Mindfulness and Support Group to Improve Patient and Caregiver Burden in Cirrhosis
| Status: | Completed |
|---|---|
| Conditions: | Gastrointestinal |
| Therapuetic Areas: | Gastroenterology |
| Healthy: | No |
| Age Range: | 21 - 80 |
| Updated: | 1/13/2017 |
| Start Date: | June 2016 |
| End Date: | January 2017 |
Chronic liver disease and cirrhosis pose a huge financial burden to the health care system.
This includes the cost of medical care, employment, disability-related issues and reduced
survival. Specifically, the complication of cirrhosis known as hepatic encephalopathy (HE)
especially hinders quality of life, the performance of activities of daily living and the
ability to drive a motor vehicle in affected subjects. The hidden burden to family members
and caregivers of these subjects, however, has been all but ignored to date. Evaluation of
family members and caregivers is essential. The burden of caring for someone with liver
disease can result in added cost for health care for family members and caregivers and is
typically not recognized. The importance of the burden to families and family members or
caregivers resulting from other neurological diseases such as Alzheimer's has been well
evaluated and specific strategies to educate and counsel family members and caregivers have
been elaborated. This is important because as the findings of this study have emerged, we
have found that both Veterans and non-Veterans with cirrhosis and HE have a poor quality of
life, worse socio-economic status and place a significantly higher burden on their family
members or caregivers than those without HE
This includes the cost of medical care, employment, disability-related issues and reduced
survival. Specifically, the complication of cirrhosis known as hepatic encephalopathy (HE)
especially hinders quality of life, the performance of activities of daily living and the
ability to drive a motor vehicle in affected subjects. The hidden burden to family members
and caregivers of these subjects, however, has been all but ignored to date. Evaluation of
family members and caregivers is essential. The burden of caring for someone with liver
disease can result in added cost for health care for family members and caregivers and is
typically not recognized. The importance of the burden to families and family members or
caregivers resulting from other neurological diseases such as Alzheimer's has been well
evaluated and specific strategies to educate and counsel family members and caregivers have
been elaborated. This is important because as the findings of this study have emerged, we
have found that both Veterans and non-Veterans with cirrhosis and HE have a poor quality of
life, worse socio-economic status and place a significantly higher burden on their family
members or caregivers than those without HE
The initial intake visit will include an overall assessment of the situation with the
subject and family members or caregivers by the study physician and description of the group
therapy. If the subjects and family members or caregivers want to continue, they will be
asked to visit with the psychologist individually (subject first, then family member or
caregiver, then both) in order to confirm their insight into the disease process and assess
their readiness and appropriateness for the group therapy.
All concerns regarding confidentiality and details to be discussed during the group therapy
sessions will be reiterated to subjects and family members or caregivers individually. They
can then choose to participate or not. If they choose not to participate, they will be seen
in 1- 3 months to complete the all tests / questionnaires detailed as in the measurements
section
Subjects and family members or caregivers agreeing to participate in group therapy will be
required to attend four weekly group therapy sessions in order for them to be considered as
group therapy recipients. If they choose to terminate the group at any time, they will be
free to do so and will be asked to complete all tests / questionnaires detailed as in the
measurements section
GROUP INTERVENTION FORMAT:
Group therapy sessions will be conducted on a weekly basis over a four week period. The
group therapy sessions will last approximately one hour. The group will not have a rolling
admission meaning members will be required to attend all scheduled group sessions.
Measurements used:
- QOL assessment using Sickness Impact Profile (a 136 item questionnaire)
- Sleep assessment using Pittsburgh Sleep Quality Questionnaire (PQSI) and Epworth
Sleepiness Scale (ESS)
- Assessment of Depression and Anxiety using the Beck Questionnaires
Structure of the Groups:
Each group will begin with a review of what was learned in the group before and a review of
the concrete goals/homework that the participants set from the last group. The group can
work together to identify barriers and strategies.
Second portion of the group will focus on acquiring specific skills. These skills include
Qigong (gentle movements), body scan, progressive relaxation, and loving-kindness meditation
At the conclusion of the session, subjects, family members or caregivers core skills to be
targeted as detailed below will be evaluated by the psychologists running the group.
Core Skills to be Targeted:
I. Stress Management II. Dealing with Depression III. Adjusting to Anxiety IV. Family Health
and Changes in Roles
subject and family members or caregivers by the study physician and description of the group
therapy. If the subjects and family members or caregivers want to continue, they will be
asked to visit with the psychologist individually (subject first, then family member or
caregiver, then both) in order to confirm their insight into the disease process and assess
their readiness and appropriateness for the group therapy.
All concerns regarding confidentiality and details to be discussed during the group therapy
sessions will be reiterated to subjects and family members or caregivers individually. They
can then choose to participate or not. If they choose not to participate, they will be seen
in 1- 3 months to complete the all tests / questionnaires detailed as in the measurements
section
Subjects and family members or caregivers agreeing to participate in group therapy will be
required to attend four weekly group therapy sessions in order for them to be considered as
group therapy recipients. If they choose to terminate the group at any time, they will be
free to do so and will be asked to complete all tests / questionnaires detailed as in the
measurements section
GROUP INTERVENTION FORMAT:
Group therapy sessions will be conducted on a weekly basis over a four week period. The
group therapy sessions will last approximately one hour. The group will not have a rolling
admission meaning members will be required to attend all scheduled group sessions.
Measurements used:
- QOL assessment using Sickness Impact Profile (a 136 item questionnaire)
- Sleep assessment using Pittsburgh Sleep Quality Questionnaire (PQSI) and Epworth
Sleepiness Scale (ESS)
- Assessment of Depression and Anxiety using the Beck Questionnaires
Structure of the Groups:
Each group will begin with a review of what was learned in the group before and a review of
the concrete goals/homework that the participants set from the last group. The group can
work together to identify barriers and strategies.
Second portion of the group will focus on acquiring specific skills. These skills include
Qigong (gentle movements), body scan, progressive relaxation, and loving-kindness meditation
At the conclusion of the session, subjects, family members or caregivers core skills to be
targeted as detailed below will be evaluated by the psychologists running the group.
Core Skills to be Targeted:
I. Stress Management II. Dealing with Depression III. Adjusting to Anxiety IV. Family Health
and Changes in Roles
Patients
Inclusion Criteria:
1. Cirrhosis proven by radiology, endoscopy (esophageal varices present) or biopsy
2. Able to give informed consent as determined by the study staff
3. Have a family member or caregiver who lives with them that is willing to participate
Exclusion Criteria:
1. Unable to give consent
2. Active psychosis
3. Acute suicidal ideation
4. No identified family member or caregiver
Caregivers/Family members:
Inclusion Criteria:
1. Sharing living space with cirrhotic patient for at least 3 years
2. Able and willing to participate in the groups
Exclusion Criteria:
1. Unfamiliar with patient's routines and does not live in the same space
2. Unwilling to consent or participate
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