Pilot Study of the Living With Hope Program for Family Caregivers of Persons With Dementia Residing in Long Term Care

NCT02038192 | Completed

• 1 other identifier: Pro00041954
• Study Type: interventional
• Target: 21
• Locations: 1 country
• Sites: 1

Brief Summary

Hope is important for family/friends of persons with dementia residing in Long Term Care Facilities. Our research team has developed a program (Living with Hope) to increase hope and quality of life of family caregivers. The Living with Hope Program involves a) viewing the Living with Hope film which features caregivers of persons with dementia describing their hope and b) a hope activity entitled "Stories of the Present". A new Living with Hope film entitled "Connecting with Hope" has been produced and will be used in this pilot study. The purpose of this pilot study is to evaluate the feasibility and acceptability of the Living With Hope Program and collect preliminary data on the effectiveness of the Living with Hope Program for family members of persons with dementia residing in Long Term Care. 30 participants will be recruited from St. Joseph's Auxiliary hospital, the Alzheimer's Society of Alberta, and the Alberta Caregivers Association in Edmonton based on inclusion criteria. Participants will be randomly assigned to one of three groups: treatment (Watching a film on hope and Stories of the Present for one month); low dose group (Stories of the Present only); or usual care group. In all groups measures of hope, quality of life, self-efficacy and guild will be collected at visit 1, day 7, day 14 and one month in addition to demographic information. Participants in group 1 and 2 (treatment group) will be asked to describe what they were thinking about when doing the hope activities on day 7, 14 and one month using qualitative interviews. At one month all participants will be interviewed using open ended audio-taped questions to help evaluate the study procedures

Conditions

Dementia

Keywords

Caregiver; Dementia; Long Term Care; Hope; Quality of Life; Intervention

Outcome Measures

Primary Outcomes (1)

• Hope

  Hope is measured by the Herth Hope Index (HHI). The Herth Hope Index is a 12 item (1-4 point)Likert scale that delineates three sub-scales of hope: a) temporality and future, b) positive readiness and expectancy, and c) interconnectedness. The HHI has been found to take approximately 5 minutes to complete. Summative scores range from 12-48, with a higher score denoting greater hope. The HHI has been found to be reliable (test-retest r=91, p\<0.05) and valid (concurrent validity, r=84, p.,0.05; criterion, r=92, p,0.05; divergent, r=-0.73, p,0.05).

  Change from baseline at day 7, 14 and 28

Secondary Outcomes (1)

• Quality of Life

  Change from baseline at day 7, 14 and 28

Other Outcomes (2)

• General Self-efficacy

  Change from baseline at day 7, 14 and 28

• Caregiver guilt

  change from baseline at day 7 , 14 and 28

Study Arms (3)

Living with Hope Program

EXPERIMENTAL

All participants in this group will receive the Living with Hope Program. It consists of viewing a 15 minute film on hope. Then for 5 minutes at the end of each day to write "Stories of the Present"to work on over one month. Stories of the present is a directed journaling activity which includes writing challenges of the day, what was their hope that day and what would be their hope tomorrow.

Behavioral: Living with Hope Program

Stories of the Present

EXPERIMENTAL

Participants in this group will write Stories of the Present and not see the film.

Behavioral: Stories of the Present

Usual Care

NO INTERVENTION

Participants in this group will not receive an intervention. Data collection for outcome variables will be the same as the participants in the other arms.

Interventions

Living with Hope Program BEHAVIORAL

The Living with Hope Program is based on the research team's grounded theory study "Hope and Connection". The film " Connecting with Hope" reflects the findings of the grounded theory study. Stories of the Present has been utilized in the team's previous research with family caregivers of persons with advanced cancer.

Living with Hope Program

Stories of the Present BEHAVIORAL

Stories of the Present is a directed journaling activity in which participants write in a journal at the end of the day their challenges, hope and hope for tomorrow

Stories of the Present

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• years of age and older
• English speaking
• Have a family member or friend with dementia who resides in Long Term Care.

You may not qualify if:

• persons who are non-autonomous adults
• cognitively impaired as determined by the Registered Nurse (RN) researcher
• unable to participate, in the opinion of the RN researcher
• non-English speaking
• does not have a family member or friend with dementia in Long Term Care

Sponsors & Collaborators

• University of Alberta: lead

Study Sites (1)

University of Alberta

Edmonton, Alberta, T6G 1C9, Canada

Location

MeSH Terms

Conditions

Dementia

Condition Hierarchy (Ancestors)

Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurocognitive Disorders; Mental Disorders

Study Officials

• Wendy D. Duggleby, PhD

  University of Alberta

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: RANDOMIZED
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: FACTORIAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: October 4, 2013
• First Posted: January 16, 2014
• Study Start: October 1, 2013
• Primary Completion: October 1, 2014
• Study Completion: October 1, 2014
• Last Updated: January 8, 2015

Record last verified: 2015-01

Locations

CA (1)