Caregivers Caregiver Burden Quality of life Occupational Stress Amyotrophic lateral sclerosis
Conditions
Interventions
Self-care program for caregivers of patients with amyotrophic lateral sclerosis.
Educational booklets will be delivered to all participants, the study will last for 6 weeks, with initial assessment, f
Sponsors
Universidade Federal do Rio Grande do Norte
Coordenação de Aperfeiçoamento de Pessoal de Nível Superior
Eligibility
Age
18 Years to No maximum
Inclusion criteria
Inclusion criteria: Be an informal caregiver of a person diagnosed with ALS, be over 18 years old. Not having cognitive impairment to understand the course and the term of clarification. Being a caregiver of people with ALS, without other neurological disorders, has to be literate, with complete elementary education.
Exclusion criteria
Exclusion criteria: If they present any pathology that prevents them from performing physical activity. Caregivers in the first trimester of pregnancy. Or, are taking psychiatric medication.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The quality of life of caregivers will be assessed by the WHOQOL-bref questionnaire (short version of the WHOQOL-100 - World Health Organization Quality of Life-100). The questionnaire consists of 26 questions, the first question refers to quality of life in general and the second to satisfaction with one's own health. The other 24 are divided into the physical, psychological, social relationships and environment domains, being an instrument that can be used both for healthy populations and for populations affected by health problems and chronic diseases.;The caregiver burden will be assessed by the Zarit Scale, which includes 22 questions ranging from 0 to 4, according to the intensity of the response, with a maximum score of 88 points. The scale addresses the caregiver's relationship with the patient and the assessment of caregivers' health conditions, in addition to psychological well-being, financial conditions and social life. A higher score equates to a greater burden on the caregiver. | — |
Secondary
| Measure | Time frame |
|---|---|
| To discover the existence of pain, the McGill Pain Questionnaire will be applied, which is an instrument consisting of 78 descriptors (words that qualify pain), organized into 4 categories (sensory, affective, evaluative and mixed) and 20 subcategories.;Stress will be assessed using the Perceived Stress Scale, which has 14 questions with response options ranging from zero to four (0=never; 1=almost never; 2=sometimes; 3=almost always 4=always). The total of the scale is the sum of the scores of these 14 questions and the scores can range from zero to 56, where the higher the score, the higher the stress level.;In the characterization of depressive symptoms, the Beck Depression Inventory (BDI) will be used. The original scale consists of 21 items, including symptoms and attitudes, whose intensity ranges from 0 to 3. The higher the scale score, the higher the level of depression. | — |
Countries
Brazil
Contacts
Public ContactEMILIA E SILVA
Outcome results
None listed