Challenges Affecting Access to Health and Social Care Resources and Time Management among Parents of Children with Rett Syndrome: A Qualitative Case Study

Rare diseases face serious sustainability challenges regarding the distribution of resources geared at health and social needs. Our aim was to describe the barriers experienced by parents of children with Rett Syndrome for accessing care resources. A qualitative case study was conducted among 31 parents of children with Rett syndrome. Data were collected through in-depth interviews, focus groups, researchers’ field notes and parents’ personal documents. A thematic analysis was performed and the Standards for Reporting Qualitative Research (SRQR) guidelines were followed. Three main themes emerged from the data: (a) essential health resources; (b) bureaucracy and social care; and (c) time management constraints. Parents have difficulties accessing appropriate health services for their children. Administrative obstacles exist for accessing public health services, forcing parents to bear the financial cost of specialized care. Time is an essential factor, which conditions the organization of activities for the entire family. Qualitative research offers insight into how parents of children with Rett syndrome experience access to resources and may help improve understanding of how Rett syndrome impacts the lives of both the children and their parents.

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A case study evaluation of a community multidisciplinary team in South East England using a mixed-method approach

British Journal of General Practice ◽

10.3399/bjgp20x711569 ◽

2020 ◽

Vol 70 (suppl 1) ◽

pp. bjgp20X711569

Author(s):

Jessica Wyatt Muscat

Keyword(s):

Mental Health ◽

Mixed Method ◽

Social Care ◽

Free Form ◽

Normalisation Process Theory ◽

Multidisciplinary Teams ◽

Mixed Method Approach ◽

Health And Social Care ◽

Method Approach

BackgroundCommunity multidisciplinary teams (MDTs) represent a model of integrated care comprising health, social care, and the voluntary sector where members work collaboratively to coordinate care for those patients most at risk.AimThe evaluation will answer the question, ‘What are the enablers and what are the restrictors to the embedding of the case study MDT into the routine practice of the health and social care teams involved in the project?’MethodThe MDT was evaluated using a mixed-method approach with normalisation process theory as a methodological tool. Both quantitative and qualitative data were gathered through a questionnaire consisting of the NoMAD survey followed by free-form questions.ResultsThe concepts of the MDT were generally clear, and participants could see the potential benefits of the programme, though this was found to be lower in GPs. Certain professionals, particularly mental health and nursing professionals, found it difficult to integrate the MDT into normal working patterns because of a lack of resources. Participants also felt there was a lack of training for MDT working. A lack of awareness of evidence supporting the programme was shown particularly within management, GP, and nursing roles.ConclusionSpecific recommendations have been made in order to improve the MDT under evaluation. These include adjustments to IT systems and meeting documentation, continued education as to the purpose of the MDT, and the engagement of GPs to enable better buy-in. Recommendations were made to focus the agenda with specialist attendance when necessary, and to expand the MDT remit, particularly in mental health and geriatrics.

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Evaluating Complex Health and Social Care Program Using Multi-criteria Decision Analysis: A Case Study of “Better Together in Amsterdam North”

Value in Health ◽

10.1016/j.jval.2021.02.007 ◽

2021 ◽

Author(s):

Milad Karimi ◽

Lennart van der Zwaan ◽

Karmrul Islam ◽

Joost van Genabeek ◽

Maureen Rutten-van Mölken

Keyword(s):

Decision Analysis ◽

Social Care ◽

Care Program ◽

Multi Criteria Decision Analysis ◽

Health And Social Care

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UK-wide health policy under the Coalition

Dismantling the NHS? ◽

10.1332/policypress/9781447330226.003.0007 ◽

2016 ◽

Author(s):

David Hughes

Keyword(s):

Health Policy ◽

Northern Ireland ◽

Health Services ◽

Policy Making ◽

Social Care ◽

The Other ◽

Executive Orders ◽

Health Reforms ◽

Policy Responses ◽

Health And Social Care

A volume on health reforms under the Coalition must necessarily expand its focus beyond Westminster to consider the larger UK policy context. Legislation enacted in 1998 established devolved assemblies in Scotland, Wales and Northern Ireland with power to make law or issue executive orders in certain specified areas, including health services. This meant that an English NHS overseen by the Westminster Parliament now existed alongside separate NHS systems accountable to devolved governments in the other UK countries. Thus, the major Coalition health reforms heralded by the Health and Social Care Act 2012 applied in the main to England only. However, devolved administrations needed to formulate appropriate policy responses that either maintained differences or moved closer to the English policies. This chapter describes the divergent approaches between the four UK NHS systems, but also sheds light on the nature of coalition policy making.

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Design and Control Issues in Qualitative Case Study Research

International Journal of Qualitative Methods ◽

10.1177/160940690300200204 ◽

2003 ◽

Vol 2 (2) ◽

pp. 33-42 ◽

Cited By ~ 10

Author(s):

Gaynor Lloyd-Jones

Keyword(s):

Qualitative Research ◽

Design Theory ◽

Qualitative Case Study ◽

Case Study Research ◽

Research Process ◽

Theory Testing ◽

Study Research ◽

And Control ◽

Dual Case

Some methodologists have pointed to similarities between experimental method and case study research in terms of design, theory testing and development. However, little is known about how these debates inform qualitative research rationales. The use of a sequential dual case study provided an opportunity to examine these issues and their impact on the unfolding research process. The interplay of inductive and deductive approaches was evident throughout in decisions determining the nature of the research enquiry.

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Qualitative Comparative Analysis: meer behorend bij de kwalitatieve dan de kwantitatieve benadering

KWALON ◽

10.5117/2015.020.003.026 ◽

2015 ◽

Vol 20 (3) ◽

Author(s):

Valérie Pattyn ◽

Lasse Gerrits ◽

Stefan Verweij

Keyword(s):

Qualitative Research ◽

Comparative Analysis ◽

Quantitative Methods ◽

Qualitative Case Study ◽

Qualitative Comparative Analysis ◽

Study Data ◽

Quantitative Approach ◽

Research Tradition ◽

Case Study Data

Qualitative Comparative Analysis: more associated with the qualitative research tradition than with the quantitative approach Qualitative Comparative Analysis: more associated with the qualitative research tradition than with the quantitative approach Qualitative Comparative Analysis (QCA) is an approach that enables systematically comparing qualitative case study data. The fact that QCA borrows certain elements from quantitative methods (such as the use of Boolean algebra and the quantification of conditions and outcomes) may raise questions about the qualitative character of QCA. Based on a discussion of four criteria relating to causal analysis, we argue that QCA belongs to the qualitative research tradition. Where QCA borrows characteristics from the quantitative approach, this is only for the sake of a qualitative objective: to better understand the conditions underlying a particular outcome or phenomenon.

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Discharge policies for homeless people and immigrants: Compromising professional ethics

Nursing Ethics ◽

10.1177/0969733020912518 ◽

2020 ◽

Vol 27 (5) ◽

pp. 1355-1363

Author(s):

Nathan Hodson ◽

Rose Glennerster

Keyword(s):

Best Practice ◽

Ethical Issues ◽

Homeless People ◽

Social Needs ◽

Hostile Environment ◽

Environment Policy ◽

The United Kingdom ◽

Health And Social Care ◽

Healthcare Professions

Discharging a homeless patient from hospital raises ethical issues which are compounded when the patient is from outside the United Kingdom. This article begins with an extended case study of a 30-year-old homeless man from Lithuania describing his complex medical and social needs. It is best practice for all homeless patients to have their housing needs planned for prior to discharge, but this is made more difficult by the United Kingdom’s ‘hostile environment’ policy which creates a subclass of homeless people who are not eligible for support. This means healthcare professionals discharge patients back to homelessness, even when this is likely to adversely affect their health and dignity both directly and indirectly through impairing access to care for chronic conditions. Policies in health and social care which compel professionals to treat some patients with second-class care undermine the ethics of healthcare professions.

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Implementation of a national policy for improving health and social care: a comparative case study using the Consolidated Framework for Implementation Research

BMC Health Services Research ◽

10.1186/s12913-019-4591-2 ◽

2019 ◽

Vol 19 (1) ◽

Author(s):

Helena Strehlenert ◽

Johan Hansson ◽

Monica Elisabeth Nyström ◽

Henna Hasson

Keyword(s):

Implementation Research ◽

Social Care ◽

National Policy ◽

Peer Pressure ◽

Wicked Problems ◽

Local Context ◽

Comparative Case Study ◽

Health And Social Care ◽

National Quality

Abstract Background Comprehensive policies are becoming common for addressing wicked problems in health and social care. Success of these policies often varies between target organizations. This variation can often be attributed to contextual factors. However, there is a lack of knowledge about the conditions for successful policy implementation and how context influences this process. The aim of this study was to investigate county-level actors’ perspectives on the implementation of a comprehensive national policy in three Swedish counties. The policy focused on developing quality of care for elderly based on the use of national quality registries (NQRs) and to improve coordination of care. Methods A comparative case study approach was used. Data was collected longitudinally through documents and interviews. The Consolidated Framework for Implementation Research (CFIR) guided the analysis. Results All three counties shared the view that the policy addressed important issues. Still, there was variation regarding how it was perceived and managed. Adaptable features—i.e., NQRs and improvement coaches—were perceived as relevant and useful. However, the counties differed in their perceptions of another policy component—i.e., senior management program—as an opportunity or a disturbance. This program, while tackling complex issues of collaboration, fell short in recognizing the counties’ pre-existing conditions and needs and also offered few opportunities for adaptations. Performance bonuses and peer pressure were strong incentives for all counties to implement the policy, despite the poor fit of policy content and local context. Conclusions Comprehensive health policies aiming to address wicked problems have better chances of succeeding if the implementation includes assessments of the target organizations’ implementation capacity as well as the implicit quid pro quos involved in policy development. Special attention is warranted regarding the use of financial incentives when dealing with wicked problems since the complexity makes it difficult to align incentives with the goals and to assess potential consequences. Other important aspects in the implementation of such policies are the use of collaborative approaches to engage stakeholders with differing perspectives, and the tailoring of policy communication to facilitate shared understanding and commitment.

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Digitising an Australian university hospital: qualitative analysis of staff-reported impacts

Australian Health Review ◽

10.1071/ah18218 ◽

2020 ◽

Vol 44 (5) ◽

pp. 677

Author(s):

Rebekah Eden ◽

Andrew Burton-Jones ◽

James Grant ◽

Renea Collins ◽

Andrew Staib ◽

...

Keyword(s):

Health Services ◽

Real Time ◽

Time Management ◽

Digital Transformation ◽

Time Data ◽

Research And Practice ◽

Secondary Use ◽

Use Of Data ◽

Real Time Data

Objective This study aims to assist hospitals contemplating digital transformation by assessing the reported qualitative effects of rapidly implementing an integrated eHealth system in a large Australian hospital and determining whether existing literature offers a reliable framework to assess the effects of digitisation. Methods A qualitative, single-site case study was performed using semistructured interviews supplemented by focus groups, observations and documentation. In all, 92 individuals across medical, nursing, allied health, administrative and executive roles provided insights into the eHealth system, which consisted of an electronic medical record, computerised decision support, computerised physician order entry, ePrescribing systems and wireless device integration. These results were compared against a known framework of the effects of hospital digitisation. Results Diverse, mostly positive, effects were reported, largely consistent with existing literature. Several new effects not reported in literature were reported, namely: (1) improvements in accountability for care, individual career development and time management; (2) mixed findings for the availability of real-time data; and (3) positive findings for the secondary use of data. Conclusions The overall positive perceptions of the effects of digitisation should give confidence to health services contemplating rapid digital transformation. Although existing literature provides a reliable framework for impact assessment, new effects are still emerging, and research and practice need to shift towards understanding how clinicians and hospitals can maximise the benefits of digital transformation. What is known about the topic? Hospitals outside the US are increasingly becoming engaged in eHealth transformations. Yet, the reported effects of these technologies are diverse and mixed with qualitative effects rarely reported. What does this paper add? This study provides a qualitative assessment of the effects of an eHealth transformation at a large Australian tertiary hospital. The results provide renewed confidence in the literature because the findings are largely consistent with expectations from prior systematic reviews of impacts. The qualitative approach followed also resulted in the identification of new effects, which included improvements in accountability, time management and individual development, as well as mixed results for real-time data. In addition, substantial improvements in patient outcomes and clinician productivity were reported from the secondary use of data within the eHealth systems. What are the implications for practitioners? The overall positive findings in this large case study should give confidence to other health services contemplating rapid digital transformation. To achieve substantial benefits, hospitals need to understand how they can best leverage the data within these systems to improve the quality and efficiency of patient care. As such, both research and practice need to shift towards understanding how these systems can be used more effectively.

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