Difficulties Fulfilling Self-Care Needs Among Family Caregivers: An Observational Study

Study Purpose

In this article, we analyzed the SCAs that were affected in caregivers of a family member with a disability or chronic illness, based on three objectives:

Objective 1: to describe the sociodemographic and caregiving profile of family caregivers

Method

We conducted a descriptive, cross-sectional, and analytical study of family caregivers from 20 social health care entities in the city of Zaragoza, Spain, that care for people with physical, mental or cognitive, sensory, intellectual, and developmental disabilities in 2018.

The following inclusion criteria were established for the sample selection:

▪ family caregivers age 18 yr of age or older who have no mental illness or cognitive impairment and who do not receive specific remuneration for the care provided.

The sample size was defined as 377 persons with a maximum margin of error of 5% for a confidence level of 95% and under the assumption of maximum variance (p = q = .5). We obtained a sample of 500 persons; therefore, the margin of error was 4.3% for a confidence level of 95%.

Results

The sample consisted of 500 family caregivers. Table 1 shows participants’ sociodemographic information and caregiver profile. Notably, the mean age of caregivers was 60.3 yr, most of the primary caregivers were women (72.8%), more than half of them had a secondary education or higher, and 61.6% did not have a paid job. The total number of family members cared for was 500, mostly women (55.8%), with mixed disability in 69.8% of the cases with high dependency. Participants had assumed the role of caregiver for an average of 13.2 yr, for 15 hr a day, with 4 hr off each day. More than one-third of caregivers had illnesses that hampered their caregiving duties, and 75.4% (n = 377) were living with the family member they cared for (Table 1).

Regarding the affected activities, greater difficulty was found in activities related to caregivers’ self-care, followed by those concerning community management and mobility. About one-third (32.8%) of caregivers considered that they had difficulty in fulfilling all the activities related to self-care that they would like to perform. Getting enough rest and sleep was found to be the most affected activity (46.6%), followed by receiving treatments to improve health (31.6%) and physical exercise (31.2%; Figure 1).

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Figure 1.

Prevalence of affected self-care activities among family caregivers.

The family caregivers obtained a mean occupational performance score of 3.77 (SD = 2.18), a mean satisfaction score of 5.02 (SD = 2.69), and mean QoL scores as follows: physical health, 56.39 (SD = 19.49); psychological health, 54.75 (SD = 18.52); social relations, 50.1 (SD = 20.84); and environment, 54.31 (SD = 15.51). After analyzing the occupational profile variables and their relationship with performance, satisfaction, and QOL, we observed that as the number of affected activities increased, performance, satisfaction, and QOL decreased, with the exception of SCAs, which were not correlated with satisfaction (Table 2).

After analyzing the relationship between the affected SCAs and participants’ gender, χ² tests revealed that female caregivers had greater difficulty than male caregivers in certain aspects related to self-care, such as taking a shower in peace, personal grooming, dressing according to their preferences, and receiving medical and beauty treatments. In addition, women had greater difficulty than men in moving around outside the home and using public transport. No significant differences were found between female and male caregivers in relation to community management tasks.

Significant differences were observed when age was related to self-care difficulties. Younger caregivers reported more difficulties fulfilling all SCAs, with the exception of sleeping, resting, and brushing teeth, for which no significant differences were observed in relation to the age of the caregiver. In contrast, older caregivers presented greater difficulty with their mobility both indoors and outdoors (Table 3).

Discussion

To our knowledge, this is the first study to analyze the affected SCAs while relating them to performance, occupational satisfaction, and QoL in a population of family caregivers, providing a perspective on gender and occupational performance. Our results show how SCAs are impaired in family caregivers and their relationship with lower satisfaction and QoL, especially among women, consistent with other studies (Guato-Torres & Mendoza Parra, 2022; Van Roij et al., 2021). Caregiving has a negative impact on the health of caregivers, who are unable to get sufficient rest, receive medical treatment, or engage in healthy activities such as physical exercise. In fact, one-third of the caregivers had illnesses that hampered their ability to care for their family member.

A lack of self-care among family caregivers is evident, which would explain a decrease in adherence to medical treatments and unhealthy lifestyles, such as substance abuse (e.g., tobacco, alcohol, drugs), together with inadequate nutrition and a higher incidence of diseases. This pattern of behavior could be related to caregiver syndrome (Buenfil Díaz et al., 2016; Orta et al., 2016; Park, 2021), associated with lower subjective well-being and physical health (Castellanos, 2022; Guato-Torres & Mendoza Parra, 2022; King et al., 2021). Our results indicate that the reality faced by family caregivers does not correspond to a lack of awareness, as considered by other authors (Yip, 2021). Rather, it is more likely that they are unable to perform their own SCAs or do so with much difficulty because they prioritize time spent caring for their family member, which negatively affects their health because of their inability to carry out meaningful activities and participate in life situations (AOTA, 2020).

Our findings are consistent with those of de Wit et al. (2019) in their study on caregivers with a family member with amyotrophic lateral sclerosis. These researchers stated that mobility difficulties limited caregivers’ participation in social activities and that most of the caregivers’ time was dedicated to bureaucratic procedures, which, added to the need to accompany their family member to medical visits, reduced their own self-care time, affected their working life, and generated stress (Bagatell et al., 2023; de Wit et al., 2019). Our data show that difficulties involving rest and sleep affect more than half of the caregivers. These results coincide with those of Lauritzen et al. (2015), who highlighted insomnia and fatigue as the main repercussions of caregiving, with a negative impact on their physical, psychological, and social health. In contrast, Hijuelos García et al. (2018) reported that lack of sleep and the need for rest did not appear to be an issue affecting the performance of caregivers. These conflicting findings could be because the caregivers presented higher levels of performance and their relatives presented lower levels of dependency than those in our study. Moreover, Hijuelos García et al. (2018) presents certain limitations such as the small sample (18 caregivers) and the reduced number of variables, with a homogeneous population of caregivers of relatives with physical disabilities.

Caregivers ages 18–40 yr displayed the most difficulty in all the SCAs assessed, with the exception of sleeping and resting. Thus, a trend is observed, in which, as the caregiver ages, they report less difficulty in SCAs, in line with other studies (Roca Roger, 2000). Some authors interpret this as an acceptance of their condition as caregivers, which leads them to adjust their values and interests (Agulló Cantos et al., 2019).

There seems to be a tendency to consider care across the life span, with a focus on the care recipient rather than the caregiver. A study by De Oliveira et al. (2015) found that caring for children was associated with more depressive symptoms, whereas caring for older adults was associated with greater caregiver burden; however, no significant differences have been found concerning the caregivers’ QoL. In contrast, in our study we focused on the characteristics of family caregivers, and we found that QoL is impaired because of the difficulties related to the fulfillment of SCAs, which is in turn related to lower occupational performance and satisfaction.

Gender and occupational analyses are fundamental in research related to caregiving. However, we have not found any study that included analyses of both occupation and gender, as in our study. Our results can help to explain these differences, because the female caregivers in our study reported greater difficulties in aspects related to self-care such as personal grooming, receiving beauty treatments and medical treatments, and dressing according to their preferences. In addition, they had more difficulty than men regarding mobility outdoors, which may help explain why men perform more caregiving tasks outside the home (e.g., shopping, errands), which are protective activities in terms of perceived health decline (García Calvente et al., 2011). In addition, the greater self-care involvement of female caregivers could explain their worse QoL compared with male caregivers. García Calvente et al. (2004) showed that female caregivers who had no health problems before caregiving were those who perceived their health status as poor or very poor, in contrast to female caregivers who already had some kind of health problem before caregiving. Both studies show the impact on health and QoL of female caregivers; our findings complement this by also assessing male caregivers, providing evidence of a greater impairment of QoL among female caregivers than among their male counterparts. Moreover, if we consider the greater involvement of women in caregiving, this constitutes a key element for understanding the impact of gender roles on health inequalities (García Calvente et al., 2011). The obligation to care clashes with the concept of occupational justice, which ensures that people have the opportunity for full participation in occupations that define and complement them as persons (Bailliard et al., 2020). Similarly, the WHO and the philosophies advocated in the Ottawa Charter for Health Promotion recognize that health can be affected by a person’s inability to carry out activities and participate in life situations, thus highlighting occupational performance and participation as factors that benefit people’s health and well-being (AOTA, 2020). Consequently, programs directed toward family caregivers should consider their QoL and recommend appropriate treatments.

Limitations

Although our sample size was sufficient, our study population was limited to a single region in Spain, which limits the generalization of the results to other contexts. Variables such as age of care recipients, living with a relative, community resources, and social support (which has not been analyzed in this study) could have influenced the results. However, our study focused on caregivers so that their needs can be assessed from an occupational therapy standpoint. We believe that the results of this study are highly useful for health care workers and especially for occupational therapists who work with clients of all ages and their respective family caregivers.

Implications for Occupational Therapy Practice

Although additional research on the SCAs of family caregivers is necessary, the findings of this study have the following implications for occupational therapy practice. Occupational therapy practitioners can

▪ improve programs aimed at caregivers of family members with a disability or chronic disease by addressing their self-care needs to improve or preserve their QoL;

Difficulties related to the self-care of family caregivers should be addressed in the curriculum of future occupational therapists.

Conclusion

Caregivers of family members with disabilities or chronic disease, and to a greater extent young people and women, experience a decline in SCAs, especially with difficulty resting and sleeping. This decline is directly related to lower occupational performance, satisfaction, and QoL.