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Multiple sclerosis

Abuse and neglect of people with multiple sclerosis: A survey with the North American Research Committee on Multiple Sclerosis (NARCOMS)

Background: An estimated 100,000 Americans with advanced multiple sclerosis (MS) are at risk of mistreatment, yet we lack national prevalence data on abuse and neglect. Our objective was to determine the incidence and prevalence of caregiver abuse and neglect among U.S. adults with advanced MS.

Tue, 01/17/2023 - 08:56

Supporting families and carers of people living with multiple sclerosis: a rapid realist review and realist evaluation

Background: Supportive interventions are needed for the family and carers of people with multiple sclerosis. Methods: A rapid realist review and realist evaluation explored what helps, who it helps, when and how. Literature analysis was synthesised with a thematic analysis of qualitative interviews and focus groups with 49 family and carers of people with multiple sclerosis.

Thu, 09/01/2022 - 12:12

Self-Care for Caregivers of Individuals Living With Multiple Sclerosis: Testing Mediation Models of Caregiver Stress, Health, and Self-Care

Background: Individuals with Multiple Sclerosis (MS) often receive home health care, yet little research investigates the health of informal caregivers of individuals with MS. Methods: We tested a mediation model in which associations between caregiver stress and caregiver self-care were explained by each of four a priori caregiver health factors—caregiver negative affect, pain, tiredness, and functional limitations.

Sat, 06/18/2022 - 20:37

Secondary Impacts of COVID-19 Pandemic in Fatigue, Self-Compassion, Physical and Mental Health of People with Multiple Sclerosis and Caregivers: The Teruel Study

Background: The secondary impacts of the COVID-19 pandemic are distress triggers and risk factors for mental health. Conversely, self-compassion skills and compassionate thoughts/behaviors towards suffering may contribute to their alleviation. Both psychological constructs are interrelated in life-threatening diseases such as multiple sclerosis (MS).

Sat, 06/18/2022 - 16:15

Profiles of eHealth Adoption in Persons with Multiple Sclerosis and Their Caregivers

Background: Persons with multiple sclerosis (pwMS) are often characterized as ideal adopters of new digital healthcare trends, but it is worth thinking about whether and which pwMS will be targeted and served by a particular eHealth service like a patient portal. With our study, we wanted to explore needs and barriers for subgroups of pwMS and their caregivers when interacting with eHealth services in care and daily living.

Sun, 06/12/2022 - 22:01

The Effectiveness of Group Hope Therapy Training on the Quality of Life and Meaning of Life in Patients with Multiple Sclerosis and Their Family Caregivers

Objective: Multiple sclerosis is a chronic, progressive neurological disease that, due to its special nature, has various physical and mental influences on the patients and their family's lives, decreasing the quality of life and threatening the meaning of life. The purpose of the present study was to evaluate the effectiveness of the group hope therapy training on the quality and the meaning of life in patients with multiple sclerosis and their family caregivers. Method: This quasi-experimental study was performed using pretest-posttest and control group.

Sat, 02/12/2022 - 16:29

Informal carers' experiences of caring for someone with Multiple Sclerosis: A photovoice investigation

Objectives: This study explores the lived experiences of carers of people with Multiple Sclerosis (MS), specifically in relation to their quality of life (QoL), through the use of images and narratives, with the aim of gaining a nuanced insight into the complex nature of QoL in the MS caregiving context.; Design: Real-time qualitative design using the photovoice method.; Methods: Twelve MS carers (aged 30-73 years) took photographs of objects/places/events that represented enhancement or compromise to their QoL and composed written narrativ

Fri, 07/23/2021 - 16:37

Factors Influencing Health-Related Quality of Life of Patients with Multiple Sclerosis and Their Caregivers

Background: Only a few studies have been done focusing on the quality of life (QoL) of patients with multiple sclerosis (MS) as well as their family members. The aim of our research was to determine the factors that influence the QoL of MS patients in advanced stage of disease and their caregivers. Methods: The sample of the cross-sectional study included 153 patients with MS and 74 caregivers.

Mon, 03/22/2021 - 12:00

How primary caregivers of individuals with multiple sclerosis cope with social isolation: a grounded theory study in an Iranian context

Background/aims Multiple sclerosis is a progressive neurological disease that can significantly impact the psychosocial aspects of primary caregivers of individuals with multiple sclerosis. This study explored the process of social isolation among primary caregivers of individuals with multiple sclerosis in Kerman, Iran. Methods A grounded theory approach was employed to explore the various aspects of social isolation.

Fri, 12/11/2020 - 10:08

The Experiences of Multiple Sclerosis Patients' Family Caregivers at the First Hospitalization of Their Patients: A Qualitative Study

Background and Aim: Being diagnosed with multiple sclerosis is usually accompanied by emotional trauma for patients and their families. The chronic, progressive, and unpredictable nature of the disease spells the patients' long-term need for care from their families. As soon as a diagnosis is made, family caregivers are faced with many challenges. The present study aims to identify family caregivers' experiences at the first hospitalization of their patients.

Mon, 11/30/2020 - 09:25

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