{"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\/my\/2025\/08\/mylifetool-a-person-centred-holistic-approach-to-the-self-management-of-long-term-conditions\/","title":{"rendered":"MyLifeTool: Pendekatan holistik berpusatkan individu untuk pengurusan kendiri untuk penyakit kronik"},"content":{"rendered":"

Oleh Dr. Stephanie K\u0131l\u0131n\u00e7, Universiti Teesside, UK dan Jo Cole, <\/span>the Tees Valley, Durham and North Yorkshire Neurological Alliance, UK<\/span>\u00a0<\/span><\/p>\n

Penyakit kronik merupakan kebimbangan utama bagi sistem penjagaan kesihatan global kerana kadar kejadiannya <\/span>yang tinggi<\/span><\/a> dan <\/span>beban penyakit yang besar, termasuk kesannya yang ketara terhadap tahun hayat pelarasan ketakupayaan<\/span><\/a> (disability-adjusted life years)<\/span><\/i>. Ia juga memberi<\/span> kesan negatif yang signifikan terhadap kualiti hidup<\/span><\/a> berkaitan kesihatan dan dikaitkan dengan <\/span>kadar kebimbangan dan kemurungan<\/span><\/a> yang lebih tinggi berbanding populasi umum.<\/span><\/p>\n

MyLifeTool<\/span><\/i><\/a> ialah alat pengurusan kendiri untuk individu yang hidup dengan sebarang penyakit kronik (contohnya: diabetes, sklerosis berbilang, kesakitan kronik, asma, kebimbangan, keadaan neuroperkembangan, kecederaan otak, fibromyalgia). Ia dibina melalui kerjasama dengan individu yang menghidap penyakit kronik, ahli <\/span>Neuro Key<\/span><\/i><\/a>,<\/span><\/i> dan pakar psikologi dari Universiti Teesside. Alat ini berasaskan rangka kerja <\/span>pengurusan kendiri yang mengambil pendekatan berpusatkan individu<\/span><\/a> dan tidak bersifat arahan. Individu yang hidup dengan sebarang penyakit kronik\u00a0 terlibat dalam projek ini, dengan memainkan peranan utama dalam menentukan arah dan nama MyLifeTool.<\/span><\/p>\n

Pendekatan kami terhadap pengurusan kendiri<\/b><\/p>\n

Strategi pengurusan kendiri untuk penyakit kronik selalunya <\/span>menumpukan kepada hasil perubatan dan strategi kawalan<\/span><\/a>, serta terlalu menekankan perubahan tingkah laku <\/span>sehingga mengabaikan konteks sosial dan hubungan<\/span><\/a> sosial. Sebagai alternatif, pengurusan kendiri bagi penyakit kronik boleh dilihat sebagai satu proses seumur hidup yang fleksibel dan boleh berubah mengikut keadaan hidup dan turun naik gejala. Oleh itu, terdapat cadangan untuk <\/span>beralih daripada pendekatan pengurusan kendiri <\/span><\/a>yang bersifat arahan kepada pendekatan yang menyokong individu untuk mempertimbangkan dan membangunkan sumber pengurusan kendiri mereka sendiri.<\/span><\/p>\n

Dengan pendekatan ini, kami melihat pengurusan kendiri sebagai satu perjalanan ke arah mencari atau mengekalkan <\/span>makna dan tujuan dalam kehidupan<\/span><\/a>. Ia merupakan satu proses yang berterusan yang dilalui oleh setiap individu dari perspektif mereka sendiri, agar selaras dengan kehidupan, matlamat dan keperluan mereka serta perubahan dalam keadaan kesihatan mereka. Pengurusan kendiri juga memberi fokus kepada individu itu sendiri, bukan semata-mata pada diagnosis.<\/span><\/p>\n

Atas sebab ini, sebahagian besar daripada <\/span>MyLifeTool<\/span><\/i> memerlukan pengguna untuk merenung dan menilai strategi pengurusan kendiri yang berkesan atau tidak berkesan bagi diri mereka.<\/span><\/p>\n

Bagaimana MyLifeTool distruktur\u00a0<\/span><\/p>\n

MyLifeTool<\/span><\/i> terdiri daripada lima buku panduan yang mengandungi pelbagai aktiviti psikologi positif, yang menggalakkan individu meneroka kekuatan diri mereka. Kajian telah mendapati bahawa <\/span>menjalani kehidupan yang penuh makna adalah penting bagi individu yang menghidap penyakit<\/span><\/a> kronik<\/span> dan ia <\/span>dikaitkan dengan pertumbuhan peribadi serta hasil kesihatan yang lebih baik.<\/span><\/a><\/p>\n

Buku 1: \u201c<\/span>Me and my condition<\/b>\u201d memberi tumpuan kepada identiti dan bagaimana untuk mula melihat diri sendiri dalam sudut yang lebih positif. Ia mengenai bagaimana untuk lebih sayangi diri sendiri dan menyedari bahawa anda tidak ditentukan oleh keadaan kesihatan anda. Buku panduan ini mengandungi aktiviti-aktiviti yang menggalakkan individu berfikir tentang siapa diri mereka, nilai-nilai yang mereka pegang, dan apa yang mereka harapkan daripada diri sendiri.<\/span><\/p>\n

Buku 2: \u201c<\/span>Embracing my body<\/b>\u201d meneroka strategi perancangan dan penyesuaian kadar aktiviti yang sering digunakan dalam program pengurusan kendiri. Aktiviti-aktiviti dalam buku ini menggalakkan anda untuk memahami isyarat tubuh anda, mengenal pasti bila anda telah melakukan terlalu banyak, dan merenung cara-cara untuk mengurus tahap tenaga anda.<\/span><\/p>\n

Buku 3: \u201c<\/span>Taking charge<\/b>\u201d berkaitan dengan mengenal pasti kekuatan diri, membina daya ketahanan dan memanfaatkan hari-hari yang baik. Ia menggalakkan anda untuk lebih proaktif dalam pengurusan keadaan anda dengan mempelajari lebih lanjut tentang penyakit tersebut dan bagaimana ia sesuai dalam kehidupan anda. Aktiviti-aktiviti termasuk penetapan matlamat dan pengenalpastian kekuatan diri.<\/span><\/p>\n

Buku 4: \u201c<\/span>Connecting with others<\/b>\u201d mengiktiraf kepentingan menerima sokongan, serta manfaat memberi sokongan kepada orang lain, kerana kedua-duanya boleh meningkatkan makna dan tujuan dalam kehidupan. Aktiviti-aktiviti dalam buku ini meneroka cara untuk menyampaikan keperluan anda kepada orang lain, seperti ahli keluarga dan rakan-rakan, serta pengawai perubatan dan profesional lain.<\/span><\/p>\n

Buku 5: \u201cApa yang Penting bagi Saya\u201d meneliti perkara yang memberi makna dan tujuan dalam hidup anda serta bagaimana anda boleh meluangkan masa untuk diri sendiri. Setiap individu menetapkan tujuan hidup dengan cara yang berbeza: menyibukkan diri; mencari sebab untuk bangun pada waktu pagi; atau mencabar diri sendiri.<\/span><\/p>\n

Buku Skrap Reflektif<\/span><\/p>\n

Untuk menyokong proses refleksi, <\/span>MyLifeTool<\/span><\/i> mengandungi sebuah buku skrap \u2013 ruang kreatif yang boleh membantu individu berfikir tentang pengalaman, matlamat dan pencapaian mereka. Buku skrap ini bersifat terbuka dan tidak mengarah, membolehkan individu menggunakan pelbagai teknik aktiviti kreatif yang sesuai dengan mereka, atau menggunakannya sebagai diari sekiranya itu lebih digemari. <\/span>Pendekatan kreatif <\/span><\/a>seperti ini dapat membantu individu meneroka pengalaman mereka dengan lebih mendalam dan merenung maknanya dengan cara yang lebih tulen.<\/span><\/p>\n

MyLifeTool<\/span><\/i> digunakan oleh organisasi sektor sukarela yang berpangkalan di UK dan pengamal kesihatan mental. Ia tersedia secara percuma <\/span>dalam talian<\/span><\/a> untuk digunakan sendiri oleh individu yang menghidap penyakit kronik atau oleh pengamal untuk digunakan bersama pesakit\/klien mereka.<\/span><\/p>\n

Penilaian MyLifeTool<\/b><\/p>\n

Individu yang menggunakan <\/span>MyLifeTool<\/span><\/i> selama 12 minggu<\/span><\/a> mendapati ia bermanfaat dalam menyokong pengurusan kendiri, pengurusan peribadi, dan meningkatkan penerimaan mereka terhadap kehidupan dengan penyakit kronik. Ukuran kesejahteraan yang diambil sebelum dan selepas menggunakan alat ini juga menunjukkan peningkatan dalam kecekapan kendiri, pemerkasaan, dan keupayaan mengatur kadar aktiviti.<\/span><\/p>\n

Practical recommendations<\/b><\/p>\n

Cadangan Praktikal<\/b><\/p>\n

Lihat individu secara menyeluruh<\/b>, <\/span>bukan sekadar diagnosis<\/b>: Peyakit kronik mempengaruhi semua aspek kehidupan seseorang. Kita boleh menyokong individu untuk merenung bagaimana keadaan mereka boleh disesuaikan dalam kehidupan mereka, dengan mengambil kira perubahan yang mungkin berlaku dalam keadaan kesihatan, situasi kehidupan, keperluan, dan matlamat masa depan mereka.<\/span><\/p>\n

Pengurusan kendiri adalah satu proses berterusan:<\/b> Seseorang tidak boleh mempelajari cara untuk mengurus keadaan kesihatan mereka hanya melalui kursus jangka pendek. Penyakit kronik berkemungkinan berterusan seumur hidup, dan gejala serta kesannya boleh berubah-ubah. Menggalakkan individu untuk merenung tentang pengurusan kendiri mereka boleh membantu mereka menyesuaikan diri dengan perubahan dalam keadaan hidup dan kesihatan mereka dalam jangka masa panjang.<\/span><\/p>\n

Makna dan tujuan hidup:<\/b> Sokong individu yang menghidap penyakit kronik untuk merenung dan meneroka perkara yang memberi makna dan tujuan dalam kehidupan mereka.<\/span><\/p>\n

Fokus kepada kekuatan:<\/b> Individu yang telah menggunakan <\/span>MyLifeTool<\/span><\/i> menghargai pendekatannya yang menumpukan kepada apa yang boleh dilakukan oleh mereka yang menghidap penyakit kronik, dan bukan pada apa yang mereka tidak boleh lakukan.<\/span><\/p>\n

Diterjemahkan oleh Dr Sangeeta Singh<\/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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