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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., (© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

To explore cancer patients' experience of pain and coping strategies as well as beliefs and representations associated with pain, pain management and treatments. 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. 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. The contextualization of pain through the particularities of cancer is critical in order to understand cancer patients' experience of pain. Not only patients' knowledge but also the meaning-making of pain should be incorporated in interventions targeting pain management. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

This study focuses on life experiences and social representations related to gender in the context of health among young French lay people aged from 18 to 21 years (N = 47). Qualitative analysis of the discursive content of nine focus groups illuminated the lay thinking underlying gender issues in the health context. Broadly speaking, group composition (i.e. unisex, mixed) had an impact on participants' discourse construction. Through their discourses, participants came to 'naturalise' the health issues and practices of each sex/gender through the biological specificities of men and women. In addition, discourse content underscores a differentiated 'imperative of health'. [ABSTRACT FROM AUTHOR]

The aim of our research is to highlight the role of social representations of the traumatic brain-injured person in the adjustments made by caregivers in building and maintaining quality of care. Twenty-three semi-structured interviews were conducted with nursing assistants and medico-psychological assistants, working in a long-term care facility. The interviews were the subject of a thematic content analysis. The analysis shows the role of representations of the traumatic brain-injured person in the way caregivers explain behaviours and situations and in the orientation of their professional practices. In explaining the inexplicable, caregivers establish a more human relationship through individualized care. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: After prenatal diagnosis of lethal fetal abnormality (LFA), some couples choose to continue the pregnancy rather than opt for termination of the pregnancy. This may result in the requirement for neonatal palliative care, which in France is prescribed by the Leonetti Law. These rare situations raise various questions about when and how palliative care is provided in cases of LFA. Objective: The main goal of the study was to clarify the place given to the concept of perinatal palliative care within the antenatal information provided by perinatal professionals. This work was specifically aimed at revealing caregivers' perceptions of and attitudes toward LFA, how it is managed, and procedures for decision making and providing information. Methods: This is a qualitative study using focus groups from two French Multidisciplinary Centers for Prenatal Diagnosis. All verbal production (individual statements, verbal exchanges, etc.) produced during the two focus groups was fully transcribed and the content analyzed. Results: Content analysis revealed four main themes: (1) defining LFA; (2) the source and nature of information about LFA and how it is communicated; (3) therapeutic options and decisions in the management of LFA; and (4) palliative care (limits and criteria) in the context of LFA. Conclusions: Consistency as regards the perceived intention of care among all members of the health care team is essential to support parents facing a possible fatal outcome. Attitudes and practices at Multidisciplinary Centers for Prenatal Diagnosis need to be shaped on a national basis. [ABSTRACT FROM AUTHOR]