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BACKGROUND: People with Down syndrome have a genetically increased risk of developing early onset Alzheimer's dementia. An interview study with healthcare providers, patient representatives and employees in residential and work facilities was conducted to identify deficits in the healthcare process and approaches to overcoming them. METHOD: In this study 14 semi-structured interviews were conducted and analyzed using qualitative content analysis. RESULTS: A lack of knowledge and experience on the part of medical service providers in dealing with and providing medical care for people with Down syndrome was identified as a key challenge. In addition, the diagnosis of dementia in people with Down syndrome is difficult for various reasons (including lack of appropriate diagnostic tools in standard care and lack of time or financial resources). Doubts were expressed about the efficacy of antidementia medications and the reasons for the increased use of sedatives were discussed. Attentive observation of behavior and involvement of caregivers, regular review and reduction of polypharmacy and the use of alternative behavior modification techniques were mentioned as possible solutions. CONCLUSION: The identified deficits in the medical care of the target population and the approaches to solving them will be incorporated into the development of health policy recommendations in order to optimize the care situation of those affected in the long term.
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PURPOSE: The aim of this study was to gain insight into the perspectives of older adults on the quality of geriatric rehabilitation (GR) during the trajectory of GR from admission until six weeks after discharge. METHODS: We conducted a longitudinal qualitative study. Participants were interviewed three times: at the start of rehabilitation, at discharge, and six weeks after discharge. The data were analysed using a thematic analysis. RESULTS: In total, 50 interviews were conducted, with 18 participants being interviewed multiple times. The following themes emerged: 1. A bond of trust with health care professionals (HCPs), 2. Being prepared and informed at all stages of GR, 3. Participants emphasise physical and occupational therapy rather than other aspects of care as comprising GR 4. Changing needs regarding (the extent of) involvement in decision-making, 5. Contact with family and peers. CONCLUSION: For older adults, preparation for and good organisation of rehabilitation and social interaction with HCPs and other older adults were found to be important for the perceived quality of GR. Social interaction is influenced by how HCPs engage with older adults in all the phases of the rehabilitation process. Older adults have varying preferences about involvement in decision-making during GR. These perspectives should be acknowledged and acted upon in clinical practice to further improve the quality of care in GR.
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In the wake of recent medical developments in small animal practice, curing animals of their illnesses and restoring their health can be realized better than ever before. However, the growing medical possibilities are also leading to an increase in demand for better care for patients suffering from terminal illnesses. Consequently, the field of animal hospice and palliative care has become increasingly available, enabling veterinarians to optimize the quality of life of patients, such as dogs and cats, who no longer have a prospect of full recovery. Using qualitative, semi-structured interviews with 20 small animal veterinarians involved in hospice and palliative care, we investigated the factors that motivate veterinarians to become involved in hospice and palliative care and explored the importance of relationships, communication, time and infrastructure in this area. Findings show that personal experiences with their own pets or during training or work life motivated veterinarians to provide this service. Although veterinarians highlighted the importance of empathetic-driven relationships, they were aware that keeping an emotional distance from the patient and caregiver is significant to provide successful care. Further, veterinarians emphasized their high investment of time that resulted primarily from the increased frequency and provided opportunities to communicate with caregivers. The overall conclusion is that having time for patients and the patients' caregivers is one of the most important aspects of work in this field. However, as it will be also shown, veterinarians must consider aspects of self-care management by reflecting on their own time and energy resources while caring for animals and their caregivers.
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INTRODUCTION: Coaching interventions in graduate medical education have proven successful in increasing technical and communication skills, reducing errors, and improving patient care. Effective stakeholder engagement enhances the relevance, value, and long-term sustainability of interventions, yet specific strategies for stakeholder engagement remain uncertain. The purpose of this article is to identify strategies to foster engagement of diverse stakeholder groups in coaching interventions. MATERIAL AND METHODS: We conducted 35 semi-structured interviews between November 2021 and April 2022 with purposively sampled key stakeholders that captured participants' perspectives on physicians' communication training needs, roles, and involvement in, as well as contextual factors, facilitators, barriers, and improvement strategies of the multi-departmental Communication Coaching Program at our institution. We utilized the Consolidated Framework of Implementation Research to guide data collection and analysis. An analytic approach relied on team-based thematic analysis with high inter-coder agreement between three raters (Cohen's kappa coefficient 0.83). Several validation techniques were used to enhance the credibility and trustworthiness of the study. RESULTS: Analysis of transcribed interviews with stakeholders directly involved in the Communication Coaching Program, including 10 residents, 10 faculty coaches, 9 medical education leaders, and 8 programmatic sponsors, revealed five key engagement strategies: (1) embrace collaborative design, (2) enable flexible adjustments and modifications, (3) secure funding, (4) identify champions, and (5) demonstrate outcomes. Additionally, a patient-centered approach to delivering the best possible patient care emerged as a primary objective that linked all stakeholder groups. DISCUSSION: Evaluating the experiences of key stakeholders in the Communication Coaching Program helped identify targetable strategies to facilitate participant engagement across all organizational levels. The analysis also revealed universal alignment around the importance of providing high-quality patient care. Insights from this work provide guidance for clinical training programs moving toward the implementation of coaching interventions.
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Comunicação , Internato e Residência , Tutoria , Pesquisa Qualitativa , Participação dos Interessados , Humanos , Internato e Residência/organização & administração , Tutoria/organização & administração , Entrevistas como Assunto , Educação de Pós-Graduação em MedicinaRESUMO
Introduction: The aim of this study was to explore how individuals aged 70 or older living in Sweden understood a recent suicidal act, and what changed in them and around them in the aftermath. Method: Four women and five men (age range 71-91 years) receiving care at a geriatric psychiatric outpatient clinic in a large Swedish city took part in two interviews about their most recent suicidal act. Most of the women and none of the men had engaged in prior suicidal acts. Interpretative phenomenological analysis was employed. Results: The suicidal act was explained as a response to losses (in physical and cognitive functions, social roles and relationships) that rendered previous coping strategies unviable. The participants reported being dependent on a healthcare system that they experienced as indifferent and even dismissive of their suffering. The suicidal act was described as an unplanned act of despair. Positive changes followed for participants who reported having had suicidal ideation prior to the suicidal act and had insights into its triggers. Some gained access to needed medical care; others developed greater awareness of their psychological needs and became more effective at coping. Individuals who said that they had not had suicidal thoughts prior to the suicidal act and could not explain it reported no positive change in the aftermath. The respondents' narratives indicated gendered themes. Discussion: Participants' age-related losses were in many cases exacerbated by negative interactions with health care providers, indicating that continued attention needs to be given to implicit ageism in medical professionals. The suicidal acts were described as impulsive, which was unexpected because a dominant belief is that older adult suicidal behavior is planned. One reason for the discrepancy may be that this study focused on nonfatal acts, and planned acts may be more likely to be fatal. Another reason could be shame due to suicide stigma. Alternatively, these acts were truly unplanned. The older adult suicide planning question should be addressed in larger studies across geographical and cultural settings. Future studies should also include questions about gender norms of suicidality and separately examine women's and men's data.
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This exploratory interview study investigated nursing staff members' perspectives on the fundamentals of end-of-life communication with older people as part of advance care planning in home care, nursing home, and hospital settings. Separate semi-structured interviews were conducted with 17 nursing staff members about their experiences, opinions, and preferences before, during, and after end-of-life conversations. Overall themes clustering the fundamentals include preconditions such as feeling comfortable talking about the end of life and creating space for open communication. Fundamentals related to the actual conversation-such as using senses and applying associative communication techniques (e.g., using understandable language), following conversation phases, and being aware of interprofessional collaboration-were also considered important. This study emphasizes the importance of moving along with the older person as well as connecting, adapting, and letting go of control over the conversation's outcome. Many fundamentals can be traced back to the basics of nursing and the humanity of conversation.
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Using a qualitative design, we explored how life transitions influence Danish adults' physical activity beliefs and behaviour adopting the Theory of Planned Behaviour as a guiding framework. Life story interviews with 42 participants revealed 6 salient life transition periods which affected physical activity behaviour, either in a disruptive way resulting in decreased activity levels or in a facilitative manner, providing opportunities for increased activity engagement. The identified life transition periods uniquely influenced individuals' attitudes, subjective norms and perceived behavioural control (PBC) beliefs, thus affecting motivations toward physical activity. Specifically, starting primary school or a career, forming a romantic relationship, and having a child primarily shaped subjective norm and PBC, while leaving home was especially influential on PBC and retirement on attitudes and PBC. Consistent themes across the transition periods included time constraints and opportunities to be active, supportive social contexts, access to facilities and having a need to be active.
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BACKGROUND: As person centred care (PCC) is being implemented globally, higher educational institutions (HEI) have begun to play a crucial part in enabling this transition. In Sweden, however, the delivery of PCC is inconsistently implemented in medicine, nursing, occupational therapy, and physiotherapy study programmes. This inconsistency is partly the result of a lack of a national strategy across HEI. Program directors are responsible for the PCC content of their programs, so their views influence how PCC is taught. Using interviews with programme directors in higher education, we aim to deepen the understanding of the preconditions needed to implement PCC by exploring discourses and identifying subject positions of how PCC is taught and learned. METHODS: We performed a discourse analysis based on interviews with program directors in the above-mentioned national study programmes. A discourse can be seen as a struggle over identity. The subject position - i.e., discourses designate positions for persons to occupy as subjects - guided our analysis and identification of the subject positions of the teacher and the student in teaching and learning PCC. RESULTS: This study unfolded in two main antagonistic aspects with respect to teaching and learning PCC, resulting in four subject positions for the teacher and four corresponding subject positions for the students. First, the teacher and student were given a subject position as change agents towards a more egalitarian healthcare and were assigned a subject position to cope with a practical reality they could not change. Second, the teacher and student were assigned a subject position that embodied profession-specific identities, navigating and valuing these boundaries. Simultaneously, both teachers and students assumed a subject position that required interprofessional interaction and co-creation for teaching and learning PCC. CONCLUSION: This study demonstrates the discursive tension surrounding the implementation of PCC in HEI, and the findings can serve as a basis for creating future relevant and high-quality learning activities. The process of negotiating diverse and co-existing perspectives as well as building interprofessional trust when incorporating PCC into higher education is essential and requires further exploration.
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Entrevistas como Assunto , Assistência Centrada no Paciente , Humanos , Suécia , Currículo , Pesquisa QualitativaRESUMO
BACKGROUND: Persons with cognitive impairment may experience difficulties with language and cognition that interfere with their ability to communicate about health-related decision making. OBJECTIVE: We developed a visual elicitation technique to facilitate conversations about preferences concerning potential future supportive care needs and explored the utility of this technique in a qualitative interview study. METHODS: We conducted 15 online interviews with persons with mild cognitive impairment and mild to moderate dementia, using storytelling and a virtual tool designed to facilitate discussion about preferences for supportive care. Interviews were transcribed verbatim and analyzed using an inductive qualitative data analysis method. We report our findings with respect to several main themes. First, we considered participants' perspectives on supportive care. Next, we examined the utility of the tool for engaging participants in conversation through two themes: cognitive and communicative processes exhibited by participants; and dialogic interactions between the interviewer and the participant. RESULTS: With respect to participants' perspectives on supportive care, common themes included considerations relating to informal caregivers such as availability and burden, and the quality of care options such as paid caregivers. Other themes, such as the importance of making decisions as a family, considerations related to facing these challenges on one's own, and the fluid nature of decision making, also emerged. Common communicative processes included not being responsive to the question and unclear responses. Common cognitive processes included uncertainty and introspection, or self-awareness, of one's cognitive abilities. Last, we examined dialogic interactions between the participant and the interviewer to better understand engagement with the tool. The interviewer was active in using the visualization tool to facilitate the conversation, and participants engaged with the interface to varying degrees. Some participants expressed greater agency and involvement through suggesting images, elaborating on their or the interviewer's comments, and suggesting icon labels. CONCLUSION: This article presents a visual method to engage older adults with cognitive impairment in active dialogue about complex decisions. Though designed for a research setting, the diverse communication and participant-interviewer interaction patterns observed in this study suggest that the tool might be adapted for use in clinical or community settings.
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Disfunção Cognitiva , Comunicação , Humanos , Disfunção Cognitiva/terapia , Feminino , Masculino , Idoso , Cuidadores/psicologia , Pessoa de Meia-Idade , Tomada de Decisões , Idoso de 80 Anos ou mais , Demência/terapiaRESUMO
INTRODUCTION: From a surgeon's perspective, appendicitis is treated with appendectomy and sometimes a normal appendix is removed. This study aimed to investigate the patients' perspectives on having surgery but not appendicitis and their involvement in treatment decisions. METHODS: This study is reported according to the COnsolidated criteria for REporting Qualitative research (COREQ) guideline. Eligible participants either had a normal diagnostic laparoscopy with no resection of the appendix or a negative appendectomy confirmed by histopathology. Interviews were conducted using a semi-structured interview guide and transcribed verbatim. Data were analyzed using content analysis. RESULTS: This study consisted of 15 interviews. Analysis of the interviews resulted in the formulation of four categories: (1) discovering the results of the histopathology report, (2) thoughts on having a normal appendix removed or left in situ, (3) the scarce use of shared decision-making, and (4) general anesthesia and the risk of a burst appendix made the participants nervous. CONCLUSION: The amount of information communicated to the patients before and after surgery was sparse. The participants were not aware of the histopathology results and the participants were not involved in decision-making and were generally anxious about anesthesia and a burst appendix.
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Apendicectomia , Apendicite , Pesquisa Qualitativa , Humanos , Apendicite/cirurgia , Apendicite/psicologia , Apendicectomia/métodos , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Adulto Jovem , Laparoscopia/métodos , Entrevistas como Assunto , Idoso , Tomada de Decisão Compartilhada , Atitude Frente a SaúdeRESUMO
This qualitative study examines the impact of scientific, ethical, and translational challenges of precision medicine for atopic dermatitis and psoriasis. The study explores how these challenges affect biomarker research for inflammatory skin diseases as identified by stakeholders, including patient board representatives, pharmaceutical industry partners, and postdoctoral and senior researchers from multiple disciplines in biomarker research. We recruited participating experts both within and associated with the international Biomarkers in Atopic Dermatitis and Psoriasis (BIOMAP) consortium to ensure representation of the different organizational units of the consortium. For the study, we followed the COREQ checklist. The interviews were conducted using GDPR-safe online platforms and the pseudonymized transcripts were analyzed using Atlas.ti. We analyzed the interviews from participants' personal experiences, topic-oriented, and group specific to identify the main themes presented in this article. The findings were presented to peers and to the wider BIOMAP audience, discussed, and a draft was circulated within the consortium for feedback. In this study, we identify and discuss the interrelation of challenges that are relevant to improving precision medicine with multimodal biomarkers. We show how scientific challenges can interrelate with ethical and translational issues, and explain these interdependencies and articulate epistemic and social factors of interdisciplinary collaboration. Based on our findings, we suggest that including patient representatives' perspectives is crucial for highly interrelated and widely diverse research. The proposed integrative perspective is beneficial for all involved stakeholders. Effective communication of science requires reflection on the tension between scientific uncertainty and the goals of precision medicine. Furthermore, we show how changing the perception of the diseases, atopic dermatitis, and psoriasis can benefit patients beyond medical practice.
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BACKGROUND: Digital tools are progressively reshaping the daily work of health care professionals (HCPs) in hospitals. While this transformation holds substantial promise, it leads to frustrating experiences, raising concerns about negative impacts on clinicians' well-being. OBJECTIVE: The goal of this study was to comprehensively explore the lived experiences of HCPs navigating digital tools throughout their daily routines. METHODS: Qualitative in-depth interviews with 52 HCPs representing 24 medical specialties across 14 hospitals in Switzerland were performed. RESULTS: Inductive thematic analysis revealed 4 main themes: digital tool use, workflow and processes, HCPs' experience of care delivery, and digital transformation and management of change. Within these themes, 6 intriguing paradoxes emerged, and we hypothesized that these paradoxes might partly explain the persistence of the challenges facing hospital digitalization: the promise of efficiency and the reality of inefficiency, the shift from face to face to interface, juggling frustration and dedication, the illusion of information access and trust, the complexity and intersection of workflows and care paths, and the opportunities and challenges of shadow IT. CONCLUSIONS: Our study highlights the central importance of acknowledging and considering the experiences of HCPs to support the transformation of health care technology and to avoid or mitigate any potential negative experiences that might arise from digitalization. The viewpoints of HCPs add relevant insights into long-standing informatics problems in health care and may suggest new strategies to follow when tackling future challenges.
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Pesquisa Qualitativa , Humanos , Suíça , Entrevistas como Assunto , Hospitais , Feminino , Masculino , Pessoal de Saúde/psicologia , Fluxo de Trabalho , Atenção à SaúdeRESUMO
INTRODUCTION: Diuresis renography is a nuclear medicine examination that can distinguish between obstructive and non-obstructive uropathy. Renography has been investigated before, but not from a patient perspective. The aim of this study was to gain knowledge and understanding of patient experiences with the diuresis renography process. METHODS: The study had a qualitative descriptive design; data was collected through semi-structured interviews with 17 adult patients that had recently undergone diuresis renography. The transcripts were analysed using inductive qualitative content analysis to identify their manifest and latent content. RESULTS: One main theme was identified: 'Not smooth all the way through, but still in good hands'. The participants understood the necessity of the performed renography and endured the examination despite its worrying elements. They were bothered by diuretic effects, worried about radioactivity and felt isolated during the imaging. The technologists' caring and informative approach eased their experience. The main theme was identified from three subthemes: 'I experienced inconvenience', 'I was worried' and 'I felt safe'. CONCLUSION: The participants experienced worry throughout the renography process but were still satisfied with the examination, mostly because of the technologists being involved. Communication and interaction between patient and technologist are important for creating a good experience. Improved knowledge of patient experiences during renographies could be used to develop patient information and increase technologists' awareness of factors patients may experience as troubling. IMPLICATIONS FOR PRACTICE: This study describes issues that contribute to both negative and positive experiences. Improved professional awareness and knowledge about these issues can contribute to the development of patient information and professional encounters, and may improve patients' compliance and overall experience.
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Pesquisa Qualitativa , Renografia por Radioisótopo , Humanos , Masculino , Feminino , Renografia por Radioisótopo/métodos , Pessoa de Meia-Idade , Adulto , Idoso , Diurese , Entrevistas como Assunto , Satisfação do PacienteRESUMO
Do Adolescents with Substance Use Disorders Recognize and Adopt Self-Regulation from Peers? - A Qualitative Interview Study Self-regulation often plays a central role for adolescents who develop a substance use disorder, as deficits may trigger the onset of the disease. Likewise, the improvement of self-regulation strategies is an important element of many therapy programs. Additionally, peers are important in the development of substance use disorders.The aim of this paper is to investigate the role of self-regulation by other peers in adolescents with substance use disorders through a qualitative interview study. For this purpose, a total of N = 13 (54 % female) adolescents were interviewed using semi-structured interviews, which were then evaluated using a qualitative content analysis according to Mayring.The results showed that the adolescents were familiar with the concept of self-regulation but did not name the interplay between cognitions, emotions, motivation, and behavior within self-regulation. Furthermore, the adolescents reported having observed and adopted both adaptive and maladaptive self-regulation strategies in others, placing the maladaptive strategies retrospectively before the start of therapy, while the adaptive strategies were rather placed during the therapy phase. This might partly explain the effect that peers pose a risk factor for the development of substance use disorders. However, peers might also be considered as a resource in therapeutic settings.
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BACKGROUND: For people with limited lifetime expectancy, the benefit of many medications may be outweighed by their potential harms. Despite the relevance of reducing unnecessary medication use, deprescribing is poorly enacted in primary care practice. AIM: This study aims to describe factors, as identified by primary care professionals and patients, that influence deprescribing in the last phase of life. DESIGN: Semi-structured interviews were conducted and analysed using a thematic approach. SETTING/PARTICIPANTS: This study was performed in primary care settings, including general practices, hospices and community care teams in The Netherlands. Purposefully identified primary care professionals (general practitioners, pharmacists, nurses) and patients with limited lifetime expectancy due to advanced chronic illness or cancer and their caretakers were interviewed. RESULTS: Three themes emerged detailing factors influencing deprescribing in the last phase of life in primary care: (1) non-maleficence, the wish to avoid additional psychological or physical distress; (2) reactive care, the lack of priority and awareness of eligible patients; and (3) discontinuity of care within primary care and between primary care and specialty care. CONCLUSIONS: Deprescribing is an incremental process, complicated by the unpredictability of life expectancy and attitudes of patients and health care professionals that associate continued medication use with clinical stability. Opportunities to facilitate the deprescribing process and its acceptance include the routinely systematic identification of patients with limited life expectancy and potentially inappropriate medications, and normalisation of deprescribing as component of regular primary care, occurring for all patients and continuing into end-of-life care.
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Desprescrições , Atenção Primária à Saúde , Pesquisa Qualitativa , Assistência Terminal , Humanos , Masculino , Feminino , Países Baixos , Idoso , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais , Pessoal de Saúde/psicologia , Adulto , Atitude do Pessoal de Saúde , Entrevistas como AssuntoRESUMO
Background: Tissue engineering is a multidisciplinary field that combines principles from cell biology, bioengineering, material sciences, medicine and surgery to create functional and viable bioproducts that can be used to repair or replace damaged or diseased tissues in the human body. The complexity of tissue engineering can affect the prospects of efficiently translating scientific discoveries in the field into scalable clinical approaches that could benefit patients. Organizational challenges may play a key role in the clinical translation of tissue engineering for the benefit of patients. Methods: To gain insight into the organizational aspects of tissue engineering that may create impediments to efficient clinical translation, we conducted a retrospective qualitative case study of one tissue engineering multi-site translational project on knee cartilage engineered tissue grafts. We collected qualitative data using a set of different methods: semi-structured interviews, documentary research and audio-visual content analysis. Results: Our study identified various challenges associated to first-in-human trials in tissue engineering particularly related to: logistics and communication; research participant recruitment; clinician and medical student participation; study management; and regulation. Conclusions: While not directly generalizable to other types of advanced therapies or to regenerative medicine in general, our results offer valuable insights into organizational barriers that may prevent efficient clinical translation in the field of tissue engineering.
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Background: Chronic bothersome tinnitus is a prevalent tinnitus subtype placing a high burden on affected individuals, economies, and healthcare systems. Patient and professional perspectives seem to be partly misaligned on how to improve tinnitus research and treatments in the future. This qualitative interview study was aimed at exploring, comparing, and stipulating the perspectives of different tinnitus stakeholder groups on ways of redirecting research and treatments to reduce patients' suffering while accounting for challenges within these practices. Methods: This study used the participatory action research approach to facilitate the stakeholder involvement. Semi-structured online interviews including five participants (two tinnitus patients, two tinnitus researchers and medical specialists, one general practitioner) were conducted. Inductive grounded theory and the constant comparative method were used for data analysis. Results: Four categories for suggested research adaptations ((I) ethical patient involvement; (II) prioritising cure versus coping research; (III) funding; (IV) ethical publication) and six categories for suggested treatment adaptations ((I) ethical professional support; (II) patient involvement; (III) interdisciplinarity; (IV) professional tinnitus education; (V) clinical treatment guidelines; (VI) psychological treatment) were identified. Participants held partly similar priorities such as increasing pathophysiological and cure research. Differences between participants included, for instance, patients aiming for increasing patient involvement in tinnitus research and treatments compared to professionals arguing that the excessive focus on patients' conditions might reduce the patients' chances of habituating to their symptoms. Conclusions: Four action redirections for improving tinnitus research and treatment practices were defined: (I) facilitating communication between and within stakeholder groups, (II) increasing the reflective use of patient involvement, (III) increasing interdisciplinarity, and (IV) reducing barriers to receiving psychological treatment.
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BACKGROUND: Advance care planning (ACP) is a process which enables patients to communicate wishes, values, fears, and preferences for future medical care. Despite patient interest in ACP, the frequency of discussions remains low. Barriers to ACP may be mitigated by involving non-physician clinic staff, preparing patients ahead of visits, and using tools to structure visits. An ACP care pathway incorporating these principles was implemented in longitudinal generalist outpatient care, including primary care/family medicine and general internal medicine, in two Canadian provinces. This study aims to understand clinician experiences implementing the pathway. METHODS: The pathway was implemented in one family practice in Alberta, two family practices in British Columbia (BC), and one BC internal medicine outpatient clinic. Physicians and allied health professionals delivered structured pathway visits based on the Serious Illness Conversation Guide. Twelve physicians and one social worker participated in interviews or focus groups at the end of the study period. Qualitative data were coded inductively using an iterative approach, with regular meetings between coders. RESULTS: Clinicians described experiences with the ACP care pathway, impact at the clinician level, and impact at the patient level. Within each domain, clinicians described barriers and facilitators experienced during implementation. Clinicians also reflected candidly about potential for future implementation and the sustainability of the pathway. CONCLUSIONS: While the pathway was implemented slightly differently between provinces, core experiences were that implementation of the pathway, and integration with current practice, were feasible. Across settings, similar themes recurred regarding usefulness of the pathway structure and its tools, impact on clinician confidence and interactions with patients, teamwork and task delegation, compatibility with existing workflow, and patient preparation and readiness. Clinicians were supportive of ACP and of the pathway. TRIAL REGISTRATION: The study was prospectively registered with clinicaltrials.gov (NCT03508557). Registered April 25, 2018. https://classic. CLINICALTRIALS: gov/ct2/show/NCT03508557 .
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Planejamento Antecipado de Cuidados , Pesquisa Qualitativa , Humanos , Colúmbia Britânica , Alberta , Masculino , Feminino , Atitude do Pessoal de Saúde , Grupos Focais , Medicina de Família e Comunidade/organização & administração , Pessoa de Meia-Idade , Adulto , Procedimentos Clínicos/organização & administraçãoRESUMO
The COVID-19 pandemic posed a grave threat not only to Indigenous people's health and well-being, but also to Indigenous communities and societies. This applies also to the Indigenous peoples of the Arctic, where unintentional effects of public health actions to mitigate the spread of virus may have long-lasting effects on vulnerable communities. This study aim was to identify and describe Sámi perspectives on how the Sámi society in Sweden was specifically affected by the pandemic and associated public health actions during 2020-2021. A mixed-method qualitative case study approach was employed, including a media scoping review and stakeholder interviews. The media scoping review included 93 articles, published online or in print, from January 2020 to 1 September 2021, in Swedish or Norwegian, regarding the pandemic-related impacts on Sámi society in Sweden. The review informed a purposeful selection of 15 stakeholder qualitative interviews. Thematic analysis of the articles and interview transcripts generated five subthemes and two main themes: "weathering the storm" and "stressing Sámi culture and society". These reflect social dynamics which highlight stressors towards, and resilience within, the Sámi society during the pandemic. The results may be useful when evaluating and developing public health crisis response plans concerning or affecting the Sámi society in Sweden.
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COVID-19 , Humanos , COVID-19/epidemiologia , Regiões Árticas/epidemiologia , Suécia/epidemiologia , SARS-CoV-2 , Pesquisa Qualitativa , Povos Indígenas/psicologia , Pandemias , Saúde PúblicaRESUMO
BACKGROUND: Female genital mutilation (FGM) is defined as all procedures involving partial or total removal of the external female genitalia, or other injuries to them for non-medical reasons. Due to migration, healthcare providers in high-income countries need to better understand the consequences of FGM. The aim of this study was to elucidate women's experiences of FGM, with particular focus on perceived health consequences and experiences of healthcare received in Sweden. METHODS: A qualitative study was performed through face-to-face, semi-structured interviews with eight women who had experienced FGM in childhood, prior to immigration to Sweden. The transcribed narratives were analyzed using content analysis. RESULTS: Three main categories were identified : "Living with FGM", "Living with lifelong health consequences" and "Encounters with healthcare providers". The participants highlighted the motives behind FGM and their mothers' ambivalence in the decision process. Although the majority of participants had undergone FGM type 3, the most severe type of FGM, the lifelong health consequences were diverse. Poor knowledge about FGM, insulting attitude, and lack of sensitive care were experienced when seeking healthcare in Sweden. CONCLUSIONS: Our findings indicate that FGM is a complex matter causing a diversity in perceived health consequences in women affected. Increased knowledge and awareness about FGM among healthcare providers in Sweden is of utmost importance. Further, this subject needs to be addressed in the healthcare encounter in a professional way.