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.

Reducing the Stress of Parents of Children with Type 1 Diabetes

by Katherine Blackburn, Doctor of Pharmacy Candidate, University of Mississippi School of Pharmacy

Summary and Analysis of:   Whittemore R, Coleman J, Delvy R, et al. An eHealth Program for Parents of Adolescents With T1DM Improves Parenting Stress. The Diabetes Educator 2020;46(1):62-72.

Most parents' lives are full of stress with demands from multiple sources. Their work-life can demand one thing while their children's lives require something else. When do parents even find time to cook dinner? For parents of children living with a chronic illness, such as type 1 diabetes, their stress levels are much higher when compared to the average parent. However, it is vital that parents of children with type 1 diabetes learn how to manage their stress so that their stress does not adversely affect their child's life and care. A recently published study evaluated the benefits of a six-month educational program, called Type 1 Teamwork.¹ The investigators measured parental stress before and after using this innovative online program.

Type 1 Teamwork offers on-demand, online seminars and other activities focusing on the transfer of care responsibilities to the child, effective communication skills, and stress management. The study was a randomized control trial that recruited parents or guardians of a child between the ages of 11 and 16 with type 1 diabetes who were willing to commit to the six-month study and spoke fluent English. The eligible participants were randomly assigned to participate in the Type 1 Teamwork program or a control group. The participants in the Type 1 Teamwork group were immediately granted access to the online programming featuring diabetes information, tips for diabetes management, and skills for efficient communication between parents and children.  One of the goals of this program was to reduce parental stress. The program requested parents log into the portal once a week to review educational materials. The control group was given access to the Type 1 Teamwork program after completion of the study. To determine the primary outcomes of reducing parenting stress, the researchers utilized the Pediatric Inventory for Parents (PIP) and the Perceived Stress Scale. On both of these inventories, a higher score means a higher stress level. In addition to reducing parenting stress, researchers also analyzed parent anxiety, parent depressive symptoms, parent support for their child's autonomy, family conflict, and the child's A1C levels. To analyze the results, researchers used histograms and quantile-quantile plots to establish normality. For the primary outcome, they used an unadjusted, repeated measures regression model comparing parent's stress reported at baseline, three-months, and six-months in the two groups.¹

At baseline, 36% of parents participating in the study exhibited elevated depressive symptoms while 40% of parents exhibited elevated state anxiety symptoms. The average child’s baseline A1C was 7.9%. Parents reported that 75% of children used an insulin pump and 69% used a continuous glucose monitor to manage their diabetes. Researchers found that using Type 1 Teamwork deceased parent’s overall stress, improved communication between family members, and helped parents delegate responsibilities to their child to optimize their care. Parents also reported lower emotional distress and decreased struggles with parental roles and communication. However, because this was an online program focused on alleviating parenting stress, the program did not address ways to lower depression and anxiety symptoms other than encouraging parents to seek other treatment. While there were several benefits to participating in the Type 1 Teamwork program, the average A1C did not change over the six-month study.¹

One of the main strengths of this study was its broad eligibility criteria. These criteria allowed for people of all backgrounds, races, and geographic locations. However, most of the participants were married white women with a relatively high income. A potential weakness is the lack of objective verification – all results were self-reported by the parents.  Since the participants were not blinded, they may have been biased toward reporting positive results.¹ Though the study has weaknesses, I believe utilizing on-demand, online programs like Type 1 Teamwork can help reduce parental stress and can teach them new ways of communicating with their children.¹

In another study that examined parenting stress of fathers of children with type 1 diabetes, the investigators found that stress exhibited by the father can adversely impact both the mother and child’s stress response.² These fathers were also given the Pediatric Inventory for Parents to evaluate their overall stress levels; however, their results were much lower than the women in this study. In a third study completed in Germany, parents who attended weekly meetings with other families who also have children with Type 1 Diabetes exhibited lower psychological stress and improve parenting behaviors.³

High levels of parental stress can not only impact the parent’s mental health but also affect the care their child receives. Online programs, such as Type 1 Teamwork, offer support for parents and their children from the comfort of their home and at a time that is convenient, thereby reducing barriers to participation.¹ Educators should be aware of programs available for parents of children with Type 1 Diabetes to provide support materials they can review and choose from, such as the Diabetes Empowerment Foundation, which offers material for the person with diabetes, parents, and partners.⁴ Educators need to consider the circumstances each parent faces as well. Do they have a support system present? Are they the main caregiver for their child? Does the parent have time to incorporate meetings into their schedule? Are they financially stable? It is important to consider all factors of the patients when making recommendations because if educators overwhelm them with too much information, it can cause their stress levels to increase even more.

References

1. Whittemore R, Coleman J, Delvy R, et al. An eHealth Program for Parents of Adolescents With T1DM Improves Parenting Stress. The Diabetes Educator 2020;46(1):62-72.

2. Mitchell SJ, Hilliard ME, Mednick L, et al. Stress among Fathers of Young Children with Type 1 Diabetes. Fam Syst Health 2009; 27(4):314-324.

3. Sabmann H, de Hair M, Danne T, Lange K. Reducing stress and supporting positive relations in families of young children with type 1 diabetes: A randomized controlled study for evaluating the effects of the DELFIN parenting program. BMC Pediatrics 2012;12:152.

4. Diabetes Empowerment Health, Support & Wellbeing [Internet]. 2019 [cited 2020 Oct 9]. Available from: http://www.diabetesempowerment.org