Caring for a Chronically Ill Child While Employed: A cross sectional study on the impact on the quality of life of Jordanian mothers

Abstract Background: The quality of life of working women who cares for a child with chronic illness is of interest to families and health care professionals, as balancing work-life and routines of daily life gets complex when a child is chronically ill. The purpose of the study was to examine the QOL of working and non-working mothers caring for children with a chronic illness in Jordan. Results: Data from 164 mothers who cared for children with chronic illness were collected between November 2015 and April 2016 for this descriptive comparative cross sectional study using The World Health Organization Quality of Life – BREF (WHOQOL-BREF) tool and examined the physical, psychological, social relationships, and environment domains of their quality of life. The quality of life of working mothers was significantly lower than those of non-working mothers on all domains of WHOQOL-BREF. Mother’s working status, monthly income, evaluation of their own health explained 41% of the variance; adjusted R2 was 0.41, F= (22.17, 157), P <0.0001 Conclusions: Social, family and employer support may help mothers overcome the challenges of caring for a child with a chronic illness and maintain good QOL. life, mothers,

experience work-related difficulties because of their dual role. About 75% of the caregivers are females and 14% care for their child with a chronic illness (Family Caregiver Alliance, 2018). Female workers may suffer from more economic hardship from caregiving due to alternate work arrangements or taking less paid jobs to fit the schedule (Family Caregiver Alliance, 2018). Therefore, they may choose to take additional jobs to meet their economic demands to cover the cost of caring (Family Caregiver Alliance, 2018). While this is in the context of the United States, similar statistics on caregivers are not available in the Middle Eastern/Arabic or Jordanian context. Chronic illness in children affect the health and QOL of caregivers particularly that of the primary caregivers. Mothers are usually the primary caregivers consequences such as problems with adaptation, stress, depression, and hopelessness were reported in mothers (Delina & Raya, 2013). This can affect their QOL, more significantly if the mother is employed (Vickers, Parris, & Bailey, 2004). Examples of chronic conditions affecting children include inherited diseases, asthma, congenital heart diseases, cystic fibrosis, seizure disorders, and cerebral palsy, and each condition may have a unique impact on the caregivers.

Literature Review QOL definition
Quality of life can be defined as "a state of complete physical, mental, and social wellbeing not merely an absence of disease . . ." (WHO, 2019). QOL may be affected by the person's physical health, psychological state, personal beliefs, social relationships and their relationship to salient features of their environment (WHO, 2019).

QOL of working women in general
Quality of life of working and non-working women had been investigated in the past.
Quality of work-life could determine the overall QOL of women (Bhola & Nigade, 2014). Stevanovic and Rupert found that emotional exhaustion at work can result from family stressors and lack of family support (Stevanovic & Rupert, 2009). Jackson (2013) that 78% of women felt they worked a 'second shift' when they try to fulfill the daily family responsibilities of doing tasks like laundry, cleaning, making dinner, and taking care of the family (Jackson, 2013). Drobnic and Rodriguez (2011) described this as a "double burden" hypothesis. The stress experienced by women who try to balance work and life on an ongoing basis may be aggravated when there is an additional responsibility of caring for a sick child at home. QOL of mothers who care for children with chronic illnesses QOL of mothers of healthy and sick children had been a topic of research for the past few decades. Croatian mothers of healthy preschool children reportedly have a better QOL if they are employed and they remain physically active (Babić, Humer & Sincek, 2015). Cooklin et al., (2015) found that work-life balance may be important particularly in early years of parenting. Single mothers may be even more at a disadvantage (Dziak, Janzen & Muhajarine, 2010). Mothers have reported "doing-it-all" while constantly being disappointed and challenged in their role of rearing a sick child (Vickers, Parris, and Bailey 2004). QOL of working mothers with healthy children may be different from the QOL of those who care for sick children. Caregiver burden and QOL of mothers who care for children with different types of chronic illness had been investigated. Poor QOL had been reported in caregivers of children with tracheostomy (Joseph et al., 2014), autism spectrum disorder (Cadman et al., 2012;Vohra et al., 2013;Miranda et al., 2015), sickle cell disease (van den Tweel et al., 2008), cerebral palsy (Marron et al, 2013) and brain damage (Chronister et al, 2016). Mothers who care for children with a chronic illness were found to have a higher level of anxiety and depression (Özkaya et al. 2010), and disrupted sleep patterns that can influence the mood, and, motor and cognitive functioning (Meltzer and Mindell 2006;van den Tweel et al. 2008). Maintaining the QOL of mothers is vital to meet the demands of her caring role, maintain her physical and mental health, and enable her to meet the physical and emotional needs of the ill child (Goldbeck 2006). The complexity of the situation increases when the mothers, with their additional tasks at home, try to fulfill their professional responsibilities. However, holding a job may be essential to meet their increasing financial demands. Financial instabilities secondary to missed work or leave of absences can affect their QOL (Lawoko, 2003). As women workforce increase globally it is essential to examine the status of Jordanian women who try to achieve work-life balance while caring for their sick child.

Women workforce in Jordan
While the status of women in Arabic culture is a topic of interest, Jordanian women have made significant achievements throughout the years such as higher school enrollment (98%), marriage age of 26.7 years, and a life expectancy of 74.2 years (Jordan Statistical Report, 2016). Despite these achievements and the reduced gender gap in education, Jordan still has one of the world's lowest rates of working women at 17.7%, a rate lower than the average women workforce in the Middle East (Jordan stats, 2016; The world bank data, 2019). Thus, due to low demand, services available for working women such as flexible working hours and availability of child care services are limited in Jordan.
Caregiving identity framework can be used to explain the processes involved in the complex caregiving situation (Montgomery, 2007;Talley & Montgomery, 2013). Family obligations and role expectations in of females/mothers in Jordanian context endorses women as primary caregivers of children with chronic illness. Women are assumed to be gentle and caregiving in nature and nurture. This can physically and emotionally drain them and as the child grows on chronological age, their sense of loss of their dream child aggravates the emotional exhaustion. Educated women desires to have a career future and contribute to the society. They develop their identity as a professional-a teacher, nurse, etc., however, struggles to balance the caregiving role and professional role. In addition, the family may expect her to meet the regular needs of the family -care for household chores, care for parents, siblings and spouse. Mothers may try to negotiate the roles, seek support from family members, or even change jobs to accommodate the caregiving roles [Insert Figure 1 here]. Sometimes the context demands that they quit their jobs to meet the caregiving needs, placing additional financial burden on the family.
Women should have the opportunity to remain in workforce while managing the day-to-day affairs of life and identifying the factors that impact their QOL is essential to develop strategies to support them to balance work, life and caregiving.

Gap in literature and significance of the study
Literature is scant on studies that examined the QOL of mothers -working or non-workingwho care for a chronically ill child in the Jordanian context. The purpose of the study was to examine the difference in the perceived QOL of working and non-working mothers who care for children with a chronic illness. In addition, relationship between mothers' sociodemographic variables and QOL was examined. For purposes of this study the terms 'working women' was defined as women who work outside the home for a regular salary, and 'non-working women' was defined as the women who does not work for a regular salary. The caregiver identify framework will be used to examine the variables and the impact of employment on QOL of caregiving mothers.

Hypotheses:
We set the research hypotheses as: 1.
The QOL of working mothers are significantly lower than that of the nonworking mothers who care for a chronically ill child.

2.
The sociodemographic variables and perceived QOL and health are predictive of the

Data Collection
Mothers who agreed to participate were given a complete description of the study and they signed a consent form. Literate participants self-reported on the data collection form (Demographic and WHOQOL-BREF), while the researcher read the questions for mothers who were illiterate and recorded their responses in the form. All data were collected in hard copy forms and entered in SPSS 20.0. Incomplete or missed data were not encountered as the participants responded to all the items in the questionnaire. The hard copies of data were stored in a locked cabinet in the principal investigator's office.

& 12. Data analysis
Descriptive analysis was used to define the sample characteristics. Independent sample ttest was usedto identify differences in QOL between working and non-working mothers.
Linear regression analysis was used to predict factors influencing QOL of working mothers who care for children with a chronic illness. All assumptions for performing independent ttest on all domains of WHOQOL-BREF were met. Scores of all domains were normally distributed with accepted level of skewness between (-0.44 and -0.062

Risk Factors and Predictors of Quality of Life
A multiple linear regression was performed to examine factors that could predict variance in mothers' QOL score. Six independent variables such as work status, evaluation of their own health, monthly income, education, age of the mother, and the number of family members, were used to perform regression analysis (Table 3). Three variables significantly contributed to the variance in the model. While work status of the mother (β= -7.5, t = -3.59, P=0.001) was related to poor QOL, perception of being in good health (β= 0.38, t= 9.23, P=0.0001) and higher income (β= 0.005, t= 1.90, P=.05) were significantly associated with improved WHOQOL-BREF scores. However, number of family members, mother's education, and mother's age did not significantly contribute to the variance (Table 3).
[ Insert table 3 here] 18. Discussion studies on the prevalence of physician-diagnosed Asthma in the Middle-East was noted as 7.53% (Mirzaei et al.2017). This predicts an increasing rate of Asthma affecting more families, particularly the mothers. Exacerbations in Asthma in the child may result in the mother's absenteeism from work, lower her financial potential, and poor life satisfaction from poor productivity, as well as emotional tension from having a sick child. While Sadeghifard et al., (2013) identified family functions, collaboration and power structure predictive of the QOL of women, they did not find any significant difference in the QOL scores of working and non-working women (df= 260; p.682). However, they identified healthier family functions exist among the working women (p=0.005). It is understood that success of Asthma management is achieved by building on the family strength and resources (Crespo et al., 2011). Social and family support are essential for improving the QOL of these mothers.
Hypotheses 2: The sociodemographic variables and perceived QOL and health are predictive of the QOL of mothers caring for a chronically ill child.
Three variables in this study could predict the QOL of mothers: being a working mother, the mothers' evaluation of their QOL and general health, and monthly income. The mother's evaluation of perceived overall QOL and general health was 0.38 indicating a 0.38 increase in QOL scores for one-unit increase in mother's perception of her own QOL and the QOL of working mothers were 7.7 times lower than that of non-working mothers.
Overall lower WHOQOL-BREF scores may be the result of overwhelming responsibilities and a struggle to balance work and life. Current trend in Jordan to minimize inpatient hospital days and manage the sick child at home requires more involvement of mothers in the care of their children and may require time away from work thereby lowering the income (Guo et al. 2015, Koehler et al. 2014. Furthermore, families experience financial burden caused by the recurrent attacks of chronic illnesses requiring unpredictable emergency room visits (Koehler et al. 2014, Fagnano et al. 2012). This financial burden forces mothers to remain employed, while they may have to be absent form work or change jobs to meet the urgent care needs of the child.
With regard to the psychological domain working mothers reported lower mean score than the non-working mothers. This aligns well with the findings of other researchers who reported that psychosocial determinants are more crucial in predicting parental QOL than medical and demographic variables (Hatzmann et al. 2009, Fidika, Salewski, & Goldbeck 2013. In a systematic review on QOL of parents caring for children with Asthma involving 22 studies, Ekim and Ocakci (2016) found that providing higher level of care to child can be burdensome and have negative effect on the physical and psychosocial health of caregivers. The review supports the findings of this study that the QOL of caregivers is lower. The review identifies the importance of determining caregiver burden risks and protective factors so that interventional studies can be initiated to improve their QOL. Support for proper disease management and workplace strategy to support the mothers may be helpful in improving their QOL. In the meantime, healthcare professionals should pay structural attention to working mothers' functioning and wellbeing.
Application of the caregiver identity framework in this context tested the hypotheses and the burden of balancing job and caregiving beyond the routines of life may affect the QOL and health of mothers. The interconnectedness of the social, demographic, work-related and perception do of the mothers were predictive of the physical, emotional, social and environmental domains of QOL as measured by the WHOQOL-BREF.

Limitations
This study has several limitations. Not all mothers were literate; some mothers selfreported while others gave oral response which were transcribed. The comprehension of the questions might have varied due to the method of data collection. In addition, those mothers who were giving verbal response might have given responses that are socially acceptable. The level of understanding of the items in the tool by those who self-reported also might have been varied. The sample size was small; therefore, further studies to confirm the findings are essential prior to generalization.

Interpretation and Implications for practice, education, research and policy
Nurses can plan and implement care for children with chronic illnesses incorporating the social and psychological needs of the family. Special emphasis must be placed on the role of fathers in supporting the mothers in caring for their ill children, thus decreasing the burden of mothers. Until adequate support systems are available, health care professionals should acknowledge the mothers' feeling of 'caregiver burnout', so that support can be offered as the mothers try to balance their work and care for their sick children (Kidshealth, 2019

Other information
Funding: This study did not receive any funding.
Authors' contributions: 'HG' (75% of work; Literature review, methods, analysis, discussion); 'MG' (25% of the work; introduction, discussion, and conclusion). All authors have read and approved the manuscript.   evaluation of health, Monthly income mother education, Numbers of family members, and mother age. Dependent variable: total quality of life. Figure 1 Caregiver Identify Framework in the context of working mothers.