When and why placebo-prescribing is acceptable and unacceptable: a focus group study of patients' views.
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ABSTRACT: Surveys of doctors suggest that they use placebos and placebo effects clinically to help patients. However, patients' views are not well-understood. We aimed to identify when and why placebo-prescribing in primary care might be acceptable and unacceptable to patients.A purposive diverse sample of 58 English-speaking adults (18 men; aged 19-80 years) participated in 11 focus groups. Vignettes describing doctors prescribing placebos in primary care were used to initiate discussions. Data were analyzed inductively.Participants discussed diverse harms and benefits of placebo-prescribing for individual patients, carers, healthcare providers, and society. Two perspectives on placebo-prescribing were identified. First, the "consequentialist" perspective focused on the potential for beneficial outcomes of placebo-prescribing. Here, some participants thought placebos are beneficial and should be used clinically; they often invoked the power of the mind or mind-body interactions. Others saw placebos as ineffective and therefore a waste of time and money. Second, the "respecting autonomy" perspective emphasized the harms caused by the deceptive processes thought necessary for placebo-prescribing. Here, participants judged placebo-prescribing unacceptable because placebo-prescribers deceive patients, thus a doctor who prescribes placebos cannot be trusted and patients' autonomy is compromised. They also saw placebo-responders as gullible, which deterred them from trying placebos themselves. Overall, the word "placebo" was often thought to imply "ineffective"; some participants suggested alternative carefully chosen language that could enable doctors to prescribe placebos without directly lying to patients.Negative views of placebos derive from beliefs that placebos do not work and/or that they require deception by the doctor. Positive views are pragmatic in that if placebos work then any associated processes (e.g. mechanisms, deception) are deemed unimportant. Public education about placebos and their effects is warranted and research to identify optimal ways of harnessing placebo effects in clinical practice is needed.
Project description:BackgroundPragmatic clinical trials (PCTs) are increasingly being conducted to efficiently generate evidence to inform healthcare decision-making. Despite their growing acceptance, PCTs may involve a variety of ethical issues, including the management of pragmatic clinical trial-collateral findings (PCT-CFs), that is, information that emerges in PCTs that is unrelated to the primary research questions but may have implications for patients, clinicians, and health systems.ObjectiveWe sought to understand patients' views about PCT-CF disclosure, including how, by whom, and the nature and extent of information provided.DesignProspective, qualitative focus group study.ParticipantsFocus groups were conducted in Baltimore, MD; Houston, TX; and Seattle, WA (overall N = 66), during July and August 2019.ApproachAll groups discussed a hypothetical scenario involving the detection of a PCT-CF of contraindicated medications. Participants were asked about their reactions to the PCT-CF and issues related to its disclosure.Key resultsReactions to learning about the PCT-CF were mixed, ranging from fear of a significant health problem, anger that the contraindicated medications had gone unnoticed and/or for being included in research without their permission, to gratitude for the information. Preferences for how such disclosures are made varied but were driven by several consistent desires, namely minimizing patient harm and anxiety and demonstrating trust and respect. Many wanted their treating clinician to be informed of the PCT-CF so that they would be prepared to answer patients' questions and to discuss treatment options.ConclusionsThe detection of PCT-CFs is likely to increase with further expansion of PCTs. As such, clinicians will undoubtedly become involved in the management of PCT-CFs. Our data illustrate some of the challenges clinicians may face when their patients are informed of a PCT-CF and the need to develop guidance for disclosing PCT-CFs in ways that align with patients' preferences and values.
Project description:ObjectivesTo explore patients' experiences of bowel cancer screening and its promotion, and perspectives on possible input from general practice for improving screening rates.DesignQualitative focus group study underpinned by a phenomenological approach.SettingThree general practice clinics in metropolitan South Australia.ParticipantsThirty active general practice patients, aged 50-74 years (60% female) who were eligible for the National Bowel Cancer Screening Program.FindingsFactors affecting screening were described, with particular concerns regarding the nature of the test, screening process and culture. There were mixed views on the role for general practice in bowel cancer screening; some participants appreciated the current process and viewed screening as out of scope of primary care services, while others were in support of general practice involvement. Roles for general practice were proposed that comprised actions across the continuum from providing information through to reminders and the provision and collection of screening kits. With a view that multifaceted strategies are required to encourage participation, community-based solutions were suggested that centred on improving screening culture and education.ConclusionsThere was a view among participants that general practice could play a useful role in supporting the uptake of the National Bowel Cancer Screening Program, however participants saw a need for multiple strategies at different levels and under different jurisdictions.
Project description:ObjectivesExplore the views of two main stakeholders: mental health professionals and volunteers from three European countries, on the provision of volunteering in mental healthcare.DesignA multicountry, multilingual and multicultural qualitative focus group study (n=24) with n=119 participants.ParticipantsVolunteers and mental health professionals in three European countries (Belgium, Portugal and the UK).ResultsMental health professionals and volunteers consider it beneficial offering volunteering to their patients. In this study, six overarching themes arose: (1) there is a framework in which volunteering is organised, (2) the role of the volunteer is multifaceted, (3) every volunteering relationship has a different character, (4) to volunteer is to face challenges, (5) technology has potential in volunteering and (6) volunteering impacts us all. The variability of their views suggests a need for flexibility and innovation in the design and models of the programmes offered.ConclusionsVolunteering is not one single entity and is strongly connected to the cultural context and the mental healthcare services organisation. Despite the contextual differences between these three European countries, this study found extensive commonalities in attitudes towards volunteering in mental health.
Project description:Personal genomic testing provides healthy individuals with access to information about their genetic makeup for purposes including ancestry, paternity, sporting ability and health. Such tests are available commercially and globally, with accessibility expected to continue to grow, including in Australia; yet little is known of the views/expectations of Australians. Focus groups were conducted within a multi-stage, cross-disciplinary project (Genioz) to explore this. In mid-2015, 56 members of the public participated in seven focus groups, allocated into three age groups: 18-24, 25-49, and ≥50 years. Three researchers coded transcripts independently and generated themes. Awareness of personal genomic testing was low, but most could deduce what "personal genomics" might entail. Very few had heard of the term "direct-to-consumer" testing, which has implications for organisations developing information to support individuals in their decision-making. Participants' understanding of genetics was varied and drawn from several sources. There were diverse perceptions of the relative influence of genetics and environment on health, mental health, behavior, talent, or personality. Views about having a personal genomic test were mixed, with greater interest in health-related tests if they believed there was a reason for doing so. However, many expressed scepticisms about the types of tests available, and how the information might be used; concerns were also raised about privacy and the potential for discrimination. These exploratory findings inform subsequent stages of the Genioz study, thereby contributing to strategies of supporting Australians to understand and make meaningful and well-considered decisions about the benefits, harms, and implications of personal genomic tests.
Project description:BackgroundPopulation-based expanded carrier screening (ECS) involves screening for multiple recessive diseases offered to all couples considering a pregnancy or during pregnancy. Previous research indicates that in some countries primary care professionals are perceived as suitable providers for ECS. However, little is known about their perspectives. We therefore aimed to explore primary care professionals' views on population-based ECS.MethodsFour online focus groups with 14 general practitioners (GPs) and 16 community midwives were conducted in the Netherlands.ResultsOur findings highlight various perspectives on the desirability of population-based ECS. Participants agreed that ECS could enhance reproductive autonomy and thereby prevent suffering of the child and/or parents. However, they also raised several ethical, societal, and psychological concerns, including a tendency towards a perfect society, stigmatization, unequal access to screening and negative psychosocial consequences. Participants believed that provision of population-based ECS would be feasible if prerequisites regarding training and reimbursement for providers would be fulfilled. most GPs considered themselves less suitable or capable of providing ECS, in contrast to midwives who did consider themselves suitable. Nevertheless, participants believed that, if implemented, ECS should be offered in primary care or by public health services rather than as hospital-based specialized care, because they believed a primary care ECS offer increases access in terms of time and location.ConclusionsWhile participants believed that an ECS offer would be feasible, they questioned its desirability and priority. Studies on the desirability and feasibility of population-based ECS offered in primary care or public health settings are needed.
Project description:ObjectivesAccurate assessment that a patient is in the last phase of life is a prerequisite for timely initiation of palliative care in patients with a life-limiting disease, such as advanced cancer or advanced organ failure. Several palliative care quality standards recommend the surprise question (SQ) to identify those patients. Little is known about physicians' views on identifying and disclosing the last phase of life of patients with different illness trajectories.MethodsData from two focus groups were analysed using thematic analysis with a phenomenological approach.ResultsFifteen medical specialists and general practitioners participated. Participants thought prediction of patients' last phase of life, i.e. expected death within 1 year, is important. They seemed to find that prediction is more difficult in patients with advanced organ failure compared with cancer. The SQ was considered a useful prognostic tool; its use is facilitated by its simplicity but hampered by its subjective character. The medical specialist was considered mainly responsible for prognosticating and gradually disclosing the last phase. Participants' reluctance to such disclosure was related to uncertainty around prognostication, concerns about depriving patients of hope, affecting the physician-patient relationship, or a lack of time or availability of palliative care services.ConclusionsPhysicians consider the assessment of patients' last phase of life important and support use of the SQ in patients with different illness trajectories. However, barriers in disclosing expected death are prognostic uncertainty, possible deprivation of hope, physician-patient relationship, and lack of time or palliative care services. Future studies should examine patients' preferences for those discussions.
Project description:Evidence-based clinical guidelines could support shared decision-making and help patients to participate actively in their care. However, it is not well known how patients view guidelines as a source of health information. This qualitative study aimed to assess what patients know about guidelines, and what they think of their presentation formats.What is the role of guidelines as health information for patients and how could the implementation of evidence-based information for patients be improved?A qualitative study with focus groups that were built around a semi-structured topic guide. Focus groups were audiotaped and transcribed and analysed using a phenomenographic approach.Five focus groups were carried out in 2012 with a total of 23 participants. Patients searched for health information from the Internet or consulted health professionals or their personal networks. The concepts of guidelines included instructions or standards for health professionals, information given by a health professional to the patient, and material to protect and promote the interests of patients. Some patients did not have a concept for guidelines. Patients felt that health information was abundant and its quality sometimes difficult to assess. They respected conciseness, clarity, clear structure, and specialists or well-known organizations as authors of health information. Patients would like health professionals to deliver and clarify written materials to them or point out to them the relevant Internet sites.The concept of guidelines was not well known among our interviewees; however, they expressed an interest in having more communication on health information, both written information and clarifications with their health professionals.
Project description:BackgroundThe primary healthcare sector comprises various health services, including disease prevention at local level. Research shows that targeted primary healthcare services can prevent the development of acute complications and ultimately reduce the risk of hospitalisations. While interdisciplinary collaboration has been suggested as a means to improve the quality and responsiveness of personal care needs in preventive services, effective implementation remains a challenge. To improve the quality and responsiveness of primary healthcare and to develop initiatives to support the interdisciplinary collaboration in preventive services, there is a need to investigate the views of primary healthcare providers. The aim of this study was to investigate perceptions of preventive care among primary healthcare providers by examining their views on what constitutes a need for hospitalisation, and which strategies are found useful to prevent hospitalisation. Further, to explain how interdisciplinary collaboration can be supported with a view to providing person-centred care.MethodsFive focus group interviews were conducted with 27 healthcare providers, including general practitioners, social and healthcare assistants, occupational therapists, physiotherapists, home care nurses, specialist nurses and acute care nurses. Interviews were transcribed, and analysed with qualitative content analysis.ResultsThree categories emerged from the analysis: 1) Mental and social conditions influence physical functioning and hospitalisation need, 2) Well-established primary healthcare services are important to provide person-centred care through interdisciplinary collaboration and 3) Interdisciplinary collaboration in primary healthcare services is predominantly focussed on handling acute physical conditions. These describe that the healthcare providers are attentive towards the influence of mental, social and physical conditions on the risk of hospitalisation, entailing a focus on person-centred care. Nevertheless, in the preventive services, interdisciplinary collaboration focusses primarily on handling acute physical conditions, which constitutes a barrier for interdisciplinary collaboration.ConclusionsBy focusing on the whole person, it could be possible to provide more person-centred care through interdisciplinary collaboration and ultimately to prevent some hospitalisations. Stakeholders at all levels should be informed about the relevance of considering mental, social and physical conditions to improve the quality and responsiveness of primary healthcare services and to develop initiatives to support interdisciplinary collaboration.
Project description:ObjectiveTo investigate the views, hopes and concerns of patients living with glaucoma and age-related macular degeneration (AMD) regarding vision home-monitoring.DesignQualitative study using focus groups and questionnaires. Participants were given three disease-relevant home-monitoring tests to try. The tests consisted of three visual field tests for the glaucoma groups (Melbourne Rapid Fields, Eyecatcher, Visual Fields Fast) and three acuity and/or contrast-sensitivity tests for AMD groups (Alleye, PopCSF, SpotChecks). Focus group data were thematically analysed.SettingUniversity meeting rooms in London, UK.ParticipantsEight people with glaucoma (five women, median age 74) and seven people with AMD (four women, median age 77) volunteered through two UK-based charities. Participants were excluded if they did not self-report a diagnosis of glaucoma or AMD or if they lived further than a 1-hour travel distance from the university (to ensure minimal travel burden on participants).ResultsSix themes emerged from focus groups, the two most frequently referenced being: 'concerns about home-monitoring' and 'patient and practitioner access to results'. Overall, participants believed home-monitoring could provide patients with a greater sense of control, but also expressed concerns, including: the possibility of home-monitoring replacing face-to-face appointments; the burden placed on clinicians by the need to process additional data; struggles to keep up with requisite technologies; and potential anxiety from seeing worrying results. Most devices were scored highly for usability, though several practical improvements were suggested.ConclusionPatients with mild-to-moderate glaucoma/AMD expect vision home-monitoring to be beneficial, but have significant concerns about its potential implementation.
Project description:BackgroundIn Sweden, vaccine uptake is exceptionally high due to an efficient child immunization program. More than 97% of Swedish children were vaccinated at child health care centers (CHCs) according to the schedule at 2 years of age in 2021. From the age of 6 years, vaccinations are given within the school health care. Maintaining high vaccination coverage over time is one of the central motives to explore and understand drivers for vaccine acceptance. The current study aimed to assess parental vaccine acceptance concerning the national immunization program and explore factors contributing to the high vaccine acceptance in Sweden.MethodsParents of children aged 1-2 years and 8-12 years were recruited through purposive sampling and asked to participate in focus groups held in three cities in Sweden, in February and March 2019. In total, 47 parents participated in two focus groups per city, one session for parents of younger (1-2 years) and older (8-12 years) children respectively. The focus group discussions were analyzed using qualitative content analysis.ResultsParents of children aged 1-2 years expressed the themes; strong compliance to and protection of the value of vaccinations; parents feel safe with an attentive relationship with their nurse; the spectrum of communication needs is essential to meet. For parents to children aged 8-12 years, the themes expressed were; vaccinate to do good for the individual and society; a foundation of trust is built at CHCs for decisions later on; decisions for vaccination become more complex as children get older; communication changes as children get older and need to be explicit and tailored to the situation.ConclusionBoth individual and societal perspectives were shown to influence the vaccination decision for childhood immunizations, as manifested in parental reflections and experiences. As nurses have a key role, it is important to provide them with continued support and tools to facilitate their support for parents in making informed decisions. Continuous work for supporting driving factors for vaccination over time is needed to maintain high vaccine acceptance in Sweden.