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. 2023 Mar 29;9:23337214231163028. doi: 10.1177/23337214231163028

Sleep Quality and Disability for Custodial Grandparents Caregivers in the Southern United States

Kellie E Mayfield 1,✉, Karen C Clark 2, Raeda K Anderson 3,4
PMCID: PMC10064167  PMID: 37006885

Abstract

Sleep quality amongst caregivers with disability may have been compounded by the COVID-19 pandemic. We evaluated differences in sleep quality amongst custodial grandparents from a southern state that were identified through state-based Kinship Care support groups coordinators and online. Participants (N = 102) completed the Pittsburgh Sleep Quality Index and self-reported disability statuses. Gamma tests showed a strong negative relationship between disability and sleep duration indicating fewer hours of sleep, higher use of sleep medication and greater sleep disturbances. Disability is not significantly related to sleep latency, sleep efficiency, and daytime dysfunction. T-tests showed no strength of relationship between disability and overall sleep quality. During the first year of the COVID-19 pandemic, custodial grandparents with disability had greater issues with their sleep quality than those without disability. Sleep, as it pertains to its overall preponderant role in maintaining good health, should be examined amongst custodial grandparent caregivers and those with disability.

Keywords: sleep quality, disability, custodial grandparents, Southern United States, PSQI

What This Paper Adds

  • Our results give support to the importance of the relationship between sleep and disability of caregivers; particularly custodial grandparents.

  • Poor sleep quality could be a social determinant in health outcomes of custodial grandparents in the southern United States.

  • Studies generally examine caregiving and sleep quality, but not by custodial grandparent caregivers. This study showed that having a disability as a custodial grandparent was a contributing factor in the use of sleep medication.

Applications of Study Findings

  • Sleep quality should be an inclusionary factor by clinicians and support staff when evaluating custodial grandparent caregiver health.

  • Caregivers with disability and poor sleep quality has implications for the impact on children receiving care.

  • Health professions and support providers of custodial grandparents in the south should monitor caregiver sleep quality and pay additional attention to those with disabilities.

Introduction

It is readily accepted that adequate sleep is an integral component of good health; however, there are many conditions and populations who regularly experience poor sleep and the concomitant complications stemming from this inadequacy. Poor sleep quality is associated with chronic diseases such as risk of developing diabetes (Knutson et al., 2006), obesity (Taheri, 2006), and with depression or depressive symptoms (Dinis & Bragança, 2018; O’Leary et al., 2017). Specifically short sleep, which is sleep <5 to 6 hr, is associated with an increased risk of hypertension, diabetes mellitus, hyperlipidemia, obesity, and frequent mental distress (Grandner et al., 2014). Sleep is vital for components of memory (Ellenbogen et al., 2006), immunity (Besedovsky et al., 2012), and inflammatory responses (Mullington et al., 2010). These patterns have been found to be geospatially variant; in the Southeastern United States, which includes Georgia, short sleep (≤7 hr) is most prevalent (Liu, Croft, et al., 2016; Liu, Wheaton et al., 2016). Furthermore, custodial grandparents are one of those populations that are impacted by poorer sleep.

Custodial grandparents, an increasing and vulnerable population, are an aging population whose sleep habits are understudied. Stearns and Nadorff (2020) found that being a custodial grandparent moderated the relationship between poor sleep quality and depressive symptoms. Indeed, the literature on custodial grandparents shows they experience high levels of depressive symptoms and stress (Baker & Silverstein, 2008). Another study reported sleeplessness as a response to stress and fatigue as a health concern for custodial grandparents (Taylor et al., 2017). Custodial grandparent caregivers are likely to be older; thus having health issues that often concur with greater age including problems around sleep and the bodily stressors that can come with caregiving.

Sleep quality declines with age and has an impact on daily activities. Sleep latency, the time from turning off the lights until the onset of sleep, increases with age, particularly after 65 years of age (Ohayon et al., 2004). This decline in sleep quality has an on impact movement and daily functioning. A longitudinal study of independently living adults 60 years and older found that sleep quality contributed bidirectionally to physical activity: better sleep quality improved physical activity while poorer sleep indicated less physical activity (Holfeld & Ruthig, 2014). Regarding daily functioning, instrumental activities of daily living (IADL) are a key component for living unassisted and for quality of life. Everyday functioning included every problem-solving and IADL (Parsey et al., 2015). Sleep quality’s impact on daily activities could have a greater impact on specific populations, such as those with disability and caregivers, may have multiple conditions that often occur with increasing age.

One in four Americans in the United States have a disability (Disability Impacts Us All, Center for Disease Control and Prevention [CDC], 2020), which can have a circular effect on disease; poor sleep exacerbates disease and disease exacerbates poor sleep. Individuals with disability are more likely to live in the South, and at a greater number (2 in 5), once reaching 65 years and older (CDC, 2020). In the United States, there are more custodial grandparents in the South, with 25% of the non-Hispanic custodial grandparents being disabled (Siordia & Rauktis, 2016). Custodial grandparents are a group at the crux of disability, chronic disease, and poor sleep quality. Because of the interrelationship of custodial grandparent stressors, chronic disease, and sleep, this study examined sleep amongst custodial grandparents with disability in Georgia early Fall 2020 to Spring 2021.

Methods

Data were collected via a self-administered online cross-sectional survey study of custodial grandparents in Georgia during the first fall and spring of the COVID-19 pandemic in 2020 and 2021. Participants were recruited from Division of Aging Services (DAS) Kinship Navigator (Statewide Kinship Navigators) support groups and online. Grandparents that were recruited online were verified for Georgia residency using IP addresses verified by latitude and longitude and verification of home address. Participants were required to provide written consent before beginning the survey. The Georgia State University Institutional Review Board approved this study, IRB number H21077.

All Georgia custodial grandparents completed an online survey in Qualtrics (Qualtrics, Provo, UT) (2005) that included background questions and multiple survey instruments related to social determinants of health. Reported here are responses on sleep quality and disability. The Pittsburgh Sleep Quality Index (PSQI) was used to assess the quality of sleep. It includes 24 items, grouped into seven dimensions: subject sleep quality, sleep latency, sleep duration, sleep efficiency, sleep disturbance, use of sleep medication, daytime dysfunction, and the overall global sleep quality. Each dimension received a score of 0 (no difficulty) to 3 (severe difficulty), where the total score of Global Sleep Quality ranges from 0 to 21, with higher scores indicating worse sleep quality. The PSQI is a valid and reliable instrument to assess subjective sleep quality (Buysse et al., 1989), including older adults (Smyth, 2008). The questions related to usual sleep habits during the past month and indicated the most accurate reply for most days and nights in the past month. Disability was reported as yes or no with option to specify type of disability.

Participants were included in the study using a tier system based on the number of completed responses about sleep; participants with greater number of completed items were included. To preserve statistical power and due to the small sample size, this study employed pairwise deletion (Newman, 2009). Thus, the sample size per analytical test varies based on item non-response for study measures. Inclusion criteria included the following: being a custodial grandparent with custody of a least one grandchild in the home, having provided an email or physical address for incentive, having completed the survey in 900 s or greater, no more than two participants living at the same address, and verified as Georgia residents based on their IP address with no more than two participants living at the same address. Exclusion criteria included not being a custodial grandparent, no grandchildren living in the home, no email or physical address provided, completion of the survey in less than 900 s, not a resident of Georgia and more than two participants living at the same address.

Gamma tests were conducted to compare the sleep dimensions (i.e., subjective sleep quality, sleep latency, sleep duration, sleep efficiency, sleep disturbance, use of sleep medication, and daytime dysfunction) of older adults without disabilities and older adults with disabilities. Independent sample t-tests were conducted to examine the relationship of overall sleep quality amongst those with and without disability. Both were tested at a significance level of p < .05, with values at below .05 considered significant. All statistical analysis was performed using STATA 16 software (Statacorp 2019, College Station, TX: StataCorp LLC).

Results

Data collection took place between September 2020 and April 2021. Of the participants recruited, 102 were included that completed the demographic data and study questionnaires that included sleep quality and disability status (mean age = 56.97, range = 31–78 years of age). Seventy-eight percent of older adults were not disabled, 53.90% were white, were married (48.04%), were employed full-time (28.53%) and had some college education (38.24%). Older adults with disabilities and older adults without disabilities had similar number of children in the (mean of 1.40 and 1.45, respectively), with a range of 1 to 3 if they were disabled, and 1 to 4 of they were not disabled. General characteristics are shown in Table 1.

Table 1.

Descriptive Statistics of Custodial Grandparents in Georgia During COVID-19 Pandemic.

Overall (n = 102) Disabled (n = 22) Not disabled (N = 80)
M (SD) Range M (SD) Range M (SD) Range
Age
 Age (years) 56.97 (9.28) 31–78 58.64 (8.39) 38–78 56.51 (9.51) 31–75
Household
 Number of adults 2.90 (1.40) 1–7 2.23 (0.97) 1–4 3.09 (1.45) 1–7
 Number of children 1.44 (0.67) 1–4 1.40 (0.68) 1–3 1.45 (0.68) 1–4
% % %
Race
 Black 35.29 50.00 31.25
 White 53.90 27.27 49.02
 Other 10.81 22.73 19.73
Ethnicity
 Hispanic 2.94 0.00 3.75
Marital status
 Single 22.55 31.82 20.00
 Married 48.04 31.82 52.50
 Divorced 7.84 9.09 7.50
 Widowed 10.78 13.64 10.00
 Other 10.79 13.63 10.00
Employment status
 Employed full-time 28.43 4.55 35.00
 Employed part-time 24.51 27.27 23.75
 Retired 16.67 9.09 18.75
 Disabled 10.78 36.36 0.00
 Other 19.61 22.73 22.50
Education
 Less than high school 19.61 22.73 18.75
 High school and GED 17.64 27.27 15.00
 Some college 38.24 22.73 42.50
 College graduate 24.51 27.27 23.75
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Sleep and disability status are associated, particularly sleep duration. There was a strong negative relationship between disability status and sleep duration for grandparents (Γ = −.409, p = .034). Thus, grandparents with disabilities have a higher sleep efficiency score, meaning fewer hours of sleep (M = 1.30, SD = 0.657) than grandparents without disabilities (M = 0.95, SD = .732). Sleep duration, though significant, was the least significant with p-value of .034. Followed by the use of sleep medication (Γ = −.533, p = .006), sleep disturbance (Γ = −.567, p = .012) and subjective sleep quality (Γ = −.588, p = .002) (Table 2).

Table 2.

Sleep Quality Components by Disability Status of Grandparent.

Sleep component Disability status Descriptive statistics Analysis
M SD N Γ/t-testa p Value Sig
Subjective sleep quality With disability 1.68 0.839 22 −.588 .002 **
Without disability 1.08 0.689 80
Sleep latency With disability 2.00 0.970 18 −.239 .246
Without disability 1.69 0.950 77
Sleep duration With disability 1.30 0.657 20 −.409 .034 *
Without disability 0.95 0.732 79
Sleep efficiency With disability 0.82 1.296 22 −.049 .840
Without disability 0.66 1.043 80
Sleep disturbance With disability 1.74 0.562 19 −.567 .012 *
Without disability 1.34 0.579 76
Use of sleeping medication With disability 1.68 1.287 22 −.533 .006 **
Without disability 0.73 0.843 79
Daytime dysfunction With disability 1.20 0.696 20 −.023 .913
Without disability 1.14 0.679 78
Overall sleep quality With disability 9.75 3.975 16 1.940a .700
Without disability 7.77 3.614 69
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a

Analysis conducted via independent sample t-test.

This meant that grandparents with disabilities have a higher use of sleep medication (M = 1.68, SD = 1.287) than grandparents without disabilities (M = 0.73, SD = 0.843). Sleep medication use between custodial grandparents with and without disability had the largest difference (i.e., 1.68 and 0.73, disability and without disability, respectively). Those with disability had more sleep disturbances (M = 1.74, SD = 0.562) than grandparents without disabilities (M = 1.34, SD = 0.579) and fewer hours of sleep (M = 1.30, SD = 0.657 and M = 0.95, SD = 0.732). Finally, subjective sleep quality was the most significant with the lowest p-value of 0.002. Grandparents with disability had a higher subjective sleep quality score (M = 1.68, SD = 0.839) than grandparents without disabilities (M = 1.08, SD = 0.689).

The components of the PSQI that were not associated with disability were sleep latency, sleep efficiency and daytime dysfunction (Γ = −.239, −.049, and −.023: p = .246, .840, and .913, respectively). Overall sleep quality, analyzed using independent sample T-test, indicated no strength of relationship between disability and overall sleep quality (T-test = 1.941. p = .700). See Table 2 for the complete results.

Discussion

Main Findings

As hypothesized, we observed that sleep was associated with disability status of custodial grandparents in Georgia during the early months of the COVID-19 pandemic, demonstrating the need for further examinations of custodial grandparents with disabilities. The instrumentation and delivery format of this study were ideal for answering the research question(s) posed by this study, examining sleep quality amongst custodial grandparents with disability. An online survey was particularly advantageous for groups that may not have been able to meet in person during the pandemic, such as older disabled adults and the immunocompromised, and those with children (Reid et al., 2021). It also offered a greater breadth and reach of custodial grandparents throughout Georgia. Exclusion criteria delimited participants who were not in Georgia and may have in fact been bots: each physical address was verified on a map, IP (internet protocol) addresses were checked for latitude and longitude location, removed presumed non-sensical ages of custodial grandparents and time to complete survey. Exclusion criteria are particularly important as surveys moved online during the pandemic and to prevent the use of untrustworthy data in studies of underrepresented minorities (Bybee et al., 2022).

The PSQI has been shown to be an easily understood survey for participants with disability (Altman et al., 2018; Chien et al., 2015; Tabrizi & Radfar, 2015; Zarrabian et al., 2014) and custodial grandparents (Stearns, 2019). Mostly, the PSQI is administered for other types of caregivers and not custodial grandparent caregivers. This further emphasizes the need of examining the sleep quality pattern differences for older adults.

Sleep Duration

Though using different time-based tools, other studies found positive associations between disability and sleep duration. A nationally representative study of American adults found that having a disability was positively associated with short sleep duration than those without disabilities (Okoro et al., 2020; Shandra et al., 2014). Okoro et al. (2020) used BRFSS (Behavioral Risk Factor Surveillance System) data that reported “average hours of sleep in a 24-hr period,” and found that adults with any disability had a higher prevalence of short sleep duration, <7 hr over a 24 hr period, than those without disability (43.8% vs. 31.6%, p < .001). We found similar results for adults with a disability, though only moderately strong (γ = −.408, p = .034). Short sleep duration, compared to normal sleep duration, significantly increases diabetes, hypertension, cardiovascular disease, coronary heart disease and obesity (Itani et al., 2017). Of all the components of sleep quality, it is integrally essential to disease states, thus overall health. It is particularly impactful for custodial grandparents raising grandchildren, who are at higher risk for negative changes to their physical and mental health (Hadfield, 2014).

Sleep Medication

As it applies to disability and sleep, the type of disability may impact the use of sleep medication for patients as compared to those without a disability. Compared to healthy individuals, patients with multiple sclerosis and spinal pathology use of sleep medication were significantly correlated to their disability (Lobentanz et al., 2004; Zarrabian et al., 2014) however, not ALS (amyotrophic later sclerosis; Coco et al., 2011). It may be that the use of sleep medication changes based on the type and the etiology of the disability.

In a related study, Stearns and Nadorff (2020) examined if poorer sleep quality was associated with greater depressive symptoms and if it was moderated by grandparent caregiving status. They found that custodial grandparents reported significantly more use of sleep medication than non-custodial grandparents. Our study found that disability status of custodial grandparents was a contributing factor of the use of sleep medication. It could be that living with a disability has side effects impacting sleep that are further exacerbated by the duties incurred when caregiving for a grandchild(ren).

Subjective Sleep Quality

Globally, sleep quality in older adults is important to understand its potential impact on population health. In a related study, Zhang et al. (2020) compared demographic variables amongst adults 65 years of age and older in China using the PSQI. As it related to this study and measures of disability, family history of psychiatric disorders and major medical conditions are the nearest variable that is similar to disability, as in our study. Major medical conditions and family history of psychiatric disorders were each significantly associated with poor quality sleep (Zhang et al., 2020). Alternatively, in our study if you had a disability you had poorer sleep quality, however, it was not significant. The major medical conditions from Zhang et al. (2020) included hypertension, diabetes, cerebrovascular disease, gastrointestinal disease, and cancer. These are all conditions that can lead to disability, particularly diabetes, cerebrovascular disease, and cancer. In sum, custodial grandparents are one of those populations that are impacted by poorer sleep. We found that for custodial grandparents, disability was associated with sleep duration, higher use of sleep medication, sleep disturbances and sleep disturbances and fewer hours of sleep.

Given the significant and substantive differences between custodial grandparents with and without disabilities, an additional analysis should be conducted to understand how subcomponents of subjective sleep quality are associated with each other for custodial grandparents. Moreover, analysis of subcomponents will allow a deeper understanding of associations between these subcomponents for custodial grandparents, regardless of disability status.

Sleep quality is tied to nearly all health outcomes that yield good healthy. Generally, healthcare practitioners should be cognizant of sleep quality and health outcomes and provide patients with information on establishing healthy sleep across all subcomponents of sleep quality and not just medication use: sleep medication should be the last resort. Furthermore, food security was a common theme when examining disability literature. The intersection of disability, food security, and sleep should be further examined and could support the involvement of nutrition-based healthcare professionals such as dietitians and nutritionists.

Study Limitations

Sampling for this study was an online convenience sample within Georgia during the first fall and spring of the COVID-19 pandemic. Our study was limited to grandparents in Georgia, and may be criticized as biased toward those able to use technology to complete the Qualtrics survey. While the Qualtrics survey increased the ability to access a greater number of custodial grandparents, it was biased to grandparents with internet access or adjacent technology like smart phones. We may have missed those living in areas on the digital divide: rural and exurban communities.

Our cross-sectional study did not collect data on their sleep hygiene practices, except those within the PSQI tool or the specific disability. Custodial grandparents are not all seniors over the age of 65. The youngest included in this sample was 31 years old. Because custodial grandparents exist along the age spectrum, our research may not have captured those differences.

We did not explicitly ask if the custodial grandparents were diagnosed with COVID-19, if anyone in their home had COVID-19 or were dealing with the effects of long-covid, as this was not the focus of the study. Data on a COVID-19 diagnosis and their experiences of long COVID may have provided an additional facet of their disability and their caregiving responsibility. Also, results are not generalizable to adults who are caregivers or have a disease that they do not consider to be a disability.

Conclusion

The custodial grandparent caregivers in this Southern state in the US during the COVID-19 pandemic displayed differences in components of sleep quality between grandparents with and without a disability. The largest significant differences between those with and without a disability were in subjective sleep quality and the use of sleep medicine. Perhaps doctors and practitioners can counsel custodial grandparent caregivers on multiple modes of stress reduction that directly relate to better sleeping and less use of sleep medication.

It is clear that sleep quality and components of sleep quality should be further investigated in more custodial grandparent caregivers; particularly caregivers with any type of disability. Caregivers, particularly those that care for children, with a disability may benefit from further examination, attention and treatment addressing quality of sleep. As a high risk and vulnerable population, they experience compounding effects of age related caregiving and disability.

Acknowledgments

For recruitment help, thank you to David Watkins, Aging Services Coordinator/Caregiver Specialist with the Georgia Department of Human Services Division of Aging Services. Additionally, we want to thank custodial grandparents in the state of Georgia that decided to participate in this study.

Footnotes

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Nutrition Department of the Lewis College of Nursing and Health Professions at Georgia State University in Atlanta, Georgia.

Ethical Approval: The Human Research Protection Program (HRPP) is a unit of the University Research Services & Administration (URSA). The Georgia State University IRB is part of the HRPP. IRB number H21077.

ORCID iD: Kellie E. Mayfield Inline graphic https://orcid.org/0000-0003-1424-0307

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