The attendees’ view of quality in community-based day centre services for people with psychiatric disabilities

Abstract

Background/aims: Community-based day centres in Sweden are well-established arenas for psychiatric rehabilitation, but little is known of the attendees’ perception of the quality of the service provided. The aim of the study was thus to describe and investigate the quality of the services in community-based day centre for people with psychiatric disabilities.

Methods: A sample of 218 attendees in 14 community-based day centre services in Sweden completed the Quality in Psychiatric Care – Daily Activities (QPC-DA).

Results: The results showed that people with psychiatric disabilities perceived the quality of community-based day centre services as high. Most notably, quality of service was rated higher by those with lower educational level, had waited shorter time to attend the centre, and had better mental and physical health. However, particularly aspects of a secluded environment and participation (information) may be areas with potential for improvement.

Conclusion/significance: From an occupational science perspective, the results adhere to the importance of occupational balance, with periods of rest/privacy during the time at the centre.     

Nutrition knowledge and influence on diet in the carer–client relationship in residential care settings for people with intellectual disabilities

People with intellectual disabilities generally have poorer health outcomes compared with those who do not, including outcomes related to nutrition-related non-communicable diseases. Carers support people with intellectual disabilities in many aspects including habitual shopping and preparation of food, but their own nutrition knowledge and the influence this may have on dietary intakes of clients is unknown. We explored the nutrition knowledge of carers of people with intellectual disabilities in residential care settings, their dietary habits and their influence on clients' food shopping and preparation and therefore the diet consumed by their clients. Ninety-seven carers belonging to a large independent care sector organisation specialising in the care of people with an intellectual disability completed a validated general nutrition knowledge and behaviour questionnaire. Seventeen carers from the residential care settings were interviewed to contextualise practice. Knowledge about key dietary recommendations scored highly. Carers who had more work experience were found to have higher scores in ‘making everyday food choices’ (p = 0.034). Daily consumption of fruit and vegetables (at least one portion per day) was observed (for fruit by 46% of the carers and for vegetables by 60% of the carers), whilst most carers reported avoiding consuming full-fat dairy products, sugary foods and fried foods. The concept of a healthy diet; typical dietary habits of clients; role in food acquisition; and training in nutrition emerged as themes from the interviews. Carers discussed various topics including the importance of a balanced diet, cooking fresh foods and control of food portion sizes for clients relative to the care philosophy of a client-centred approach, which encapsulates client autonomy. Gaps in knowledge around specific nutrients, making healthy choices and cooking skills remain. Carers have an influence on clients' dietary choices; they are able to provide healthy meals and share good dietary habits with clients. Further training in nutrition is recommended for impact on clients' health.     

Home‐care programmes for older adults with disabilities in Canada: How can we assess the adequacy of services provided compared with the needs of users?

The need for home care will probably continue to increase over the next decade as one response to innovative health practices designed to help people receive services at home instead of in institutions. However, there are no data for determining whether home-care programmes can meet user needs. The objectives of the present study were to describe the functional autonomy profile of the users of public home-care programmes in Québec, Canada, and to compare the level of adequacy between required and provided services in public home-care programmes for older adults with disabilities. This study was based on a cross-sectional design from September to December 2002. The population studied consisted of all users of public home-care services in one administrative region in the province of Québec over this 3-month period. Each user was assessed with the Functional Autonomy Measurement System (SMAF) and then classified into one of the 14 Iso-SMAF profiles. The total number of hours of care required was determined using the median number of hours of nursing care, personal care and support services associated with each profile. For the sake of comparison with the services required, the services provided were calculated from an administrative databank that included statistics of the time spent by health professionals on caring for home-care users. The ratio of hours of services provided to the number of hours of services required by home-care users highlights a discrepancy between the services provided and user needs. The results of this study show the feasibility of describing users of public home-care programmes and the adequacy of services provided in relation to user needs. Based on these results, public home-care programmes in the province of Québec appear to be under-funded.     

Uncertainty in the school playground: shifting rationalities and teachers’ sense-making in the management of risks for children with disabilities

Recent theoretical debates highlight the competing risk logics and varying rationalities mobilised in response to dangers and approaches to risk management. Yet the concept of uncertainty, and how it informs perceived risks, is relatively less well understood. Debates of this kind are illuminated in contexts where risks are managed as part of everyday practice. The school setting provides an example of a context in which risks are continuously negotiated amidst dominant protectionist concerns about children’s well-being and safety. Such protectionist concerns are particularly pronounced for children with disabilities, as assumptions about limited capabilities complicate and structure the everyday play experiences for children. Drawing on findings from the Sydney Playground Project, in this article we aim to unpack the felt discomfort experienced by school staff in their responses to uncertain moments in children’s play. We report qualitative data collected from two schools between October 2014 and September 2015 using video observations of children’s play and teachers’ responses to an online Tolerance of Risk in Play Scale. Our findings point to the competing logics and forms of sense-making operationalised by teachers to manage the unknown. Our analysis explored the ways in which risk strategies were (re)framed by school staff and such reframing explained their action (or inaction) in the playground and how these were underpinned by concerns about professional accountabilities. Their responses located risks within the child with disabilities, rather than the play activity itself. Another approach to uncertainty can be achieved by mobilising a discourse of trust in which ‘letting-go’ offers children opportunities to reflexively engage in risk-taking.     

Measuring health-related quality of life in Hungarian children with heart disease: psychometric properties of the Hungarian version of the Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales and the Cardiac Module

Objectives

The aim of the study was to investigate the psychometric properties of the Hungarian version of the Pediatric Quality of Life Inventory? (PedsQL?) Generic Core Scales and Cardiac Module.

Methods

The PedsQL? 4.0 Generic Core Scales and the PedsQL? 3.0 Cardiac Module was administered to 254 caregivers of children (aged 2-18 years) and to 195 children (aged 5-18 years) at a pediatric cardiology outpatient unit. A postal survey on a demographically group-matched sample of the general population with 525 caregivers of children (aged 2-18 years) and 373 children (aged 5-18 years) was conducted with the PedsQL? 4.0 Generic Core Scale. Responses were described, compared over subgroups of subjects, and were used to assess practical utility, distributional coverage, construct validity, internal consistency, and inter-reporter agreement of the instrument.

Results

The moderate scale-level mean percentage of missing item responses (range 1.8-2.3%) supported the feasibility of the Generic Core Scales for general Hungarian children. Minimal to moderate ceiling effects and no floor effects were found on the Generic Core Scales. We observed stronger ceiling than floor effects in the Cardiac Module. Most of the scales showed satisfactory reliability with Cronbach's α estimates exceeding 0.70. Generally, moderate to good agreement was found between self- and parent proxy-reports in the patient and in the comparison group (intraclass correlation coefficient range 0.52-0.77), but remarkably low agreement in the perceived physical appearance subscale in the age group 5-7 years (0.18) and for the treatment II scale (problems on taking heart medicine) scale of the Cardiac Module in children aged 8-12 years (0.39). Assessing the construct validity of the questionnaires, statistically significant difference was found between the patient group and the comparison group only in the Physical Functioning Scale scores (p = 0.003) of the child self-report component, and in Physical (p = 0.022), Emotional, (p = 0.017), Psychosocial Summary (p = 0.019) scores and in the total HRQoL (health-related quality of life) scale score (p = 0.034) for parent proxy-report.

Conclusion

The findings generally support the feasibility, reliability and validity of the Hungarian translation of the PedsQL? 4.0 Generic Core Scales and the PedsQL? 3.0 Cardiac Module in Hungarian children with heart disease.     

Some psychometric properties of the Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales (PedsQL<Superscript>TM</Superscript>) in the general Serbian population

Purpose  

The aim of this study was to evaluate the general measurement properties of the Serbian version of the Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales (PedsQL^TM) self-report versions for children and adolescents (8–18 years).     

Health-related Quality of Life of Thai children with HIV infection: a comparison of the Thai Quality of Life in Children (ThQLC) with the Pediatric Quality of Life Inventory™ version 4.0 (PedsQL™ 4.0) Generic Core Scales

Purpose  

The purpose of this study was to evaluate the reliability and validity of the Thai Quality of Life in Children (ThQLC) and compare it with the Pediatric Quality of Life Inventory (PedsQL™ 4.0) in a sample of children receiving long-term HIV care in Thailand.     

Validity,reliability and responsiveness of the "Schedule for the Evaluation of Individual Quality of Life – Direct Weighting" (SEIQoL-DW) in congenital heart disease

Background  

The 'schedule for the Evaluation of Individual Quality of Life - Direct Weighting' (SEIQoL-DW) is an instrument developed to measure individual quality of life. Although this instrument has been used in numerous studies, data on validity and reliability are sparse. This study aimed to examine aspects of validity, reliability and responsiveness of the SEIQoL-DW on data obtained in adults with congenital heart disease, by using the new standards of psychological testing.     

Development of the Integrated Parkinson’s Care Network (IPCN): using co-design to plan collaborative care for people with Parkinson’s disease

Background

Parkinson’s disease (PD) is a progressive neurological illness that impacts various aspects of life. Integration of medical and self-management in a collaborative approach to care is needed to enhance functioning and the quality of life of PD patients. In developing an integrated care program at a tertiary PD clinic, we used a co-design process to gather stakeholder input.

Methods

This is a cross-sectional mixed methods study using surveys and interviews. Patient and caregiver participants from the clinic completed two questionnaires to evaluate perceived receipt of self-management support (Patient Assessment of Care for Chronic Conditions) and activation for managing their health condition (Patient or Caregiver Activation Measure®). A subset of these participants and healthcare providers took part in semi-structured interviews. Survey data were described and tested for relationships between patient characteristics and questionnaire scores using Spearman’s rank-order correlation. Interviews were analyzed using conventional content analysis.

Results

Fifty-seven PD patients and thirty caregivers completed the questionnaires. Thirteen patients, six caregivers, and six healthcare providers were interviewed. 58% of participants were moderately to highly activated to manage their lives with PD. Participants’ perceptions of self-management support varied but was lacking in dimensions of goal-setting and follow-up support/coordination. Qualitative analysis revealed four overarching themes related to experiences of managing PD: activation, self-management support, coordinated care, and access to services.

Conclusions

This first study to explore patient activation in PD found high levels of activation but moderate to low levels of self-management support. The co-design process highlighted important aspects of a more collaborative approach to care.

     

Equity in social care for people with intellectual disabilities? A cross‐sectional study examining the distribution of social care funding across local authorities in England

Many people with intellectual disabilities rely on social care provision, though little research has looked at how access to such provision is distributed nationally. Evidence from children's services suggests that there are large discrepancies between local authorities (LAs) in terms of the resources expended on interventions with children and families, which can be explained by variations linked to geographical location, namely the level of socioeconomic deprivation between LAs, constituting ‘child welfare inequalities’. This study explored relationships between resources allocated to community services for people with intellectual disabilities in England and geographical factors, including deprivation, rurality and political leadership in the LAs where these individuals reside. Data were sourced from publicly available reports of spending of 151 English councils with adult social services responsibilities (CASSRs) for 2013–2014 and from CASSR index of multiple deprivation (IMD) scores and rurality for the same period. We found that more deprived LAs supported more people with intellectual disabilities, per 100,000 of population. We did not find effects for rurality or political party. However, it was not the case that more deprived LAs allocated more funds for expenditure on this group. These findings point to inequities in the distribution of social care resources for people with intellectual disabilities in England, as although more deprived LAs support more people with intellectual disabilities, they do not spend proportionally larger sums of money on this group. We discuss possible explanations for these findings and highlight the need for more research, particularly investigations about allocation of resources within LAs and more detailed explorations of how structural factors such as socioeconomic status of service users effects service access at the local level.     

Health Technology Assessment–Informed Decision Making by the Federal Joint Committee/Institute for Quality and Efficiency in Health Care in Germany and the National Institute for Health and Care Excellence in England: The Role of Budget Impact

ObjectivesThis study aimed to test (official) evaluation criteria including the potential role of budget impact (BI) on health technology assessment (HTA) outcomes published by the Federal Joint Committee (Gemeinsamer Bundesausschuss [GBA]) and the Institute for Quality and Efficiency in Health Care (Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen [IQWiG]) in Germany as well as the National Institute for Health and Care Excellence (NICE) in England.MethodsData were extracted from all publicly available GBA decisions and IQWiG assessments as well as NICE single technology appraisals between January 2011 and June 2018, and information with regard to evaluation criteria used by these agencies was collected. Data were analyzed using logistic regression to estimate the effect of the BI on the HTA outcomes while controlling for criteria used by GBA/IQWiG and NICE.ResultsNICE recommendations are largely driven by the incremental cost-effectiveness ratio and, if applicable, by end-of-life criteria (P < .01). While IQWiG assessments are significantly affected by the availability of randomized controlled trials and patient-relevant endpoints (P < .01), GBA appraisals primarily focus on endpoints (P < .01). The BI correlated with NICE single technology appraisals (inverted-U relationship, P < .1) and IQWiG recommendations (increasing linear relationship, P < .05), but not with GBA decisions (P > .1). Nevertheless, given that IQWiG assessments seem to be more rigorous than GBA appraisals regarding the consideration of evidence-based evaluation criteria, decisions by GBA might be negatively associated with the BI.ConclusionsResults reveal that GBA/IQWiG and NICE follow their official evaluation criteria consistently. After controlling for all significant variables, the BI seems to have an (independent) effect on HTA outcomes as well.     

Linking Individuals with Substance Use Disorders (SUDs) in Primary Care to SUD Treatment: the Recovery Management Checkups–Primary Care (RMC-PC) Pilot Study

Linking individuals in primary care settings with substance use disorders (SUDs) to SUD treatment has proven to be challenging, despite the widespread use of Screening, Brief Intervention, and Referral to Treatment (SBIRT). This paper reports findings from a pilot study that examined the efficacy of the Recovery Management Checkups intervention adapted for primary care settings (RMC-PC), for assertively linking and engaging patients from Federally Qualified Health Centers into SUD treatment. Findings showed that patients in the RMC-PC (n=92) had significantly higher rates of SUD treatment entry and received more days of SUD treatment compared with those who receive the usual SBIRT referral (n=50). Receipt of RMC-PC had both direct and indirect effects, partially mediated through days of SUD treatment, on reducing days of drug use at 6 months post intake. RMC-PC is a promising intervention to address the need for more assertive methods for linking patients in primary care to SUD treatment.     

Is the methodological quality of guidelines declining in the US? Comparison of the quality of US Agency for Health Care Policy and Research (AHCPR) guidelines with those published subsequently

Objective: To determine whether North American guidelines published subsequent to and in the same topic areas as those developed by the US Agency for Health Care Policy and Research (AHCPR) meet the same methodological criteria.

Study design: A guideline appraisal instrument containing 30 criteria was used to evaluate the methodological quality of the AHCPR guidelines, "updates" of the AHCPR guidelines authored by others, and guidelines that referenced or were adapted from the AHCPR guidelines. The frequency with which the criteria appeared in each guideline was compared and an analysis was performed to determine guidelines with two key features of the ACHPR guidelines—multidisciplinary guideline development panels and systematic reviews of the literature. Data were extracted from the guidelines by one investigator and then checked for accuracy by the other.

Results: Fifty two guidelines identified by broad based searches were evaluated. 50% of the criteria were present in every AHCPR guideline. The AHCPR guidelines scored 80% or more on 24 of the 30 criteria compared with 14 for the "updates" and 11 for those that referenced/adapted the AHCPR guidelines. All of the 17 AHCPR guidelines had both multidisciplinary development panels and systematic reviews of the literature compared with five from the other two categories (p<0.05).

Conclusions: North American guidelines developed subsequent to and in the same topic areas as the AHCPR guidelines are of substantially worse methodological quality and ignore key features important to guideline development. This finding contrasts with previously published conclusions that guideline methodological quality is improving over time.

     

Does the operations of the National Health Insurance Scheme (NHIS) in Ghana align with the goals of Primary Health Care? Perspectives of key stakeholders in northern Ghana

Background

In 2005, the World Health Assembly (WHA) of the World Health Organization (WHO) urged member states to aim at achieving affordable universal coverage and access to key promotive, preventive, curative, rehabilitative and palliative health interventions for all their citizens on the basis of equity and solidarity. Since then, some African countries, including Ghana, have taken steps to introduce national health insurance reforms as one of the key strategies towards achieving universal health coverage (UHC). The aim of this study was to get a better understanding of how Ghana’s health insurance institutions interact with stakeholders and other health sector programmes in promoting primary health care (PHC). Specifically, the study identified the key areas of misalignment between the operations of the NHIS and that of PHC.

Methods

Using qualitative and survey methods, this study involved interviews with various stakeholders in six selected districts in the Upper East region of Ghana. The key stakeholders included the National Health Insurance Authority (NHIA), district coordinators of the National Health Insurance Schemes (NHIS), the Ghana Health Service (GHS) and District Health Management Teams (DHMTs) who supervise the district hospitals, health centers/clinics and the Community-based Health and Planning Services (CHPS) compounds as well as other public and private PHC providers.A stakeholders’ workshop was organized to validate the preliminary results which provided a platform for stakeholders to deliberate on the key areas of misalignment especially, and to elicit additional information, ideas and responses, comments and recommendations from participants for the achievement of the goals of UHC and PHC.

Results

The key areas of misalignments identified during this pilot study included: delays in reimbursements of claims for services provided by health care providers, which serves as a disincentive for service providers to support the NHIS, inadequate coordination among stakeholders in PHC delivery; and inadequate funding for PHC, particularly on preventive and promotive services. Other areas are: the bypassing of PHC facilities due to lack of basic services at the PHC level such as laboratory services, as well as proximity to the district hospitals; and finally the lack of clear understanding of the national policy on PHC.

Conclusion

This study suggests that despite the progress that has been made since the establishment of the NHIS in Ghana, there are still huge gaps that need urgent attention to ensure that the goals of UHC and PHC are met. The key areas of misalignment identified in this study, particularly on the delays in reimbursements need to be taken seriously. It is also important for more dialogue between the NHIA and service providers to address key concerns in the implementation of the NHIS which is key to achieving UHC.