The lived experience of uncertainty in everyday life with MS

Nissen, Nina; Lemche, Jeanet; Reestorff, Camilla Møhring; Schmidt, Marianne; Skjerbæk, Anders Guldhammer; Skovgaard, Lasse; Stenager, Egon; Søgaard, Inge Gjerrild; Cour, Karen la

doi:10.1080/09638288.2021.1955302

Cited by 12 publications

(10 citation statements)

References 25 publications

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“…The choice of IU intervention is based on the fact that uncertainty tolerance is a fundamental element in promoting mental well-being outcomes such as reducing psychological distress and increasing quality of life. [ 23 26 ] In many ways, choosing to tolerate uncertainty as a goal is not common in classical interventions. Classical therapies often prioritize psychological distress (e.g., anxiety) and identify structures that may contribute to the problem, such as behavioral activation and cognitive assessments.…”

Section: Discussionmentioning

confidence: 99%

“…Moreover, as IU is the core of MS and cannot be considered as a result of depression or anxiety caused by the disease,[ 23 ] this intervention can be promoted as a universal, effective, integrated treatment exclusively for MS, like the Unified Protocol (UP) for the treatment of mood disorders, developed universally and exclusively for mood disorders. [ 25 ] The advantage of an integrated approach is that it allows specialists to achieve a single intervention for multiple patient problems rather than mastering different interventions.…”

Section: Discussionmentioning

confidence: 99%

“…[ 22 ] According to research, the core of psychological distress in MS patients is their inability to tolerate uncertainty. [ 23 ] This disability leads to behaviors that aim to increase control, such as avoiding anxious situations and mental rumination in relation to the source of stress. These strategies ultimately lead to increased anxiety and depression.…”

Section: Introductionmentioning

confidence: 99%

“…Due to the unpredictable nature of MS and the importance of inability to tolerate uncertainty in these patients,[ 23 ] the aim of this study was to evaluate the effectiveness of intervention focused on inability to tolerate uncertainty on psychological distress and quality of life in patients with multiple sclerosis.…”

Section: Introductionmentioning

confidence: 99%

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The effectiveness of group intervention focused on intolerance of uncertainty on psychological distress and quality of life in multiple sclerosis patients

Pirmoradi

Rahimi²,

Lavasani³

et al. 2023

Journal of Education and Health Promotion

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AIM AND BACKGROUND: Multiple sclerosis (MS) is a long-course incurable disease as well as an unknown prognosis causing patients to experience a variety of psychological outcomes. Meanwhile, inability to control the disease-related uncertainty leads to the use of maladaptive coping strategies, causing more psychological distress. This study investigated the effectiveness of intervention focused on the intolerance of uncertainty on psychological distress and quality of life in MS patients. MATERIALS AND METHODS: This research adopted a true experimental design. All phases of the study were conducted online due to the COVID-19 pandemic during 2021 in Tehran. The statistical population of the study was purposefully selected from among MS patients and was randomly assigned to three groups of 20: IU intervention and two control groups (cognitive behavioral therapy (CBT) and treatment as usual (TAU) groups). The study included pre-test, post-test, and follow-up stages. The outcome measures of the study included the Depression Anxiety Stress Scale (DASS-21) as well as Multiple Sclerosis Quality of Life-54 (MSQoL-54). Mixed analysis of variance was used to analyze the data. RESULTS: The results showed that IU intervention compared to CBT, is more effective on psychological distress (depression P = 0.006, anxiety P = 0.01, and stress P = 0.01) and quality of life ( P = 0.001) in MS patients. Nonetheless, IU-focused intervention is more effective than TAU on psychological distress (depression P = 0.0001, anxiety P = 0.0001, stress P = 0.0001) as well as quality of life ( P = 0.0001) in these patients. CONCLUSIONS: IU-based intervention can reduce psychological distress and improve quality of life of MS patients. Accepting uncertainty can reduce the anxiety and stress of MS patients which can increase the quality of life of these patients.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

The effectiveness of group intervention focused on intolerance of uncertainty on psychological distress and quality of life in multiple sclerosis patients

Pirmoradi

Rahimi²,

Lavasani³

et al. 2023

Journal of Education and Health Promotion

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“…Due to the heterogeneity of MS clinical presentation and the unpredictability of the disease course, patients commonly turn to the Internet and social media to better understand their disease. 3,4 It has been suggested how relevant it is to increase disease-related knowledge, since it is correlated with the decision-making process and better quality of life of people with MS. 2,5,6 The aim of the INFOSEEK-MS study is to evaluate the way people with MS search for information and the type and peculiarities of the information preferred by MS patients in Spain. We study other variables that may influence the information sources and search strategies.…”

Section: Introductionmentioning

confidence: 99%

Information-Seeking Strategies of People with Multiple Sclerosis in Spain: The INFOSEEK-MS Study

Higueras¹,

Salas²,

Meca-Lallana³

et al. 2022

PPA

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Purpose: Patients with multiple sclerosis (MS) are increasingly demanding access to reliable information regarding their disease. The objective of the INFOSEEK-MS study was to assess what are the strategies people with MS use when searching for information on their disease, including sources, frequency, reliability, and preferred content. Patients and Methods: A non-interventional, cross-sectional study was conducted. Patients with a diagnosis of MS according to the 2010 McDonald criteria were included. The InfoSeek questionnaire was used to assess patients' strategies when seeking information about the disease. Clinical characteristics and other variables, including disability, quality of life, fatigue, cognition, anxiety and depression, were analysed using the Expanded Disability Status Scale (EDSS), Multiple Sclerosis Impact Scale (MSIS-29), 5-item Modified Fatigue Scale (MFIS-5), Symbol Digit Modalities Test (SDMT), and Hospital Anxiety and Depression Scale (HADS), respectively. Results: Three hundred and two patients were studied (mean age: 42.3 ± 10 years, 64% female, mean disease duration: 9.6 ± 7.0 years, 90% with relapsing-remitting MS, and mean EDSS score: 2.6 ± 1.9). The internet (either via mobile or computer) is a frequently reported source of information. Lifestyle-related information (67.2%), research and emerging treatments (63.6%), symptom control (49.7%), sharing experiences with other patients (46.4%), and disease prognosis (46.4%) were the most searched topics. Neurologists and nurses were the most trusted source of information. Younger patients and higher SDMT scores were associated with all search resources (M = 37.7 and M = 49.97, respectively). The frequency of searches was related to the number of relapses (R 2 = 0.07), EDSS (R 2 = 0.14), MSIS-29 physical and psychological components (R 2 = 0.132) and inversely with depression (R 2 = 0.132). Conclusion:Although healthcare professionals are considered the most reliable source of information for people with MS, searching for information on the Internet is very frequent. An individualized information strategy considering the different factors involved is needed.

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“A Certainty for you Does Not Mean That it is a Certainty for Science”: A Phenomenological Analysis of Experiences of Uncertainty in Clinical Reasoning of Nurses in the Postanesthesia Care Unit

Cunha,

Pestana-Santos,

Lomba

et al. 2024

Journal of PeriAnesthesia Nursing

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The lived experience of uncertainty in everyday life with MS

Cited by 12 publications

References 25 publications

The effectiveness of group intervention focused on intolerance of uncertainty on psychological distress and quality of life in multiple sclerosis patients

The effectiveness of group intervention focused on intolerance of uncertainty on psychological distress and quality of life in multiple sclerosis patients

Information-Seeking Strategies of People with Multiple Sclerosis in Spain: The INFOSEEK-MS Study

“A Certainty for you Does Not Mean That it is a Certainty for Science”: A Phenomenological Analysis of Experiences of Uncertainty in Clinical Reasoning of Nurses in the Postanesthesia Care Unit

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