The black box of the relationship between breast cancer patients and accompanying patients: the accompanied patients' point of view.

BACKGROUND: The PAROLE-Onco program was introduced in the province of Quebec, Canada in 2019. It integrates accompanying patients (APs), i.e., people who have been affected by cancer, into the clinical team as full members. These APs use their experiential knowledge with people undergoing treatment and with clinical teams. The aim of this paper is to evaluate, within the framework of two university medical centers, the perceptions of breast cancer patients who receive support from APs, particularly in terms of their active involvement in their care trajectory. METHODS: A qualitative study based on semi-structured interviews with accompanied patients was performed. Fourteen individual interviews were conducted between July and September 2021 with women presenting different profiles in terms of age, education, professional status, type of treatment, family situation, and clinical background. The data were analyzed using thematic analysis, focusing on patients' perceptions of APs' contributions and suggested improvements for accessing AP support. RESULTS: Three themes emerged from the semi-structured interviews: communication modalities used to connect patients with their APs, the characteristics of the support provided by APs, and the perceived effects of this support on the patients. Patients expressed a preference for telephone communication, highlighting its convenience and accessibility. The support provided by APs included emotional and informational support, neutrality, and adaptability. This relationship improved patient communication, reduced anxiety, helped regain control, and enhanced overall quality of life. The results emphasized the added value of APs in complementing the support offered by healthcare professionals. Patients noted the critical role of APs in helping them navigate the healthcare system, better understand their treatment processes, and manage their emotions. The ability of APs to provide practical advice and emotional reassurance was particularly valued. Overall, the findings underscored the significant impact of AP support on patients' experiences and highlighted areas for enhancing this service. CONCLUSION: This study highlights, during the care trajectory of people affected by breast cancer, APs' contribution to patients' emotional well-being because they improve, in particular, the management of emotions and communication with health professionals.

In 2019, we initiated the PAROLE-Onco program in Quebec, Canada, to support cancer patients by integrating Accompanying Patients (APs) into the medical team. These individuals, who have personally experienced cancer, join as full team members, sharing their insights with both patients and medical staff. Our study delved into the perceptions of breast cancer patients at two university hospitals regarding APs' involvement in their care trajectory. Through interviews with 14 women of diverse backgrounds and cancer experiences, we found that APs were instrumental in enhancing communication with doctors, facilitating the expression of challenging emotions, and aiding in treatment decisions. Patients valued the inclusion of APs in their care team and expressed gratitude for their support. Nonetheless, some encountered difficulties in reaching out to APs due to a lack of awareness or challenges involved in connecting. Overall, our research underscores the positive impact of involving APs in the care of breast cancer patients, and of enhancing emotional well-being and communication throughout the treatment journey.

Psychometric Properties of the Persian Version of the Intensive Care Experience Questionnaire (ICE-Q).

Background and Purpose: It is important to assess the experience of patients who have been admitted to an intensive care unit to provide the best treatment and nursing care possible. Therefore, a valid and reliable tool is necessary for measurement. This study aimed to determine the psychometric properties of the Persian version of the Intensive Care Experience Questionnaire (ICEQ) for open-heart surgery patients. Methods: The study was conducted in four steps: translation, face and content validity, confirmatory factor analysis, and reliability assessment. The adapted questionnaire was administered to 200 Iranian cardiac surgery patients who had received treatment in an intensive care unit within the past month. Results: In the final Persian version of ICEQ, there are 4 factors and 21 items. Following the translation and cultural adaptation process, the content validity was evaluated. Three items had content validity ratio < 0.6, so they were deleted. Scale-level content validity index/Average was 0.81 and more than 0.7 for each item on the scale. This scale was validated through confirmatory factor analysis using fit indicators (comparative fit index, normalized fit index, root mean square error of approximation, and chi-square). There was Cronbach's alpha of 0.71-0.85, and intraclass correlation coefficients were 0.82-0.93 for subscales. Conclusions: The Persian version of ICEQ showed appropriate psychometric properties. This scale may be useful to inform the development of effective interventions to improve subsequent outcomes for Iranian open-heart surgery patients.

Patient-reported outcomes and experiences of migrants enrolled in a multidisciplinary HIV clinic with rapid, free, and onsite treatment dispensation: the 'ASAP' study.

BACKGROUND: Scholars recommend providing migrants living with HIV (MLWH) with free treatment, rapidly, once linked to care to optimize their HIV-related experiences and health outcomes. Quantitative evaluations of patient-reported measures for MLWH in such models are necessary to explore the viability of these recommendations. METHODS: Within a 96-week prospective cohort study at a multidisciplinary HIV clinic, participants received bictegravir/emtricitabine/tenofovir alafenamide (B/F/TAF) for free and rapidly following care linkage. Eight patient-reported measures were administered at weeks 4, 24, and 48: (1) mMOS-SS to measure perceived social support; (2) IA-RSS to measure internalized stigma; (3) K6 to measure psychological distress; (4) PROMIS to measure self-efficacy with treatment taking; (5) G-MISS to measure perceived compliance with clinicians' treatment plans; (6) HIVTSQ to measure treatment satisfaction; (7) CARE to measure perceived provider empathy; and (8) PRPCC to measure perceived clinician cultural competence. Linear mixed modelling with bootstrapping was conducted to identify significant differences by sociodemographics and time. RESULTS: Across weeks 4, 24, and 48, results suggest that MLWH enrolled in this study experienced moderate levels of social support; elevated levels of HIV-related stigma; moderate levels of distress; high self-efficacy with daily medication self-management; great compliance with clinicians' treatment plans; high treatment satisfaction; high perceived empathy; and high perceived cultural competence. Experience of social support (i.e., mMOS-SS scores) differed significantly by birth region. Experience of HIV-related stigma (i.e., IA-RSS scores) differed significantly by birth region, age, and language. Experience of distress (i.e., K6 scores) differed significantly by sexual orientation. Experience of treatment satisfaction (i.e., HIVTSQ scores) differed significantly by birth region and age. No significant differences were identified by time for any measure. CONCLUSION: Overall, participants expressed positive experiences around treatment and care, alongside comparably lower perceptions of social support, internalized stigma, and distress, potentially underscoring a need to embed targeted, well-funded, and accessible mental health support within HIV care models.

[Patient-partnership in a comprehensive cancer centre: Establishment and roles of a patients and caregivers committee]. / Partenariat patient dans un centre de lutte contre le cancer : mise en place et rôles d'un comité de patients et aidants.

In oncology, the place of patients has a natural and strong legitimacy. Cancer is a common disease, with many singularities but also common features between pathologies, with issues ranging from prevention to possible palliative phases or post-cancer, and conducive to both individual and collective decision-making processes. Patient engagement is now essential at all levels of the healthcare system, from simple information to real involvement (co-construction). For 20 years, Gustave-Roussy, a comprehensive cancer centre in Villejuif, has implemented specific reflection and actions, embodied by the creation of a patients and caregivers committee and complemented by an institutional steering body that illustrates the transformation of "working for" into "working with". At the level of direct care, the main works promoted concern shared-decision-making between patient and professional and accompanying patients. At the institutional level, we find the expertise of hospital projects or services, the development of institutional documents (information and advance directives form, etc.), and internal evaluation (audit). At the political level, participation in Unicancer's patient-experience working group has allowed for a better coordinated deployment with other centers. Unicancer has developed a lexical guide defining patient resources, peer helpers, trainers, evaluators and coordinators. This partnership approach is beneficial for patients, their loved ones, caregivers, and must be amplified and give rise to new research work.

Beyond the Burden: A Qualitative Inquiry into the Experiences of Chinese Informal Caregivers for People Living with HIV or AIDS.

Purpose: Informal caregivers are defined as families or close friends of patients, which take considerable responsibilities for providing care to people living with HIV/AIDS (PLWHA). Although there have been a number of studies in caregiver of PLWHA, research studies that sought to quantify the effects of informal caregiving for the caregivers failed to successfully provide empirical understanding of the nature of caregiving experience. Therefore, this study adopted a qualitative approach to explore the experiences and feelings of caregivers of PLWHA during the long-term care process. Methods: The qualitative study was conducted in August 2023 in Beijing, China. Data were collected through individual in-depth semi-structured interviews with informal caregivers of PLWHA. Theme analysis was used to identify themes from the interview transcripts. Results: A total of 21 participants were recruited into our study, 16 were family members of PLWAHA, and 5 were homosexual lover or close friend of PLWHA. Three major themes and ten sub themes were identified by thematic analysis: (1) care burden experience (including 5 sub-themes: negative emotional experience, psychological burden, economic burden, physical health loss and limitation of social interaction); (2) benefit findings from care (including 3 sub-theme: positive emotional experience, perceived social support, health promotion); (3) Demands for caregiving capacity (including 2 sub-theme: inadequate caregiving capacity and inadequate psychological comfort capacity). Conclusion: This qualitative study provides a comprehensive exploration of the experiences faced by informal caregivers of PLWHA in China, uncovering the complex spectrum of psychological, physical, social, and economic challenges inherent in their caregiving roles, while predominantly challenging, caregivers also reported personal growth, increased social support, and emotional fulfillment. The research results could help in developing effective interventions to reduce the caregiver burden and improve their mental health.

Experiences of breastfeeding peer counseling among women with low incomes in the US: a qualitative evaluation.

BACKGROUND: Person-centered breastfeeding counseling is a key but often overlooked aspect of high-quality services. We explored women's experiences of the Breastfeeding Heritage and Pride™ program, an evidence-based breastfeeding peer counseling program serving women with low incomes in the United States. METHODS: This study was conducted through an equitable community-clinical-academic partnership and guided by the World Health Organization (WHO) quality of care framework for maternal and newborn health, which highlights three domains of positive experiences of care: effective communication; respect and dignity; and emotional support. In-depth interviews were conducted with a purposive sample of women participating in the Breastfeeding Heritage and Pride™ program. Women were asked to describe their experiences with the program including examples of when good quality counseling was or was not provided. Each interview was conducted in English or Spanish, audio-recorded, and transcribed verbatim. Data were analyzed using reflexive thematic analysis. Once themes were generated, they were organized according to the three care experience domains in the WHO quality of care framework. RESULTS: Twenty-eight in-depth interviews were conducted with a racially/ethnically and socio-economically diverse sample of women. Three themes described effective communication practices of peer counselors: tailoring communication to meet women's individual needs; offering comprehensive and honest information about infant feeding; and being timely, proactive, and responsive in all communications across the maternity care continuum. Two themes captured why women felt respected. First, peer counselors were respectful in their interactions with women; they were courteous, patient, and non-judgmental and respected women's infant feeding decisions. Second, peer counselors showed genuine interest in the well-being of women and their families, beyond breastfeeding. The key theme related to emotional support explored ways in which peer counselors offered encouragement to women, namely by affirming women's efforts to breastfeed and by providing reassurance that alleviated their worries about breastfeeding. These positive experiences of counseling were appreciated by women. CONCLUSIONS: Women described having and valuing positive experiences in their interactions with peer counselors. Efforts to expand access to high-quality, person-centered breastfeeding counseling should, as part of quality assurance, include women's feedback on their experiences of these services.

Care-experienced young people's views on what they want from mental health services.

This study explores what care-experienced young people want from mental health services. Six care-experienced young people were interviewed, and an interpretative phenomenological analysis applied. Three key themes emerged demonstrating that the way support is delivered, the people who deliver it, and the environment of mental health services are all important to care-experienced young people. Along with these findings, this study demonstrates that engaging vulnerable young people in research and service design is beneficial.

This study explores what care-experienced young people want from mental health services. Six care-experienced young people were interviewed. Themes that emerged from interviews showed that the type of support that was delivered, the people who deliver the support, and the environment in which the support is delivered were all important to young people. This study shows that engaging young people in research and service design is beneficial.

Integrating accompanying patients into clinical oncology teams: limiting and facilitating factors.

OBJECTIVES: Since 2018, four establishments in Quebec have been instrumental in implementing the PAROLE-Onco program, which introduced accompanying patients (APs) into healthcare teams to improve cancer patients' experience. APs are patient advisors who have acquired specific experiential knowledge related to living with cancer, using services, and interacting with healthcare professionals. They are therefore in a unique and reliable position to be able to provide emotional, informational, cognitive and navigational support to patients who are dealing with cancer. We aimed to explore APs' perspectives regarding the limiting and facilitating factors in terms of how they are integrated into the clinical oncology teams. METHODS: A qualitative study based on semi-structured interviews and focus groups was conducted with 20 APs at the beginning of their intervention (T1) and, two years later, during a second data collection (T2). Limiting and facilitating factors of APs' integration into clinical teams were analyzed in terms of governance, culture, resources and tools. RESULTS: The limited factors raised by APs to be integrated into clinical teams include the following: confusion about the specific roles played by APs, lifting the egos of certain professionals who feel they are already doing what APs typically do, lack of identification of patient needs, absence of APs in project governance organizational boundaries, and team members' availability. Various communication challenges were also raised, resulting in the program being inadequately promoted among patients. Also mentioned as limiting factors were the lack of time, space and compensation. Creating opportunities for team members to meet with APs, building trust and teaching team members how APs' activities complement theirs were enhancing factors. Other facilitators include APs being involved in decision-making committees, being leaders in promoting the PAROLE-Onco program to patients and clinical team members and creating opportunities to communicate with team members to help enhance their work and provide feedback to improve patient services. Awareness of APs' added value for the team and patients is also a key facilitator. Regarding tools, offering accompanying services by telephone allows both patients and APs to benefit from the flexibility they need. CONCLUSION: Over time, APs were able to identify optimal factors for successful implementation. Recommendations include APs and professionals working in co-construction on organization, leadership, resources and status factors. This could help catalyze a change in culture within health establishments and allow people dealing with cancer to benefit from the experiential knowledge of other patients within their clinical team.

Measuring the intensive care experience of intensive care unit patients: A cross-sectional study in western China.

BACKGROUND: The negative experiences of intensive care unit (ICU) patients seriously affect their quality of life and survival outcomes. Thus, it is of great significance to evaluate the monitoring experience of ICU patients for the clinical improvement of their experiences and promote interventions. OBJECTIVES: The objective of this study was to investigate patients' experiences of ICU and to understand the sources of patient experience and influencing factors. METHODS: From November 2021 to September 2022, a cross-sectional survey was conducted with 600 inpatients from four grade A-III hospitals in western China. Data were collected using the Chinese version of the Intensive Care Experience Questionnaire. RESULTS: 585 valid questionnaires were collected, the response rate was 97.5%. ICU patients in western China scored below-the-average for their intensive care experience. Family monthly income, occupation types, medical payment method, type of ICU, ICU admission plan, ICU admission times, mechanical ventilation use, fertility status, analgesia, sedation, and Acute Physiology and Chronic Health Evaluation II scores are important factors influencing ICU patients' intensive care experience. CONCLUSIONS: Medical staff need to pay attention to patient experience, improve the awareness of patient stressors and influencing factors, design nursing programs conducive to patient-positive experience, and promote interventions to further improve the long-term prognosis of patients. The results of this study can also be used as a set of nursing-sensitive indicators for evaluating nursing structure, process, and outcomes.

Public awareness of advance care planning and hospice palliative care: a nationwide cross-sectional study in Korea.

CONTEXT: Advance care planning (ACP) and hospice palliative care (HPC) have potential benefits for individuals and health systems. Public awareness of them might increase their acceptance. OBJECTIVES: To examine public awareness of ACP and HPC and related factors including individuals' experience of health care among Korean population. METHODS: A cross-sectional study based on a nationally representative sample was conducted. Data from participants aged 15 years or older were examined. Socio-demographic characteristics, health-related factors, health care experience in the past year, and awareness of ACP and HPC were analyzed. Subgroup analysis was conducted to determine associations between specific experiences during outpatient visit and awareness of ACP and HPC. RESULTS: Of a total of 13,546 subjects, 39.3% and 35.7% reported awareness of ACP and HPC, respectively. About half (48.6%) of participants reported that they were completely unaware of ACP or HPC. Recent outpatient visit was positively associated with HPC awareness. Participants were more likely to recognize ACP or HPC if they had experience in hospitalization and health checkup over the past year and had trust in the medical system. Conversely, participants who had inadequate health care access due to cost burden showed low awareness of ACP and HPC. CONCLUSION: There was a lack of public awareness of ACP and HPC. There were significant differences depending on various factors, especially individual health care experiences. Appropriate interventions are needed to facilitate discussion of ACP and HPC, thereby increasing public awareness.

Perspectives and experiences of mothers of school-age children with asthma: a qualitative study.

INTRODUCTION AND AIMS: This study aimed to explore the perspectives and experiences of mothers of school-age children with asthma in care. METHODS: A phenomenological study was conducted using qualitative research methods from August 2021 to November 2021. Mothers (from Sichuan, China) of school-aged children with asthma who sought outpatient care at the pediatric asthma clinic were purposively sampled based on their occupation, education level, and duration of their child's illness. Semi-structured face-to-face interviews were conducted in consultation room A07 of the pediatric asthma clinic. The interviews were audio-recorded, transcribed verbatim, and analyzed thematically. RESULTS: 23 mothers expressed interest, but data saturation was reached after recruiting 15 mothers.Four main themes encompassing ten sub-themes emerged from the analysis: (1) Negative psychological burden, with sub-themes including anxiety shock, fear of death, guilt, and stigma. (2) Family dysfunction, with sub-themes including impaired quality of life, family emotional crisis, and heavy economic burden. (3) Difficulty in seeking medical treatment. (4) Active response, with sub-themes including emotional adjustment, family empowerment, and social support. CONCLUSIONS: In this sample, the caregiving experience of mothers of school-age children with asthma is diverse and complex, reflected not only in personal psychological aspects but also in family functioning and social support. Taking into account various factors, such as addressing psychological well-being, emphasizing family and social support, and promoting the sharing of positive experiences, may result in more effective alleviation of caregiving stress for mothers of school-age children with asthma.

Cognitive and affective control for adolescents in care versus their peers: implications for mental health.

BACKGROUND: Many adolescents who have been removed from the care of their biological parent(s) and placed in State or Local Authority care have experienced significant adversity, including high rates of maltreatment and other trauma(s). As a group, these young people experience far higher rates of mental health difficulties compared to their peers. While their mental health outcomes are well-documented, little is known about mechanisms that may drive this. One potential mechanism, linked to both trauma and adversity exposure and mental health, is affective control (the application of cognitive control in affective contexts). METHODS: We compared cognitive and affective control in 71 adolescents (65% girls) in care aged 11-18 (M = 14.82, SD = 2.10) and 71 age and gender-matched peers aged 11-19 years (M = 14.75, SD = 1.95). We measured cognitive and affective control using standard experimental tasks, and for those in care, we also examined associations with self-reported emotion regulation, mental health, and school well-being. RESULTS: After controlling for IQ, there was a significant group difference in affective control performance, with those in care on average performing worse across all tasks. However, further analyses showed this was driven by deficits in overall cognitive control ability, and was not specific to, or worsened by, affective stimuli. Further, we found no evidence that either cognitive or affective control was associated with emotion regulation abilities or the mental health and well-being of young people in care. CONCLUSIONS: Results suggest that cognitive and affective control may not underlie mental health for young people in care, though limitations should be considered. We discuss implications for theory and intervention development, and avenues for further research. TRIAL REGISTRATION: https://doi.org/10.17605/OSF.IO/QJVDA.

Barriers for why pregnant women do not visit a dentist on a regular basis: using group concept mapping methodology.

OBJECTIVES: Periodontitis in pregnancy represents a significant, but often overlooked challenge due to its association to adverse pregnancy (preeclampsia and gestational diabetes) and birth related outcomes (preterm birth and low birth weight). The overall study aim was to identify, organize, and prioritize barriers influencing dental visits among Danish pregnant women not seeing a dentist on a regularly basis. MATERIALS AND METHODS: Participants were pregnant women screened at weeks 11-13 of gestation, and were recruited if they were not seeing a dentist regularly. The study was conducted at Holbæk and Nykøbing Falster Hospital in Region Zealand, Denmark. The Group Concept Mapping (GCM) approach was applied. The pregnant women participated in brainstorming (n = 18), sorting (n = 20), and rating (n = 17) the seating question 'Thinking as broadly as you can, please list all barriers of importance to you for not seeing a dentist on a regular basis'. RESULTS: A total of 38 unique barriers were identified, organized, and prioritized online. The multidimensional scaling analysis involved 10 iterations and revealed a low stress value of 0.21. A cluster solution with five clusters including 'economic reasons', 'lack of priority', 'lack of time and energy', 'no problems with teeth', and 'dental fear', was discussed and interpreted at a validation meeting. CONCLUSIONS: Five overall clusters explaining barriers for not seeing a dentist regularly were revealed. Of the five clusters, 'economic reasons' and 'lack of priority' were rated as the most important clusters. Accordingly, such barriers should be considered in the planning of future strategies of dental care during pregnancy.

Obtaining feedback from patients and their family in the emergency department.

Obtaining feedback from the patient and their family members regarding their experience of the care they received in the emergency department is important. This provides an extremely valuable opportunity for healthcare professionals to assess the quality of care and serves to highlight any areas of weakness or strength in the care experience. Through a synthesis of available literature, this article describes the challenges in measuring such an experience especially in emergency departments in Africa, and outlines tools that are currently available in literature to measure the patient and family experience and or satisfaction. Implementation considerations are outlined in order to provide recommendations for emergency department healthcare professionals wanting to undertake such assessments.

The care experience for people undergoing a liver transplantation. Descriptive phenomenological investigation in a Belgian academic hospital / L'expérience des soins des personnes qui vivent une transplantation hépatique. Recherche phénoménologique descriptive au sein d'un hôpital académique belge

This study aims to describe and understand the care experience for people having undergone a liver transplantation in a Belgian academic hospital and the elements of an ideal care experience for them. The descriptive phenomenological method of the « Relational Caring Inquiry ¼ was used with twelve participants whose stories were collected through three semi-structured individual interviews. These interviews gave an overall picture of their care experience, summarized as « the feeling of having benefited from the support of both the body and mind in a Humanist-Caring dynamic, but with difficulties linked to organizational and environmental factors in finding a new balance. ¼ The essence of their ideal care experience consists of « benefiting from the support of both the body and mind by competent professionals, in a Humanist-Caring climate and a dynamic of partnership with the patient, in an institution that is welcoming in terms of its organization and environment. ¼ Based on these results, it seems essential to limit organizational constraints to consolidate the Humanist-Caring dynamic, to develop the patient partnership, and to pay special attention to the patient's relatives, resulting in structured support.

Cette étude vise à décrire et comprendre l'expérience des soins des personnes ayant vécu une transplantation hépatique dans un hôpital académique belge, ainsi que ce qui constituerait pour eux les éléments d'une expérience idéale des soins. La méthode phénoménologique descriptive « Investigation Relationnelle Caring ¼ a été utilisée auprès de douze participants dont le récit a été recueilli, pour chacun, au moyen de trois entrevues individuelles semi-dirigées. Cela a permis d'élucider l'essence globale de leur expérience des soins, résumée comme « le sentiment d'avoir bénéficié d'un accompagnement du corps et de l'esprit dans une dynamique humaniste-caring, mais d'éprouver cependant des difficultés à retrouver un nouvel équilibre, liées à des facteurs organisationnels et environnementaux ¼. Quant à l'essence de leur expérience idéale des soins, elle consiste à « bénéficier d'un accompagnement du corps et de l'esprit par des professionnels compétents, dans un climat humaniste-caring, et une dynamique de partenariat avec le patient et ses proches, dans une institution accueillante sur le plan organisationnel et environnemental. ¼ Partant de ces résultats, il semble important de limiter les contraintes organisationnelles pour consolider la dynamique humaniste-caring, de développer le partenariat patient et de porter une attention particulière aux proches des patients, qui se traduise par un accompagnement structuré.

Considerations for Designing and Implementing a Multi-institution Undergraduate Medical Education Experience.

Cancer Care Experience (CCE) is a unique elective educational program to further explore the subspecialty of oncology beyond the scope of the traditional undergraduate medical education curriculum. During the COVID-19 pandemic, CCE moved from an in-person to a virtual learning platform. This transition allowed program leaders to offer CCE as a multi-institutional program, with students participating from both Duke University School of Medicine and Penn State College of Medicine. Our study aimed to investigate the effectiveness of virtual learning, student perspectives on multi-institutional collaboration, and the program's impact on the student's understanding of oncology care and clerkship preparedness. Overall, students indicated CCE was an impactful program for them to learn more about oncology and that virtual learning was an effective learning platform. Furthermore, our results suggest students found the multi-institutional aspect valuable and that a multi-institution, hybrid (in-person and virtual) platform was preferred. Our study highlights the success of CCE as a multi-institution program and an effective elective program to expose students to the field of oncology further.

Experiences of Assyrian refugee women seeking care for chronic pain: a qualitative study.

BACKGROUND: Refugee women exhibit some of the highest rates of chronic pain yet the diversity and challenges of health care systems across countries pose numerous challenges for refugee women trying to access quality health care. OBJECTIVE: We sought to explore the experiences of Assyrian refugee women seeking care for chronic pain. METHODS: Semi-structured interviews (face-to-face and virtual) were undertaken with 10 Assyrian women of refugee background living in Melbourne, Australia. Audio recordings and field notes of interviews were collected and themes were identified using a phenomenological approach. Women were required to be conversant in English or Arabic and willing to use a translator if necessary. RESULTS: We identified five major themes of women's experiences accessing care for chronic pain: (1) the story of pain; (2) the experience of help seeking in Australia and home country; (3) factors shaping the ability to access appropriate care; (4) support seeking systems; and (5) influence of culture and gender roles. CONCLUSION: Exploring refugee women's experience of seeking care for chronic pain reinforces the need to explore hard to reach population's perspectives in research and helps to understand how vectors of disadvantage may intersect. For successful integration into health care systems of host countries, particularly for complex conditions such as chronic pain, there is a need to work with women community members to develop programs that are culturally aligned to enhance access pathways to care.

An exploratory cross-sectional study of the effects of ongoing relationships with accompanying patients on cancer care experience, self-efficacy, and psychological distress.

BACKGROUND: Centre hospitalier de l'Université de Montréal in Canada introduced accompanying patients (APs) into the breast cancer care trajectory. APs are patients who have been treated for breast cancer and have been integrated into the clinical team to expand the services offered to people affected by cancer. This study describes the profiles of the people who received the support and explores whether one-offs vs ongoing encounters with APs influence their experience of care, on self-efficacy in coping with cancer, and on their level of psychological distress. METHODS: An exploratory cross-sectional study was carried out among patients to compare patients who had one encounter with an AP (G1) with those who had had several encounters (G2). Five questionnaires were administered on socio-demographic characteristics, care pathway, evaluation of the support experience, self-efficacy in coping with cancer, and level of psychological distress. Logbooks, completed by the APs, determined the number of encounters. Linear regression models were used to evaluate the associations between the number of encounters, patient characteristics, care pathway, number of topics discussed, self-efficacy measures in coping with cancer, and level of psychological distress. RESULTS: Between April 2020 and December 2021, 60% of 535 patients who were offered support from an AP accepted. Of these, one hundred and twenty-four patients participated in the study. The study aimed to recruit a minimum of 70 patients with the expectation of obtaining at least 50 participants, assuming a response rate of 70%. There were no differences between G1 and G2 in terms of sociodemographic data and care pathways. Statistical differences were found between G1 and G2 for impacts on and the return to daily life (p = 0.000), the return to the work and impacts on professional life (p = 0.044), announcement of a diagnosis to family and friends (p = 0.033), and strategies for living with treatment under the best conditions (p = 0.000). Significant differences were found on the topics of cancer (p = 0.000), genetic testing (p = 0.023), therapeutic options (p = 0.000), fatigue following treatment (p = 0.005), pain and discomfort after treatment or surgery (p = 0.000), potential emotions and their management (p = 0.000) and the decision-making processes (p = 0.011). A significant relationship was found between the two groups for patients' ability to cope with cancer (p = 0.038), and their level of psychological distress at different stages of the care pathway (p = 0.024). CONCLUSIONS: This study shows differences between one-time and ongoing support for cancer patients. It highlights the potential for APs to help patients develop self-efficacy and cope with the challenges of cancer treatment.

A qualitative study to explore the healthcare-seeking experiences of men who have sex with men (MSM) and transgender women (TGW) in Rwanda.

BACKGROUND: Globally, men who have sex with men (MSM) and transgender women (TGW) encounter many challenging experiences when accessing health services compared to the general population. Stigma, discrimination, and punitive laws against same-sex relationships in some sub-Saharan African countries have made MSM and TGW more prone to depression, suicidal ideation, anxiety disorders, substance abuse, non-communicable diseases, and HIV. None of the prior studies in Rwanda on MSM and TGW had explored their lived experience in accessing health services. Accordingly, this study aimed at exploring the healthcare-seeking experiences of MSM and TGW in Rwanda. METHODS: This study utilized a qualitative research method employing a phenomenological design. Semi-structured in-depth interviews were conducted with 16 MSM and 12 TGW. Participants were recruited via purposive and snowball sampling approaches in five districts in Rwanda." RESULTS: Data were analyzed using a thematic analysis approach. Three main themes emerged from the study: (1) The healthcare experiences of MSM and TGW were generally dissatisfactory, (2) MSM and TGW hesitated to seek care unless they were severely ill, (3) MSM and TGW's perspectives on how to improve their health-seeking behavior. CONCLUSION: MSM and TGW in Rwanda continue to face negative experiences within the healthcare delivery settings. These experiences include mistreatment, refusal of care, stigma, and discrimination. Provision of services for MSM and TGW and On-the-job cultural competence training in the care of MSM and TGW patients is needed. Including the same training in the medical and health sciences curriculum is recommended. Furthermore, awareness and sensitization campaigns to improve the understanding of the existence of MSM and TGW and to foster acceptance of gender and sexual diversity in society are necessary.

Narrativas sobre la experiencia de cuidado en padres de hijos con discapacidad visual / Narratives about the experience of care in parents of children with visual impairment

El impacto generado por la discapacidad visual infantil se evidencia en las relaciones estableci-das por el niño con su entorno. El objetivo consistía en describir las narrativas sobre la expe-riencia de cuidado en padres de hijos con discapacidad visual para generar reflexiones en torno a los factores psicosociales asociados y el proceso de rehabilitación. Se implementó una meto-dología cualitativa de diseño narrativo. Como técnica para recolectar la información se utilizó la entrevista en profundidad. Los participantes son padres de hijos con discapacidad visual. Los hallazgos evidencian confusión asociada al diagnóstico, sobreprotección parental, modificacio-nes en el proyecto vital de los padres después del diagnóstico del niño, conflictos en la pareja parental y situaciones de exclusión social que enfrentan los niños. Se concluye que es impor-tante reflexionar sobre la implementación de nuevas alternativas para apoyar a los padres frente al proceso de adaptación al diagnóstico y la rehabilitación. (AU)

The impact generated by childhood visual impairment is evident in the relationships estab-lished by the child with his environment. The research objective was to describe the narra-tives about the experience of care in parents of children with visual impairment to generate reflections on the associated psychosocial factors and the rehabilitation process. For the above, a qualitative methodology of narrative design was implemented. As a technique to col-lect the information, the in-depth interview was obtained. The participants are parents of visually impaired children. The findings show confusion associated with the diagnosis, parental overprotection, modifications in the parents’ life project after the child’s diagnosis, conflicts in the parental couple, and situations of social exclusion that children face. It is concluded that it is important to reflect on the implementation of new alternatives to support parents in the process of adaptation to diagnosis and rehabilitation. (AU)