Meeting the needs of pregnant women in socially vulnerable situations: A phenomenological qualitative study.

Objective: Vulnerability relates to fragile physical, psychological, and socio-environmental circumstances. Pregnant women's social vulnerability can lead to disruptions in their medical follow-ups, prematurity, and increased infant mortality rates, such that their special needs must be considered. Yet, despite different governments' 'perinatality' plans, international literature suggests their care can be improved. Although quantitative studies regularly evaluate these plans, few studies have assessed vulnerable pregnant women's views. This study explores the needs and expectations of vulnerable women regarding their follow-ups during pregnancy and identified strategies to improve their circumstances. Methods: The study was a phenomenological qualitative study involving semi-structured interviews with women who gave birth in the past six months (December 2017 to June 2018) and who fulfilled at least one vulnerability criterion. The women were recruited by French midwives and general practitioners (GPs). Findings: Concerning these vulnerable pregnant women, three phenomenological categories emerged: 1) they need to be monitored by a single trusted contact; 2) they seek medical and social support adapted to their situations that addresses their needs; and 3) they expect kind and person-centred communication skills from professionals who provide them appropriate information. Conclusion: We identified various international recommendations to screen and care for vulnerable pregnant women, but still these women often experience numerous challenges. Finally, the implementation of recommendations for healthcare professionals based on women's real-life experiences could help optimise the identification of vulnerable pregnant women as well as their follow-up care.

General practitioners' representation of early-stage CKD is a barrier to adequate management and patient empowerment: a phenomenological study.

BACKGROUND: In high-income countries, chronic kidney disease (CKD) affects over 10% of the population. Identifying these patients early is a priority, especially as new treatments are available to reduce the risk of cardiovascular and renal morbidity. We aimed at understanding the management and care pathway of patients with early-to-moderate CKD defined as an estimated glomerular filtration rate (eGFR) ≥ 45 mL/min/1.73 m2 (CKD-EPI), by analyzing the experience of general practitioners in a region in France. METHODS: This qualitative semiopragmatic phenomenological study analyzed in-depth interviews held with a purposive sample (age, gender, training, type of practice, rural/urban context) of 24 general practitioners, with triangulation of research until data saturation. RESULTS: From diagnostic, etiological and prognostic viewpoints, the general practitioners enrolled in our study perceived CKD as a complex, poorly-defined clinical entity in asymptomatic and multimorbid patients. They distinguished it from a rare condition they considered as 'mainly renal'. The fact that they did not perceive early-stage CKD as a disease was a hindrance to patient care, which should protect the kidneys with a preventive approach. Indeed, general practitioners perceived CKD patient management as a pathway requiring a personalized, integrative model, common to all chronic diseases, without necessarily involving a nephrologist, at least in the early stages. CONCLUSIONS: This study shows how the general practitioners' representations influence their attitudes and interventions. Clarifying the concept of early-stage CKD by taking factors like age and etiology into account would facilitate personalized management of this heterogeneous, often multimorbid, population. Finally, organizational models to support patient empowerment in an integrative care pathway must be established and validated.

The central role of peers facilitators in the empowerment of breast cancer patients: a qualitative study.

BACKGROUND: In 2020, the number of new cancer cases was estimated at 20 490 862 worldwide up from 18.1 million in 2018 and 14.1 million in 2012. Since the 2000s, cancer treatments have significantly improved, allowing either a cure or control of the disease. Patients share their experience of the disease and use supportive care solutions through involvement in patient associations and online forums. All the associations were built on the principle of "peer support," which is based on mutual aid between people who suffer or have suffered from the same somatic or psychological illness or had the same life experience. This experiential knowledge can be explored to understand the role of peers and associations in the appropriation of their cancer. METHODS: A qualitative phenomenological study was undertaken through semi-structured interviews with 12 participants. Interviews were audio-recorded, transcribed verbatim, then analyzed by means of triangulation up to the point of theoretical saturation by a semio-pragmatic method. RESULTS: Four categories emerged: (1) "Transforms a painful experience into a positive one. It mobilizes the human values of sharing, love, and humility, which facilitates resilience"; (2) "The characteristics of the association, a non-medical place between people sharing a common destiny, resonates with patients' needs and improves their well-being"; (3) "The association transforms the patients' experiences by facilitating engagement that leads to a patient-expert (empowerment)"; and (4) "Understanding what is happening to them is soothing, reassuring, because patients' concerns need to be heard and their care understood". CONCLUSIONS: This study highlights patient associations can serve as the mediator of NPI and facilate the empowerment of breast cancer patients. PRACTICE IMPLICATIONS: Educating health professionals in initial and continuing education about non-pharmacological interventions will be a major issue. Teaching the patient-centred approach to health professionals is one of the priorities in initial and continuing medical education.

Integrating general practitioners into crisis management would accelerate the transition from victim to effective professional: Qualitative analyses of a terrorist attack and catastrophic flooding.

BACKGROUND: In 2018, Trèbes, 6,000 inhabitants with nine general practitioners (GPs) in southern France, experienced two tragedies; a terrorist attack in March, in which four people were killed, and a catastrophic flood in October, in which six people died and thousands more were affected. OBJECTIVES: We aimed to obtain a substantive theory for improving crisis management by understanding the personal and professional effects of the two successive disasters on GPs in the same village. METHODS: This qualitative study conducted complete interviews with eight GPs individually, with subsequent analyses involving the conceptualisation of categories based on grounded theory. RESULTS: The analysis revealed that GPs underwent a double status transition. First, doctors who experienced the same emotional shock as the population became victims; their usual professional relationship changed from empathy to sympathy. The helplessness they felt was amplified by the lack of demand from the state to participate in the first emergency measures; consequently, they lost their professional status. In a second phase, GPs regained their values and skills and acquired new ones, thus regaining their status as competent professionals. In this context, the participants proposed integrating a coordinated crisis management system and the systematic development of peer support. CONCLUSION: We obtained valuable information on the stages of trauma experienced by GPs, allowing a better understanding of the effects on personal/professional status. Thus, the inclusion of GPs in adaptive crisis management plans would limit the effects of traumatic dissociation while increasing their professional effectiveness.

The chronic disease Self-Management Programme: A phenomenological study for empowering vulnerable patients with chronic diseases included in the EFFICHRONIC project.

INTRODUCTION: The Chronic Disease Self-Management Programme (CDSMP) has resulted in improved health outcomes for patients. However, research has focused mainly on those with chronic conditions and has not extensively explored prevention programmes targeting individuals with specific vulnerability profiles. AIM: This study aimed to understand the effects of the CDSMP on the lived experience of vulnerable patients included in the EFFICHRONIC project in France, based on their needs and expectations before and after participation. METHODS: We conducted a qualitative phenomenological semio-pragmatic study based on 37 in-depth interviews with 20 patients (20 before/17 after CDSMP). RESULTS: By transforming existential dimensions (identity, relationship with others and bodily experience), chronic illness generates new needs in the vulnerable person. By resonating with the expectations and needs of participants, the CDSMP induces motivation and a sense of belonging to a community of peers. It has enabled the participants to become actors of their own health until empowerment. Although some limitations are reported, the programme has awakened a desire in the participants to take better care of their health and to develop personal skills with, for some, a desire to become involved in health education. CONCLUSION: Our phenomenological approach highlighted the resonance between the programme (its design and implementation) and the lived experience of patients, as an effective element of empowerment. This necessitates training the facilitators to elicit the lived experience of patients. Furthermore, as a patient-centred approach is required, the facilitators need to learn how to adapt the design of the programme to the singularity of the patient. PATIENT OR PUBLIC CONTRIBUTION: Patients provided the data that were collected through in-depth interviews, and their experiences before and after the programme were analysed.

Recommendations for risk management and better living with epilepsy. Phenomenological study of the experience of patients, relatives, and bereaved families.

OBJECTIVE: To understand the lived experience of people with epilepsy (PWE) and their relatives, the risks associated with epilepsy, the information received from healthcare professionals, and the reaction to this information. METHODS: Qualitative phenomenological study conducted between 2016 and 2018. Individual semi-directive in-depth interviews were performed based on a triangulation of sources in three study groups: PWE, relatives of PWE, and bereaved families. Interviews were analyzed continuously, using a semiopragmatic method until data saturation. RESULTS: Interviews with PWE (N = 16), relatives of PWE (N = 8), and bereaved families (N = 10) led to several observations: (i) The stigmatizing representations of epilepsy and its constraints lead to a feeling of abnormality which determines the behavior of patients and their relatives; (ii) The global uncertainty surrounding epilepsy is an obstacle to the delivery of clear and personalized information by professionals, and, consequently, to empowerment; (iii) The communication skills of the physician have an impact on the lived experiences of patients and relatives; (iv) Better knowledge on direct mortal epilepsy-related risk could influence the perception of danger to oneself, and help find a balance between overprotection and trivialization. The experience of the patients and relatives led them to formulate concrete recommendations: (i) for the general public: to run information campaigns in order to limit stigmatization; (ii) for caregivers: to provide personalized and detailed information without minimizing the risks, in order to enable patients to "live by setting these risks"; (iii) for patients: to have a trusted person who is informed and trained in seizure management, to join patient associations. CONCLUSION: Our study points out that stigma, uncertainty, and lack of clarity of information are all barriers to patient empowerment. In order to provide prompt and personalized information on how to live with epilepsy while managing the risks, physicians need to develop person-centered communication skills. Future research is also required for the development of tools to facilitate this communication.

General practitioners must acquire skills to communicate with child with Autism Spectrum Disorder to regain their values and role in the follow-up - phenomenological study.

OBJECTIVE: To understand the perceptions and attitudes of general practitioners (GPs) regarding children with an Autism Spectrum Disorder (ASD). DESIGN: Phenomenological qualitative study. SETTING: Three focus groups, clinical settings. SUBJECTS: French GPs. MAIN OUTCOME MEASURES: 22 GPs took part in the study divided among three focus groups. They were volunteers to participate. Data were transcribed verbatim and analysed using a grounded theory data analysis, completed with a semiopragmatic analysis. RESULTS: Representing autism as a strange disorder in the doctor-patient relationship, GPs perceive a loss of sensory contact with the child with ASD that prevents the usual professional relationship between doctor and patient. They disengage themselves from monitoring the subject, concentrating on supporting the family. According to them, their role was to refer the patient to a specialist in the case of clinical intuition, but they have several reasons to give themselves time, all the more so because once the diagnosis is made, they lose sight of the patient and their place in the care pathway. GPs expressed the need to acquire skills and strategies to communicate with the autistic child to recover their role and values. CONCLUSION: GPs are disconcerted by the idea of communicating with children with ASD, as it takes them out of their usual professional benchmarks. They need communication tools that enable them to regain their role and relational value of the patient-centred approach. Beyond this, the question of the 'ethics of care' of the patient with a joint attention disorder is raised.KEY POINTSGPs are disconcerted with the idea of communicating with children with ASD.GPs need communication tools that enable them to regain their role and relational value of the patient-centred approach.The question of the 'ethics of care' of the patient with a joint attention disorder is raised.

Impact of a transition education program on health-related quality of life in pediatric patients with congenital heart disease: study design for a randomised controlled trial.

BACKGROUND: Recent advances in the field of congenital heart disease (CHD) led to an improved prognosis of the patients and in consequence the growth of a new population: the grown up with congenital heart disease. Until recently, more than 50% of these patients were lost to follow up because of the lack of specialized structures. The critical moment is the transition between paediatric and adult unit. Therapeutic education is crucial to solve this issue by helping patients to become independent and responsible. The TRANSITION-CHD randomized trial aims to assess the impact of a transition education program on health-related quality of life (HRQoL) of adolescents and young adults with CHD. METHODS: Multicentre, randomised, controlled, parallel arm study in CHD patients aged from 13 to 25 years old. Patients will be randomised into 2 groups (education program vs. no intervention). The primary outcome is the change in self-reported HRQoL between baseline and 12-month follow-up. A total of 100 patients in each group is required to observe a significant increase of the overall HRQoL score of 7 ± 13.5 points (on 100) with a power of 80% and an alpha risk of 5%. The secondary outcomes are: clinical outcomes, cardiopulmonary exercise test parameters (peak VO2, VAT, VE/VCO2 slope), level of knowledge of the disease using the Leuven knowledge questionnaire for CHD, physical and psychological status. DISCUSSION: As the current research is opening on patient related outcomes, and as the level of proof in therapeutic education is still low, we sought to assess the efficacy of a therapeutic education program on HRQoL of CHD patients with a randomized trial. TRIAL REGISTRATION: This study was approved by the National Ethics Committee (South-Mediterranean IV 2016-A01681-50) and was registered on Clinicaltrials.gov (NCT03005626).

Pre-exposure prophylaxis makes it possible to better live one's sexuality and guide men who have sex with men towards a responsible approach to their health: a phenomenological qualitative study about primary motivations for PrEP.

BACKGROUND: Pre-exposure prophylaxis (PrEP) for HIV is instrumental in the prevention of HIV for HIV-uninfected persons, by drastically reducing the risk of acquisition in the case of high-risk exposures. Despite its demonstrated efficacy, it remained under-prescribed in France until 2018. The principal aim of this study was to understand the motivations of Men who have Sex with Men (MSM) who started using PrEP in Montpellier, France. METHODS: A phenomenological study was undertaken, using semi-structured interviews with twelve participants attending the University Hospital of Montpellier for PrEP. Interviews were analysed by means of triangulation up to the point of theoretical saturation, using a semio-pragmatic method. RESULTS: Fear of HIV infection, personalised regular follow-up, and the wish to take care of one's health were the primary motivational factors. PrEP allows for a better sexual life restoring a sense of freedom despite the risks of STI, deemed manageable by PrEPers. PrEP does not modify long-term risk-taking behaviours but helps them better live their own sexuality and guides them towards a responsible approach to sexuality. Unclear information on PrEP, delivered by their family doctor, public campaigns or the media, leads to misrepresentations or negative social representation, including within the MSM community, which may delay its implementation. CONCLUSIONS: Fear of HIV infection and the benefits of regular medical follow-up to take care of one's health were motivational factors of importance for the use of PrEP by MSM in this study. PrEP transforms all existential dimensions of their lived experience, improving sexual identity and happiness. There is a need to improve professional awareness of the effectiveness of PrEP and to develop a patient centered approach, to disseminate information more widely to the general public and among MSM to reduce stigmatisation.

A phenomenological study of nurses experience about their palliative approach and their use of mobile palliative care teams in medical and surgical care units in France.

BACKGROUND: Despite a broad consensus and recommendations, numerous international reports or studies have shown the difficulties of implementing palliative care within healthcare services. The objective of this study was to understand the palliative approach of registered nurses in hospital medical and surgical care units and their use of mobile palliative care teams. METHODS: Qualitative study using individual in depth semi-structured interviews and focus group of registered nurses. Data were analyzed using a semiopragmatic phenomenological analysis. Expert nurses of mobile palliative care team carried out this study. 20 registered nurses from three different hospitals in France agreed to participate. RESULTS: Nurses recognize their role as being witnesses to the patient's experience through their constant presence. This is in line with their professional values and gives them an "alert role" that can anticipate a patient-centered palliative approach. The physician's positioning on palliative care plays a key role in its implementation. The lack of recognition of the individual role of the nurse leads to a questioning of her/his professional values, causing inappropriate behavior and distress. According to nurses, "rethinking care within a team environment" allows for the anticipation of a patient-centered palliative approach. Mobile Palliative Care Team highlights the major role of physicians-nurses "balance" while providing personal and professional support. CONCLUSIONS: The Physician's positioning and attitude toward palliative approach sets the tone for its early implementation and determines the behavior of different staff members within healthcare service. "Recognition at work", specifically "recognition of the individual role of nurse" is an essential concept for understanding what causes the delay in the implementation of a palliative approach. Interprofessional training (physicians and nurses) could optimize sharing expertise. Registered nurses consider MPCT as a "facilitating intermediary" within the healthcare service improving communication. Restoring a balance in sharing care and decision between physicians and other caregivers lead care teams to an anticipated and patient-centered palliative approach according to guidelines.

[Understanding lower gynaecological cancer consultation delay and help-seeking behavior in patients over 65]. / Compréhension du délai de consultation pour les cancers gynécologiques bas chez les patientes âgées de plus de 65 ans.

INTRODUCTION: Delays for consultation of more than six months exist for uterine cancer. Delays in diagnosis of more than five years exist for vulvar cancer. The peak incidence of these neoplasms appear after the age of 65 years. Patient's symptoms are characteristically swelling, vaginal bleeding or itching. This study aims to understand what is happening during this period for women over 65 years old. It also tries to identify triggers during the help-seeking period. METHODS: Qualitative studies using semi-structured interviews with dual analyses (semio-pragmatic and psychodynamic) have been conducted on a population of older (65+) gynaecologic cancer patients, recruited from a French oncology centre. RESULTS: Twelve patients were interviewed. Patients' courses of action were determined by the characteristics of their symptoms, their feelings and their emotions. Representations, subjective beliefs and past experiences were employed to make sense of their symptoms. The patient's friend and family circle had an important role in incentivizing the patient to seek consultation. Multiple factors affected the path towards consulting the doctor. The initial medical contact included several challenges. The patient would consult a doctor earlier if he had more information about his illness and if his relationship with the doctor was better. CONCLUSION: Our findings are similar to those of other cancers. The peculiarity for this population appears to be the different representations of age-related changes in the reproductive system, and the taboo associated with this issue when facing friends and family.

Patient-centeredness to anticipate and organize an end-of-life project for patients receiving at-home palliative care: a phenomenological study.

BACKGROUND: The development of end-of-life primary care is a socio-medical and ethical challenge. However, general practitioners (GPs) face many difficulties when initiating appropriate discussion on proactive shared palliative care. Anticipating palliative care is increasingly important given the ageing population and is an aim shared by many countries. We aimed to examine how French GPs approached and provided at-home palliative care. We inquired about their strategy for delivering care, and the skills and resources they used to devise new care strategies. METHODS: Twenty-one GPs from the South of France recruited by phone according to their various experiences of palliative care agreed to participate. Semi-structured interview transcripts were examined using a phenomenological approach inspired by Grounded theory, and further studied with semiopragmatic analysis. RESULTS: Offering palliative care was perceived by GPs as a moral obligation. They felt vindicated in a process rooted in the paradigm values of their profession. This study results in two key findings: firstly, their patient-centred approach facilitated the anticipatory discussions of any potential event or intervention, which the GPs openly discussed with patients and their relatives; secondly, this approach contributed to build an "end-of-life project" meeting patients' wishes and needs. The GPs all shared the idea that the end-of-life process required human presence and recommended that at-home care be coordinated and shared by multi-professional referring teams. CONCLUSIONS: The main tenets of palliative care as provided by GPs are a patient-centred approach in the anticipatory discussion of potential events, personalized follow-up with referring multi-professional teams, and the collaborative design of an end-of-life project meeting the aspirations of the patient and his or her family. Consequently, coordination strategies involving specialized teams, GPs and families should be modelled according to the specificities of each care system.

[Primary care pain management in the elderly population: The opening to non-pharmacological interventions. Qualitative study focused on GP experiences]. / Prise en charge de la douleur des personnes âgées en soins primaires : l'ouverture vers les interventions non médicamenteuses. Analyse qualitative de l'expérience des médecins généralistes.

OBJECTIVES: First of all, understand the management of pain in the elderly population through GP experiences and, secondly, explore their implication to the benefit of well aging. METHOD: Qualitative study with data collection combining 2 focus groups and 5 in depth interviews centered on the lived experience of 16 GPs in the Languedoc-Roussillon region in southern France. A semiopragmatic phenomenological analysis of the fully transcribed verbatim interviews was used to establish the significant categories in relation with our objectives. RESULTS: The GPs feel that the pain management still needs improvement even though it has become one of their priorities. GPs often notice iatrogenic effects in the care taking process of multiple pathologies which make them choose for the use of non-pharmacological interventions. The complex nature of pain, which has multiple significations for the elderly population, needs an overall approach by the GPs. They feel that it's their job to manage this because of the proximity and knowledge of the patient and his weaknesses. For them, aging well is a patient experience, they are only a support in this process. DISCUSSION: GPs think that they are expert in the complex process of pain management. This process has to be seen in a multidimensional approach of an older person with multiple pathologies. Therefore, they make use of non-pharmacological interventions. CONCLUSION: These interventions need to be developed to improve the quality of life in the elderly population.

[Not Available]. / Comprendre la décision vaccinale des parents pour mieux accompagner leurs choix: étude qualitative phénoménologique auprès des parents français.

OBJECTIVE: To understand parents' representations based on their own lived experiences and their influence on the decision to vaccinate their children. METHODS: This was a qualitative, in-depth, phenomenological study using semi-structured interviews with 14 volunteer parents who have children age-eligible for vaccination. The participants were recruited through family doctors in the Montpellier region (France). The methodology is modeled on grounded theory. The data, collected by audio recording, were analyzed using a semio-pragmatic method that brought forth conceptual categories giving meaning to the phenomenon being studied. RESULTS: Parents are unaware of the diseases for which there are vaccines and express a need for information. A perception of the inequality of the individual in face of the disease and the vaccine greatly influences the parents' vaccination decision. It induces in them a reasoned "sifting" of vaccines and leads them to strike a risk/benefit balance. They trust more in their doctor and their personal experience than in publicized information. CONCLUSION: Parents' lack of awareness of diseases, even those for which immunization exists, would suggest a need to better inform parents on this matter. Their perception of the inequality of the individual (their child) in face of the disease and the vaccine is the main determinant in their decision to vaccinate. Parents approach immunization in a thoughtful educated way, influenced by such factors as lifestyle, personal experiences and confidence in their doctor. These results make them very "critical" with regard to basic vaccination recommendations.

[Relevance of prison placements based on the perception of primary care medicine interns]. / Pertinence du stage en milieu pénitentiaire a partir du vécu des internes de médecine générale.

INTRODUCTION: The growing need for new placement opportunities for primary care interns has opened the way to placements in prison health centres. No study has previously assessed the educational value of this type of placement and its relevance to primary care for the general population. METHODS: A qualitative pilot study was conducted in the Languedoc-Roussillon region of France by means of semistructured interviews and phenomenological and practical analysis based on all primary care interns completing a prison health centre placement in the region. ANALYSIS AND RESULTS: The key dimensions emerging from the analysis are: exposure to a range of situations that are very similar to primary care in a public health context; learning how to manage complex situations; stronger orientation towards ethical health care; firmer belief in multidisciplinary teams; and enhanced awareness of the social role of primary care physicians. DISCUSSION: All interns considered this type of placement (towards the end of their training) to be a good preparation for their future primary care role, especially in the context of multidisciplinary practices.

[Determinants of support for dementia patients in general practice: a qualitative approach based on an epidemiological cohort]. / Déterminants de la prise en charge des patients déments dépistés dans une cohorte populationnelle : approche qualitative auprès de leurs médecins généralistes.

BACKGROUND: the analysis of access to diagnosis and care pathway for dementia patients shows that the disease is not considered as a priority for the general practitioner (GP). Different studies have point out under diagnosis of dementia. PURPOSE: the purpose of this qualitative study was to document the determinants of the diagnosis and management of dementia by GP. METHODS: recruitment of GPs (n = 12) was made from incident cases of dementia who were identified during the follow-up of subject enrolled in the 3 Cities cohort study. A semi-structured interview was conducted with an interview guide focused on the experience of the doctors. A phenomenological and pragmatic analysis, taking into account all the linguistic and extra linguistic evidence contained in the transcript was conducted. RESULTS: several emerging categories have been described: the doctors believe that the management of Alzheimer's disease is a public health problem and not an individual, the positioning of the GP in the care system is central. Determinants that influence the management are the identity of the physician, the impression of a fuzzy nosology, the finding of a therapeutic ineffectiveness, the priority given to severe co-morbidities and the workload of the general practitioner. However, the ordering of these categories according to the pragmatic phenomenological approach showed that the identity of the doctor, professional and personal, is at the origin of behavioral variability in their medical care. CONCLUSION: in a context of increased workload, the GP favors the assumption of comorbidities in the elderly given fuzzy nosology of dementia and uncertainty about the therapeutic efficacy. The phenomenological approach allows understanding that the human identity of the doctor, personal and professional identity, is the major factor that influence its care attitude for demented patients.