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Fragility among people with an advanced mental disability (PHA): interest and contribution of the personas method

Abstract

National audience. Recent studies have shown that people with mental disabilities need more access to care than the rest of the population but have more difficulties in achieving this (DREES, 2011; WHO, 2011; Lprosal, 2015). This population is marginalised in access to care (Jacob, 2013). As a result, she is in a poorer state of health: morbidity and mortality rates higher than in the rest of the population (Prince -al, 2007). These difficulties in accessing care make this population fragile in their support. This fragility is exacerbated for people with mental disabilities who are older (PHA). Indeed, they are particularly exposed to risks of violence, including moral violence (Peckham -al, 2006) and have difficulties in understanding the medical discourse. It is also worth adding to this the significant increase in their life expectancy and its impact on their fragility (Gabbai, 1991). Thus, in addition to being a population with a fragile cognitive profile, elements of the external environment are intensifying this state. Finally, the lack of health professionals’ knowledge of this population is a real obstacle to their access to care (Popplewell, 2014; Graham -al, 2008; Mudrick -al, 2012, Merten -al, 2015; Carrillo, 2011). This lack of knowledge contributes to their vulnerability. Therefore, this population is in a very fragile situation of par:1.la not being aware of their profile by health professionals 2.The lack of adaptation of their companies. the difficulty of access to care. To address these issues, the personas method can be relevant and appropriate. A persona is ‘an aid in the representation of knowledge about future users. He refers to what is going or may happen [...] and organises the various constraints (material, technical, human, etc.)’ (Bornet, 2013). This method allows the creation of fictitious user profiles based on observational or discursive data obtained from the target population. In particular, it is effective in the upstream phases in helping designers to formalise the first user needs (Maquire de la Maquire, 2002; Nielsen, 2014). In order to set up these personas, two questionnaires were circulated in 2016 on two different targets: the disability sector (ESAT, FAM, MAS, etc.) and the age advancement sector (EHPAD). Secondly, interviews with health professionals working in both sectors were carried out. The aim was to obtain statistical, observational and discursive data to identify the profiles of the actors involved. There were 78 respondents to the questionnaires: 45 professionals working in EHPAD, 33 working in other establishments (ESAT, FAM, MAS, etc.). 23 interviews were conducted with 11 different types of professionals. All of these data made it possible to propose 3 categories of personas (for a total of 17 designed personas): • PHA: 4 personas were developed (two men and two women)• Families: 2 personas have been developed (a pensioner’s couple living at home with their mentally disabled child and a dame living in EHPAD, whose daughter lives in an occupational household)• Healthcare professionals: 11 personas have been developed according to the type of profession (logistics service officer, carer’s assistant, moderator, head of service, school manager, specialist educator, occupational therapist, nurse, coordinating doctor, instructor and psychologist) The PHA personas should make it possible to: 1.Improve knowledge of the cognitive profile of this population2.A better understanding of their need for support and monitoring 3.More assessment of their state of fragilityThe personas of family carers should make it possible to: 1.Increased knowledge of the living situation of familiar careers2.More knowledge of their besoin3.Better assessment of the fragility of carers The personas of professional carers should make it possible to: 1.A better understanding of the knowledge gaps in PHA2.Improve training to enable them to acquire the necessary knowledge in relation to this population3.Develop methods for assessing the fragility of PHA.Finally, the state of fragility of the PHA population is due to a number of factors: 1.The lack of knowledge of this profile by health professionals 2.Unadaptable companies3.difficulties and marginalisation in access to care despite a high need. The data collected through questionnaires and interviews made it possible to set up a set of personas representing the various actors: carers (professional and family) and PHA. The use of these personas will raise awareness, understand and act on all the factors that make up the state of fragility of a PHA in order to improve support and access to care.

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