middle Aged , Mental Health Services/statistics & numerical data , Opioid-Related Disorders/epidemiology , Substance Abuse, Intravenous/epidemiology , Patient Preference , Health Services Needs and Demand/statistics & numerical data , Prevalence , Health Services Accessibility/statistics & numerical data , Patient Acceptance of Health Care/statistics & numerical data
6.
Glob Health Action ; 17(1): 2354009, 2024 Dec 31.
Article in English | MEDLINE | ID: mdl-38832537

ABSTRACT

BACKGROUND: Family interactions, which are always multi-faceted, are complicated further by family members with disabilities. In resource-poor settings, policies and programmes that address the needs of and challenges faced by families are often inaccessible or unavailable. Approximately 13% of the families in Tanzania have at least one member with a disability, yet family-centred research on caring for disabled children and adolescents is scarce in this context. OBJECTIVE: The aim is to explore the needs and challenges faced by families that care for children and adolescents with physical disabilities in the Kilimanjaro Region of north-eastern Tanzania. METHODS: This qualitative study had a constructivist grounded-theory design. In-depth interviews, using a semi-structured interview guide based on the social-capital framework, were conducted with 12 female participants aged between 24 and 80. A conceptual model of family needs, inspired by Maslow's hierarchy of needs, informed the analysis. RESULTS: Challenging needs were grouped into five categories, which were linked to Maslow's hierarchy of needs and related to the central concept of 'adaptive adjustment': (1) 'barely surviving'; (2) 'safety needs in jeopardy'; (3) 'sociocultural protection'; (4) 'self-esteem far beyond reach', and (5) 'dreaming of self-actualisation'. CONCLUSION: Families caring for children and adolescents with physical disabilities in north-eastern Tanzania have needs that extend beyond the available and accessible resources. Families can adjust and adapt by avoiding certain situations, accepting the reality of their circumstances and exploring alternative ways of coping. A sustainable support system, including social networks, is essential for meeting basic needs and ensuring safety.


Main findings: The challenges associated with caring for children and adolescents with disabilities are related to various environmental and social barriers, any of which can significantly impact the wellbeing of all family members.Added knowledge: In the context of a study conducted in north-eastern Tanzania, both nuclear and extended family networks were found to be valuable sources of support for these families.Global health impact for policy and action: Families must take considerable steps to strengthen their sociocultural support systems while, the support of the government and other stakeholders is crucial in addressing the challenges faced by families caring for children and adolescents with disabilities.


Subject(s)
Adaptation, Psychological , Disabled Children , Grounded Theory , Qualitative Research , Humans , Tanzania , Adolescent , Female , Child , Disabled Children/psychology , Adult , Middle Aged , Young Adult , Aged , Interviews as Topic , Family/psychology , Caregivers/psychology , Disabled Persons/psychology , Male , Health Services Needs and Demand
7.
PLoS One ; 19(6): e0303907, 2024.
Article in English | MEDLINE | ID: mdl-38833462

ABSTRACT

The number of refugees globally grew to 35.3 million in 2022, and many refugees are exposed to various health risks along their migration journey. As a result, they may arrive in host communities with numerous health issues, including communicable diseases and chronic and mental health conditions. Navigating the healthcare system in a host country proves to be a significant challenge for them, leading to delayed care. This qualitative study explored the convolute healthcare needs of refugees in the United States by soliciting insights from stakeholders involved in refugee resettlement and healthcare. In-depth interviews were conducted with fifteen stakeholders who work closely with refugees, including healthcare providers, cultural/clinical health navigators supporting refugees, staff from refugee resettlement agencies and governmental entities, and researchers studying refugee health. Following informed consent, interviews were audio-recorded, transcribed verbatim, and imported into MAXQDA 2022 (VERBI Software) for thematic analysis. The results revealed key themes, including the heterogeneity of refugee populations, limited awareness of preventive healthcare, high prevalence and suboptimal management of chronic conditions, complexity of the healthcare system, lack of follow-up, and language barriers. Further research is warranted concerning the long-term health of refugee populations in the United States. Additionally, more tailored programs involving peer educators are recommended to support refugee communities in navigating the complex healthcare system in the host country.


Subject(s)
Qualitative Research , Refugees , Refugees/psychology , Humans , United States , Female , Male , Health Services Needs and Demand , Health Services Accessibility , Delivery of Health Care , Adult , Stakeholder Participation , Health Personnel/psychology , Chronic Disease/epidemiology
8.
Indian J Public Health ; 68(1): 44-49, 2024 Jan 01.
Article in English | MEDLINE | ID: mdl-38847632

ABSTRACT

BACKGROUND: There is mixed evidence on the extent of association between the allocation of public revenue for healthcare and its indicators of need. OBJECTIVE: In this study, we examined the relationship between allocations through state health financing (SHF) and the Central Government with infant mortality. MATERIALS AND METHODS: District-wise infant mortality rate (IMR) was computed using National Family Health Survey-4 data. State-wise data for health budgets through SHF and National Health Mission (NHM, a Centrally Sponsored Scheme), were obtained for the year 2015-16. We used a multivariable analysis through generalized linear model method using identity-link function. RESULTS: We found per capita SHF (₹3169) to be more than 12 times that of public health spending per capita through NHM (₹261). IMR was lower in districts with higher SHF allocation, although statistically insignificant. The allocation through NHM was higher in districts with higher IMR, which is statistically significant. Every unit percentage increase in per capita net state domestic product and female literacy led to 0.31% and 0.54% decline, while a 1% increase in under-five diarrhoea prevalence led to 0.17% increase in IMR. CONCLUSION: The NHM has contributed to enhancing vertical equity in health-care financing. The States' need to be more responsive to the differences in districts while allocating health-care resources. There needs to be a focus on spending on social determinants, which should be the cornerstone for any universal health coverage strategy.


Subject(s)
Infant Mortality , Humans , India , Cross-Sectional Studies , Infant , Infant Mortality/trends , Financing, Government/statistics & numerical data , Female , Health Expenditures/statistics & numerical data , Health Services Needs and Demand/economics , Public Expenditures , Male , Socioeconomic Factors
10.
Hawaii J Health Soc Welf ; 83(6): 158-161, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38855707

ABSTRACT

Hawai'i experiences some of the highest rates of houselessness per capita in the country. COVID-19 has exacerbated these disparities and made it difficult for these individuals to seek medical care. Hawai'i's Houseless Outreach in Medical Education (HOME) clinic is the largest student run free clinic in the state, which provides medical services to this patient population. This article reports the demographics, medical needs, and services provided to patients of Hawai'i's HOME clinic during the era of COVID-19. From September 2020 to 2021, the HOME clinic saw 1198 unique visits with 526 distinct patients. The most common chief complaints included wound care (42.4%), pain (26.9%), and skin complaints (15.7%). A large portion of the population suffered from comorbidities including elevated blood pressure (66%), a formal reported history of hypertension (30.6%), diabetes (11.6%), and psychiatric concerns including schizophrenia (5.2%) and generalized anxiety (5.1%). Additionally, a large portion of patients (57.2%) were substance users including 17.8% of patients endorsing use of alcohol, 48.5% tobacco and 12.5% marijuana. The most common services provided were dispensation of medication (58.7%), wound cleaning/dressing changes (30.7%), and alcohol or other drug cessation counseling (25.2%). This study emphasizes that the houseless are a diverse population with complex, evolving medical needs and a high prevalence of chronic diseases and comorbidities.


Subject(s)
COVID-19 , Student Run Clinic , Humans , Hawaii/epidemiology , COVID-19/epidemiology , Male , Female , Adult , Middle Aged , Student Run Clinic/statistics & numerical data , Adolescent , Young Adult , Aged , SARS-CoV-2 , Ambulatory Care Facilities/statistics & numerical data , Ambulatory Care Facilities/organization & administration , Health Services Needs and Demand/statistics & numerical data , Comorbidity , Ill-Housed Persons/statistics & numerical data
12.
Clin J Oncol Nurs ; 28(3): 241-246, 2024 May 17.
Article in English | MEDLINE | ID: mdl-38830256

ABSTRACT

Moving Beyond Cancer to Wellness is a patient- and caregiver-focused educational outreach event with an inspirational message and lectures that address common concerns among cancer survivors. This event is open to the communi.


Subject(s)
Cancer Survivors , Neoplasms , Humans , Cancer Survivors/psychology , Neoplasms/nursing , Female , Male , Health Services Needs and Demand , Middle Aged , Patient Education as Topic , Caregivers/psychology , Caregivers/education
13.
BMC Prim Care ; 25(1): 204, 2024 Jun 08.
Article in English | MEDLINE | ID: mdl-38851670

ABSTRACT

BACKGROUND: As the U.S. population ages, family members increasingly act as informal caregivers, particularly for minority patients and those with limited English proficiency (LEP). However, physicians often do not identify or engage caregivers until there is a health crisis. This study aims to further our understanding of characteristics associated with having a caregiver present at a primary care visit, and better understand the specific roles family caregivers engage in to support older Chinese and Latino primary care patients. METHODS: Primary care patients were surveyed by telephone in a study of language access and communication. Participants included Chinese and Latino primary care patients (≥ 65 years old) from an academic general medicine practice. We asked patients if anyone was in the room with them during their most recent primary care visit (yes = caregiver accompanied). We asked about caregiving support for various needs, and examined associations of patient and visit characteristics with being accompanied, and frequency of caregiver support roles overall and by caregiver accompaniment. RESULTS: Among 906 participants, 80% preferred a non-English language, 64% were women, 88% had Medicare, and mean age was 76 years (range 65-97). 43% were accompanied to their most recent visit. Speaking English 'not at all' vs. 'very well' was associated with being caregiver accompanied (OR 3.5; 95% CI 1.3-9.7), as was older age ≥ 75 vs. 65-74 (OR 2.7; 95% CI 2.0-3.7). The most common roles being supported by caregivers included: transportation to medical appointments (63%), helping with medical decisions (60%), and talking with the doctor about the patient's medical care (54%). Even among unaccompanied patients, substantial proportions reported caregiver support with medical decisions (45%), talking with the doctor (33%), and medical needs at home (26%). CONCLUSIONS: Opportunities for physicians to engage caregivers who have active support roles may be missed, especially if those caregivers are not present at the visit. Future interventions should aim to help physicians identify which patients have caregivers and for what needs, so they may effectively engage caregivers before a health crisis occurs.


Subject(s)
Caregivers , Hispanic or Latino , Primary Health Care , Humans , Female , Male , Aged , Hispanic or Latino/psychology , Caregivers/psychology , Aged, 80 and over , Asian , Communication Barriers , Age Factors , United States , Physician-Patient Relations , Limited English Proficiency , Health Services Needs and Demand , East Asian People
14.
BMC Pediatr ; 24(1): 297, 2024 May 03.
Article in English | MEDLINE | ID: mdl-38702636

ABSTRACT

BACKGROUND: Parents/caregivers of children with developmental disabilities (CDD) have a wide range of support needs and there are various interventions available. Support, challenges, and needs among parents/caregivers of CDD likely vary in different geographical settings. This study aimed to analyze the perceptions of support, challenges, and needs among parents/caregivers of CDD in Croatia, North Macedonia, and Serbia. METHODS: We conducted a cross-sectional study in March-April 2023 within the Erasmus + SynergyEd project. The eligible participants were parents and caregivers of CDD in Croatia, North Macedonia, and Serbia, who filled out a modified Caregiver Needs Survey online. RESULTS: Among 953 participants, 542 (57%) were from Croatia, 205 (21%) were from North Macedonia and 206 (22%) were from Serbia. The most common diagnosis of participants' children was autism spectrum disorder (26%). The child most often received the first diagnosis at the median of 2 years, diagnosed by a team of professionals. More than half (58%) of children attended preschool and public school, while 22% did not attend any schooling. Additional support from the state/city/county was received by 66% of CDD. Most participants declared not participating in association/organization for family support. Participants mostly (68%) used experts who work with the child as a source of information about their child's condition, followed by the Internet (53%). In the last 12 months, 60% of participants had difficulties with the availability of services in their area or problems getting appointments. The biggest problem in getting support was ensuring the child's basic rights were protected. Participants stated that ensuring greater rights for CDD was the greatest need for their families. CONCLUSION: Parents/caregivers of CDD in Croatia, North Macedonia, and Serbia faced multiple challenges, but most of them were satisfied with the services provided to their children. Future efforts to develop policies and services related to CDD should consider the opinions of their parents/caregivers and disparities in access to services.


Subject(s)
Caregivers , Developmental Disabilities , Parents , Humans , Cross-Sectional Studies , Parents/psychology , Caregivers/psychology , Male , Female , Serbia , Child , Croatia , Republic of North Macedonia , Child, Preschool , Developmental Disabilities/therapy , Adult , Health Services Needs and Demand , Needs Assessment , Adolescent , Middle Aged , Social Support , Surveys and Questionnaires , Infant
15.
BMC Health Serv Res ; 24(1): 585, 2024 May 04.
Article in English | MEDLINE | ID: mdl-38704571

ABSTRACT

BACKGROUND: The 5.8 million Ukrainian refugees arriving in European countries must navigate varying healthcare systems and different and often unknown languages in their respective host countries. To date, there has been little exploration of the experiences, perceived differences, information and support needs of these refugees regarding the use of healthcare in Germany. METHODS: We conducted ten qualitative interviews with Ukrainian refugees living in Germany from February to May 2023, using Ukrainian, English and German language. The transcribed interviews were analysed using the qualitative content analysis method according to Kuckartz and Rädiker with the MAXQDA software. RESULTS: In general, participants consistently had a positive experience of the German healthcare system, particularly regarding the quality of treatments and insurance. Differences have been reported in the structure of the healthcare systems. The Ukrainian healthcare system is divided into private and state sectors, with no mandatory insurance and frequent out-of-pocket payments. Pathways differ and tend to focus more on clinics and private doctors. General practitioners, often working in less well-equipped offices, have only recently gained prominence due to healthcare system reforms. Initiating contact with doctors is often easier, with much shorter waiting times compared to Germany. Interviewees often found the prescription requirements for many medications in Germany to be unusual. However, the mentioned differences in healthcare result in unmet information needs among the refugees, especially related to communication, navigating the healthcare system, health insurance, waiting times and medication access. These needs were often addressed through personal internet research and informal (social media) networks because of lacking official information provided during or after their arrival. CONCLUSIONS: Despite the positive experiences of Ukrainian refugees in the German healthcare system, differences in the systems and language barriers led to barriers using healthcare and information needs among refugees. The dissemination of information regarding characteristics of the German health care system is crucial for successful integration but is currently lacking. TRIAL REGISTRATION: German Clinical Trials Register: DRKS00030942, date of registration: 29.12.2022.


Subject(s)
Qualitative Research , Refugees , Humans , Refugees/psychology , Refugees/statistics & numerical data , Germany , Ukraine , Male , Female , Adult , Middle Aged , Health Services Accessibility , Interviews as Topic , Delivery of Health Care , Health Services Needs and Demand , Needs Assessment
16.
Health Aff (Millwood) ; 43(5): 674-681, 2024 May.
Article in English | MEDLINE | ID: mdl-38709966

ABSTRACT

Assisted living has promised assistance and quality of living to older adults for more than eighty years. It is the largest residential provider of long-term care in the United States, serving more than 918,000 older adults as of 2018. As assisted living has evolved, the needs of residents have become more challenging; staffing shortages have worsened; regulations have become complex; the need for consumer support, education, and advocacy has grown; and financing and accessibility have become insufficient. Together, these factors have limited the extent to which today's assisted living adequately provides assistance and promotes living, with negative consequences for aging in place and well-being. This Commentary provides recommendations in four areas to help assisted living meet its promise: workforce; regulations and government; consumer needs and roles; and financing and accessibility. Policies that may be helpful include those that would increase staffing and boost wages and training; establish staffing standards with appropriate skill mix; promulgate state regulations that enable greater use of third-party services; encourage uniform data reporting; provide funds supporting family involvement; make community disclosure statements more accessible; and offer owners and operators incentives to facilitate access for consumers with fewer resources. Attention to these and other recommendations may help assisted living live up to its name.


Subject(s)
Assisted Living Facilities , Humans , United States , Aged , Health Services Accessibility , Long-Term Care/economics , Aged, 80 and over , Health Services Needs and Demand
18.
Pediatrics ; 153(6)2024 May 07.
Article in English | MEDLINE | ID: mdl-38712452

ABSTRACT

OBJECTIVE: To describe the prevalence, characteristics, and health-related outcomes of children with diagnosed health conditions and functional difficulties who do not meet criteria for having a special health care need based on the traditional scoring of the Children with Special Health Care Needs (CSHCN) Screener. METHODS: Data come from the 2016 to 2021 National Survey of Children's Health (n = 225 443). Child characteristics and health-related outcomes were compared among 4 mutually exclusive groups defined by CSHCN Screener criteria and the presence of both conditions and difficulties. RESULTS: Among children who do not qualify as children and youth with special health care needs (CYSHCN) on the CSHCN Screener, 6.8% had ≥1 condition and ≥1 difficulty. These children were more likely than CYSHCN to be younger, female, Hispanic, uninsured, privately insured, living in a household with low educational attainment, have families with more children and a primary household language other than English. After adjustment, non-CYSHCN with ≥1 conditions and ≥1 difficulty were less likely than CYSHCN, but significantly more likely than other non-CYSHCN, to have ≥2 emergency department visits, have unmet health care needs, not meet flourishing criteria, live in families that experienced child health-related employment impacts and frustration accessing services. Including these children in the calculation of CYSHCN prevalence increases the national estimate from 19.1% to 24.6%. CONCLUSIONS: Approximately 4 million children have both a diagnosed health condition and functional difficulties but are not identified as CYSHCN. An expanded approach to identify CYSHCN may better align program and policy with population needs.


Subject(s)
Disabled Children , Humans , Child , Female , Adolescent , Male , Disabled Children/statistics & numerical data , Child, Preschool , United States/epidemiology , Infant , Health Services Needs and Demand , Health Surveys , Prevalence
19.
Cien Saude Colet ; 29(5): e17652022, 2024 May.
Article in Portuguese, English | MEDLINE | ID: mdl-38747779

ABSTRACT

The complexities referred to in the search for "accuracy" in the diagnosis of cystic fibrosis (CF) point to reflections around "what is needed" in the current situation of "precision medicine". We analyzed the discourses of 19 social actors belonging to the community of specialists in cystic fibrosis, exploring the semantic meanings of the word "precision", and the barriers to diagnosis and innovations in therapeutics. We adopted the critical discourse analysis (CDA) of Norman Fairclough in order to achieve the discursive constructions around the integrality of care, the guarantee and equitable supply of basic social needs. Access was identified as an emic category when in the social arenas of dispute are health needs and the right to life.


As complexidades referidas na busca pela "exatidão" no diagnóstico da fibrose cística (FC) apontam para reflexões em torno de "o que é preciso" na atual conjuntura da "medicina de precisão". Analisamos os discursos de 19 atores sociais pertencentes à comunidade de especialistas na fibrose cística, explorando as acepções semânticas do vocábulo "precisão" e as barreiras ao diagnóstico e às inovações na terapêutica. Adotamos a análise crítica do discurso de Norman Fairclough a fim de alcançar as construções discursivas em torno da integralidade do cuidado, da garantia e oferta equitativa dos básicos sociais. O acesso foi identificado como categoria êmica quando nas arenas sociais de disputa estão as necessidades de saúde e o direito à vida.


Subject(s)
Cystic Fibrosis , Health Services Accessibility , Cystic Fibrosis/diagnosis , Cystic Fibrosis/therapy , Humans , Precision Medicine/methods , Health Services Needs and Demand , Right to Health
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