Search

The life experiences of children with cancer and their parents as individuals have been well documented in literature. However, little is known about their experiences as child-parent dyads in Pakistan regarding these children's quality of life. Thus, the study was conducted in the context of the family-centric society of Pakistan. In-depth interviews were conducted with 28 participants (14 child-parent dyads), comprising 9 female and 5 male children receiving cancer treatment and 8 mothers and 6 fathers (primary caregivers). All the participants were Muslims and hailed from diverse ethnic backgrounds, and most belonged to middle socioeconomic backgrounds. Thematic analysis was performed using Braun and Clarke's (2006) framework, which revealed four themes: (1) Stress, Fears, and Optimism; (2) Reactions to Restrictions; (3) Adaptation and Coping; and (4) Support Structure and Mechanisms. The findings indicated that children's and parents' daily lives were affected in various ways during the children's cancer journey. They faced several challenges which impacted their well-being. Particularly, the children considered their symptoms as restrictions in the way of carrying out their routine lives. However, children and parents also elaborated on using different coping strategies, such as play, reminiscing the past, incorporating religious practices into their daily routines, and keeping a family-centred approach towards the child's care. The parents also recommended that cancer-specialised services and support groups should be accessible. Conclusively, these findings are useful for healthcare providers in giving family-centred care to afflicted families and devising innovative interventions that address the needs of children with cancer and improve their quality of life., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Mobile health (mHealth) interventions are increasingly used to address the challenges of living with HIV and engaging with antiretroviral therapy. A wealth of evidence supports the efficacy of mHealth in supporting living with HIV. Yet, there is a dearth of evidence on how mHealth improves outcomes, which features are effective, and why these work in a particular setting. This study uses stakeholder views, including patients, providers, peer supporters, counsellors, and program directors, to conceptualize how specific mHealth features could interact with contexts of living with HIV and mechanisms that shape engagement with treatment. The study is part of an ongoing research project on engagement with HIV care in Iran. We draw on the perspectives of recently diagnosed and more treatment-experienced patients and their providers, using purposive sampling, conducting 9 focus group discussions with a total of 66 participants, in addition to 17 interviews. Our findings suggest that mHealth designs that feature provider connection, proactive care, and privacy and personalization are expected to dilute the harsh contexts of living with HIV. We build on previously identified socioecological pathways that disrupt antiretroviral therapy in Iran and find that mHealth can enhance the relation between the health system and patients. Our findings suggest that personalized mHealth features and provisions can partially mitigate the compounded impacts of harsh socioecological pathways that impede treatment success in Iran. Our social constructivist study was augmented with realist-informed analysis and could have transferability to similar contexts that trigger similar mechanisms of treatment disruption., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Health professionals/clinicians interview people regularly as part of their role. However, a qualitative research interview differs considerably to a clinical interview. If clinicians approach qualitative research interviewing based on their expertise in clinical interviewing, it could cause insufficiencies in qualitative data generation. In this reflection article, we, a team of four experienced clinical occupational therapists with no previous experience in qualitative research interviewing, share our experiences while learning to become qualitative research interviewers before undertaking our first qualitative research project. We engaged in self-directed reading, formal training on qualitative interviewing, and practice interviews and used peer feedback and reflection to prepare ourselves to conduct qualitative interviews. We drew upon the work-role transitions theory to work through our adjustment to the new role. Although we set out to "switch hats" as the research topic itself was not clinical, interviewing people on health-related topics will mean bringing our clinical instincts into our research role, while still recognizing the difference between a clinical and research interview. This article can inform experienced clinicians/novice qualitative researchers as they develop this new skillset., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Child sexual abuse (CSA) can have lasting negative impacts on one's sense of safety and trust, ultimately affecting the quality of relationships, and increasing the likelihood of future victimization experiences. The present study provides a qualitative description of the themes that were generated through interviews conducted with 23 mothers who experienced CSA (dis)continuity (12 continuity, 11 discontinuity). The mothers described a variety of experiences related to parent-child and romantic relationships and parenting behaviors, which could be further researched and targeted by interventions to reduce the risk of intergenerational cycles of maltreatment., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Elective genetic testing (EGT) programs that provide pharmacogenomic information to guide medication management and screen for medically actionable disease predispositions are emerging in a number of health systems. Primary care providers (PCPs) are at the forefront of test initiation, patient education, and management of EGT results. However, little research has examined the experiences of PCPs in health systems offering clinical EGT. We conducted semi-structured interviews, a sub-study of the larger mixed-methods Imagenetics Initiative, with 16 PCPs at a health system in the Midwest with a clinical EGT program supported by provider education, automated clinical decision support, and enhanced access to genetic specialists. The purpose of these interviews was to understand perceptions about the benefits and barriers of implementing EGT in clinical practice. Thematic analysis indicated that EGT is conceptualized similar to traditional diagnostic services. PCPs were generally favorable toward EGT; however, targeted education did not dispel misconceptions about the goals, results, and limitations of EGT. Most PCPs endorsed the potential utility of EGT. Pharmacogenomic profiling was seen as having more immediate impact for patients than screening for monogenic disease risks. PCPs reported that they weighed discussions about EGT against time limitations and the need to prioritize patients' existing health concerns. Regardless of their education levels and familiarity with genetics, PCPs desired additional educational resources and greater access to genetic specialists. Our study provides unique insight into PCPs' experiences with clinical EGT in health systems that have adopted EGT and highlights the practical challenges and potential opportunities of EGT integration., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

The far-reaching impact of the COVID-19 pandemic on Latinx communities is well-documented. This population has higher rates of COVID-19 infection and death compared with non-Latinx White Americans mainly due to long-standing problems related to Social Determinants of Health. Communication about issues such as health threats and safety measures are a vital part of public health, and need to be appropriate to the population of focus. To understand the effectiveness of public health communication to Latinx communities in Michigan during the COVID-19 pandemic, semi-structured interviews ( n = 16) and three focus groups ( n = 24 participants) were conducted virtually in 2021 across counties in Michigan deeply impacted by COVID-19: Washtenaw, Kent, Genesee, and Wayne. Participants shared some facilitating factors that supported effective health communication during the pandemic for their communities. For instance, in their experiences, religious and community leaders were especially effective in communicating information about the pandemic. They also expressed issues with English often being the only language of official communication; the need for bilingual options; and, the need for multiple channels of communication to reach as many people as possible. Participants also highlighted their concerns about inconsistent government communication and politicizing messages as a hindering factor that impacted effective health communication within their communities. Lessons from successes and failures experienced during the COVID-19 pandemic are vital to improving health outcomes for marginalized communities during public health crises. Future responses must ensure that public health communication is appropriate and effective for Latinx communities to better protect them., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

The past decades have seen large numbers of Somali women migrate across the globe. It is critical for healthcare workers in host countries to understand healthcare needs of Somali women. The majority of Somali female migrants experience female genital cutting (FGC). The most common type in Somalia is Type 3 or infibulation, the narrowing of the vaginal introitus. Deinfibulation opens the introitus to reduce poor health outcomes and/or allow for vaginal births. In this study, we explored the perspectives of Somali women living in the United States about deinfibulation. We recruited 75 Somali women who had experienced FGC through community-based participatory research methods. Bilingual community researchers conducted qualitative interviews in Somali or English. University faculty and community-based researchers coded data together in a participatory-analysis process. We identified four themes. (1) Personal Views: participants reported positive attitudes toward deinfibulation and varied on the appropriateness of deinfibulation before marriage. (2) Benefits: identified benefits included alleviation of health problems; improved sexual health, in particular reduction or prevention of sexual pain; and reclamation of body and womanhood. (3) Barriers: these included associated stigma and lack of knowledge by providers. (4) Decision-Making: most reported that husbands, healthcare providers, and elder female community members may provide advice about if and/or when to seek deinfibulation, though some felt deinfibulation decisions are solely up to the impacted woman. An ecological framework is used to frame the findings and identify the importance of healthcare workers in assisting women who have been infibulated make decisions., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Context: Incorporation of a palliative care approach is increasingly needed in primary care and nursing home care because most people with a life-limiting illness or frailty live there., Objectives: To explore patients' and relatives' experiences of palliative care at home and in nursing homes., Methods: Generic qualitative research in a purposive sample of patients with an estimated life expectancy of <1 year, receiving care at home or in a nursing home, and their relatives. Data is collected through semi-structured interviews and thematically analyzed by a multidisciplinary research team., Results: Seven patients and five relatives participated. Three essential elements of palliative care and their contributing factors emerged: 1) be seen (personal attention, alignment to who the patient is as a person, and feeling connected) 2) information needs (illness trajectory and multidimensional symptoms and concerns, and 3) ensuring continuity (single point of contact, availability of HCPs, and coordination of care). Patients and relatives experienced loss of control and safety if these essentials were not met, which depended largely on the practices of the individual health care professional., Conclusion: In both primary care and nursing home care, patients and relatives expressed the same essential elements of palliative care. They emphasized the importance of being recognized as a unique person beyond their patient status, receiving honest and clear information aligned with their preferences, and having care organized to ensure continuity. Adequate competence and skills are needed, together with a care organization that enables continuity to provide safe and person-centered care., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Similar to national trends, in Illinois, fatal opioid overdoses have risen. Black men (35+) outrank all other racial subgroups for the highest rate of fatal opioid overdoses in the state. To address this, Prevention First and the Illinois Department of Human Services developed a public health education campaign to support increasing enrollment in recovery services, with a focus on Black men (35+). Self-reported Black participants with opioid use disorder (OUD) made up the analytic sample. Study goals were to understand lived experiences of the campaign audience; investigate knowledge, attitudes, and beliefs regarding OUD and treatment; explore perceived barriers and facilitators to treatment; and evaluate messaging that showcased medication-assisted recovery (MAR) as a viable tool for treatment and recovery. Interviews were recorded and transcribed for thematic analysis. Participants shared long and cyclical journeys of use and recovery. Participants had low levels of knowledge of available treatment options and struggled to imagine themselves in recovery because of the fear of cravings and withdrawal. Messaging that was realistic about the cyclical nature of recovery, showed the varying options for MAR, and addressed cravings and withdrawals were well received. These findings illustrate the importance of understanding an audience and involving them in campaign development to create messaging that promotes behavior change and sustained health. Through the Decision Blocks strategic framework, we discovered information gaps, barriers to treatment, and practical solutions to increase access to treatment for Black men with OUD that has been limited due to inequities caused by structural racism., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: DJ, DW, PN, and GA are employed by Rescue Agency, which received funding through Prevention First for this study. KZ is employed by Prevention First, which funded this study from a grant administered by the Illinois Department of Human Services Division of Substance Use Prevention and Recovery.

With health equity growing as a priority within health care, health systems must transform that calling into action within their social, economic, and political environments. The current literature has not compared how different organizations manage the same health disparities intervention. This qualitative study aims to illustrate how different organizations navigated the implementation and sustainability of a hypertension disparities intervention by comparing experiences across Federally Qualified Health Centers (FQHCs), a private health system, and other non-clinical partnering organizations. As a study within a randomized controlled trial designed to reduce disparities in hypertension care, we conducted interviews with health care leaders before and after participation in the trial's multi-level intervention. Before participation, we interviewed five health care leaders representing five health systems. Following the intervention, we interviewed 14 leaders representing the five health systems and two partnering organizations. Discussions focused on intervention implementation and plans for sustainability. The primary considerations in implementation were appropriate staffing and multi-level organizational buy-in. When discussing long-term planning, health systems prioritized the structure of a stepped-care protocol incorporating community health workers (CHWs) and case managers. The sustainability of the CHW intervention at FQHCs was dependent on funding, whereas a private, non-FQHC physician practice network focused on expanding current resources for more patients. These findings serve as anticipatory guidance for organizations aiming to reduce hypertension disparities and provide support for policies that financially assist these interventions. Further investigation is warranted on the organizational factors that may influence the degree of success in eliminating health care disparities., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Research on the lived experiences of HIV survivors, including young people living with HIV, has primarily emphasized broader sociocultural concerns, such as stigmatization and cultural attitudes toward sexuality and gender, while giving less attention to the interconnectedness of these issues with the mental well-being of those affected by the illness. This study, drawing on relational ethnography including observations and interviews at four antiretroviral-administering healthcare facilities in Enugu State, southeast Nigeria, explores how young people living with HIV strive toward viral suppression and how they develop collaborative psychosocial support along with the global efforts in eradicating the HIV epidemic. We found that, in and between themselves, young people living with HIV weave for themselves a network of relationships, though discreetly, to foster and encourage survivorship. Such relatedness, where mutual trust and support have emerged and rebuilt HIV survivors' faith in a livable life, forms what we conceptualize as "sero-kinship." That is, sero-kinship, which focuses on how people create and change meanings in their everyday lives that ultimately contribute to controlling HIV and treatment management, forms an essential foundation on which a life with HIV becomes thinkable, bearable, then manageable, and acceptable., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Health inequalities can affect access and uptake to pulmonary rehabilitation (PR). An individual's protected characteristics (age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex and sexual orientation) may contribute to health inequalities. Healthcare professionals (HCPs) experiences of the inclusivity and representativeness of PR services and knowledge of protected characteristics are unknown, however are vital for the identification and resolution of health inequalities. This qualitative study explored HCPs understanding of protected characteristics and their perception of the inclusivity, representativeness and equitable benefit of their PR services., Methods: Semi-structured qualitative interviews were conducted in person or via videoconferencing with HCPs involved in PR from two healthcare providers. Interviews were analysed using reflexive thematic analysis., Results: 12 interviews were conducted with physiotherapists ( n = 6), occupational therapists ( n = 2), nurses ( n = 2) and exercise physiologists ( n = 2). Participants had a median (IRQ) age of 43 (13) and 75% ( n = 9) were female. Four themes were generated. 1: 'I don't really know as much as I should' [about protected characteristics]; 2: It's uncomfortable collecting protected characteristics…; 3: 'I don't think [service users] are as representative as they could be'; 4: A conventional rehabilitation programme does not meet the needs of all., Conclusions: This study highlighted several challenges in HCPs understanding of protected characteristics and the representativeness of PR that must be addressed to ensure equity. Strategies, to understand barriers in accessing PR that limit representativeness should be explored., Competing Interests: Declaration of conflicting interestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: H. Drover reports a role as NRAP Honorary Clinical Fellow on the Pulmonary Rehabilitation workstream. S.J. Singh reports roles as NIHR Senior Investigator, NRAP Clinical Lead for the Pulmonary Rehabilitation workstream and Editorial Strategy Board of Chronic Respiratory Disease. M.W. Orme reports a role on the Editorial Review Board of Chronic Respiratory Disease. E. Daynes reports lecture honoraria from Clinical Physio, honoraria from Neuroscience and Mental Health Institute (funding committee 2023) and roles with the BTS as chair of the Pulmonary Rehabilitation Specialist Advisory Group, Lead Expert Member NICE HTA EVA for Digital Rehabilitation, ATS Pulmonary Rehabilitation Assembly committee member, NRAP steering group, PRSAS steering group, CAHPR East Midlands Hub Lead, NIHR HS&DR funding committee member and Associate Editor of Chronic Respiratory Disease.

Introduction: Home care workers (HCWs) are paid caregivers who provide support to patients with chronic conditions and functional limitations. Additionally, they provide emotional support to patients and familial support. Although several qualitative studies have been conducted on HCWs, they focused more on studying prevalently the lived experiences about the workplace violence, the end of life, stressor and resilience, during the COVID-19 pandemic or focused more in dementia and heart failure, but not on feelings and working conditions., Methods: The study was carried out using Cohen's phenomenological methodology. The subjects were enrolled in several cities of Central Italy and interviewed with open questions to allow them full freedom of expression and asked to describe their lived experience of HCWs who helped people with chronic diseases. Each interview was recorded audio and lasted between 20 and 60 min. Researchers involved in the analysis were independently immersed in the data by reading and rereading the transcripts to gain a sense of the entire data set. The extrapolation of the themes followed. The individual researchers compared the various extrapolated themes., Results: Seventeen HCWs, all women, with a mean age of 54 years were enrolled in this study. All had more than a year (from 4 to 26 years) of experience in Italy, and almost the whole sample lived with the person they were assisting. Three themes were identified in the interviews: (1) feeling inadequate as a nurse, (2) feeling valued in this role, and (3) uncertain future. Feeling inadequate due to lack of training, difficulties related to the Italian language, or uncertainty about their future were topics identified by the HCWs., Conclusions: Since HCWs represent an important resource which, if properly trained, could positively influence the quality of life of the elderly population and a valid support for their families, understanding the lived experience can suggest interventions that could be implemented by a health care professional and provide evidence to inform political decision makers to increase the support for HCWs., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: The use of non-invasive ventilation (NIV) in patients with advanced cystic fibrosis (CF) has increased in recent years. Research evidence supports its clinical benefits, but less is known about the patients' experience of its long-term use in a domiciliary setting. Objective: To investigate patients' lived experience of using long-term domiciliary NIV. Methods: Semi-structured, qualitative interviews were conducted with adults with CF using long-term domiciliary NIV for respiratory failure. The data collected were subject to thematic analysis. Results: Nine adults (6 female), 5 of whom were awaiting lung transplantation, with a mean age of 39 years and mean FEV 1 per cent predicted of 28%, were recruited. Data analysis revealed 2 themes: gratitude, and determination despite challenges. Patients identified some troubling side effects from NIV but were grateful for its symptomatic relief and were determined to continue using it to improve their quality of life. Conclusions: Participants reported experiences of NIV to be generally positive in terms of symptom relief and quality of life. These findings provide an initial insight into patients' experience of NIV and have the potential to help guide and improve care., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Despite the safety and effectiveness of the COVID-19 vaccine, public hesitancy about receiving vaccination remains strong among disproportionately affected populations in the United States. To design more locally and culturally appropriate strategies, research is needed to explore the qualitative characteristics of vaccine hesitancy in these populations. Thus, we conducted in-depth interviews with 19 Indigenous and 20 rural participants and utilized a grounded theory approach to identify factors associated with their COVID-19 vaccine decision making. Wariness regarding safety of vaccines, resignation over the quality of available health care, and a historical mistrust of government-led interventions influenced vaccine rejection for indigenous participants. Rural participants remained divided on the perceived threat and consequences of COVID-19 and the efficacy and safety of the vaccines. The influence of friends and family members impacted vaccine hesitancy, as did discussions with healthcare providers when discussions were perceived to be respectful, sensitive, and non-judgmental., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

The promotion of health literacy was a key public health strategy during the COVID-19 pandemic. However, the role of social networks and relationships for support with health literacy-related tasks in the context of the COVID-19 pandemic is scarcely understood. Moving beyond traditional notions of health literacy, which focus on individual skills and knowledge, this study uses the concept of distributed health literacy to explore how individuals make meaning of and respond to health literacy and make their literacy skills available to others through their relational and socially situated and lived experiences of the COVID-19 pandemic. Drawing on 89 semi-structured interviews conducted in three European countries (Italy, Portugal, and Switzerland) between October and December 2021, we found narratives of stabilization, hybridization, and disruption that show how health literacy concerning COVID-19 is a complex social construct intertwined with emotional, cognitive, and behavioral responses distributed among individuals, communities, and institutions within socioeconomic and political contexts that affect their existence. This paper opens new empirical directions to understand the critical engagement of individuals and communities toward health information aimed at making sense of a complex and prolonged situation of uncertainty in a pandemic., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

In Belgium, adults with psychiatric disorders can opt for euthanasia under strict conditions. The impact of these euthanasia trajectories on close relatives remains insufficiently studied. This research is the first in Belgium to explore the concrete experiences and support needs of relatives involved in psychiatric-based euthanasia trajectories by means of an in-depth interview study. The interviews with 18 relatives were conducted from March to May 2023 and analyzed using inductive thematic coding. The results reveal the complex and ambivalent emotional and cognitive experiences among relatives. Experiences with euthanasia trajectories varied from positive to negative, marked by shared feelings of surrealism and unreality. This included the farewell process that relatives go through, regardless of whether euthanasia was carried out. While the desired level of involvement varied, everyone sought some degree of recognition and understanding for their complex position during the euthanasia procedure, aiding in a better comprehension and contextualization of the request. The level of actual involvement and support depended on the stage of the euthanasia request, their social network, and the reasons behind the request. There was a demand for transparent communication, more emotional and practical support, and assistance in coping with the emotionally charged process. Specific attention is needed for the emotional and cognitive rollercoaster, even if euthanasia is not ultimately pursued. Future research should employ a longitudinal design to gain deeper insights into relatives' fluctuating experiences and support needs throughout euthanasia trajectories. Seeking greater context diversity and combining perspectives in cluster research can improve understanding of interconnected needs., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Preferences of patients with advanced cancer are well studied in Western countries but less so in Asian communities where end-of-life discussions can be seen as taboo. This may lead to patients receiving care that is incongruent with their wishes as their disease progress. It is important for healthcare providers to have a better understanding of patients' experiences and preferences especially in a multicultural country like Malaysia with its diverse beliefs and values to facilitate better planning for future medical care., Objectives: To explore the experiences and preferences of Malaysian patients with advanced cancer., Design: Qualitative study of semi-structured interviews with thematic analysis., Setting/subjects: Purposive sampling of 19 patients with Stage 4 cancer recruited from inpatient and outpatient settings in National Cancer Institute Malaysia., Results: Three major themes emerged in the exploration of patients' experiences and care preferences in facing advanced cancer namely: 1) Dealing with poor prognosis 2) Spirituality as a source of strength and 3) Enablers of advance care planning., Conclusion: This study highlighted the preference for healthcare providers to be culturally sensitive during end-of-life care discussion and the need for improved spiritual care for Malaysian patients with advanced cancer. Further studies exploring the role of spiritual and cultural factors in advance care planning among Malaysians would be helpful in guiding these efforts., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Phenylketonuria (PKU) is a rare metabolic condition characterised by an inability to metabolise phenylalanine (Phe), found in many foods. When pregnant with PKU, women must adhere to a strict low-Phe diet. If they do not, foetal abnormalities or pregnancy loss can occur. Pregnancies are therefore closely clinically monitored and dominated by dietary management, leaving little "space" for women's emotional experience. This article explores the emotional impact of PKU during pregnancy and how this effects pre-natal bonding. Based on interviews with six women with PKU, conducted whilst they were pregnant, this article explores their unusual and previously undocumented experience. Image-making during interviews allowed women to uncover aspects of their experience that might otherwise have remained hidden. Interpretative phenomenological analysis of the transcripts and images generated five themes summarising the women's experiences. Some themes reiterated findings from previous studies, for example, the huge cognitive burden associated with PKU pregnancies and the importance of both expert and informal support to successful pregnancy management. However, new understanding also emerged, including rich description of the emotional load of these pregnancies and strategies that women use to manage this. Anxiety about baby safety was central to their experiences, and the effect of this on pre-natal bonding was explored. This article calls for increased formal and informal support for women with the emotional aspects of their PKU pregnancies, for example, the creation of "attachment-aware" services that support women with their anxiety, promoting strong pre-natal attachment and subsequently protecting maternal and infant mental health throughout pregnancy and beyond., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Charlotte Harris has had a past honorarium from Nutricia. Anne Marie Walker has had past honorariums from BioMarin, Cambrooke Therapeutics, and Vitaflo.

Objective: The goal of this study was to partner with community organizations to understand the research experiences of communities who speak languages other than English (LOE)., Methods: We conducted semi-structured qualitative interviews in Spanish, Nepali, Mandarin, French, or Kizigua with LOE community members and community leaders who completed recruitment and data collection. Audio-recordings of the interviews were transcribed and translated. We conducted qualitative coding using a mixed deductive-inductive analysis approach and thematic analyses using three rounds of affinity clustering. This study occurred in partnership with an established community-academic collaboration., Results: Thirty community members and six community leaders were interviewed. 83% of LOE participants were born outside of the US and most participants (63%) had never participated in a prior research study. Six themes emerged from this work. Many participants did not understand the concept of research, but those that did thought that inclusion of LOE communities is critical for equity. Even when research was understood as a concept, it was often inaccessible to LOE individuals, particularly because of the lack of language services. When LOE participants engaged in research, they did not always understand their participation. Participants thought that improving research trust was essential and recommended partnering with community organizations and disseminating research results to the community., Conclusion: This study's results can serve as an important foundation for researchers seeking to include LOE communities in future research to be more inclusive and scientifically rigorous., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Long-acting injectable pre-exposure prophylaxis for HIV prevention (LAI-PrEP) was approved for use in the United States in 2021, yet little is known about perceptions of LAI-PrEP among transgender and nonbinary young adults, a group that faces substantial barriers to HIV prevention. We investigated US transgender and nonbinary young adults' perceptions of and attitudes toward LAI-PrEP and how perceived advantages and disadvantages of LAI-PrEP related to the PrEP continuum of care. We conducted semi-structured interviews with 31 transgender and nonbinary young adults who reported oral PrEP use or were PrEP-eligible. We analyzed responses using both a deductive RADaR approach, to identify LAI-PrEP perceptions relevant to the PrEP continuum of care, and an inductive thematic analysis to explore key themes. In this study, all PrEP-experienced and most PrEP-naïve participants indicated an interest in LAI-PrEP, citing advantages over daily oral medication (e.g., fewer adherence challenges). Three key themes emerged: (1) Some participants linked perceived advantages of LAI-PrEP to experiences with gender-affirming care (e.g., familiarity with needles via hormone use). (2) Participants weighed trade-offs and contextual factors that influenced their LAI-PrEP preferences (e.g., interest contingent on whether location for receiving injection was geographically accessible). (3) Participants envisaged alternative delivery methods that could enhance LAI-PrEP acceptability and uptake (e.g., home injection). HIV prevention programs should incorporate the insights of transgender and nonbinary young adults to ensure that emerging HIV prevention technologies are accessible and responsive to the needs and concerns of people of all gender modalities., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Service-based caring sectors like disability are increasingly being operated via market logic, including shifts towards personalised funding. These shifts must be brought to life in/through people already located in relation to ideas and values that underpin historical policies. Our manuscript examines how identities are re/shaped in relation to marketised policy change and explores how identity change unfolds (or not) during periods of transition: situated within the transition to the National Disability Insurance Scheme executed in Australia as a major disability funding reform. Our qualitative dataset involves interview and focus group data collected with service recipients/carers ( n  = 28), providers/managers ( n  = 17) and advocates ( n  = 2) during shift from government- to personally-controlled funding of allied health services for people with disability in Australia (2017-2020). We used layered sociological inference to develop and interrogate processes of tension and identity change amidst lived experience(s) of policy change. Our analysis elucidates how various identities were encouraged, desired, resisted and constrained in relation to the policy transition. We bring together sub-themes from analysis of recipient/carer data (getting value-for-money; critiquing service quality; and experiencing system shortfalls) and manager/provider data (learning to transact; the call to care; and structural frictions in/and identity transitions) to interpret that recipients/carers are Feeling (like) the dollar sign and that managers/providers are Troubling profits. In both cases 'hearts' and 'minds' are perceived to be diametrically opposed and symbolic in/against processes of marketisation. We synthesise our data into an illustrative framework that facilitates understanding of how this perception of opposed 'hearts' and 'minds' seems to constrain the identity transitions encouraged by personalised funding, and explore ways in which desired identities might be supported amidst marketising policy transition., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Electronic medical records (EMRs) have the potential to improve and streamline the quality and safety of patient care. Harnessing the full benefits of EMR implementation depends on the utilisation of advanced features, defined as "mature usage." At present, little is known about the maturity of EMR usage by allied health professionals (AHPs)., Objective: To examine current maturity of EMR use by AHPs and explore perceived barriers to mature EMR utilisation and optimisation., Method: AHPs were recruited from three health services. Participants completed a 27-question electronic questionnaire based on the EMR Adoption Framework, which measures clinician EMR utilisation (0 =  paper chart , 5 =  theoretical maximum ) across 10 EMR feature categories. Interviews were conducted with both clinicians and managers to explore the nature of current EMR utilisation and perceived facilitators and barriers to mature usage., Results: Questionnaire responses were obtained from 193 participants AHPs. The majority of questions (74%) showed a mean score of <3, indicating a lack of mature EMR use. Pockets of mature usage were identified in the categories of health information, referrals and administration processes. Interviews with 21 clinicians and managers revealed barriers to optimisation across three themes: (1) limited understanding of EMR opportunities; (2) complexity of the EMR change process and (3) end-user and environmental factors., Conclusion: Mature usage across EMR feature categories of the EMR Adoption Framework was low. However, questionnaire and qualitative interview data suggested pockets of mature utilisation., Implications: Achieving mature allied health EMR use will require strategies implemented at the clinician, EMR support, and service levels., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Sexual violence/abuse (SV/A) is increasingly recognized requiring improved, evidence-based treatments. Delivery of group-based support in survivor services is common but often lacks evaluation. This qualitative study explored how survivors experienced groups and wanted recovery measured. Semistructured interviews with survivors of SV/A from two groups ( N  = 13, female: 25-64 years: mainly White British, heterosexual) were analyzed using an inductive approach to thematic analysis. Three overarching themes were identified including "anger," recovery "in the company of" others and "different destinations." The work contributes recognition of the need for evaluation with meaning to survivors and the potential for anger to be used in group activism., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: This qualitative study explored the beliefs and values influencing healthcare providers' delivery of gender-affirming care (GAC) to transgender and gender-diverse (TGD) youth amidst current social and political dynamics., Methods: The study PI conducted 43 semi-structured interviews with providers across states with varying GAC legislation. Responses from 41 providers were analyzed in this paper. A thematic approach to data analysis was employed using qualitative coding., Results: Key themes emerged: criteria for treatment, ethical and moral considerations, and professional and personal responsibility. Providers widely endorsed GAC as evidence-based and essential for alleviating distress and promoting autonomy. They emphasized the importance of respecting patients' gender identities and viewing GAC as life-saving., Conclusion: Despite legislative challenges, the study highlights a strong consensus among providers on the medical necessity of GAC for TGD youth., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: The shortage of prescription stimulants is an ongoing issue that is impacting the ability of individuals with ADHD to access their medication. Amidst concerns that this shortage may have a substantial impact on individuals' ability to manage their symptoms effectively, this research seeks to understand the experiences and consequences for those affected., Methods: In this study, we interviewed individuals with ADHD who have been directly impacted by the stimulant shortage. Thematic analysis focused on identifying common themes related to challenges with medication access and the resulting effects on daily living., Results: The study uncovered significant difficulties in accessing ADHD medication due to current shortages, leading to disruptions in the management of ADHD symptoms and subsequent detriments to individuals' professional, educational, and personal lives. Systematic controls aimed at reducing non-medical use were found to exacerbate these access issues, inadvertently compounding the challenges faced by those using medication for legitimate medical needs. Individuals also described ways they coped with the shortage, with some seeking ADHD medication via unofficial channels., Conclusion: Our findings highlight the urgency of addressing stimulant shortages to safeguard the wellbeing of individuals with ADHD. This study also calls for a critical review of policy measures regulating stimulant medication access, and their effectiveness at reducing non-medical use given the unintended consequences these regulations appear to have on individuals prescribed these medications for therapeutic purposes., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

This paper explores temporalities and experiences of time drawn from an analysis of interview data from a critical narrative inquiry of the experiences of young adults living with home mechanical ventilation (HMV). The analysis centers the ideological effects of dominant discourses that shape understandings of time in the Euro-Western world and the ways in which young adults' stories prompt a rethinking of time in health research and praxis. Data generation involved interviews and photo-elicitation with five young adults (ages 18-40). A critical narrative analysis of participants' stories surfaced the influence of ableist, developmentalist, and neoliberal discourses of time and the creative resistance that points to the potential of crip orientations to time in opening up possibilities for living. Implications for practice and research are offered., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Women with upstream social determinants of health, particularly those with recent experiences of incarceration, homelessness, and/or substance use, encounter a series of barriers in accessing health care services and consequently face poor sexual and reproductive health outcomes. Driven by a community concern for increasing rates of syphilis and congenital syphilis among women who are structurally disadvantaged, this study focuses on their experiences with reproductive healthcare access across healthcare settings. Research Design and Study Sample: This community-based  pláticas  (conversational) research project gathered 12 in-depth interviews and  testimonios  (testimonies) with women who reported a criminalized upstream barrier (incarceration, homelessness, and/or substance use) in a small city in the southwestern U.S. - most of whom identified as Latina/Hispanic. Analysis and Results: Using a grounded analysis and drawing upon Chicana feminist methodologies, this study identifies four major themes: (1) homelessness and economic vulnerabilities, (2) incarceration and health care, (3) drug use, provider stigma, and motherhood, and (4) desired changes to the healthcare experience. Conclusion: Results highlight the need for economic and transportation supports, community-based preventive services as alternatives to incarcerated healthcare, along with more compassionate and structurally competent provider-patient dialogue., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Native Hawaiians and Pacific Islanders (NHPIs) in aggregate experience greater health burdens than non-Hispanic Whites, such as a higher incidence of cervical cancer and COVID-19. Given the importance of vaccinations in preventing and reducing the severity of diseases, such as the flu, cervical cancer, and COVID-19, the receipt of vaccines during childhood and adolescence is crucial. Therefore, this qualitative study aimed to explore the factors associated with NHPI parents' decisions regarding vaccinating their children with these elective vaccinations-that is, vaccinations not required for child care, preschool, or K-12 admissions in California but highly recommended. A total of 15 NHPI parents were recruited through a community-based organization. Semi-structured interviews explored parents' reasons for accepting or denying each vaccine for their child(ren). Results demonstrated variable acceptance of each vaccine, though consistent themes included protection and concerns over side effects. This study also found two general types of parents-those who treat vaccines the same and those with varying opinions about each vaccine. Results from this study demonstrate the family- and community-oriented nature of NHPI communities, suggesting that future interventions target not only parents but also their families and communities to cultivate vaccine acceptance through social networks. Furthermore, addressing all three vaccines during well-child visits may benefit parents who view each vaccine as separate entities with individual pros and cons. Such interventions could contribute toward reducing the burdens of particularly chronic health disparities.

There is growing awareness about issues of sexual consent, especially in autonomy-compromising or "non-ideal" contexts, including sex involving alcohol. Understanding the conditions needed for consensual sex to occur in this emergent milieu is critically important, especially for young men (ages 18-30 years) who normatively combine drinking alcohol with sex and are most often perpetrators of sexual violence. This study offers a discourse analysis of young men's alcohol use and sexual consent. Data are drawn from qualitative interviews with 76 young men (including gay, bisexual, queer, and straight men) in Vancouver, Canada, from 2018 to 2021. Informed by Kukla's non-ideal theory of sexual consent and critical and inclusive masculinities, this analysis identified three discursive frames: careful connections, watering it down , and blurred lines . In careful connections young men discussed their efforts to actively promote sexual and decisional autonomy for themselves and their sexual partners when drinking. Yet, in watering it down young men invoked discourses of disinhibition, deflection, and denial to normalize alcohol use as being somewhat excusatory for sexual violence, downplaying the role and responsibility of men. Lastly, men operationalized blurred lines through a continuum of consent and of "meeting (masculine) expectations" when discussing sexual violence and victimization while intoxicated. Together, these discursive frames provide insights into the gendered nature of sexual violence and the extent to which idealized notions of sexual consent play out in the everyday lives of young men who use alcohol with sex. Findings hold philosophical and pragmatic implications for contemporary efforts to scaffold sexual consent., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Healthcare workers (HCWs) experience occupational stressors that negatively impact emotional well-being and exacerbate turnover intentions. In the wake of the COVID-19 pandemic, the resultant acute care turnover rates have reached an all-time high. In addition, occupational stressors lead to psychological stress, including moral distress, defined as the dissonance between perceiving what the right course of action is and encountering an obstacle to acting accordingly. This qualitative descriptive study explored the perceptions of patient-facing HCWs in acute care hospital settings regarding the workplace stressors they encountered and the role of hospital-based chaplains in addressing emotional well-being and stress with 33 interviews. Findings suggest that HCW frequently experience work-related moral distress and seek relief by interacting with hospital chaplains. Chaplain care, common in American healthcare facilities for the spiritual care of patients, is an easily accessible resource to HCWs. Facilitating chaplain-HCW interactions may be an effective strategy for responding to moral distress and improving healthcare workers' well-being., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: Child sex trafficking (CST) is the involvement of minors in the commercial exchange of sex for goods, services, drugs, or money. The COVID-19 pandemic negatively affected many risk factors associated with CST victimization and the availability of CST services. We examined service providers' perspectives on how the pandemic affected trajectories of CST victimization among young people in the United States., Methods: We collected qualitative data from 80 law enforcement professionals and service providers working with young people affected by CST from 11 US cities. Semistructured interviews lasted approximately 1 hour and were digitally recorded, transcribed verbatim, and coded via a grounded theory approach., Results: We found 3 overarching themes related to the pandemic's effect on CST victimization trajectories: grooming, perpetration, and service provision. Participants described how increased online activity may have increased the risk of CST, even among children without traditional risk factors. However, technology also facilitated young people's agency in seeking help and receiving services. In addition, participants reported increases in virtual service provision that facilitated access to, and availability of, CST services more generally., Conclusions: Technology use among young people increased during the pandemic, leading to increases in the risks of experiencing technology-facilitated CST. Technology use among young people who experience CST victimization-and how it may differ from young people more generally-is underexplored and may provide insights into prevention and treatment. Collectively, results highlight the need for epidemiologic research to help identify how global and national events affect trajectories of victimization among young people., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Older adults with bipolar disorder experience distinct challenges compared to younger age groups with bipolar disorder. They potentially require adaptations to the care they receive. This study aimed to explore experiences of care and changing care needs in older adults with bipolar disorder. People with bipolar disorder (aged ≥60) were recruited through three NHS Trusts in the North West of England, charity organisations, a confidential university participant database, and social media. Participants completed single time-point biographical narrative interviews, which were analysed using narrative analysis. Sixteen participants' accounts led to the creation of four themes: (1) 'Navigating the disruption caused by diagnosis'; (2) 'The removal of services that provided hope'; (3) 'Later life: We are on our own now'; and (4) 'Changing care needs in later life: We still need support'. The care needs of older adults with bipolar disorder appear to change over time, and services often fail to offer adequate, tailored care for this group at present. Current support requires adaptation to be effective and appropriate and to enable this group to age well in later life., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Research about online sexual violence (OSV) is needed to be able to better meet the needs of girls in psychiatric care. The objectives of this study are to explore experiences of online sexual violence among young female psychiatric service users. Interviews with nine girls with psychiatric care needs were analyzed with thematic analysis. The findings are summarized in four themes which contribute to the notion that online sexual violence is only one, albeit important, part of a more complex picture of violence among young girls in psychiatric care. The girls' narratives are shaped by, as well as reproducing gender norms., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: The Veterans Health Administration (VA) recommends lung cancer screening (LCS), including shared decision making between clinicians and veteran patients. We sought to characterize 1) veteran conceptualization of lung cancer risk and 2) veteran and clinician accounts of shared decision-making discussions about LCS to assess whether they reflect veteran concerns., Methods: We conducted qualitative interviews at 6 VA sites, with 48 clinicians and 34 veterans offered LCS in the previous 6 mo. We thematically analyzed transcripts, focusing on lung cancer risk perceptions, LCS decision making, and patient-clinician conversations., Results: Three themes emerged. 1) Veterans' lung cancer risk conceptualizations incorporated smoking, occupational hazards, and family history, whereas clinicians focused on smoking as the primary risk factor. 2) Veterans' risk perceptions were influenced by symptoms, recency of exposures, and anecdotes about smoking, cancer, and lung disease, leading some veterans to believe other risk factors outweighed smoking in increasing lung cancer risk. 3) Both veterans and clinicians described LCS conversations centered on smoking, with little mention of other risks., Limitations: Our findings may not reflect non-VA settings; for example, veterans may be more concerned about airborne hazards., Conclusions: While airborne hazards strongly influenced veterans' lung cancer risk conceptualizations, clinicians seldom addressed this risk factor during LCS shared decision making, instead focusing on smoking., Implications: In 2022, the US Congress highlighted the link between military toxic exposures and lung cancer risk, requiring VA clinicians to discuss these exposures and conferring automatic VA benefits to exposed veterans with cancer. There is a time-sensitive need for tools to support VA clinicians in discussing military hazards as a lung cancer risk factor, which may result in more engaging, less stigmatizing LCS shared decision-making conversations., Highlights: Veterans' conceptualizations of their lung cancer risk were multifactorial and sometimes ranked exposure to occupational airborne hazards and family history above smoking in increasing lung cancer risk.However, patient-clinician lung cancer screening (LCS) conversations were typically brief and focused on smoking, which could stigmatize patients and failed to engage veterans in discussing what mattered most to them in thinking about their lung cancer risk.These findings are of heightened importance in light of the 2022 Sergeant First Class Heath Robinson Honoring our Promise to Address Comprehensive Toxics (PACT) Act, which requires VA clinicians to discuss toxic military exposures and their relationship to lung cancer and other health conditions.Tools that help clinicians assess and incorporate multiple risk factors into discussions about lung cancer may better address patients' concerns and beliefs and lead to more engaging, less stigmatizing shared decision-making conversations about LCS., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Financial support for this study was provided entirely by a grant from the Health Services Research and Development, US Department of Veterans Affairs (VA HSR&D IIR 18-075, PI: Wiener). The funding agreement ensured the authors’ independence in designing the study, interpreting the data, writing, and publishing the report. The following authors are employed by the sponsor: Jacqueline H. Boudreau, Rendelle E. Bolton, Samantha Sliwinski, Tanner J. Caverly, and Renda Soylemez Wiener.

Minimal research has explored the personal experience of burnout in doctors from any medical speciality. Consequently, we aimed to provide a relatable description and understanding of this globally recognised problem. We employed an interpretative phenomenological analysis (IPA) of face-to-face interviews with seven general practitioners (GPs) in Northern Ireland, having selected interviewees best able to speak about burnout. We sought to understand how these GPs understood their burnout experiences. Our participants' continuous work involved more than their busy weekdays and also working on supposedly off evenings and weekends. In addition, draining intrusive thoughts of work filled most, if not all, of their other waking moments. There was no respite. Work was 'always there.' Being constantly busy, they had no time to think or attend to patients as doctors. Instead, participants were going through the motions like GP automatons. Their effectiveness, efficiency, and caring were failing, while their interactions with patients had changed as they tried to conserve their now-drained energy and empathy. There was no time left for their families or themselves. They now "existed" to continuously work rather than "living" their previous, more balanced lives that at one time included enjoying being a doctor. Worryingly, participants were struggling, isolated, and vulnerable, yet unwilling to speak to someone they trusted. We intend our burnout narrative to promote discussion between medical colleagues and assist in its recognition by GPs and other doctors. Our findings warn against working excessively, prioritising work ahead of family and oneself, and self-isolation rather than seeking necessary support., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Healthcare professionals play a crucial role in addressing the concerns of vaccine-hesitant parents since they form a trusted source for vaccine-related information. An increasing body of evidence suggests that healthcare professionals are faced with complexities when navigating the sensitive topic of parental vaccine hesitancy, as they balance their own vaccine- and context-specific concerns with institutional and societal pressures to vaccinate. Furthermore, health choices, such as parental choices for childhood vaccination, are often linked to moralisation. Given the emphasis on effective communication with vaccine-hesitant parents in the patient-centred care literature, it is important to consider healthcare professionals' interpretations of parental vaccine hesitancy. Hence, a deeper understanding of how healthcare professionals make sense of, and moralise, childhood vaccination can help us understand how moralisation might appear in their communication with hesitant parents (in)directly. Drawing on a critical social-psychological framework for discourse analysis, this study analyses 39 semi-structured interviews with healthcare professionals in Flanders, Belgium, and presents the discursive patterns articulated by healthcare professionals on parental vaccine hesitancy. The findings elucidate how healthcare professionals perpetuate, or resist, moral discourse in their accounts of vaccine hesitancy by constructing five different interpretative repertoires, that is, a "good" or "bad" parenting repertoire, a freedom of choice repertoire, an individual risk-benefit repertoire, a public health repertoire, and an accessibility repertoire. Our study highlights the complexities healthcare professionals experience in negotiating vaccine hesitancy, as their understandings of vaccine hesitancy are affected by, and contribute to, existing moral dilemmas and dominant discourses surrounding health and parenting., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: We investigated how individuals with chronic obstructive pulmonary disease (COPD) and multi-morbidity (MM) navigate barriers and facilitators to their health management., Methods: We conducted a mixed-methods study using semi-structured interviews and survey assessments of adults with COPD, hypertension, and/or diabetes. We recruited 18 participants with an average age of 65, with 39% being male, 50% Black, and 22% Hispanic/Latino/a. Five investigators used an iterative, hybrid-coding process combining a priori and emergent codes to analyze transcripts and compare quantitative and qualitative data for themes., Results: Participants reported a generalized approach to their health rather than managing MMs separately. Individuals with good or mixed adherence found daily routines facilitated regular medication use, while those with poor adherence experienced complex prescriptions and life stressors as barriers. Walking was viewed as beneficial but challenging due to limited mobility. Most participants viewed diet as important to their MMs, but only two reported high diet quality and many held inaccurate beliefs about healthy diet choices., Discussion: Participants with MM were highly motivated to engage in self-management activities, but some individuals experienced barriers to maintaining them. Emphasizing an individualized clinical approach to assessing and solving patient barriers may improve self-management outcomes in this complex population., Competing Interests: Declaration of Conflicting InterestsNo conflicts of interest exist for the following authors: KAM, ROC, AMR, GW, JWG, and ADF. Author JPW has received consulting honoraria from Sanofi, Atea, PPD, Prospero, and Banook and a research grant from Sanofi, Regeneron, and Arnold Consultant. Author MSW has received research grants from the Gordon and Betty Moore Foundation and Eli Lilly and personal fees from Pfizer, Sanofi, Luto UK, University of Westminster, and Lundbeck.

Background : Compassion is a relational response to patients' suffering. Palliative care focuses not only on skills but also on compassion. Nevertheless, incorporated patient perspectives are largely missing from existing research. Aim : Our mixed-method exploratory study in a major Swiss cancer center sought to better understand compassionate presence, its benefits and challenges for patients and providers (ie, close relatives, close friends, and professionals-all referred to here as providers). It also investigated providers' motivation. Method : Twelve multidisciplinary, specially trained professionals interviewed 50 patients who had received compassionate presence. All patients had advanced cancer with risk of death. Providers were also interviewed. Data on the positive and burdensome effects of compassionate presence on patients and providers were gathered using a specific protocol. This also served to record patients' characteristics and providers' motivations to give compassion and whether providers felt sustained (eg, by nature). Results : The study suggests a high impact of compassionate presence with benefits on patients (50/50) and on providers (49/50). Enhanced connectedness was evident not only in the patient-provider relationship (38/50) but also, for instance, in an increased ability to love (8/50) or in an intensified solidarity (29/50). A considerable number of patients and providers experienced mental-spiritual change but also burdensome effects (eg, ambivalences). Providers showed a range of motivations. Conclusion : Compassion is not only necessary in existential crises and near death, but also happens and takes considerable effects precisely in such situations., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: The need to increase exercise and decrease sedentary behaviour in people diagnosed with psychosis is well-recognised., Aims: We set out to explore caregivers' perspectives on what supports and prevents physical activity, and how to use carers' support most effectively., Method: Fourteen caregivers of people diagnosed with psychosis were interviewed. Data were analysed using reflexive thematic analysis, in collaboration with caregivers., Results: Four themes were developed, the first flagging the importance of physical activity, then the others calling for action: (a) Physical inactivity matters: carers are keen to support efforts to increase physical activity in their family or friends because of the enormous impact physical inactivity has on patients, and consequently on carers themselves, such as social isolation and reduction in their own activity. (b) Tell us: without being well-informed about how to help, carers can feel like they are powerless to stop a 'slow suicide' or 'decline' in patients. (c) Listen to us: through knowing their family and friends well, carers are able to identify important changes in patients and identify successful motivators for them, but these insights can feel uninvited. (d) Ask us: being invited to support activity as a partner in a patients' care is desirable but having offers of help rejected can "demotivate the motivator.", Conclusions: Caregivers described strong motivation to help patients to be more physically active but can feel that their support is overlooked and under-used by services. Clinical recommendations for carer involvement in physical activity interventions are offered., Competing Interests: Conflict of interestThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: DS is an expert advisor to the NICE centre for guidelines. DF is an NIHR Senior Investigator. Other authors declare no conflicts of interest. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, NICE or the Department of Health.

Background: Women are disproportionately impacted by depression and anxiety disorders and in particular, women from minoritised ethnic communities experience inequalities in access to outcomes of psychological treatment for these disorders. Better understanding from the views of service users about the factors that impact their access to, and experiences of care could help to optimise treatment for these groups., Method: This study explored experiences of treatment and gathered suggestions about treatment improvement, from the perspectives of women currently using psychological therapy services. Semi-structured interviews were conducted with 12 female NHS Talking Therapies for anxiety and depression (NHSTTad) service users from minoritised ethnic communities. Data were analysed using thematic analysis., Results: Four high-order themes were identified: (1) cultural identity and experiences of mental health and treatment, (2) challenges associated with treatment, (3) facilitators of good treatment experiences and outcomes and (4) improvements for women from minoritised ethnic communities., Conclusions: Findings showed that cultural sensitivity and awareness are important to minoritised ethnic women receiving therapy. Challenges included access difficulties and limitations of treatment options offered, alongside personal challenges of engaging in therapy. Facilitators of good treatment experiences and outcomes included flexibility on the part of the service, as well as therapist-related factors such as identity characteristics (age, gender and culture of therapist), a good therapeutic relationship and the therapist's ability to deliver person-centred care. Improvements included ensuring care is culturally sensitive, reducing waiting times or providing better support for people on waiting lists, providing a flexible service that takes individual needs into account, increasing workforce diversity and reaching out to underserved communities. Many of the suggested improvements are generalisable to underserved minoritised ethnic groups, regardless of gender and could be applied to other psychological therapies services other than NHSTTad.

Young adults thrust into the role of caregiving for parents with young-onset dementia (YOD) face unique challenges during their formative years. While existing research acknowledges the crucial role of young adult caregivers, a gap persists in understanding how this group experiences and redefines their identity amidst these circumstances, along with the psychological and societal challenges encountered. This knowledge deficit hinders the identification of suitable social support, adversely affecting the personal growth and well-being of these young adult caregivers. In this single-case study, we used a combination of a semi-structured interview and photovoice to explore the journey of a 19-year-old caregiver, Alice, whose mother had been diagnosed with dementia in the preceding 3 years. Through this unique perspective, we aimed to illuminate how caregiving for a mother with YOD may profoundly redefine familial roles and relationships. Over 3 months, Alice captured significant life moments through photography, selecting meaningful images for bi-weekly meetings. These images served as pivotal themes, triggering in-depth conversations during subsequent interviews to provide nuanced insights into her life experiences. Findings reveal four major themes faced by a young caregiver: (1) challenges adapting to an unexpected role, (2) navigating the complex emotional terrain of losing a loved one to YOD, (3) prioritizing the well-being of the healthy parent, and (4) expressing a profound desire for both informal and formal support. These results underscore the intricate identity and emotional challenges faced by young adult caregivers, emphasizing the urgency of addressing their unique needs through family-centered systemic support services., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Advance care planning initiatives are becoming more widespread, increasing expectations for providers to engage in goals of care conversations. However, less is known about how providers communicate advance care planning within and throughout a health care system., Aim: To explore perspectives of communication processes in the rollout of an advance care planning initiative., Design: Theoretically informed secondary analysis of 31 semi-structured interviews., Setting/participants: Key partners in a Veterans Health Administration goals of care initiative., Results: Using the constant comparative approach followed by qualitative mapping of themes to the layers of the Socio-Ecological Model, four themes and corresponding Socio-Ecological layers were identified: Goals of Care Communication Training (Policy, Community, and Institutional) requires more resources across sites and better messaging to reduce provider misconceptions and promote an institutional culture invested in advance care planning; Interprofessional Communication (Interpersonal) suggests care team coordination is needed to facilitate continuity in goals of care messaging; Communication in Documentation (Institutional, Interpersonal, and Intrapersonal) highlights the need for capturing the context for goals of care preferences; and Patient/Family Communication (Interpersonal and Intrapersonal) encourages offering materials and informational resources early to facilitate rapport building and readiness to determine goals of care., Conclusions: Findings support the need for initiatives to incorporate an evaluation of how goals of care are discussed beyond the interpersonal exchange between patient and provider and signal opportunities for applying the Socio-Ecological Model to better understand goals of care communication processes, including opportunities to improve initiation and documentation of goals of care., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

When and how to survey potential respondents is often determined by budgetary and external constraints, but choice of survey modality may have enormous implications for data quality. Different survey modalities may be differentially susceptible to measurement error attributable to interviewer assignment, known as interviewer effects. In this paper, we leverage highly similar surveys, one conducted face-to-face (FTF) and the other via phone, to examine variation in interviewer effects across survey modality and question type. We find that while there are no cross-modality differences for simple questions, interviewer effects are markedly higher for sensitive questions asked over the phone. These findings are likely explained by the enhanced ability of in-person interviewers to foster rapport and engagement with respondents. We conclude with a thought experiment that illustrates the potential implications for power calculations, namely, that using FTF data to inform phone surveys may substantially underestimate the necessary sample size for sensitive questions., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Empathy is one of the important components in the patient-nurse relationship. The aim of the study was to explain the culture of empathic care in intensive care unit (ICU) nurses. The present focused ethnographic study was conducted in the cardiac surgery ICU in Tehran. Three methods of observation, interview, and review of existing documents were used to collect data. From data analysis, three cultural models, "Predominance of task-based care over emotion-based care," "Empathy and lack of empathy, two ends of the spectrum of the nurse-patient relationship," and "Empathy, an interactive and reciprocal process," were extracted. The results showed that empathy creates a caring environment where nurses not only understand their patients but also relate to them, and both are affected by it. Policymakers should consider removing barriers as a means of empowering nurses to provide empathic care., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objective: Parkinson's disease (PD) is one of the most common neurodegenerative diseases in the United States, affecting approximately 1 million Americans. However, there is a dearth of research on the employment experiences of individuals with PD. This research article makes a crucial contribution to the literature by examining the role of disability stigma in shaping employment options in PD, with relevance to the experiences of adults with chronic and/or progressive diseases more broadly., Methods: The author conducted individual semi-structured interviews with 23 adults under the age of 65 with PD. Interviews were audio-recorded and transcribed. The author utilized an integrated approach to analysis, primarily employing a thematic analysis approach. Additionally, a narrative analysis strategy, the Listening Guide, was integrated into the broader thematic analysis to deepen analysis of discrimination and stigma., Results: Findings demonstrate how internalized, anticipated and/or experienced disability-related stigma profoundly affects employment experiences, influencing participants' work outcome expectations and acting as an employment barrier., Discussion: Findings have implications for health care practice and education, disability policy, early intervention strategies after the onset of PD and priorities for future research., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Acquired brain injury (ABI) is one of the most common causes of disability and death globally. Support from informal caregivers is critical to the well-being and quality of life of people with ABI and supports the sustainability of global health and social care systems. This study presents an in-depth qualitative analysis of the experiences of eight British informal caregivers supporting someone with ABI. Semi-structured interviews were conducted with narratives transcribed verbatim and analysed using interpretative phenomenological analysis (IPA). Three superordinate themes were generated: making sense of brain injury; being consumed by caregiving; and, the changing self. These data highlight the impact of caregiving on the caregiver's illness perceptions and sense of self. By identifying negative and positive changes in the caregiver's sense of self, and dilemmas regarding the care recipient's behaviour, we address less understood aspects of caregiver experiences. Caregiving can pose both challenges to the caregiver's sense of identity and an opportunity for self-growth. Some caregivers exhibit resilience throughout their journey, with post-traumatic growth more apparent in the later stages of caregiving. Illness perceptions shape caregiver well-being and family dynamics and indicate the need to address stigmatisation and discrimination faced by ABI survivors and caregivers. Although some caregivers acquired positive meaning and enrichment from their caregiving, previously described challenges of ABI caregiving are supported. Overall, our findings support the need for timely psychological/mental health support for caregivers, caregiver education, and the provision of short breaks from caregiving.

Wales has been committed to receiving asylum seekers and resettling refugees in towns and cities, and these numbers are increasing on a yearly basis. However, many people seeking asylum feel disempowered by the disabling policies of the Home Office, leading to social and economic hardship for this population. This qualitative study aimed to capture the voices of this under-served group through in-depth, semi structured interviews to gain contextual understanding of the social and psychological challenges experienced by people seeking asylum in Wales. The findings suggest that many asylum seekers and refugees relied on their social support networks to compensate for the limited welfare offered to them by the asylum system. Changes to the asylum process and policies are needed for Wales to achieve its goal of ensuring that people seeking asylum are supported to rebuild their lives and make a full contribution to the Welsh society., Competing Interests: Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Multiple debilitating symptoms and the progressive nature of Parkinson's disease (PD) affect carepartners' quality of life. Although, there is abundant knowledge on caregiver burden there is limited knowledge on PD carepartners' perceptions of caregiving., Aim: To understand family members' perception of their role, and of the challenges and rewards of PD caregiving., Method: Using a qualitative descriptive research design, we conducted semi-structured interviews with current and former PD carepartners (n = 16) . Interviews were audio-recorded, de-identified, and transcribed verbatim. Data were coded and analyzed to identify themes., Results: We identified 5 themes: (a) Unpredictability is the hardest part of caregiving. It was hard to cope with the unpredictable daily and longer-term fluctuations in PD symptoms; (b) Disease progression and multiple symptoms contribute to carepartners' emotional distress . Carepartners felt unprepared and were saddened by the patient's and their own losses; (c) Caring for a family member is not a "burden." Though stressful, carepartners resisted associating caregiving with the term "burden"; (d) Caregiving is a partnership. Carepartners saw their role as being less of "givers" and more of partners in disease management ; and (e) Caregiving is an opportunity for personal satisfaction, joy, and growth. Caregiving was seen as a "gift" that enabled carepartners to express love and experience personal growth., Conclusions: Despite challenges PD carepartners view their role as "partners" in the management of the disease and find meaning and strength in caregiving. A palliative care approach emphasizing the positives and challenges of caregiving may provide carepartners with better support., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.