{"id":4306,"date":"2025-08-05T13:04:38","date_gmt":"2025-08-05T13:04:38","guid":{"rendered":"https:\/\/practicalhealthpsychology.com\/?p=4306"},"modified":"2026-04-09T07:47:21","modified_gmt":"2026-04-09T07:47:21","slug":"mylifetool-a-person-centred-holistic-approach-to-the-self-management-of-long-term-conditions","status":"publish","type":"post","link":"https:\/\/practicalhealthpsychology.com\/fr\/2025\/08\/mylifetool-a-person-centred-holistic-approach-to-the-self-management-of-long-term-conditions\/","title":{"rendered":"MyLifeTool: une approche holistique centr\u00e9e sur la personne pour l\u2019autogestion des affections de longue dur\u00e9e"},"content":{"rendered":"

\u00c9crit par Dr Stephanie K\u0131l\u0131n\u00e7, Teesside University, UK and Jo Cole, the Tees Valley, Durham and North Yorkshire Neurological Alliance, UK<\/span><\/p>\n

Traduit par\u00a0Natalija Plasonja et D\u00e9borah Loyal<\/span><\/p>\n

Les affections de longue dur\u00e9e (ALD) constituent une pr\u00e9occupation majeure pour les syst\u00e8mes de sant\u00e9 mondiaux, compte tenu de leur <\/span>pr\u00e9valence \u00e9lev\u00e9e<\/span><\/a> et de leur <\/span>fardeau, dont leur impact significatif sur l’esp\u00e9rance de vie corrig\u00e9e de l’incapacit\u00e9<\/span><\/a>. Elles ont \u00e9galement un <\/span>effet d\u00e9l\u00e9t\u00e8re significatif sur la qualit\u00e9 de vie li\u00e9e \u00e0 la sant\u00e9<\/span><\/a> et sont associ\u00e9es \u00e0 des <\/span>taux d’anxi\u00e9t\u00e9 et de d\u00e9pression plus \u00e9lev\u00e9s<\/span><\/a> qu\u2019en population g\u00e9n\u00e9rale.<\/span><\/p>\n

MyLifeTool<\/span><\/a> est un outil d’autogestion destin\u00e9 aux personnes atteintes d’ALD, quelle que soit leur affection (diab\u00e8te, scl\u00e9rose en plaques, douleur chronique, asthme, anxi\u00e9t\u00e9, troubles neurod\u00e9veloppementaux, l\u00e9sions c\u00e9r\u00e9brales acquises, fibromyalgie). Il a \u00e9t\u00e9 d\u00e9velopp\u00e9 en partenariat avec des personnes atteintes d’ALD, des membres de <\/span>Neuro Key<\/span><\/a> et des psychologues de l’Universit\u00e9 de Teesside. Il s’appuie sur notre <\/span>cadre th\u00e9orique de l\u2019autogestion<\/span><\/a>, une approche centr\u00e9e sur la personne et non educative. Les personnes atteintes d’ALD ont \u00e9t\u00e9 au c\u0153ur du projet, d\u00e9terminant le devenir de MyLifeTool et son nom.<\/span><\/p>\n

Notre approche de l’autogestion<\/b><\/p>\n

Les strat\u00e9gies d’autogestion dans le cadre\u00a0 des affections chroniques <\/span>se concentrent souvent sur les issues m\u00e9dicales et les strat\u00e9gies de prise en charge<\/span><\/a> et se pr\u00e9occupent surtout du changement comportemental, <\/span>n\u00e9gligeant le contexte social et relationnel<\/span><\/a>. L’autogestion dans les\u00a0 affections chroniques peut \u00eatre consid\u00e9r\u00e9e comme un <\/span>processus permanent et fluide<\/span><\/a>, susceptible d’\u00e9voluer en fonction des circonstances de vie et de la fluctuation des sympt\u00f4mes. Par cons\u00e9quent, il existe des initiatives encourageant le <\/span>passage d\u2019approches d’autogestion p\u00e9dagogiques<\/span><\/a> \u00e0 des approches qui permettent aux personnes d\u2019envisager et de d\u00e9velopper leurs propres ressources d’autogestion. Dans cette optique, nous consid\u00e9rons l’autogestion comme un cheminement vers <\/span>la recherche ou le maintien d’un sens et d’un but \u00e0 la vie<\/span><\/a>. Il s’agit d’un processus continu que chacun aborde selon sa propre perspective, en fonction de sa vie, de ses objectifs, de ses besoins et de l’\u00e9volution de sa maladie. Il est question \u00e9galement de la personne, et non du diagnostic. C’est pourquoi une grande partie de MyLifeTool invite les utilisateurs \u00e0 r\u00e9fl\u00e9chir aux strat\u00e9gies d’autogestion qui leur conviennent et \u00e0 celles qui ne leur conviennent pas.<\/span><\/p>\n

La structure de MyLifeTool<\/b><\/p>\n

MyLifeTool se compose de cinq livrets proposant diff\u00e9rentes activit\u00e9s de psychologie positive, encourageant les personnes \u00e0 explorer leurs forces. Des recherches ont montr\u00e9 que <\/span>vivre une vie remplie de sens est important pour les personnes souffrant de maladies chroniques<\/span><\/a> et <\/span>serait \u00e9galement associ\u00e9 \u00e0 une croissance personnelle et \u00e0 de meilleures issues de sant\u00e9<\/span><\/a>.<\/span><\/p>\n

Livret 1\u00a0: \u00ab\u00a0Moi et mon affection \u00bb <\/b>se concentre sur l\u2019identit\u00e9 et sur la fa\u00e7on de se voir sous un jour plus positif. Il s\u2019agit d\u2019\u00eatre plus bienveillant envers soi-m\u00eame et de reconna\u00eetre que l\u2019on n\u2019est pas d\u00e9fini par sa maladie. Ce livret propose des activit\u00e9s pour encourager les personnes \u00e0 r\u00e9fl\u00e9chir \u00e0 qui elles sont, \u00e0 leurs valeurs et \u00e0 ce qu\u2019elles attendent d\u2019elles-m\u00eames.<\/span><\/p>\n

Livret 2\u00a0: \u00ab\u00a0Accepter mon corps\u00a0\u00bb<\/b> explore des strat\u00e9gies de planification et de rythme souvent abord\u00e9es dans les programmes d\u2019autogestion. Les activit\u00e9s vous encouragent \u00e0 \u00e9couter votre corps, \u00e0 identifier les moments o\u00f9 vous d\u00e9passez vos capacit\u00e9s et \u00e0 r\u00e9fl\u00e9chir \u00e0 des moyens de g\u00e9rer votre \u00e9nergie.<\/span><\/p>\n

Livret 3\u00a0: \u00ab\u00a0Prendre les choses en main\u00a0\u00bb<\/b> vous apprend \u00e0 reconna\u00eetre vos points forts, \u00e0 d\u00e9velopper votre r\u00e9silience et \u00e0 tirer parti des bons jours. Il vous encourage \u00e0 \u00eatre plus actif dans la gestion de votre maladie en apprenant \u00e0 mieux la conna\u00eetre et \u00e0 l\u2019int\u00e9grer dans votre vie. Les activit\u00e9s incluent la d\u00e9finition d\u2019objectifs et la reconnaissance de vos points forts.<\/span><\/p>\n

Livret 4\u00a0: \u00ab\u00a0Se connecter aux autres\u00a0\u00bb<\/b> reconna\u00eet l\u2019importance de recevoir du soutien, ainsi que les bienfaits du soutien aux autres, car ces deux aspects peuvent donner du sens \u00e0 la vie. Les activit\u00e9s portent sur la mani\u00e8re de communiquer vos besoins, que ce soit aupr\u00e8s de votre famille, de vos amis, des professionnels de sant\u00e9 ou d\u2019autres intervenants.<\/span><\/p>\n

Livret 5\u00a0: \u00ab\u00a0Ce qui est important pour moi\u00a0\u00bb<\/b> examine ce qui donne un sens \u00e0 votre vie et comment vous pouvez trouver du temps pour vous. Chacun trouve un sens \u00e0 sa vie de diff\u00e9rentes mani\u00e8res\u00a0: en s’occupant, en ayant une raison de se lever le matin ou en se lan\u00e7ant des d\u00e9fis.<\/span><\/p>\n

Le carnet de r\u00e9flexion<\/b><\/p>\n

Pour favoriser la r\u00e9flexion, MyLifeTool propose un carnet de r\u00e9flexion\u00a0: un espace cr\u00e9atif permettant de r\u00e9fl\u00e9chir \u00e0 ses exp\u00e9riences, ses objectifs et ses r\u00e9ussites. Ouvert et non directif, il permet aux personnes d’utiliser diverses techniques cr\u00e9atives qui leur conviennent, ou de l’utiliser comme un journal intime si elles le pr\u00e9f\u00e8rent. <\/span>Ce type d’approche cr\u00e9ative<\/span><\/a> permet d’explorer ses exp\u00e9riences en d\u00e9tail et d’en saisir le sens de mani\u00e8re plus authentique.<\/span><\/p>\n

MyLifeTool est utilis\u00e9 par des associations et des professionnels de sant\u00e9 mentale bas\u00e9s au Royaume-Uni. Il est disponible gratuitement <\/span>en ligne<\/span><\/a>. Il s\u2019adresse aux personnes atteintes d’affections de longue dur\u00e9e afin qu’elles puissent l’utiliser elles-m\u00eames mais aussi aux professionnels, pour l’utiliser avec leurs patients.<\/span><\/p>\n

\u00c9valuation de MyLifeTool<\/b><\/p>\n

Les personnes ayant utilis\u00e9 MyLifeTool pendant 12\u00a0semaines<\/span><\/a> l’ont trouv\u00e9 b\u00e9n\u00e9fique pour leur capacit\u00e9s d\u2019autogestion, leur d\u00e9veloppement personnel et l\u2019acceptation de leur affection de longue dur\u00e9e. Les mesures de bien-\u00eatre prises avant et apr\u00e8s l’utilisation de l’outil montrent \u00e9galement des am\u00e9liorations en termes d’auto-efficacit\u00e9, d’autonomie et de capacit\u00e9 \u00e0 g\u00e9rer son temps.\u00a0<\/span><\/p>\n

Recommandations pratiques<\/b><\/p>\n

Consid\u00e9rer la personne dans sa globalit\u00e9, et non le diagnostic\u00a0:<\/b> Les affections de longue dur\u00e9e affectent tous les aspects de la vie. Nous pouvons aider les personnes \u00e0 r\u00e9fl\u00e9chir \u00e0 la place de la maladie dans leur vie, en tenant compte des changements potentiels de leur \u00e9tat, de leur situation, de leurs besoins et de leurs objectifs.<\/span><\/p>\n

L’autogestion est un processus continu\u00a0:<\/b> Une personne ne peut apprendre \u00e0 g\u00e9rer elle-m\u00eame sa ou ses maladies en suivant une formation de courte dur\u00e9e. Les affections de longue dur\u00e9e peuvent persister toute la vie et leurs sympt\u00f4mes et leurs impacts peuvent fluctuer. Encourager les personnes \u00e0 r\u00e9fl\u00e9chir \u00e0 leur autogestion peut les aider \u00e0 s’adapter aux changements de leur situation et de leur \u00e9tat \u00e0 long terme.<\/span><\/p>\n

Sens et finalit\u00e9\u00a0:<\/b> Aider les personnes atteintes d’affections de longue dur\u00e9e \u00e0 r\u00e9fl\u00e9chir et \u00e0 explorer ce qui donne un sens et un but \u00e0 leur vie.<\/span><\/p>\n

Se concentrer sur les points forts\u00a0:<\/b> Les personnes ayant utilis\u00e9 MyLifeTool ont appr\u00e9ci\u00e9 la fa\u00e7on dont il se concentre sur ce que les personnes atteintes d’affections de longue dur\u00e9e peuvent faire, plut\u00f4t que sur ce qu’elles ne peuvent pas faire.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

By\u00a0Dr Stephanie K\u0131l\u0131n\u00e7, Teesside University, UK and Jo Cole, the Tees Valley, Durham and North Yorkshire Neurological Alliance, UK\u00a0 Long-term conditions are a major concern for global health care systems given their high prevalence and disease burden, including their significant […]<\/p>\n","protected":false},"author":9,"featured_media":4309,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"off","_et_pb_old_content":"By\u00a0Dr Stephanie K\u0131l\u0131n\u00e7, Teesside University, UK and Jo Cole, the Tees Valley, Durham and North Yorkshire Neurological Alliance, UK\u00a0<\/strong>\n\nLong-term conditions are a major concern for global health care systems given their <\/span>high prevalence<\/span><\/a> and <\/span>disease burden, including their significant impact on disability-adjusted life years.<\/span><\/a>\u00a0 They also have a significant <\/span>negative impact on health-related quality of life<\/span><\/a> and are associated with <\/span>higher rates of anxiety and depression<\/span><\/a> than the general population.<\/span>\n\nMyLifeTool<\/span><\/a> is a self-management tool for people living with any long-term condition (e.g. diabetes, multiple sclerosis, chronic pain, asthma, anxiety, neurodevelopmental conditions, Acquired Brain Injury, Fibromyalgia).\u00a0 It was developed in partnership with people with long-term conditions, members of <\/span>Neuro Key<\/span><\/a> and psychologists from Teesside University.\u00a0 It is underpinned by our <\/span>self-management framework<\/span><\/a> which takes a person-centred, non-instructive perspective on self-management.\u00a0 People with long-term conditions were at the heart of the project, forging the decisions on what MyLifeTool would become and choosing the name.<\/span>\n\nOur approach to self-management<\/b>\n\nSelf-management strategies for long-term conditions often <\/span>focus on medical outcomes and management strategies<\/span><\/a> and are too concerned with behaviour change, <\/span>neglecting the social and relational context<\/span><\/a>.\u00a0 Alternatively, self-management of long-term conditions can be viewed as a <\/span>lifelong, fluid process<\/span><\/a> which can change depending on life circumstances and symptom fluctuation.\u00a0 As a result, there are proposals to <\/span>move from instructional self-management approaches<\/span><\/a> to ones which support people to consider and develop their own self-management resources. With this in mind, we view self-management is a journey towards <\/span>finding or maintaining meaning and purpose in life<\/span><\/a>.\u00a0 It is an ongoing process that people approach from their own perspective, to fit with their life, aims and needs and changes in their condition.\u00a0 It is also about the person, not the diagnosis.\u00a0 For this reason, a large part of MyLifeTool requires users to reflect upon which self-management strategies do and do not work for them.<\/span>\n\nHow MyLifeTool is structured<\/b>\n\nMyLifeTool comprises five booklets which contain different positive psychology activities, encouraging people to explore their strengths.\u00a0 Research has found that <\/span>living a purposeful life is important to people with long-term conditions<\/span><\/a> and is <\/span>associated with personal growth and better health outcomes<\/span><\/a>.\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/span>\n\nBook 1: \u201cMe and my condition\u201d,<\/b> focuses on identity and starting to see yourself in a more positive light.\u00a0 It is about being kinder to yourself and recognising that you are not defined by your condition.\u00a0 The booklet contains activities to encourage people to think about who they are, their values and what they expect from themselves.<\/span>\n\nBook 2<\/b>:<\/span> \u201cEmbracing my body\u201d, <\/b>explores planning and pacing strategies that you often see in self-management programmes.\u00a0 Activities encourage you to listen to your body, recognise when you have done too much and reflect upon ways to manage your energy levels.\u00a0<\/span>\n\nBook 3: \u201cTaking charge\u201d,<\/b> is about recognising your strengths, building resilience and making the most of the good days. It encourages you to be more active in your condition management by learning more about your condition and how it fits within your life.\u00a0 Activities include goal setting and recognising strengths.<\/span>\n\nBook 4: \u201cConnecting with others\u201d,<\/b> recognises the importance of receiving support, as well as the benefits of giving support to others, as both can enhance meaning and purpose in life.\u00a0 Activities explore how to communicate your needs to others, such as family and friends, but also medical practitioners and other professionals.<\/span>\n\nBook 5<\/b>: <\/span>\u201cWhat's important to me\u201d,<\/b> considers what gives you purpose in life and how you can find time for yourself.\u00a0 People find purpose in a variety of different ways: keeping busy; having a reason to get out of bed in the morning; challenging themselves.<\/span>\n\nThe Reflective Scrapbook<\/b>\n\nTo support reflection, MyLifeTool contains a scrapbook; a creative space that can help people to think about their experiences, aims and achievements.\u00a0 T<\/span>he scrapbook is open and non-directive, so people can use various creative activities techniques that suit them, or they can use the scrapbook as a diary if they prefer.\u00a0 <\/span>Creative approaches<\/span><\/a> like this can enable people to explore their experiences in detail and reflect upon their meaning in more authentic ways.<\/span>\u00a0<\/span>\n\nMyLifeTool is used by UK-based voluntary sector organisations and mental health practitioners. It <\/span>is available for free <\/span>online<\/span><\/a> for people with long-term conditions to use themselves or for practitioners to use with patients\/clients.<\/span>\n\nEvaluation of MyLifeTool<\/b>\n\nPeople who used MyLifeTool for 12 weeks<\/span><\/a> found it beneficial in supporting their self-management, personal growth and enhancing their acceptance of living with a long-term condition.\u00a0 Wellbeing measures taken before and after using the tool also show improvements in self-efficacy, empowerment and pacing ability.<\/span>\n\nPractical recommendations<\/b>\n\nSee the whole person, not the diagnosis<\/b>: Long-term conditions affect all aspects of a person\u2019s life.\u00a0 We can support people to reflect on how their condition fits into their lives, taking into consideration potential changes in their condition, life circumstances, needs and aims for the future.<\/span>\n\nSelf-management is ongoing<\/b>: A person cannot learn to self-manage their condition(s) by taking part in a short course.\u00a0 Long-term conditions are potentially life-long and symptoms and impact can fluctuate.\u00a0 Encouraging people to reflect on their self-management can support them to adapt to changes in their life circumstances and condition long term.<\/span>\n\nMeaning and purpose<\/b>: Support people with long-term conditions to reflect upon and explore what gives them meaning and purpose in life.<\/span>\n\nFocus on strengths<\/b>: People who have used MyLifeTool have valued the way it focuses on what people with long-term conditions can do, rather than what they can\u2019t 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