Benefits of Training of-life Caregivers

Size: px

Start display at page:

Download "Benefits of Training of-life Caregivers"

Jocelyn Wilson
5 years ago
Views:

1 Benefits of Training End-of of-life Caregivers Jung Kwak, PhDc Jennifer R. Salmon, PhD Kimberly D. Acquaviva, Ph.D, M.S.W. Katherine Brandt, M.S. Kathleen A. Egan, M.A., B.S.N., CHPN

2 Need for Training Family Caregivers About End-of of-life Care Focus of most training has been on practical matters: Illness, treatment Help with ADLs/IADLs Community resources Communicating with health professionals Advanced care planning Rather than on positive aspects of EOL caregiving Personal growth, meaning/purpose, and letting go

3 Purpose of Study Evaluate the Effectiveness of Curriculum: Caregiving at Life s End: Train-the-Trainer Program by The Hospice Institute of the Florida Suncoast (THIFSC)

4 Curriculum Framework Hospice Experience Model of Care (Egan & Labyak, 2001) Ira Byock s developmental taskwork (Byock, 1996) adapted for caregivers Results of national needs assessment of family caregivers (Salmon, et al., 2005) Comfort with caregiving tasks, self-acceptance, meaning, and letting go: Associated with caregiver satisfaction. Mediate stressors Comfort: Associated with lower burden

5 Curriculum Components Train-the-trainer Curriculum Community Caregiver Curriculum

6 Community Caregiver Curriculum The Experience of Caregiving at the End of Life Aspects of Completion & Closure for the CG & CR Completion & Closure - Life Affairs Completion & Closure - Relationships with Community Completion & Closure - Personal Relationships Completion & Closure - Experience of Love of Self & Love of Others Completion & Closure - Acceptance of Finality of Life Completion & Closure - Meaning of Life Completion & Closure - Bereavement

7 Method Trainers trained on the Curriculum during one of five 5-day workshops (N=142) Trainers implemented the curriculum in their communities Curriculum designed to be flexible Differential implementation to accommodate needs of local groups: Individual or group Frequency and length

8 Method Administered pre- and post-surveys to caregivers Analyzed differences in three domains Comfort with carrying out tasks Closure Gains

9 Data Collection Data Collection Rosters to track exposure to the curriculum Pre-survey: at end of first session Post-survey: at end of last session Scales: Comfort with caregiving (Salmon et al., 2005; 12 items) Caregiver closure (Salmon et al., 2005; 6 items) Caregiver gain (Lawton et al., 2000; 6 items) Demographics Stressors

10 Caregiver Comfort Questions (Salmon et al., 2005) Communicating with health care professionals about my needs as a caregiver. Communicating with family members about my needs as a caregiver. Making decisions about care needs near the end of life. Handling legal and financial matters (such as insurance, documents regarding health care decisions, wills). Finding positive aspects of the caregiving experience. Developing skills to take care of myself. Adapting to my changing role and challenges. Talking about my religious and spiritual concerns. Finding meaning and purpose in caregiving. Feeling closure with my family member or friend. Knowing what to expect at the time of death. Saying the things I need to say to my family member or friend

11 Caregiver Closure Questions (Salmon et al., 2005) I know how to help my family or friend settle financial and legal matters (such as insurance, documents regarding health care decisions, wills). I ve come to understand that my role in my community changes when my family member or friend dies. I am grateful for this time I have with my family member or friend. I accept the finality of my family member or friends death. Caring for my family member or friend makes it easier for me to let go. My letting go makes it easier for my family member or friend to feel at peace.

12 Caregiver Gain Questions (Lawton et al., 2000) Helping my family member or friend has made me feel closer to him or her. I really enjoy being with my family member or friend. My family member or friend s pleasure over some little things gives me pleasure. Taking responsibility for my family member or friend gives my self-esteem a boost. Caring for my family member or friend gives more meaning to my life. I get a sense of satisfaction from helping my family member or friend.

13 Analyses Chi-square and ANOVA Paired sample t-tests Multiple linear regression (to test the intensity of the intervention, controlling for background characteristics) Experimental/not conclusive

14 Results: Response Rate & Demographics Response rate: 78 trainers (55%) 1,756 caregivers (87%) 926 completed both pre- and post-surveys (46%) Complete data came from 69 out of the 78 trainers Demographics of sample: Caucasian (88%), female (81%), 60 years old Adult children (35%), spouses (29%), and non-caregivers (36%)

15 Results: Stressors Average rating of support from others=3.3 (5=always) Providing care 51 hours a week for 3.5 years Self-rated health=2.6 (5=poor)

16 Results: Exposure to Curriculum 4 sessions (range 1-9) 7.6 hours (range 1-16 hours) Median: 7.5 hours Half of the caregivers received more than the recommended exposure

17 Results: Completion of Survey No significant demographic differences between caregivers who responded to just the pre-survey or both surveys. Caregivers who completed just the pre-survey were more likely (8%) to receive individual training than those who completed just the post-survey (1%); or both surveys (2%). They had slightly fewer hours of training (7.5) compared to those who completed both surveys. Caregivers who only completed the post-survey provided significantly longer hours of care per week (61 hours compared to 47 hours), less training (3.8 sessions).

18 Results: Benefits of the Curriculum Those who completed pre- and post-surveys (N=926) Significant increases in comfort, closure, and caregiver gain. High exposure (8-16 hours; mean=9.3) caregivers had significant increases in comfort and closure but not gains.

19 The Impact of Curriculum on Training Outcomes (n=926) Pre-Test Post-Test Comfort with Carrying Closure (6-30) Gains (6-30)

20 30 29 The Impact of Exposure to Curriculum on Training Outcomes (n=926) Comfort with Carrying Out Tasks (p<.05) Closure (p<.05) Gains Pre-Test Post-Test

21 Results: Benefits of the Curriculum Suggestive; not Conclusive (low R 2 ) Factors associated with caregiver comfort (R 2 =.04): Whites, exposure to curriculum (higher scores) Older caregivers (lower scores) Factors associated with caregiver closure (R 2 =.07): Whites, spouses, adult children, poorer health (higher scores) Older caregivers (lower scores) Factors associated with caregiver gain (R 2 =.03): Spouses, exposure to curriculum (higher scores) Older caregivers (lower scores)

22 Discussion First 17 months after training, 79 trainers reported that they trained 2,052 caregivers (25% of our initial goal). Extrapolated to all trainers, 3,692 caregivers may have been trained The curriculum improved all three outcomes. Half of caregivers received fewer than the recommended amount of training. Exposure to the curriculum at greater than the intended level (9.28 hrs) showed sig. increases in comfort and closure but not gains (compared to those who averaged 5.26 hrs).

23 Discussion Relatively easy intervention for hospices and other organizations to implement Implemented in hospices and non-hospices (AAAs, faith-based organizations) Pre-post evaluation possible in a noncontrolled environment

24 More Information Jung Kwak, PhD c jkwak@cas.usf.edu Jennifer R. Salmon, PhD jsalmon@cas.usf.edu Kathleen A. Egan, MA, BSN, CHPN KathyEgan@TheHospice.org

Transformative Aspects of Caregiving at Life s End

Vol. 29 No. 2 February 2005 Journal of Pain and Symptom Management 121 NHPCO Original Article Transformative Aspects of Caregiving at Life s End Jennifer R. Salmon, PhD, Jung Kwak, MSW, Kimberly D. Acquaviva,