They are my worries, so it's me the doctor should listen to-adolescent males' experiences of consultations with general practitioners.

BACKGROUND: Many adolescent males visit a general practitioner regularly, yet many report unmet health needs and negative experiences. This indicates a gap between provided healthcare and the needs of adolescent males. In order to improve adolescent males' possibilities to discuss their health concerns with general practitioners, the study's aim was to explore and describe how adolescent males understand and assign meaning to their experiences of consultations with general practitioners. METHODS: This qualitative study was conducted at two healthcare centres in mid-Sweden in 2022. Nine males 15 to 19 years old described their experiences in semi-structured interviews immediately after consulting a general practitioner, regardless of reason for the consultation and whether or not accompanied by a parent. The analysis was guided by thematic analysis according to Braun & Clarke and reflective lifeworld theory's concepts of openness and sensitivity. RESULTS: One overarching theme, To be listened to, and three themes were developed: To handle insecurity and uneasiness, To be understood and cared for, and To get parental support on his terms. In a good appointment, the general practitioner cares about him, listens attentively, and takes him seriously. More importantly, the general practitioner's understanding permeates the consultation, so that all aspects of it is adapted to him. The adolescent males doubted their ability to express themselves and to understand what would happen in the consultation, and therefore feared being dismissed without receiving any help. Such difficulties may be due to unfinished neurocognitive development and inexperience. They struggled with embarrassment, partly due to notions of masculinity, and strived to balance their needs of parental support, privacy, and being the one that the doctor listens to. CONCLUSIONS: We argue that adolescent males are particularly vulnerable due to on-going neurocognitive and emotional development, inexperience, and notions of masculinity. However, good experiences can be generated through rather simple means. Adolescent males need individual adaptations demonstrating that they are cared for, understood and taken seriously. Furthermore, they need an unhurried pace to facilitate understanding, verbal affirmations to mitigate embarrassment, and help in navigating parental involvement.

The voice of the profession: how the ethical demand is professionally refracted in the work of general practitioners.

BACKGROUND: Among the myriad voices advocating diverging ideas of what general practice ought to be, none seem to adequately capture its ethical core. There is a paucity of attempts to integrate moral theory with empirical accounts of the embodied moral knowledge of GPs in order to inform a general normative theory of good general practice. In this article, we present an empirically grounded model of the professional morality of GPs, and discuss its implications in relation to ethical theories to see whether it might be sustainable as a general practice ethic. METHODS: We observed and interviewed sixteen GPs and GP residents working in health care centres in four Swedish regions between 2015-2017. In keeping with Straussian Grounded Theory, sampling was initially purposeful and later theoretically guided, and data generation, analysis and theoretical integration proceeded in parallel. The focal concept of this article was refined through multidimensional property supplementation. RESULTS: The voice of the profession is one of four concepts in our emerging theory that attempt to capture various motives that affect GPs' everyday moral decisionmaking. It reflects how GPs appreciate the situation by passing three professional-moral judgments: Shall I see what is before me, or take a bird's-eye view? Shall I intervene, or stay my hand? And do I need to speak up, or should I rather shut up? By thus framing the problem, the GP narrows down the range of considerations, allowing them to focus on its morally most pertinent aspects. This process is best understood as a way of heeding Løgstrup's ethical demand. Refracted through the lens of the GP's professional understanding of life, the ethical demand gives rise to specific moral imperatives that may stand in opposition to the express wishes of the other, social norms, or the GP's self-interest. CONCLUSIONS: The voice of the profession makes sense of how GPs frame problematic situations in moral terms. It is coherent enough to be sustainable as a general practice ethic, and might be helpful in explaining why ethical decisions that GPs intuitively understand as justified, but for which social support is lacking, can nevertheless be legitimate.

Effects of telemonitoring follow-up, side effects, and other factors on CPAP adherence.

STUDY OBJECTIVES: This study aimed to investigate the effect of telemonitoring compared with standard clinic visits on adherence to continuous positive airway pressure (CPAP) treatment after 6 months. In addition, the impact of other factors including CPAP side effects on treatment adherence were assessed. METHODS: Consecutive patients (n = 217) who were prescribed CPAP treatment for obstructive sleep apnea were randomized to either telemonitoring or standard-care follow-up. All patients were followed up 6 months after treatment started. Clinical/anthropometric variables, socioeconomical and lifestyle factors, psychological distress, daily function, and personality traits along with CPAP side effects were assessed. Differences between groups were analyzed using 2-sample t-test, chi-square test, or Fisher's exact test. Regression modeling was used to explore associations between dependent and independent variables. RESULTS: There were no differences in CPAP adherence between telemonitoring and standard-care groups after 6 months (53.2% vs 48.7%; P = .54). CPAP side effects such as dry throat (odds ratio = 2.17; 95% confidence interval = 1.25-3.70), increased awakenings (2.50; 1.31-4.76), and exhaling problems (3.70; 1.25-10.1) were independently associated with low CPAP adherence, although these associations were weakened when adding smoking to the model. No other baseline or follow-up factors were associated with CPAP adherence at 6 months. CONCLUSIONS: We could not show that telemonitoring follow-up improved adherence levels. Dry throat, increased awakenings, exhaling problems, and smoking had negative effects on CPAP adherence. Preventing side effects and assessing smoking status is therefore of importance when wanting to improve CPAP adherence. CLINICAL TRIAL REGISTRATION: Registry: ClinicalTrials.gov; Name: Benefits of Telemedicine in CPAP Treatment; URL: https://clinicaltrials.gov/ct2/show/NCT03202602; Identifier: NCT03202602. CITATION: Delijaj F, Lindberg E, Johnsson L, Kristiansson P, Tegelmo T, Theorell-Haglöw J. Effects of telemonitoring follow-up, side effects, and other factors on CPAP adherence. J Clin Sleep Med. 2023;19(10):1785-1795.

Confidentiality matters! Adolescent males' views of primary care in relation to psychosocial health: a structural equation modelling approach.

OBJECTIVE: To investigate to what degree adolescent males (1) value confidentiality, (2) experience confidentiality and are comfortable asking sensitive questions when visiting a general practitioner (GP), and (3) whether self-reported symptoms of poor mental health and health-compromising behaviours (HCB) affect these states of matters. DESIGN: Cross-sectional. SETTING: School-based census on life, health and primary care in Region Sörmland, Sweden. SUBJECTS: 2,358 males aged 15-17 years (response rate 84%). MAIN OUTCOME MEASURES: The impact of poor mental health and HCBs on adolescent males' valuing and experiencing private time with the GP, having professional secrecy explained, and being comfortable asking about the body, love and sex, analysed with structural equation modelling. RESULTS: Almost all respondents valued confidentiality regardless of their mental health or whether they engaged in HCBs: 86% valued spending private time with the GP, and 83% valued receiving a secrecy explanation. Among those who had visited a GP in the past year (n = 1,200), 74% had experienced private time and 42% a secrecy explanation. Three-quarters were at least partly comfortable asking sensitive questions. Adolescent males with HCBs were more likely to experience a secrecy explanation (approximative odds ratio [appOR] 1.26; p = 0.005) and to be comfortable asking about sex than their peers (appOR 1.22; p = 0.007). Respondents reporting experienced confidentiality were more comfortable asking sensitive questions (appOR 1.25-1.54; p ≤ 0.010). CONCLUSION: Confidentiality matters regardless of poor mental health or HCBs and makes adolescent males more comfortable asking sensitive questions. We suggest that GPs consistently offer private time and explain professional secrecy.Key PointsConfidentiality for adolescent males has been scantily studied in relation to mental health and health-compromising behaviours.In this study, most adolescent males valued confidentiality, regardless of their mental health and health-compromising behaviours.Health-compromising behaviours impacted only slightly, and mental health not at all, on experiences of confidentiality in primary care.When provided private time and an explanation of professional secrecy, adolescent males were more comfortable asking the GP sensitive questions.

The voice of the self: a typology of general practitioners' emotional responses to situational and contextual stressors.

OBJECTIVE: To develop a comprehensive typology of emotional reactions associated with stress among general practitioners (GPs), grounded in their own experiences. DESIGN: Data was generated using observations and unstructured interviews, using Straussian grounded theory as the overarching methodology. The typology was built using multidimensional property supplementation. SETTING: Eleven health care centres in urban and rural communities in four Swedish regions. SUBJECTS: Sixteen GPs and GP residents. MAIN OUTCOME MEASURES: Characteristics of GPs' emotional reactions in everyday work situations. RESULTS: Accounts of negative emotions connected to stress revealed four principal personal needs of the GP: trust, efficacy, understanding, and knowledge. Simultaneous threats to more than one of these needs invariably increased the level of tension. From these more complex accounts, six second-order needs could be identified: integrity, judgment, pursuit, authority, autonomy, and competence. The most extreme encounters, in which all four principal needs were threatened, were characterised by the experience of being reduced into an assistant. CONCLUSION: The considerable resilience of GPs may belie some of the pressures that they are facing while being far from a fail-safe defence against being diverted from purposeful and morally responsible action. Our typology distinguishes between different forms of stress that may affect how GPs carry out their work, and connects to the vast literature on GP wellness. The results of this study could be used to develop tools for self-reflection with the aim of countering the effects of stress, and are potentially relevant to future research into its causes and consequences.Key pointsWhat is known•Stress among GPs may have severe consequences for themselves and their patients, and levels of stress appear to be increasing.What this article adds•Stressful situations threaten at least one of four principal needs of the GP: trust, efficacy, understanding, and knowledge.•More complex threats increase the level of tension and bring out second-order needs: integrity, judgment, pursuit, authority, autonomy, and competence.•The wealth of literature on GP stress can be clearly understood through the lens of our four-dimensional typology.

Multidimensional Property Supplementation: A Method for Discovering and Describing Emergent Qualities of Concepts in Grounded Theory Research.

Multidimensional property supplementation is a grounded theory method for analysis that conceives of concepts as multidimensional spaces of possibilities. It is applied in an iterative process comprising four steps: expansion, whereby vague codes are split and contraries postulated; abstraction of practically significant differences in terms of properties and dimensions; geometrization of properties to create conceptual subspaces that supplant subcategories and have additional, emergent qualities; and unification of the concept by validating it against data and relieving it of properties that do not tie in sufficiently with other concepts. Multidimensional conceptual models encourage the researcher to elaborate properties that explain, predict, or guide action. Fully developed, they can be easily connected to others in a process and function, by virtue of their emergent qualities, as falsifiable hypotheses in their own right. For these reasons, multidimensional property supplementation is open to epistemological justification without presuming acceptance of techniques specific to grounded theory.

How general practitioners decide on maxims of action in response to demands from conflicting sets of norms: a grounded theory study.

BACKGROUND: The work of general practitioners (GPs) is infused by norms from several movements, of which evidence based medicine, patient-centredness, and virtue ethics are some of the most influential. Their precepts are not clearly reconcilable, and structural factors may limit their application. In this paper, we develop a conceptual framework that explains how GPs respond, across different fields of interaction in their daily work, to the pressure exerted by divergent norms. METHODS: Data was generated from unstructured interviews with and observations of sixteen Swedish GPs (who have by definition more than five years of experience after license to practice) and family medicine residents (with less than five years of experience) between 2015 and 2017. Straussian Grounded Theory was used for analysis. RESULTS: We found that GPs' maxims of action can be characterised in terms of dichotomous responses to demands from four distinct sets of norms, or "voices": the situation, the self, the system, and the profession. From the interactions between these voices emerge sixteen clusters of maxims of action. Based on the common features of the maxims in each cluster, we have developed a conceptual framework that appears to be rich enough to capture the meaning of the ethical decisions that GPs make in their daily work, yet has a high enough level of abstraction to be helpful when discussing the factors that influence those decisions. CONCLUSIONS: Our four-dimensional model of GPs' responses to norms is a first step toward a middle-range theory of quality from GPs' perspective. It brings out the complexity of their practice, reveals tensions that easily remain invisible in more concrete accounts of their actions, and aids the transferability of substantive theories on GPs' ethical decision making. By explaining the nature of the ethical conflicts that they experience, we provide some clues as to why efforts to improve quality by imposing additional norms on GPs may meet with varying degrees of success.

Autonomy is a Right, Not a Feat: How Theoretical Misconceptions have Muddled the Debate on Dynamic Consent to Biobank Research.

Should people be involved as active participants in longitudinal medical research, as opposed to remaining passive providers of data and material? We argue in this article that misconceptions of 'autonomy' as a kind of feat rather than a right are to blame for much of the confusion surrounding the debate of dynamic versus broad consent. Keeping in mind two foundational facts of human life, freedom and dignity, we elaborate three moral principles - those of autonomy, integrity and authority - to better see what is at stake. Respect for autonomy is to recognize the other's right to decide in matters that are important to them. Respect for integrity is to meet, in one's relationship with the other, their need to navigate the intersection between private and social life. Respect for authority is to empower the other - to help them to cultivate their responsibility as citizens. On our account, to force information onto someone who does not want it is not to respect that person's autonomy, but to violate integrity in the name of empowerment. Empowerment, not respect for autonomy, is the aim that sets patient-centred initiatives employing a dynamic consent model apart from other consent models. Whether this is ultimately morally justified depends on whether empowerment ought to be a goal of medical research, which is questionable.

Adequate trust avails, mistaken trust matters: on the moral responsibility of doctors as proxies for patients' trust in biobank research.

In Sweden, most patients are recruited into biobank research by non-researcher doctors. Patients' trust in doctors may therefore be important to their willingness to participate. We suggest a model of trust that makes sense of such transitions of trust between domains and distinguishes adequate trust from mistaken trust. The unique position of doctors implies, we argue, a Kantian imperfect duty to compensate for patients' mistaken trust. There are at least three kinds of mistaken trust, each of which requires a different set of countermeasures. First, trust is mistaken when necessary competence is lacking; the competence must be developed or the illusion dispelled. Second, trust is irrational whenever the patient is mistaken about his actual reasons for trusting. Care must therefore be taken to support the patient's reasoning and moral agency. Third, some patients inappropriately trust doctors to recommend only research that will benefit them directly. Such trust should be counteracted by nurturing a culture where patients expect to be asked occasionally to contribute to the common good.

Hypothetical and factual willingness to participate in biobank research.

In the debate on biobank regulation, arguments often draw upon findings in surveys on public attitudes. However, surveys on willingness to participate in research may not always predict actual participation rates. We compared hypothetical willingness as estimated in 11 surveys conducted in Sweden, Iceland, United Kingdom, Ireland, United States and Singapore to factual participation rates in 12 biobank studies. Studies were matched by country and approximate time frame. Of 22 pairwise comparisons, 12 suggest that factual willingness to participate in biobank research is greater than hypothetical, six indicate the converse relationship, and four are inconclusive. Factual donors, in particular when recruited in health care or otherwise face-to-face with the researcher, are possibly motivated by factors that are less influential in a hypothetical context, such as altruism, trust, and sense of duty. The value of surveys in assessing factual willingness may thus be limited.

Patients' refusal to consent to storage and use of samples in Swedish biobanks: cross sectional study.

OBJECTIVES: To estimate how many people object to storage of biological samples collected in health care in Sweden and to their use in research and how many withdraw previous consent. DESIGN: Cross sectional study of register data. SETTING: Biobanks used in Swedish health care, 2005-6. Population Data on refusal to consent were obtained for 1.4 million biobank samples per year from 20 of 21 counties. MAIN OUTCOME MEASURES: Rates of preliminary refusal to consent, confirmed refusal, and withdrawal of consent. RESULTS: Patients refused consent to either storage or use of their samples in about 1 in 690 cases; about 1 in 1600 confirmed their decision by completing a dissent form. Rather than having the samples destroyed, about 1 in 6200 patients wanted to restrict their use. Of those who had previously consented, about 1 in 19,000 withdrew their consent. CONCLUSIONS: Refusal to consent to biobank research in Sweden is rare, and the interests of individuals and research interests need not be at odds. The Swedish healthcare organisation is currently obliged to obtain either consent or refusal to each potential use of each sample taken, and lack of consent to research is used as the default position. A system of presumed consent with straightforward opt out would correspond with people's attitudes, as expressed in their actions, towards biobank research.

The right to withdraw consent to research on biobank samples.

Ethical guidelines commonly state that research subjects should have a right to withdraw consent to participate. According to the guidelines we have studied, this right applies also to research on biological samples. However, research conducted on human subjects themselves differs in important respects from research on biological samples. It is therefore not obvious that the same rights should be granted research participants in the two cases. This paper investigates arguments for and against granting a right to withdraw consent to research on biobank samples. We conclude that (1) there are no explicit arguments for such a right in the guidelines we have studied, (2) the arguments against such a right are inconclusive, (3) considerations of autonomy, privacy, personal integrity, and trust in medical research provide sufficient reasons for granting a right to withdraw consent to research on biobank samples, (4) in certain cases, research participants should be allowed to waive this right.