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Multiple sclerosis

The role of the clinical nurse specialist multiple sclerosis, the patients' and families' and carers' perspective: An integrative review

Background: MS is a common, neurological disease and it's unpredictable, progressive disabling nature can have a devastating effect on patients, their families' and carers.

Wed, 02/26/2020 - 12:37

The caring experience in multiple sclerosis: Caregiving tasks, coping strategies and psychological well‐being

Informal caregivers play a crucial role in supporting persons with multiple sclerosis (MS), a neurodegenerative disease resulting in progressive worsening of physical and cognitive functioning. While research extensively showed that caregiving workload can be perceived as burdensome, little attention was devoted to the relation connecting workload and caregivers' well‐being. Building on previous literature on stress and coping, the aim of this study was to test the mediational role of coping between caregivers' tasks and well‐being.

Sun, 02/09/2020 - 14:56

A concerns report survey of physical activity support needs of people with moderate-to-severe MS disability and family caregivers

Purpose: To identify the most pressing needs for community resources to support physical activity participation, determinants of perceived need, and barriers to co-participation in physical activity among people with multiple sclerosis (MS) who have moderate-to-severe disability and the family caregivers providing assistance to such individuals. Methods: Seventy-eight people with MS and 46 family caregivers participated in this cross-sectional survey study, guided by the Concerns Report Methodology.

Wed, 01/22/2020 - 11:06

Quality of Life and Emotional Strain in Caregivers of Patients with Multiple Sclerosis

Background and Purpose: This study aimed was to measure the quality of life, fatigue, stress, and depression in a consecutive sample of caregivers of multiple sclerosis (MS) patients.; Methods: We included data from 131 consecutive caregivers of MS patients [age=51.2±12.8 years (mean±SD), males=53.4%, duration of caregiving=10.0±6.3 years].

Wed, 06/26/2019 - 15:47

Correlating the Physical Activity Patterns of People with Moderate to Severe Multiple Sclerosis Disability and Their Family Caregivers

Purpose: People with multiple sclerosis (PwMS) and their family caregivers often react to the impact of the disease as an interdependent dyad. The aim of this exploratory study was to examine interdependence in the physical activity (PA) patterns of dyads affected by moderate to severe MS disability. Method: A total of 15 pairs of PwMS and their family caregivers wore accelerometers for 7 days. By collecting data simultaneously from both partners, we tested interdependence using the dyad as the unit of analysis.

Tue, 05/28/2019 - 16:33

“It’s just horrible”: a qualitative study of patients’ and carers’ experiences of bowel dysfunction in multiple sclerosis

Around 50% of people with multiple sclerosis (MS) experience neurogenic bowel dysfunction (constipation and/or faecal incontinence), reducing quality of life and increasing carer burden. No previous qualitative studies have explored the experiences of bowel problems in people with MS, or the views of their family carers. This study sought to understand ‘what it is like’ to live with bowel dysfunction and the impact this has on people with MS and carers.

Tue, 05/14/2019 - 11:14

The Valuation of Informal Care in Cost-of-Illness Studies: A Systematic Review

There is a growing interest in incorporating informal care in cost-of-illness studies as a relevant part of the economic impact of some diseases. The aim of this paper was to review the recent literature valuating the costs of informal care in a group of selected diseases from 2005 to 2015. We carried out a systematic review on the economic impact of informal care, focusing on six selected diseases: arthritis or osteoarthritis, cancer, dementia, mental diseases, multiple sclerosis and stroke. We selected 91 cost-of-illness articles.

Mon, 04/08/2019 - 16:01

Our disease: a qualitative meta-synthesis of the experiences of spousal/partner caregivers of people with multiple sclerosis

Purpose: To provide a unique and conceptually comprehensive account of the lived experiences of caregiving spouses/partners of people with multiple sclerosis, which can be used to better enable health professionals to provide appropriate support services. Method: A systematic review of qualitative studies reporting the experiences of caregiving spouses/partners was conducted. Relevant articles were identified and analysed using a meta‐ethnographic synthesis.

Fri, 03/29/2019 - 11:37

Participant perspectives of a home-based palliative approach for people with severe multiple sclerosis: A qualitative study

Background: We performed a qualitative study to investigate the experiences of participants in a multicentre randomized controlled trial on a home-based palliative approach (HPA) for adults with severe multiple sclerosis (MS) and their caregivers. Our aim was to explore the strengths and challenges of the intervention, and circumstances that may have influenced its efficacy.; Methods: Participants to the qualitative study were the patients, their caregivers, patient referring physicians, and the teams who delivered the HPA intervention.

Thu, 01/31/2019 - 12:54

Informal Caregivers' Experiences of Caring of Multiple Sclerosis Patients: A Qualitative Study

Background: Approximately one-third of people suffering from multiple sclerosis (MS) need long-term care by their families, however, we know little of their experiences. Exploring these experiences can be a guideline to improve the quality of care for MS patients. The goal of this study is to explore informal caregivers' experiences regarding care of MS patients. Materials and Methods: A qualitative content analysis method was used to conduct this study in 2014.

Wed, 10/03/2018 - 13:03