|Year : 2020 | Volume
| Issue : 4 | Page : 144-151
Psychosocial burden of caregivers taking care of children in the children's emergency room of two tertiary hospitals in Southeast Nigeria
Ikenna K Ndu1, Chidiebere D I Osuorah2, Ezinne I Nwaneli3, Uchenna Ekwochi1, Isaac N Asinobi1, Kenechukwu K Iloh4, Obinna C Nduagubam1
1 Department of Paediatrics, Enugu State University of Science and Technology, Ituku/Ozalla, Enugu State, Nigeria
2 Child Survival Unit, Medical Research Council UK, The Gambia Unit, Fajara, Gambia
3 Department of Pediatrics, Faculty of Medicine, Nnamdi Azikiwe University, Nnewi Campus, Anambra State, Nigeria
4 Department of Pediatrics, College of Medicine, University of Nigeria, Ituku/Ozalla, Enugu State, Nigeria
|Date of Submission||07-Jul-2020|
|Date of Decision||11-Aug-2020|
|Date of Acceptance||12-Aug-2020|
|Date of Web Publication||8-Sep-2020|
Chidiebere D I Osuorah
Child Survival Unit, Medical Research Council UK, the Gambia Unit, Fajara
Source of Support: None, Conflict of Interest: None
Introduction: In this study, we sought to determine the severity of caregiving burden among caregivers of children presenting to the emergency room and analyze its associated predictors. Methods: This was a cross-sectional, study carried out on 332 caregivers of children admitted into the children emergency room (CHER) of two tertiary hospitals in Southeast Nigeria. A validated structured questionnaire was administered by an interviewer with the use of an interpreter where necessary. Results: A total of three hundred and thirty-two child–caregiver dyads were enrolled for this study. Fathers were 25.6%, mother 65.4%, and nonparent made up 9.0% of primary caregivers of child in index admission. The mean age of the enrolled children was 2.5 ± 1.9 years with age ranges of 1 month to 16 years. Male-to-female ratio was approximately 0.8. Two hundred and fifty-four (80.6%) of surveyed caregivers experienced high psychosocial burden. On the average, caregivers were faced with moderate burden in the CHER during care of their sick child with a mean caregiver burden score of 1.64 ± 0.67. Caregivers looking after independent children (odds ratio [OR]: 0.1, 95% confidence interval [CI]: 0.2–0.9; P = 0.05), partially dependent children (OR: 0.2, 95% CI: 0.3–0.9; P = 0.040), and those with someone assisting them in the care of admitted and/or children at home (OR: 0.5, 95% CI: 0.2–1.0; P = 0.050) were less likely to experience high psychosocial burden of care as compared with caregivers looking after dependent children and those with no assistance. Conclusion: There is a need to incorporate comprehensive psychosocial and instinctive support for caregivers during the care of their sick children in the emergency room.
Keywords: Caregivers, children, emergency room, psychosocial burden
|How to cite this article:|
Ndu IK, Osuorah CD, Nwaneli EI, Ekwochi U, Asinobi IN, Iloh KK, Nduagubam OC. Psychosocial burden of caregivers taking care of children in the children's emergency room of two tertiary hospitals in Southeast Nigeria. Soc Health Behav 2020;3:144-51
|How to cite this URL:|
Ndu IK, Osuorah CD, Nwaneli EI, Ekwochi U, Asinobi IN, Iloh KK, Nduagubam OC. Psychosocial burden of caregivers taking care of children in the children's emergency room of two tertiary hospitals in Southeast Nigeria. Soc Health Behav [serial online] 2020 [cited 2020 Oct 29];3:144-51. Available from: https://www.shbonweb.com/text.asp?2020/3/4/144/294536
| Introduction|| |
Caring for an ill child in an emergency room setting is a challenging task for family caregivers. Family caregivers are those individuals who provide the majority of the patient's physical, emotional, financial, and social care needs throughout the continuum of care, from being hospitalized to providing care at home, without receiving any remuneration. In the United States, nearly three in ten households have at least one person providing unpaid care as a family caregiver with an estimated 16.8 million caring for special needs children under 18 years of age., The value of the services family caregivers provides for “free” is estimated to be $375 billion a year.
Family caregivers have been described as “forgotten patients” and it was suggested that caregiver's symptoms such as mood swings, fatigue, headaches, joint and muscle pains, marital and family conflicts, and financial problems may be a reflection of caregiver stress in looking after a sick relative. Family caregivers experiencing extreme stress have been shown to age prematurely and this level of stress can take as much as 10 years off a family caregiver's life. Several studies have documented associations between parenting stress and adverse psychological sequelae for both caregiver and child.,,,,, For instance, there was a significant association between mothers of children with sickle cell disease (SCD) and burden in the areas of finance, time consumption, and hindrance from enjoyment of life. These mothers were also more likely to overprotect their children. In another study, parenting stress was shown to moderate the relationship between perceived vulnerability and depressive symptoms in youths with diabetes. The psychosocial burden of illness is dynamic since a change in activity to modify or reduce a burden may simultaneously create more burdens. For instance, the mother of a SCD patient may take an extra job to reduce the financial burden of the disease with the increased risk of increased physical, emotional, and social neglect of her family and ultimately marital discord.
The emergency room visit with a sick child is inherently stressful for parents. Anxiety over the child's illness and perceived long wait times have been identified as the most influential factors related to causes of stress in children emergency rooms (CHERs). However, the parental burden resulting from caring for children and adolescents in emergency rooms has received little attention and it is rarely quantified as to ascertain any need for intervention.
This study therefore aims to determine the severity of caregiving burden among caregivers of children presenting to the emergency room. This will enable health workers anticipate caregiver concerns and provide improvements in formal support systems.
| Methods|| |
This cross-sectional survey was carried out at the CHER of two tertiary health institutions in Southeast Nigeria over a 6-month period (January 2020–June 2020). The CHER at the Enugu State University Teaching Hospital (ESUTH) and Nnamdi Azikiwe University Teaching Hospital serves as a referral center for specialized children care from lower level health-care facilities in both Enugu state and Anambra state and their neighboring communities. The unit is staffed by resident doctors training to specialize in pediatrics and pediatric consultants. Most caregivers usually alternate with other caregivers and/or shuttle between their homes and the hospital to provide psychosocial care and supplies needed for the care of their sick children.
Sampling and data collection
Respondents in this study were primary caregivers defined for the purpose of this study as anyone mainly and solely responsible for the care of the sick child when on admission in CHER. The study participants were recruited consecutively. The caregivers of the children were approached after they had been seen by their physician and admitted into the CHER. The study was described to them and informed consent was obtained. A validated structured questionnaire was administered by an interviewer with the use of an interpreter where necessary. The sociodemographics characteristics of the caregiver and details of the child's illness and admission were collected. The caregiver's relationship with the recipient of the care and the availability of medical insurance for the child was also obtained. To measure the psychosocial burden of a child's illness on the caregiver, information pertaining to the caregiver's emotional well-being such as feelings of physical strain, anger, embarrassment, loneliness, lack of control over their situation, and impact of the admission on their social life and their relationship with the child, family, and friendswere obtained. Their responses to these questions were obtained using a 5-point Likert scale. This scale was rated as 0 (never), 1 (occasionally), 2 (often), 3 (very frequently), and 4 (nearly always). These responses were quantified and further recategorized as never (no burden at all), occasional (mild burden), often (moderate burden), very frequently (severe burden), and nearly always (extreme burden) [Table 1].
|Table 1: Summary of measure used in the categorization of study parameters|
Click here to view
Data analysis was done using the IBM® SPSS version 25.0 (IBM SPSS Statistics for Windows, Version 25.0. Armonk, NY: IBM Corp). Descriptive and inferential analyses were used to explore the effect of the financial status of the caregivers, medical insurance, duration of admission in the hospital, independence of the sick child, availability of helper, and number of other children in the family on the psychological and social burden of the caregivers. The analysis of variance and Students t-test where appropriate were applied to examine for sociodemographic predictors of caregiver's burden in the care of their sick wards. P ≤ 0.05 was considered statistically significant.
Ethical clearance and permission for the research were obtained from the Ethical Committee of ESUTH, Parklane Enugu, with ethical clearance number: ESUTHP/C-MAC/RA/034/VOL. 1/274.
| Results|| |
Sociodemographics of study participants
[Table 2] summarizes the characteristics of study participants. A total of three hundred and thirty-two child–caregiver dyads were enrolled for this study. The mean age of the enrolled children was 2.5 ± 1.9 years with age ranges of 1 month to 16 years. Children <1year made up 19.6%, whereas those between 1 to <5years and ≥5 years were 76.8% and 3.6% of enrolled dyads, respectively. Male-to-female ratio was approximately 0.8. At the time of enrollment, the majority of the enrolled children (78.8%) had been on admission for ≤2 days in the CHER, while 21.2% had been admitted for ≥3 days. About a third, 101 (30.6%) of the admitted children were totally dependent on caregiver's assistance for activities of daily living and 12.7% were completely independent. Slightly over half (56.7%) of the enrolled children were partially dependent. During index visit to the CHER, mothers were the primary caregivers in 65.4% of children admitted. Fathers and other nonparent caregivers such as aunties, grandparents, and friends made up 25.6% and 9.0% of primary caregivers. All but 10 (3.0%) of the primary caregivers encountered were from the Igbo tribe. Majority (84.3%) of the enrolled children were married and approximately half (48.6%) had postsecondary education as their highest educational attainment.
|Table 2: Sociodemographic characteristics of surveyed children and primary caregivers in the children emergency room|
Click here to view
Fifty-eight (20.6%) of the primary caregivers enrolled were unemployed, 101 (35.8%) were self-employed, and the remaining 123 primary caregivers were employed; 18.8% of these were in unskilled and 24.8% in skilled employment. Total monthly family income was <N50,000 (~US$ 130) in 22.5%, N50,000 (~US$ 130) to N100,000 (~US$ 260) (40.1%), N100,000 (~ US$ 260) to N200,000 (~US$ 520) (25.2%), and >N200,000 (~US$ 520) in 12.2% of the families enrolled. One hundred and three (31.0%) of families had ≤1 other child at home, 159 (47.9%) had 2–3, and 70 (21.1%) had ≥4 other children at home. Fifty-seven percent and 43.0%, respectively, of the primary caregivers had another reliable person that assisted in the care of the sick child and/or other children at home. A vast majority (77.9%) of the surveyed families had no medical insurance and 81.3% of the primary caregivers had no extraneous financial support for hospital expenses in index admission [Table 2].
Caregiver burdens and sociodemographic characteristics
[Table 3] summarizes the responses of caregivers in the evaluation of burden encountered in the care of the sick child. All except one of the participants faced at least one or more factors that assessed caregiver's burden in our study. One (0.3%) had no burden at all, 60 (19.2%) had mild burden, 159 (50.8) had moderate burden, 88 (27.5%) had severe burden, and 7 (2.2%) had extreme burden of care. The overall caregiver mean burden score (MBS) was 1.64 ± 0.67 with a minimum and maximum score of 0.0/4 and 3.6/4, respectively. [Table 4] shows the caregiver's MBS stratified by sociodemographic factors considered in this study. Caregivers looking after female children had a higher MBS (1.72 ± 0.66) compared to those looking after male children (1.55 ± 0.67; P = 0.021). Similarly, MBS was higher in caregiver looking after children 1 to <5years (1.80 ± 0.64) compared to <1year (1.09 ± 0.5) and ≥5 years (1.37 + 0.31), P = 0.001. It was also noted that nonparents' caregivers (2.07 ± 0.52) had significantly higher MBS compared to primary caregivers who were fathers (1.87 ± 0.61) or mothers (1.50 ± 0.67) of the sick child (P = 0.001). Finally, caregivers who were married, 1.58 ± 0.67 (vs. nonmarried, 2.01 ± 0.57; P = 0.001); caregivers with skilled employment, 1.49 ± 0.66 (vs. unemployed caregivers, 1.56 ± 0.72 vs. self-employed, 1.70 ± 0.62 vs. unskilled workers, 1.78 ± 0.55; P = 0.042); caregivers of functionally independent children, 1.49 ± 0.68 (vs. partially dependent, 1.68 ± 0.71 versus totally dependent, 1.92 + 0.49; P = 0.001); and caregivers with shorter hospital stay, 1.51 + 0.62 (vs. ≥3 days, 1.74 + 0.63; P = 0.001) had significantly lower MBS compared to those is the corresponding subcategories. Other demographics subcategories showed no significant difference in MBS encountered by caregivers [Table 4].
|Table 3: Caregiver burden responses among primary caregivers of children admitted to the children emergency room of study site|
Click here to view
|Table 4: Mean caregiver burden score stratified based on sociodemographic parameters of respondents|
Click here to view
Predictors of caregiver's burden among respondents
[Table 5] shows binary logistic regression analysis of caregivers' burden and sociodemographic characteristics of respondents. After adjusting for confounders considered in our study, only functional status of the admitted child and availability of a helper to assist the primary caregivers in the care of the sick and/or other children significantly predicted the degree of burden caregivers faced. Caregivers looking after independent children (odds ratio [OR]: 0.1, 95% confidence interval [CI]: 0.2–0.9; P = 0.05) and partially dependent children (OR: 0.2, 95% CI: 0.3–0.9; P = 0.040) were 0.1 and 0.2 times less likely to face high burden of care compared to those taking care of totally dependent children, respectively. Put differently, caregivers looking after totally dependent children were 10 and 5 times, respectively, more likely to encounter high caregiver burden compared to those looking after independent and partially dependent children. Similarly, caregivers with someone assisting them in the care of admitted and/or children at home were 0.5 times less likely to face high burden of care compared to those with no assistance (OR: 0.5, 95% CI: 0.2–1.0; P = 0.050). Finally, caregivers looking after female children (vs. male OR: 0.4, 95% CI: 0.2–1.0; P = 0.056), nonparent caregivers (OR: 1.5, 95% CI: 0.01–2.7; P = 0.980), caregivers that are not married (OR: 2.6, 95% CI: 0.3–30.1; P = 0.451), caregivers with lower educational attainment (primary or lower, OR: 2.3, 95% CI: 0.2–25.4; P = 0.512), and caregivers that are not employed (OR: 2.2, 95% CI: 0.7–7.1; P = 0.188) were all more likely to encounter high caregiver burden compared to those in their corresponding subcategories. None of these however attained statistical significance, P > 0.05 [Table 5].
|Table 5: Binary logistic regression analysis of high caregiver burden and sociodemographic characteristics|
Click here to view
| Discussion|| |
Our study showed that the majority of caregivers faced high psychosocial burdened during their stay in the CHERs. This is not surprising as it has been documented that virtually all family caregivers experience a myriad of symptoms which are adjudged to be reflective of caregiver stress in looking after a sick relative.
We reported that caregivers looking after female children had a higher burden compared to those looking after male children. The reason for this finding is not immediately clear. We speculate that the girl child being more emotionally expressive and dependent, may be more challenging to cater for especially during ill-health. A gallop poll conducted by Jeff Jones and Lydia Saad in June 2018 on 1520 adults in the 50 states of the United States showed that a vast majority (54%) of respondents believed that it was easier to take care of a male child than a female child. This conclusion, against the background of ill-health, may pose even more challenges to the caregivers. A better powered study may however be needed to elucidate this hypothesis.
It was also seen that it was psychologically more stressful looking after sick children between the ages of 1 and under-5 years compared to children in other age categories. An internet-based study of over 2200 mostly well-educated mothers with children ranging from infants to adults, which examined multiple aspects of mothers' personal well-being, parenting, and perceptions of their children, reported that mothers of middle schoolchildren (12–14 years) fared most poorly compared to mothers of adult children and infants regarding care of their children. These findings are not in keeping with our observation probably because the focus in the referenced study were healthy children. We are of the opinion that because most disease conditions are of worst severity and/or outcome in children under the age of 5 years, this may cause caring for them during illness more challenging and consequently. more stressful to parents and/or caregivers.
Our study additionally noted that nonparents' caregivers had considerably more burden of care compared to caregivers who were parents. This is understandable given that parents whose sole responsibility is to look after their children in health and sickness will be less likely to be burdened by the stress of caregiving and how it affects their daily living but will be more preoccupied with the recovery and wellbeing of their offspring compared to nonparents. In the same vein, mothers were noted to face less level of burden than fathers which is also conceivable as mothers being mommies fit naturally into caregiver role than fathers in our environments and most developing climes. Correspondingly, caregivers who were married had lower psychosocial burden compared to unmarried ones. Being married probably provides an opportunity for shared burden of care between parents of a sick child. This may explain a related finding in this study that showed caregivers with someone assisting them in the care of admitted and/or children at home were less likely to face high burden of care compared to those with no assistance. Social support, family function and care-giving experience could mediate the relationship between patient factors and caregiver burden.
Furthermore, we found that caregivers with skilled employment had significantly lower care burden compared to those in the corresponding subcategories. This is probably connected with the financial stress associated with being a caregiver.,,,,,,,,,,,,,,,,,,, Adelman and colleagues found that caregiver burden was greater in caregivers who had incurred financial stress. Similar findings were also reported for those who care for stroke survivors. Skilled employment in most environments offers relatively higher financial rewards. This could imply that a caregiver with skilled employment will be better disposed to handle the financial problems associated caregiving hence a comparatively lower level of stress.
Finally, analysis showed that caregivers of functionally independent children had lower burden of care compared to those looking after totally dependent children. This finding is in keeping with earlier studies. In the study by Yu et al., patients with lower cognitive function with resultant high level of dependence were reported to pose increased burden to caregivers. The reason for this is obvious as caregivers of functionally dependent patients are further burdened with daily routine upkeeps of their sick child. On this premise, we strongly recommend that hospitals should employ designated staff to assist in the care of this category of patients while on admission. Lastly, caregivers with shorter hospital stay had significantly lower stress level compared to those who had stayed 3 or more days in CHER. Earlier studies have also associated longer hours of care-giving with increased caregiver burden.,, Studies on adults with dementia and stroke survivors also reported that burden was greater in caregivers who spent more time care-giving.,, A similar study on newborn nursery has shown lesser burden among caregivers of babies admitted for 7 days or less. It stands to reason that the longer the hospital stay, the higher the associated financial and nonfinancial related stress on the caregivers. For this reason, hospitals should aim at shortening the length of hospital stay of patients as much as possible.
One key limitation of this study is the cross sectional design which limited our ability to follow up caregivers throughout their entire stay in the CHER to observe changes in degree of burden with changes in the medical condition of the sick child and economic situation of the families. In addition, because we did not factor in the disease conditions for which the children were admitted to CHER and its severity, we may have missed an important element that could potentially contribute to the burden of care among caregivers. We therefore recommend that the findings of this study be interpreted in the light of these limitations.
| Conclusion|| |
We conclude that there is significant psychosocial burden on caregivers taking care of their sick wards in the children emergency. There is therefore need for hospital management and other stakeholders in the health system to incorporate or intensify comprehensive aid programs that would support caregivers both physically, socially, and mentally during the care of their sick children in the emergency room.
Conflicts of interest
There are no conflicts of interest.
| References|| |
Collins LG, Swartz K. Caregiver care. Am Fam Phys 2011;83:1309.
Family Caregiver Alliance. Caregiver Assessment: Principles, Guidelines and Strategies for Change. Report from a National Consensus Development Conference. Vol. 1. San Francisco, Calif.: Family Caregiver Alliance; 2006.
Caregiving in the United States; National Alliance for Caregiving in Collaboration with AARP; November, 2009.
Evercare Survey of the Economic Downturn and Its Impact on Family Caregiving; National Alliance for Caregiving and Evercare; March, 2009.
Medalie JH. The caregiver as hidden patient: theory and research on health care triads. J Health Soc Behav 1994;35:1-2.
Epel ES, Blackburn EH, Lin J, Dhabhar FS, Adler NE, Morrow JD, et al
. Accelerated telomere shortening in response to life stress. Proc Natl Acad Sci U S A 2004;101:17312-5.
Cousino MK, Hazen RA. Parenting stress among caregivers of children with chronic illness: A systematic review. J Pediatr Psychol 2013;38:809-28.
Mullins LL, Fuemmeler BF, Hoff A, Chaney JM, Van Pelt J, Ewing CA. The relationship of parental overprotection and perceived child vulnerability to depressive symptomatology in children with type 1 diabetes mellitus: The moderating influence of parenting stress. Children's Health Care 2004;33:21-34.
Tunde-Ayinmode MF. Psychosocial impact of sickle cell disease on mothers of affected children seen at University of Ilorin Teaching Hospital, Ilorin, Nigeria. East Afr Med J 2007;84:410-9.
Holm L, Fitzmaurice L. Factors influencing parent anxiety levels in a pediatric emergency department waiting area. Pediatr Res 2004;56:672.
Embong H, Ting CY, Ramli MS, Harunarashid H. Heightened anxiety state among parents of sick children attending emergency department using State-trait anxiety inventory. Hong Kong J Emerg Med 2018;27:65-70.
Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist 1980;20:649-55.
Chaplin TM, Aldao A. Gender differences in emotion expression in children: A meta-analytic review. Psychol Bull 2013;139:735-65.
Zahn-Waxler C, Cole PM, Barrett KC. Guilt and empathy: Sex differences and implications for the development of depression. In: Garber J, Dodge KA, editors. The Development of Emotion Regulation and Dysregulation. Cambridge, UK: Cambridge University Press; 1991. p. 243-72.
Luthar SS, Ciciolla L. What it feels like to be a mother: Variations by children's developmental stages. Develop Psychol 2016;52:143-54.
Yu H, Wang X, He R, Liang R, Zhou L. Measuring the caregiver burden of caring for community-residing people with Alzheimer's Disease. PLoS One 2015 10:e0132168.
Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: A clinical review. JAMA 2014;311:1052-60.
Jaracz K, Grabowska-Fudala B, Górna K, Jaracz J, Moczko J, Kozubski W. Burden in caregivers of long-term stroke survivors: Prevalence and determinants at 6 months and 5 years after stroke. Patient Education and Counseling 2015;8:1011-6.
Yusuf AJ, Adamu A, Nuhu FT. Caregiver burden among poor caregivers of patients with cancer in an urban African setting. Psycho Oncol 2011;20:902-5.
Kidman R, Tonya R. Thurman caregiver burden among adults caring for orphaned children in rural South Africa. Vulnerable Children Youth Stud 2014;9:234-46.
Ekwochi U, Asinobi IN, Ifediora C, Ndu IK, Onah SK, Amadi OF, et al
. caring for the sick newborns in nurseries in a developing setting: Evaluation of the psychosocial burden on caregivers, J Clin Neonatol 2020;9:69-76.
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]