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The Parent Experience of Caring for a Child with Mitochondrial Disease

Introduction: Mitochondrial disease is a spectrum of progressive genetic disorders resulting from dysfunctions of cellular metabolism in the mitochondria that greatly compromise the lives of affected individuals, who are often children.

Thu, 01/05/2023 - 18:31

Traumatic brain injury caregivers: A qualitative analysis of spouse and parent perspectives on quality of life

The objective of this qualitative study was to examine how family caregivers of individuals with traumatic brain injury (TBI) describe their quality of life in the context of their caregiving role. Fifty-two caregivers of adults with moderate or severe TBI (n = 31 parents,n = 21 partners/spouses; 77% female; mean age = 57.96 years, range = 34–78 years) were recruited from three data collection sites to participate in focus groups. Thematic content analysis was used to identify two main meta-themes: Caregiver Role Demands and Changes in Person with TBI.

Tue, 10/23/2018 - 11:56

Silent, invisible and unacknowledged: experiences of young caregivers of single parents diagnosed with multiple sclerosis

The study's rationale: Most people diagnosed with multiple sclerosis (MS) choose to live at home without known consequences for their children.

Aims and objectives: To study the personal experience of being a young caregiver of a chronically ill parent diagnosed with MS.

Methodological design and justification: Phenomenology was the methodological approach of the study since it gives an inside information of the lived experience.

Thu, 07/20/2017 - 15:20

Anxiety and depressive symptoms in caregivers of multiple sclerosis patients: The role of information processing speed impairment

Background: Multiple sclerosis (MS) patients have high rates of complications and disability, including cognitive impairment, that often, impact on caregivers' emotional health. Clarification may help identify improved supportive strategies for both caregivers and patients.

Objective: We aimed to analyse whether MS domain-specific cognitive impairment can influence the severity of psychiatric symptoms of MS caregivers.

Thu, 07/20/2017 - 15:18

An emotive subject: insights from social, voluntary and healthcare professionals into the feelings of family carers for people with mental health problems

Caring for people with mental health problems can generate a whole range of positive and negative emotions, including fear, disbelief, guilt and chaos as well as a sense of purpose, pride and achievement. This paper explores the emotions of family carers from the perspectives of social, voluntary and healthcare professionals. Sixty-five participants were interviewed, the sample included directors, managers and senior staff from social, voluntary and healthcare organisations. Participants were encouraged to talk in detail about their understanding of the emotions of family carers.

Thu, 07/20/2017 - 15:10

Changes in sexuality and intimacy after the diagnosis and treatment of cancer: the experience of partners in a sexual relationship with a person with cancer

Changes in sexuality and intimacy after cancer were examined using open-ended questionnaire responses with 156 informal carers who were partners of a person with cancer. Interviews were conducted with 20 participants to examine changes in depth. Seventy-six percent of partners of a person with "nonreproductive" cancer types and 84% of partners caring for a person with cancer involving "reproductive" sites reported an impact on their sexual relationship. Cessation or decreased frequency of sex and intimacy was reported by 59% of the women and 79% of the men.

Thu, 07/20/2017 - 15:09