Quality Of Health Care For People Research Articles

A perspective on policies and practices regarding access to and quality of healthcare for people with intellectual disabilities in Zambia

AbstractZambia is a low‐income country on the African continent which is facing a high rate of health inequalities. Although the government has made efforts to reform the organization of healthcare to reduce inequalities, the practical implementation of disability policies remains challenging. Specifically, people with intellectual disabilities (ID) face barriers to accessing healthcare services in Zambia, due to geographic or socioeconomic factors, stigma, and limited specialized health professionals. This perspective paper provides an overview of the current policy and organization on the healthcare provision for people with ID. It presents the key challenges people with ID face in Zambia to access quality healthcare services. Additionally, we provide examples of good practices with a community approach. We discuss policy implementation of disability rights, including access to healthcare, the impact of raising knowledge and awareness about people with ID, and how gathering contextual information through research can help to reduce inequalities. Community and culturally sensitive approaches to improve access to healthcare for people with ID in Zambia are crucial. We call for close collaboration between the fields of research and practice to combine expertise and strengthen the impact and possibilities of scaling good practices within Zambia.

Indonesian nurses' awareness and application of reasonable adjustments when caring for people with intellectual disability and/or autism.

This study aimed to understand Indonesian nurses' familiarity with the concept of reasonable adjustments, and the frequency of its application within their practice. People with intellectual disability and/or autism are exposed to significant barriers when accessing healthcare and have poorer health outcomes than those without developmental disabilities. Reasonable adjustments can improve accessibility and quality of healthcare for people with disabilities and involves adapting practices and environments to promote equitable healthcare. There is a scarcity of literature focused on the application of reasonable adjustments in the Indonesian nursing context. A greater understanding of the application of reasonable adjustments in this context can help inform nursing curricula and policy. A cross-sectional, descriptive survey -was undertaken and is reported in accordance with the Strengthening the Reporting of Evaluations and Non-randomised Designs. Following descriptive analysis, bivariate analyses were undertaken between key demographic, workplace, and self-reported capability variables, and familiarity and implementation of reasonable adjustments. The majority of respondents were not familiar with the concept of reasonable adjustments and self-reported sometimes applying it within their practice. Higher levels of educational and clinical exposure to intellectual disability and/or autism, and self-capability variables, were significantly associated with familiarity with reasonable adjustments and their application. An increase in nursing curricula focused on caring for people with intellectual disability and/or autism, including content focused on applying reasonable adjustments, is indicated. Given that, internationally, people with intellectual disability and/or autism have disproportionately negative health outcomes and experiences, findings highlighting gaps in understanding and application of reasonable adjustments of Indonesian nurses have substantial implications for nursing policy and curriculum.

PD-Buddy: A Feasibility Study of Mobile Health to Support the Management of Peritoneal Dialysis.

People experiencing peritoneal dialysis (PD) are expected to document considerable clinical information at home, yet timely and accurate data collection, and sharing of data with their health team is associated with challenges. Mobile health technologies present an opportunity to bridge home and hospital care. PD-Buddy is a novel smartphone and web-based platform which guides people experiencing PD through their dialysis treatment. The platform was tested in a feasibility study with (n=33) people attending a Peritoneal Dialysis Clinic in Brisbane, Australia. The study evaluated adoption and satisfaction of the system among users (patients and clinicians), as well as infection rates. Findings indicate PD-Buddy to be a user-friendly solution that could expand access to, and improve, the quality of healthcare for people experiencing PD. It could reduce burdens for regional and remote populations, such as travelling to receive specialty care, and improve monitoring, timeliness, and communications with and within their care teams.

UK Haemoglobin Disorders Peer Review: A Quality Standards-based review programme for sickle cell disease and thalassaemia.

We evaluated the impact of peer reviews in driving improvement in healthcare quality for people with haemoglobinopathy in the United Kingdom. We analysed compliance to four Quality Standards (QS)-based peer reviews from 2010 to 2020 to evaluate its impact in driving healthcare quality. Seventeen paediatric and 29 adult haemoglobinopathy centres were reviewed in 2010/11 and 2012/13 respectively; 33 paediatric and 33 adult centres were reviewed in 2014/16, and 32 paediatric and 32 adult centres were reviewed in 2018/2020. Compliance with QS and participant feedback were analysed to assess the impact of peer review programmes to drive improvement in quality of care. We noted that haemoglobinopathy centres significantly improved their compliance to QS between the first two review programmes, but not in the final review programme. In comparison to other disease-group reviews, the haemoglobinopathy departments were less able to address critical peer review recommendations in their own institutions. The peer review programme was unable to drive sustained improvement in healthcare quality, underscoring the need for sustained development and support for haemoglobinopathy services in the National Health Service. Further work is needed to understand why disparities exist among peer review-driven improvement initiatives within different disease groups.

Capturing the complexity of healthcare for people with Down syndrome in quality indicators - a Delphi study involving healthcare professionals and patient organisations

BackgroundInsight into quality of healthcare for people with Down Syndrome (DS) is limited. Quality indicators (QIs) can provide this insight. This study aims to find consensus among participants regarding QIs for healthcare for people with DS.MethodsWe conducted a four-round Delphi study, in which 33 healthcare professionals involved in healthcare for people with DS and two patient organisations’ representatives in the Netherlands participated. Median and 75-percentiles were used to determine consensus among the answers on 5-point Likert-scales. In each round, participants received an overview of participants’ answers from the previous round.ResultsParticipants agreed (consensus was achieved) that a QI-set should provide insight into available healthcare, enable healthcare improvements, and cover a large diversity of quality domains and healthcare disciplines. However, the number of QIs in the set should be limited in order to prevent registration burden. Participants were concerned that QIs would make quality information about individual healthcare professionals publicly available, which would induce judgement of healthcare professionals and harm quality, instead of improving it.ConclusionsWe unravelled the complexity of capturing healthcare for people with DS in a QI-set. Patients’ rights to relevant information have to be carefully balanced against providers’ entitlement to a safe environment in which they can learn and improve. A QI-set should be tailored to different healthcare disciplines and information systems, and measurement instruments should be suitable for collecting information from people with DS. Results from this study and two preceding studies, will form the basis for the further development of a QI-set.

Epilepsy-related knowledge and attitudes toward people with epilepsy among hospital staff in Van City, Turkey

BackgroundThe level of knowledge and exhibited attitudes of hospital staff may affect the quality of healthcare for people with epilepsy, and they may have a direct impact on epilepsy stigma in the general population. AimThe aim of this study was to evaluate knowledge and attitudes of hospital staff regarding epilepsy at a hospital located in the eastern side of Turkey. MethodThis study was conducted with 210 hospital staff working at Van Regional Educational and Training Hospital in Van, Turkey. Data regarding the demographics and familiarity with epilepsy were obtained. Epilepsy knowledge scale and epilepsy attitude scale were used to evaluate the level of knowledge and attitudes regarding epilepsy, respectively. ResultsThe mean score of epilepsy knowledge scale was 11.3 ± 3.8 and the mean score of epilepsy attitude scale was 58.2 ± 6.3. The level of knowledge was positively associated with being familiar with epilepsy. Positive attitudes regarding epilepsy correlated with higher level of knowledge (p < 0.001). Negative attitude regarding epilepsy was particularly present toward relationship and marriage involving people with epilepsy. ConclusionOur study results showed that hospital staff had a moderate level of knowledge regarding epilepsy. The study sample generally displayed a positive attitude, but not in the items related to relationship and marriage involving people with epilepsy. More knowledge was associated with a more positive attitude. Education programs can help to increase knowledge, and thus to improve attitudes regarding epilepsy.

Healthcare quality for people with Down Syndrome: the patient perspective

Introduction: Down Syndrome (DS) is the most prevalent chromosomal anomaly among people with intellectual disability. Because DS is associated with a large variety of chronic comorbidities, people with DS need lifelong healthcare with many different professionals involved. In the past decades, many DS-specialized healthcare initiatives have been introduced. However, little is known about their quality, which hampers monitoring and improvement, and reduces transparency for people with DS and their parents. Quality indicators (QIs) can provide insight into healthcare quality, unhide opportunities for improvement, and increase transparency. Our study aims to identify starting points for QIs by exploring how qualitative good healthcare contributes to a good life quality of people with DS, thereby answering the question how healthcare quality for this group with special healthcare needs can be measured best. Healthcare quality is increasingly described in terms of outcomes adding value for patients. Our current study focuses on adding value for patients by exploring the patient perspective on healthcare quality for people with DS. This is done by involving people with DS and their parents/family members. Their professional carers (in case of residential care) will be involved later, because they also play an important role in the lives of people with DS. Methods: The study has a qualitative design including semi-structured individual interviews with people with DS (n=18) and parents (n=15). Topics discussed during the interviews included experiences with received healthcare, influence on life quality and healthcare improvement. Results: According to interviewed people with DS (^) and parents (*): Healthcare quality is: Patient-centered care: Optimal functioning of the person with DS is central*; Taking context and life stage of the person with DS into account^*; Respectful doctor-patient communication adapted to the abilities of the person with DS^*. Effective, efficient and accessible care: Care providers with DS-expertise nearby^*; Information about available care*. Multidisciplinary care including actors outside healthcare (e.g. school, work) and good coordination and integration*: Information sharing (between providers); Synchronized planning of consultations. Healthcare largely contributes to wellbeing^*. In the Netherlands, healthcare to people with DS is quite good, although transition from paediatric to adult care needs improvements^*. Parents experience more problems with finding appropriate developmental/social support*. Discussion: To our knowledge, this is the first research project developing QIs for DS healthcare, and the first involving patients and their carers. By focusing on the patient perspective we expect to develop QIs which enable healthcare improvements that are truly relevant to people with DS, add value to their lives, and enhance efficiency within the healthcare system. Conclusion: The issues mentioned by people with DS and parents (above) will be used as starting point for the development of QIs measuring healthcare quality for people with DS. Lessons learned: Involving people with DS by interviewing them is challenging but worthwhile. Limitations: Interviewing people with DS may influence the validity of our findings. However, we minimised this influence by adapting the interviews to the abilities of the interviewees. Suggestions for future research: A next step should be to involve care providers.

Nursing guaranteeing healthcare quality for people and families in public health services: A view from Latin America

Nursing guaranteeing healthcare quality for people and families in public health services: A view from Latin America

Making quality improvement programs more effective.

In the past 25 years, and as recent as 2011, all external evaluations of the Quality Improvement Organization (QIO) Program have found its impact to be small or difficult to discern. The QIO program costs about $200 million on average to administer each year to improve quality of healthcare for people of 65 years or older. The program was created to address questionable quality of care. QIOs review how care is provided based on performance measures. The paper aims to discuss these issues. In 2012, the author supported the production of quarterly reports and reviewed internal monitoring and evaluation protocols of the program. The task also required reviewing all previous program evaluations. The task involved many conversations about the complexities of the program, why impact is difficult to discern and possible ways for eventual improvement. Process flow charts were created to simulate the data life cycle and discrete event models were created based on the sequence of data collection and reporting to identify gaps in data flow. The internal evaluation uncovered data gaps within the program. The need for a system of specification rules for data conceptualization, collection, distribution, discovery, analysis and repurposing is clear. There were data inconsistencies and difficulty of integrating data from one instance of measurement to the next. The lack of good and reliable data makes it difficult to discern true impact. The prescription is for a formal data policy or data governance structure to integrate and document all aspects of the data life cycle. The specification rules for governance are exemplified by the Data Documentation Initiative and the requirements published by the Data Governance Institute. The elements are all in place for a solid foundation of the data governance structure. These recommendations will increase the value of program data. The model specifies which agency units must be included in the governance authority and the data team. The model prescribes in detail a data governance model to address gaps in the life cycle. These prescriptive measures will allow the program to integrate all of its data. Without this formal data governance structure, the QIO program will be undetermined by the persistent lack of good data for monitoring and evaluation.

Elevation discrepancies between MMPI-2 clinical and MMPI-2-RF restructured clinical (RC) scales in people with seizure disorders

PurposePeople with seizure disorders experience elevated rates of psychopathology, often undiagnosed and untreated. Accurate diagnosis of psychopathology remains an important goal of quality health care for people with seizure disorders. One of the most widely used dimensional measures of psychopathology is the Minnesota Multiphasic Personality Inventory—Second Edition (MMPI-2). Research in heterogeneous mental health samples suggests that the 2008 revision of this measure, the Minnesota Multiphasic Personality Inventory—Second Edition—Restructured Form (MMPI-2-RF), offers better construct fidelity and more cost-effective administration. This study seeks to extend research on MMPI-2-RF scale elevations to a sample of people with seizure disorders. MethodsIn a consecutive, heterogeneous sample of people with seizure disorders, MMPI-2 and MMPI-2-RF scores were compared in terms of categorical classification agreement (clinically elevated versus not clinically elevated). Scores were also compared in terms of variance attributable to diagnosis-specific items, general demoralization, subtle items, social desirability, and demographic factors. Key findingsScores on MMPI-2 and MMPI-2-RF provided a statistically significant level of agreement between corresponding clinical diagnostic scales ranging from 68% to 84%. Most classification disagreement was attributable to MMPI-2 clinical scale elevations when MMPI-2-RF scales were not elevated. Regression analysis supported the interpretation that general demoralization, subtle items, social desirability, and demographic factors led to MMPI-2 clinical scale elevations. SignificanceThe results provide evidence that in the context of strong psychopathology classification agreement, the MMPI-2-RF restructured clinical scales provide better construct fidelity compared with the more trait heterogeneous MMPI-2 clinical scales. These results should encourage clinicians to use the MMPI-2 Restructured Form (MMPI-2-RF) for improved psychopathology assessment compared with the MMPI-2 in patients with seizure disorders.

Limitations in the functioning of Village Health and Sanitation Committees in a North Western State in India

Constitution of Village Health and Sanitation Committees (VHSC) is one of the special initiatives under the National Rural Health Mission (NRHM) to improve the availability and access to quality health care for people residing in rural areas through increased ownership and power to local people. Such committees are functional throughout the country. The main objective of the study was to assess whether VHSCs in the study area have been formed and function according to given NRHM guidelines and if the committee members were aware of various aspects under VHSC. This was a cross sectional study done with 17 VHSCs from one block of a district in a North Western state in India. The study district and block were purposively selected while 25% VHSCs (17 out of 66 VHSC in the block) were randomly selected from the block. The respondents of the study included all the members of the VHSCs. In total, 94 members from the selected VHSCs participated in the study. Primary data was collected with the help of an instrument while the secondary data was collected by observation records of ANMs; documents from district and block level NRHM branches; maintenance registers and other records maintained at the VHSC. The study found that composition of all the 17 VHSCs did not meet the NRHM guidelines and lacked participation from school teachers and ASHA workers. There was very low awareness among the members about functions of the committee. The study found low knowledge level related to activities and processes carried out by the VHSCs; areas where Village Health Fund (VHF) could be utilized. None of the VHSCs selected under study conducted any awareness campaign; did not prepare any Village Health Plan and did not do any budgeting for the future year. The monitoring, inspection and evaluation part of the VHSCs was also very weak. The study indicates many problems and gaps in composition, formation and functioning of VHSC when compared with the actual guidelines laid down under NRHM. The problems relating to selection of members, their training, supportive supervision, proper reporting and responsive feedback mechanism can only be improved with a strong will and action of Panchayat Raj Institution (PRI) along with the health department and other stakeholders.

Design and Implementation of an Ontology-Based Clinical Reminder System to Support Chronic Disease Healthcare

Improving quality of healthcare for people with chronic conditions requires informed and knowledgeable healthcare providers and patients. Decision support and clinical information system are two of the main components to support improving chronic care. In this paper, we describe an ontology-based information and knowledge management framework that is important for chronic disease care management. Ontology-based knowledge acquisition and modeling based on knowledge engineering approach provides an effective mechanism in capturing expert opinion in form of clinical practice guidelines. The framework focuses on building of healthcare ontology and clinical reminder system that link clinical guideline knowledge with patient registries to support evidenced-based healthcare. We describe implementation and approaches in integrating clinical reminder services to existing healthcare provider environment by focusing on augmenting decision making and improving quality of patient care services.

Healthcare apartheid and quality of life for people with disabilities

The sizzling debate on healthcare reform has very little to do with me as a person with a significant physical disability, yet it fuels the fire in my belly. I am well insured because I work and supposedly have access to some of the best healthcare in the world, yet I continue to receive, and suffer from, some services that are second-class for several reasons. Our current system is best prepared to deal with acute conditions; those of us with multiple chronic conditions are mostly left on our own to manage a bevy of specialists, each with their restricted, though extensive, knowledge and limitations in their practice. Trying to find a generalist who has knowledge of wellness in the context of disability is like trying to find a tofu burger at a Texas barbecue. There is nothing in the current system of medical education that prepares physicians on how to keep people like me well. As a result, when I go to see my internist with concerns about a seemingly common problem, for example, stomach pain and fatigue, it’s just so easy for her to say ‘‘That’s to be expected with such an extensive disability.’’ Aside from being an easy out, disability can mask possibly serious symptoms. The system lacks incentives to look deeper into a seemingly simple but potentially complex problem and consult with my other specialists to rule out, identify, and treat. Another fundamental reason for the second-class services that are available to me is the entrenched resistance of the medical industry to compliance with the spirit of the Americans with Disabilities Act. Yes, you will find all the obligatory ramps and parking spaces, but where can you find an elevating exam table or a platform scale? Much has been written about how the absence of accessible equipment limits quality healthcare for people with disabilities, especially women [1, 2]. There is no mystery about why I haven’t had a mammogram in more than 10 years—I simply can’t fit into the machines! I hardly have a right to complain, though, when I look at the true victims of healthcare apartheid in our country— people who must rely on Medicaid or charity care. Although providers of healthcare to those who live below the poverty level try desperately to meet the needs of their patients, the demand is overwhelming. At least I don’t have to spend a whole day in a waiting room to see a doctor, or wait 3 months to get an appointment for a pelvic ultrasound and then another three to get the results. The problem of limited choice of doctors is paramount with Medicaid. Only a little more than half of physicians (53%) reported their practices were accepting all or most new Medicaid patients. Fewer than six in 10 US physicians (59.1%) reported providing charity care to patients in financial need, spending an average of 9.4 h/month (4% of their time) delivering free or reduced-cost care [3]. And the opponents of health insurance reform complain that it will limit their choice of doctors. What stokes the fire in my belly the most, however, is the fact that in order to receive even healthcare services that are sub-par, you are forced to stay poor. This is one of the major reasons for the unconscionably low rates of employment among women with disabilities—only 30.7% in 2003 [4]. They are uninsurable in the private sector so they cannot afford to work and risk losing the only care (government funded) they can get for their disabling This is an invited Patient Voice commentary.

Editorial

Editorial

The Care System Assessment Project: Values-based Health Care Planning and Delivery

This is a commentary on the Care System Assessment (CSA) Project, utilizing a values-based health care framework to review the process undertaken by the three participating Ryan White CARE Act grantee sites. The CSA Project participants' dedication to the well-being of their communities reinforced the inclusion, active involvement, and participation of all stakeholders. That key community members had previously chosen not to participate in planning efforts or seek care because of stigma and fear in new immigrant populations was noted by all three sites as a major issue to address in their future planning. The sites selected for the CSA Project demonstrated that community-based Planning Councils, engaged with representatives from the target population, can assess, identify, and provide effective interventions sensitized to the needs of underserved, resilient clients. They also demonstrated that meeting these needs to enhance the common good of the community may require an increased respect for diversity. The CSA Project is one leadership exemplar of providers and clients coming together to find the common good of quality health care for people living with HIV and AIDS These grantee providers and their clients are intimately engaged in this paradigm shift and are taking the lead to redefine the type of health and support services they must provide within the context of the U.S. health care system.

Managed care and a process of integration in health care sector: A case study from Poland

The aim of the paper is to explore a causal nexus between contract type (financing rules and scale of responsibilities) and tendency towards integration between Polish health care providers. For more than 40 years Polish health care sector structures were fully integrated. The law introduced in 1991 initiated development of a system of contracts between public payer and the independent medical services’ providers. After a few years, new legislation enabled much faster movement from an integrated model of provision towards separating a public ‘third party payer’ from health services providers. After reforms in 1999, in the context of poor enforcement mechanisms, unit financing rules proved to be one of the weaknesses of the Polish health care system. By enhancing a structure-disintegrating process, cost-per-case contracts destroyed those of organizational and professional networks (both formal and informal ones) which could guarantee coordinated, continuous and high quality health care for people. On the other hand, in 2002, 2 of the 17 Sickness Funds implemented contractual arrangements typical for the managed care system. The primary care providers who realized pilot experiment, took on responsibility for coordinating treatment of the enrolled patients and for management of financial resources assigned for the health care packages broader than usual in Poland. Capitation payment was the major technique of financing those providers . Using a case study descriptive analysis, it is argued here that capitation prospective payment for wide packages of health care may encourage spontaneous (bottom-up) integration between primary and secondary care providers.

Improving Quality of Health Care for Dementia: A Consumer Approach

ABSTRACT The growing aging population and concerns about quality health care for people with dementia and other chronic illnesses have stimulated numerous efforts targeting health care providers. The “Partnering with Your Doctor” program is the first to explore the efficacy of a consumer “self-management” approach to improving dementia health care. The program, consisting of a workshop and accompanying informational booklet available in English and Spanish, was conducted across California. Evaluation results indicated that participants were satisfied with the program, learned new actions to take before and during doctor visits, and experienced increased confidence in their ability to work effectively with doctors to improve the quality of care received.