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Genomics researchers are increasingly interested in what constitutes effective engagement of individuals from underrepresented groups. This is critical for longitudinal projects needed to inform the implementation of precision medicine. Return of results is one opportunity for engagement. The aims of this study were to determine participant perspectives on optimal engagement strategies and priorities for return of results and the extent to which focus groups were an effective modality for gathering input on these topics. We conducted six professionally moderated focus groups with 49 participants in a genomics research study. Transcripts from audio-recorded sessions were coded by two researchers and themes were discussed with the wider research team. All groups raised the issue of mistrust. Individuals participated nonetheless to contribute their perspectives and benefit their community. Many group members preferred engagement modalities that are offered to all participants and allow them to share the nuances of their perspectives over the use of participant representatives and surveys. All groups created a consensus ranking for result return priorities. Results for life-threatening conditions were the highest priority to return, followed by those related to treatable conditions that affect physical or mental health. We advocate for engagement strategies that reach as many participants as possible and allow them to share their perspectives in detail. Such strategies are valued by participants, can be effective for developing return of results policies, and may help institutions become more trustworthy.
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Negro o Afroamericano/genética , Negro o Afroamericano/psicología , Genoma Humano/genética , Genómica/métodos , Participación del Paciente , Anciano , Estudios de Cohortes , Femenino , Humanos , Masculino , Persona de Mediana Edad , Motivación , ConfianzaRESUMEN
BACKGROUND: The BREAST-Q real-time engagement and communication tool (REACT) was developed to aid with BREAST-Q score interpretation and guide patient-centered care. OBJECTIVE: The purpose of this qualitative study was to examine the perspectives of patients and providers on the design, functionality, and clinical utility of REACT and refine the REACT based on their recommendations. METHODS: We conducted three patient focus groups with women who were at least 6 postoperative months from their postmastectomy breast reconstruction, and two provider focus groups with plastic surgeons, breast surgeons, and advanced practice providers. Focus groups were audio-taped, transcribed verbatim, and analyzed thematically. RESULTS: A total of 18 breast reconstruction patients and 14 providers participated in the focus groups. Themes identified by thematic analysis were organized into two categories: (1) design and functionality, and (2) clinical utility. On the design and functionality of REACT, four major themes were identified: visual appeal and usefulness; contextualizing results; ability to normalize patients' experiences, noting participants' concerns; and suggested modifications. On the clinical utility of REACT, three major themes were identified: potential to empower patients to communicate with their providers; increase patient and provider motivation to engage with the BREAST-Q; and effective integration into clinical workflow. CONCLUSION: Patients and providers in this qualitative study indicated that with some modifications, REACT has a great potential to elevate the clinical utility of the BREAST-Q by enhancing patient-provider communication that can lead to patient-centered, clinically relevant action recommendations based on longitudinal BREAST-Q scores.
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Neoplasias de la Mama , Grupos Focales , Mamoplastia , Mastectomía , Atención Dirigida al Paciente , Investigación Cualitativa , Humanos , Femenino , Neoplasias de la Mama/cirugía , Neoplasias de la Mama/psicología , Persona de Mediana Edad , Mastectomía/psicología , Mamoplastia/psicología , Mamoplastia/métodos , Comunicación , Relaciones Médico-Paciente , Adulto , Pronóstico , Estudios de Seguimiento , Anciano , Participación del Paciente , Satisfacción del PacienteRESUMEN
BACKGROUND: Engagement in before-school physical activity can potentially enhance health and learning-related outcomes for children and adolescents. However, influencing factors and stakeholder perceptions of before-school physical activity remain under-researched. This qualitative study aimed to examine stakeholder perceptions of: a) the suitability of the before-school segment for physical activity, b) barriers and facilitators associated with before-school physical activity, and c) strategies for schools to support before-school physical activity. METHODS: Twelve focus groups and one interview were conducted with 38 participants from a range of school stakeholder groups-students, parents, teachers, school leaders, external physical activity providers, and school health and physical activity experts. Focus groups were analysed using template analysis, guided by a social-ecological model. RESULTS: Stakeholders perceived before-school physical activity as valuable, for reasons including perceptions of meaningful contributions to students' cognitive functioning, classroom behaviours, and wellbeing. Factors influencing before-school physical activity were identified across multiple social-ecological levels, including the critical role of school leadership support, availability of facilities, and provision of qualified supervision. Proposed strategies highlighted the need for sustainable design, contextual relevance, and community engagement in before-school initiatives. Additionally, communication of the manifold benefits identified by stakeholders was suggested as a means to drive support and engagement in before-school physical activity. CONCLUSIONS: This study provides insight for schools seeking to enhance opportunities for physical activity in the before-school hours and may inform future intervention research on the subject, taking into account its multi-faceted influences and the need for context-specific strategies.
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Ejercicio Físico , Instituciones Académicas , Niño , Adolescente , Humanos , Ejercicio Físico/psicología , Grupos Focales , Investigación Cualitativa , Estudiantes/psicologíaRESUMEN
BACKGROUND: Children treated with stem cell transplant (SCT) are routinely hospitalized for long periods where they are exposed to significant sleep and circadian disruptions. As nurses play a primary role in symptom management during SCT, we sought to understand their perspective on patient sleep and circadian disruptions, perceived barriers to a good sleep and circadian environment, and suggestions for improvement. PROCEDURE: Four focus groups were conducted with pediatric SCT nurses (N = 25 participants). A semistructured focus group guide was administered, with the discussions recorded and transcribed. A multistage thematic analysis combining prefigured and emergent dimensions was conducted. Our analysis focused on drawing comparisons within and across focus groups to understand the unique work experiences that participants had related to the patient's sleep and circadian environment. RESULTS: Three key themes emerged. First, nurses expressed a high awareness of how disruptive the hospital environment is for patients. Second, nurses described their extensive efforts to try to minimize the impact of these disruptions. Finally, they provided clear recommendations for how to improve upon these concerns, along with barriers that they perceive could impede implementation. CONCLUSIONS: Front-line caregivers on a pediatric SCT unit describe key contributors to sleep/circadian disturbances for patients. Within the constraints of the considerable medical needs of this patient population and the physical room/hospital environment, nurses strive to minimize these disruptions to the best of their ability. It is crucial that hospitals assess and remediate these disturbances for these children that have important implications for overall health.
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Pacientes Internos , Sueño , Humanos , Niño , Grupos Focales , Cuidadores , HospitalesRESUMEN
BACKGROUND: The concept of collaborative approaches involves community residents in joint decision-making processes to maintain or enhance their material and social conditions. During COVID-19, public services saw the benefits of actively collaborating with communities and involving residents in decision-making processes. As communities have resources and assets, they are well-placed to contribute to developing local health and wellbeing initiatives. An interdisciplinary and nationally funded three-phase research programme, "Mobilising community assets to tackle health inequalities", was established with the objective of utilising local, cultural, and natural assets to support health and wellbeing. The current study aimed to synthesise evidence collected by research teams awarded funding in phase one of the programme, comprising academic and non-academic, health and social care, voluntary and community partners. METHODS: Ten online focus groups were conducted with research teams from across the UK exploring the successes and challenges of partnership working to tackle health inequalities using collaborative approaches to community-based research. Eight focus group questions were split between partnership working and health inequalities. RESULTS: Thematic and content analysis produced 185 subthemes from which 12 themes were identified. Major themes representing an above average number of coded responses were research evidence; funding; relationships with partners; health inequalities and deprivation; community involvement; and health service and integrated care systems. Minor themes were link workers and social prescribing; training and support; place-based factors; longevity of programmes; setting up and scaling up programmes; and mental health. CONCLUSIONS: Successes included employing practice-based and arts-based methods, being part of a research project for those not normally involved in research, sharing funding democratically, building on established relationships, and the vital role that local assets play in involving communities. Challenges involved a lack of sustainable financial support, the short-term nature of funding, inconsistencies in reaching the poorest people, obtaining the right sort of research evidence, making sufficient research progress, building relationships with already over-burdened health care staff, and redressing the balance of power in favour of communities. Despite the challenges, participants were mainly optimistic that collective approaches and meaningful co-production would create opportunities for future research partnerships with communities.
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COVID-19 , Grupos Focales , Humanos , COVID-19/epidemiología , Investigación Participativa Basada en la Comunidad , Conducta Cooperativa , Reino Unido , SARS-CoV-2 , Disparidades en el Estado de Salud , Inequidades en SaludRESUMEN
BACKGROUND: Conflicts with patients and relatives occur frequently in intensive care units (ICUs), driven by factors that are intensified by critical illness and its treatments. A majority of ICU healthcare professionals have experienced verbal and/or physical violence. There is a need to understand how healthcare professionals in ICUs experience and manage this workplace violence. METHODS: A qualitative descriptive analysis of four hospitals in Sweden was conducted using semi-structured focus-group interviews with ICU healthcare professionals. RESULTS: A total of 34 participants (14 nurses, 6 physicians and 14 other staff) were interviewed across the four hospitals. The overarching theme: "The paradox of violence in healthcare" illustrated a normalisation of violence in ICU care and indicated a complex association between healthcare professionals regarding violence as an integral aspect of caregiving, while simultaneously identifying themselves as victims of this violence. The healthcare professionals described being poorly prepared and lacking appropriate tools to manage violent situations. The management of violence was therefore mostly based on self-taught skills. CONCLUSIONS: This study contributes to understanding the normalisation of violence in ICU care and gives a possible explanation for its origins. The paradox involves a multifaceted approach that acknowledges and confronts the structural and cultural dimensions of violence in healthcare. Such an approach will lay the foundations for a more sustainable healthcare system.
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Grupos Focales , Unidades de Cuidados Intensivos , Investigación Cualitativa , Violencia Laboral , Humanos , Unidades de Cuidados Intensivos/organización & administración , Unidades de Cuidados Intensivos/estadística & datos numéricos , Grupos Focales/métodos , Suecia , Violencia Laboral/psicología , Violencia Laboral/estadística & datos numéricos , Masculino , Femenino , Adulto , Persona de Mediana Edad , Personal de Salud/psicología , Personal de Salud/estadística & datos numéricos , Actitud del Personal de SaludRESUMEN
AIM: This qualitative focus group study aims to asses cerclage-related symptoms, the impact of a cerclage on daily functioning and patient perspectives of their healthcare experience. This study extends beyond the current focus on surgical and obstetric outcomes of a cerclage, thereby contributing to a more comprehensive understanding of the challenges faced by individuals in the context of extreme preterm birth and fetal loss and the impact of a cerclage on multiple facets in life. METHODS: Participants were recruited from the Amsterdam University Medical Center, Amsterdam, the Netherlands or via the website of a Dutch patient organization for (extreme) preterm birth. Eligible participants were ≥ 18 years old with a previous vaginal and/or abdominal cerclage with a subsequent delivery at ≥ 34 weeks of gestation with neonatal survival. Two focus group discussions (FGD) were performed. A predefined format was used, which was identical for both the vaginal and abdominal cerclage group. The International Classification of Functioning, Disability and Health (ICF-DH) was used to provide structure. Outcomes were a broad range of participants reported perspectives on physical, emotional, and social-related quality of life. RESULTS: In the Vaginal Cerclage Group (VCG) and Abdominal Cerclage Group (ACG), respectively, 11 and 8 participants were included. Fear for a subsequent pregnancy loss was the most limiting factor to perform daily activities during pregnancy in all participants with a cerclage. Fear to conceive again because of prior second-trimester fetal loss was experienced by 27% in the VCG and 13% in the ACG. The majority of participants experienced a reduction in anxiety after placement of their cerclage (VCG = 64%, ACG = 75%). Decreased mobility/bedrest (VCG = 100%, ACG = 75%) and blood loss (VCG = 55%, ACG = 13%) were frequently mentioned complaints during pregnancy with cerclage. Other aspects mentioned in both groups were social isolation, the lack of societal participation, and the perceived need to quit work and sports. All participants in the abdominal cerclage group reported a lack of comprehensible and unambiguous information about obstetric management and expectations during pregnancy in secondary care hospitals. Clear communication between secondary and tertiary care hospitals about obstetric management following an abdominal cerclage, for example, about the need for cervical length measurements by ultrasound, the need for bedrest or advice concerning sexual activity was missing (63%). Psychologic support was desired in half of all participants, but was not offered to them. CONCLUSIONS: The fear of a subsequent pregnancy loss was reported as the most limiting factor in daily life by all participants. Cerclage placement resulted in the reduction of anxiety. Participants mentioned a significant impact of bedrest and activity restriction during pregnancy with cerclage on social participation and daily activities. Unfortunately, no high level evidence is available on this matter. Patients might even benefit from appropriate levels of physical activity throughout their pregnancy to promote their overall well-being. More evidence is needed to determine the optimal level of physical activity. There is a need for clear and unambiguous patient information about obstetric management.
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Cerclaje Cervical , Grupos Focales , Nacimiento Prematuro , Investigación Cualitativa , Calidad de Vida , Humanos , Femenino , Embarazo , Nacimiento Prematuro/psicología , Adulto , Países Bajos , Calidad de Vida/psicología , Prioridad del Paciente/psicología , Adulto JovenRESUMEN
The changes that parents face when caring for a child with a life-limiting condition at home can affect them on a spiritual level. Yet, indications remain that parents do not feel supported when dealing with spiritual issues related to caring for a severely ill child. This paper explores, from the perspectives of bereaved parents, chaplains, grief counselors, and primary health care providers, the barriers to supporting the spiritual needs of parents. We conducted a qualitative focus group study from a constructivist point with chaplains/grief counselors, primary care professionals, and bereaved parents. All groups participated in two consecutive focus group sessions. Data were thematically analyzed. Six chaplains/grief counselors, 6 care professionals, and 5 parents participated. We identified six barriers: (1) There were difficulties in identifying and communicating spiritual care needs. (2) The action-oriented approach to health care hinders the identification of spiritual care needs. (3) There is an existing prejudice that spiritual care needs are by nature confrontational or difficult to address. (4) Spiritual support is not structurally embedded in palliative care. (5) There is a lack of knowledge and misconceptions about existing support. (6) Seeking out spiritual support is seen as too demanding. CONCLUSION: Parents of children with life-limiting conditions face existential challenges. However, care needs are often not identified, and existing support is not recognized as such. The main challenge is to provide care professionals and parents with the tools and terminology that suit existing care needs. WHAT IS KNOWN: ⢠Spiritual care needs are an important aspect of pediatric palliative care. ⢠Parents of children with life-limiting conditions feel unsupported when dealing with spiritual questions. WHAT IS NEW: ⢠Parents and professionals mention barriers that hinder spiritual support for parents. ⢠There is a disconnect between existing support and the care needs that parents have.
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Padres , Terapias Espirituales , Niño , Humanos , Cuidados Paliativos , Espiritualidad , Investigación CualitativaRESUMEN
BACKGROUND: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. AIM: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services. DESIGN: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities. SETTING/PARTICIPANTS: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK. RESULTS: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying. CONCLUSIONS: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care.
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Planificación Anticipada de Atención , Cuidadores , Grupos Focales , Discapacidad Intelectual , Investigación Cualitativa , Cuidado Terminal , Humanos , Discapacidad Intelectual/psicología , Femenino , Masculino , Cuidado Terminal/psicología , Cuidadores/psicología , Adulto , Persona de Mediana Edad , Personal de Salud/psicología , Reino Unido , Anciano , Actitud del Personal de SaludRESUMEN
BACKGROUND: Oral health problems are common, but often overlooked, among people receiving palliative care. AIM: To better understand how oral health can be addressed in this population, this study aimed to explore the perceptions of oral health care among medical practitioners who provide palliative care to inform the development of a palliative oral health care program. DESIGN: A descriptive qualitative design was adopted. SETTING/PARTICIPANTS: A single focus group was conducted with 18 medical practitioners at a palliative care facility in Sydney, Australia. All participants had experience providing palliative care services to clients. The focus group was audio recorded, transcribed and thematically analysed. RESULTS: The results from the inductive thematic analysis identified four themes. The themes highlighted that participants were aware of the oral health needs of people receiving palliative care; however, they also reflected on the complexity in delivering oral health care across the healthcare settings, as well as the challenges around cost, lack of appropriate dental referral pathways, time constraints and limited awareness. Participants also provided recommendations to improve the delivery of oral health care to individuals receiving palliative care. CONCLUSIONS: To improve the provision of oral health care in this population, this study highlighted the need for oral health training across the multidisciplinary team, standardised screening assessments and referrals, a collective responsibility across the board and exploring the potential for teledentistry to support oral health care provision.
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Salud Bucal , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Investigación Cualitativa , Australia , Personal de SaludRESUMEN
BACKGROUND: Men who have sex with men (MSM) face many challenges and biases in healthcare. Within urology there is a need to better understand how prostate cancer impacts MSM given the unique ways in which side effects that accompany treatment may affect this population. The goal of this study is to explore the experience of MSM with prostate cancer to advance the existing literature in this area and inform implementation and delivery of clinical practice and policy guidelines. METHODS: Four focus groups were conducted with a semi-structured interview guide. Using a phenomenological qualitative approach consistent with grounded theory [1] and naturalistic inquiry principles we sought to better understand the direct experiences of MSM with prostate cancer. Audio transcriptions were thematically analyzed to identify themes that impact MSM throughout their prostate cancer journey. An iterative, team-wide classification process was used to identify, organize, and group common codes into higher-order categories and themes. RESULTS: Patient's choice of provider and their interactions with the healthcare system were strongly impacted by their sexual identities. Participants commented on navigating the heteronormative healthcare environment and the impact of assumptions they encountered. MSM experienced the sexual side effects of prostate cancer treatment in unique ways. Issues with erectile dysfunction and ejaculatory dysfunction had significant impacts on patient's sexual experience, with some describing being forced to explore new modes of sexual expression. Anejaculation was a theme that was distressing for many participants. The emotional impact of a prostate cancer diagnosis was significant in the men interviewed. Common themes included loss of identity and fear for future relationships. CONCLUSIONS: MSM have unique concerns after prostate cancer treatment that differ from men who don't identify as MSM. It is critical that providers familiarize themselves with the concerns of this patient population regarding prostate cancer treatment. An important step toward reducing heteronormative bias in prostate cancer care is to better understand the goals, identity, and sexual practices of MSM and to provide informed anticipatory guidance.
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Disfunción Eyaculatoria , Neoplasias de la Próstata , Minorías Sexuales y de Género , Masculino , Humanos , Grupos Focales , Homosexualidad Masculina , Neoplasias de la Próstata/terapia , SesgoRESUMEN
BACKGROUND: Gambling advertising employs a range of persuasive strategies. We therefore aimed to evaluate a counter-advertising intervention video to increase resilience to gambling advertising persuasion. METHODS: Three in-depth focus groups were conducted, and each group contained a mixture of gambling-related academics (N = 12) and experts with lived experience of gambling-related harm (N = 10). Participants were given access to the intervention video and provided feedback during the focus groups. Qualitative data were audio recorded and thematically analysed by the research team. RESULTS: Three main themes were identified. First, participants recommended a shorter video that had a simplified and digestible structure. Second, frequent real-world examples of gambling advertisements within the video were discouraged, and the inclusion of a relatable human voiceover was considered imperative to the receptiveness of the video. Finally, participants deemed it important to deliver psychologically grounded yet jargon-free content via a conversational style. An overall narrative framed by consumer-protection was also preferred in order to increase acceptance of the video content, rather than a more didactic framing. CONCLUSIONS: Evaluating the acceptability of a counter advertising intervention video provided valuable insight from both an academic and lived-experience perspective. Such insight is instrumental to the meaningful co-design of counter-advertising interventions.
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BACKGROUND: Community-based exercise programmes (CBEPs) offer a practical and viable approach to providing people with Parkinson's disease (PwP) the opportunity to exercise as an ancillary therapeutic benefit to pharmacological management. This study explores the perceptions of exercising participants (PwP) and non-participating partners involved in an exercise class delivered through a community-university partnership. METHODS: Two separate focus group discussions were conducted: one with class participants (PwP: n = 7, H&Y scale I to III), and the other with non-participating partners of PwP (n = 4). RESULTS: Thematic analysis of the data identified that a range of physical, psychological and social factors were perceived to influence engagement: (1) actively taking control, (2) exercise is medicine for the mind and body, and (3) a community working together to promote exercise for parkinson's. Participants and partners felt that the support from the group, including the instructors and student volunteers, empowered and supported PwP to proactively self-manage their health, enjoy exercise in an inclusive group setting, and develop strong social connections with others in the local Parkinson's community. Support to exercise from healthcare professionals was identified as both an enabler and barrier to participation. CONCLUSIONS: This study underscores the significance of a community-university partnership as a complementary therapeutic approach for PwP. It also provides critical reflections on its sustainability, including implications for how exercise is considered as medicine for PwP. Additionally, it offers practical recommendations to galvanise community participation and provide inclusive and viable exercise opportunities for PwP.
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Terapia por Ejercicio , Enfermedad de Parkinson , Investigación Cualitativa , Humanos , Enfermedad de Parkinson/psicología , Enfermedad de Parkinson/terapia , Masculino , Femenino , Anciano , Terapia por Ejercicio/métodos , Persona de Mediana Edad , Universidades , Grupos Focales/métodos , Anciano de 80 o más Años , Ejercicio Físico/fisiología , Ejercicio Físico/psicologíaRESUMEN
BACKGROUND: Disability is often an essentialised and oversimplified concept. We propose refining this while incorporating the multidimensional nature of disability by increasing the use of existing survey questions and their corresponding data to enrich, broaden and inform understandings of disability. METHODS: We combined patient and public involvement and engagement (PPIE) with focus groups and concept mapping to collaboratively map disability survey questions into conceptual models of disability with six members of the public with lived experiences of disability. RESULTS: Using reflexive thematic analysis, we identified three qualitative themes and eight subthemes through a series of four PPIE activities: (1) understanding concepts of disability based on individual experience, subthemes: 1.1-preference for the biopsychosocial model, 1.2-'Reviewing' instead of mapping survey questions and 1.3-comparing questions to real life; (2) consistency between understanding needs and implementing adjustments, subthemes: 2.1-connecting preparation and operation, 2.2-inclusivity and adjustments in activities and 2.3-feedback for improving activities and (3) real-world applications-targeted awareness raising, subthemes: 3.1-who, where, what and how to share activity findings and results, 3.2-sharing with human resource and equality, diversity and inclusion professionals. CONCLUSION: Members of the public who collaborated in these activities felt empowered, engaged and supported throughout this study. This approach offers a model for other researchers to cede power to the public over the research aspects typically reserved for researchers. PATIENT OR PUBLIC CONTRIBUTION: We involved members of the public with lived experience throughout this study-co-design, co-facilitation, collaboratively mapping the disability or disability-related survey questions into conceptual models of disability, evaluation of the activities, co-analysis and co-authorship.
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Participación de la Comunidad , Personas con Discapacidad , Grupos Focales , Participación del Paciente , Humanos , Participación de la Comunidad/métodos , Encuestas y Cuestionarios , Investigación Cualitativa , Masculino , FemeninoRESUMEN
INTRODUCTION: Access to medicines is one of the biggest challenges to health systems, affecting society and individuals. This study aims to explore citizens' opinions, perceptions and attitudes on the model of medicines' research and development (R&D) and price setting of medicines reimbursed by the Italian National Health Service. MATERIALS AND METHODS: We run four online focus groups, analysed through thematic analysis. INCLUSION CRITERIA: people aged 30-70 years, who had completed at least compulsory schooling (8-10 years), with no specialised knowledge about the subject. EXCLUSION CRITERIA: healthcare workers, pharmaceutical and device industry employees, researchers and medicine policy board members. We aimed to include a purposive sample of 20 participants, variable in terms of age, educational level and place of residence. RESULTS: Eleven women and six men participated. The mean age was 53 years (range: 28-73). Most (n = 15) had a university degree or attended secondary schools. Eight had a job, five were not employed, and four were retired. In general, participants supported the role of the public health service. Almost all had limited knowledge of medicines' R&D and price setting. Most asked for transparency on medicine prices and negotiation criteria. Participants considered revenues of pharmaceutical companies disproportionate and most called for containment measures of profits. Most were in favour of a stronger public intervention in R&D and prices' negotiations. Few were sceptical of the public sector's ability to play this role. DISCUSSION: Medicines' prices were discussed as a health matter. Increasing citizens' awareness of these topics is needed by providing spaces and conditions to participate in the discussion, including different perspectives and interests. PATIENT OR PUBLIC CONTRIBUTION: Members of BEUC-the European consumer organisation-proposed the project. Altroconsumo, an independent consumer organisation and OCU, a Spanish consumer organisation, participated in developing the project and the main topics to discuss. The Mario Negri Institute and Aplica cooperative-the Spanish methodological team-were involved by BEUC and their national organisations to define the methodology, organisational aspects and contents and conducted the focus groups.
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Preparaciones Farmacéuticas , Medicina Estatal , Femenino , Humanos , Masculino , Persona de Mediana Edad , Escolaridad , Grupos Focales , Italia , Preparaciones Farmacéuticas/economía , Adulto , AncianoRESUMEN
BACKGROUND: There is evidence that most people are aware of the importance of healthy eating and have a broad understanding regarding types of food that enhance or detract from health. However, greater health literacy does not always result in healthier eating. Andreasen's Social Marketing Model and Community-Based Social Marketing both posit that, in order to change health behaviours, it is crucial to understand reasons for current behaviours and perceived barriers and benefits to improved behaviours. Limited research has been conducted, however, that explores these issues with general populations. This study aimed to help address this gap in the evidence using a qualitative methodology. METHODS: Three group discussions were conducted with a total of 23 participants: (1) young women aged 18-24 with no children; (2) women aged 35-45 with primary school aged children; and (3) men aged 35-50 living with a partner and with pre- or primary school aged children. The discussions took place in a regional centre of Victoria, Australia. Transcriptions were thematically analysed using an inductive descriptive approach and with reference to a recent integrated framework of food choice that identified five key interrelated determinants: food- internal factors; food- external factors; personal-state factors; cognitive factors; and sociocultural factors. RESULTS: We found that food choice was complex, with all five determinants evident from the discussions. However, the "Social environment" sub-category of "Food-external factors", which included family, work, and social structures, and expectations (or perceived expectations) of family members, colleagues, friends, and others, was particularly prominent. Knowledge that one should practice healthy eating, which falls under the "Cognitive factor" category, while seen as an aspiration by most participants, was often viewed as unrealistic, trumped by the need and/or desire for convenience, a combination of Food-external factor: Social environment and Personal-state factor: Psychological components. CONCLUSIONS: We found that decisions regarding what, when, and how much to eat are seen as heavily influenced by factors outside the control of the individual. It appears, therefore, that a key to improving people's eating behaviours is to make it easy to eat more healthfully, or at least not much harder than eating poorly.
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Pueblos de Australasia , Investigación Cualitativa , Población Rural , Adolescente , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Adulto Joven , Dieta Saludable/psicología , Conducta Alimentaria/psicología , Grupos Focales , Preferencias Alimentarias/psicología , Población Rural/estadística & datos numéricos , Victoria , NiñoRESUMEN
BACKGROUND: The COVID-19 pandemic, caused by SARS-CoV-2, was one of the greatest modern public health crises that the world has faced. Countries undertook sweeping public health and social measures (PHSM); including environmental actions such as disinfection and ventilation; surveillance and response, such as contact tracing and quarantine; physical, such as crowd control; and restrictions on travel. This study focuses on the public perceptions of PHSM in two countries, Japan and the United Kingdom (UK) as examples of high-income countries that adopted different measures over the course of the pandemic. METHODS: This study was conducted between November 2021 and February 2022, a period in which the Omicron variant of SARS-CoV-2 was predominant. Fourteen online focus group discussions were conducted in each country. Overall, 106 total participants (50 from the UK and 56 from Japan) participated in 23 focus groups (11 in the UK and 12 in Japan) with an average of three to six participants per group. Both countries were compared using a thematic analysis method. RESULTS: Both countries' participants agreed that vaccination was an effective measure. However, they did not favor mandatory vaccination policies. Working from home was well accepted by both sides, but they reported that schools should have continued to be opened as before COVID-19. Both sides of participants expressed that temperature testing alone in indoor facilities was ineffective as a COVID-19 control measure. There were contrasting views on face covering rules in public spaces, international and domestic movement restrictions. High acceptance of mask-wearing was reflective of Japanese customs, while it was accepted as a strong recommendation for participants in the UK. Japanese participants favored quarantine for international travel, while the UK participants supported banning non-essential travel. CONCLUSION: Similar and contrasting views on PHSM against COVID-19 between Japan and the UK demonstrated how policies in controlling an epidemic should be tailored by country with respect to its norms, cultures, economic and disease burden. Our findings may guide how policy makers can engage with the public through effective health communication and consider regulations that are aligned with the public's views and capacities in changing their behavior for future pandemic preparedness.
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COVID-19 , Grupos Focales , Salud Pública , Opinión Pública , Investigación Cualitativa , Humanos , COVID-19/prevención & control , COVID-19/epidemiología , Japón , Reino Unido/epidemiología , Masculino , Femenino , Adulto , Persona de Mediana Edad , SARS-CoV-2 , Adulto Joven , Pandemias/prevención & control , AncianoRESUMEN
BACKGROUND: While vegetable intakes in Australia remain sub-optimal across all age groups, children are rarely consulted about their ideas on how to increase consumption. Qualitative research involving children provides an opportunity to consider their views. The aim of the Kids initiative inspires Dietary Success in Adults and Youth (KiiDSAY) project was to explore the views of school-aged children, who had participated in a school-based nutrition education program, about inspiring their peers and families to eat more vegetables. METHODS: A total of 26 children (15 boys) aged 10-12 years from four primary schools in New South Wales, Australia, participated in seven focus group interviews. Purposeful sampling was used to recruit participants. The study involved open-ended semi-structured questions conducted via Zoom that were audio-recorded, transcribed verbatim and analysed using thematic analysis with deductive and inductive coding in NVivo. RESULTS: Four major themes emerged: (i) taste; (ii) family environment; (iii) healthy eating; and (iv) change makers; with subthemes that were embedded within Social Cognitive Theory and Ecological Model of Health Behaviour theoretical frameworks. CONCLUSIONS: Children's inputs hold great potential for informing future interventions, particularly when designing or refining school-based nutrition programs. Children offered suggestions on how to inspire increased vegetable consumption among their peers and families that could be taken into consideration for future research and practice. These included: cooking activities in the home and school settings using recipes that creatively hide/mask/enhance the flavour of vegetables, involving positive role models and supportive school environments. Additionally, children recommended a sequential approach to the delivery of recipes starting from fruit-based and transitioning to vegetable-based recipes. Given the challenges faced in increasing children's vegetable consumption, particular focus on future research in this area is warranted. TRIAL REGISTRATION: FEAST Trial registered 14th December 2020 with the Australian and New Zealand Clinical Trials Registry (ACTRN12620001347954).
Asunto(s)
Dieta , Verduras , Niño , Masculino , Adulto , Adolescente , Humanos , Australia , Frutas , Investigación Cualitativa , Conducta AlimentariaRESUMEN
Prior research shows that adopting simple dietary substitutions (e.g., replacing beef with poultry or plant-based entrees) can improve dietary quality and reduce the negative environmental consequences of food production, but little is known about how to encourage people to adopt these substitutions. This study aimed to examine reactions to messages encouraging healthy, sustainable dietary substitutions among emerging adults ages 18-25. We conducted four online focus groups with a diverse sample of US emerging adults (n = 28; 61% female). Focus groups explored emerging adults' reactions to messages encouraging them to adopt three target dietary substitutions: replacing beef and pork with poultry and plant-based entrees; replacing juice with whole fruit; and replacing dairy milk with non-dairy milk. We transcribed discussions verbatim and adopted a thematic approach to analyzing the transcripts. Results showed that participants perceived messages to be most effective at encouraging the target dietary substitutions when the messages: encouraged specific, achievable dietary changes; linked these dietary changes to clear consequences; included personally relevant content; included statistics; were succinct; and used a positive tone. Across the target dietary substitutions, two message topics (small changes, big benefits, which emphasized how small dietary changes can have large positive health and environmental impacts, and warning, which discussed the negative health and environmental impacts of dietary choices) were generally perceived to be most effective. A few participants expressed doubt that the target dietary substitutions would have meaningful environmental impacts. Results suggest that campaign messages to encourage healthy, sustainable dietary substitutions may be more effective if the messages make the target dietary substitutions seem achievable and use statistics to clearly describe the positive impacts of making these changes.
Asunto(s)
Dieta , Ambiente , Adulto , Humanos , Adolescente , Adulto Joven , Investigación Cualitativa , Grupos Focales , AlimentosRESUMEN
BACKGROUND: Youth healthcare has an important role in promoting a healthy lifestyle in young children in order to prevent lifestyle-related health problems. To aid youth healthcare in this task, a new lifestyle screening tool will be developed. The aim of this study was to explore how youth healthcare professionals (YHCP) could best support parents in improving their children's lifestyle using a new lifestyle screening tool for young children. METHODS: We conducted four and seven focus groups among parents (N = 25) and YHCP (N = 25), respectively. Two main topics were addressed: the experiences with current practice of youth healthcare regarding lifestyle in young children, and the requirements for the lifestyle screening tool to be developed. The focus groups were recorded, transcribed verbatim and analysed using an inductive approach. RESULTS: Both parents and YHCP indicated that young children's lifestyles are often discussed during youth healthcare appointments. While parents felt that this discussion could be more in-depth, YHCP mainly needed clues to continue the discussion. According to parents and YHCP, a new lifestyle screening tool for young children should be easy to use, take little time and provide courses of action. Moreover, it should be attractive to complete and align with the family concerned. CONCLUSIONS: According to parents and YHCP, a new lifestyle screening tool for young children could be useful to discuss specific lifestyle topics in more detail and to provide targeted advice.