Patients’, carers’ and providers’ experiences and requirements for support in self-management of multiple sclerosis: a qualitative study

2013 ◽  
Vol 1 (2) ◽  
pp. 457 ◽  
Author(s):  
Francesca Deibel ◽  
Michelle Edwards ◽  
Adrian Edwards
Keyword(s):  
Multiple Sclerosis ◽  
Qualitative Study ◽  
Focus Groups ◽  
Management Strategies ◽  
Strong Relationship ◽  
Information Provision ◽  
Self Management ◽  
Management Skills ◽  
Long Term Conditions ◽  
Management Interventions

Background: Self-management is a process increasingly promoted for the management of long term conditions, both for ethical reasons of enhancing autonomy and for likely cost-effectiveness, but the nature and scope of self-management strategies are currently highly variable.Objective: To identify patients’, carers’ and clinicians’ current experiences of self-management in multiple sclerosis (MS) and their recommendations for the development of a future MS-specific self-management interventionMethods: Qualitative study using focus groups and semi-structured one-to-one interviews with a purposive sample. Three focus groups were held with 25 patients with moderate to advanced multiple sclerosis and 4 carers. Ten clinicians were interviewed. Data underwent thematic analysis.Results: Participants perceived multiple aspects of MS to be amenable to self-management, but identified a current lack of service provision to support their abilities to self-manage. Participants felt that to address both the physical and psychosocial challenges posed by MS required better information provision, a strong relationship with healthcare professionals and a toolkit of self-management skills. Participants expressed concern at the lack of consideration currently given to carers, which should be addressed in future provision.Conclusion: The diverse experiences of patients living with MS warrant a multidisciplinary, flexible and proactive approach to improve their self-management capabilities, acknowledging both patients’ and carers’ unmet needs. The findings can be used to guide the development of future self-management interventions specific to individuals with multiple sclerosis.

scholarly journals Understanding how patients establish strategies for living with asthma: a qualitative study in UK primary care as part of IMP2ART

2020 ◽  
Vol 70 (694) ◽  
pp. e303-e311 ◽  
Author(s):  
Luke Daines ◽  
Susan Morrow ◽  
Sharon Wiener-Ogilvie ◽  
Caroline Scott ◽  
Liz Steed ◽  
...  
Keyword(s):  
Primary Care ◽  
Qualitative Study ◽  
Focus Groups ◽  
Cognitive Skills ◽  
Action Plan ◽  
Management Strategies ◽  
Asthma Patient ◽  
Self Management ◽  
Children With Asthma ◽  
Prompt Action

BackgroundIn the context of a variable condition such as asthma, patient recognition of deteriorating control and knowing what prompt action to take is crucial. Yet, implementation of recommended self-management strategies remains poor.AimTo explore how patients with asthma and parents/carers of children with asthma develop and establish recommended self-management strategies for living with asthma, and how clinicians can best support the process.Design and settingA qualitative study in UK primary care.MethodPatients with asthma and parents/carers of children with asthma from 10 general practices were purposively sampled (using age, sex, and duration of asthma) to participate in focus groups or interviews between May 2016 and August 2016. Participants’ experiences of health care, management of asthma, and views on supported self-management were explored. Interviews and focus group sessions were audio-recorded and transcribed verbatim. Iterative thematic analysis was conducted, guided by the research questions and drawing on habit theory in discussion with a multidisciplinary research team.ResultsA total of 49 participants (45 patients; 4 parents/carers) took part in 32 interviews and five focus groups. Of these, 11 reported using an action plan. Patients learnt how to self-manage over time, building knowledge from personal experience and other sources, such as the internet. Some regular actions, for example, taking medication, became habitual. Dealing with new or unexpected scenarios required reflective abilities, which may be supported by a tailored action plan.ConclusionPatients reported learning intuitively how to self-manage. Some regular actions became habitual; dealing with the unexpected required more reflective cognitive skills. In order to support implementation of optimal asthma self- management, clinicians should consider both these aspects of self-management and support, and educate patients proactively.

scholarly journals A qualitative study of stakeholder views on the use of a digital app for supported self-management in early intervention services for psychosis

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Thomas Steare ◽  
Maria Giorgalli ◽  
Katherine Free ◽  
Jasmine Harju-Seppänen ◽  
Syeda Akther ◽  
...  
Keyword(s):  
Early Intervention ◽  
Management Strategies ◽  
Active Role ◽  
Feasibility Trial ◽  
Self Management ◽  
Service Users ◽  
Personal Recovery ◽  
Long Term Conditions ◽  
Management Interventions ◽  
Early Intervention In Psychosis

Abstract Background Digital tools such as Smartphones have the potential to increase access to mental health support including self-management interventions for individuals with psychosis, and ultimately to improve outcomes. Self-management strategies, including relapse prevention and crisis planning and setting personal recovery goals, are intended to assist people with long-term conditions to take an active role in their recovery, with evidence for a range of benefits. However, their implementation is inconsistent, and access and uptake need to be improved. The current study explores the acceptability of a Smartphone app (My Journey 3) that has been developed to facilitate supported self-management in Early Intervention in Psychosis (EIP) services. Methods Semi-structured one-to-one interviews were conducted with twenty-one EIP service users who had access to My Journey 3 as part of a feasibility trial, and with thirteen EIP service clinicians who were supporting service users with the app. Interviews focused on the acceptability and usability of My Journey 3. Data was coded to themes based on the Acceptability of Healthcare Interventions framework. Results Many service user participants found My Journey 3 to be acceptable. The symptom and medication trackers in particular were described as helpful. A smaller number of service users disliked the intervention. Individual-level factors that appeared to influence acceptability and engagement included recovery stage and symptom severity. Clinicians tended to report that My Journey 3 was a potentially positive addition to service users’ care, but they often felt unable to provide support due to competing demands in their work, which in turn may have impacted acceptability and usage of the app. Conclusions Our findings suggest that the app is perceived as having potential to improve users’ capacity to self-manage and work towards recovery goals, but barriers prevented many clinicians providing consistent and effective support as intended. Further evaluation of supported self-management apps in psychosis is warranted but needs to address implementation challenges from the start.

scholarly journals Effectiveness of self-management interventions in inflammatory arthritis: a systematic review informing the 2021 EULAR recommendations for the implementation of self-management strategies in patients with inflammatory arthritis

RMD Open ◽  
2021 ◽  
Vol 7 (2) ◽  
pp. e001647
Author(s):  
Andréa Marques ◽  
Eduardo Santos ◽  
Elena Nikiphorou ◽  
Ailsa Bosworth ◽  
Loreto Carmona
Keyword(s):  
Systematic Review ◽  
Full Text ◽  
Inflammatory Arthritis ◽  
Data Extraction ◽  
Management Strategies ◽  
Psychosocial Interventions ◽  
Behavioural Therapy ◽  
Self Management ◽  
Cochrane Library ◽  
Management Interventions

ObjectiveTo perform a systematic review (SR) on the effectiveness of self-management interventions, in order to inform the European League Against Rheumatism Recommendations for its implementation in patients with inflammatory arthritis (IA).MethodsThe SR was conducted according to the Cochrane Handbook and included adults (≥18 years) with IA. The search strategy was run in Medline through PubMed, Embase, Cochrane Library, CINAHL Plus with Full Text, and PEDro. The assessment of risk of bias, data extraction and synthesis were performed by two reviewers independently. A narrative Summary of Findings was provided according to the Grading of Recommendations, Assessment, Development and Evaluation.ResultsFrom a total 1577 references, 57 were selected for a full-text review, and 32 studies fulfilled the inclusion criteria (19 randomised controlled trials (RCTs) and 13 SRs). The most studied self-management components were specific interactive disease education in ten RCTs, problem solving in nine RCTs, cognitive–behavioural therapy in eight RCTs, goal setting in six RCTs, patient education in five RCTs and response training in two RCTs. The most studied interventions were multicomponent or single exercise/physical activity in six SRs, psychosocial interventions in five SRs and education in two SRs. Overall, all these specific components and interventions of self-management have beneficial effects on IAs-related outcomes.ConclusionsThe findings confirm the beneficial effect of the self-management interventions in IA and the importance of their implementation. Further research should focus on the understanding that self-management is a complex intervention to allow the isolation of the effectiveness of its different components.

scholarly journals Patients’ and healthcare professionals’ beliefs, perceptions and needs towards chronic kidney disease self-management in China: a qualitative study

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e044059
Author(s):  
Hongxia Shen ◽  
Rianne M J J van der Kleij ◽  
Paul J M van der Boog ◽  
Wenjiao Wang ◽  
Xiaoyue Song ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Qualitative Study ◽  
Healthcare Professionals ◽  
Illness Perceptions ◽  
Chinese Patients ◽  
Self Management ◽  
Tertiary Referral Hospital ◽  
Chinese Context ◽  
Management Interventions

ObjectivesTo support the adaptation and translation of an evidence-based chronic kidney disease (CKD) self-management intervention to the Chinese context, we examined the beliefs, perceptions and needs of Chinese patients with CKD and healthcare professionals (HCPs) towards CKD self-management.DesignA basic interpretive, cross-sectional qualitative study comprising semistructured interviews and observations.SettingOne major tertiary referral hospital in Henan province, China.Participants11 adults with a diagnosis of CKD with CKD stages G1–G5 and 10 HCPs who worked in the Department of Nephrology.ResultsFour themes emerged: (1) CKD illness perceptions, (2) understanding of and motivation towards CKD self-management, (3) current CKD practice and (4) barriers, (anticipated) facilitators and needs towards CKD self-management. Most patients and HCPs solely mentioned medical management of CKD, and self-management was largely unknown or misinterpreted as adherence to medical treatment. Also, the majority of patients only mentioned performing disease-specific acts of control and not, for instance, behaviour for coping with emotional problems. A paternalistic patient–HCP relationship was often present. Finally, the barriers, facilitators and needs towards CKD self-management were frequently related to knowledge and environmental context and resources.ConclusionsThe limited understanding of CKD self-management, as observed, underlines the need for educational efforts on the use and benefits of self-management before intervention implementation. Also, specific characteristics and needs within the Chinese context need to guide the development or tailoring of CKD self-management interventions. Emphasis should be placed on role management and emotional coping skills, while self-management components should be tailored by addressing the existing paternalistic patient–HCP relationship. The use of electronic health innovations can be an essential facilitator for implementation.

Theoretical and contextual considerations for self-management strategies of children and adolescents with chronic diseases: An integrative review

2021 ◽  
pp. 136749352110136
Author(s):  
Logan J Camp-Spivey ◽  
Ayaba Logan ◽  
Michelle Nichols
Keyword(s):  
Children And Adolescents ◽  
Chronic Diseases ◽  
Management Strategies ◽  
Healthcare Providers ◽  
Integrative Review ◽  
Self Management ◽  
Intervention Delivery ◽  
Management Interventions ◽  
Technological Platforms ◽  
Management Behaviors

The primary aim of this integrative review was to critically evaluate and synthesize published, peer-reviewed research to better understand self-management strategies of children and adolescents with chronic diseases. This review was guided by Whittemore and Knafl’s methodological framework. The Pediatric Self-management Model provided the theoretical framework for understanding how self-management behaviors operate within the domains of individual, family, community, and healthcare systems. In June 2019, the electronic databases of EBSCOhost, PubMed, and Scopus, along with reference lists of applicable studies, were searched for appropriate publications. The initial searches yielded 920 citations. Of these, 11 studies met inclusion criteria. A key finding was that involving children and adolescents in the design and delivery phases of interventions was most effective in improving self-management when the interventions did not outweigh cognitive ability or maturity level. In addition, incorporating self-efficacy promotion into self-management interventions may lead to greater sense of responsibility and improved health outcomes. In terms of intervention delivery of self-management strategies, the use of technological platforms and devices was revealed as a promising avenue for youth. A final implication was the importance of family members, peers, and healthcare providers in supporting children and adolescents in adopting self-management behaviors.

scholarly journals The Path to Self-Management: A Qualitative Study Involving Older People with Multiple Sclerosis

2012 ◽  
Vol 64 (1) ◽  
pp. 6-17 ◽  
Author(s):  
Michelle Ploughman ◽  
Mark W. Austin ◽  
Michelle Murdoch ◽  
Anne Kearney ◽  
Marshall Godwin ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Qualitative Study ◽  
Older People ◽  
Self Management

Action plans in idiopathic pulmonary fibrosis: a qualitative study—‘I do what I can do’

2021 ◽  
pp. bmjspcare-2020-002831
Author(s):  
Meena Kalluri ◽  
Sarah Younus ◽  
Nathan Archibald ◽  
Janice Richman-Eisenstat ◽  
Charlotte Pooler
Keyword(s):  
Qualitative Study ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Lung Disease ◽  
Self Efficacy ◽  
Symptom Management ◽  
Management Strategies ◽  
Self Management ◽  
Chronic Obstructive ◽  
Action Plans

BackgroundIdiopathic pulmonary fibrosis (IPF) is a progressive, incurable fibrotic lung disease in which patients and caregivers report a high symptom burden. Symptoms are often poorly managed and patients and caregivers struggle to alleviate their distress in the absence of self-management support.AimTo explore perceptions of symptoms, symptom management strategies and self-efficacy for patients with IPF and caregivers who received self-management education and action plans created and provided in a Multidisciplinary Collaborative Interstitial Lung Disease (MDC-ILD) Clinic.DesignA qualitative study was conducted with participants recruited from the MDC-ILD Clinic. Participants received an early integrated palliative approach; most attended ILD pulmonary rehabilitation and some received home care support. Semistructured interviews were conducted. Patient participants completed Measure Yourself Medical Outcome Profile (MYMOP) for symptom assessment and Chronic Obstructive Pulmonary Disease Self-Efficacy Scale to assess self-management efficacy.ResultsThirteen patients and eight self-declared caregiver participants were interviewed. IPF severity ranged from mild to advanced disease. Participants integrated and personalised self-management strategies. They were intentional and confident, focused on living well and engaged in anticipatory planning. Twelve participants completed the MYMOP. Five reported dyspnoea. Four reported fatigue as an additional or only symptom. One reported cough. Five declared no dyspnoea, cough or fatigue. Participants reported 80% self-efficacy in symptom management.ConclusionsThe approach to symptom self-management and education was beneficial to patients with IPF and caregiver participants. Participants personalised the strategies, focusing on living, and planned both in the moment and for the future. They were confident and expressed dignity and meaning in their lives.

scholarly journals How young children learn independent asthma self-management: a qualitative study in Malaysia

2020 ◽  
Vol 105 (9) ◽  
pp. 819-824
Author(s):  
Siti Nurkamilla Ramdzan ◽  
Ee Ming Khoo ◽  
Su May Liew ◽  
Steven Cunningham ◽  
Marilyn Kendall ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Focus Groups ◽  
Primary Schools ◽  
Health Centre ◽  
Smooth Transition ◽  
Self Management ◽  
Theory Approach ◽  
Individual Interviews ◽  
National Medical ◽  
Children With Asthma

ObjectiveWe aimed to explore the views of Malaysian children with asthma and their parents to enhance understanding of early influences on development of self-management skills.DesignThis is a qualitative study conducted among children with asthma and their parents. We used purposive sampling and conducted focus groups and interviews using a semi-structured topic guide in the participants’ preferred language. All interviews were audio-recorded, transcribed verbatim, entered into NVivo and analysed using a grounded theory approach.SettingsWe identified children aged 7–12 years with parent-reported, physician-diagnosed asthma from seven suburban primary schools in Malaysia. Focus groups and interviews were conducted either at schools or a health centre.ResultsNinety-nine participants (46 caregivers, 53 children) contributed to 24 focus groups and 6 individual interviews. Children mirrored their parents’ management of asthma but, in parallel, learnt and gained confidence to independently self-manage asthma from their own experiences and self-experimentation. Increasing independence was more apparent in children aged 10 years and above. Cultural norms and beliefs influenced children’s independence to self-manage asthma either directly or indirectly through their social network. External influences, for example, support from school and healthcare, also played a role in the transition.ConclusionChildren learnt the skills to self-manage asthma as early as 7 years old with growing independence from the age of 10 years. Healthcare professionals should use child-centred approach and involve schools to facilitate asthma self-management and support a smooth transition to independent self-management.Trial registration numberMalaysian National Medical Research Register (NMRR-15-1242-26898).

scholarly journals ‘It’s about willpower in the end. You’ve got to keep going’: a qualitative study exploring the experience of pain in inflammatory bowel disease

2019 ◽  
Vol 13 (4) ◽  
pp. 201-213 ◽  
Author(s):  
Louise Sweeney ◽  
Rona Moss-Morris ◽  
Wladyslawa Czuber-Dochan ◽  
Laure Belotti ◽  
Zoe Kabeli ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Pain Management ◽  
Qualitative Study ◽  
Bowel Disease ◽  
Management Strategies ◽  
Emotional Impact ◽  
Management Interventions ◽  
Inflammatory Bowel ◽  
Behavioural Therapies ◽  
Physical Impact

Background: Pain is a widely experienced symptom of inflammatory bowel disease (IBD), which has significant psychological and functional impacts on patients. Understanding the aetiology and management of chronic pain is a poorly understood area of IBD research. This qualitative study aimed to explore the experiences of individuals with IBD and pain, the pain management strategies they use and any needs for future pain management interventions. Methods: In all, 14 individuals with IBD were purposively recruited and interviewed (face-to-face or telephone) using a topic guide. Interviews were transcribed and analysed using inductive thematic analysis. Results: Themes identified were ‘vicious cycles’, ‘findings solutions’ and ‘attitudes’. The experience and impact of pain were rarely viewed in isolation, but rather within the context of a cycle of IBD symptoms. Other ‘vicious cycles’ identified included anxiety, avoidance and inactivity, and poor understanding and communication. Pain management included short- and long-term strategies. Searching for a solution for pain had an emotional impact on individuals. There were contrasting attitudes from participants, including defeat, tolerance and acceptance. Conclusion: This study provides an understanding of the experience of pain in IBD. The interaction of pain with accompanying IBD symptoms has an emotional and physical impact on individuals, and creates a barrier to adequate assessment, understanding and treatment of pain. Patients rely on their own experiences, and a trial and error approach to apply helpful strategies. Adjuvant behavioural therapies may be beneficial for patients experiencing pain and psychological distress, and to facilitate self-management.

Sign in / Sign up

Export Citation Format

Share Document