Parents' experiences of parenting a child with profound intellectual and multiple disabilities in France: A qualitative study.

INTRODUCTION: Parents of persons with profound intellectual and multiple disabilities (PIMD) play a major and often lifelong role in the care and support of their child. A better understanding of parents' perspectives regarding their experiences of parenting their child with PIMD is essential to support them more effectively. Although this topic has been explored extensively in Anglo-Saxon and Northern European countries, little is known about the experience of these parents in a highly institutionalized context such as that in France. OBJECTIVE: We explored parents' experiences of the activities they performed to care for their child with PIMD (namely, the 'parenting work') in the French context. METHOD: Qualitative semistructured interviews were conducted by telephone with 34 parents of persons with PIMD aged 8-35. The resulting data were analyzed using thematic analysis. RESULTS: The analysis highlighted the diversity of activities performed by parents as well as the influence of context on the forms of this parenting work. Five themes were developed: (1) navigating the challenges of obtaining medical recognition; (2) negotiating a concealed domain and becoming an expert; (3) unfolding medical and medicosocial care management; (4) navigating the challenges of daily living and (5) shaping one's child's possibilities. CONCLUSION: This study offers a better understanding of the challenges, levers and expectations of parents of children with PIMD in France. Contextual factors such as the lack of knowledge of PIMD among health professionals, access to knowledge and know-how associated with care management, the administrative complexity of access to care and equipment, institutional issues (e.g., professional turnover) and societal ableism (e.g., access to infrastructures, interpersonal discrimination) shape the work parents perform to support their child's needs. It is necessary to consider contextual aspects to better support these parents and their children. Suggestions for applications are provided in the discussion. PATIENT OR PUBLIC CONTRIBUTION: One of the researchers, a parent of a child with PIMD, supported the research design and provided feedback on the study's procedures and manuscript.

"Fortunately I felt pain, or I would have thought I was on my way out": experiencing pain and negotiating analgesic treatment in the context of cancer.

OBJECTIVES: To explore cancer patients' experience of pain and coping strategies as well as beliefs and representations associated with pain, pain management and treatments. METHOD AND PARTICIPANTS: A qualitative study based on semi-structured interviews was conducted among 16 patients with cancer. The inductive research strategy adopted derived from the Grounded Theory approach and the data transcribed verbatim were gradually analyzed involving researcher triangulation. FINDINGS: The experience of pain and the coping strategies developed by patients to deal with it are shaped by the experience and representations of cancer associated with death and suffering. Pain acts both as an indication to the patients that they are still alive and as an indicator of the progression of the disease. Cancer also models patients' relationships to analgesic treatments and health care providers, since pain is an area in which patients can take back control of what is happening to them. Patients' expression of reluctance to accept analgesic treatments is also influenced by the significance of opioid treatments in this context, which are perceived as an indication that the end of life is close. CONCLUSIONS: The contextualization of pain through the particularities of cancer is critical in order to understand cancer patients' experience of pain. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: Not only patients' knowledge but also the meaning-making of pain should be incorporated in interventions targeting pain management.

Importance of temporality and context in relation to life habit restrictions among patients with systemic lupus erythematosus: A psychosocial qualitative study.

OBJECTIVE: Life habits (LH) encompass an individual's engagement in daily activities such as nutrition, fitness, personal care, communication, housing, and mobility, along with his/her social role (responsibility, interpersonal relationships, community life, education, employment, and recreation). This qualitative study explores the nature and context of LH restrictions in systemic lupus erythematosus (SLE) individuals across their SLE journey. METHODS: Narrative interviews were conducted with adult SLE patients. Interview transcripts were subjected to a thematic content analysis, using the Disability Creation Process model as a framework. RESULTS: Forty participants were interviewed. Three major themes were highlighted: (1) Temporality, capabilities, and environmental contexts: although all participants experienced LH restrictions at some point, the expression of these limitations depended on the individual's and SLE disease characteristics as well as on temporal (time of life and lupus course) and environmental (material, social, and societal) contexts. (2) Identity issues, illness stigma, and (fear of) discriminations: LH were discussed through the lens of participants' social roles and identities. While illness stigma can influence social relations, it is also expressed at a societal level. (3) Masking and minimizing strategies: due to illness stigma and fear of discrimination, participants developed strategies to manage their relationships, including masking and minimization. Their use was both advantageous and disadvantageous regarding LH. CONCLUSIONS: For individuals with SLE, LH restrictions must be considered as an ongoing process that takes place within specific contexts. Our findings provide many opportunities for interventions that can benefit patients and their families, as well as healthcare providers.

How doctors communicated with parents in a neonatal intensive care: Communication and ethical issues.

AIM: Doctors have a moral and legal obligation to keep patients and their families informed, and this is an integral part of care. We explored the communication strategies used by doctors when they spoke to parents in a French neonatal intensive care unit (NICU). METHODS: This was a single-centre qualitative pilot study carried out from October 2015 to January 2016. We asked five doctors (three female) to audiotape their discussions with the parents of newborn infants during their NICU stay. The doctors' mean age was 43 years, and they had a mean of 14 years of NICU experience. Each discussion was subjected to thematic content analysis. RESULTS: We analysed 40 discussions carried out between doctors on 26 newborn infants. Five communication strategy themes emerged: building understanding, how the communication was constructed, the role of the doctor, and of the parents, in the overall care of the newborn infant and how the information given to the parents developed over time. CONCLUSION: Analysing the content of the information discussed with parents provided us with the opportunity to understand the communication and ethical issues surrounding the delivery of information in a NICU. This could be used to improve future discussions between doctors and parents.

Recherche sur la fin de vie, la nécessité d'un consensus : premiers résultats.

During the past 15 years, in France, like in many European countries, the attention paid to patients at the end of their lives has continued to grow. But in the meantime, only a few researchers have managed to collect reliable data on End-of-Life Care and to implement scientific studies describing the reality of these situations. This difficulty is due in particular to the lack of a recognized and operational definition of the end of life.Our objective is to explore the possibility of achieving consensus around a definition based on the isolated elements in the literature.A Delphi consensus approach has been conducted. A “Delphi” approach allows consensus to be achieved without the influence of leadership effects.The population of this study is the group of care providers who are members of the Société Française d’Accompagnement et de Soins Palliatifs (SFAP), whether they are professionals or volunteers. An electronic survey asked for the degree of approval of individuals for each of the proposed definitions on a Lickert scale. The first round of Delphi was proposed at the end of 2019 among palliative care actors. 1463 people responded to this questionnaire in one month. Two types of definition seem to dominate the other proposals. The first is related to an estimate of life expectancy: life expectancy of less than 15 days and less than one month. The second emerging definition is related to the evolution of a pathology: based on the fact of being in advanced or terminal phase of an incurable pathology.These results confirm that the end-of-life period can be seen from two points of view, the first in relation to the time left to live and the other in relation of the terminal phase of the disease which calls for a less clearly defined time.These two definitions are based on different approaches, one temporal and the other disease-centered. An alternative definition emerges from this study and will be tested in the second round of Delphi.

Illness representations and quality of life in French patients suffering from lung cancer.

Numerous studies have shown the impact of lung cancer disease on patient quality of life (QoL), but no research has yet examined the impact of illness representations (IR) in the assessment of QoL in lung cancer. Our goal is to explore the role of IR as adeterminant of QoL for lung cancer patients. Data were collected from 162 French patients who completed aself-administered questionnaire including ageneric measure of QoL. It also contains aspecific measure of psychological distress, mental adjustment to cancer, and socio-demographic and medical data. Regression analysis revealed that consequences, treatment control, identity and understanding predicted QoL and the activity dimension of QoL. Perceived consequences and identity seemed to have adeleterious impact on QoL, while treatment control predicted abetter QoL, related to the level of psychological distress and education level. The results suggest the importance of considering IR as adeterminant of QoL. They corroborate earlier findings on the relationship between IR and QoL associated with other pathologies. Psychosocial variables appeared to have more impact on QoL than socio-demographic and clinical variables, which shows the importance of considering IR in order to improve the QoL of patients.

"I think it's a bit early for now": impact of psychological factors on drafting advance directives among cancer patients.

PURPOSE: Various studies have shown that the drafting of Advance Directives (ADs) is relatively uncommon. This study was performed to explore cancer patients' attitudes toward ADs, and their reasons for completing or not completing advance directive forms. METHODS: The research included interdependent steps designed to gradually collect patients' agreement and comments concerning their participation in an AD study. A thematic content analysis was performed on patients' comments. A total of 147 patients spontaneously agreed to participate before the presentation of the specific theme (AD) of the study. RESULTS: A large majority of the sample reported having no knowledge about ADs. Of the patients who initially agreed to participate, two-thirds declined after the presentation of the theme of the study. The reasons of patients who declined to participate related to avoidance of the issue of death, a focus on present time perspective, or an ambivalence between the AD proposal and recovery plans. CONCLUSIONS: This study provides further evidence of the difficulties for patients to express their willingness to engage in AD discussions or research. The extent of the psychological issues experienced by patients and the level of avoidance they expressed raise many questions about the ethical issues and the spread of ADs used in oncology settings.

Illness perceptions and adherence in bipolar disorder: An exploratory study.

BACKGROUND: According to the Self-Regulation Model, illness perceptions influence an individual's coping (such as the taking of treatment) and emotional response to their illness. Emerging research suggests that this model could be used to explore illness perceptions in mental health. The aim of this exploratory study is, firstly, to measure and describe illness perception in French patients with a bipolar diagnosis and, secondly, to explore associations between illness perceptions and adherence in this population. METHOD: Thirty-eight French patients with bipolar disorder completed the Illness Perception Questionnaire for Schizophrenia (except the identity dimension). We measured medication adherence with the Medication Adherence Rating Scale. RESULTS: Our results showed that patients with high perceptions concerning treatment control, low perceptions of negative emotions of their mental illness, low perception of consequences and high comprehension of their disorder had a better adherence. CONCLUSIONS: Illness perceptions can provide a framework for understanding adherence in bipolar disorder, and the findings could have important clinical and research implications.

Emotional Labour of Caregivers Confronted With Aggressive Brain-injured Patients.

BACKGROUND: Aggressive behaviours are common with people who have suffered brain injuries and induce difficult emotions among certified nursing assistants and medical-psychological assistants who take care of them. These caregivers carry out emotional labour whose content and strategies are little known. AIM: The study explores the emotional labour of certified nursing assistants and medical-psychological assistants faced with the aggressive behaviours of brain-injured patients. METHODS: Semi-structured interviews were conducted with 37 caregivers. Interviews were analysed via a thematic content analysis. RESULTS: The analysis shows that the emotional labour of caregivers varies in accordance with the state of "consciousness" or "non-consciousness" that they attribute to the brain-injured patient with regard to this aggressive behaviour. This is a deep acting strategy. Moreover, caregivers shut off their emotions in order not to transmit them to the patient. This surface acting has the first objective for the caregiver of maintaining control of the situation and a second objective of protecting the patient emotionally and therefore of being perceived as a "good" caregiver. Emotional labour also meets a need to preserve the professional self-image and professional status negatively affected in the interaction with the aggressive brain-injured patient. CONCLUSIONS: Our study specifies the different strategies of the emotional labour of caregivers and their circumstances of use when they are confronted with aggressive behaviour by brain-injured patients. Targeted support for this emotional labour, such as training and practical analysis, is essential for the development of care practices promoting a caring relationship.

Time perspective, socioeconomic status, and psychological distress in chronic pain patients.

Time perspective (TP) is a fundamental dimension of the psychological construction of time. It refers to a subjective experience and can be defined as the relationship that individuals and groups have with the present, past, and future. Studies have shown that it is interesting to take into account TP in the field of health, especially for the study of the psychological distress (PD) of individuals faced with aversive situations. We conducted a research, which aimed to explore the relationship between TP and PD in patients with chronic pain. A total of 264 first-time patients (72.3% women; mean age = 49 years) at CHU Timone (Marseille) pain center answered a questionnaire included TP, socioeconomic status, pain beliefs (PB), pain characteristics, and sociodemographic characteristics. Using hierarchical regression analyses adjusted to the characteristics of pain, sociodemographic characteristics, and PB, we can observe significant relationships between different components of TP, socioeconomic status, and PD. These results emphasize the importance of TP as psychosocial variable in the analysis of PD in patients with chronic pain. These results also lead us to point out the role of the socioeconomic status that predicts levels of PD.

Video Games, Internet and Social Networks: A Study among French School students / Pratiques des jeux vidéo, d'internet et des réseaux sociaux chez des collégiens français.

Aim : Screen-based media use is gradually becoming a public health issue, especially among young people.Method : A local descriptive observational study was conducted in 11 colleges of the Bouches-du-Rhône department. All middle high school students were asked to fill in a questionnaire comprising questions about their demographic characteristics, their screen-based media use (Internet, video games, social networks), any problematic use (video games and social networks), self-esteem and quality of life.Results : A total of 950 college students (mean age : 12.96 years) participated in the research. The results show a high level and a very diverse screen-based media use. Boys more frequently played video games and girls go more frequently used social networks. The levels of problematic use were relatively low for all middle high school students. The level of problematic video game use was significantly higher in boys, and the level of problematic social network use was higher in girls.Conclusion : Differences in the use of video games or social networks raise the general issue of gender differences in society. This study indicates the need for more specific preventive interventions for screen-based media use. The addictive "nature" of certain practices needs to be studied in more detail.

Determinants of favourable opinions about euthanasia in a sample of French physicians.

BACKGROUND: The question whether euthanasia should be legalised has led to substantial public debate in France. The objective of this study in a sample of French physicians was to establish the potential determinants of a favourable opinion about euthanasia in general and when faced with a specific situation as embodied in the Humbert affair. METHODS: The study was a cross-sectional survey investigating two different samples of medical doctors: (1) those specialised in palliative care and affiliated to the French Society for Patient Accompaniment and Palliative Care; (2) medical interns (medical doctors in training course) in a French medical university (Marseille). A questionnaire was sent (email) to each voluntary participant including sociodemographics, professional status, mention of believing in God, and opinion about euthanasia (the question was designed to assess the general opinion about euthanasia and the opinion about a specific case, the Vincent Humbert' case (a man who was rendered quadriplegic, blind, and mute after an accident and has requested euthanasia). RESULTS: A total of 413 physicians participated in the research (participation rate: 48.5%). Less than half of the population were favourable to euthanasia in general and almost two-thirds of the population were favourable to Vincent Humbert's request for euthanasia. Based on the multivariate analysis, individuals believing in God and being a medical intern were significant independent factors linked to having a favourable opinion about euthanasia in general and about the Vincent Humbert's request. DISCUSSION: There is still no study in France on the development of opinion about euthanasia and its impact. The issue goes beyond the strictly professional sphere and involves broader socio-political stakes. These stakes do not necessarily take into account medical practices and experiences or the desires of end-of-life patients. The professional upheaval that the future French legal framework will doubtlessly trigger will require further research. CONCLUSION: The professional upheaval that the future French legal framework will doubtlessly trigger will require further research.

Lack of assent to dental examination in children with intellectual disabilities: Dentists' practices in Europe and ethical issues.

AIM: (1) To determine the repartition of criteria which can be considered as marks of lack of assent by the child with intellectual disabilities from the dentist's point of view and whether that influences the decision to examine the patient or not. (2) To explain the decision of practitioners and determine the ethical implications of these practices. METHODS: An anonymous and structured questionnaire was distributed online using the scenario of a 9-year-old child with moderate cognitive impairment with eight different oppositional behaviours. The practitioners were asked about their perception of the patient's lack of assent and about their decision to perform the dental examination or not. RESULTS: The proportion of them who performed a dental examination despite the patient's refusal represented between 13% and 28.8% of the population of respondents. CONCLUSION: There was an ambivalence among the practitioners who carried out a dental consultation when children were uncooperative. They adopted a teleological point of view. It calls for us to reflect on the ethical principles of autonomy and beneficence.

Quality of life and time perspective in inflammatory bowel disease patients.

PURPOSE: Numerous studies have shown the impact of inflammatory bowel disease (IBD) on patient quality of life (QoL), but no research has yet examined the impact of time's experience in the assessment of QoL in IBD. Our goal is to explore the links between QoL and time perspective (TP) and the role of TP as a determinant of QoL. METHODS: Data were collected from 156 patients who completed a questionnaire comprising a generic measure (SF-12) and a specific measure (Inflammatory Bowel Disease Questionnaire) of QoL, a measure of TP (ZTPI) and a collection of socio-demographic and medical data. RESULTS: Correlational analyses illustrated the links between TP and QoL. Regression analyses revealed that records of Past-negative and Present-hedonistic perspectives predicted QoL. Past-negative time perspective seemed to have a deleterious impact, while a Present-hedonistic time perspective predicted a better QoL, and this was irrespective of the level of severity of the disease. CONCLUSIONS: These results suggest the importance of considering TP as a determinant of psychological QoL. They corroborate earlier findings on the relationship between TP and QoL associated with other pathologies. The past-negative register, which indicates rumination, tells us about the importance of considering the psychological experience of time in order to improve the QoL of patients.

Chapitre 6. Révisions des lois de bioéthique et recherche sur l'embryon humain : une analyse psychosociale des États Généraux de la Bioéthique.

Bioethics are widely used in the course of biomedical science’s evolution. It allows to question ethical aspects underlying the setting of new research and clinical intervention techniques. This ethical thinking reflects norms and values socially admitted and question the way new scientific information are integrated to individuals’ system of knowing. Human embryo research, subject to bioethics laws revisions, represents an almost prototypical object of these issues, both lay and scientific. This study aims to study these issues through the context of bioethics revision laws, from users’ comments on Estates-General of Bioethics website, using the social representations theorical frame. A thematic content analysis has been performed. Results shows that embryo status is a structural argument of the debate, and that the opinion on human embryo research results from a set of ethical concerns that come from socially anchored values, accounting for the way individuals define science, biotechnologies and research on the living, that we also find in the bioethics legislation.

Chapitre 6. Révisions des lois de bioéthique et recherche sur l'embryon humain : une analyse psychosociale des États Généraux de la Bioéthique.

Bioethics are widely used in the course of biomedical science’s evolution. It allows to question ethical aspects underlying the setting of new research and clinical intervention techniques. This ethical thinking reflects norms and values socially admitted and question the way new scientific information are integrated to individuals’ system of knowing. Human embryo research, subject to bioethics laws revisions, represents an almost prototypical object of these issues, both lay and scientific. This study aims to study these issues through the context of bioethics revision laws, from users’ comments on Estates-General of Bioethics website, using the social representations theorical frame. A thematic content analysis has been performed. Results shows that embryo status is a structural argument of the debate, and that the opinion on human embryo research results from a set of ethical concerns that come from socially anchored values, accounting for the way individuals define science, biotechnologies and research on the living, that we also find in the bioethics legislation.

[From the dream body to the real body, a clinical look at body image]. / Du corps rêvé au corps réel, un regard clinique porté sur l'image corporelle.

As the object of care in medical treatment, the body is apprehended and invested in by patients from the point of view of the subject. The social, cultural and historical background of the subjects shapes their relationship with their body and regulates the possible impact of its transformations. These elements are important to take into account in the identification of body image disturbances and access to dedicated care. The experience of carers in dealing with these "marked" bodies must also be taken into account.

Perception, Beliefs, and Attitudes Regarding Sedation Practices among Palliative Care Nurses and Physicians: A Qualitative Study.

Background: Palliative care teams face complex medical situations on a daily basis. These situations require joint reflection and decision making to propose appropriate patient care. Sometimes, sedation is one of the options to be considered. In addition to medical and technical criteria justifying the use of sedation, multiple psychosocial criteria impact the decision making of palliative care teams and guide, give sense to, and legitimize professional practices. Objective: The main goal of this study was to explore perceptions, experiences, and beliefs of palliative care teams about sedation practices in a legislative context (Claeys-Leonetti law, 2016; France), which authorizes continuous deep sedation (CDS) until death. Methods: This is a qualitative study using 28 semistructured interviews with physicians and nurses working in a palliative care team in France (PACA region). All verbal productions produced during interviews were fully transcribed and the contents analyzed. Findings: Content analysis revealed four themes: (1) sedation as a "good death," (2) emotional experiences of sedations, (3) the practice of CDS, and (4) the ambiguous relationship with the Claeys-Leonetti law. Conclusions: This qualitative study provides evidence of a form of "naturalization" of the practice of sedation. However, the Claeys-Leonetti law exacerbates differences of opinion between palliative caregivers on sedation and questions the interest of this law for society and palliative care practices. clinicalTrials.gov identifier: NCT04016038.

Relationship Between Illness Representations, Psychosocial Adjustment, and Treatment Outcomes in Mental Disorders: A Mini Review.

Understanding and improving the psychosocial adjustments (e.g., quality of life, depression) and treatment outcomes (e.g., adherence, beliefs about treatments) of people with mental disorders are major health issues. The self-regulation model (SRM) postulates that illness representations play a central role on adjustment and treatment of people with physical illnesses. Recently, the SRM has been used with people with mental disorders. However, the manifestations of somatic and psychiatric disorders can be very different. Therefore, the use of SRM in the field of mental health is very complex. This difficulty, as well as the growing interest for illness representations in the field of mental health, justifies the utility to conduct a review on this topic. The current review shows that illness representations are related to psychosocial adjustment and/or treatment outcomes for people with various mental disorders [e.g., psychotic disorders, mood disorder, posttraumatic stress disorder (PTSD), attention deficit hyperactivity disorder (ADHD)]. However, some limitations to the applicability of SRM to mental disorders have been highlighted. These limitations should be considered in future studies.

Inequalities in treatment planning for children with intellectual disabilities: A questionnaire study of dentists in Europe.

BACKGROUND: Children with intellectual disabilities experience major inequality in the field of oral health, including a higher number of extracted teeth. The literature explains this difference in terms of higher levels of dental disease but does not mention the possibility of inequality in the treatment options offered these children. AIM: The aim is to investigate whether the same treatment options are offered by practitioners to children with and without intellectual disability in equivalent clinical circumstances. DESIGN: A scenario involving a clinical dental situation was developed, with one varying parameter: the patient described was a child with or without cerebral palsy. RESULTS: One hundred and thirty-nine dental specialists from France and Europe were recruited. A large number of practitioners (68%) chose the same treatment for both patients, but 32% declared modifying the dental treatment planning in the case of the child with cerebral palsy. The most frequently chosen treatment for the scenario of irreversible pulpitis for the child without disability was conservative endodontic treatment (73%) whereas the most frequently chosen treatment for the child with intellectual disability was tooth extraction (54%). DISCUSSION: These results are discussed in terms of beneficence, fear of restorative failure, lack of guidelines, practitioner experience and the implications for equity in healthcare.