Door Dr. Stephanie K\u0131l\u0131n\u00e7, Teesside University, Verenigd Koninkrijk en Jo Cole, de Tees Valley, Durham en North Yorkshire Neurological Alliance, Verenigd Koninkrijk<\/b><\/p>\n
Chronische aandoeningen vormen een grote uitdaging voor de wereldwijde gezondheidszorg vanwege hun <\/span>hoge prevalentie<\/span><\/a> en <\/span>ziektelast, waaronder de aanzienlijke impact op het aantal jaren<\/span><\/a> geleefd met beperkingen. Ze hebben ook een sterke <\/span>negatieve invloed op de gezondheidsgerelateerde kwaliteit van leven<\/span><\/a> en gaan gepaard met <\/span>hogere percentages angst en depressie<\/span><\/a> dan bij de algemene bevolking.<\/span><\/p>\n MyLifeTool<\/b><\/a> is een zelfmanagementtool voor mensen die leven met een chronische aandoening (bijv. diabetes, multiple sclerose, chronische pijn, astma, angststoornissen, neurodivergentie, niet-aangeboren hersenletsel, fibromyalgie). De tool werd ontwikkeld in samenwerking met mensen met chronische aandoeningen, leden van <\/span>Neuro Key<\/span><\/a> en psychologen van Teesside University. Het is gebaseerd op ons <\/span>zelfmanagement raamwerk<\/span><\/a> dat een persoonsgerichte, niet-instructieve benadering van zelfmanagement hanteert. Mensen met chronische aandoeningen stonden centraal in het project: zij bepaalden hoe MyLifeTool eruit zou zien en kozen de naam.<\/span><\/p>\n Zelfmanagement strategie\u00ebn voor chronische aandoeningen <\/span>richten zich vaak op medische uitkomsten<\/span><\/a> en gedragsverandering, waarbij <\/span>de sociale en relationele context over het hoofd wordt gezien<\/span><\/a>. Zelfmanagement kan echter ook worden gezien als <\/span>een levenslang, vloeiend proces<\/span><\/a> dat verandert afhankelijk van de levensomstandigheden en symptomen. Daarom wordt voorgesteld om <\/span>de overstap te maken van instruerende benaderingen<\/span><\/a> naar methodes die mensen ondersteunen bij het ontwikkelen van hun eigen hulpbronnen. Vanuit dit perspectief zien wij zelfmanagement als <\/span>een reis naar het (her)vinden van betekenis en zingeving in het leven<\/span><\/a>. Het is een continu proces dat mensen benaderen vanuit hun eigen perspectief, passend bij hun leven, doelen, behoeften en de veranderingen in hun aandoening. Het gaat om de mens, niet om de diagnose. Daarom vraagt MyLifeTool gebruikers ook actief na te denken over welke strategie\u00ebn voor hen wel en niet werken.<\/span><\/p>\n MyLifeTool bestaat uit vijf boekjes met verschillende positieve psychologie-oefeningen die mensen aanmoedigen hun sterke kanten te verkennen. Onderzoek toont aan dat e<\/span>en leven met zingeving belangrijk is voor mensen met chronische aandoeningen<\/span><\/a>, en <\/span>dit wordt geassocieerd met persoonlijke groei en betere gezondheidsuitkomsten<\/span><\/a>.<\/span><\/p>\n Boek 1: “Ik en mijn aandoening”<\/b> richt zich op identiteit en het leren om jezelf in een positiever licht te zien. Het gaat om mildheid voor jezelf en het besef dat je niet wordt gedefinieerd door je aandoening. Het boekje bevat oefeningen die je helpen nadenken over wie je bent, je waarden en verwachtingen.<\/span><\/p>\n Boek 2: “Mijn lichaam omarmen” <\/b>behandelt plannings- en doseringsstrategie\u00ebn, vaak gebruikt in zelfmanagementprogramma\u2019s. Oefeningen moedigen je aan te luisteren naar je lichaam, te herkennen wanneer je te veel hebt gedaan en manieren te vinden om je energieniveau beter te reguleren.<\/span><\/p>\n Boek 3: “De regie nemen” <\/b>gaat over het erkennen van je krachten, het opbouwen van veerkracht en het benutten van goede dagen. Je wordt gestimuleerd actiever te worden in het omgaan met je aandoening door meer te leren over je aandoening en hoe het past in je leven. Activiteiten bevatten het stellen van doelen en het herkennen van je sterktes.\u00a0<\/span><\/p>\n Boek 4: “Verbinden met anderen”<\/b> erkent het belang van steun ontvangen en geven, omdat beide bijdragen aan betekenis en zingeving. Oefeningen richten zich op het communiceren van je behoeften aan familie, vrienden, zorgverleners en andere professionals.<\/span><\/p>\n Boek 5: “Wat belangrijk is voor mij” <\/b>onderzoekt wat jou een gevoel van doel geeft in het leven en hoe je tijd voor jezelf kunt vrijmaken. Mensen vinden zingeving op verschillende manieren: bezig blijven, een reden hebben om op te staan, zichzelf uitdagen.<\/span><\/p>\n Om reflectie te ondersteunen, bevat MyLifeTool een plakboek: een creatieve ruimte mensen kan helpen met nadenken over hun ervaringen, doelen en successen. Het plakboek is open en niet-sturend: mensen kunnen creatieve technieken gebruiken die bij hen passen, of het simpelweg als dagboek gebruiken. <\/span>Creatieve benaderingen<\/span><\/a> als deze helpen mensen dieper op hun ervaringen in te gaan en er op authentieke wijze betekenis aan te geven.<\/span><\/p>\n MyLifeTool wordt gebruikt door Britse vrijwilligersorganisaties en professionals van de geestelijke gezondheidszorg. Het is gratis <\/span>online <\/span><\/a>beschikbaar voor mensen met chronische aandoeningen die het zelfstandig willen gebruiken of voor professionals om samen met cli\u00ebnten of pati\u00ebnten te gebruiken.<\/span><\/p>\n Gebruikers die MyLifeTool 12 weken gebruikten<\/span><\/a>, vonden het waardevol voor hun zelfmanagement, persoonlijke groei en acceptatie van het leven met een chronische aandoening. Metingen van welzijn voor en na het gebruik laten verbeteringen zien in zelfeffectiviteit, empowerment en temporiseren.<\/span><\/p>\n Vertaald door Isabelle Maussen en Denise van Rijen\u00a0<\/span><\/i><\/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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benadering van zelfmanagement<\/b><\/h4>\n
De opbouw van MyLifeTool<\/b><\/h4>\n
Het Reflectieve Plakboek<\/b><\/h4>\n
Evaluatie van MyLifeTool<\/b><\/h4>\n
Praktische aanbevelingen<\/b><\/h4>\n
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