Potential donor family behaviours, experiences and decisions following implementation of the Organ Donation (Deemed Consent) Act 2019 in England: A qualitative study.

BACKGROUND: In May 2020, England implemented "deemed consent" legislation, to make it easier for individuals to donate their organs and convey their decision when alive. Families are supposed to support the decision but can still override it if they disagree. We aimed to learn more about this changed role when families were approached about organ donation. METHODS: A qualitative study using semi-structured interviews with families, feedback from nurses, comparisons with audit data, and public involvement. We used framework analysis with a health systems perspective and utilitarian theory to explore if the law worked. FINDINGS: 103 participants were interviewed representing 83 potential donation cases. In 31/83 (37%) cases donation was fully supported, in 41/83 (49%) cases families supported retrieval of some organs, tissues and procedures, and in 11/83 (13%) cases families declined completely. Themes explaining why the law was not (yet) working included: Understanding and agreeing the family's role, confusion about deemed consent, not supporting the deceased expressed decisions, organ donation as too much of a harm, the different experiences of donation pathways, transition from end-of-life to organ donation discussions, experiences of 'consent', paperwork and processes. Families frequently questioned if their relative wanted to have a surgery rather than supporting the person who died to save lives. CONCLUSION: Families use the unique experience of their relative dying in intensive care to create alternate narratives whereby the outcome satisfies their own utility and not necessarily those of the potential donor. New public ongoing media campaigns crafted to be more supportive of organ donation as a benefit to transplant recipients could help families overcome the many difficulties they encounter at the bedside. IMPLICATIONS FOR CLINICAL PRACTICE: The soft opt-out policy has not empowered nurses to help families at their most vulnerable to increase their support for and consent to deceased organ donation.

The case for developing a cohesive systems approach to research across unhealthy commodity industries.

OBJECTIVES: Most non-communicable diseases are preventable and largely driven by the consumption of harmful products, such as tobacco, alcohol, gambling and ultra-processed food and drink products, collectively termed unhealthy commodities. This paper explores the links between unhealthy commodity industries (UCIs), analyses the extent of alignment across their corporate political strategies, and proposes a cohesive systems approach to research across UCIs. METHODS: We held an expert consultation on analysing the involvement of UCIs in public health policy, conducted an analysis of business links across UCIs, and employed taxonomies of corporate political activity to collate, compare and illustrate strategies employed by the alcohol, ultra-processed food and drink products, tobacco and gambling industries. RESULTS: There are clear commonalities across UCIs' strategies in shaping evidence, employing narratives and framing techniques, constituency building and policy substitution. There is also consistent evidence of business links between UCIs, as well as complex relationships with government agencies, often allowing UCIs to engage in policy-making forums. This knowledge indicates that the role of all UCIs in public health policy would benefit from a common approach to analysis. This enables the development of a theoretical framework for understanding how UCIs influence the policy process. It highlights the need for a deeper and broader understanding of conflicts of interests and how to avoid them; and a broader conception of what constitutes strong evidence generated by a wider range of research types. CONCLUSION: UCIs employ shared strategies to shape public health policy, protecting business interests, and thereby contributing to the perpetuation of non-communicable diseases. A cohesive systems approach to research across UCIs is required to deepen shared understanding of this complex and interconnected area and also to inform a more effective and coherent response.

Responding to the mental health consequences of the 2015-2016 terrorist attacks in Tunisia, Paris and Brussels: implementation and treatment experiences in the United Kingdom.

OBJECTIVES: To explore whether the Screen and Treat Programme to support United Kingdom citizens potentially affected by terrorist attacks in Tunisia (2015), Paris (2015) and Brussels (2016) was effective in identifying and referring people to mental health services, to examine the programme's acceptability to users and to understand how agencies involved worked together. METHODS: Individuals offered screening by the programme (n = 529) were invited to participate in the study and were sent a questionnaire. Follow-up interviews were conducted with questionnaire respondents who consented and with employees of agencies involved in the programme's planning and delivery. Seventy-seven people affected by the attacks completed questionnaires, 35 of those were also interviewed, and 1 further person only participated in an interview. Eleven people from agencies organizing and delivering the programme and five clinician-managers were also interviewed. RESULTS: Most service users said the attacks had a major impact on their lives. Many reported anxiety, depression, difficulty going out or travelling, sleep problems, panic attacks, flashbacks and hyper-vigilance. A third had reduced their working hours and a similar proportion had taken sick leave. Two-thirds sought help from their General Practitioner (GP) before being contacted by the programme, but almost all thought their GP had not been helpful in dealing with post-traumatic stress disorder (PTSD) or referring to appropriate care. Several people were prescribed psychotropic medication; only a few were referred to mental health professionals. Many participants used help offered by organizations external to National Health Service, with mixed experiences. Waiting times for treatment varied from no delay to a few months. Most interviewees thought the programme should have started sooner and provided more information about sources of support. Most users found treatment received via the programme helpful. Professionals involved in organizing and delivering the programme thought that bureaucratic delays in setting it up were key limitations on effectiveness. Clinician interviewees thought an outreach approach was needed to identify at-risk individuals. CONCLUSIONS: Users who took part in the programme were satisfied with their treatment, although many thought it should have been offered sooner. Funding and data sharing between agencies were the main barriers to timely contact with affected individuals. Self-referral, GP identification of PTSD and GP referral to appropriate care were regarded as ineffective, suggesting that people affected by similar future incidents should be supported better and assisted more promptly to access treatment.

Exploring the impacts of the 2012 Health and Social Care Act reforms to commissioning on clinical activity in the English NHS: a mixed methods study of cervical screening.

OBJECTIVES: Explore the impact of changes to commissioning introduced in England by the Health and Social Care Act 2012 (HSCA) on cervical screening activity in areas identified empirically as particularly affected organisationally by the reforms. METHODS: Qualitative followed by quantitative methods. Qualitative: semi-structured interviews (with NHS commissioners, managers, clinicians, senior administrative staff from Clinical Commissioning Groups (CCGs), local authorities, service providers), observations of commissioning meetings in two metropolitan areas of England. Quantitative: triple-difference analysis of national administrative data. Variability in the expected effects of HSCA on commissioning was measured by comparing CCGs working with one local authority with CCGs working with multiple local authorities. To control for unmeasured confounders, differential changes over time in cervical screening rates (among women, 25-64 years) between CCGs more and less likely to have been affected by HSCA commissioning organisational change were compared with another outcome-unassisted birth rates-largely unaffected by HSCA changes. RESULTS: Interviewees identified that cervical screening commissioning and provision was more complex and 'fragmented', with responsibilities less certain, following the HSCA. Interviewees predicted this would reduce cervical screening rates in some areas more than others. Quantitative findings supported these predictions. Areas where CCGs dealt with multiple local authorities experienced a larger decline in cervical screening rates (1.4%) than those dealing with one local authority (1.0%). Over the same period, unassisted deliveries decreased by 1.6% and 2.0%, respectively, in the two groups. CONCLUSIONS: Arrangements for commissioning and delivering cervical screening were disrupted and made more complex by the HSCA. Areas most affected saw a greater decline in screening rates than others. The fact that this was identified qualitatively and then confirmed quantitatively strengthens this finding. The study suggests large-scale health system reforms may have unintended consequences, and that complex commissioning arrangements may be problematic.

The Public Health Responsibility Deal: Using a Systems-Level Analysis to Understand the Lack of Impact on Alcohol, Food, Physical Activity, and Workplace Health Sub-Systems.

The extent to which government should partner with business interests such as the alcohol, food, and other industries in order to improve public health is a subject of ongoing debate. A common approach involves developing voluntary agreements with industry or allowing them to self-regulate. In England, the most recent example of this was the Public Health Responsibility Deal (RD), a public⁻private partnership launched in 2011 under the then Conservative-led coalition government. The RD was organised around a series of voluntary agreements that aim to bring together government, academic experts, and commercial, public sector and voluntary organisations to commit to pledges to undertake actions of public health benefit. This paper brings together the main findings and implications of the evaluation of the RD using a systems approach. We analysed the functioning of the RD exploring the causal pathways involved and how they helped or hindered the RD; the structures and processes; feedback loops and how they might have constrained or potentiated the effects of the RD; and how resilient the wider systems were to change (i.e., the alcohol, food, and other systems interacted with). Both the production and uptake of pledges by RD partners were largely driven by the interests of partners themselves, enabling these wider systems to resist change. This analysis demonstrates how and why the RD did not meet its objectives. The findings have lessons for the development of effective alcohol, food and other policies, for defining the role of unhealthy commodity industries, and for understanding the limits of industry self-regulation as a public health measure.

Commissioning healthcare for people with long term conditions: the persistence of relational contracting in England's NHS quasi-market.

BACKGROUND: Since 1991, there has been a series of reforms of the English National Health Service (NHS) entailing an increasing separation between the commissioners of services and a widening range of public and independent sector providers able to compete for contracts to provide services to NHS patients. We examine the extent to which local commissioners had adopted a market-oriented (transactional) model of commissioning of care for people with long term conditions several years into the latest period of market-oriented reform. The paper also considers the factors that may have inhibited or supported market-oriented behaviour, including the presence of conditions conducive to a health care quasi-market. METHODS: We studied the commissioning of services for people with three long term conditions - diabetes, stroke and dementia - in three English primary care trust (PCT) areas over two years (2010-12). We took a broadly ethnographic approach to understanding the day-to-day practice of commissioning. Data were collected through interviews, observation of meetings and from documents. RESULTS: In contrast to a transactional, market-related approach organised around commissioner choice of provider and associated contracting, commissioning was largely relational, based on trust and collaboration with incumbent providers. There was limited sign of commissioners significantly challenging providers, changing providers, or decommissioning services.In none of the service areas were all the conditions for a well functioning quasi-market in health care in place. Choice of provider was generally absent or limited; information on demand and resource requirements was highly imperfect; motivations were complex; and transaction costs uncertain, but likely to be high. It was difficult to divide care into neat units for contracting purposes. As a result, it is scarcely surprising that commissioning practice in relation to all six commissioning developments was dominated by a relational approach. CONCLUSIONS: Our findings challenge the notion of a strict separation of commissioners and providers, and instead demonstrate the adaptive persistence of relational commissioning based on continuity of provision, trust and interdependence between commissioners and providers, at least for services for people with long-term conditions.

Pesquisa qualitativa na atenção à saúde / Qualitative research in health care

Oferece uma introdução clara e acessível à condução e à interpretação da pesquisa qualitativa. A obra apresenta novas informações sobre ética na pesquisa qualitativa, auxiliando na avaliação da qualidade e na utilização dos métodos qualitativos nos diferentes estilos de pesquisa e na emergente área da síntese de pesquisa.