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Functional neurological disorder (FND) remains inadequately included in policy and research in various healthcare settings, including Canada, where patient voices and lived experiences have yet to be systematically explored. Hence, the study aimed to analyze patients’ and care partners’ challenges with the healthcare system in Ontario, Canada, and their perspectives on how to improve FND care.
Methods:
This qualitative study explored the lived experiences of individuals with FND in Ontario, Canada, using a descriptive approach informed by patient journey mapping. Two focus groups were conducted with 11 patients and 2 care partners, and data were analyzed inductively using thematic analysis via NVivo. Ethical approval was obtained, and all participants provided informed consent.
Results:
Participants reported prolonged diagnostic delays (mean: 4.8 years), limited access to specialists and widespread lack of FND knowledge among healthcare providers. Three major challenges emerged: recurrently seeking care, searching for a diagnosis and accessing treatment – each marked by systemic gaps, stigma and emotional distress. Patients described being misdiagnosed, dismissed and forced to self-advocate, often relying on personal research to understand their condition. Treatment access was hindered by high costs, lack of public funding and limited availability of FND-informed services. Participants recommended improvements in education, integrated service programs, patient-led advocacy and sustainable funding to address these gaps.
Conclusion:
This study highlights the urgent need for systemic reform in FND care, as patients and families face prolonged diagnostic delays, fragmented services and widespread stigma. Participant-driven recommendations are crucial for consideration by healthcare professionals and policymakers.
This qualitative study explores the contraceptive use behaviours among women with disabilities in low-resource settings in Ghana, a group whose reproductive health needs are often overlooked in mainstream family planning programmes. Sixteen women with visual, physical, and hearing impairments in Apam, Central Region, were purposively selected to participate in semi-structured in-depth interviews conducted in their preferred languages, including Ghanaian Sign Language. Reflexive thematic analysis was used to identify key patterns in the data, revealing four main themes: (1) pathways for acquiring contraceptive knowledge, which included institutional outreach, maternal health visits, and informal peer networks; (2) determinants of non-utilisation, such as fear of side effects, religious stigma, and the desire to have children for future caregiving support; (3) drivers of modern contraceptive uptake, including the pursuit of educational and vocational goals, partner support, and the desire to prevent obstetric trauma; and (4) structural and systemic health inequalities, characterised by communication barriers, inaccessible physical infrastructure, and inconsistent provider attitudes. The findings advance scientific knowledge by moving beyond a simple narrative of unmet need to illustrate how women with disabilities exercise reproductive agency within a complex landscape of intersecting personal, social, and structural constraints. The novel findings highlight the dual role of informal networks in disseminating both accurate information and persistent myths, as well as the nuanced ways in which fertility is viewed as a long-term survival strategy in the absence of robust social support. These insights inform policy by underscoring the urgent need for disability-inclusive family planning services. This requires a multi-pronged approach that includes accessible communication through sign language interpretation, disability-sensitivity training for healthcare workers, retrofitting health facilities to improve physical access, and linking contraceptive services with broader social protection programmes to address the root causes of non-use.
Chapter 5 recounts interviews conducted with Cuban lawyers and law students regarding how they understand law, legal reasoning, and social change. It identifies key differences in the assumptions of the interviewees and the interviewers.
Single childhood is a growing social phenomenon in Iran that occurs under the influence of various factors that need to be identified. Therefore, the current research was conducted to explain the reasons behind only single children in Western Iran. This qualitative research was conducted using a conventional qualitative content analysis approach in Lorestan province, western Iran. The study participants were parents with one child who no longer wanted to have more children. Key informants were also involved in the study. To identify participants, purposive and snowball sampling were used. Data were collected through semi-structured interviews with 29 couples with one child and seven key informants until saturation was reached. Data analysis was conducted using the Graneheim and Lundman qualitative content analysis approach with the assistance of MAXQDA software (version 2020). Analysis of the interviews obtained four categories, 16 subcategories, and 205 initial codes. The main categories were (1) past negative experiences (concerns about the mother and child’s health, negative experiences with the first child), (2) weak support systems (lack of a supportive environment, dissatisfaction with married life), (3) changing social discourses on childbearing and parenting (spread of individualism, normalization of single-childing in society, considering having a child as more of a limitation, formation of new gender attitudes among women, changes in parental expectations of children, fading of religious beliefs encouraging childbearing, idealism in child-rearing, increased knowledge and access to contraceptives), and (4) inability to overcome challenges (financial challenges, lack of a suitable living environment, social hopelessness, missing opportunities for re-parenthood). Single-child families represent a complex phenomenon driven by a multitude of factors, necessitating interventions at the individual, family, and societal levels to address it. Enhancing financial support, expanding social welfare programmes, emphasizing religious norms that encourage childbearing, strengthening family bonds, and providing appropriate parenting models can potentially increase fertility intentions and behaviours.
Les interventions basées sur la pleine conscience (IBPC) sont reconnues comme des approches pertinentes auprès de personnes vieillissantes à risque de déclin cognitif. Toutefois, peu d’études ont exploré l’expérience vécue de participants présentant un déclin cognitif accompagné de symptômes anxiodépressifs. Cette étude qualitative vise à comprendre l’expérience de 13 adultes de 55 ans et plus ayant participé à une IBPC de groupe. Des entrevues semi-dirigées menées après l’intervention ont été analysées selon une approche inductive pour dégager les thèmes émergents. Les résultats révèlent une trajectoire expérientielle en trois temps : une surprise initiale face aux pratiques, une évolution progressive de leur vécu, tant individuel qu’interpersonnel, notamment grâce au groupe, puis un sentiment d’élucidation et de satisfaction à l’égard du programme. L’analyse met en lumière des processus individuels et relationnels importants, soulignant la nécessité de considérer divers facteurs dans l’étude des mécanismes et effets des IBPC auprès des personnes vieillissantes.
This study aimed to explore the earthquake-related experiences of older adults relocated from nursing homes in earthquake-affected regions, the difficulties they faced in adapting to their new environments, and the post-earthquake support they received.
Methods
This phenomenological research was conducted through face-to-face semi-structured interviews with 26 participants who had to relocate to a nursing home in southern Turkiye after the earthquake. Qualitative content analysis was based on a deductive and inductive approach.
Results
After the 2023 earthquake in Turkiye, participants experienced a range of emotions and attitudes, including trust, satisfaction, and happiness, as well as fear and anxiety. They experienced social isolation and difficulty adapting to the new nursing home’s dietary habits, climate, and living environment. Although participants received psychosocial and health support services after the earthquake, they recommended organizing more sociocultural activities and providing training on earthquake preparedness.
Conclusion
The findings revealed that emotional distress, adaptation difficulties, and social isolation were prominent challenges during the post-earthquake relocation process. Comprehensive post-earthquake care models are required, which should address older catastrophe survivors’ emotional and social well-being in addition to their physical health.
Health care workers (HCWs) are vital in disaster response. This study explores HCWs’ experiences delivering care in the earthquake-affected zone in Türkiye.
Methods
A qualitative study with a phenomenological design was conducted. Eighteen HCWs, including physicians, nurses, and National Medical Rescue Team (UMKE) members, were selected through maximum variation sampling. Data were collected through semi-structured interviews and analyzed thematically using Braun and Clarke’s 6-phase approach, following COREQ guidelines.
Results
Three periods (pre-arrival, in the earthquake zone, and post-departure) and 8 themes were identified. In the pre-arrival phase, emotional symptoms and general organization were the main themes. In the earthquake zone, physical symptoms, basic needs, health care organization, health care delivery, and other services were prominent. The post-departure phase focused on emotional symptoms and return to routine work. Overall, emotional difficulties persisted throughout all phases, while organizational problems were concentrated in the pre-arrival and in the earthquake zone periods.
Conclusion
HCWs experienced emotional challenges across all periods and organizational problems in the pre-arrival and in the earthquake zone period. Clear information before arrival, structured orientation upon arrival, balanced staff distribution, and continuous psychological support throughout all phases are essential to protect HCWs’ well-being and sustain health care delivery during disasters.
Viewing disability as a form of social capital, this paper examines the unique contribution of volunteers with disabilities and the meaning that volunteering holds for them. Of the 35 volunteers with disabilities interviewed, all were volunteering in self-help organizations for people with disabilities, half of them in administrative and leadership roles. The interviews revealed rich and active stories. Their areas of activity were diverse and encompassed various organizations. The volunteers crossed over from the role of merely extending services to their beneficiaries to becoming activists for political and social change. Their practices suggest that the volunteers’ self-identity as individuals with disabilities has shaped their supportive approach. Therefore, understanding their unique resources as people with disabilities is key to developing an organizational culture that promotes integrative recruitment of volunteers.
It is now acknowledged that possible negative effects of cancer therapies on future reproductive autonomy are a major concern. In the bioethics literature, some advocate that the child’s right to fertility preservation (FP) should be recognized as a right to an open future.
Research objectives
The aim of this qualitative study is to (1) explore pediatric oncologists’ perceptions regarding barriers and facilitators of OTC in prepubertal girls and (2) analyze the ethical, legal, social, and policy implications of these barriers and facilitators in Canada and France.
Participants and research design
Between November 2022 and August 2023, 10 French and 6 Canadian oncopediatricians took part in semi-directed interviews. The content of the interviews was analyzed using thematic content analysis.
Findings
All the participants emphasized the importance of FP, describing it as a fundamental right and central part of care. However, they identified ethical issues associated with the cost and the uncertainties of ovarian tissue cryopreservation (OTC). The majority thought that OTC should be covered by the public healthcare system to promote equity of access. French oncopediatricians of this study considered OTC to be standard of care, while the majority of Canadian oncopediatricians still considered it experimental, due to the risk of reintroducing malignant cells.
Discussion/conclusions
The results highlight the importance of FP for prepubertal girls as a right, linked to the child’s right to an open future, as described in bioethics literature. According to these findings, the fact that OTC is not systematically discussed, offered, or not covered by the healthcare system constitutes a barrier and fails to protect patients, who may experience future infertility as a consequence of their treatment, thus curtailing their reproductive autonomy.
To successfully recruit and retain faculty members from underrepresented backgrounds (URBs), we need to understand the factors that attract them to research careers in the first place. However, scholarship in this area has focused largely on students who are contemplating research careers rather than faculty members who are currently in such careers.
Methods:
This study explores the career motivations of early-career health researchers (faculty members and postdoctoral fellows) from URBs. It was conducted as part of a cluster randomized trial across 25 academic institutions investigating a support intervention. We conducted 1-hour semi-structured qualitative interviews with scholars from URBs in both the intervention and control arms of the trial. To our knowledge, this is the largest qualitative study of early-career faculty members from URBs to date.
Results:
Seventy-eight individuals were interviewed. Our analysis revealed six key themes pertinent to participants’ motivations to pursue research careers: (1) love of science; (2) making a larger impact; (3) happenstance and economic considerations; (4) family, community, and a path out of poverty; (5) the role of mentors and role models; and (6) support programs for scholars from URBs.
Conclusions:
Our results align with prior studies while offering new insights into the motivations of URB faculty members in research careers. These insights can and should inform the design of programs to both recruit and retain URM faculty members in research careers.
Bipolar disorder often goes unrecognised for several years, leading to delayed treatment and negative outcomes. To help address this, we have developed a novel telehealth-based group psychoeducational and resilience enhancement programme for individuals at high risk for bipolar disorder (PREP-BD), aimed at improving help-seeking among adolescents and young adults at risk of developing bipolar disorder.
Aims
The purpose of the current study was to explore the perspectives of at-risk youth, their families and group facilitators who participated in the feasibility trial of PREP-BD.
Method
Group and individual semi-structured feedback sessions were conducted with the participants (n = 21) of the programme, their family members and the facilitators of PREP-BD. The questions covered their experiences, opinions on the programme’s structure and content and suggestions for improvement. Feedback sessions were transcribed and analysed qualitatively using inductive content analysis.
Results
Overall feedback was positive, with participants and facilitators appreciating the informative and engaging nature of the sessions. Some participants desired more actionable resources and complex content. Family members sought greater involvement and information about the programme. The online format was valued for convenience, but was also viewed as a barrier by some to fostering deeper connections.
Conclusions
PREP-BD shows promise as a psychoeducational intervention for individuals at high risk for bipolar disorder. To enhance the programme’s effectiveness, future iterations should incorporate more nuanced content, provide additional practical guidance and address the limitations of the virtual setting. Continued evaluation and optimisation are crucial for ensuring the programme’s effectiveness as a tool for early intervention in bipolar disorder.
The numbers of robots in organizations grow at an increasing rate. However, very little is known about how robotization (i.e., the implementation of robots at work) affects the work characteristics of the jobs it impacts. This qualitative study focuses on exploring the influence of industrial robots on perceived work characteristics. Eighteen semi-structured interviews were conducted with production line workers and supervisors of four Spanish manufacturing companies. Results showed benefits in physical demands, perceived skill variety, and improved social relationships. We found inconsistent results for job complexity, task variety, and autonomy. Based on our findings, we suggest specific moderators that may be influencing the relationship between robotization and some work characteristics. The findings of our study contribute to the existing literature by expanding work design theory, providing empirical evidence on the influence of an antecedent of work characteristics (robotization), and suggesting several moderators.
Comprising the largest group of health care professionals, nurses play a great role and assume many responsibilities during disaster periods, when the public needs health care services the most. The aim of this study was to reveal the experiences of nurses assigned to the disaster area during relief efforts after the February 6, 2023 earthquakes in Türkiye.
Methods
This qualitative and descriptive study used the maximum variation sampling method, one of the purposive sampling methods, and was completed with 20 nurses. Data were analyzed using inductive content analysis.
Results
Four main themes emerged from the experiences of the nurses who provided health care services in the disaster area: experiences related to pre-mission processes, experiences during the mission, post-mission experiences, and recommendations for disaster preparedness.
Conclusions
Nurses’ experiences and suggestions revealed in this study may inform future disaster preparedness and disaster management plans, and this study’s results point to the need for the development of professional nursing skills in disaster management.
Frailty in older adults with cancer is complex, evolving, and often overlooked in care. This qualitative study explored how frailty is experienced and reported using patient-reported outcome measures (PROMs) and visualized over time through journey maps. Eleven participants (65+) completed the Comprehensive Frailty Assessment Instrument (CFAI) and semi-structured interviews. Individual journey maps combined CFAI scores with personal narratives to track changes in physical, mental, and social aspects of frailty over time. While PROMs showed variability in frailty severity, narratives revealed discrepancies, such as low frailty scores despite significant treatment-related challenges. Fatigue, emotional distress, and isolation were common during treatment, with lasting impacts post-treatment. Findings suggest PROMs alone may not fully capture lived experience. Integrating narrative dialogue provides a more person-centred approach to frailty assessment and care planning.
Breastfeeding assumes critical importance in the aftermath of disasters such as earthquakes, as it provides all the essential nutrients required by infants, enhances their immune systems, and mitigates the risks associated with using contaminated water for formula preparation. This study investigates the experiences of breastfeeding mothers living in temporary shelters within the earthquake-affected region.
Methods
A qualitative approach was employed to identify the challenges faced by breastfeeding mothers. The study’s sample included 14 mothers who met the inclusion criteria. Data were collected through a semi-structured interview form and analyzed using MAXQDA qualitative data analysis software, following Colaizzi’s 7-step method.
Results
The mothers in the study ranged in age from 31-37 years, with their infants ranging from 10 days-6 months old. Based on the data gathered from the interviews, 4 main themes were identified: basic life needs (with sub-themes of housing, warmth, nutrition, hygiene/sanitation, sleep, and clothing), emotional difficulties (with sub-themes of shock, fear, crying, and stress), care difficulties (with sub-themes of challenges in accessing medication, constipation, diarrhea, reduced comfort, and decreased urine output), and breastfeeding difficulties (with sub-themes of breast rejection, breast engorgement, baby feeding issues, reduced milk production or interruption, and privacy concerns).
Conclusions
From the onset of the earthquake, mothers encountered significant challenges in breastfeeding their infants. In emergency and disaster situations, it is imperative that experienced health care personnel offer essential information and support to assist these mothers in navigating the difficulties they face.
La maltraitance organisationnelle envers les personnes aînées est présente dans différentes organisations, y compris dans le secteur de la santé et des services sociaux. Elle peut entraîner des conséquences négatives importantes sur la santé mentale et physique, ainsi que la qualité de vie, des personnes aînées qui la subissent. L’objectif de cet article est de présenter les enjeux éthiques liés à la maltraitance organisationnelle perpétrée envers les personnes aînées qui reçoivent des services de soutien à domicile. Une approche d’inspiration phénoménologique utilisée auprès d’ergothérapeutes pour identifier les enjeux éthiques de leur pratique a mené à une analyse des enjeux éthiques spécifiquement liés à des situations de maltraitance organisationnelle. Quinze ergothérapeutes (n=15) œuvrant en soutien à domicile au Québec ont été rencontrés dans le cadre d’entretiens individuels. L’analyse a été effectuée en utilisant une perspective écologique. Les résultats de l’analyse révèlent plusieurs enjeux éthiques complexes de nature micro, méso et macrosystémiques, dont l’abandon administratif des bonnes pratiques, l’accès déficitaire aux services, la chosification de l’aîné, la dépersonnalisation des services et la tolérance des violences.
The Garo tribe, one of a major indigenous communities of Meghalaya, India, relies heavily on their traditional health practices. This research investigates the healthcare-seeking behaviour of Garo women, their health concerns, their indigenous medical knowledge, and their reasons for preferring traditional over modern medicines. Conducted in East Garo Hills, Meghalaya, quantitative data (N = 96) were randomly collected from Garo women aged 15–49 through interviews to understand their health-seeking behaviour. Following a preliminary analysis, qualitative data (N = 12) were gathered through in-depth interviews to identify common illnesses, dimensions of traditional medicines, and reasons for dependency on them. Thematic analysis was performed using Atlas Ti. The result shows that almost 84% of Garo women (N = 86) seek treatment from Ojha (traditional healer) for achik (traditional) medicine, with only 6% using modern health facilities and 10% relying on herbal home remedies. Garo women rely on their age-old traditional remedies for health issues, irrespective of their educational or economic status. From the qualitative findings, this study explores the Garo tribe’s unique traditional medicine, known as ‘achik medicine’, prepared through local herbs and plants, and is disseminated by traditional healers, or ‘ojhas’, whose knowledge is generational. Moreover, every Garo household possesses medicinal plants, and all are knowledgeable about their use. Major health issues faced by Garo women are menstrual disorders, post-delivery weakness, fever with severe headache and jaundice. Reasons for using achik medicines are more effectiveness than modern medicines, cultural identity, preference for natural remedies, efficiency of Ojhas, availability, accessibility, and affordability of Ojhas. Meanwhile, the reasons for using limited use of modern healthcare facilities are poor quality of service and remote location. This study underscores the importance of preserving indigenous knowledge systems and respecting cultural heritage while ensuring the well-being of marginalised communities. Additionally, it highlights the need to improve modern healthcare quality and public transportation in the region.
Marriage with teenage girls is an important health and social challenge, which is caused by various factors. Considering that no research has been done to show the reasons for men’s desire to marry teenage girls, this research was conducted with the aim of identifying the reasons why men marry teenage girls in western Iran. This qualitative research was conducted with the conventional content analysis approach among 37 men in western Iran who married to girls under the age of 18. Targeted, theoretical, and snowball sampling methods were used to reach the participants. To collect data, semi-structured interviews were used both in-person (20 people) and online (17 people). Data analysis was done with Graneheim and Lundman approach and checking the accuracy and strength of the results with Guba and Lincoln criteria. One core category, 9 subcategories, and 88 initial codes were obtained from the data analysis. The core category, foresight along with desired upbringing, included the subcategories of getting sure of purity, to bring up the girl, seeking sexual pleasure, dominating the wife, low expectations, appropriate fertility, encouragement of social organizations and families, following models, and cultural beliefs. The reasons for men marrying teenage girls are rooted in personality traits, family encouragement, and the cultural and social context of the society. Marriage with teenage girls can be prevented by intervening at different levels and taking measures such as training and raising men’s awareness about the consequences of marrying teenage girls, changing men’s cultural and gender beliefs, raising the awareness of parents and social organizations about the adverse effects of child marriage, and establishing appropriate laws.
The European Union receives thousands of unaccompanied irregular migrant minors every year, but little is known about their life experiences during the migration process. The aim of this study is to describe their experiences as minors when they arrived in Spain in small boats, which will help to understand their psychosocial and health needs. A descriptive qualitative study was undertaken. In-depth interviews were conducted with 18 unaccompanied irregular migrants (15 men and 3 women) from different African countries with a mean age of 20.05 years (SD = 2.77). Thematic analysis was used to analyse the data. Three main themes emerged such as (1) unaccompanied irregular migrant minors: risking it all for a better life; (2) redefining your identity as a means of adaptation and (3) obtaining legal status to avoid deportation. Unaccompanied migrant minors risk their lives on the migration journey, but do not always find better conditions in the destination country. The unaccompanied irregular migrant minors are forced to rebuild their lives at a high cost; they experience rejection from the host society and their culture of origin, which has a negative impact on their physical and psychological health over time.
By 2025, over eight million UK households will be receiving Universal Credit (UC). Introduced in 2013 to simplify the benefit system and improve work incentives for working age adults, UC has been criticised for causing hardship and exacerbating inequalities. There is limited research on children and young people’s (CYP) views of UC, as well as its health and social impacts. In this pilot qualitative study, creative methods were used to understand the views of UC among CYP (n = 40) aged 12–16 years in North East England. Findings showed diverse and nuanced understanding of UC as well as contested views about conditionality, sanctions, lower UC rates for under-25s and the two-child limit alongside recognition of the stigma and shame associated with benefits. While CYP value paid employment, they stressed the importance of minimum income standards and tailored employment support for UC claimants, taking account of their personal, health and family circumstances. Findings suggest CYP are aware when parents and carers are struggling financially and may try to ease pressures on parents. Debates about principles of equality, fairness, social justice and deservingness were present in young people’s accounts. We conclude by exploring future directions for a CYP-centred approach to social policy.