RESUMO
BACKGROUND: The number of cancer survivors has increased in recent decades, and the majority of them suffer from sequelae of their disease and treatment. This study, which is part of the larger research project OPTILATER, aims to explore different aspects of care services for long-term survivors (≥ 5 years after initial cancer diagnosis) in Germany. The study places an emphasis on the situation of people from different age groups, with different socio-demographic and cultural backgrounds, and sexually and gender diverse individuals. METHODS: To investigate experiences related to follow-up care, focus groups (n = 2) will be conducted with members of patient advisory councils and advocacy groups, representatives of communities, healthcare workers and networks, as well as members of Associations of Statutory Health Insurance Physicians. Guided interviews will be carried out with patients and relatives (n = 40) to investigate needs, barriers and obstacles in terms of follow-up care. On this basis, additional focus groups (n = 2) will be carried out to derive possible scenarios for improving the consideration of needs. Focus groups and interviews will follow a semi-structured format and will be analysed content-analytically. Focus groups and interviews will be conducted online, recorded, transcribed, and analysed independently by two persons. DISCUSSION: The qualitative approach is considered suitable because of the exploratory research aims. The identification of experiences and barriers can reveal disparities and optimization potential in the care of long-term cancer survivors.
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Sobreviventes de Câncer , Grupos Focais , Neoplasias , Pesquisa Qualitativa , Humanos , Sobreviventes de Câncer/psicologia , Feminino , Masculino , Neoplasias/terapia , Neoplasias/psicologia , Alemanha , Necessidades e Demandas de Serviços de Saúde , Pessoa de Meia-Idade , Adulto , IdosoRESUMO
BACKGROUND: Transgender women - individuals assigned male at birth but who identify as female - are disproportionately affected by, among others, human immunodeficiency virus (HIV), other sexually transmitted diseases (STIs) and mental health issues. Studies show that transgender women often encounter discrimination and stigma when seeking healthcare from health facilities. AIM: This study assessed the healthcare needs of transgender women, their experiences of the mainstream healthcare system and alternative strategies for navigating the healthcare system. SETTING: The study was carried out in the City of Ekurhuleni Metropolitan Council in South Africa's Gauteng province. METHODS: A case study design was followed. Participants were purposively selected and included 10 transgender women aged 26-50. Individual semi-structured interviews were conducted over 2 months. RESULTS: Participants expressed a need for hormone replacement therapy, HIV treatment and prevention and treatment for STIs. Experiences of participants within the healthcare system were predominantly negative, with instances of discrimination, stigma and privacy violations being commonplace. Alternative strategies to meet their healthcare needs included the use of self-medication, consulting traditional healers and utilising non-governmental organisations. CONCLUSION: There is an urgent need for equitable and inclusive health management of transgender women in South Africa.Contribution: This study provided a first look in a South African context into how and to what extent transwomen employ alternative healthcare strategies such as self-medication and utilising non-governmental organisations when faced with mainstream healthcare access barriers. The use of traditional doctors was identified as a novel, alternative strategy used by transwomen to access healthcare and treatment.
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Infecções por HIV , Acessibilidade aos Serviços de Saúde , Infecções Sexualmente Transmissíveis , Estigma Social , Pessoas Transgênero , Humanos , Feminino , Pessoas Transgênero/psicologia , Adulto , África do Sul , Pessoa de Meia-Idade , Masculino , Infecções Sexualmente Transmissíveis/prevenção & controle , Pesquisa Qualitativa , Necessidades e Demandas de Serviços de Saúde , Entrevistas como Assunto , Terapia de Reposição Hormonal , Aceitação pelo Paciente de Cuidados de Saúde/psicologiaRESUMO
ABSTRACT: The COVID-19 pandemic drastically affected health care delivery for vulnerable populations. Many facilities shifted services to telemedicine, and people with HIV or at risk of acquiring HIV experienced interruptions in care. Simultaneously, traditional training approaches to help providers adapt were disrupted. Using a mixed method approach to examine changes over time, we integrated data on trainee needs collected by the Mountain West AIDS Education and Training Center (AETC): a 10-state needs assessment survey in 2020; feedback from a 2020 community of practice; aggregate training data from 2000 to 2022; and a second survey in 2022. HIV care providers' training needs evolved from wanting support on telemedicine and COVID-19 patient care issues, to a later focus on mental health and substance use, social determinants of health, and care coordination. This integrative analysis demonstrates the vital role that AETCs can play in addressing evolving and emergent public health challenges for the HIV workforce.
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COVID-19 , Infecções por HIV , Pessoal de Saúde , Avaliação das Necessidades , SARS-CoV-2 , Humanos , COVID-19/epidemiologia , Infecções por HIV/epidemiologia , Pessoal de Saúde/educação , Telemedicina , Mão de Obra em Saúde , Estados Unidos/epidemiologia , Pandemias , Atenção à Saúde/organização & administração , Necessidades e Demandas de Serviços de Saúde , Inquéritos e Questionários , Feminino , MasculinoRESUMO
The NHS 111 service triages over 16,650,745 calls per year and approximately 48% of callers are triaged to a primary care disposition, such as a telephone appointment with a general practitioner (GP). However, there has been little assessment of the ability of primary care services to meet this demand. If a timely service cannot be provided to patients, it could result in patients calling 999 or attending emergency departments (ED) instead. This study aimed to explore the patient journey for callers who were triaged to a primary care disposition, and the ability of primary care services to meet this demand. We obtained routine, retrospective data from the Connected Yorkshire research database, and identified all 111 calls between the 1st January 2021 and 31st December 2021 for callers registered with a GP in the Bradford or Airedale region of West Yorkshire, who were triaged to a primary care disposition. Subsequent healthcare system access (111, 999, primary and secondary care) in the 72 hours following the index 111 call was identified, and a descriptive analysis of the healthcare trajectory of patients was undertaken. There were 56,102 index 111 calls, and a primary care service was the first interaction in 26,690/56,102 (47.6%) of cases, with 15,470/26,690 (58%) commenced within the specified triage time frame. Calls to 999 were higher in the cohort who had no prior contact with primary care (58% vs 42%) as were ED attendances (58.2% vs 41.8), although the proportion of avoidable ED attendances was similar (10.5% vs 11.8%). Less than half of 111 callers triaged to a primary care disposition make contact with a primary care service, and even when they do, call triage time frames are frequently not met, suggesting that current primary care provision cannot meet the demand from 111.
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Atenção Primária à Saúde , Triagem , Humanos , Atenção Primária à Saúde/estatística & dados numéricos , Estudos Retrospectivos , Triagem/estatística & dados numéricos , Masculino , Feminino , Pessoa de Meia-Idade , Adulto , Idoso , Medicina Estatal , Adolescente , Serviço Hospitalar de Emergência/estatística & dados numéricos , Adulto Jovem , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Criança , Lactente , Pré-Escolar , Idoso de 80 Anos ou mais , Acessibilidade aos Serviços de Saúde/estatística & dados numéricosRESUMO
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.
Assuntos
Sobreviventes de Câncer , Neoplasias , Humanos , Sobreviventes de Câncer/psicologia , Neoplasias/enfermagem , Feminino , Masculino , Necessidades e Demandas de Serviços de Saúde , Pessoa de Meia-Idade , Educação de Pacientes como Assunto , Cuidadores/psicologia , Cuidadores/educaçãoRESUMO
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.
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Serviços de Saúde Mental , Programas de Troca de Agulhas , Transtornos de Estresse Pós-Traumáticos , Humanos , Transtornos de Estresse Pós-Traumáticos/epidemiologia , Transtornos de Estresse Pós-Traumáticos/terapia , Masculino , Feminino , Adulto , Programas de Troca de Agulhas/estatística & dados numéricos , Cidade de Nova Iorque/epidemiologia , Pessoa de Meia-Idade , Serviços de Saúde Mental/estatística & dados numéricos , Transtornos Relacionados ao Uso de Opioides/epidemiologia , Abuso de Substâncias por Via Intravenosa/epidemiologia , Preferência do Paciente , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Prevalência , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricosRESUMO
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.
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Acessibilidade aos Serviços de Saúde , Doença de Parkinson , Equipe de Assistência ao Paciente , Telemedicina , Humanos , North Carolina , Telemedicina/organização & administração , Doença de Parkinson/terapia , Feminino , Masculino , Pessoa de Meia-Idade , Idoso , Equipe de Assistência ao Paciente/organização & administração , Necessidades e Demandas de Serviços de Saúde , Adulto , População Rural , Idoso de 80 Anos ou maisRESUMO
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.
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Pesquisa Qualitativa , Refugiados , Refugiados/psicologia , Humanos , Estados Unidos , Feminino , Masculino , Necessidades e Demandas de Serviços de Saúde , Acessibilidade aos Serviços de Saúde , Atenção à Saúde , Adulto , Participação dos Interessados , Pessoal de Saúde/psicologia , Doença Crônica/epidemiologiaRESUMO
INTRODUCTION: Uganda has a high demand for neurosurgical and neurological care. 78% of the over 50 million population reside in rural and remote communities where access to neurosurgical and neurological services is lacking. This study aimed to determine the feasibility, appropriateness, and usability of mobile neuro clinics (MNCs) in providing neurological care to rural and remote Ugandan populations. METHODS: Neurosurgery, neurology, and mobile health clinic providers participated in an education and interview session to assess the feasibility, appropriateness, and usability of the MNC intervention. A qualitative analysis of the interview responses using the constructs in the updated Consolidated Framework for Implementation Research was performed. Providers' opinions were weighted using average sentiment scores on a novel sentiment-weighted scale adapted from the CFIR. A stakeholder analysis was also performed to assess the power and interest of the actors described by the participants. RESULTS: Twenty-one healthcare providers completed the study. Participants discussed the potential benefits and concerns of MNCs as well as potential barriers and critical incidents that could jeopardize the intervention. Of the five CFIR domains evaluated, variables in the implementation process domain showed the highest average sentiment scores, followed by the implementation climate constructs, inner setting, innovation, and outer setting domains. Furthermore, many interested stakeholders were identified with diverse roles and responsibilities for implementing MNCs. These findings demonstrate that MNC innovation is feasible, appropriate, and usable. CONCLUSION: The findings of this study support the feasibility, appropriateness, and usability of MNCs in Uganda. However, integration of this innovation requires careful planning and stakeholder engagement at all levels to ensure the best possible outcomes.
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Estudos de Viabilidade , Humanos , Uganda , Unidades Móveis de Saúde , Feminino , Masculino , Pessoal de Saúde/psicologia , Neurocirurgia , Neurologia , Adulto , População Rural , Necessidades e Demandas de Serviços de Saúde , Acessibilidade aos Serviços de Saúde , Procedimentos NeurocirúrgicosRESUMO
OBJECTIVES: To identify the needs of people with long COVID (LC) in the UK. DESIGN: Qualitative study using the Framework Analysis to analyse focus group discussions. PARTICIPANTS: 25 adults with LC aged 19-76 years including 17 men and 8 women. Average disease duration was 80.1 weeks. SETTING: Eight focus groups were conducted in April 2023 online and in-person at the University of Leeds (UoL), UK. Recruitment routes included advertisement via Leeds Community Healthcare services, the English National Opera Breathe Programme and within the UoL. RESULTS: Three key themes/needs were identified. (Theme 1) Support systems including community groups, disability benefits, clinical services and employment support should be accessible and tailored to the needs of people with LC. (Theme 2) Research should investigate the physiology of symptoms, new clinical tests and treatment interventions to improve clinical understanding of the condition and symptom management. (Theme 3) Societal awareness should be promoted via local and national initiatives to educate the public about the condition and reduce stigma. CONCLUSIONS: Participants experienced varied and individual challenges to daily life due to LC. There is a need for government acknowledgement of LC as a disability to ensure people with LC have access to disability support and legal protection. Policy development should be patient-driven and acknowledge the individual needs of people with LC in order to improve their quality of life.
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COVID-19 , Grupos Focais , Pesquisa Qualitativa , Humanos , Feminino , Masculino , Pessoa de Meia-Idade , Idoso , Adulto , Reino Unido , COVID-19/epidemiologia , Avaliação das Necessidades , SARS-CoV-2 , Adulto Jovem , Síndrome de COVID-19 Pós-Aguda , Necessidades e Demandas de Serviços de SaúdeRESUMO
BACKGROUND: The average age for menopause is 51 years, this is preceded by a transitional perimenopausal stage, with vasomotor symptoms, muscular and joint pain, lowered libido and disordered sleep, impacting on mental health. In some women, the quality of life is considerably affected. This remains under-reported. There is no national screening service, or specialised clinics for menopausal services available in primary care. AIM: We undertook a survey of women in primary care as part of a needs assessment to understand the prevalence of peri- and menopausal symptoms, women's knowledge of these symptoms, and available treatment options. METHOD: A questionnaire was sent to women aged 45-65 years registered with the practice. RESULTS: Of a total of 73 women, 78.1% complained of >4 symptoms. The most common symptoms were memory problems and brain fog (80.6%), sleep disturbance (72.1%) and muscle/joint pain (72.1%). Women were asked to rate their knowledge of therapy options on a self-reported scale of 0-10; a high proportion (64.3%) rated <4 points. They had better knowledge of symptoms, 79.3% rated >4 points. A high proportion (58.9%) rated inadequate support received from primary care and 75.3% felt they had no support at all. CONCLUSION: Our results of this preliminary study showed the vast majority of women were unaware of treatment options for their menopausal symptoms and felt they received inadequate to no support from primary care providers. The present ongoing study highlights lack of resource allocation to women's health and insufficient commissioning of services to address this health need.
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Menopausa , Avaliação das Necessidades , Atenção Primária à Saúde , Humanos , Feminino , Pessoa de Meia-Idade , Idoso , Inquéritos e Questionários , Qualidade de Vida , Transtornos do Sono-Vigília/terapia , Conhecimentos, Atitudes e Prática em Saúde , Necessidades e Demandas de Serviços de Saúde , Fogachos/terapia , ArtralgiaRESUMO
BACKGROUND: Around one in four people are living with multiple long-term conditions (MLTC). Integrated care to holistically manage both health and social needs could improve outcomes for people living with MLTC, including lower rates of hospitalisation and mortality. However, given the number of people with MLTC and increasing strain on health and social care, stratified approaches to identifying and addressing social care needs may be more efficient and cost-effective. We have developed data driven clusters that group people with similar health and social care needs, which could identify patients at the highest risk of poor outcomes related to social care need. AIM: To explore views about a future intervention based on these clusters. METHOD: We aim to plan a cluster-based intervention that engages people living with MLTC and health and social care professionals to consider social care needs (SCNs) when consulting in primary care. We have conducted 14 interviews with professionals to explore their priorities and concerns about care delivery by MLTC clusters and 19 remote interviews with people living with MLTC to find out how well they identify with the MLTC clusters we have defined. Data were analysed using reflexive thematic analysis. RESULTS: GPs are the 'starting point' for conversations about SCNs but need an efficient system to enable effective conversations. The cluster-based intervention could fill this gap. CONCLUSION: This research identifies key considerations needed for an intervention to engage people with MLTC and health and social care professionals to consider SCNs in primary care.
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Pesquisa Qualitativa , Humanos , Atenção Primária à Saúde , Masculino , Atitude do Pessoal de Saúde , Feminino , Múltiplas Afecções Crônicas/terapia , Análise por Conglomerados , Necessidades e Demandas de Serviços de Saúde , Pessoa de Meia-Idade , Serviço Social , Avaliação das NecessidadesRESUMO
BACKGROUND: Parkinson's disease (PD) significantly impacts the health-related quality of life of affected individuals and their relatives. In order to support the affected individuals and their families in coping with PD, it is essential to offer comprehensive information about their experiences. A comprehensive understanding of their lived experiences with the disease, the healthcare system, applied self-management strategies and their needs is considered crucial for developing a PD support program. Therefore, we aimed to explore the lived experiences and support needs of individuals with PD and their relatives in Germany. METHODS: This non-interventional, qualitative study conducted an explorative status quo and needs assessment. It generated knowledge through semi-structured focus groups and interviews with individuals with PD at various disease stages and their relatives. The interviews were digitally recorded, transcribed verbatim, and analysed using content analysis. RESULTS: Fifty-two individuals with PD and 29 relatives participated in eight focus groups and 13 paired and 13 individual interviews. Four themes with corresponding subthemes emerged: (1) experiences, revealing individuals' experiences around their diagnosis and with disease-specific care provision; (2) management support offers, clarifying who provides support and the type of support offered; (3) self-management, including comprehensibility, meaningfulness and manageability; and (4) future needs, differentiating between deficits and needs. Most participants expressed a sense of abandonment when obtaining self-management strategies and mastering their lives with PD, often referred to as 'life 2.0'. They identified the lack of structured and adequate provision of information, system orientation and social awareness. CONCLUSIONS: In Germany, there is an urgent need for a comprehensive PD care program that addresses the needs of individuals with PD and their relatives from the start of their care trajectory. It could assist individuals in gaining a comprehensive understanding of the disease, obtaining self-management strategies, building a support network, and becoming experts in self-managing their disease. Moreover, it may positively influence their care trajectory and reduce burdens, such as overburdening, fear of progression, and health anxiety. TRIAL REGISTRATION: German Clinical Studies Register ( https://www.drks.de/DRKS00030090 , No. DRKS00030090, Date of registration: 15.12.2022).
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Família , Doença de Parkinson , Pesquisa Qualitativa , Autogestão , Humanos , Masculino , Alemanha/epidemiologia , Doença de Parkinson/terapia , Doença de Parkinson/psicologia , Feminino , Autogestão/métodos , Autogestão/psicologia , Pessoa de Meia-Idade , Idoso , Família/psicologia , Grupos Focais/métodos , Adulto , Gerenciamento Clínico , Avaliação das Necessidades , Apoio Social , Idoso de 80 Anos ou mais , Qualidade de Vida/psicologia , Cuidadores/psicologia , Necessidades e Demandas de Serviços de SaúdeRESUMO
BACKGROUND: The second leading cause of death in Italy is cancer. Substantial disparities persist in the level of care and outcomes for cancer patients across various communities, hospitals, and regions in Italy. While substantial progress has been made in medical research and treatment options, these advancements tend to disproportionately benefit the wealthier, better-educated, and more privileged areas and portions of the population. Therefore, the primary aim of the current study is to explore possible reasons for inequalities in access to and utilisation of care from the perspective of cancer patients, who are recipients of these treatments, and healthcare providers, who are responsible for their administration. METHODS: After being recruited through social media platforms, patients' organisations, and hospital websites, cancer patients (n = 22) and healthcare providers (n = 16) from various Italian regions participated in online focus group discussions on disparities in access to and provision of care. Video and audio recordings of the interviews were analysed using Thematic analysis. RESULTS: Among cancer patients, 7 themes were identified, while 6 themes emerged from the healthcare providers highlighting encountered barriers and unmet needs in cancer care. Most of these emerging themes are common to both groups, such as geographical disparities, information deficiencies, and the importance of psycho-oncological support. However, several themes are specific to each group, for instance, cancer patients highlight the financial burden and the poor interactions with healthcare providers, while healthcare providers emphasise the necessity of establishing a stronger specialists' network and integrating clinical practice and research. CONCLUSION: Current findings reveal persistent challenges in cancer care, including long waiting lists and regional disparities, highlighting the need for inclusive healthcare strategies. The value of psycho-oncological support is underscored, as well as the potential of the Internet's use for informational needs, emphasising the imperative for improved awareness and communication to overcome disparities in cancer care.
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Pessoal de Saúde , Acessibilidade aos Serviços de Saúde , Disparidades em Assistência à Saúde , Neoplasias , Pesquisa Qualitativa , Humanos , Itália , Neoplasias/terapia , Neoplasias/psicologia , Feminino , Masculino , Pessoal de Saúde/psicologia , Pessoa de Meia-Idade , Adulto , Grupos Focais , Idoso , Necessidades e Demandas de Serviços de SaúdeRESUMO
BACKGROUND: Surgical services are scarce with persisting inequalities in access across populations and regions globally. As the world's most populous county, India's surgical need is high and delivery rates estimated to be sub-par to meet need. There is a dearth of evidence, particularly sub-regional data, on surgical provisioning which is needed to aid planning. AIM AND METHOD: This mixed-methods study examines the state of surgical care in Northeast India, specifically health care system capacity and barriers to surgical delivery. It involved a facility-based census and semi-structured interviews with surgeons and patients across four states in the region. RESULTS: Abdominal conditions constituted a large portion of the overall surgeries across public and private facilities in the region. Workloads varied among surgical providers across facilities. Task-shifting occurred, involving non-specialist nursing staff assisting doctors with surgical procedures or surgeons taking on anaesthetic tasks. Structural factors dis-incentivised facility-level investment in suitable infrastructure. Facility functionality was on average higher in private providers compared to public providers and private facilities offer a wider range of surgical procedures. Facilities in general had adequate laboratory testing capability, infrastructure and equipment. Public facilities often do not have surgeon available around the clock while both public and private facilities frequently lack adequate blood banking. Patients' care pathways were shaped by facility-level shortages as well as personal preferences influenced by cost and distance to facilities. DISCUSSION AND CONCLUSION: Skewed workloads across facilities and regions indicate uneven surgical delivery, with potentially variable care quality and provider efficiency. The need for a more system-wide and inter-linked approach to referral coordination and human resource management is evident in the results. Existing task-shifting practices, along with incapacities induced by structural factors, signal the directions for possible policy action.
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Atenção à Saúde , Humanos , Índia , Masculino , Feminino , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Procedimentos Cirúrgicos Operatórios , Adulto , Acessibilidade aos Serviços de Saúde , Pessoa de Meia-Idade , Carga de Trabalho , CirurgiõesRESUMO
Background: People with learning disabilities are living longer. Despite government policy to encourage people to lead supported lives in their community, family carers often maintain support due to dissatisfaction with services. This can lead to people moving from the family home in a crisis. Objectives: (1) Find out what is known about health needs and resources for older people with learning disabilities (aged ≥ 40 years); (2) identify exemplars of good services for older people with learning disabilities; (3) explore service exemplars through ethnographic case studies; (4) evaluate support for older people with learning disabilities and their families through co-producing and testing future planning tools and (5) co-produce recommendations and resources. Design and methods: Work package 1 rapid scoping reviews - three reviews focused on the health and social care needs of older people with learning disabilities and 'behaviours that challenge others', and family carers, and the co-ordination of support for this group. Work package 2 scoping and mapping exemplars of good practice - analysis of published service standards to assess excellence criteria, by mapping services, interviews (nâ =â 30), survey (nâ =â 9) and informal discussion with commissioners. Work package 3 ethnography of case studies of exemplar provision; independent supported living (nâ =â 4); residential/nursing home (nâ =â 2); day activities (nâ =â 1), Shared Lives (nâ =â 2). Fieldwork (20 days per model), interviews (nâ =â 77) with older people with learning disabilities, family carers, support staff and commissioners. Work package 4 - co-producing and testing resources for older people with learning disabilities and their families involved interviews and focus groups with 36 people with learning disabilities, parents, and siblings, and experience-based co-design with 11 participants. Eight families evaluated the resources. Work package 5 - three stakeholder workshops co-produced service recommendations. Findings: The reviews confirmed an inadequate evidence base concerning the experiences and support of family carers and older people with learning disabilities and 'behaviours that challenge others'. Criteria of excellence were produced, and a shortlist of 15 services was identified for consideration in work package 3. The ethnographic work found that environmental, organisational and social factors were important, including supporting independence and choice about who people live with, matching staff to people, consistent relationships and adapting to ageing. Practices of institutionalisation were observed. In work package 4, we found that families were worried about the future and unsupported to explore options. 'Planning Ahead' cards and a booklet to record discussions were produced, and the evaluation was positively rated. Finally, formative discussion informed recommendations. Outputs include training packages, a carers' forum, a film, a podcast and academic papers. Conclusions: There is little focus on older people with learning disabilities and family carers. Services vary in their approach to planning for older-age support. Families are unsupported to plan, leaving people without choice. 'Behaviours that challenge others' was found to be unhelpful terminology. Recommendations: A new strategy is recommended for older people with learning disabilities and family carers that encompasses commissioning practices, professional input and peer learning, proactive support in ageing well and excellent service design. Limitations: The COVID-19 pandemic created recruitment challenges. Reliance on providers for recruitment resulted in a lack of diversity in work package 3. Families' plans, and therefore change, may be frustrated by insufficient service resources. Future work: Given the lack of focus in this area, there is a range of future work to consider: experiences of older people with learning disabilities from diverse ethnic backgrounds; supporting people to age and die 'in place'; best practice regarding designing/commissioning services, including housing; the role of social workers; access to nature; accessing mainstream support; and evaluation of the 'Planning Ahead' cards. Trial registration: This trial is registered as ISRCTN74264887. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129491) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 16. See the NIHR Funding and Awards website for further award information.
People with learning disabilities are living longer, but most live with their families, who are also getting older. This is because there are not enough suitable places for people with learning disabilities to live, and family carers worry that the person will not get the right support and have a good life. Our research aimed to improve support for people with learning disabilities and their family carers to plan ahead for a good life. We focused on people who are labelled with 'behaviours that challenge others'. We read what has been written about this area. We looked for and found examples of excellent support for older people with learning disabilities. Researchers and people with learning disabilities and family carers spent time hanging out with people where they live or spend their days to see what support they get. Then we had three meetings with everyone involved and discussed our research findings with people with learning disabilities, family carers, and professionals. We found that people can be supported to live good lives as they grow older. This can be living alone or with people they choose, and it means having staff they like and who like them and being supported to be active. However, we found that ageing of people with learning disabilities is often ignored, and some people were not living good lives. We also found that the label of 'behaviours that challenge others' is unhelpful. We worked with people with learning disabilities and family carers to make a set of cards with pictures and questions to help people plan ahead for a good life. We produced resources and made recommendations to create a new plan for older people with learning disabilities to support people to lead good lives. This is very important because there is a lack of attention to and support for people with learning disabilities as they age.
Assuntos
Cuidadores , Deficiências da Aprendizagem , Humanos , Cuidadores/psicologia , Idoso , Feminino , Masculino , Pessoa de Meia-Idade , Adulto , Apoio Social , Pesquisa Qualitativa , Idoso de 80 Anos ou mais , Antropologia Cultural , Necessidades e Demandas de Serviços de SaúdeRESUMO
Introduction: With the rapid development of artificial intelligence and Internet-of-Things technology, internal support systems among families are gradually weakening, which can no longer satisfy the current demands of older adults. In this context, smart senior care has become a new development direction. However, existing studies on the demand for smart senior care are primarily concentrated in economically developed provinces and mega-cities in eastern China; their research results or conclusions may not apply to underdeveloped areas in the Western region. Therefore, our study selects Lanzhou as a representative city in an underdeveloped western region to investigate the demand of older adults for smart senior care and analyze the influencing factors. Methods: This cross-sectional study included 4,815 older adults from Lanzhou, China. A structured questionnaire was designed to investigate the demands of the older adults for smart senior care and analyze thie influencing factors. The Chi-square test was used for single factor analysis of each variable. The logistic regression model included the statistically significant variables to analyze factors influencing older adults' demand for smart senior care. A significance level of p < 0.05 was considered statistically significant. Results: Among the surveyed older adults, 1,625 (33.75%) expressed a demand for smart senior care. The finding indicated that participants' age, level of education, marital status, monthly income, number of children, type of endowment insurance, and knowledge of smart senior care were significantly associated with their demands for smart senior care (p < 0.05). Notably, medical care emerged as the smart senior care service with the highest demand rate (79.45%). Conclusion: In Lanzhou, older adults show a low level of knowledge but a high demand for smart senior care. Their demand is influenced by personal, family, health conditions, senior care security, and other factors. To advance smart senior care, government departments should accelerate the improvement of the laws and regulations on smart senior care while vigorously enhancing the service's publicity to raise knowledge about it. Additionally, the service contents for smart senior care should be expanded to meet the diversified demands of older adults.