Health care management adequacy among French persons with severe profound intellectual and multiple disabilities: a longitudinal study.

BACKGROUND: The care organization of persons with profound intellectual and multiple disabilities (PIMD) varies by country according to the health care system. This study used a large sample of French individuals with severe PIMD/polyhandicap to assess: 1) the adequacy of care setting over a 5-year period and 2) health care consumption. METHODS: The longitudinal study used data from the French EVALuation PoLyHandicap (EVAL-PLH) cohort of persons with severe PIMD/polyhandicap who were receiving managed in specialized care centres and residential facilities. Two assessments were performed: wave 1 (T1) in 2015-2016 and wave 2 (T2) in 2020-2021. The inclusion criteria were as follows: age > 3 years at the time of inclusion; age at onset of cerebral lesion younger than 3 years old; and severe PIMD. The adequacy of the care setting was based on the following: i) objective indicators, i.e., adequacy for age and adequacy for health status severity; ii) subjective indicators, i.e., self-perception of the referring physician about medical care adequacy and educational care adequacy. Health care consumption was assessed based on medical and paramedical care. RESULTS: Among the 492 persons assessed at the 2 times, 50% of individuals at T1 and 46% of individuals at T2 were in an inadequate care setting based on age and severity. Regarding global subjective inadequacy, the combination of medical adequacy and educational adequacy, 7% of individuals at T1 and 13% of individuals at T2 were in an inadequate care setting. At T2, a majority of individuals were undermonitored by medical care providers (general practitioners, physical medicine rehabilitation physicians, neurologists, orthopaedists, etc.). Important gaps were found between performed and prescribed sessions of various paramedical care (physiotherapy, occupational therapy, psychomotor therapy, etc.). CONCLUSIONS: This study revealed key elements of inadequate care management for persons with severe PIMD/polyhandicap in France. Based on these important findings, healthcare workers, familial caregivers, patients experts, and health decision-makers should develop appropriate care organizations to optimize the global care management of these individuals. TRIAL REGISTRATION: NCT02400528, registered 27/03/2015.

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.

Adaptation and Implementation of Pictorial Conversation Aids for Early-Stage Breast Cancer Surgery and Reconstruction: A Quality Improvement Study.

Purpose: After a diagnosis of early-stage breast cancer, women of lower socioeconomic position (SEP) report worse outcomes than women of higher SEP. A pictorial conversation aid was shown to improve decision outcomes in controlled contexts. No such intervention existed in France. In Phase 1, our aim was to adapt, for use in France, two pictorial conversation aids for breast cancer surgery and reconstruction. In Phase 2, our aim was to implement them in a regional cancer center serving a diverse population. Patients and Methods: In phase 1, we used iterative qualitative methods to adapt the conversation aids with a convenience sample of patients and health professionals. In phase 2, we tested their implementation using PDSA cycles with volunteer surgeons. Results: In phase 1, we interviewed 10 health professionals and 5 patients to reach thematic data saturation. They found the conversation aids usable and very acceptable (especially patients) and suggested small changes to further simplify the layout and content (including a glossary). In phase 2, three surgeons started the first PDSA cycle, for 4 weeks. Only one additional surgeon agreed to take part in the second cycle. The third cycle was cancelled since no new surgeon agreed to take part. Time was a barrier for 2 out of 4 surgeons, potentially explaining the difficulty recruiting for the third cycle. The evaluation was otherwise positive. The surgeons found the conversation aids very useful during their consultations and all intended to continue using them in the future. Conclusion: It was possible to adapt, for use in France, pictorial conversation aids proven to be effective elsewhere. While the adapted conversation aids were deemed usable by health professionals and very acceptable to patients, their implementation using PDSA cycles proved slow.

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.

The French EVAL-PLH cohort of persons with polyhandicap.

Polyhandicap is characterized by a combination of profound intellectual disability and serious motor deficit, resulting in the extreme restriction of autonomy and communication. The aim of the EVAL-PLH (EVALuation PoLyHandicap) study is to identify the impact of socioeconomic, environmental, and epidemiological determinants on the health status of the persons with polyhandicap and the daily lives of their caregivers. EVAL-PLH is a prospective cohort study. The study involved persons with severe polyhandicap (who were cared for at reeducation centers, residential facilities, and one specialized pediatric/neurological department of a university hospital), their familial caregivers and the institutional caregivers. Data collection included sociodemographics, heath status, and psychocomportemental information. Data have been collected at 2 points (2015-2016 and 2020-2021). The French EVAL-PLH cohort is the first cohort study focusing on persons with polyhandicap, their families, and the health care workers caring for them. The sustainability of the device is essential to assist patients, families, clinicians, and health decision-making authorities in the optimization of care management.

Lived experience and perceived advantages of therapeutic De-escalation: A qualitative study of older patients with breast cancer.

INTRODUCTION: One option for therapeutic de-escalation in older women with early breast cancer (EBC) is partial breast irradiation (PBI) instead of whole-breast irradiation (WBI) when the latter has no clear advantages. We aimed to explore the decision-making processes and the lived experiences of WBI and PBI from the perspectives of older women with EBC. MATERIALS AND METHODS: Thematic content analysis was performed on qualitative data collected using narrative interviews. RESULTS: Twenty-two women aged 65 and over participated (ten patients who underwent WBI and twelve who underwent PBI). We identified three themes from their narratives: 1) Acceptance of a paternalistic relationship with physicians, 2) Strong need for an informed choice, and 3) PBI can help people conceal cancer-related physical marks. Narratives underlined participants' preferences for each of the two treatments and their perceptions about therapeutic de-escalation. Misconceptions about therapeutic de-escalation were observed. DISCUSSION: When providing information about EBC treatment options, patients' perceived burden of side effects should be considered. Moreover, eliciting the value older patients place on available breast cancer treatments, as well as their related goals and preferences, could foster their participation in the therapeutic de-escalation decision-making process.

'Similar but different': Social representations of health according to gender for French youth.

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'.

The study of social representations in children and adolescents: Lessons from a review of the literature / O estudo das representações sociais entre crianças e adolescentes: Lições de uma revisão de literatura / El estudio de las representaciones sociales de niños y adolescentes: Enseñanzas de una revista de literatura

An ad hoc review of the existing literature concerning the study of social representations (SRs; Moscovici, 1961/1976) in children and adolescents was conducted in order to put forward theoretical and methodological proposals on the study and development of SRs, and to highlight future directions. The review was performed using the PsycINFO database (up to September 2016), and included 60 eligible works. While the main part of the work sample does not mention theoretical and/or methodological implications (41.7%), other contributions highlight the necessity to take into account: (a) the active role of children/adolescents as well as their social interactions in the creation of SRs, (b) the relevance of studying SRs in these populations for developing the theory of SRs, (c) the expression of SRs in children's everyday actions, (d) the use of suitable methods for children/adolescents, and (e) the link between the psychology of development and the theory of SRs.

Foi realizada uma revisão da literatura existente sobre o estudo das representações sociais (RSs; Moscovici, 1961/1976) em crianças e adolescentes com a finalidade de apresentar propostas teóricas e metodológicas para o estudo do desenvolvimento das RSs, e de apontar futuras direções. Realizada a partir da base de dados PsycINFO (até setembro 2016) esta revisão incluiu 60 trabalhos. Enquanto a maior parte dos trabalhos analisados não menciona as suas implicações teóricas e/ou metodológicas (41,7%), outras contribuições salientam a necessidade de se considerar: (a) o papel ativo das crianças/adolescentes, assim como as suas interações sociais na elaboração de RSs; (b) a relevância de se estudar as RSs destas populações para o desenvolvimento da teoria das RSs; (c) a expressão das RSs nas ações cotidianas de crianças; (d) o uso de métodos adaptados à população de crianças/adolescentes e (e) a relação entre a psicologia do desenvolvimento e a teoria das RSs.

Una revista ad hoc de la literatura sobre el estudio de las representaciones sociales (RS; Moscovici, 1961/1976) de los niños y adolescentes ha sido realizada para profundizar las proposiciones teóricas y metodológicas de los estudios del desarrollo de las RSs, y para favorecer futuras orientaciones. Apoyándose en la plataforma PsycINFO (hasta septiembre de 2016), esta revista cuenta 60 investigaciones elegibles. La mayor parte de esos trabajos no evocan las consecuencias teóricas y/o metodológicas (41,7%). Pero otras contribuciones subrayan la necesidad de tomar en cuenta: (a) el papel activo de los niños/adolescentes, tanto como sus interacciones sociales, en la elaboración de la RSs, (b) la relevancia de estudiar las RSs de esas poblaciones para desarrollar la teoría de las RSs, (c) la expresión de las RSs en las acciones cotidianas de los niños, (d) el uso de metodologías adecuadas para niños/adolescentes, y (e) el vínculo entre la psicología del desarrollo y la teoría de las RSs.