‘It’s the unknown’ – understanding anxiety: from the perspective of people with multiple sclerosis

Butler, Ellen; Thomas, R. Joseph; Carolan, Alison; Silber, Eli; Chalder, Trudie

doi:10.1080/08870446.2018.1541989

Cited by 15 publications

(6 citation statements)

References 48 publications

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“…This sample size is larger than generally considered necessary for scrutinising common perceptions. However, it optimised our ability to collect rich data from different perspectives and is comparable to similar studies 61,62 .…”

Section: Participant Recruitmentmentioning

confidence: 81%

The experience of Anxiety for people with Parkinson’s disease

Blundell,

Grover,

Stott

et al. 2023

npj Parkinsons Dis.

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Anxiety is a common non-motor symptom of Parkinson’s disease (PD) associated with increased disability and reduced quality of life. However, anxiety is poorly understood, underdiagnosed, and undertreated. To date, little research has explored how anxiety is experienced by patients themselves. This study explored the experience of anxiety for people with Parkinson’s (PWP) to inform future research and interventions. Semi-structured interviews with 22 PWP (aged 43-80, 50% female) were conducted and analysed using inductive thematic analysis. Four main themes were extracted: conceptualising anxiety; anxiety and the body; anxiety and social identity; and coping with anxiety. Sub-themes revealed inconsistent perceptions: anxiety was in body and mind, part of disease and human nature, part of self-identity and a threat to it. The symptoms described were diverse. Many perceived their anxiety as more incapacitating than motor symptoms or capable of amplifying them, and described that anxiety restricted their lifestyle. All perceived anxiety as connected to PD, and ultimately persistent: dominant aspirations were coping and acceptance rather than cures, with medications strongly resisted. Findings highlight the complexity and high importance of anxiety for PWP. Implications for therapeutic approaches are discussed.

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Section: Participant Recruitmentmentioning

confidence: 81%

The experience of Anxiety for people with Parkinson’s disease

Blundell,

Grover,

Stott

et al. 2023

npj Parkinsons Dis.

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“…Patient preference to treatment options can be affected by the attribute-based communication used by HCPs. 62 Reducing patients' distress is particularly important, since negative emotional responses in PwMS can persist over the long term 25 and potentially causes a range of negative impacts, including on QoL, 12,25,63 patients' sense of self-identity, and adding to the disruption to other aspects of their lives. 8,23,64 Chronic illness has long been known to cause biographical disruption (the way that illness disrupts the imaged future that a patient had previously pictured).…”

Section: Discussionmentioning

confidence: 99%

“…7,8 Continuing stigmatization of MS may exacerbate the difficulties 9,10 and may worsen the disease, which can result in a vicious cycle. 11,12 Collaborations between PwMS and healthcare professionals (HCPs) show that enhanced patient understanding of MS disease progression and engagement in care can contribute to improved disease management and quality of life (QoL). 13,14 However, there is little qualitative evidence regarding patient perspectives on MS disease progression.…”

Section: Introductionmentioning

confidence: 99%

Disease Progression in Multiple Sclerosis: A Literature Review Exploring Patient Perspectives

Celius¹,

Thompson²,

Pontaga³

et al. 2021

PPA

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“…There are studies showing that depression and anxiety levels do not change in patients with detrusor overactivity compared to those with normal detrusor activity [14] . It has been reported that the severity of anxiety increases in MS patients after diagnosis compared to the predisease period [16] . Fatigue and other symptoms, comorbid disease, anxiety medications, childhood trauma, and self-esteem, self-efficacy, and stress coping issues are conditions that cause depression [17] .…”

Section: Luts and Their Relationship With Quality Of Lifementioning

confidence: 98%

The Effect of Lower Urinary Tract Symptoms on Quality of Life and Complementary Therapies for Patients with Multiple Sclerosis

Özen

Polat

2023

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Multiple sclerosis patients face many physiological, psychological, and social problems depending on the type and course of the disease. One of the physiological problems is lower urinary tract symptoms (LUTS). Problems such as urinary incontinence, frequent urination, sudden urination, inability to urinate, inability to empty the bladder completely affect the daily life of the patients. These patients may avoid social interaction because of frequent urination and incontinence. Patients with multiple sclerosis refrain from shopping, meeting with friends, and other social activities due to urinary problems. In addition, they also restrict their fluid intake because they urinate frequently. Urinary tract infections associated with low fluid intake and inability to urinate are more common in multiple sclerosis patients than in the normal population. These problems restrict the patient’s life and negatively affect their quality of life. These complaints can be minimized by bladder training, pelvic floor muscle exercises, nerve stimulation, or use of urinary catheter in order to eliminate these problems and improve the quality of life of the patients. While bladder training prolongs the urination intervals of patients, pelvic floor muscle exercises reduce urinary incontinence by strengthening the muscles. Neuromodulation reduces these problems by suppressing nerve impulses. Catheters are important for patients who cannot urinate or have urinary incontinence. Urinary incontinence, retention, and urinary infection can be reduced by using catheters.

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‘It’s the unknown’ – understanding anxiety: from the perspective of people with multiple sclerosis

Cited by 15 publications

References 48 publications

The experience of Anxiety for people with Parkinson’s disease

The experience of Anxiety for people with Parkinson’s disease

Disease Progression in Multiple Sclerosis: A Literature Review Exploring Patient Perspectives

The Effect of Lower Urinary Tract Symptoms on Quality of Life and Complementary Therapies for Patients with Multiple Sclerosis

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