Resilience-Based Program for Support Partners of Persons With Multiple Sclerosis
| Status: | Active, not recruiting |
|---|---|
| Conditions: | Neurology, Neurology, Multiple Sclerosis |
| Therapuetic Areas: | Neurology, Other |
| Healthy: | No |
| Age Range: | 21 - 65 |
| Updated: | 12/20/2018 |
| Start Date: | May 23, 2018 |
| End Date: | May 31, 2019 |
A Pilot Single-Center Study of a Manualized Resilience-Based Telehealth Program for Support Partners of Persons With Multiple Sclerosis
This is a pilot feasibility study to examine the impact of providing a non-therapeutic
resilience-based coaching telehealth program to the Support Partners (SP) of persons with MS
(PwMS).
Cognitive difficulties are a prominent feature in PwMS and prove to be a challenge for PwMS
and the close family members that care for them. This study is a pilot telehealth program
that aims to address these needs and improve the overall well-being of adults with MS and
their Support Partners.
A manualized program was developed utilizing the previous research study conducted
literature, and the expertise and experience of the research study team. Funding was sought
and obtained for 30 pairs to participate in the pilot. The 6-session program will address
needs identified by this population and improve knowledge of cognition in PwMS.
Study Objectives:
Primary Objective:
To conduct an evaluation of the feasibility of the resilience program by examining:
1. Recruitment (i.e. willingness to participate in program)
2. Participation rates and attrition
3. Participant satisfaction of the program.
Secondary Objective (Support Partner):
To assess the potential long-term benefits of the program to Support Partners of PwMS.
Program benefits will be assessed using the following outcomes:
1. Sense of Competencies
2. Understanding of cognitive impairment in MS
3. Caregiver burden
4. Positive Emotions.
Secondary Objective (PwMS):
To assess the potential long-term benefits of the program to PwMS. Program benefits will be
assessed using the following outcomes:
1. Relationship Satisfaction
2. Perceived Support.
resilience-based coaching telehealth program to the Support Partners (SP) of persons with MS
(PwMS).
Cognitive difficulties are a prominent feature in PwMS and prove to be a challenge for PwMS
and the close family members that care for them. This study is a pilot telehealth program
that aims to address these needs and improve the overall well-being of adults with MS and
their Support Partners.
A manualized program was developed utilizing the previous research study conducted
literature, and the expertise and experience of the research study team. Funding was sought
and obtained for 30 pairs to participate in the pilot. The 6-session program will address
needs identified by this population and improve knowledge of cognition in PwMS.
Study Objectives:
Primary Objective:
To conduct an evaluation of the feasibility of the resilience program by examining:
1. Recruitment (i.e. willingness to participate in program)
2. Participation rates and attrition
3. Participant satisfaction of the program.
Secondary Objective (Support Partner):
To assess the potential long-term benefits of the program to Support Partners of PwMS.
Program benefits will be assessed using the following outcomes:
1. Sense of Competencies
2. Understanding of cognitive impairment in MS
3. Caregiver burden
4. Positive Emotions.
Secondary Objective (PwMS):
To assess the potential long-term benefits of the program to PwMS. Program benefits will be
assessed using the following outcomes:
1. Relationship Satisfaction
2. Perceived Support.
Support Partner Inclusion Criteria
In order to be eligible to participate in this study as a Support Partner, an individual
must meet all of the following criteria:
1. Provide signed and dated informed consent form.
2. Willing to comply with all study procedures and be available for the duration of the
study.
3. Male or female, aged 21 to 65 years.
4. Able to speak, read, and understand English.
5. Reside in the U.S.
6. Live with PwMS who is willing to participate in the study and who meets all of the
eligibility criteria.
7. Has access to a telephone and computer or tablet with a stable internet connection as
well as a web camera in a private setting.
8. Provide identification that meets the New Jersey Telemedicine Act of 2017.
9. Demonstrate basic ability to use a computer by completing the electronic ICF
completion process, which requires use of a teleconferencing platform similar to what
will be used during the intervention.
Support Partner Exclusion Criteria
A Support Partner who meets any of the following criteria will be excluded from
participation in this study:
1. Professional healthcare worker (e.g., physician, psychologist, social worker, case
manager, nurse, home healthcare aide).
2. Dementia, including Alzheimer's and Lewy Bodies Dementia, as screened by CORE Therapy
Assessment Form v.2.
3. Reports that PwMS partner is diagnosed with dementia, including Alzheimer's and Lewy
Bodies Dementia.
4. Self-report of any change in medication treating bipolar disorder and any psychiatric
condition, including a change in dosage, in the previous 6 months and as screened by
CORE Therapy Assessment Form v.2.
5. Current suicidal intent as screened by CORE-OM and CORE Therapy Assessment Form v.2.
6. Currently participating in couple or family therapy.
7. An intellectual or developmental disability as screened by CORE Therapy Assessment
Form v.2.
8. Evidence of significant brain injury or medical condition leading to cognitive
impairment (e.g. accident, tumor) as screened by CORE Therapy Assessment Form v.2.
9. Anything that would place the individual at increased risk or preclude the
individual's full compliance with or completion of the study.
PwMS Inclusion Criteria
In order to be eligible to participate in this study as a Person with MS, an individual
must meet all of the following criteria:
1. Provide signed and dated informed consent form.
2. Willing to comply with all study procedures and be available for the duration of the
study.
3. Male or female, aged 21 to 65 years.
4. Self-report of Multiple Sclerosis including the date of the diagnosis (month and year)
and the name of the diagnosing physician.
5. Able to speak, read, and understand English.
6. Reside in the U.S.
7. Cognitive difficulty as screened by the PDQ Cognitive Function (score greater than
20).
8. Live with Support Partner who meets all study eligibility criteria.
9. Has access to a telephone and computer or tablet with a stable internet connection as
well as a web camera in a private setting.
10. Provide identification that meets the New Jersey Telemedicine Act of 2017.
11. Demonstrate basic ability to use a computer by completing the electronic ICF
completion process, which requires use of a teleconferencing platform similar to what
will be used during the intervention.
PwMS Exclusion Criteria
A PwMS who meets any of the following criteria will be excluded from participation in this
study:
1. Dementia, including Alzheimer's and Lewy Bodies Dementia, as screened by CORE Therapy
Assessment Form v.2.
2. Self-report of any change in medication treating bipolar disorder and any psychiatric
condition, including a change in dosage, in the previous 6 months and as screened by
CORE Therapy Assessment Form v.2.
3. Current suicidal intent as screened by CORE-OM and CORE Therapy Assessment Form v.2.
4. Currently participating in couple or family therapy.
5. Diagnosis of intellectual or developmental disability as screened by CORE Therapy
Assessment Form v.2.
6. Significant brain injury or medical condition leading to cognitive impairment (e.g.
accident, tumor) as screened by CORE Therapy Assessment Form v.2.
7. Self-report of any change in medication treating MS, including a change dosage, in the
previous 3 months.
8. Anything that would place the individual at increased risk or preclude the
individual's full compliance with or completion of the study.
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