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1.
Muscle Nerve ; 70(1): 120-129, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38720616

RESUMO

INTRODUCTION/AIMS: To better understand the disease burden faced by individuals with Duchenne muscular dystrophy (DMD) of all ages and elucidate potential targets for therapeutics, this study determined the prevalence and relative importance of symptoms experienced by individuals with DMD and identified factors associated with a higher disease burden. METHODS: We conducted qualitative interviews with individuals with DMD and caregivers of individuals with DMD to identify potential symptoms of importance to those living with DMD. We subsequently performed a cross-sectional study to assess which symptoms have the highest prevalence and importance in DMD and to determine which factors are associated with a higher disease burden. RESULTS: Thirty-nine individuals, aged 11 years and above, provided 3262 quotes regarding the symptomatic burden of DMD. Two hundred participants (87 individuals with DMD and 113 caregivers) participated in a subsequent cross-sectional study. Individuals with DMD identified limitations with mobility or walking (100%), inability to do activities (98.9%), trouble getting around (97.6%), and leg weakness (97.6%) as the most prevalent and life altering symptomatic themes in DMD. The symptomatic themes with the highest prevalence, as reported by caregivers on behalf of those with DMD for whom they care, were limitations with mobility or walking (90.3%), leg weakness (89.2%), and emotional issues (79.6%). Steroid/glucocorticoid use (e.g., prednisone or deflazacort) was associated with a lower level of disease burden in DMD. DISCUSSION: There are many symptomatic themes that contribute to disease burden in individuals with DMD. These symptoms are identified by both individuals with DMD and their caregivers and have a variable level of importance and prevalence in the DMD population.


Assuntos
Cuidadores , Efeitos Psicossociais da Doença , Distrofia Muscular de Duchenne , Humanos , Distrofia Muscular de Duchenne/psicologia , Distrofia Muscular de Duchenne/epidemiologia , Masculino , Criança , Cuidadores/psicologia , Estudos Transversais , Adolescente , Feminino , Adulto , Adulto Jovem , Pessoa de Meia-Idade
2.
Pediatr Blood Cancer ; 71(11): e31253, 2024 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-39126369

RESUMO

BACKGROUND: Many studies highlight poor health-related quality of life (HRQoL) in children treated for brain tumours and their parents. However, little is known about the extent to which their informational, healthcare and communication needs regarding HRQoL are met during medical outpatient consultations. AIM: To explore the experiences of families regarding communication with physicians about HRQoL issues during consultations after treatment for childhood brain tumours. METHODS: Interviews were conducted with 18 families of children and adolescents aged 8-17 years after completion of brain tumour treatment. Participants had completed treatment within the last 5 years and were receiving regular outpatient follow-up care. Thematic analysis was undertaken using the Framework Method. RESULTS: Five main themes were identified: (i) unmet emotional and mental health needs; (ii) double protection; (iii) unmet information needs; (iv) communication barriers within consultations; and (v) finding a new normal. CONCLUSION: There was a need to improve communication between clinicians and these families, improve information provision, and overcome barriers to conversing with children within these outpatient consultations. Children and their parents should be supported to voice their current needs and concerns regarding their HRQoL. These findings will inform further development of the UK version of the 'KLIK' patient- and parent-reported outcome (PROM) portal.


Assuntos
Neoplasias Encefálicas , Barreiras de Comunicação , Pesquisa Qualitativa , Qualidade de Vida , Humanos , Criança , Adolescente , Masculino , Feminino , Neoplasias Encefálicas/psicologia , Neoplasias Encefálicas/terapia , Encaminhamento e Consulta , Pais/psicologia , Necessidades e Demandas de Serviços de Saúde , Adulto , Seguimentos , Família/psicologia , Comunicação
3.
BMC Public Health ; 24(1): 2072, 2024 Jul 31.
Artigo em Inglês | MEDLINE | ID: mdl-39085836

RESUMO

OBJECTIVES: To explore how to reach immigrant women through community agencies to raise awareness of the role of physical activity (PA) in reducing cancer risk. STUDY DESIGN: Qualitative description. METHODS: We conducted semi-structured telephone interviews with immigrant women and community agency managers to discuss the ideal design of an education session on PA and cancer risk, and identified themes using content analysis. RESULTS: Participants included 22 women (6 African or Caribbean Black, 4 Chinese, 3 Filipino, 5 Indian, 4 Pakistani) and 16 agency managers from across Canada. Women were not familiar with Canada's PA guidelines, and few were aware that PA reduces the risk of cancer. All expressed interest in education about PA and cancer. Diverse women and managers expressed similar preferences for education session design including content (e.g. PA amount/type), format (e.g. in person preferred but virtual more practical), personnel (external expert plus agency staff), cultural tailoring (e.g. translated supplemental take home information) and reinforcing (e.g. follow-up with participants) strategies. Women and managers identified few barriers to participating in education sessions, chiefly, that women lacked time due to work and family responsibilities; and noted several enablers of participation (e.g. emphasize social aspect, provide gift cards or recreation centre passes). CONCLUSIONS: We generated insight on the ideal characteristics of a community-based education session that could raise awareness among immigrant women of the importance of PA in reducing cancer risk. Further research is needed to assess the feasibility and impact of PA education sessions designed based on these findings.


Assuntos
Emigrantes e Imigrantes , Exercício Físico , Entrevistas como Assunto , Neoplasias , Pesquisa Qualitativa , Humanos , Feminino , Emigrantes e Imigrantes/psicologia , Adulto , Pessoa de Meia-Idade , Exercício Físico/psicologia , Neoplasias/prevenção & controle , Neoplasias/etnologia , Canadá , Conhecimentos, Atitudes e Prática em Saúde , Educação em Saúde/métodos , Comportamento de Redução do Risco
4.
BMC Health Serv Res ; 24(1): 1065, 2024 Sep 13.
Artigo em Inglês | MEDLINE | ID: mdl-39272124

RESUMO

INTRODUCTION: There is a growing need for alternative forms of care to address citizen demands and ensure a competent healthcare workforce across municipalities and regions. One of these forms of care is the use of mobile care units. The aim of the current study was to describe physicians and nurses experiences of providing care to patients within a mobile care unit in Sweden. METHOD: Data were collected between March 2022 and January 2023 through qualitative interviews with 14 physicians and nurses employed in various mobile care units in different regions in Sweden. These interviews were transcribed verbatim and subjected to content analysis, with the study adhering to the Standards for Reporting Qualitative Research (SRQR). RESULTS: The analysis resulted in two main categories: "Unlocking the potential of mobile care", and "The challenges of moving hospitals to patients' homes"; and seven subcategories. The respondents viewed mobile care at home as highly advantageous, positively impacting both patients and caregivers. They believed their contributions enhanced patients' well-being, fostering a welcoming atmosphere. They also noted receiving more quality time for each patient, enabling thorough assessments, and promoting a person-centered approach, which resulted in more gratifying mutual relationships. However, they experienced that mobile care also had challenges such as geographical limitations, limited opening hours and logistical complexity, which can lead to less equitable and efficient care. CONCLUSIONS: Physicians and nurses in mobile care units emphasized positive outcomes, contributing to patient well-being through a person-centered approach. They highlighted increased quality time, comprehensive assessments, and overall satisfaction, praising the mobile care unit's unique continuity for enhancing safety and fostering meaningful relationships in the patient's home environment. In order for mobile care to develop and become a natural part of healthcare, challenges such as geographical limitations and logistics need to be addressed.


Assuntos
Entrevistas como Assunto , Unidades Móveis de Saúde , Médicos , Pesquisa Qualitativa , Humanos , Suécia , Feminino , Masculino , Adulto , Médicos/psicologia , Pessoa de Meia-Idade , Atitude do Pessoal de Saúde , Enfermeiras e Enfermeiros/psicologia
5.
BMC Health Serv Res ; 24(1): 924, 2024 Aug 13.
Artigo em Inglês | MEDLINE | ID: mdl-39135057

RESUMO

BACKGROUND: A longer duration of untreated psychosis (DUP) is associated with poorer treatment outcomes. Screening for psychosis spectrum disorders in the primary care setting could help support the earlier detection and treatment of individuals in need. However, the acceptability of screening for psychosis in this setting as part of routine care is currently unknown. METHODS: We conducted a qualitative interview study with providers and service users who participated in an early psychosis screening program conducted in an integrated behavioral health primary care (IBH-PC) setting. Interviews were recruited from one of eight WellSpace Federally Qualified Health Center IBH-PC clinics in the Sacramento, CA area. Transcripts of the recorded interviews were analyzed using thematic analysis. RESULTS: In total, 12 providers and eight service users participated in the interviews. Most service user and provider participants were supportive of psychosis screening in an IBH-PC setting, but not as part of the general practitioner consultation due to the brief, non-behavioral health nature of many of the appointments, and the expected low prevalence of psychosis in this population. The support of leadership, adequate training and support, staff turnover, and organizational changes were all seen to impact the successful implementation of the program. Different barriers and facilitators were considered important at each stage of the process from introducing the screening procedures to service users; to determining when, where, and how to screen; and how to effectively manage the referral and post-referral stages. CONCLUSIONS: Despite the additional challenges of screening in an IBH-PC setting relative to secondary mental health services, the process was considered acceptable and feasible to providers and service users. Services that plan to conduct psychosis screening in their clinics need to consider the challenges and their potential solutions to implementation at each stage of the screening process.


Assuntos
Programas de Rastreamento , Atenção Primária à Saúde , Transtornos Psicóticos , Pesquisa Qualitativa , Humanos , Transtornos Psicóticos/diagnóstico , Transtornos Psicóticos/terapia , Masculino , Feminino , Adulto , Programas de Rastreamento/métodos , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Entrevistas como Assunto , Pessoa de Meia-Idade , Prestação Integrada de Cuidados de Saúde/organização & administração , Serviços de Saúde Mental/organização & administração , Atitude do Pessoal de Saúde
6.
BMC Health Serv Res ; 24(1): 545, 2024 Apr 29.
Artigo em Inglês | MEDLINE | ID: mdl-38684997

RESUMO

BACKGROUND: Home visiting programmes aiming to support parents and promote more equal health amongst young children have grown in Sweden and in other countries. These programmes involve interprofessional teams. Teamwork in interprofessional contexts often requires setting boundaries, but professionals' boundary work in the home setting is unexplored. Therefore, this article focuses on interprofessional teams comprising child healthcare nurses, midwives, social workers, and dental hygienists in a home visiting programme for first-time parents in Sweden; it aims to explore how the professionals performed boundary work that enabled collaboration and to investigate important contextual conditions for this kind of boundary work. METHODS: The data were drawn from semi-structured interviews with twelve professionals from the four different disciplines. Content analysis was used to explore their boundary work. RESULTS: The findings show that the professionals performed three forms of collaborative boundary work. They maintained boundaries by clarifying their distinct roles and expertise. However, the differences were viewed as complementary, and the professionals worked together humbly to complement each other's knowledge and perspectives. Lastly, they tended to drop perceptions of prestige and blurred the boundaries to accommodate their overlapping knowledge. Important conditions for the success of collaborative boundary work were meetings prior to the home visits, the opportunities for discussion and reflection after the home visits, and the informal character of the home setting. Consequently, the professionals were able to jointly contribute to a holistic view of the visited families, which increased the possibilities to meet these families' needs. CONCLUSIONS: This study contributes knowledge on boundary work in interprofessional collaborations in the home setting. The informal character of the home setting seemed to facilitate collaboration and contributed to creating informal professional roles. The findings suggest that having interprofessional teams in the home setting enabled collaboration as well as reinforced support for first-time parents, which emphasizes the merit of home visit programmes.


Assuntos
Comportamento Cooperativo , Visita Domiciliar , Relações Interprofissionais , Pais , Humanos , Suécia , Pais/psicologia , Feminino , Entrevistas como Assunto , Masculino , Equipe de Assistência ao Paciente/organização & administração , Pesquisa Qualitativa , Adulto
7.
BMC Health Serv Res ; 24(1): 272, 2024 Mar 04.
Artigo em Inglês | MEDLINE | ID: mdl-38439061

RESUMO

BACKGROUND: People with cancer have high information needs; however, they are often inadequately met. Patient versions of clinical practice guidelines (PVGs), a special form of evidence-based information, translate patient-relevant recommendations from clinical practice guidelines into lay language. To date, little is known about the experience of PVGs from healthcare providers' perspective in healthcare. This study aims to investigate the use, applicability, and dissemination of PVGs in oncology from the healthcare providers' perspective in Germany. METHODS: Twenty semi-structured telephone interviews were conducted with oncological healthcare providers in Germany between October and December 2021. Interviews were recorded and transcribed verbatim. Mayring's qualitative content analysis with MAXQDA software was utilised to analyse the data. RESULTS: A total of 20 healthcare providers (14 female, 6 male), mainly working as psychotherapists/psycho-oncologists and physicians, participated. Most participants (75%) were aware of the existence of PVGs. The content was predominantly perceived as comprehensible and relevant, whereas opinions on the design and format were mixed. The perceived lack of up-to-date information limited participants' trust in the content. Most felt that PVGs positively impact healthcare owing to the fact that they improve patients' knowledge about their disease. Additionally, PVGs served as a guide and helped healthcare providers structure physician-patient talks. Healthcare provider's unawareness of the existence of PVGs was cited as an obstructive factor to its dissemination to patients. CONCLUSION: Limited knowledge of the existence of PVGs among healthcare providers, coupled with alternative patient information, hinders the use and dissemination of PVGs in healthcare. However, the applicability of PVGs seemed to be acceptable owing to their content and good comprehensibility, especially with respect to physician-patient communication.


Assuntos
Pessoal de Saúde , Médicos , Humanos , Feminino , Masculino , Oncologia , Alemanha , Conscientização
8.
BMC Health Serv Res ; 24(1): 1139, 2024 Sep 27.
Artigo em Inglês | MEDLINE | ID: mdl-39334375

RESUMO

BACKGROUND: Ambulatory access to academic medical centers (AMCs) for patients insured with Medi-Cal (i.e., Medicaid in California) is understudied, particularly among the 85% of beneficiaries enrolled in managed care plans. As more AMCs develop partnerships with these plans, data on patient experiences of access to care and quality are needed to guide patient-centered improvements in care delivery. METHODS: The authors conducted semi-structured, qualitative interviews with Medi-Cal-insured patients with initial visits at a large, urban AMC during 2022. Participant recruitment was informed by a database of ambulatory Medi-Cal encounters. The interview guide covered Medi-Cal enrollment, scheduling, and visit experience. Interviews were transcribed and inductively coded, then organized into themes across four domains: access, affordability, patient-provider interactions, and continuity. RESULTS: Twenty participant interviews were completed (55% female, 85% English speaking, 80% self-identified minority or "other" race, and 30% Hispanic or Latino) with primary and/or specialty care visits. Within the access domain, participants reported delays with Medi-Cal enrollment and access to specialist care or testing, though appointment scheduling was reported to be easy. Affordability concerns included out-of-pocket medical and parking costs, and missed income when patients or families skipped work to facilitate care coordination. Participants considered clear, bilateral communication with providers fundamental to positive patient-provider interactions. Some participants perceived discrimination by providers based on their insurance status. Participants valued continuity, but experienced frustration arising from frequent and unexpected health plan changes that disrupted care with their established AMC providers. CONCLUSIONS: The missions of AMCs typically focus on clinical care, education, research, and equity. However, reports from Medi-Cal insured patients receiving care at AMCs highlight their stress and confusion related to inconsistent provider access, uncompensated costs, variability in perceptions of quality, and fragmented care. Recommendations based upon patient-reported concerns suggest opportunities for AMC health system-level improvements that are compatible with AMC missions.


Assuntos
Centros Médicos Acadêmicos , Assistência Ambulatorial , Acessibilidade aos Serviços de Saúde , Entrevistas como Assunto , Medicaid , Pesquisa Qualitativa , Humanos , Masculino , Feminino , Estados Unidos , Pessoa de Meia-Idade , Adulto , California
9.
BMC Palliat Care ; 23(1): 241, 2024 Oct 10.
Artigo em Inglês | MEDLINE | ID: mdl-39390487

RESUMO

BACKGROUND: At present, there are no specific guidelines for the treatment of diabetes in palliative care in Norway. The aim of this study was therefore to explore healthcare professionals' experiences of providing palliative care to individuals with diabetes in specialist as well as primary care settings. METHODS: We interviewed 12 healthcare professionals from two palliative care units in specialist healthcare, one hospice unit in a nursing home, and one dietary care unit providing counselling in the municipality in the eastern part of Norway. Thematic analysis was used to analyze the data. RESULTS: Our analysis generated three main themes: 1) "Quality of life is the main focus", which showed that the healthcare professionals' main focus was on comforting patients through engagement and communication; 2) "An individualized approach", emphasizing that the treatment was tailored to the unique circumstances of each individual and considered factors such as life expectancy, difficult blood glucose control, and multidisciplinary collaboration, and 3) "Diabetes in the background", which highlighted that they had a modest focus on diabetes. Diabetes was seen as another aspect of health that they had to be aware of, but their limited knowledge of diabetes guidelines, technical tools, and treatment choices underscored that attentiveness to the diabetes treatment was not prominent. CONCLUSION: The findings show that a lack of guidelines allowed for diverse approaches to the treatment of patients with diabetes in palliative care. Attentiveness to diabetes was based on the individual healthcare professionals' experience and expertise, professional views, and the circumstances of each individual.


Assuntos
Diabetes Mellitus , Pessoal de Saúde , Cuidados Paliativos , Pesquisa Qualitativa , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Masculino , Noruega , Feminino , Diabetes Mellitus/terapia , Diabetes Mellitus/psicologia , Pessoal de Saúde/psicologia , Pessoa de Meia-Idade , Adulto , Qualidade de Vida/psicologia , Atitude do Pessoal de Saúde , Entrevistas como Assunto/métodos
10.
Cult Health Sex ; : 1-15, 2024 Jul 23.
Artigo em Inglês | MEDLINE | ID: mdl-39041302

RESUMO

Mothers living with HIV are faced with managing their own complex healthcare and wellness needs while caring for their children. Understanding the lived experiences of mothers living with HIV, including grandmothers and mothers with older children - who are less explicitly represented in existing literature, may guide the development of interventions that best support them and their families. This study sought to explore the role of motherhood and related social/structural factors on engagement with HIV care, treatment-seeking behaviour, and overall HIV management among mothers living with HIV in the USA to inform such efforts. Semi-structured interviews were conducted between June and December 2015 with 52 mothers living with HIV, recruited from the Women's Interagency HIV Study (WIHS) sites in four US cities. Five broad themes were identified from the interviews: children as a motivation for optimal HIV management; children as providing logistical support for HIV care and treatment; the importance of social support for mothers; stressors tied to responsibilities of motherhood; and stigma about being a mother living with HIV. Findings underscore the importance of considering the demands of motherhood when developing more effective strategies to support mothers in managing HIV and promoting the overall health and well-being of their families.

11.
J Med Internet Res ; 26: e56500, 2024 Aug 21.
Artigo em Inglês | MEDLINE | ID: mdl-39167785

RESUMO

BACKGROUND: Large language models including GPT-4 (OpenAI) have opened new avenues in health care and qualitative research. Traditional qualitative methods are time-consuming and require expertise to capture nuance. Although large language models have demonstrated enhanced contextual understanding and inferencing compared with traditional natural language processing, their performance in qualitative analysis versus that of humans remains unexplored. OBJECTIVE: We evaluated the effectiveness of GPT-4 versus human researchers in qualitative analysis of interviews with patients with adult-acquired buried penis (AABP). METHODS: Qualitative data were obtained from semistructured interviews with 20 patients with AABP. Human analysis involved a structured 3-stage process-initial observations, line-by-line coding, and consensus discussions to refine themes. In contrast, artificial intelligence (AI) analysis with GPT-4 underwent two phases: (1) a naïve phase, where GPT-4 outputs were independently evaluated by a blinded reviewer to identify themes and subthemes and (2) a comparison phase, where AI-generated themes were compared with human-identified themes to assess agreement. We used a general qualitative description approach. RESULTS: The study population (N=20) comprised predominantly White (17/20, 85%), married (12/20, 60%), heterosexual (19/20, 95%) men, with a mean age of 58.8 years and BMI of 41.1 kg/m2. Human qualitative analysis identified "urinary issues" in 95% (19/20) and GPT-4 in 75% (15/20) of interviews, with the subtheme "spray or stream" noted in 60% (12/20) and 35% (7/20), respectively. "Sexual issues" were prominent (19/20, 95% humans vs 16/20, 80% GPT-4), although humans identified a wider range of subthemes, including "pain with sex or masturbation" (7/20, 35%) and "difficulty with sex or masturbation" (4/20, 20%). Both analyses similarly highlighted "mental health issues" (11/20, 55%, both), although humans coded "depression" more frequently (10/20, 50% humans vs 4/20, 20% GPT-4). Humans frequently cited "issues using public restrooms" (12/20, 60%) as impacting social life, whereas GPT-4 emphasized "struggles with romantic relationships" (9/20, 45%). "Hygiene issues" were consistently recognized (14/20, 70% humans vs 13/20, 65% GPT-4). Humans uniquely identified "contributing factors" as a theme in all interviews. There was moderate agreement between human and GPT-4 coding (κ=0.401). Reliability assessments of GPT-4's analyses showed consistent coding for themes including "body image struggles," "chronic pain" (10/10, 100%), and "depression" (9/10, 90%). Other themes like "motivation for surgery" and "weight challenges" were reliably coded (8/10, 80%), while less frequent themes were variably identified across multiple iterations. CONCLUSIONS: Large language models including GPT-4 can effectively identify key themes in analyzing qualitative health care data, showing moderate agreement with human analysis. While human analysis provided a richer diversity of subthemes, the consistency of AI suggests its use as a complementary tool in qualitative research. With AI rapidly advancing, future studies should iterate analyses and circumvent token limitations by segmenting data, furthering the breadth and depth of large language model-driven qualitative analyses.


Assuntos
Pesquisa Qualitativa , Humanos , Masculino , Adulto , Pessoa de Meia-Idade , Análise de Dados , Pesquisadores/psicologia , Pesquisadores/estatística & dados numéricos , Idoso
12.
Risk Anal ; 44(3): 521-535, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37350030

RESUMO

Microplastics are receiving growing attention in the public debate, while the scientific assessment of risks of microplastics to ecological and human health is still ongoing. Previous studies suggest concerns among the general public with country-specific differences. However, little is known about the reasoning underlying these concerns. By conducting qualitative interviews with German (n = 15) and Italian citizens (n = 15), this study adopted a cross-national perspective to investigate which concepts shape citizens' perceptions of microplastics. A qualitative content analysis was used, with coding categories and subcategories developed inductively. Results showed that interviewees formed assumptions around microplastics despite own uncertainties, transferred knowledge from macro- to microplastics, and used the concepts of accumulation and dose-response relationship to make sense of the topic. Moreover, they saw the domains of human health and the environment as intertwined and expressed helplessness when discussing solutions to the microplastics issue. Many themes on the topic were similar in both samples, but there were also some differences. For instance, whereas Italian participants talked about marine-related microplastics, German participants talked about airborne sources; also, German participants tended to recognize more strongly the actions their country was putting in place to address the problem. These findings underscore the need for proactive risk communication despite remaining gaps in scientific risk assessment. Beyond providing technical information, communicators should consider the reasoning behind risk perception on microplastics and address scientific uncertainty as well as the interconnectedness between the domains of human health and the environment.


Assuntos
Microplásticos , Plásticos , Humanos , Comunicação , Pesquisa Qualitativa , Itália
13.
BMC Med Inform Decis Mak ; 24(1): 302, 2024 Oct 12.
Artigo em Inglês | MEDLINE | ID: mdl-39395970

RESUMO

BACKGROUND: Outcome measures are crucial to support a treat-to-target approach to rheumatoid arthritis (RA) care, yet their integration into clinical practice remains inconsistent. We developed an Electronic Heath Record-integrated, patient-facing side-car application to display RA outcomes (disease activity, functional status, pain scores), medications, and lab results during clinical visits ("RA PRO Dashboard"). The study aimed to evaluate patient perceptions and attitudes towards the implementation of a novel patient-facing dashboard during clinical visits using a mixed-methods approach. METHODS: RA patients whose clinicians used the dashboard at least once during their clinical visit were invited to complete a survey regarding its usefulness in care. We also conducted semi-structured interviews with a subset of patients to assess their perceptions of the dashboard. The interviews were transcribed verbatim and analyzed thematically using deductive and inductive techniques. Emerging themes and subthemes were organized into four domains of the Ecological Model of Health. RESULTS: Out of 173 survey respondents, 79% were interested in seeing the dashboard again at a future visit, 71% felt it improved their understanding of their disease, and 65% believed it helped with decision-making about their RA care. Many patients reported that the dashboard helped them discuss their RA symptoms (76%) and medications (72%) with their clinician. Interviews with 29 RA patients revealed 10 key themes: the dashboard was perceived as a valuable visual tool that improved patients' understanding of RA outcome measures, enhanced their involvement in care, and increased their trust in clinicians and the clinic. Common reported limitations included concerns about reliability of RA outcome questionnaires for some RA patients and inconsistent collection and explanation of these measures by clinicians. CONCLUSIONS: In both the quantitative and qualitative components of the study, patients reported that the dashboard improved their understanding of their RA, enhanced patient-clinician communication, supported shared decision-making, and increased patient engagement in care. These findings support the use of dashboards or similar data visualization tools in RA care and can be used in future interventions to address challenges in data collection and patient education.


Assuntos
Artrite Reumatoide , Registros Eletrônicos de Saúde , Humanos , Artrite Reumatoide/terapia , Feminino , Masculino , Pessoa de Meia-Idade , Idoso , Adulto , Pesquisa Qualitativa , Avaliação de Resultados em Cuidados de Saúde
14.
J Res Adolesc ; 34(3): 1078-1098, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-38750409

RESUMO

Adolescents' supportive relationships with nonparental adults are beneficial when they are close and have trust, but few studies explore how adolescents believe closeness and trust unfold over time. I propose a method for prompting adolescents to retrospectively describe the development of abstract components of such relationships by sharing a study that used interviewee-created graphing to prompt adolescents to move from concrete parts of the relationship to abstract concepts using a tool adolescents would be familiar with from math classes. Analyses using Venn diagrams and matrices suggested adolescents conceptualized closeness and trust differently, however, this was shaped by whether the adult was a part of their family. Reflections on how the proposed graphing method can effectively be used will be discussed.


Assuntos
Confiança , Humanos , Adolescente , Confiança/psicologia , Feminino , Masculino , Relações Interpessoais , Adulto , Comportamento do Adolescente/psicologia , Estudos Retrospectivos
15.
Harm Reduct J ; 21(1): 68, 2024 03 25.
Artigo em Inglês | MEDLINE | ID: mdl-38528531

RESUMO

BACKGROUND: Long-acting injectable depot buprenorphine may increase access to opioid agonist treatment (OAT) for patients with opioid use disorder in different treatment phases. The aim of this study was to explore the experiences of depot buprenorphine among Swedish patients with ongoing substance use and multiple psychiatric comorbidities. METHOD: Semi-structured qualitative interviews were conducted with OAT patients with experience of depot buprenorphine. Recruitment took place at two OAT clinics with a harm reduction focus, specializing in the treatment of patients with ongoing substance use and multiple comorbidities. Nineteen participants were included, 12 men and seven women, with a mean age of 41 years (range 24-56 years), and a mean of 21 years (5-35 years) of experience with illicit substance use. All participants had ongoing substance use and psychiatric comorbidities such as ADHD, anxiety, mood, psychotic and eating disorders. Interviews were transcribed verbatim. Thematic content analysis was conducted both manually and using qualitative data analysis software. RESULTS: Participants reported social benefits and positive changes in self-perception and identity. In particular, depot buprenorphine contributed to a realization that it was possible to make life changes and engage in activities not related to substance use. Another positive aspect that emerged from the interviews was a noticeable relief from perceived pressure to divert OAT medication, while some expressed the lack of income from diverted oral/sublingual OAT medication as a negative, but still acceptable, consequence of the depot buprenorphine. Many participants considered that the information provided prior to starting depot buprenorphine was insufficient. Also, not all patients found depot buprenorphine suitable, and those who experienced coercion exhibited particularly negative attitudes towards the medication. CONCLUSIONS: OAT patients with ongoing substance use and multiple psychiatric comorbidities reported clear benefits of depot buprenorphine, including changes in self-perception which has been theorized to play an important role in recovery. Clinicians should consider the specific information needs of this population and the extensive diversion of traditional OAT medications in this population to improve the treatment experience and outcomes. Overall, depot buprenorphine is a valuable treatment option for a population in need of harm reduction and may also contribute to psychological changes that may facilitate recovery in those with the greatest need.


Assuntos
Buprenorfina , Transtornos Relacionados ao Uso de Opioides , Masculino , Humanos , Feminino , Adulto Jovem , Adulto , Pessoa de Meia-Idade , Buprenorfina/uso terapêutico , Tratamento de Substituição de Opiáceos/métodos , Redução do Dano , Transtornos Relacionados ao Uso de Opioides/complicações , Transtornos Relacionados ao Uso de Opioides/tratamento farmacológico , Transtornos Relacionados ao Uso de Opioides/epidemiologia , Pesquisa Qualitativa , Analgésicos Opioides/uso terapêutico
16.
BMC Med Educ ; 24(1): 562, 2024 May 23.
Artigo em Inglês | MEDLINE | ID: mdl-38783242

RESUMO

BACKGROUND: Care coordination has been identified as one of five focuses of HealthierSG. Family medicine residents are expected to collaborate with other healthcare professionals for complex patients by the end of residency. However, many residents felt that it was challenging to coordinate care effectively among healthcare stakeholders. However, to date, no qualitative studies have explored these challenges. Therefore, this study aimed to understand the challenges encountered by family medicine residents when coordinating care for complex patients. METHODS: This was a qualitative descriptive study in which semi structured in-depth interviews were conducted and guided by a topic guide. Total population sampling of 15 third-year family medicine residents in the National Healthcare Group Polyclinics was performed. The interviews were performed over Zoom and were transcribed. Thematic analysis was subsequently performed to analyse the transcripts. Coding was performed iteratively by two independent researchers. Disagreements were adjudicated by a third coder. A coding framework was agreed upon. Potential themes were then independently developed based on the coding framework. RESULTS: Six themes emerged from the data, namely, interprofessional communications, accessibility, personal knowledge, time constraints, patient factors and caregiver dissent. CONCLUSION: Challenges faced by family medicine residents are multifaceted. While a few are systemic and pertain to the broader healthcare framework, others, such as issues of unfamiliarity with institutional workflows, community resources, and confidentiality, pertain to the microcosm of residency itself. These are reversible areas for improvement. These challenges can be addressed during planning of residency curricula to better equip family medicine residents with coordinating care for complex patients in the future.


Assuntos
Medicina de Família e Comunidade , Internato e Residência , Pesquisa Qualitativa , Humanos , Medicina de Família e Comunidade/educação , Feminino , Masculino , Adulto , Instituições de Assistência Ambulatorial/organização & administração , Atitude do Pessoal de Saúde , Entrevistas como Assunto , Relações Interprofissionais
17.
Qual Health Res ; 34(8-9): 842-852, 2024 07.
Artigo em Inglês | MEDLINE | ID: mdl-38227892

RESUMO

This qualitative study consisted of in-depth, retrospective interviews with participants over the age of 18 who experienced child sexual abuse. Through narrative analysis, study findings shed light on three overall findings: the perception of memories, the perception of grooming, and the perception of the lived lives of child sexual abuse survivors. Findings suggest that the narratives elicited from the participants included current views but also past experiences and anticipation about the future, including individual and societal levels of meaning. These narratives are furthermore entangled and inexorably linked - temporally, culturally, generationally, materially, and emotionally - and the results are thus presented from a holistic perspective. Study findings help explain the complex dimensions concerning the lived experiences of child sexual abuse. As such, this research speaks to the field of social and health care practitioners working with children and families facing the complex phenomenon of child sexual abuse.


Assuntos
Abuso Sexual na Infância , Narração , Pesquisa Qualitativa , Humanos , Feminino , Abuso Sexual na Infância/psicologia , Masculino , Criança , Adulto , Adolescente , Entrevistas como Assunto , Pessoa de Meia-Idade , Estudos Retrospectivos , Adulto Jovem , Sobreviventes Adultos de Maus-Tratos Infantis/psicologia
18.
Clin Psychol Psychother ; 31(4): e3033, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39089290

RESUMO

Cognitive behaviour therapy for psychosis (CBTp) should be offered to patients receiving psychiatric inpatient care, yet very little is known about patients' perspectives on this. The aim of this study was to examine patients' experiences of a CBTp-informed intervention delivered in inpatient settings. We recruited 10 participants from the intervention arm of a randomised controlled trial examining the feasibility and acceptability of a CBTp-informed intervention for psychiatric inpatient settings. We undertook semistructured interviews examining their experiences of the intervention and analysed them using thematic analysis. The study was conducted in partnership with a coproduction group of key stakeholders (people with lived experience, family and carers, and clinicians). The intervention was found helpful by almost all participants, and all participants would recommend it to others in similar situations to themselves. The results demonstrated that participants valued the therapist's professionalism and emphasised the importance of the therapeutic relationship. Participants highlighted the importance of the therapy focusing on navigating admission and developing skills to manage the crisis experience so they could return to their normal lives. Participants described challenges to having psychological therapy in the acute crisis context including therapy interruptions and ongoing distressing experiences of psychosis. The study demonstrated the importance of prioritising the therapeutic relationship, that therapy was a valued process to navigate admission and discharge, but that some environmental and patient-level challenges were present. Further research is needed to explore inpatients' experiences of psychological interventions in this setting. TRIAL REGISTRATION: ISRCTN trial registry: ISRCTN59055607.


Assuntos
Terapia Cognitivo-Comportamental , Intervenção em Crise , Pacientes Internados , Transtornos Psicóticos , Pesquisa Qualitativa , Humanos , Transtornos Psicóticos/terapia , Transtornos Psicóticos/psicologia , Feminino , Masculino , Terapia Cognitivo-Comportamental/métodos , Adulto , Intervenção em Crise/métodos , Pessoa de Meia-Idade , Pacientes Internados/psicologia , Satisfação do Paciente/estatística & dados numéricos
19.
Z Gerontol Geriatr ; 57(2): 127-132, 2024 Mar.
Artigo em Alemão | MEDLINE | ID: mdl-37160421

RESUMO

BACKGROUND: Previous research on retirement adjustment has been dominated by quantitative studies on the development of different indicators for adjustment success. In contrast, there is a lack of qualitative studies examining the subjective experiences of retirees in their adjustment process to the new life phase. OBJECTIVE: The article deals with the subjective adjustment experiences of persons whose regular retirement was about 1 year ago. It focuses on experienced habituation requirements and subjectively relevant factors of life satisfaction. MATERIAL AND METHODS: The findings are based on qualitative interview data from a more comprehensive mixed methods study conducted between 2019 and 2022 in the German-speaking part of Switzerland. In the course of the study, 25 semi-structured interviews were carried out and analyzed using qualitative content analysis. RESULTS: Entering the new life phase was predominately experienced positively, which was mainly associated with a gain in freedom and opportunities for regeneration; however, the time after retirement also entailed habituation requirements in different areas of life. Life satisfaction increased compared to the initial survey before retirement and was associated with various beneficial and critical factors, ranging from personal characteristics to social developments. CONCLUSION: Retirement itself is not necessarily a critical experience but can be accompanied by other critical events. A satisfactory life 1 year after retirement is linked to multiple factors. Among these, resources play an essential role.


Assuntos
Satisfação Pessoal , Aposentadoria , Humanos , Suíça
20.
Br J Nurs ; 33(4): 168-174, 2024 Feb 22.
Artigo em Inglês | MEDLINE | ID: mdl-38386533

RESUMO

BACKGROUND: One in four women experience urinary incontinence. A woman's medical history, a physical examination and certain tests can guide specialists in diagnosing and offering treatment. Despite the high prevalence, little is known about women's experience of urinary incontinence assessment. AIM: To explore the experience of a group of women undergoing an assessment for urinary incontinence. METHODS: Individual semi-structured interviews were conducted with 10 women who had been assessed for urinary incontinence. A thematic reflective analysis method was used. FINDINGS: The women experienced a lot of shame and worry related to their urinary incontinence and the assessment. Having a safe relationship with the urotherapist was very important, and being given information about treatment options gave hope for a better life. CONCLUSION: Urinary incontinence and its assessment are associated with shame and anxiety. A good patient-urotherapist relationship is paramount and learning that treatments are available made women feel more optimistic about the future.


Assuntos
Incontinência Urinária , Humanos , Feminino , Incontinência Urinária/diagnóstico , Incontinência Urinária/terapia , Pesquisa Qualitativa , Ansiedade/diagnóstico , Aprendizagem , Prevalência
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