Literature DB >> 17852315

What can we learn from the personal insights of individuals living and coping with multiple sclerosis?

K S Malcomson1, A S Lowe-Strong, L Dunwoody.   

Abstract

PURPOSE: The aim of this qualitative study was to explore the personal accounts of individuals with Multiple Sclerosis (MS). Hence the study presents individuals experiences of living with MS to date and the effective self-management strategies employed to cope in day-to-day life.
METHODS: Thematic analysis was used to explore the personal narratives of thirteen individuals with MS in two focus group discussions.
RESULTS: Participants in both groups identified similar themes related to the experiences of living and coping with MS. These were: Learning something was wrong (before diagnosis); getting a name (diagnosis); lack of professional support; unchanging family relationships, adjustments to employment circumstances and social life; challenges; successful coping via proactivity, perspective and control (self-management techniques); advice for others, and recommendations as to how services could be improved and developed.
CONCLUSION: The most salient finding is that there is a need for a formal approach to the management of psychosocial problems and challenges associated with MS. This will require both users and health professionals working together to further the development of clinical guidelines and services for this population.

Entities:  

Mesh:

Year:  2008        PMID: 17852315     DOI: 10.1080/09638280701400730

Source DB:  PubMed          Journal:  Disabil Rehabil        ISSN: 0963-8288            Impact factor:   3.033


  22 in total

1.  The multiple sclerosis self-management scale: clinicometric testing.

Authors:  Setareh Ghahari; Lana S Khoshbin; Susan J Forwell
Journal:  Int J MS Care       Date:  2014

Review 2.  Chronic diseases influence major life changing decisions: a new domain in quality of life research.

Authors:  Zu Bhatti; Ms Salek; Ay Finlay
Journal:  J R Soc Med       Date:  2011-06       Impact factor: 5.344

3.  The Patient Activation Measure: a validation study in a neurological population.

Authors:  Tanya L Packer; George Kephart; Setareh Ghahari; Åsa Audulv; Joan Versnel; Grace Warner
Journal:  Qual Life Res       Date:  2015-01-06       Impact factor: 4.147

Review 4.  Life issues in multiple sclerosis.

Authors:  Rex D Simmons
Journal:  Nat Rev Neurol       Date:  2010-09-21       Impact factor: 42.937

5.  Exploring Self-management Needs of Persons With Multiple Sclerosis: A Qualitative Study for Mobile Application Development.

Authors:  Shahla Damanabi; Zeinab Salimzadeh; Leila R Kalankesh; Sheida Shaafi; Reza Ferdousi
Journal:  Int J MS Care       Date:  2021-04-16

6.  Lifestyle, exercise and activity package for people living with progressive multiple sclerosis (LEAP-MS): protocol for a single-arm feasibility study.

Authors:  Julie Latchem-Hastings; Elizabeth Randell; Kate Button; Fiona Jones; Rachel Lowe; Helen Dawes; Fiona Wood; Freya Davies; Vincent Poile; Rhian O'Halloran; Barbara Stensland; Emma Tallantyre; Rebecca Playle; Adrian Edwards; Monica Busse
Journal:  Pilot Feasibility Stud       Date:  2021-05-22

7.  Understanding unexpected courses of multiple sclerosis among patients using complementary and alternative medicine: A travel from recipient to explorer.

Authors:  Anita Salamonsen; Laila Launsø; Tove E Kruse; Sissel H Eriksen
Journal:  Int J Qual Stud Health Well-being       Date:  2010-07-02

8.  'You are just left to get on with it': qualitative study of patient and carer experiences of the transition to secondary progressive multiple sclerosis.

Authors:  F Davies; A Edwards; K Brain; M Edwards; R Jones; R Wallbank; N P Robertson; F Wood
Journal:  BMJ Open       Date:  2015-07-22       Impact factor: 2.692

Review 9.  Experiences of UK health-care services for people with Multiple Sclerosis: a systematic narrative review.

Authors:  Abigail M Methley; Carolyn Chew-Graham; Stephen Campbell; Sudeh Cheraghi-Sohi
Journal:  Health Expect       Date:  2014-07-02       Impact factor: 3.377

10.  A Smartphone-based Application for Self-Management in Multiple Sclerosis.

Authors:  Mahdieh Mokhberdezfuli; Haleh Ayatollahi; Abdorreza Naser Moghadasi
Journal:  J Healthc Eng       Date:  2021-06-16       Impact factor: 2.682

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