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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: 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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Recém-Nascido Prematuro , Entrevistas como Assunto , Poder Familiar , Pais , Pesquisa Qualitativa , Humanos , Pais/psicologia , Feminino , Recém-Nascido , Masculino , Poder Familiar/psicologia , Adulto , Unidades de Terapia Intensiva NeonatalRESUMO
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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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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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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Pesquisa Qualitativa , Projetos de Pesquisa , Humanos , Grupos Focais , Teoria Fundamentada , Coleta de DadosRESUMO
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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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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Vacinas contra COVID-19 , COVID-19 , Pessoal de Saúde , Pesquisa Qualitativa , Humanos , Serra Leoa , COVID-19/prevenção & controle , Feminino , Masculino , Pessoal de Saúde/psicologia , Vacinas contra COVID-19/administração & dosagem , Adulto , Pessoa de Meia-Idade , SARS-CoV-2 , Hesitação Vacinal/psicologia , Vacinação/psicologia , Atitude do Pessoal de Saúde , Entrevistas como AssuntoRESUMO
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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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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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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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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PURPOSE: Children with Special Health Care Needs (CSHCN) may experience disruptions in education due to extended hospitalizations. The purpose of this study was to describe how CSHCN experience educational supports during inpatient rehabilitation and identify the ongoing challenges when planning to return to school. MATERIALS AND METHODS: Semi-structured focus groups were conducted with parents (n = 12), former patients (n = 20), and rehabilitation professionals (n = 8). RESULTS: Through qualitative thematic analysis based on descriptive phenomenology, we developed three themes: 1) Inpatient educational support such as instruction and schoolwork helped reduce the learning loss during hospitalization. However, these supports were sometimes complicated by lags in school approvals and challenges in coordination between systems. 2) Transition planning involved establishing necessary services to support CSHCN's educational and healthcare needs at school re-entry. However, families reported limited information and guidance as key barriers. 3) Dynamic courses of school re-entry required continued support after discharge. The participants recommended that reassessment and adjustment of transition plans were often necessary to account for evolving developmental and educational needs but were not always received. CONCLUSIONS: There is an ongoing need to improve communication between clinicians and educators, information for families, and long-term follow-up on the changing educational needs for CSHCN after rehabilitation.
School re-entry after extended hospitalization is challenging for children with special health care needs (CSHCN) due to school disruption, social disconnection, and change in functional abilities.The hospital-to-school transition processes include inpatient educational programs during hospitalization, pre-discharge transition planning, and the subsequent implementation and adjustment of transition plans to facilitate individualized school re-entry.Key areas in need of improving school re-entry include coordination between the hospital and school about rehabilitation and educational goals and information provided to families about transition processes, particularly for newly acquired health conditions.A common need expressed by parents and CSHCN is to simplify and accelerate the process to establish services that support children's educational and healthcare needs.
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AIMS: Many older persons do not think of themselves as "patients" but as persons wishing to live as actively as possible for as long as possible. However, most health-related quality of life (HRQL) measures were developed for use with clinical populations. The aim of this project was to fill that gap and to develop, for international use, a measure of what matters to older persons as they age and seek to remain as active as possible, Older Persons for Active Living (OPAL). METHODS: For content development, interviews about active living were conducted with older persons from Canada, USA, UK, and the Netherlands in English, French, Spanish and Dutch, respectively with subsequent thematic analysis and harmonization. RESULTS: Analyses of transcripts from 148 older persons revealed that active living was a "way of being" and not merely doing activities. Saturation was reached and a total of 59 content areas were identified. After grouping similar "ways" together and after conducting a consensus rating of importance, 19 unique and important "ways" remained. In some languages, formulating was challenging for three of the 19, resulting in changes to two English words and dropping two other words, yielding a final list of 17 "ways of being" with harmonized wording in 4 languages. CONCLUSION: This study underscores the significance of listening to older adults and highlights the importance of considering linguistic and cultural nuances in measure development.
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OBJECTIVES: Speech-language pathologists (SLPs) and laryngologists often work closely in interdisciplinary settings evaluating and treating patients with voice, swallowing, and airway disorders. This collaboration is integral to providing optimum patient care. We theorize that trust is an essential component of this relationship and contributes to effective patient care and professional satisfaction. There is currently no literature that explores the development and role of trust in this unique interprofessional relationship. We aim to explore the SLP and laryngologist interprofessional relationship and the development and role of trust in that relationship. STUDY DESIGN: Qualitative Realist Thematic Analysis. METHODS: Thematic analysis of semistructured qualitative interviews was performed to explore the relationship between SLPs and laryngologists. Through purposive sampling from November 2022-January 2023, we recruited SLPs (n = 10) and laryngologists (n = 10) from 12 centers with varying years of practice, practice setting (academic or private), geographic location, and team structures. RESULTS: Trust between SLPs and laryngologists is comprised of confidence in (1) ability (clinical judgment, technical skill), (2) benevolence, and (3) integrity. Trust formation is enhanced by frequency and quality of communication, physical proximity, and reduction of practical barriers (scheduling, billing, departmental structure). Role negotiation was not identified as a factor. The presence of all three components of trust contributes to job satisfaction, perceptions of patient experience and care outcomes, and the willingness to collaborate in academic areas beyond clinical care. CONCLUSIONS: All three elements (ability, benevolence, integrity) must be present for trust in an interprofessional relationship between SLPs and laryngologists, and formation of trust is facilitated by robust communication, physical proximity, and reduction of practical barriers to collaboration. The lack of these elements and lack of trust between the two professions can negatively impact collaboration, job satisfaction, and patient care outcomes, contributing to inefficiencies in patient care.
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BACKGROUND: Pregnancy loss that includes both miscarriage and stillbirth cause significant psychological distress for women including anxiety, depression, and grief that persist long after physical recovery. This study focuses on the experiences of women in Pakistan, where pregnancy loss rates are high. OBJECTIVE: To explore how pregnant women with anxiety symptoms and a history of pregnancy loss perceive their past experiences with the loss and how it affects overall well-being in their current pregnancy. DESIGN: Qualitative methods were used to explore the impact of previous pregnancy loss on the well-being of pregnant women. SETTING: This qualitative research was embedded within a randomized control trial conducted in a tertiary care facility in Rawalpindi, Pakistan. PARTICIPANTS: Data were collected through in-depth interviews with 18 pregnant women who had experienced pregnancy loss. Data was analyzed using Framework Analysis. FINDINGS: The findings revealed several factors influencing participants' well-being during pregnancies that resulted in a loss, such as unsupportive and abusive environments, unintended pregnancies, certain superstitious beliefs, poor health, and lack of access to quality healthcare. The study also highlighted the adverse impact of previous pregnancy loss on the ongoing pregnancy, including deterioration of physical and mental health and aversion of healthcare services. However, some participants reported positive changes in medical and self-care practices and an enhanced faith and reliance on destiny in their subsequent pregnancies. CONCLUSION: Our study highlights the lasting impact of past pregnancy loss on subsequent pregnancies, affecting overall wellbeing and leading to healthcare avoidance. We identified persistent anxiety along with positive outcomes like enhanced medical practices and strengthened faith. Results suggest the need for culturally responsive interventions to support the overall well-being of anxious pregnant women with a history of pregnancy loss in resource-constrained settings.
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Capability wellbeing can potentially provide a holistic outcome for health economic evaluation and the capability approach seems promising for African countries. As yet there is no work that has explored the evaluative space needed for health and care decision making at the whole population level and procedures that merely translate existing measures developed in the global north to contexts in the global south risk embedding structural inequalities. This work seeks to elicit the concepts within the capability wellbeing evaluative space for general adult populations in Tanzania and Malawi. Semi-structured interviews with 68 participants across Tanzania and Malawi were conducted between October 2021 and July 2022. Analysis used thematic coding frames and the writing of analytic accounts. Interview schedules were common across the two country settings, however data collection and analysis were conducted independently by two separate teams and only brought together once it was clear that the data from the two countries was sufficiently aligned for a single analysis. Eight common attributes of capability wellbeing were found across the two countries: financial security; basic needs; achievement and personal development; attachment, love and friendship; participation in community activities; faith and spirituality; health; making decisions without unwanted interference. These attributes can be used to generate outcome measures for use in economic evaluations comparing alternative health interventions. By centring the voices of Tanzanians and Malawians in the construction of attributes that describe a good life, the research can facilitate greater equity within economic evaluations across different global settings.
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INTRODUCTION: Within 10 years of multiple sclerosis (MS) progression, nearly all women will have experienced symptoms associated with bladder, bowel and/or sexual health. Yet despite the impact these symptoms have on physical, psychological and social well-being, it remains an underserved area within the UK healthcare system. STUDY AIM: This research employs a participatory research approach framed within the principles of intersectional feminism to collaboratively investigate the lived experiences of pelvic floor dysfunction (PFD) and healthcare interactions among UK-based women with MS. SETTING AND PARTICIPANTS: Women residing in the United Kingdom with MS were invited to participate in online interviews facilitated by the primary author. ANALYSIS: A thematic framework analysis offering a structured yet adaptable approach to data collection and interpretation. RESULTS: One focus group involving four women with MS and seven individual, one-to-one interviews with women with MS provided insights into the challenges associated with navigating both MS and PFD. Four main themes included: Navigating MS and PFD; Cycles of Control; Mind, Mobility and Bladder Embodiment; Silenced Voices: The Impact of Taboos/Stigma/Dismissal on Preventing Access and Resistance through Collective Community. Six subthemes were also identified. Taken together, these themes cumulatively reflect PFD as an unmet healthcare need. CONCLUSION: Our findings underscore negative healthcare experiences, inadequate information provision and unmet needs related to PFD, emphasising the compounding effects of gender and disability biases. IMPACT: We hope that these insights can lay the groundwork for developing tailored therapeutic interventions and improved PFD healthcare for women with MS. Potential solutions include using existing MS support communities. PUBLIC CONTRIBUTIONS: Women with MS were actively involved in co-producing interview scripts for one-to-one interviews. The primary author shared study findings at an MS group event, engaging in discussions with over 30 individuals, including people with MS and their loved ones. MS advocates played a pivotal role in contextualising the study within the broader lived experience of MS.