A qualitative reflexive thematic analysis of innovation and regulation in hearing health care.

BACKGROUND: The hearing health sector is an example of a health sector that is experiencing a period of rapid innovation driven by digital technologies. These innovations will impact the types of interventions and services available to support the communication of deaf and hard-of-hearing individuals. This study explored the perceptions of informed participants on the topic of innovation and regulation within hearing healthcare in Australia and the United Kingdom (UK). METHODS: Participants (N = 29, Australia [n = 16], UK [n = 13]) were purposively sampled and joined one of two online workshops. Participants included adults with hearing loss and family members, hearing health professionals, academics/researchers, representatives of hearing device manufacturers, regulators and policymakers. Workshop data were analysed using reflexive thematic analysis. RESULTS: Participants conceptualised the hearing health sector as a network of organisations and individuals with different roles, knowledge and interests, in a state of flux driven by innovation and regulation. Innovation and regulation were perceived as mechanisms to ensure quality and mitigate risk within a holistic approach to care. Innovations encompassed technological as well as non-technological innovations of potential benefit to consumers. Participants agreed it was essential for innovation and regulation to be congruent with societal values. Critical to ethical congruence was the involvement of consumers throughout both innovation and regulation stages, and the use of innovation and regulation to tackle stigma and reduce health disparities. Participants expressed the desire for accessible and inclusive innovation in the context of fair, transparent and trustworthy commercial practices. CONCLUSIONS: This study explored how stakeholders within the hearing health sector understand and make sense of innovation and the role of regulation. Overall, and despite reservations relating to health care professionals' changing roles and responsibilities, innovation and regulation were conceptualised as beneficial when situated in the context of holistic, whole-person, models of care. The results of this study will inform considerations to support the development and implementation of innovations and regulation within the hearing sector and across other health sectors influenced by technological advances.

A qualitative evaluation of patient and parent experiences with an undiagnosed diseases program.

Previous studies have explored patient experiences before being seen or at the beginning of their evaluation by undiagnosed diseases programs. This study provides additional insight into experiences after participation through in-depth, qualitative evaluation, allowing for reflection of current practice and patient/parent needs. Semi-structured interviews were conducted with patients and parents of patients seen at the University of Alabama at Birmingham (UAB)'s unique, clinically focused Undiagnosed Diseases Program (UDP). Analysis of the interviews was guided by a thematic approach. Participants had undergone a diagnostic odyssey before being evaluated by the UDP and remained hopeful for a diagnosis. They appreciated the opportunity to be seen by the UDP. However, perception of experiences differed based on whether evaluation by the UDP led to a diagnosis. Additionally, while participants were pleased with initial communication, they indicated that there were unmet needs regarding follow-up. Patients and parents of patients believe that participation in an undiagnosed diseases program is the best option for diagnosis. The findings of this study provide a general overview of patient experiences and highlight strengths of the UAB UDP while also emphasizing areas to focus the improvement to optimize the benefit to patients and families with undiagnosed and rare diseases, which could be used helpful in the development of similar clinics.

Psychological Safety and Hierarchy in Operating Room Debriefing: Reflexive Thematic Analysis.

INTRODUCTION: Debriefing is a team discussion in a constructive, supportive environment. Barriers exist to consistent, effective team debriefing in the clinical setting, especially in operating theaters. The purpose of this study was to gain insights from frontline workers on how to set up an effective debriefing policy for our operating room. METHODS: This was a qualitative study in which we interviewed operating room workers in a tertiary children's hospital. Interviews were audio-recorded, transcribed, and coded. Data were analysed using the reflexive thematic analysis technique within a critical realism paradigm. RESULTS: Interviews were analysed from 40 operating room staff: 14 nurses, seven anesthetic technicians, seven anaesthetists, and 12 surgeons; 25 (65%) were female. The three key themes were (1) "commitment to learning"-healthcare workers are committed to teamwork and quality improvement; (2) "it is a safe space"-psychological safety is a prerequisite for, and is enhanced by, debriefing; and (3) "natural leader"-the value of leadership, but also constructs around leadership that maintain hierarchies. CONCLUSIONS: Psychological safety is both a prerequisite for and a product of debriefing. Leadership, if viewed as a collective responsibility, could help break down power structures. Given the results of this study and evidence in the literature, it is likely that routine debriefing, if well done, will improve psychological safety, facilitate team learning, reduce errors, and improve patient safety.

Mining for Gold: A Mixed-Methods Study on Personal Statements in General Surgery Residency Applications.

INTRODUCTION: As numeric data are becoming increasingly scarce in general surgery residency applications, the personal statement (PS) may be key to identifying candidates to interview. This study sought to determine if PSs of candidates invited for interview at our residency program had different qualities when compared to those not invited. MATERIALS AND METHODS: This single-institution study retrospectively reviewed the PSs of applications for a categorical general surgery position (2022). The scores assigned to PSs were compared. The content of PSs was qualitatively analyzed based on an a priori coding scheme. The codes of interest related to program alignment were the following: diversity, equity, and inclusion efforts, social determinants of health, and service to underserved communities. RESULTS: Of 308 applications, 112 (36%) applicants were invited to the interview. For applicants who were invited to the interview, the PSs were scored higher compared to those who were not invited (median 4.25 versus 3.5, P < 0.001). Highly scored PSs were more likely to include a personal story (74% versus 59%, P = 0.01) and mention diversity, equity, and inclusion efforts, social determinants of health, or service to under-served communities (62% versus 37%, P < 0.001). Also, a greater proportion of applicants who were invited to the interview wrote about these topics (71% versus 33%, P < 0.0001). CONCLUSIONS: At our institution, PS quality and content is associated with interview selection. A high-quality PS tended to include personal story about the applicants and signal value alignment with our institution. PSs should be placed at greater importance in the review process and emphasized as a marker for candidate and institutional alignment.

Building a healthy generation together: parents' experiences and perceived meanings of a family-based program delivered in ethnically diverse neighborhoods in Sweden.

INTRODUCTION AND AIM: Ethnically diverse neighborhoods encounter pronounced inequalities, including housing segregation and limited access to safe outdoor spaces. Residents of these neighborhoods face challenges related to physical inactivity, including sedentary lifestyles and obesity in adults and children. One approach to tackling health inequalities is through family-based programs tailored specifically to these neighborhoods. This study aimed to investigate parents' experiences and perceptions of the family-based Open Activities, a cost-free and drop-in program offered in ethnically diverse and low socioeconomic neighborhoods in Sweden. METHODS: Researchers' engagement in 15 sessions of the Open Activities family-based program during the spring of 2022, and individual interviews with 12 participants were held. Data were analyzed using reflexive thematic analysis. RESULTS: The analysis resulted in three main themes and seven sub-themes representing different aspects of the program's meaning to the participants as parents, their families, and communities. The main themes describe how parents feel valued by the program, which actively welcomes and accommodates families, regardless of cultural differences within these neighborhoods. The themes also show how cultural norms perceived as barriers to participation in physical activity can be overcome, especially by mothers who express a desire to break these norms and support girls' physical activity. Additionally, the themes highlight the importance of parents fostering safety in the area and creating a positive social network for their children to help them resist criminal gang-related influences. CONCLUSIONS: The program's activities allowed parents to connect with their children and other families in their community, and (re)discover physical activity by promoting a sense of community and safety. Implications for practice include developing culturally sensitive activities that are accessible to and take place in public spaces for ethnically diverse groups, including health coordinators that can facilitate communication between groups. To enhance the impact of this program, it is recommended that the public sector support the creation of cost-free and drop-in activities for families who are difficult to reach in order to increase their participation in physical activity, outreach, and safety initiatives.

Body map stories from Colombia: experiences of people affected by leprosy and the influence of peers during diagnosis and treatment.

INTRODUCTION: Almost one third of people affected by leprosy in Colombia suffer from disability, which often results from delayed diagnosis and treatment. We aimed to explore the experience of people affected by leprosy during the process of diagnosis and treatment and if and how this experience was influenced by peers. METHODS: A qualitative study using body map stories was conducted from October 2019 to February 2020 in Colombia. Adult people affected by leprosy were recruited through patient associations in different cities. We conducted three sessions with an average duration of 2-3 h per participant, during which the participants created a painted map of their body and chose symbols to represent their experience, while being engaged in an informal interview. The sessions were audio recorded, transcribed verbatim and analyzed thematically by an interdisciplinary team, consisting of physicians, social workers and a person affected by leprosy. RESULTS: The 17 study participants (11 female) were aged 20 to 70 years. Leprosy-related manifestations ranged from no to advanced disability. Some participants were active members of associations for people affected by leprosy. Three main themes were identified during analysis: (1) A long pathway to diagnosis, (2) Therapy as a double-edged sword and (3) The influence of other people affected by leprosy. The participants described an often years-long process until being diagnosed, which was marked by insecurities, repeated misdiagnosis, and worsening mental and physical health. Delayed diagnosis was related to late health care seeking, but also to inadequate health communication, lack of leprosy-related knowledge and negligence among health care workers. A high desire to cure motivated the participants to take their medication rigorously, despite the high treatment burden. Support from peers, either within the own social environment or provided from associations, contributed to a faster diagnosis and increased therapy adherence. Peers helped to recognize the symptoms, urged patients to seek care, recommended physicians with leprosy-related knowledge and provided a realistic example of both disease severity and curability. CONCLUSION: People affected by leprosy experience a significant burden during the process of diagnosis and treatment. Involving well-trained peers could foster early diagnosis, treatment compliance and prevention of disability.

"It gave me a sense of achievement and a sense of purpose"-a qualitative study of patient experiences of a virtually supervised exercise program for adults with advanced cancer and cachexia.

People with advanced cancer and cachexia experience significant body weight loss, adversely impacting physical function and quality of life (QOL). Effective, evidence-based treatments for cancer cachexia are lacking, leaving patients with unmet needs. Exercise holds promise to improve patient QOL. However, information on patients' experiences of exercise, including their ability to cope with structured exercise, is limited. PURPOSE: To explore patient experiences completing a structured, supervised exercise program for people with cachexia due to advanced cancer. METHODS: Semi-structured interviews were conducted with participants enrolled in a phase II feasibility, randomized controlled trial to explore their experiences of an 8-week virtually supervised exercise program delivered via videoconference technology. Interviews were analysed using reflexive thematic analysis. RESULTS: Seventeen participants completed interviews (female n = 9, 53%). Main interview themes included the following: (1) Deciding to exercise involves balancing concerns and expectations, (2) the exercise program is a positive experience, and (3) moving forward after the exercise program. While some participants initially held doubts about their physical capabilities and exercise safety, most wanted to exercise to enhance their wellbeing. Participants described the exercise program as a positive experience, offering diverse benefits. Some would have preferred in-person exercise, but all agreed the virtual format increased convenience. Participants emphasized the need to recommend the program to others in similar circumstances. They underscored the necessity and desire for ongoing support to sustain their new exercise habits. CONCLUSION: Based on patient experiences, virtually supervised exercise programming appears to be feasible and meaningful to people with advanced cancer and cachexia.

Understanding treatment preferences and cognitive outcomes in patients with gliomas.

OBJECTIVE: Understanding how glioma patients value cognitive outcomes is essential to personalizing their treatment plans. The purpose of this study was to identify the modifiable cognitive functions most affected by treatment and most important to patient quality of life. METHODS: Patients with gliomas were prospectively enrolled in focus groups and individual interviews using a standardized guide focusing on cognitive functions until saturation was achieved. Patient values and treatment preferences were elicited and compared to the frequency of reported deficits. NVivo natural language processing software was used to perform thematic qualitative analyses. Quantitative analysis with Fischer's exact test was used for each cognitive function to assess for an association between experiencing a deficit and rating that function as important to quality of life. RESULTS: Twenty participants participated, of whom 60% were female. Racial identification consisted of 75% White, 15% Black/African American, and 10% Other Racial Identification. The cognitive functions most essential to the quality of life in this cohort were sense of self (80% of participants), memory (70% of participants), and communication (25% of participants). The functions that experienced the most deficits because of treatment were memory (65% of participants), concentration (65% of participants), and special senses (40% of participants). "Dealbreakers" to treatment were complete loss of independence, sense of self, and/or the ability to interact with loved ones. Fischer's exact test showed no associations between experiencing a cognitive function deficit and rating that function as important to quality of life. CONCLUSIONS: Glioma patients in this study prioritized cognitive functions according to memory, personal identity, and their ability to communicate with loved ones independently of experiencing deficits in these functions. Further study should compare patient prioritization and decision-making between surgically curable and noncurable grade gliomas as well as investigate the quality of life benefits of incorporating the connectomics of highly valued cognitive functions in surgical planning.

Lived experience perspectives on eating disorder research: The use of adaptive trials and research priorities.

OBJECTIVE: This novel study sought to understand lived experience and carer perspectives on the use of adaptive trials to evaluate interventions for eating disorders, in addition to understanding the factors and outcomes of most importance in eating disorder research and treatments from a lived experience perspective. METHOD: A total of 73 people with either lived or carer experience consented, 70 started the questionnaire, and 36 (51%) completed all questions. Participants were asked Likert scale and open-ended questions to understand what factors and outcomes of eating disorder interventions were most important to them and understand their pre-existing knowledge of clinical trials. Two videos were then used to explain randomized controlled trials (RCTs) and adaptive trials and participants were asked their opinions, including perceived benefits and concerns, of each trial type. RESULTS: The thematic analysis found two key themes regarding factors important in eating disorder treatment: Person-centred care and Evidence-based and effective treatment; and two key themes regarding outcomes of treatment: Sustained, full recovery and The bigger picture. Both RCTs and adaptive trials were viewed favorably, however, there was a slight preference for adaptive trials. Key themes for both demonstrated perceived benefits and ethical, practical, and scientific considerations unique to each. DISCUSSION: Findings demonstrate the support of adaptive trials in eating disorder interventions from people with lived experience and their carers. It is recommended that researchers consider the use of adaptive designs and the incorporation of lived experience perspectives when designing future intervention trials. PUBLIC SIGNIFICANCE: This novel study found that the use of adaptive trials in eating disorder intervention research is supported by people with lived experience and carers. Furthermore, the factors and outcomes of most importance to participants in this study are comparable to those previously identified in the emerging literature. The use of adaptive designs and the incorporation of lived experience are recommended in further clinical trials.

"They Mostly Preached Abstinence Which Didn't Work": Young Adults' Perception of Sex-Related Messages from Caregivers Prior to Initiation of Sex.

Parental communication about sex is an important aspect of sexual socialization. However, research has primarily focused on sexual communication's presence, frequency, or topics, with less research on the specific messages parents communicate. Further, few studies have differentiated between communication received before and after youth initiated sex. Therefore, in this paper, we coded open-ended survey responses to explore the sex-related messages young adults report receiving from their caregiver(s) before they began engaging in sex. As part of a larger study, 381 U.S. young adults (Mage = 21.0 years, SD = 2.0) completed an online survey and responded to an open-ended question about messages their caregiver(s) communicated before they began engaging in sex. Participants identified as cisgender women (62.2%), cisgender men (12.1%), and gender diverse (25.7%), and were primarily lesbian, gay, bisexual, queer, questioning, or otherwise non-heterosexual (LGBQ+; 70.6%) young adults. Through thematic analysis, we identified six themes for caregivers' sex-related messages: sex-restrictive, safety and consequences, no, negative, sex-positive, and informational messages. In addition, we found that messages varied by young adults' gender identity and sexual orientation. Our findings suggest that young adults may not receive proper education about healthy sexual relationships and demonstrate the need for interventions with caregivers, as well as sexual health resources for adolescents and young adults, particularly LGBTQ+ youth.

'Before, we ended up in conflicts, now we can provide support'-Experiences of Community Reinforcement and Family Training (CRAFT) for parents of young adults with hazardous substance use.

BACKGROUND: The prevalence of hazardous substance use is highest in the age between 18 and 25, but few young adults enter treatment. Community Reinforcement and Family Training (CRAFT) is a support program for concerned significant others (CSOs) of individuals with diverse substance use disorders and is proven efficacious in promoting treatment entry. The aim of the current study was to investigate the experiences of CRAFT among parents of substance using young adults. METHODS: We used a qualitative design conducting semi-structured interviews with 10 parents of young adults (18-24 years) with hazardous substance use. The participants were recruited from a randomized controlled trial of the CRAFT program. The transcribed interviews were analyzed using thematic analysis. RESULTS: We divided the results into three overall domains-Reasons for entering the CRAFT program, Strengths of the CRAFT program and Limitations of the CRAFT program - with three to four themes under each domain. The parents appreciated the accessible support at a time when they needed it due to feelings of shock and powerlessness, and they described communication strategies together with positive reinforcement as the two most helpful CRAFT-sessions. Regarding limitations of CRAFT in the current population, the parents wanted more accessible support for the young adults when they were ready to enter treatment, and described difficulties to practice CRAFT-components due to changing life-circumstances and fear of aggravated health for their young adults. CONCLUSION: The results provide arguments for the health care system to implement support programs to parents of young adults with hazardous substance use. The results show that CRAFT is suitable for the current population, but with some possible additions due to changing circumstances that are common in the young adult developmental phase emerging adulthood. TRIAL REGISTRATION: The trial was pre-registered at isrctn.com, reference number ISRCTN12212515 date: November 7, 2018.

Abortion care at 20 weeks and over in Victoria: a thematic analysis of healthcare providers' experiences.

BACKGROUND: In many countries, abortions at 20 weeks and over for indications other than fetal or maternal medicine are difficult to access due to legal restrictions and limited availability of services. The Abortion and Contraception Service at the Royal Women's Hospital in Victoria, Australia is the only service in the state that provides this service. The views and experiences of these abortion providers can give insight into the experiences of staff and women and the abortion system accessibility. The aim of this study was to examine health providers' perceptions and experiences of providing abortion care at 20 weeks and over for indications other than fetal or maternal medicine, as well as enablers and barriers to this care and how quality of care could be improved in one hospital in Victoria, Australia. METHODS: A qualitative study was conducted at the Abortion and Contraception Service at the Royal Women's Hospital. Participants were recruited by convenience and purposive sampling. Semi-structured interviews were conducted one-on-one with participants either online or in-person. A reflexive thematic analysis was performed. RESULTS: In total, 17 healthcare providers from medicine, nursing, midwifery, social work and Aboriginal clinical health backgrounds participated in the study. Ultimately, three themes were identified: 'Being committed to quality care: taking a holistic approach', 'Surmounting challenges: being an abortion provider is difficult', and 'Meeting external roadblocks: deficiencies in the wider healthcare system'. Participants felt well-supported by their team to provide person-centred and holistic care, while facing the emotional and ethical challenges of their role. The limited abortion workforce capacity in the wider healthcare system was perceived to compromise equitable access to care. CONCLUSIONS: Providers of abortion at 20 weeks and over for non-medicalised indications encounter systemic enablers and barriers to delivering care at personal, service delivery and healthcare levels. There is an urgent need for supportive policies and frameworks to strengthen and support the abortion provider workforce and expand provision of affordable, acceptable and accessible abortions at 20 weeks and over in Victoria and in Australia more broadly.

What constitutes an employer of choice? A qualitative triangulation investigation.

Employer of choice (EOC) is a relatively new phenomenon, particularly in Human Resources Management. Existing employees and prospective talent have reasons and expectations to designate an employer as an EOC. While EOC has received extensive attention from both academics and practitioners over the past few years, the work has mostly focused on managerial and marketing perspectives, and thus far lacks a strong theoretical foundation. Drawing on Social Exchange Theory (SET), based on Human Resources and employees' perceptions and experiences, this research aims to explore and investigate the factors that constitute/designate an employer as an Employer of Choice EOC. Two qualitative triangulated data sets were collected from existing full-time employees at a Saudi multinational corporation: open interviews and document analysis (cross-sectional and longitudinal). Thematic analysis (TA) was employed to analyze both methods. The findings reveal that company image, training, and development, satisfaction, involvement and commitment, fairness, work culture, reward, opportunities for growth, teamwork, motivation, and corporate social responsibility are the factors that lead employees to designate an employer as an EOC. This research contributes to knowledge conceptually, theoretically, and empirically, mainly in the area of Human Resources Management. This research represents one of the first studies to empirically identify and investigate employee-related factors and evaluate them all together in a multinational Saudi organization. Recognizing the findings of this empirical-based research assists HR managers in designating their organizations as an EOC for current employees and prospective talents.

Assisted reproductive technology (ART) patient information-seeking behavior: a qualitative study.

BACKGROUND: Approximately 13% of women in the United States of reproductive age seek infertility services. Assisted reproductive technology (ART), including in vitro fertilization, is used to help patients achieve pregnancy. Many people are not familiar with these treatments prior to becoming patients and possess knowledge gaps about care. METHODS: This study employed qualitative methods to investigate how patients interact with information sources during care. Patients who underwent ART including embryo transfer between January 2017 and April 2022 at a large urban healthcare center were eligible. Semi-structured, in-depth interviews were conducted between August and October 2022. Fifteen females with an average age of 39 years participated. Reflexive thematic analysis was performed. RESULTS: Two main themes emerged. Participants (1) utilized clinic-provided information and then turned to outside sources to fill knowledge gaps; (2) struggled to learn about costs, insurance, and mental health resources to support care. Participants preferred clinic-provided resources and then utilized academic sources, the internet, and social media when they had unfulfilled information needs. Knowledge gaps related to cost, insurance, and mental health support were reported. CONCLUSION: ART clinics can consider providing more information about cost, insurance, and mental health support to patients. TRIAL REGISTRATION: The Massachusetts General Hospital Institutional Review Board approved this study (#2022P000474) and informed consent was obtained from each participant.

"Counteract the gaslighting" - a thematic analysis of open-ended responses about what women survivors of intimate partner sexual violence need from service providers.

BACKGROUND: Intimate partner sexual violence (IPSV) is a prevalent but misunderstood form of gender-based violence with significant impacts women's health and well-being. Research suggests that IPSV has a specific context and unique impacts, but little is known about how to tailor service responses. To address this gap, we explored help-seeking experiences and needs among IPSV survivors after disclosure. METHODS: This study draws on qualitative data from a subsample of women who participated in a cross-sectional survey about the service needs of intimate partner violence survivors. Women who reported IPSV and provided information about IPSV-specific help-seeking needs after disclosure were included in the analysis. Open-ended text responses of 37 IPSV survivors were analysed using thematic analysis. RESULTS: IPSV was invisible and silenced in service responses. Three themes suggest potential ways forward. In the first theme, 'Don't dismiss it', women needed providers to take their disclosures seriously and listen to the significant impacts of IPSV on their well-being and safety. In the second theme, 'See the bigger picture', women needed service providers to understand that IPSV fits into broader patterns of abuse, and that psychological abuse and coercive control impacts women's ability to consent. In the third theme, 'counteract the gaslighting', women needed providers to educate them about the continuum of IPSV and help them label IPSV as a form of violence. CONCLUSIONS: Our exploratory findings extend the limited evidence base on IPSV and highlight a need for further in-depth research to explore a tailored approach to supporting IPSV survivors. To avoid contributing to the silencing of IPSV survivors, service responses should recognise the harmful and sexualised nature of IPSV, challenge cultural stereotypes that minimise IPSV, and understand that co-occurring psychological abuse may exacerbate shame and prevent women from articulating the source of their distress.

Still a 'boys' club': a qualitative analysis of how gender affects a career in anaesthesia in Australia and Aotearoa New Zealand.

Gender inequity remains an issue in anaesthesia despite increasing numbers of women training and achieving fellowship in the speciality. Women are under-represented in all areas of anaesthetic research, academia and leadership. The Gender Equity Subcommittee of the Australian and New Zealand College of Anaesthetists recently conducted a survey asking "Does gender still matter in the pursuit of a career in anaesthesia in 2022?". The survey was distributed to a randomly selected sample of 1225 anaesthetic consultants and completed by 470 respondents (38% response rate) with 793 free-text comments provided. Three overarching themes were identified: gender effects on the career and family interface; women do not fit the mould; and gender equity changes the status quo. Women respondents described a need to make a choice between career and family, which was not described by men, as well as stigmatisation of part-time work, a lack of access to challenging work and negative impacts of parental leave. Women respondents also described a sense of marginalisation within anaesthesia due to a 'boys' club' mentality, a lack of professional respect and insufficient structural supports for women in leadership. This was compounded for women from ethnically and culturally diverse backgrounds. A need for specific strategies to support anaesthetic careers for women was described as well as normalisation of flexibility in workplaces, combined with a broadening of our definition of success to allow people of all genders to experience fulfilment both at home and at work. This study is the first published qualitative data on factors affecting gender equity for anaesthetists in Australia and Aotearoa New Zealand. It highlights the need for further exploration, as well providing a foundation for changes in attitude and structural changes towards advancing gender equity.

Young Spouses' Experiences of Having a Partner With Heart Disease and Adolescents Living at Home.

AIM: To describe the life situation of spouses having a partner with heart disease and adolescents living at home. DESIGN: Qualitative inductive design. METHOD: Participants (n = 22) were included from three Scandinavian countries. Semi-structured interviews were analysed using thematic analysis with an inductive and latent approach. RESULTS: Three themes were derived. 'Being in spousal and parental role transition' described how daily life had been affected and parental responsibilities had been doubled due to their partner's heart disease. 'Living with unpredictability and insecurity' included how the unpredictable illness trajectory caused worries and affected the well-being of the family. 'Managing a challenging life situation' highlights how spouses coped with their partners' heart disease and adapted to a new life situation. CONCLUSION: Young spouses' life situation was greatly affected by their partner's heart disease, resulting in increased responsibilities and double parenthood. Having a positive attitude and mindset towards life was used as a strategy to cope with the changed life situation and find a new way of life. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: All family members are affected by heart disease. Spouses needed additional professional support and guidance on how to involve the children when a parent is ill. IMPACTS: This study highlights how young spouses, with adolescents living at home, experience their life situation. The life situation is unpredictable due to the partner's heart disease, as they must handle both caring for their partner and taking on double parenthood. Research involving family members can improve person- and family-centred care and treatment outcomes in health care and society. REPORTING METHOD: COREQ checklist was used preparing the manuscript. PATIENT OR PUBLIC CONTRIBUTION: Data collection included interviews with spouse. WHAT DOES THIS PAPER CONTRIBUTE TO THE WIDER GLOBAL CLINICAL COMMUNITY?: By highlighting the spouses changed life situation due to heart disease and the importance of including them in health care.

Factors impacting clinical data and documentation quality in Australian aged care and disability services: a user-centred perspective.

BACKGROUND: Research has highlighted a need to improve the quality of clinical documentation and data within aged care and disability services in Australia to support improved regulatory reporting and ensure quality and safety of services. However, the specific causes of data quality issues within aged care and disability services and solutions for optimisation are not well understood. OBJECTIVES: This study explored aged care and disability workforce (referred to as 'data-users') experiences and perceived root causes of clinical data quality issues at a large aged care and disability services provider in Western Australia, to inform optimisation solutions. METHODS: A purposive sample of n = 135 aged care and disability staff (including community-based and residential-based) in clinical, care, administrative and/or management roles participated in semi-structured interviews and web-based surveys. Data were analysed using an inductive thematic analysis method, where themes and subthemes were derived. RESULTS: Eight overarching causes of data and documentation quality issues were identified: (1) staff-related challenges, (2) education and training, (3) external barriers, (4) operational guidelines and procedures, (5) organisational practices and culture, (6) technological infrastructure, (7) systems design limitations, and (8) systems configuration-related challenges. CONCLUSION: The quality of clinical data and documentation within aged care and disability services is influenced by a complex interplay of internal and external factors. Coordinated and collaborative effort is required between service providers and the wider sector to identify behavioural and technical optimisation solutions to support safe and high-quality care and improved regulatory reporting.

'Leaving the Door Open': Perspectives on Decision-Making for Non-Emergency Diabetes-Related Amputation.

INTRODUCTION: Having a lower extremity amputation is a life-changing decision for people living with a diabetes-related foot ulcer. Although previous research has described both positive and negative lifestyle and function outcomes of diabetes-related amputations, limited research has been conducted on the decision-making processes leading up to the amputation. This study aimed to explore the perspectives of persons, healthcare practitioners and experts (including academics and specialists) on decision-making for people with a diabetes-related foot ulcer who may require a non-emergency amputation. METHODS: A qualitative descriptive study using semi-structured interviews enabled people to share their thought processes when making decisions for amputation. Twenty-six participants were interviewed, including nine people with a diabetes-related foot ulcer or amputation, nine health practitioners and eight experts located across five countries. There were 13 female and 13 male participants. Thematic analysis was used for data analysis. RESULTS: Four themes described the decision-making considerations for amputation: 'Balancing the evidence in decision-making', 'Trust, respect and timing of conversations inform decision-making', 'Tailoring decisions for individual circumstance' and 'Reaching the tipping point in decisions for the future'. Work commitments, functional and lifestyle impacts of amputation, the presence of support networks and clinical wound features formed the evidence for a decision for amputation. CONCLUSION: Understanding quality of life needs ensured that decisions for amputation addressed expectations and lifestyle needs. Living with a diabetes-related foot ulcer presented daily challenges that pushed people to a tipping point, at which amputation was considered to overcome these hardships and enable them to move on to the next chapter of their life. Further research is required to understand how person-centred factors can be better incorporated alongside objective clinical assessments in decisions for amputation. PATIENT OR PUBLIC CONTRIBUTION: People with diabetes-related foot ulcers, health practitioners and experts shared their perspectives on the decision-making process for amputation through one-to-one interviews. Consideration of the person in the context of their life, environment and personal needs alongside the pathological factors is warranted.

Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end-of-life.

BACKGROUND: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long-term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end-of-life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. RESEARCH DESIGN AND OBJECTIVE: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. FINDINGS: Thirty-eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. DISCUSSION AND IMPLICATIONS: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. PATIENT OR PUBLIC CONTRIBUTION: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.