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For Hispanic/Latino MSM (HLMSM) in the South, HIV burden remains high, and HIV elimination is a national priority. Between July and September 2016, using a strengths-based approach informed by resilience theory, we conducted qualitative interviews with HIV-negative HLMSM in five southern cities in the United States with elevated HIV prevalence. We analyzed data using a qualitative content analysis approach, assessing for interrater reliability. A brief behavioral survey was also conducted. We enrolled 51 HLMSM (mean age = 33 years, range = 15-63). HLMSM discussed the climate of fear about HIV and homosexuality impeding HIV prevention, including the impact of stigma and taboo. Three main strengths-based strategies emerged for preventing HIV: assessing partner risk, establishing boundaries for sexual interactions, and self-education. Future HIV prevention efforts may benefit from balancing risk-based approaches with those that emphasize resilience, address partner trustworthiness and safety, and focus on providing novel outlets for HIV prevention education.
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PURPOSE: This study explores student nurse anesthetists' (SNAs) learning in the operating room during the coronavirus 2019 pandemic. DESIGN: An explorative design with semistructured interviews was used. METHODS: Thirteen former SNAs and 12 clinical supervisors (8 of whom were included in the final analysis) were recruited from 6 counties in Sweden. Participants were purposively recruited. Inclusion criterion for former SNAs was having completed the nurse anesthesia program in the fall of 2020 to spring 2022; and for nurse anesthetists, those who have experience in supervising SNAs. The interviews were analyzed with thematic analysis. FINDINGS: The analysis identified one theme and five subthemes. The theme was that student learning was in focus despite an ongoing pandemic. Every learning situation contributed, and learning was triggered by the challenges. Both the SNAs and the supervisors exhibited resilience by accepting the situation and striving to do their absolute best in a nonoptimal learning environment. Over time, learning and supervision returned to normal. CONCLUSIONS: During the pandemic, learning was ongoing despite stress, fear, and other challenging factors. Students' learning appears to have been prioritized. The study highlights that nurse anesthetists and SNAs were resilient, resourceful, and able to find new ways to keep learning going.
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Background: Chronic pain is a highly prevalent long-term condition, experienced unequally, impacting both the individual living with pain, and wider society. 'Acceptance' of chronic pain is relevant to improved consultations in pain care, and navigating an approach towards evidence-based, long-term management and associated improvements in health. However, the concept proves difficult to measure, and primary qualitative studies of lived experiences show complexity related to our socio-cultural-political worlds, healthcare experiences, and difficulties with language and meaning. We framed acceptance of chronic pain as socially constructed and aimed to conceptualise the lived experiences of acceptance of chronic pain in adults. Methods: We conducted a systematic search and screening process, followed by qualitative, interpretive, literature synthesis using Meta-ethnography. We included qualitative studies using chronic pain as the primary condition, where the study included an aim to research the acceptance concept. We conducted each stage of the synthesis with co-researchers of differing disciplinary backgrounds, and with lived experiences of chronic pain. Findings: We included 10 qualitative studies from Canada, Sweden, The Netherlands, Ireland, UK, Australia and New Zealand. Our 'lines of argument' include a fluid and continuous journey with fluctuating states of acceptance; language and meaning of acceptance and chronic pain, a challenge to identity in a capitalist, ableist society and the limits to individualism; a caring, supportive and coherent system. The conceptual framework of the meta-ethnography is represented by a rosebush with interconnected branches, holding both roses and thorns, such is the nature of accepting life with chronic pain. Conclusion: Our findings broaden conceptualisation of 'acceptance of chronic pain' beyond an individual factor, to a fluid and continuous journey, interconnected with our socio-cultural-political worlds; an ecosystem.
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BACKGROUND: Disclosing ongoing child sexual abuse (CSA) to a mandated reporter should facilitate youth safety. Unfortunately, youth may continue to experience abuse after disclosure, although little research has examined this phenomenon. OBJECTIVE: We aimed to understand when and why the child protection process fails after youth disclose to a mandated reporter. PARTICIPANTS AND SETTING: Hotline support specialists completed an online survey about 124 anonymous hotline chats with youth whose abuse continued after a prior disclosure to a mandated reporter. METHODS: We thematically analyzed support specialists' open-ended descriptions of information disclosed by the victim in their chat. RESULTS: In most cases (71 %), the abuse was seemingly not reported or not investigated. Mandated reporters' belief of the victim and minimization of abuse affected reporting decisions. Some mandated reporters tried to address the abuse directly with the perpetrators, endangering victims. Rarely, mandated reporters did not report to respect the victim's wishes. In 24 % of cases, the victim described an investigation that did not result in protection. Victims indicated that investigators "sided to the perpetrator" or said there was not enough evidence. Some victims recanted, often in fear. In 6 % of cases, formal actions were taken but did not provide long-term protection. Victims described temporary cessation of abuse that resumed because their guardian(s) allowed the perpetrator to access them. CONCLUSIONS: Disclosing to a mandated reporter can engender traumatic experiences without resulting in long-term safety. Professionals need additional training to increase their knowledge of CSA and respond in ways that prioritize physical and emotional safety.
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Purpose: Fertility concerns (FC) are central to the well-being of many adolescent and young adult (AYA) cancer survivors. Clinical conversations about FC and fertility preservation are suboptimal, increasing patient distress. The goal of this project was to establish content validity and comprehensibility of self-report questions on FCs for AYAs with cancer. Methods: Following best practices, we conducted: (1) item identification, refinement, and generation; (2) translatability and reading level review; and (3) cognitive interviews. Items were reviewed by five AYAs in each round of cognitive interviews. Results: A systematic search yielded 63 measures and 873 items. Fifty items were subsequently modified to enhance clarity and relevance, representing subdomains of psychological and social/relational FC. Flesch-Kincaid analysis found 31 items written above the 6th grade level, which were subsequently revised. Translatability review resulted in the modification of 3 items. During cognitive interviews, 76% of AYAs found items easy to answer with 52% describing them as "very easy" and 24% as "somewhat easy." Sixty percent of participants indicated the items captured their experiences. The majority of those who reported items only somewhat reflected or did not reflect their experiences suggested items were simply not applicable for their particular case. Conclusion: This study is a critical step toward the foundation for an FC measurement system that is reliable, flexible, developmentally appropriate, comprehensible, translatable, and interpretable. Subsequent steps include psychometric testing to examine the construct validity and reliability of the FC items and calibration to enable the application of computer-adaptive testing and short form development. The evaluation will include potential item response bias by age range, gender identity, and race/ethnicity.
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BACKGROUND: Qualitative studies have examined the experiences of subjective cognitive dysfunction in specific populations or specific disease stages, but there has not yet been a systematic synthesis and evaluation of findings related to perceptions of subjective cognitive dysfunction in nondementia-related chronic illnesses. OBJECTIVE: The aim of this study was 2-fold: (1) to undertake a systematic review of experiences of subjective cognitive dysfunction in people with nondementia-related chronic disease and (2) to develop an explanatory framework to describe the experiences of living with subjective cognitive dysfunction. METHODS: Four databases were systematically searched for studies on subjective cognitive dysfunction up to June 2023. Qualitative synthesis was conducted on the final sample (N = 25) using Sandelowski's adaptation of Nobilt and Hare's reciprocal transactional analysis method. Critical appraisal was completed using the Critical Appraisal Skills Programme checklist. RESULTS: Through constant comparison of key concepts, findings were organized within 4 interrelated themes that informed a conceptual explanatory model of adapting to living with subjective cognitive dysfunction: (1) symptoms, (2) health care, (3) perceptions of self, and (4) relationships. Participants highlighted how subjective cognitive dysfunction affected interactions in health care settings and involved other symptoms that in turn complicated meaning, self-enhancement, and mastery. CONCLUSIONS: Our model of the process of adapting provides a new way to conceptualize cognitive dysfunction in chronic illness and suggests opportunities for health care professionals to support patients and their families. The results highlight the need for more research to better understand the role of subjective cognitive dysfunction in nondementia-related chronic illnesses.The review protocol was registered in PROSPERO (CRD42021231410).
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Hypertensive disorders of pregnancy are a leading cause of pregnancy-related morbidity and mortality. The primary objective of this study was to compare the frequency of documentation of postpartum blood pressure through remote blood pressure monitoring with text-message delivered reminders versus office-based follow-up 7-10 days postpartum. The secondary objective was to examine barriers and facilitators of both care strategies from the perspectives of individuals who experienced a hypertensive disorder of pregnancy. We conducted a randomized controlled trial at a tertiary care academic medical center in the southeastern US with 100 postpartum individuals (50 per arm) from 2018 to 2019. Among 100 trial participants, blood pressure follow-up within 7-10 days postpartum was higher albeit not statistically significant between postpartum individuals randomized to the remote assessment intervention versus office-based standard care (absolute risk difference 18.0%, 95% CI -0.1 to 36.1%, p = 0.06). Patient-reported facilitators for remote blood pressure monitoring were maternal convenience, clarity of instructions, and reassurance from the health assessments. These positive aspects occurred alongside barriers, which included constraints due to newborn needs and the realities of daily postpartum life.
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Aboriginal Australians experience a high prevalence of chronic obstructive pulmonary disease (COPD), with high rates of potentially preventable hospitalisations. However, little is known about Aboriginal peoples' experiences of living with COPD and how they navigate health care systems. This study used thematic analysis and Aboriginal methodology to explore Aboriginal peoples' lived experiences of COPD, their health care journey from receiving a diagnosis of COPD to the clinical management, and the impact of COPD on their daily lives. We conducted in-depth semi-structured interviews over a 6-month period with 18 Aboriginal adults diagnosed with COPD from four Aboriginal Community Controlled Health Services (ACCHS) in New South Wales, Australia. Reflexive thematic analysis was employed to ensure rigour. The findings revealed deeply personal and reflective stories shaped by historical, social, and cultural realities of Aboriginal peoples living with COPD. Four themes were identified characterising their experiences. Based on the findings, the following guidance is provided on future COPD care for Aboriginal peoples: Better alignment of existing COPD management with Aboriginal peoples' cultural contexts and perspectives to improve access to culturally safe care; Increased funding for ACCHS to enhance COPD management, such as early detection through case finding and access to ACCHS-led pulmonary rehabilitation; Engaging family members in COPD management and providing culturally centred COPD education that facilitates discussions and builds health literacy and self-management skills; Implementing health promotion initiatives to increase awareness and counteract fear and shame to improve early COPD detection.
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INTRODUCTION: Neonatal care is complex, involving multiple people and technologies within a community of care. When preterm babies are cared for far from home and/or transferred between units, the whole community of care (and particularly parent participation) is disrupted. Although previous studies have captured subjective experiences of parents, there has been little research exploring the material practices undertaken by parents as a consequence of place-of-care decisions, or the social organisation of those practices. METHODS: As part of a wider study exploring optimal place-of-care, semistructured interviews were conducted between July 2018 and October 2019 with 48 parents (36 families) with one or more preterm babies (born at 27-31 weeks gestation) cared for in a neonatal unit in the last 12 months. FINDINGS: We highlight parents' labour-intensive and stressful work to: (1) parent in the neonatal care community (an oversight role that goes beyond contemporary notions of 'involvement'); (2) create continuity amid place-of-care disruptions; and (3) adapt to the managerial logics of neonatal care settings. Our analysis focuses on the work generated by managerial systems that organise place-of-care decision-making and other efficiency-focused practices. Parents are absorbed into negotiating institutional systems and diverted from routine parenting activities. CONCLUSION: Those involved in the organisation and management of neonatal care should take account of how managerial systems impact parents' workload, ability to participate in their baby's community of care and, ultimately, on the wellbeing and development of babies and their families. PATIENT OR PUBLIC CONTRIBUTION: The OPTI-PREM study embedded parents' experiences of neonatal care into the research, through a discrete workstream that employed qualitative methodology to capture parents' experiences-as reported in this paper. The OPTI-PREM project was also supported by a Bliss volunteer parent panel, which was involved in designing and overseeing the research. Bliss 'champion[s] the right for every baby born premature or sick to receive the best care by supporting families, campaigning for change and supporting professionals and enabling life-changing research' (https://www.bliss.org.uk/about-us/about-bliss). A representative of Bliss is a co-author of this manuscript, and a parent representative (named in the Acknowledgements) provided feedback during its preparation.
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Recien Nacido Prematuro , Entrevistas como Asunto , Responsabilidad Parental , Padres , Investigación Cualitativa , Humanos , Padres/psicología , Femenino , Recién Nacido , Masculino , Responsabilidad Parental/psicología , Adulto , Unidades de Cuidado Intensivo NeonatalRESUMEN
Qualitative research is a relatively new approach for conducting studies in health disciplines. The value of this research approach is to explore peoples' experiences and gain a deeper understanding of the meaning of their experiences. Qualitative inquiries answer research questions about what, why and how by implementing various research designs such as qualitative descriptive, qualitative case study, ethnological, phenomenology, or grounded theory designs. Purposive and snowball sampling methods are commonly used to recruit participants followed by personal interviews or focus group discussions to collect data. Data analysis requires several coding procedures performed by the researcher or an alternative is using a coding software program. Preparing a manuscript for dissemination of the results can be challenging, although achievable.
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Investigación Cualitativa , Proyectos de Investigación , Humanos , Grupos Focales , Teoría Fundamentada , Recolección de DatosRESUMEN
In this commentary, I consider how geographers narrating speculative futures might risk disempowering their research participants. Reflecting on my work with community cultural organizations, I discuss the importance of centering participants and their geographical imaginations of their own futures in qualitative research projects. I then consider restructuring researcher-participant voice in the narration of speculative futures, and my use of future-focused questioning.
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BACKGROUND: The use of seclusion in Adolescent Inpatient Psychiatric Units is being heavily scrutinised due to its forceful nature and potential to cause harm. This study aimed to understand staff perspectives on reasons for seclusion in an Adolescent Inpatient Psychiatric Unit. METHOD: A mixed methods approach that included the Attitudes to Seclusion Survey followed by a semi-structured interview on the reasons for seclusion was used. We recruited 31 participants who worked on the unit of which 27 were involved in seclusion. RESULTS: The findings showed that the majority of staff view seclusion as undesirable and believe it should only be used out of necessity. However, there was disagreement among staff about the reasons why adolescents were secluded and whether those reasons were justified. Staff identified factors that contributed to increases in seclusion but also provided several ways in which seclusion could be reduced. CONCLUSIONS: These findings highlight a need for precision on what constitutes justifiable use of seclusion to reduce the potential for misuse. It also shows opportunities exist for further reduction in seclusion through teamwork and communication.
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INTRODUCTION: More than half of those who die by suicide do not communicate about suicide prior to their death. This project describes the emotional state and decision-making among "unplanned" attempt survivors to inform a conceptual model and suicide prevention interventions. METHODS: This qualitative study purposefully sampled patients who reported having no suicidal thoughts on a standardized mental health questionnaire within 60 days (about 2 months) prior to a nonfatal suicide attempt documented in the health record. Participants verbally consented to telephone interview participation. Semistructured audio-recorded interviews elicited suicide attempt survivor descriptions of their emotional state and experiences in the days, hours, and minutes leading up to their suicide attempt. Interviews were transcribed and analyzed using grounded theory. The biopsychosocial theory of emotion regulation informed conceptual model development. RESULTS: Participants (N = 26) described 2 distinct "phases" prior to the attempt. First, a phase of increasing life stressors, transitory and nonspecific suicidal thoughts, and a reluctance to disclose experiences. Second, an overwhelming emotional state led to a sudden suicide attempt and nondisclosure due to the rapidity and intensity of the experience. These results informed the conceptual model and intervention development to manage unplanned and overwhelming urges to attempt suicide. DISCUSSION: Qualitative analysis informed the development of an intervention for the high-intensity "hot" period preceding an attempt, including specific steps to manage a highly intense emotional state in combination with overwhelming urges to kill oneself. CONCLUSION: Future research is needed to evaluate whether and how this intervention helps support people with a chance of "unplanned" suicide attempts.
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INTRODUCTION: Regulations designed to protect children participating in clinical research often restrict the availability of research data necessary for the development of age-specific therapies and drug dosing. Few data exist on how children experience participation in clinical research, and studies investigating young children undergoing an intensive medical treatment are lacking. METHODS: Mixed methods with semi-structured interviews and DISCO-RC questionnaires were used to explore young children's and their parents' experiences in clinical research participation during a kidney transplantation trajectory. FINDINGS: Nine children and their parents were interviewed. Children's median age at kidney transplantation was 4 years (IQR 4,7); age at interview was 7 years (IQR 6,9). Thematic content analysis of interviews revealed that most children were unaware of having participated in a study. Both children and their parents frequently were unaware whether procedures were standard care or research related. The additional burden attributed to study participation varied from not at all to heavy in combination with intensive medical treatment. Positive experiences included kind healthcare professionals, effective distraction techniques, educational aspects, contributing to science and extra check-ups. Most reported negative experiences were conflicting communication, spending much time in the hospital, missing school and suboptimal planning. Venous puncture was stressful for all children, whereas the discomfort of other procedures varied. CONCLUSION: Pediatric clinical research design should focus on education and fun during research procedures, smart planning, consistent communication, close collaboration between clinical and research team and age appropriate distraction techniques.
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Breast cancer survivors often lack post-treatment psychological care options. Internet-delivered cognitive behavioural therapy (iCBT) has proven effective for depression and anxiety among survivors. Involving carers in iCBT can further encourage survivors and enhance the benefits they receive. This study explored survivors' experiences with iCBT and their perspectives on carer involvement. Fifteen participants were interviewed. Data were analysed using thematic content analysis. Most survivors found iCBT helpful, mentioning evidence-based approach, reminders, readiness for change, recognising benefits, and contributing to research as engagement facilitators. Suggestions included widespread availability of the programme and additional guidance on some tools. Reluctance to involve carers resulted from survivors' unwillingness to discuss cancer, desire not to burden others, and the need for ownership over their recovery. Findings support iCBT's acceptability in addressing post-treatment depression and anxiety among survivors. Future research could explore alternative ways to involve carers, such as dedicated programmes, optional joint exercises, or brief interventions.
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Death Cafes (DCs) explicitly encourage conversation and constitute space to explore the dialogue around death and dying. This study draws on scholarship from communication and dialogue theory to explore the design features and facilitation practices used within DC meetings. Through qualitative analysis of the DC webpage and interviews with facilitators, the study uncovers how DC facilitators structure and manage conversations to help attendees normalize death conversations and manage the death anxiety of others in their lives. The analysis highlights three main tensions within the DC structure and facilitation guidelines: structure versus openness, authority versus equality, and conversation versus information. These fundamental contradictions are inherent in DCs, and facilitators need to manage them in order to promote meaningful dialogue among DC participants. This study deepens the theorizing around DC facilitation practices and has implications for death and dying practitioners hoping to foster dialogue about end-of-life topics.
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Reproductive autonomy encompasses one's ability to make decisions around contraceptive use, pregnancy, and childbirth. An individual's geographic location affects access to a wide range of information and care related to reproductive choice. Individuals in rural areas face additional barriers to reproductive health and decision-making than those in urban areas. This phenomenological qualitative study examined the experiences with and perceptions of reproductive decision-making among women in rural Appalachian communities in the United States. Four themes emerged from the data: autonomy tied to choice, role of religion and church on autonomy and decision-making, navigating limited access to care, and shame. Women should be supported in making reproductive health decisions, and efforts are needed to increase autonomy within reproductive health care and decisions. Sexual health programming within school and other community settings should address shame that often occurs around reproductive health topics, particularly among religious communities.
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The global health crisis precipitated by the COVID-19 pandemic underscored the necessity of swift vaccine development and distribution to curb virus transmission. However, discussions on vaccine acceptance and hesitancy have predominantly focused on pre-vaccination attitudes, often overlooking the significance of post-vaccination experiences in shaping individual and communal attitudes toward vaccines. This oversight is particularly critical among healthcare workers in low- and middle-income countries (LMICs), who play a dual role in combating the pandemic and influencing public vaccine sentiment. Using the theory of planned behavior, this study explores the post-vaccination experiences of healthcare workers in Sierra Leone and assesses how these experiences influence their attitudes toward vaccine safety, efficacy and their advocacy for vaccine uptake within their communities. Employing a qualitative design, the study interviewed 24 healthcare workers, 21 of whom were vaccinated against COVID-19. Semi-structured interviews, conducted in English or Krio, were audio recorded, transcribed verbatim and analyzed using thematic analysis to identify key themes. Three themes were identified: positive vaccination experiences exceeding initial expectations, strong belief in the vaccine's protective benefits and active roles in vaccine advocacy. Despite initial hesitations due to concerns over potential adverse effects, participants reported no significant issues post-vaccination, fostering trust in vaccine safety and effectiveness. Healthcare workers' positive post-vaccination experiences significantly bolster their vaccine advocacy, influencing their recommendations to patients, friends, families, colleagues and community members. This study highlights the importance of understanding and leveraging healthcare workers' experiences to enhance public trust and vaccine uptake, crucial for pandemic response efforts in LMICs.
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Vacunas contra la COVID-19 , COVID-19 , Personal de Salud , Investigación Cualitativa , Humanos , Sierra Leona , COVID-19/prevención & control , Femenino , Masculino , Personal de Salud/psicología , Vacunas contra la COVID-19/administración & dosificación , Adulto , Persona de Mediana Edad , SARS-CoV-2 , Vacilación a la Vacunación/psicología , Vacunación/psicología , Actitud del Personal de Salud , Entrevistas como AsuntoRESUMEN
PURPOSE: Obtain the perspectives of people with Parkinson's disease (PwPD) and their care partners (CPs) about their lived experiences with Parkinson's Disease (PD) to characterize a new model of care that meets their biopsychosocial and healthcare needs. METHODS: This phenomenological study included semi-structured focus groups exploring PD diagnosis/care experiences and conceptualizations of an ideal model of care among PwPD and CPs. Data were analyzed via thematic analysis. RESULTS: Twenty-five individuals (PwPD, n = 18; CPs, n = 7) participated across four focus groups. Researchers developed four themes to describe participants' lived experience with, barriers to, and needs for PD care. These themes characterize key hopes for care as: 1) person-centered, 2) coordinated, 3) provides access to education and information, and 4) builds on the benefits of community. CONCLUSIONS: Participants emphasized that, beyond clinical interactions and diagnosis-centered conversations, they wished for holistic healthcare that acknowledged the larger picture of their life with PD. An ideal model of care for PwPD should aim to be person centered, maximize collaboration and coordination across multiple disciplines, provide access to a wide range of information and resources, refer to community centers and support groups, and be designed with ease of navigation in mind.
Health professionals need to inquire about an individual's lived experience and employ strategies that center the person and personalizes their care while also integrating a coordinated interdisciplinary approach.An ideal model of care needs to integrate healthcare professionals as part of a larger care team that includes the person with Parkinson's disease, and facilitates communication and planning with those team membersAn ideal model of care needs to integrate the larger community and seek to refer and build relationships with health professionals, organizations, and non-medical providers that will facilitate holistic care and advocate for people with Parkinson's disease.
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The COVID-19 pandemic and recent incidents of social injustice exposed the systemic racism and discrimination in health care and clinical research that perpetuate systemic inequities. This perspective utilizes the acronym JEDI (justice, equity, diversity, and inclusion) as a vision for addressing inequities in physical therapy research. The need to go beyond diversity and focus on inclusion, equity, and justice is emphasized to achieve transformation within physical therapy research. The prevailing research paradigms are examined, acknowledging that research can perpetuate inequities and reinforcing the importance of integrating JEDI principles into the research process. The underrepresentation of diverse researchers in physical therapy is discussed, as well as the barriers faced by underrepresented researchers and research participants. Funding disparities are also highlighted, emphasizing the need for JEDI principles in research funding practices. How other health professions' associations are addressing JEDI in research is also explored. The authors propose a framework for action, utilizing the concepts of the socioecological model to identify gaps in JEDI within physical therapy research at different levels of influence and conclude by emphasizing the importance of justice in dismantling inequitable systems and urge the physical therapy research community to become JEDI warriors to bring about transformative change. IMPACT: By championing cultures that value justice, equity, diversity, and inclusion, individuals within the physical therapy research community have the potential to ignite a powerful transformation in society. The authors envision a future where JEDI warriors emerge, embracing the spirit of "Do or do not. There is no try," to forge a research community that is inclusive for all.1 Drawing inspiration from this mindset, this perspective seeks to empower individuals to harness the force of a JEDI warrior, fostering cultures that value justice, embrace inclusive methodologies, and ensure equitable access to resources and opportunities for researchers and participants.