1,197 research outputs found
RF/6/14: Don Pinnock interview with Hilary Kuny and Luli Callinicos
No full textAn interview conducted by Don Pinnock circa 1992 with Hilary Kuny and Luli Callinicos. Part of a series carried out at Grahamstown University. and held at the UWC/Robben Island Mayibuye Archive
RF/6: Don Pinnock interview with Tilly First and Hilary Kuny.
No full textAn interview conducted by Don Pinnock in 1988 with Tilly First and Hilary Kuny. Part of a series carried out at Grahamstown University. and held at the UWC/Robben Island Mayibuye Archive
Supported self-management in asthma
Full text linkPeople with asthma learn to live with their condition, taking day-to-day decisions about their self-management. Professional support for self-management increasingly incorporates digital healthcare technology in strategies known to improve asthma control and reduce the risk of attacks. Digital technology, including artificial intelligence, can (and increasing will) contribute to all aspects of the ‘assess’, ‘adjust’, ‘review’ cycle of personalised asthma (self)- management. Specific digital contributions to supported self-management include improving adherence to routine medication, checking and correcting inhaler technique, monitoring asthma status, predicting risk, providing timely advice via interactive action plans, enabling remote communication, avoiding triggers, and changing lifestyle behaviours. Implementation of digital healthcare is a priority for professionals and healthcare systems, but raises challenges of enabling connected integrated systems, avoiding increasing inequities, and will require policy decisions on infrastructure and funding
Supplemental_file_A_B_C – Supplemental material for Time to change the paradigm? A mixed method study of the preferred and potential features of an asthma self-management app
No full textSupplemental material, Supplemental_file_A_B_C for Time to change the paradigm? A mixed method study of the preferred and potential features of an asthma self-management app by Chi Yan Hui, Robert Walton, Brian McKinstry and Hilary Pinnock in Health Informatics Journal</p
Computer decision support systems for asthma:a systematic review
Full text linkBACKGROUND: Increasing use of electronic health records offers the potential to incorporate computer decision support systems (CDSSs) to prompt evidence-based actions within routine consultations.AIM: To synthesise the evidence for the use of CDSSs by professionals managing people with asthma.MATERIALS AND METHODS: We systematically searched Medline, Embase, Health Technology Assessment, Cochrane and Inspec databases (1990 to April 2012, no language restrictions) for trials, and four online repositories for unpublished studies. We also wrote to authors. Eligible studies were randomised controlled trials of CDSSs supporting professional management of asthma. Studies were appraised (Cochrane Risk of Bias Tool) and findings synthesised narratively.RESULTS: A total of 5787 articles were screened, and eight trials were found eligible, with six at high risk of bias. Overall, CDSSs for professionals were ineffective. Usage of the systems was generally low: in the only trial at low risk of bias the CDSS was not used at all. When a CDSS was used, compliance with the advice offered was also low. However, if actually used, CDSSs could result in closer guideline adherence (improve investigating, prescribing and issuing of action plans) and could improve some clinical outcomes. The study at moderate risk of bias showed increased prescribing of inhaled steroids.CONCLUSIONS: The current generation of CDSSs is unlikely to result in improvements in outcomes for patients with asthma because they are rarely used and the advice is not followed. Future decision support systems need to align better with professional workflows so that pertinent and timely advice is easily accessible within the consultation.</p
A set of nine principles for distributed-design information storing
No full textThe issues of distributed working are many, with problems relating to information access and information acquisition the most common (Crabtree et al., 1997). Keeping track of project and team information is becoming more complex as design is increasingly being carried out collaboratively by geographically dispersed design teams across different time zones. The literature notes that little prescription or guidance exists on information management for designers (Culley et al., 1999) and Hicks (2007) highlights a relative lack of overall principles for improving information management. Additionally, evidence from earlier studies by the author into ‘How information is stored in distributed design project work’ reinforces the need for guidance, particularly in a distributed context (Grierson, 2008). Distributed information collections were found to be unorganised, contained unclear information and lacked context. Storing and sharing of distributed information was often time consuming and the tools awkward to use. This can lead to poor project progress and can impact directly on the quality and success of project outcomes (Grierson et al., 2004, 2006). This paper seeks to address these issues by presenting the development, implementation and evaluation of a set of Principles and a Framework to support distributed design information storing in the context of a Global Design class. Through both quantitative and qualitative evaluation methods the Principles were found to help in a number of ways – with the easy access of information; the structuring and organising of information; the creation of an information strategy; the making of information clear and concise; the supporting of documentation during project work; and the strengthening of team work; all helping teams to work towards project outcomes
Adapting, evaluating and implementing pulmonary rehabilitation in Bangladesh
Full text linkINTRODUCTION:
Chronic Respiratory Diseases (CRDs) are increasing worldwide; more than half of the sufferers live in low- and middle-income countries (LMICs). People with CRDs live with troublesome symptoms, especially breathlessness and fatigue, which reduce their exercise capacity and ability to maintain activity levels. This affects quality-of-life, and overall performance, with many people developing co-morbid anxiety and depression. Pulmonary Rehabilitation (PR) aims to reverse the vicious circle of breathlessness, avoidance of activity, muscle weakness, and further increasing inactivity.
There is strong evidence (mainly from high-income countries) that PR improves functional exercise capacity and quality of life, and guidelines recommend PR as an integral part of CRDs care. Despite the potential that implementation of PR could reduce the burden of CRDs, it is notably underprovided in LMICs.
AIMS AND OBJECTIVES:
I aimed to adapt and test the feasibility of a PR programme to be delivered in a low resource setting and initiate strategies for the implementation of this complex intervention in Bangladesh. My objectives were:
• Engage relevant stakeholders, explore, and integrate their views.
• Conduct a systematic review to synthesise the clinical effectiveness, components, and mode of delivery of PR in low-resource settings.
• Identify core components from global PR guidelines.
• Adapt PR protocol for implementation in Bangladesh.
• Undertake a feasibility study using mixed-method (quantitative and qualitative) research.
• With stakeholders, develop and initiate an ongoing implementation strategy for scaling up and delivering PR in Bangladesh.
METHODS:
The PhD work proceeded in six phases addressing these objectives:
Stakeholder engagement: I selected stakeholders according to their interest and influence; conducting seven meetings across the country to engage them in this implementation research programme and to learn about the context.
SYSTEMATIC REVIEW:
I reviewed literature systematically following the Cochrane methodology to identify the evidence generated from LMICs on the effectiveness (improvement of functional exercise capacity and health-related quality of life), useable components, and deliverable models of PR services in a low -resource setting. I searched six databases from 1990 to 2018 with a pre-publication forward citation search in 2020.
GLOBAL GUIDELINES RECOMMENDATIONS:
I reviewed international PR guidelines and identified the key recommended components of PR. I also visited internationally-recognised centres to learn practical techniques.
Adapting a PR programme to the Bangladesh context: I mapped each of the recommended components of PR to an approach that could be delivered in a low resource setting and tailored to the Bangladesh context.
FEASIBILITY STUDY:
I planned a mixed-methods, before-and-after feasibility study of PR delivered to groups in my community-based clinic in Khulna. The feasibility study was interrupted by the COVID-19 pandemic.
The original intention was to conduct an 8-week centre-based PR programme with face-to-face supervised sessions, including exercise and educational programmes. After completing about one-third of the study, this was suspended due to the pandemic.
After a delay of three months, I resumed the feasibility study, having adapted the PR programme for home delivery (with Centre-based assessments) in line with national social distancing regulations and the Sponsor’s requirements.
QUANTITATIVE ANALYSIS:
I compared pre- and post-measurements of exercise capacity (ESWT: Endurance Shuttle Walking Test) and quality-of-life (CAT: COPD Assessment Test) using T-tests or non-parametric tests according to the distribution of the data. Secondary outcomes included dyspnoea and anxiety/depression.
Qualitative data collection and analysis: Interviews with 15 patients, eleven professionals, two hospital/clinic owners cum managers, and three other stakeholders were recorded, transcribed verbatim, and analysed using two approaches:
A grounded theory approach explored patients’ views on living with CRDs and the acceptability, benefits, challenges, and enablers for PR.
A framework approach, using the Normalisation Process Theory (NPT) Toolkit to understand professional/stakeholder’ views about implementing PR in clinical practice.
Finally, I synthesised the findings from both the quantitative and qualitative methods to answer the objectives of the feasibility study.
Develop implementation strategy: I am working with stakeholders to raise awareness meetings, workshops, seminars, and symposiums on PR as a continuous process for the implementation and integration of PR services in routine clinical practice in Bangladesh.
RESULTS:
Initial stakeholder meetings identified multiple challenges: lack of research evidence on clinical effectiveness in Bangladesh, poor patient health literacy, economic and cultural barriers, widespread exposure to risk factors, and lack of knowledge among health professionals. There is a need to educate professionals (and specifically train PR therapists), involve influential political and religious leaders, and provide accessible services. These broadly align with the policy statement of ATS/ERS with regard to raising awareness and generating evidence on PR in our own context.
The systematic review included 13 controlled studies evaluating the effectiveness of PR in LMICs. In most studies, functional exercise capacity and quality of life improved, but 11/13 studies were at high risk of bias. One of the two studies at moderate risk of bias showed no benefit. All programmes included exercise training; most provided education, chest physiotherapy, and breathing exercises. Adapted to the setting, low-cost services used limited equipment and typically combined outpatient/centre delivery with a home/community-based service. From global PR guidelines, I developed a matrix of the practical components with a detailed description of each element and models of delivery in various settings. The components recommended in global PR guidelines are typically described for delivery in high-income settings. I, therefore, adapted the components to my local low-resource community-based context to develop a protocol for PR in Bangladesh. The feasibility study commenced as a Centre-based programme before the pandemic. Of 296 patients referred from my practice, 89 (30%) patients participated allocated to one of four unisex groups. Of the 207 (70%) who refused centre-based PR, 107 (52%) preferred home-based, 69 (33%) community-based, and only 32 (15%) declined to participate in the research, citing concern that PR might exacerbate their breathlessness, or impose an extra financial burden. The first group had completed 70% of the sessions, the second group had completed 50% of the sessions; the third and fourth groups had just started their programmes when the study was suddenly suspended due to the COVID-19 pandemic. Adapted for home delivery in the pandemic. Sixty-one patients were referred for PR; 51 participated (mean age 55 years (SD 12); M: F 33:18). Forty-four patients (86%) completed 11 (70%) of the remotely supervised sessions. Forty participants (78%) attended the post-PR assessment at eight weeks.
QUANTITATIVE ANALYSIS:
Functional exercise capacity measured by Endurance Shuttle Walking Test (ESWT) improved by 345 seconds (Minimum Clinically Important Difference (MCID) is 174s). Pre: median (IQR) 291 (119, 989) vs
post: 544 (60, 1200); P <0.0001. Quality-of-life measured by the COPD Assessment Test improved by 7 (MCID is 2), Pre: median (IQR) 16.5 (4, 28) vs post: 7.5 (0, 26); p<0.0001. Patients defined their condition by the symptoms (as opposed to a disease). Some were surprised at being offered an exercise programme that triggered breathlessness (the symptom they were trying to cure). Most patients were concerned about the affordability and availability of the service. Professionals perceived PR as a novel intervention, and were aware of evidence of its effectiveness, but had no personal experience on which to base their opinions. Implementation strategy. Building on the evidence from this PhD, I am working on continuous stakeholder engagement, building awareness, and developing skilled professionals through seminars, symposiums and workshops.
CONCLUSIONS:
PR is an integral part of care of the increasing burden of CRDs. It is effective, deliverable, and has applicable components for our context. The feasibility study demonstrated the acceptability and potential benefits of implementing PR in Bangladesh. Stakeholder engagement, especially with influential groups, is the key to implementation. Improving awareness, developing a skilled workforce, and a cost-effective, affordable and easily accessible PR model are pre-requisites of providing patients with CRDs
Apprenticeship policy in England: increasing skills versus boosting young people’s job prospects.
Full text linkSuccessive British governments have committed substantial public resources to apprentice training, but far too few young people benefit and not enough high value skills have been developed. That is the central conclusion of a new report published by the Centre for Economic Performance (CEP). The report’s author, Dr Hilary Steedman, who has nearly 30 years of research experience in this field, calls for a change in the country’s apprenticeship model.
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