Disability prevention, detection and assistance in primary health care services in the state of São Paulo, Brazil. / Prevenção, detecção e assistência à deficiência em serviços de atenção primária à saúde do Estado de São Paulo, Brasil.

The objective of this study was to assess the performance of primary health care (PHC) services for disability prevention, detection and assistance in the state of São Paulo. The study included 2739 health services, from 514 municipalities. 128 organizational quality indicators of the QualiAB instrument referring to the evaluative dimension "Attention to disability in primary health care services". The association of health care performance score of each domain with independent variables, health assessment, and support network were tested using of multiple linear regression. The performance percentage was 61.6% for all domains, 73.6% for structure (inputs and human resources), 68.7% for qualification of prenatal care, 56.1% for qualification of child health care, 55.8% for prevention of disabilities related to chronic conditions, and 53.9% for attention to people with disabilities and caregivers. There was a significant association with variables related to the type of service and participation in service evaluations. PHC services still perform incipient actions for the prevention, surveillance and diagnosis of disabilities as well as for comprehensive care for people with disabilities.

O objetivo do trabalho consiste em avaliar o desempenho de serviços de atenção primária à saúde (APS) do estado de São Paulo para prevenção, detecção e assistência à deficiência. Realizou-se uma pesquisa avaliativa em 2.739 serviços de saúde em 514 municípios com 128 indicadores da qualidade organizacional do instrumento QualiAB referentes à dimensão avaliativa "Atenção à deficiência em serviços de atenção primária à saúde". Foram utilizadas medidas de desempenho e associações entre os escores de cada domínio e variáveis independentes sobre planejamento, avaliação em saúde e rede de apoio, por meio de regressão linear múltipla. O percentual de desempenho para a dimensão foi de 61,6%, para o domínio estrutura (insumos e recursos humanos), 73,6%, para qualificação da atenção ao pré-natal, 68,7%, qualificação da atenção à saúde da criança, 56,1%, prevenção de incapacidades relacionadas a condições crônicas, 55,8%, e atenção à pessoa com deficiência e ao cuidador, 53,9%. Houve associação significativa com variáveis relacionadas ao tipo de serviço e de participação em avaliações de serviços. Os serviços de APS ainda realizam ações incipientes para prevenção, vigilância e diagnóstico das deficiências, assim como para a atenção integral a pessoas com deficiência.

Space-temporal analysis of the Specialized Services of the Health Care Network for Persons with Disabilities in Brazil.

Considering the institution of the Care Network for People with Disabilities (RCPD) in Brazil, this study analyzed the spatial distribution and the temporal trend of implementing specialized services that received financial support in the first eight years of this policy. We realized an ecological study based on the National Register of Health Facilities data from April/2012 to March/2020. A joinpoint regression was used for temporal trend analysis, and thematic maps were produced for spatial analysis of rehabilitation modalities and types of services. The most available services were physical and intellectual rehabilitation. The Southeast and Northeast regions had a higher concentration of specialized services. Despite the lower number of services, there was an average annual growth between 9.6% and 41.3%. This finding indicates an increase in specialized services for people with disabilities in the period analyzed, but care gaps are still being verified in the macro-regions of Brazil.

Os grupos condutores na governança e implementação da Rede de Cuidados à Pessoa com Deficiência no SUS / The conducting groups in the governance and implementation of the Care Network for People with Disabilities in the SUS

Resumo A Rede de Cuidados à Pessoa com Deficiência estabeleceu a criação de Grupos Condutores Estaduais visando implementar Diretrizes Clínicas e Protocolos e acompanhar as ações desta Rede. O objetivo deste trabalho foi investigar o papel dos grupos condutores na governança e implementação da referida Rede, analisando sua constituição e ações realizadas. Realizou-se pesquisa descritiva, com abordagem qualitativa, multicêntrica, avaliando a fase de implementação da política, realizada nas cinco regiões do país; analisaram-se documentos publicados entre abril/2012 a dezembro/2018, relacionados aos grupos condutores em oito estados. Emergiram duas categorias como resultado da análise de conteúdo: instituição e composição dos grupos condutores e ações realizadas pelos grupos. Identificou-se a instituição de grupo condutor específico para a Rede em seis estados, e em dois estados a condução realiza-se pelos Grupos Estaduais das Redes de Atenção à Saúde. Observou-se heterogeneidade na composição dos grupos e na realização das atribuições previstas, refletindo indefinições da portaria e desafios de cada estado para a regionalização, participação social, planejamento, acompanhamento e monitoramento da rede. Entretanto, destacou-se o protagonismo destes Grupos enquanto espaço de governança gerencial. Salienta-se a necessidade da continuidade de investimentos financeiros, políticos e de gestão para garantir resolutividade, governança e gestão democrática da Rede.

Abstract The Care Network for People with Disabilities established the creation of State Conducting Groups to implement Clinical Guidelines and Protocols and monitor the actions of this Network. This work aimed to investigate the role of conducting groups in the governance and implementation of the referred Network, analyzing its constitution and actions taken. Descriptive research was carried out, with a qualitative, multicentric approach, evaluating the implementation phase of the policy, carried out in the five regions of the country; documents published between April/2012 and December/2018 were analyzed, related to conducting groups in eight states. Two categories emerged as a result of the content analysis: institution and composition of the driving groups and actions carried out by the groups. The institution of a specific conduction group for the Network was identified in six states, and in two states the conduction is carried out by the State Groups of the Health Care Networks. Heterogeneity was observed in the composition of the groups and in the accomplishment of the foreseen attributions, reflecting the lack of definitions of the ordinance and challenges of each state for regionalization, social participation, planning, follow-up and monitoring of the network. However, the protagonism of these Groups was highlighted as a space for managerial governance. The need for continuity of financial, political and management investments is highlighted to guarantee resolution, governance and democratic management of the Network.

Implementation of Health Links coordinated care plans for adults with intellectual and developmental disabilities: Cross-sectoral pilot program.

PROBLEM ADDRESSED: Adults with intellectual and developmental disabilities (IDD) are a complex population that could benefit from improved care coordination across health and social sectors, as they experience poorer health and have higher rates of emergency department use and hospitalization due to ambulatory care-sensitive conditions. OBJECTIVE OF PROGRAM: To pilot a novel, enhanced model of care coordination for complex patients with IDD. PROGRAM DESCRIPTION: Health Links is a provincial care-coordination program for patients with complex health care needs. This pilot program adapted Health Links to include a guide and training specific to adults with IDD to ensure that these patients' needs were met and high-quality, efficient care was provided. CONCLUSION: A tailored care-coordination approach for adults with IDD was able to identify complex patients in need and successfully bridge cross-sectoral care.

Leaving No One Behind: Strengthening Access to Eye Health Programs for People With Disabilities in 6 Low- and Middle-Income Countries.

PURPOSE: To assess the impact of inclusive eye health programs for people with disabilities. DESIGN: A synthesis evaluation study. METHODS: A cross-disciplinary team of ophthalmologists, evaluation, and disability-inclusive development advisors purposively selected evaluation reports of CBM-supported inclusive eye health programs in low- and middle-income countries. Employing a change-promoting paradigm, salient achievements and challenges were narratively analyzed and recommendations suggested based on a previously developed framework for strengthening disability inclusion in eye health programs. RESULTS: Evaluations from 10 programs implemented in 6 countries (Cambodia, Egypt, Ethiopia, Indonesia, Pakistan, Vietnam) from 2011 to 2016 were identified. Training of medical staff and government officials resulted in increased awareness about disability rights and improved physical accessibility of eye health facilities. Relevant information about inclusion in eye health was incorporated in national eye health training curricula in some countries. Information, education, and communication material about eye health neglected patients with hearing and learning impairments. An overly narrow focus on disability inclusion confounded intersectoral barriers to eye health services. Collaboration of eye health staff with disability peoples organizations improved significantly but evidence of its impact was elusive. Collection of disability-disaggregated data posed significant challenges and made it difficult to demonstrate increased access to eye health programs by people with disabilities. CONCLUSIONS: Introduction of disability inclusion in eye health systems of countries with limited resources poses significant challenges. Future programs striving to improve access to eye health services for marginalized populations including people with disabilities might consider more flexible and contextualized approaches.

Use of Transition Resources by Primary Care Providers for Youth With Intellectual and Developmental Disabilities.

Youth with intellectual and developmental disabilities (IDD) often experience difficulties with successful transition from pediatric to adult healthcare. A consultative Transition Clinic for youth with IDD was piloted as a quality improvement project, and assessed the engagement of primary care providers (PCPs) for transition planning after patients were seen in clinic. Although many PCPs found the clinic and resources useful, individual and systemic barriers often prohibited them from participating in transition planning for this patient population. These findings highlight systemic barriers that need to be addressed to ensure successful transition, as well as the need for a specialized Transition Clinic with involvement of specialists with expertise in IDD, such as Developmental-Behavioral Pediatrics, to assist throughout transition process.

Development and perceived effects of an educational programme on quality and safety in medication handling in residential facilities.

OBJECTIVES: To develop and test an educational programme on quality and safety in medication handling for staff in residential facilities for the disabled. METHODS: The continuing pharmacy education instructional design model was used to develop the programme with 22 learning objectives on disease and medicines, quality and safety, communication and coordination. The programme was a flexible, modular seven + two days' course addressing quality and safety in medication handling, disease and medicines, and medication supervision and reconciliation. The programme was tested in five Danish municipalities. Municipalities were selected based on their application for participation; each independently selected a facility for residents with mental and intellectual disabilities, and a facility for residents with severe mental illnesses. Perceived effects were measured based on a questionnaire completed by participants before and after the programme. Effects on motivation and confidence as well as perceived effects on knowledge, skills and competences related to medication handling, patient empowerment, communication, role clarification and safety culture were analysed conducting bivariate, stratified analyses and test for independence. KEY FINDINGS: Of the 114 participants completing the programme, 75 participants returned both questionnaires (response rate = 66%). Motivation and confidence regarding quality and safety in medication handling significantly improved, as did perceived knowledge, skills and competences on 20 learning objectives on role clarification, safety culture, medication handling, patient empowerment and communication. CONCLUSIONS: The programme improved staffs' motivation and confidence and their perceived ability to handle residents' medication safely through improved role clarification, safety culture, medication handling and patient empowerment and communication skills.

Can a Unified Service Delivery Philosophy Be Identified in Aging and Disability Organizations? Exploring Competing Service Delivery Models Through the Voices of the Workforce in These Organizations.

Services for older adults and younger people with disabilities are increasingly merging, as reflected in the creation of Aging and Disability Resource Centers (ADRCs). Using ADRCs to coordinate services is challenging, primarily because these fields have different service delivery philosophies. Independent Living Centers, which serve people with disabilities, have a philosophy that emphasizes consumer control and peer mentoring. However, the aging service delivery philosophy is based in a case management or medical model in which the role of consumers directing their services is less pronounced. Using institutional logics theory and a qualitative research design, this study explored whether a unified service delivery philosophy for ADRCs was emerging. Based on focus groups and questionnaires with staff from ADRCs, findings revealed that competing service delivery models continue to operate in the aging and disability fields.

Enhancing human aspects of care with young people with muscular dystrophy: Results from a participatory qualitative study with clinicians.

BACKGROUND: Most research into clinical care of Duchenne or Becker dystrophinopathies (MD) has focused on slowing progressive muscular weakness and extending lifespan. Scarce attention has been paid to the "human" aspects of care such as psychosocial health, living a fulfilling life, or dealing with disability stigma. This study partnered with clinicians to identify and address local and systemic barriers to these human aspects of care. METHODS: We employed a participatory qualitative design at a multidisciplinary MD clinic using 2 methods: (a) ethnographic observations over a 6-month period of clinic visits of children with MD and families, involving 12 clinicians, and (b) 3 "dialogues" (2-way discussions) with these clinicians to collaboratively analyze practices and co-produce recommendations for change. RESULTS: Our methods produced rich data that, when coanalyzed with clinicians and in consultation with a family advisor, provided deep insights into the practices and underlying assumptions of a neuromuscular clinic. Staff recognized the importance of the human aspects of care but, in reviewing the observational data, identified that it was given insufficient attention in (a) routine clinical processes, (b) clinician-family patterns of interaction, and (c) staffing allocations. CONCLUSION: Although the human aspects of care were important to clinicians in the MD clinic, the routines and nature of the clinic meant these were frequently sidelined for biomedical objectives. We present collaboratively produced practical recommendations toward addressing this disjunction between ideals and practice including developing flexibility to tailor appointment frequency, composition, and length; providing time and physical space for psychosocial aspects of care; and clinician skill building to support child/family expression of "negative" emotions; and discussion of sociopolitical aspects of MD such as living with disability stigma. The study offers a set of considerations that, taking into account individual differences, offer insights for similar clinics elsewhere.

[Governance in a project addressing care of disabled elderly persons within the regional healthcare system of Tuscany, Italy]. / La governance nell'ambito del progetto per l'assistenza agli anziani non autosufficienti nel Sistema Sanitario Regionale Toscano.

Population aging and the concurrent increase of age-related chronic degenerative diseases and disability are associated with an increased proportion of elderly persons who are dependent in activities of daily living (ADL). ADL-dependent persons need continuous and long-term health and social care according to the "taking charge" rationale, in order to warrant access and continuity of care. A healthcare system needs to respond to the long-term and complex needs, such as those of disabled elderly people, by providing appropriate health and social care services in Primary Care. A Primary Health Care system is organized according to two governance levels have distinct aims but are closely inter-dependent in their operational mechanisms. The system governance is accountable for the community and individual health protection while the delivery governance is accountable for the provision of services in accordance with appropriateness, safety and economic criteria. Delivery governance can be considered "integrated governance" as a synergy exists between two decision-making systems guiding provider choices, which are corporate governance and clinical governance. The aim of this study was to analyse the abovementioned governance levels within the healthcare system in Tuscany (Italy) referring to long-term residential care for disabled elderly people. The case of excessive accesses to emergency departments from different types of Nursing Homes (NH) is used as an example to analyse different levels of responsibility involved in the management of a critical phenomenon. Suggestions for improvement in the different levels of governance for disabled elderly people are provided, in order to support institutional programming activities.

Specific needs of families of young adults with profound intellectual disability during and after transition to adulthood: What are we missing?

INTRODUCTION: At the age of 21, the trajectory of services offered to youth with profound intellectual disability (ID) change significantly since access to specialised services is more limited. Despite the desire of parents to avoid any impact on their child, several factors can influence the course of this transition. However, there is little research on facilitators and obstacles to the transition to adulthood, and impacts on people with a profound ID. It is therefore difficult to provide solutions that meet their specific needs. OBJECTIVE: The study aimed to document the needs of parents and young adults with profound ID during and after the transition to adulthood by exploring their transitioning experience and factors that influenced it. METHOD: Using a descriptive qualitative design, two individual semi-structured interviews were conducted with fourteen (14) parents of young adults aged between 18 and 26 with a profound ID. RESULTS: At this point, many material, informative, cognitive and emotional needs of young adults and their parents are not met. Obstacles, mainly organisational, persist and result in a particularly difficult transition to adulthood experience. CONCLUSION: By knowing the specific needs of these families, it is possible to develop and implement solutions tailored to their reality. WHAT THE PAPERS ADDS?: The transition to adulthood is a critical period for families with young adults with an intellectual disability (ID), a reality observed internationally. Current literature on all levels of ID suggests some barriers to transition that lead to negative impacts on both parents and young adults with ID. However, presently, very little research exists on the reality of families of young adults with profound ID and factors influencing transition to adult life. Most of studies target people with mild to moderate ID. Considering the significant disabilities of people with profound ID, it is possible to imagine that their experience of transition will be even more difficult and they will present specific needs. The lack of understanding of these needs makes it difficult to introduce solutions tailored to their reality. The results of this current study suggest that many needs of young adults with profound ID and their parents are not met despite existent transition planning services. Transition to adulthood seems particularly difficult for these families who face many challenges. Parents in this study proposed different obstacles during transition to adulthood that could be improved for creation of future solutions adapted to their reality.

[Infantile acquired brain injury, a personal experience. Demands from the socio-familial point of view]. / Daño cerebral sobrevenido infantil, una experiencia personal. Reclamaciones desde el punto de vista sociofamiliar.

We report on the experience of a family in which the youngest child has acquired brain injury and the struggle undertaken by the family to improve the neurorehabilitation resources in the public health service. The article outlines the main demands, from the socio-familial point of view, as regards the improvement of neurological rehabilitation and the resources needed to deliver it.

TITLE: Daño cerebral sobrevenido infantil, una experiencia personal. Reclamaciones desde el punto de vista sociofamiliar.Se describe la experiencia de una familia en la que el hijo menor tiene daño cerebral sobrevenido y la lucha emprendida por la familia para mejorar los recursos neurorrehabilitadores de la sanidad publica. Se recogen las principales reclamaciones, desde el punto de vista sociofamiliar, en cuanto a la mejora en la atencion neurorrehabilitadora y los recursos necesarios.

Human resources for health (and rehabilitation): Six Rehab-Workforce Challenges for the century.

BACKGROUND: People with disabilities face challenges accessing basic rehabilitation health care. In 2006, the United Nations Convention on the Rights of Persons with Disabilities (CRPD) outlined the global necessity to meet the rehabilitation needs of people with disabilities, but this goal is often challenged by the undersupply and inequitable distribution of rehabilitation workers. While the aggregate study and monitoring of the physical rehabilitation workforce has been mostly ignored by researchers or policy-makers, this paper aims to present the 'challenges and opportunities' for guiding further long-term research and policies on developing the relatively neglected, highly heterogeneous physical rehabilitation workforce. METHODS: The challenges were identified through a two-phased investigation. Phase 1: critical review of the rehabilitation workforce literature, organized by the availability, accessibility, acceptability and quality (AAAQ) framework. Phase 2: integrate reviewed data into a SWOT framework to identify the strengths and opportunities to be maximized and the weaknesses and threats to be overcome. RESULTS: The critical review and SWOT analysis have identified the following global situation: (i) needs-based shortages and lack of access to rehabilitation workers, particularly in lower income countries and in rural/remote areas; (ii) deficiencies in the data sources and monitoring structures; and (iii) few exemplary innovations, of both national and international scope, that may help reduce supply-side shortages in underserved areas. DISCUSSION: Based on the results, we have prioritized the following 'Six Rehab-Workforce Challenges': (1) monitoring supply requirements: accounting for rehabilitation needs and demand; (2) supply data sources: the need for structural improvements; (3) ensuring the study of a whole rehabilitation workforce (i.e. not focused on single professions), including across service levels; (4) staffing underserved locations: the rising of education, attractiveness and tele-service; (5) adapt policy options to different contexts (e.g. rural vs urban), even within a country; and (6) develop international solutions, within an interdependent world. CONCLUSIONS: Concrete examples of feasible local, global and research action toward meeting the Six Rehab-Workforce Challenges are provided. Altogether, these may help advance a policy and research agenda for ensuring that an adequate rehabilitation workforce can meet the current and future rehabilitation health needs.

Providers Offer Ailing Prisoners A Helping Hand.

The aging of the country's prison population is bringing higher rates of disabling conditions, with many needing long term/post-acute care services.

Enhancing quality of prosthetic services with process and outcome information.

BACKGROUND: Prosthetic clinics in the United States must attain accreditation in order to receive reimbursement from Medicare. The accreditation process requires clinics to establish and implement performance management plans and quality improvement activities. This report describes the experience of seven prosthetic clinics in collecting patient-reported outcome data and using it to improve quality of services. OBJECTIVES: To describe the experience of prosthetic clinics implementing outcome monitoring and quality improvement activities as part of routine patient care. STUDY DESIGN: Qualitative, ethnographic design. METHODS: Clinics incorporated the Orthotics Prosthetics Users' Survey into routine care for patients aged 18 years and older who received a new lower limb prosthesis or socket. Orthotics Prosthetics Users' Survey measures lower extremity functional status, quality of life, and satisfaction with device and services. Clinics selected Orthotics Prosthetics Users' Survey-derived indicators on which to implement quality improvement action plans. RESULTS: Seven clinics participated, but only three were able to sustain data collection. Two clinics initiated quality improvement activities focused on improving declining satisfaction or functional scores. CONCLUSIONS: Quality improvement activities based on patient-reported outcomes require a high degree of organizational commitment and support. External facilitation can support clinics' quality improvement activities. Clinical relevance This project illustrates the challenges of sustaining quality improvement activities using patient-reported outcome data in prosthetic clinics.

Improving Disability Care in Countries of the Bolivarian Alliance for the Peoples of Our America.

Persons with disabilities constitute one of the most vulnerable groups in every society; their identification, assessment and care present a major challenge. In 2001-2003, Cuba conducted the first comprehensive national study of persons with disabilities in the Americas. In 2007-2010, the study was replicated in Bolivia, Ecuador, Nicaragua, Saint Vincent and the Grenadines, and Venezuela, at their governments' request. Study results have enabled implementation of strategies with substancial impact on human health in these countries. In response to it, more than a million medical consultations were provided by professionals whose specialties are lacking in the participating countries, including 139,772 clinical genetic consultations. Once each country's needs were identified, Cuba provided technical assistance with equipment supplied by Venezuela. The study led to development of public policies and programs for disability prevention and care of disabled persons in Bolivia, Ecuador, Nicaragua and Venezuela, and the opening of the National Medical Genetics Center and orthotic and prosthetic laboratories in Venezuela, and rehabilitation centers in Bolivia. KEYWORDS Disability, epidemiology, health services research, needs assessment, human resources, workforce, Bolivia, Cuba, Ecuador, Nicaragua, Saint Vincent and the Grenadines, Venezuela.

Organising healthcare services for persons with an intellectual disability.

BACKGROUND: When compared to the general population, persons with an intellectual disability have lower life expectancy, higher morbidity, and more difficulty finding and obtaining healthcare. Organisational interventions are used to reconfigure the structure or delivery of healthcare services. This is the first update of the original review. OBJECTIVES: To assess the effects of organisational interventions of healthcare services for the mental and physical health problems of persons with an intellectual disability. SEARCH METHODS: For this update we searched CENTRAL, MEDLINE, EMBASE, CINAHL and other databases, from April 2006 to 4 September 2015. We checked reference lists of included studies and consulted experts in the field. SELECTION CRITERIA: Randomised controlled trials of organisational interventions of healthcare services aimed at improving care of mental and physical health problems of adult persons with an intellectual disability. DATA COLLECTION AND ANALYSIS: We employed standard methodological procedures as outlined in the Cochrane Handbook of Systematic Reviews of Interventions, in addition to specific guidance from the Cochrane Effective Practice and Organisation of Care (EPOC) Group. MAIN RESULTS: We identified one new trial from the updated searches.Seven trials (347 participants) met the selection criteria. The interventions varied but had common components: interventions that increased the intensity and frequency of service delivery (4 trials, 200 participants), community-based specialist behaviour therapy (1 trial, 63 participants), and outreach treatment (1 trial, 50 participants). Another trial compared two active arms (traditional counselling and integrated intervention for bereavement, 34 participants).The included studies investigated interventions dealing with the mental health problems of persons with an intellectual disability; none focused on physical health problems. Four studies assessed the effect of organisational interventions on behavioural problems for persons with an intellectual disability, three assessed care giver burden, and three assessed the costs associated with the interventions. None of the included studies reported data on the effect of organisational interventions on adverse events. Most studies were assessed as having low risk of bias.It is uncertain whether interventions that increase the frequency and intensity of delivery or outreach treatment decrease behavioural problems for persons with an intellectual disability (two and one trials respectively, very low certainty evidence). Behavioural problems were slightly decreased by community-based specialist behavioural therapy (one trial, low certainty evidence). Increasing the frequency and intensity of service delivery probably makes little or no difference to care giver burden (MD 0.03, 95% CI -3.48 to 3.54, two trials, moderate certainty evidence). It is uncertain whether outreach treatment makes any difference for care giver burden (one trial, very low certainty evidence). There was very limited evidence regarding costs, with low to very low certainty evidence for the different interventions. AUTHORS' CONCLUSIONS: There is very limited evidence on the organisation of healthcare services for persons with an intellectual disability. There are currently no well-designed studies focusing on organising the health services of persons with an intellectual disability and concurrent physical problems. There are very few studies of organisational interventions targeting mental health needs and the results of those that were found need corroboration. There is an urgent need for high-quality health services research to identify optimal health services for persons with an intellectual disability and concurrent physical problem.