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

Purpose.The aim of this study was to determine what factors most greatly contributed to healthy aging with multiple sclerosis (MS) from the perspective of a large sample of older people with MS.Design and Methods.Participants (n=683; >55 years of age with symptoms >20 years) provided answers to an open-ended question regarding healthy aging and were categorized into three groups, 55–64 (young), 65–74 (middle), and 75 and over (oldest old). Sociodemographic actors were compared using ANOVA. Two independent raters used the framework method of analyzing qualitative data.Results.Participants averaged 64 years of age(±6.2)with MS symptoms for 32.9 years(±9.4). 531 participants were female (78%). The majority of participants lived in their own home (n=657) with a spouse or partner (n=483). Participants described seven themes: social connections, attitude and outlook on life, lifestyle choices and habits, health care system, spirituality and religion, independence, and finances. These themes had two shared characteristics, multidimensionality and interdependence.Implications.Learning from the experiences of older adults with MS can help young and middle aged people with MS plan to age in their own homes and communities. Our data suggests that older people with MS prioritize factors that are modifiable through targeted self-management strategies.

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Self-management and adherence with exercise-based falls prevention programmes: a qualitative study to explore the views and experiences of older people and physiotherapists

Disability and Rehabilitation ◽

10.3109/09638288.2013.797507 ◽

2013 ◽

Vol 36 (5) ◽

pp. 379-386 ◽

Cited By ~ 31

Author(s):

Lisa Robinson ◽

Julia L. Newton ◽

Diana Jones ◽

Pamela Dawson

Keyword(s):

Qualitative Study ◽

Older People ◽

Falls Prevention ◽

Self Management ◽

Prevention Programmes

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

European Journal for Person Centered Healthcare ◽

10.5750/ejpch.v1i2.687 ◽

2013 ◽

Vol 1 (2) ◽

pp. 457 ◽

Cited By ~ 11

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.

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Promoting self-management of multiple sclerosis in primary care

Primary Health Care ◽

10.7748/phc2010.03.20.2.32.c7602 ◽

2010 ◽

Vol 20 (2) ◽

pp. 32-39 ◽

Cited By ~ 4

Author(s):

Jenna Litchfield ◽

Sue Thomas

Keyword(s):

Multiple Sclerosis ◽

Primary Care ◽

Self Management

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Young adults’ perceptions of living with atopic dermatitis in relation to the concept of self-management: a qualitative study

BMJ Open ◽

10.1136/bmjopen-2020-044777 ◽

2021 ◽

Vol 11 (6) ◽

pp. e044777

Author(s):

Susanne Lundin ◽

Marina Jonsson ◽

Carl-Fredrik Wahlgren ◽

Emma Johansson ◽

Anna Bergstrom ◽

...

Keyword(s):

Young Adults ◽

Atopic Dermatitis ◽

Qualitative Study ◽

Healthcare Providers ◽

Transition Process ◽

Population Based ◽

Self Management ◽

School Age ◽

Perceived Availability ◽

Semistructured Interviews

ObjectivesLearning to take control of one’s health is an important part of the transition from adolescence to adulthood. This study aimed to explore young adults’ perceptions of living with atopic dermatitis (AD) in relation to the concept of self-management.DesignA qualitative study with an inductive approach was performed through semistructured interviews (n=15). The interviews were recorded, transcribed verbatim and analysed with systematic text condensation.ParticipantsYoung adults (mean age 23,4 years) with persistent AD in a longitudinal population-based birth cohort. To capture experience of living with persistent AD (preschool/school-age onset) of different severity (mild to severe/very severe), a purposive selection was performed. In total, 15 young adults were included. Persistent AD (preschool/school-age onset) was defined as dry skin in combination with itchy rash of typical localisation in the 12 months preceding the 16-year and the 24-year follow-ups. Severity was self-assessed using the Patient Oriented Eczema Measure.ResultsDespite having experience of AD since childhood, the respondents expressed uncertainty about treatment and how it affected their bodies. Their uncertainties and feelings affected how they used topical corticosteroids. The respondents emphasised that they perceived availability of healthcare and knowledge about treatment of AD among healthcare providers to be limited. The participants did not state any experiences of support to self-management from healthcare, which affect young adults’ possibilities to take full control of their AD care.ConclusionsYoung adults with preschool/school-age onset of AD are unsure how to treat and manage the disease. One explanation may be insufficient transition process.

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Understanding peer mentorship in supporting self‐management of hip and knee osteoarthritis: A qualitative study of mentees' perspectives

Musculoskeletal Care ◽

10.1002/msc.1580 ◽

2021 ◽

Author(s):

Elizabeth C. Lavender ◽

Anna M. Anderson ◽

Esther Dusabe‐Richards ◽

Deborah Antcliff ◽

Sarah R. Kingsbury ◽

...

Keyword(s):

Qualitative Study ◽

Knee Osteoarthritis ◽

Self Management ◽

Peer Mentorship

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

BMJ Open ◽

10.1136/bmjopen-2020-044059 ◽

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.

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A qualitative study of home care client and caregiver experiences with a complex cardio-respiratory management model

BMC Geriatrics ◽

10.1186/s12877-021-02251-5 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Connie Schumacher ◽

Darly Dash ◽

Fabrice Mowbray ◽

Lindsay Klea ◽

Andrew Costa

Keyword(s):

Health Service ◽

Qualitative Study ◽

Home Care ◽

Therapeutic Relationship ◽

Service Use ◽

Management Model ◽

Health Service Use ◽

Self Management ◽

Home Based ◽

Respiratory Management

Abstract Background Home care clients are typically older and have some degree of medical, physical, cognitive or social conditions that require formal or informal support to promote healthy aging in the community. Home care clients contribute a significant proportion of health service use, including emergency department visits. The DIVERT-CARE trial introduced a cardio-respiratory management model to improve client motivation, symptoms and rates of unwarranted health service use. Our objective was to explore the perceptions and experiences of individuals who participated in the DIVERT-CARE self-management support and education intervention. Methods A qualitative study was nested within a pragmatic randomized control trial and conducted following a 15-week multi-component cardio-respiratory intervention. A phenomenological descriptive design was employed using thematic analysis. Post-intervention, clients and their caregivers were invited to participate in a semi-structured telephone interview. Interview questions were designed to elicit the experience with the intervention components. Results A total of 29 interviews were completed from June 2018 to March 2020 from participants in Ontario, Newfoundland, and British Columbia. Three themes were identified; self-care trajectory and burden of responsibility, learning and behaviour change, and feeling connected pre-emptively to care providers, the information and medical advice, and connection through the therapeutic relationship. Conclusions Home care clients experience unique challenges in managing cardio-respiratory related chronic disease. Home-based interventions fostered a therapeutic relationship of connectedness while equipping clients with necessary knowledge and skills. These results inform recommendations for community nursing, and home-based self-management supports for older community-residing individuals.

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83 A Medication Self-Management Intervention to Improve Medication Adherence For Older People with Multimorbidity: A Pilot Study

Age and Ageing ◽

10.1093/ageing/afab030.44 ◽

2021 ◽

Vol 50 (Supplement_1) ◽

pp. i12-i42

Author(s):

C Yang ◽

Z Hui ◽

S Zhu ◽

X Wang ◽

G Tang ◽

...

Keyword(s):

Medication Adherence ◽

Pilot Study ◽

Older People ◽

Intervention Group ◽

Self Management ◽

Control Group ◽

Medication Knowledge ◽

Management Intervention ◽

Patient Reported

Abstract Introduction Medication self-management support has been recognised as an essential element in primary health care to promote medication adherence and health outcomes for older people with chronic conditions. A patient-centred intervention empowering patients and supporting medication self-management activities could benefit older people. This pilot study tested a newly developed medication self-management intervention for improving medication adherence among older people with multimorbidity. Method This was a two-arm randomised controlled trial. Older people with multimorbidity were recruited from a community healthcare centre in Changsha, China. Participants were randomly allocated to either a control group receiving usual care (n = 14), or to an intervention group receiving three face-to-face medication self-management sessions and two follow-up phone calls over six weeks, targeting behavioural determinants of adherence from the Information-Motivation-Behavioural skills model (n = 14). Feasibility was assessed through recruitment and retention rates, outcome measures collection, and intervention implementation. Follow-up data were measured at six weeks after baseline using patient-reported outcomes including medication adherence, medication self-management capabilities, treatment experiences, and quality of life. Preliminary effectiveness of the intervention was explored using generalised estimating equations. Results Of the 72 approached participants, 28 (38.89%) were eligible for study participation. In the intervention group, 13 participants (92.86%) completed follow-up and 10 (71.42%) completed all intervention sessions. Ten participants (71.42%) in the control group completed follow-up. The intervention was found to be acceptable by participants and the intervention nurse. Comparing with the control group, participants in the intervention group showed significant improvements in medication adherence (β = 0.26, 95%CI 0.12, 0.40, P < 0.001), medication knowledge (β = 4.43, 95%CI 1.11, 7.75, P = 0.009), and perceived necessity of medications (β = −2.84, 95%CI -5.67, −0.01, P = 0.049) at follow-up. Conclusions The nurse-led medication self-management intervention is feasible and acceptable among older people with multimorbidity. Preliminary results showed that the intervention may improve patients’ medication knowledge and beliefs and thus lead to improved adherence.

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