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Uncertainty in Illness in Palliative Care: an Intervention for Family Caregivers

Not Applicable
Conditions
Quality of Life
Advanced Cancer
Family Members
Uncertainty
Interventions
Other: Nursing intervention
Registration Number
NCT03518970
Lead Sponsor
Universidad Nacional de Colombia
Brief Summary

Background: The increase of chronic diseases has reached an increase in the suffering of advanced diseases and an inability of health care systems to give access to the population that suffers them. In this context are people with advanced cancer who are in palliative care and the family caregivers. Uncertainty in illness in palliative care and quality of life are two concepts that are altered in the patient's family caregiver in palliative care. Objective: to examine the feasibility and acceptability of a nursing intervention to reduce the uncertainty in illness and improve the quality of life of family caregivers of patients with cancer in palliative care. Methodology: Phase II clinical trial, the ratio of recruitment, follow-up of participants as well as satisfaction with the intervention will be evaluated as primary outcomes. As secondary outcomes, the possible effect of the intervention on the uncertainty in illness and the quality of life of the family caregiver will be evaluated. This study will be carry out in a health care institution in Medellin-Colombia.

Detailed Description

Not available

Recruitment & Eligibility

Status
UNKNOWN
Sex
All
Target Recruitment
60
Inclusion Criteria
  • Being the person responsible for the care of the person in palliative care most of the time
  • Being over 18 years of age;
  • Caring for a person who has a diagnosis of cancer stage IV, who is receiving palliative treatment for the disease and has an expectation longer than one month of life (determined by the physician)
  • Being able to communicate in Spanish.
Exclusion Criteria
  • Being included in another institutional study of an educational nature
  • Not knowing how to read
  • Caring for another person with cancer before
  • Have a significant cognitive disability

Study & Design

Study Type
INTERVENTIONAL
Study Design
PARALLEL
Arm && Interventions
GroupInterventionDescription
Nursing interventionNursing interventionThe experimental group will receive the Nursing intervention to reduce uncertainty in illness and increase quality of life in family caregivers of patients with cancer in palliative care
Primary Outcome Measures
NameTimeMethod
RecruitmentThis variable will be measured during the process of recruitment of participants in the study that will be during a period of six months.

this variable is defined as the proportion of eligible participants who agree to participate in the study, within the total of eligible participants. This variable will be measured with the Participant Recruitment Format.

Follow-upthis variable will be measured with the participants who complete the study, it will be measured with the participants after the intervention has finished within the framework of the study that will be six months.

This variable is defined as the proportion of participants who entered the study and remained in the study until the post-intervention measurement within the total number of participants in the study. This variable will be measured with the Participation and Follow-up Format of the Participant.

Acceptabilitythis variable will be measured with the participants who complete the study in the intervention group. It will be measured after the intervention within the intervention group in the frame of execution of the study that will be six months.

Refers to the perception that participants have of the intervention to address the problem presented in terms of being reasonable, adequate and convenient for its application in daily life and to meet their expectations. This variable will be measured with the Participant Satisfaction Questionnaire.

Secondary Outcome Measures
NameTimeMethod
Quality of lifethis variable will be measure before and after the intervention. The time frame of this measurement will be first at day 1 before the intervention and 5 to 7 days after the intervention

it is understood as the subjective perception that each subject has regarding their well-being. The scale measures the quality of life of the family caregiver of the person with cancer. In its original version it has a test-retest consistency of r = .89 and an internal consistency with an alpha value of 0.69. The scale has four dimensions, physical, psychological, social, spiritual well-being. The scale has a total of 37 items that are scored on a scale of 0 to 10, being 0 the worst result and 10 the best result. In its Spanish version it has a test-retest reliability of 0.88 and an internal consistency of 0.80.

Uncertainty in illnessthis variable will be measure before and after the intervention. The time frame of this measurement will be first at day 1 before the intervention and 5 to 7 days after the intervention

It is a cognitive state that is created when the individual can not adequately structure or categorize an event related to the disease due to insufficient signals to do so.

the investigators will use the MISHEL UNCERTAINTY IN ILLNESS SCALE - FAMILY MEMBER FORM develop by Merle Mishel RN, PhD. This scale has 31 items with response options from 1 to 5, ranging from strongly disagree to strongly agree. This instrument in its original version has a structure of two factors. The first, Ambiguity with 19 items. The second, Complexity with 12. For populations with cancer the scale reports an alpha coefficient of between 0.77 to 0.91. The scale has a score of 31 to 150 points where the higher the score, the higher the level of uncertainty. The scale has evidence of transcultural adaptation and validity for the Colombian context.

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