The Importance of Educating Caregivers Too

by Lydia Kneemueller, Doctor of Pharmacy Candidate, University of Mississippi School of Pharmacy

Summary and Analysis of:  Alnazly EK. The impact of an education Intervention in caregiving outcomes in Jordanian caregivers of patients receiving hemodialysis: A single group pre-and-post test. International Journal of Nursing Sciences 2018; 5(2): 144-150.

I feel that caregiver education is often overlooked.  I think it’s equally important that we address the needs of caregivers as well as patients. As baby boomers continue to age, the needs of caregivers will only increase and the current pandemic has only made their burden greater. I found a study that specifically addresses caregiver education.  The study looked at the level of stress that caregivers experience and evaluated the impact of an educational program on caregiver burden and perceptions of life.¹

This study was carried out in Jordan at four outpatient hemodialysis facilities located in three different cities.¹ Each caregiver filled out a questionnaire about socio-demographics which also included questions about their health such as headaches, difficulty sleeping, hypertension, and heartburn. In addition, the participants completed a 15-item questionnaire to measure the burden of physical and emotional caregiving tasks on a 5-point scale. Lastly, participants had a 15-item questionnaire that was used to measure caregiver perception of their life, in which a score of 4 or greater indicates the caregiver’s perception of life has changed for the better.¹

During the educational program, caregivers were provided information about how to perform caregiving tasks such as diet and nutrition, food recipes, weight control, blood pressure monitoring, infection, fistula care, quinine catheter care, skin hygiene, bleed precaution, medications, fall prevention, available resources, and involving other family members in patient care¹. Methods of teaching included lectures, small group discussions, return demonstration, videos on DVDs, and written materials which were developed at a 5th-grade reading level. The instruction was provided during one 4-hour session. After the session, behavioral skills were observed using simulations and scored using a checklist. The caregiver burden assessment was administered two weeks after the educational session in order for caregivers to have time to implement the newly acquired skills.

During this study, 169 caregivers completed the pre and post questionnaires. The participants had between 1 and 15 years of experience serving as a caregiver, most were female (55.6%), and their ages ranged from 26 to 70 years old. Many of the caregivers indicated they had a high level of difficulty meeting the patient’s dietary needs.  They also expressed concerns about finances and finding help with caregiving tasks.

Following the education intervention, there was a positive change in the caregiver perception scores which suggests that the instructional activities likely had a positive impact on the caregiver’s life perceptions.  See Table 1. In fact, almost all scores significantly improved. The only scores that did not increase to above 4 were the time for social activities (pre 2.30 to post 3.65) and financial well-being (pre 2.86 to post 3.99). It is clear that the intervention provided a positive increase in scores on all change in life perception characteristics evaluated. 

Table 1:  Changes in Caregiver Perceptions (Pre vs. Post Scores)

Characteristic	Difference in Scores
Self Esteem	+ 1.55
Physical Health	+ 2.31
Time for family activities	+ 1.84
Ability to cope with stress	+ 1.06
Relationship with friends	+ 1.46
Future outlook	+ 1.64
Level of energy	+ 1.36
Emotional well-being	+ 1.12
Roles in life	+ 1.13
Time for social activities	+1.35

 

One of the weaknesses of this study is that since hemodialysis is life-long, these results may not be the same for caregivers who care for patients with short-term health conditions. Moreover, hemodialysis requires very hands-on, intense caregiving skills similar to the level of care that patients with cerebral palsy and dementia require. This study also did not have a control group, so while the pre and post-intervention assessments showed an improvement, there was no control group to compare the effectiveness of the educational program.  Because the patients were not blinded and likely want to please the investigators, their responses may have been biased.  The three assessments were appropriate to measure and could be applied to caregivers in all levels of care.

Another study that provided education to caregivers of patients with dementia had a similar impact on caregiver burden.² The dementia study was a randomized, controlled study that evaluated the effects of an education program that consisted of 5 weekly sessions that covered topics about treatment, ways to improve patient communication, and methods to help control patient’s unusual behaviors.² Family members who participated in the education program had a significant reduction in caregiving burden one month following the educational program, whereas the group that did not have any education had increased levels of burden. In another study, an assessment of the effectiveness of educational intervention for improving the complementary feeding (weaning) practices of primary caregivers of children was evaluated.³ The findings showed that caregivers randomly selected for the educational intervention demonstrated improvements in complementary feeding and hygiene practices.³

These studies demonstrate the importance of educating our caregivers and that such interventions can positively impact caregiver burden and quality of life. These studies have made me realize how important it is to educate not only patients but also their caregivers — to make sure they understand the medications and how to perform caregiving activities. Improving the lives of caregivers hopefully results in better patient care which is my goal as a student pharmacist.

References

1. Alnazly E K. The impact of an education Intervention in caregiving outcomes in Jordanian caregivers of patients receiving hemodialysis: A single group pre-and-post test. International Journal of Nursing Sciences 2018; 5(2): 144-150.
2. Pahlavanzadeh S, Heidari FG, Maghsudi J, Ghazavi Z, Samandari S.(2010). The effects of family education program on the caregiver burden of families of elderly with dementia disorders.Iran J Nurs Midwifery Res. 2010; 15(3): 102-108.
3. Arikpo, D., Edet, E. S., & Chibuzor, M. T. (2018). Educational interventions for improving primary caregiving complementary feeding practices for children ages 24 months and under. Cochrane Database of Systematic Reviews. doi:10.1002/14651858.cd011768.pub24.