|ORIGINAL RESEARCH REPORT
|Year : 2023 | Volume
| Issue : 1 | Page : 8-14
Psychological burden of care in parents/caregivers of children with surgical conditions – A local experience
Olumide Abiodun Elebute1, Elizabeth A Campbell2, Adesoji O Ademuyiwa1, Chibuike George Ihediwa1, Christopher O Bode1
1 Department of Surgery, Lagos University Teaching Hospital, Lagos, Nigeria
2 Department of Psychiatry, Lagos University Teaching Hospital, Lagos, Nigeria
|Date of Submission||14-Nov-2022|
|Date of Acceptance||08-Mar-2023|
|Date of Web Publication||29-Mar-2023|
Dr. Olumide Abiodun Elebute
Department of Surgery, Lagos University Teaching Hospital, Surulere, Lagos
Source of Support: None, Conflict of Interest: None
Background: There is a paucity of literature on the psychological burden on parental caregivers of children with surgical conditions. Knowledge of the peculiar psychological challenges faced by the parents or caregivers could help to advocate for the incorporation of a psychologist or psychiatrist as part of a multidisciplinary approach to patient care. Methods: This is a cross-sectional study over 6 months on caregivers of pediatric surgical patients at the Lagos University Teaching Hospital. Zarit Caregiver Burden Scale (ZCBS) and the General Health Questionnaire – 28 (GHQ-28) were used to obtain data on the burden of care and psychiatric morbidity. Data obtained were analyzed using SPSS (version 23). A ZCBS score ≥21 and a GHQ-28 value above 4 were considered significant. Results: A total of 120 caregivers were recruited for the study. The mean GHQ score was 6.3 (standard deviation [SD] ±5.9), whereas the mean ZCBS was 24.96 (SD ± 14.67). Sixty (50.0%) caregivers had a GHQ score over 4 and 71 (59.2%) had a ZCBS score ≥21. Conclusions: The care of children undergoing surgical procedures is associated with a significant burden and psychological distress among first-degree family caregivers. There is a need for further studies to know the pattern of their psychologically ill health as this could impede their quality of care.
Keywords: Burden, care, pediatric, parental, psychological, surgery
|How to cite this article:|
Elebute OA, Campbell EA, Ademuyiwa AO, Ihediwa CG, Bode CO. Psychological burden of care in parents/caregivers of children with surgical conditions – A local experience. J Clin Sci 2023;20:8-14
|How to cite this URL:|
Elebute OA, Campbell EA, Ademuyiwa AO, Ihediwa CG, Bode CO. Psychological burden of care in parents/caregivers of children with surgical conditions – A local experience. J Clin Sci [serial online] 2023 [cited 2023 Jun 2];20:8-14. Available from: https://www.jcsjournal.org/text.asp?2023/20/1/8/372690
| Introduction|| |
Caregivers' burden is defined as the discomfort experienced by the principal caregiver of a family member, including their health, psychological well-being, finances, and social life. A caregiver in this context is defined as one who provides unpaid care for a sick child and has an established relationship, whether biologically or by friendship. Most of the existing literature relates to parents having children with medical disabilities such as cerebral palsy while a few cite parents having children with cancers.,, There is a paucity of literature on the psychological burden in caregivers of children with surgical conditions. A surgical condition in this context is any disease that would require surgical intervention as its prime treatment.
The presence of a sick child in the family is distressing; most especially if the child has a disorder that requires continuous care, surgery, and repeated hospitalization. Surgery has been associated with distress and strong psychological reactions in patients and caregivers due to anticipated pain and physical discomfort and worries concerning anesthesia and fears about having cancer or dying. These have been documented to adversely influence surgical procedures as well as the patient's recovery, even in surgeries that physicians consider “minor.” Knowing the obvious, yet important role that parents play in the management of children with surgical conditions, it would be germane to have an insight into the burden of care on caregivers. Aside from ascertaining the nature of these psychological burdens, such knowledge would enable the primary physician to proffer the appropriate psychological support to parents so that they could successfully scale over the psychological hurdle posed by their child's disease. Furthermore, knowledge of the peculiar psychological challenges faced by parental caregivers would serve as a platform to advocate for the incorporation of psychologists or psychiatrists as part of a multidisciplinary approach to patient care, particularly in centers lacking psychological facilities or support. This study, therefore, sets out:
- To determine the prevalence of psychiatric morbidity among caregivers of pediatric patients undergoing surgery
- To determine the burden of care among caregivers of pediatric patients undergoing surgery
- To determine the correlation between psychiatric morbidity and the burden of care of caregivers.
| Methods|| |
Study design and location
The study was a cross-sectional, questionnaire-based study over 6 months that took place at the Lagos University Teaching Hospital (LUTH), a federal tertiary health institution within the Lagos Metropolis, Nigeria, that caters for a teeming population of 20 million.
Study population and sampling
The questionnaire was administered consecutively to consenting caregivers of pediatric patients who had been operated on and were attending the outpatient pediatric surgery clinic and caregivers of postoperative patients within the pediatric surgical ward.
The inclusion criteria were listed below
- Caregivers of patients who had surgery within 1 month, irrespective of the type of surgery
- Those who agreed to give written consent
- The caregiver was at least 18 years of age.
Exclusion criteria were listed below
- Subjects with overt psychiatric illnesses
- Caregivers who refused to give consent.
All eligible caregivers seen were serially recruited during the study period. Data obtained were entered into a standard proforma. Baseline demographic and clinical data were obtained by direct questioning and from records in the case note. Demographic variables such as age, gender, level of education, occupation and marital status of caregivers and age, and the gender of the patient were entered into the proforma. Besides, clinical information on the duration of illness, type of surgery, other forms of treatment, and the presence of other comorbid medical conditions was obtained. Questions relating to how the caregiver was adjusting to the patient's illness and covering areas such as the affection of family life, work, mobility, and sexual life were also asked.
The General Health Questionnaire –28 (GHQ-28 or GHQ) and the Zarit Caregiver Burden Scale (ZCBS) were used to obtain data on psychiatric morbidity and the burden of care, respectively. The ZCBS and the GHQ were chosen because of their ease of use and conciseness.
The ZCBS consists of 22 items, each with a corresponding 5-point Likert scale, ranging from 0 (never) to 4 (nearly always). It assesses the caregiver's perceptions of the burden that may inadvertently affect their health and personal, social, or financial well-being. There are four subscales. The first subscale A assesses somatic symptoms. Subscales B and C check for anxiety and social dysfunctions, respectively. The last subscale D addresses severe depression. The total score is most often used and higher scores denote a greater burden. The maximum score attainable is 88 and a score ≥21 is regarded as significant.,,,, The internal consistency of this instrument has been judged excellent with values of Cronbach's alpha of 0.89 being reported and it has been deployed in a similar study in Nigeria involving caregivers of children with attention-deficit hyperactivity disorder.,
The GHQ-28 on the other hand is a 28-item instrument used in ascertaining psychological well-being and detecting possible cases of psychiatric disorders (psychiatric morbidity)., It has been used in several studies in Nigeria and has been validated with high sensitivity and specificity in Nigerian subjects.,, One additional advantage of the GHQ is that it focuses on the respondent's current state and is, therefore, sensitive to short-term psychiatric disorders. It consists of 28 questions, with four subscales which assess the presence of somatic symptoms (questions 1–7), anxiety disorders (questions 8–14), social dysfunction (questions 15–21), and depressive symptoms (questions 22–28)., There are two different ways to score responses using this instrument. These are the '0–1–2–3' method and the binary or '0–0–1–1' method. For the former, responses are on a Likert scale, “Better than usual,” Same as usual, “Worse than usual,” and Much worse than usual, and are serially scored from 0 to 3. With the latter method, responses falling within the first and the second Likert scales are accorded a score of 0, and the last two Likert column responses are registered as 1. The maximum score using the first method is 84, whereas 28 is the highest score attainable using the binary method of calculation. The GHQ-28 has been used as a screening test for the presence of psychiatric problems and an overall value greater than the cutoff of 4, using the binary method calculation, indicates the need for further psychological or psychiatric evaluation.,,,
Data obtained were analyzed with SPSS version 23 (IBM SPSS Statistics for Windows, Armonk, NY: IBM Corp). Continuous variables were expressed as means and compared using the Student's t-test. Categorical variables were compared using the Chi-square test. Pearson's correlation was used to determine the relationship between psychiatric morbidity, sociodemographic, and clinical variables.
Ethical approval was obtained from LUTH Health Research Ethics Committee. The study did not interfere with the patient's treatment and it was noninvasive in its design.
Informed consent for enrolment into the study was obtained from each parental caregiver, each of whom had been properly briefed and told that declining to participate in the study would not jeopardize the care of their child. Confidentiality of information was assured.
| Results|| |
A total of 120 caregivers were recruited for the study. The administration of the questionnaires took an average of 20 min/participant.
Sociodemographic and socioeconomic details of parents/caregivers
The mean age of respondents was 34.7 ± 7.7 years. The female-to-male ratio was 7.6:1. Over 90% of those recruited in the study were married and most had a college education. One hundred and fourteen (95.0%) of the parents were divided along the two mainstream religions – Christianity, 93 (77.5%) and Islam, 21 (17.5%) [Table 1]. Seventy (58.4%) were employed and 51 (42.5%) received monthly emoluments below a hundred dollars.
Sociodemographic details of the patients
Seventy-four (61.5%) were males and 71 (59.1%) were less than a year old. Forty-two percentage were firstborns. Seventy-five (62.5%) of the patients to which the caregivers were attached were managed for acquired conditions and in 74 (61.7%), the duration of the illness was less than a month before presentation. Fifty-five (72.0%) were indications for major corrective surgeries and 119 (99.2%) had general anesthesia during the surgery.
Psychological assessment of parents/caregivers
Sixty-eight percentage of caregivers or parents admitted that their child's illness had its toll on their leisure (82; 68.3%). A significant number received some form of social support from other family members (76; 63%). The mean GHQ score was 6.3 (standard deviation [SD] ±5.9), whereas the mean ZCBS was 24.96 (SD ± 14.8). Sixty (50.0%) caregivers had a GHQ score in excess of 4 while 71 (59.2%) had a ZCBS score ≥21. There was a positive weak correlation between the GHQ-28 and Zarit Burden Scale (r = 0.263; P = 0.01). No statistical significance was observed between psychological scores and the duration of illness of a child (GHQ-28 P = 0.943; Zarit P = 0.427), parental marital status (GHQ-28 P = 0.806; Zarit P = 0.895), the sex of the caregiver (GHQ-28 P = 0.315; Zarit P = 0.571), or employment status of the caregiver (GHQ-28 P = 0.913; Zarit P = 0.430) [Table 2], [Table 3], [Table 4], [Table 5]. There was statistical significance between the diagnosis and the GHQ score (r = 0.289; P = 0.002) [Table 4]. No statistical significance was, however, demonstrated between this variable and Zarit burden score (P = 0.165) [Table 5].
|Table 2: Relationship between sociodemographic/socioeconomic characteristics of caregivers and psychiatric morbidity|
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|Table 3: Relationship between patient's factors and psychiatric morbidity of caregivers|
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|Table 4: Relationship between sociodemographic characteristics of carers and psychological burden|
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|Table 5: Relationship between patient's factors and psychological burden of carer|
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| Discussion|| |
Most of the respondents in our study were females (88%). This finding is consistent with other studies where the burden of care for the sick child rests squarely on the shoulders of the mothers. We agree with the explanation proposed by Babalola et al. that this is most probably tied to the age-old African belief that views women as home keepers and men are accorded the role of breadwinners. We did not observe any statistical significance between the psychological burden of caregivers and their demographic details as observed in Rosenberg's et al. study. Both our study and Rosenberg's contrast that of Mashayekhi et al., who observed some statistical significance between the psychological burden of caregivers and the demographic details of the parents. The results obtained from Mashayekhi's study may not be unconnected to the fact that caregivers in his study were predominantly males in sharp contrast to our studies. Furthermore, of note was the fact that the psychological burden was significantly higher in them than in their female counterparts. We, however, did not observe any relationship or correlation between economic status and the psychological burden, contrary to other studies conducted in parents of patients with chronic illness. In Nigeria, where the National Health Insurance Scheme is still experiencing teething problems and only a minority of its citizenry can access it, many caregivers are faced with the grim reality of footing unbudgeted expenses.
Expectedly, this should contribute to some psychological burden on the caregiver because the cost of out-of-pocket treatment in most instances equates to the monthly income of most caregivers in our study. This, however, was not the case.
One plausible reason for this discrepancy is that the majority of the caregivers in our study were mothers with a stable relationship and the financial weight of caring for the hospitalized child would most likely have been borne by both spouses. More so, the traditional role of men as breadwinners means that the bulk of the economic burden would be on the fathers and that the women would only assume a complimentary financial role with whatever monthly remunerations they receive.
Another possible explanation for why our study did not reveal any statistically significant relationship or correlation between economic status and the psychological burden, could be the high social support obtained by the parental caregiver in the care of the sick child. Over 60% of our respondents claimed to have benefited from this level of support. There exists an entrenched commonality in an African society where both the nuclear and the extended family members constitute one large family and each member sees it as their responsibility to financially support others in a dire situation. This no doubt ameliorates, to some degree, the impact of the burden of care on primary caregivers.
In a similar study carried out to determine the level of psychological distress and morbidity among mothers of children undergoing elective surgery at the Lagos State's tertiary hospital, Osuoji et al. reported that 47% of respondents scored higher than the cutoff, with the GHQ scores indicating probable psychological distress. While this particular study focused on the preoperative screening of caregivers, our study targeted caregivers of sick children that have been operated on. Fifty percentage of the respondents in our study had a GHQ score over the cutoff score, whereas 59% had a Zarit score above the normal range, revealing a significant psychological burden. Osuoji's findings serve to highlight the importance of presurgical screening of caregivers, as the prospect of a sick child requiring surgery may be too heavy for some to cope with, resulting in impaired health and an inability to care for the sick.
The findings from our study stress the need for postoperative evaluation, as the child's treatment is a continuum and no clear distinction exists between the preoperative and postoperative phases of a child's care. This is further buttressed by Rokach et al. who positively correlated preoperative stress and anxiety with complications in the postoperative recovery period.
Several studies have identified certain factors as contributing to the psychological burden on caregivers, notably uncertainty of the eventual outcome of the child's condition, unconducive or unfamiliar hospital environment and limited information, unbudgeted expenses and unanticipated financial burden of care, unplanned disruption in the workplace, and unsupportive spouse and relations.,,, We believe that the significant psychological burden witnessed in our study is multifactorial. We equally opined that a periodic psychological evaluation or screening of caregivers would be a laudable task. This would enable hospital teams and health-care planners to modify treatment programs that would be inclusive of the caregivers and targeted at mitigating the stress they may be facing. However, implementing such a policy may not only be challenging in our third-world setting but unrealistic due to the paucity of psychologists and high patient load in many centers. Nevertheless, it is advised that psychological screening of caregivers should be an integral part of the multidisciplinary approach to patient management and when indicated, there should be a prompt referral to a psychologist.
First, our study was limited in its scope, as it only aimed at ascertaining the psychological burden in caregivers and did not investigate the specific factors responsible for the rate witnessed. Second, we also did not know the pattern of psychiatric diagnosis among the subjects as the instruments were used only to serve as screening tools. Identification of these specific factors as well as the psychiatric diagnosis following evaluation for those with high scores would help in formulating a more robust treatment plan and make both treatment and counseling more goal-oriented. These two areas should be points for further studies.
We recommend that a periodical psychological evaluation should be conducted routinely (both pre-and post-operatively) on caregivers. Given the shortage of psychologists or psychiatrists, ward nurses could be trained to carry out this task.
There is also a dire need for the establishment of a robust multidisciplinary team that should include psychologists and social workers.,
| Conclusions|| |
The care of children undergoing surgical procedures is associated with a significant burden among caregivers. There is a need for more work to know the pattern of psychiatric diagnosis which could affect the quality of care.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]