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 Table of Contents  
ORIGINAL RESEARCH REPORT
Year : 2020  |  Volume : 17  |  Issue : 4  |  Page : 113-119

Knowledge of SCD and psychosocial burden experienced by caregivers of children with SCD at a secondary level hospital in Lagos, Nigeria - A cross sectional study


1 Directorate of Medical Services, Lagos State Health Service Commission, Lagos, Nigeria
2 Department of Community Health and Primary Care, College of Medicine, University of Lagos, Lagos, Nigeria
3 Department of Pediatrics, College of Medicine, University of Lagos, Lagos, Nigeria

Date of Submission16-Jun-2019
Date of Acceptance21-Jun-2020
Date of Web Publication19-Oct-2020

Correspondence Address:
Dr. Adeseye Michael Akinsete
Department of Pediatrics, Lagos University Teaching Hospital, College of Medicine University of Lagos, Lagos
Nigeria
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/jcls.jcls_49_19

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  Abstract 


Background: Sickle cell anemia (SCA) is the most prevalent genetic disease in the world and the most severe of the sickle cell disorders. Individuals with SCA undergo numerous psychosocial problems. The severity of the clinical status of SCA imposes differing degrees of suffering to patients and their relatives, and the overall health of these patients depends on the quality of life and psychological preparedness of the caregivers. This study assessed the knowledge of sickle cell disease (SCD) and the psychosocial burdens of the disease on caregivers. Methods: This was a cross-sectional study conducted at Massey Street Children Hospital. Following consent, an interviewer-administered structured pro forma was utilized for the survey. The study was approved by the Health, Research, and Ethics Committee with permission from the Lagos State Health Service Commission. Data were analyzed using Epi Info™ 7.140. Results: Two hundred and sixteen respondents were interviewed with a mean age of 37.7 ± 7.8 years. Most of the respondents were female (90.7%) and presently married (90.7%). The mean knowledge score was 7.5 ± 2.1, with most (74.1%) of the respondents having good knowledge. The vast majority of respondents had lost income or financial benefits due to time spent caring for the child (91.2%) and reported that a child's illness disturbs activities at home (77.3%). Almost all (96.8%) reported an atmosphere of tension in the homes due to a child's illness, 80.6% reported episodes of depression and feeling sorrowful, 34% felt angry with self or child, and 14.3% felt stigmatized because of child's illness. There was a statistically significant association between respondents' level of education, gender, age, relationship to a child, and knowledge of SCD, and a higher proportion of those with good knowledge had no disruption of family interactions. Conclusion: Majority of the caregivers accessing care for children with SCD had good knowledge of the disease and experienced varied degrees of disruption in their finances, family routine, and family interaction. Improving knowledge of SCD is recommended among caregivers to alleviate psychosocial burdens, especially those associated with family interactions.

Keywords: Knowledge, psychosocial burden, sickle cell disease


How to cite this article:
Fetuga AA, Balogun MR, Akinsete AM. Knowledge of SCD and psychosocial burden experienced by caregivers of children with SCD at a secondary level hospital in Lagos, Nigeria - A cross sectional study. J Clin Sci 2020;17:113-9

How to cite this URL:
Fetuga AA, Balogun MR, Akinsete AM. Knowledge of SCD and psychosocial burden experienced by caregivers of children with SCD at a secondary level hospital in Lagos, Nigeria - A cross sectional study. J Clin Sci [serial online] 2020 [cited 2020 Nov 29];17:113-9. Available from: https://www.jcsjournal.org/text.asp?2020/17/4/113/298454




  Introduction Top


Sickle cell anemia (SCA) is the most prevalent genetic disease in the world and the most severe of the sickle cell disorders.[1],[2] It is most prevalent in malaria-endemic regions with the highest burden of the disease in sub-Saharan Africa.[1] Nigeria records 100,000 births annually and mathematical models have predicted that the prevalence will increase by a third by the year 2050 with newborn births predicted at 404,200 yearly.[1],[2]

Sickle cell disease (SCD) is a major contributor to childhood morbidity and mortality with SCA contributing the equivalent of 5% of under-5 deaths on the African continent, more than 9% of such deaths in West Africa, and up to 16% of under-5 deaths in individual West African countries.[3] Despite the fact that the United Nations has called for global efforts to increase awareness of SCD, relatively little attention has been given to assessing the burden of SCD and how to reduce it in Africa where about 85% of children with SCD are born.[4]

Individuals with SCD undergo numerous psychosocial problems which result from the frequent pain episodes, missed school and work days, and recurrent hospitalizations. In Africa, cultural factors, traditional belief systems, and practices influence health-seeking practices and outcomes. In Nigeria, among the inhabitants of the southeastern region, the repeated cycle of birth and death is thought to be due to reincarnation called “Ogbanje.”[5] The absence of sound knowledge about the cause, course, and prevention of the disease will predispose to the predominance of mystical and preternatural nature of the disease, and the presence of good knowledge will dispel these beliefs and improve the course of the disease, its treatment, and outcome.[6]

Studies have shown that parents of children with SCD have increased anxiety, depression, guilt, excessive feelings of responsibility, and overprotection, while the patients experience depression, anxiety, anger, and aggression.[7] Improved attitude among the parents and caregivers has been attributed to increased knowledge about the disease which is closely linked to better coping mechanisms.[6]

As the severity of the clinical status of SCA imposes differing degrees of suffering to patients and their relatives and the overall health of these patients depends on the quality of life and psychological preparedness of the caregivers, it is important to evaluate the burden of disease on caregivers because they also have needs and difficulties.[8],[9] This study assessed the knowledge of SCD and the psychosocial burdens of the disease on caregivers.


  Methods Top


Study area and design

This descriptive cross-sectional study was conducted at Massey Street Children Hospital. The hospital has a sickle cell/hematology clinic, which holds twice weekly with an average clinic attendance of 50 patients. About 400 patients are seen in the clinic monthly, with a total of 1200 patients with regular attendance at the time of the study.

Study population

The study population comprised all caregivers of patients who came for a clinic appointment during the period of data collection. The inclusion criteria were as follows:

  • Caregiver whose child must be in steady state[8]
  • Caregiver whose child must have previously been admitted at least two times for sickle cell crisis[10]
  • Caregiver who must be the primary caregiver[10]
  • Caregiver who must have lived with the child for at least 1 year.


Sample estimation

The sample size was calculated using the Cochran formula: n = z2pq/d2, followed by the formula: Nf = n/1+ (n)/(N) for a population <10000, where n is the desired sample size required, z is the standard normal deviate at 95% confidence interval, P is the proportion of caregivers in a similar study with some psychosocial burden from SCD (78%),[2]d is the acceptable error margin, nf is desired sample size when the population is less than 10,000, and N is the estimate of the population size (1200). This resulted in a sample size of 216.

Sampling methodology

All consecutive caregivers of children who presented for a regular clinic appointment and satisfied the inclusion criteria were included till the sample size was reached.

Data collection

Data were collected using a structured, interviewer-administered questionnaire. The questionnaire collected information on demographic data, socioeconomic data, clinical burden, knowledge of SCD, and the Sickle Cell Disease Burden Interview to assess psychosocial stress.[8],[10],[11],[12] The questionnaire was pretested at the pediatric sickle cell clinic of Lagos University Teaching Hospital (LUTH) and amendments were made as appropriate. Four interviewers were trained to assist in administering the questionnaires. Data were collected over a period of 6 weeks.

Ethical consideration

The study proposal was approved by the Health Research and Ethics Committee of LUTH. Permission to carry out the study was obtained from the Lagos State Health Service Commission. Caregivers received information on the purpose and objectives of the study and written informed consent was obtained from each participant. Participation in this study was voluntary. Confidentiality was ensured throughout the study.

Data analysis

Data collected were analyzed using Epi Info™ 7.140 statistical software (CDC, Atlanta, GA, USA). Descriptive statistics of variables were presented as frequencies, percentages, and mean ± standard deviation (SD). Associations between categorical sociodemographic variables and respondents' knowledge and psychosocial burden scores were determined using Pearson's Chi-square or Fisher's exact test as needed. The level of significance was set at 0.05.

Questions on knowledge and the psychosocial domains were scored. Incorrect and don't know responses to the knowledge questions were scored 0, while correct responses were scored 1. The mean knowledge score was used as a cutoff for good and poor knowledge.[13]

Four psychosocial domains were assessed in this study: the impact on family's finances, disruption of family activity, disruption of family interactions, and caregivers' coping ability. Responses to this ranged from never occurred to always and regularly occur with scores of 0–3. Total scores of “0,” “1–3,” “4–6,” and “7–9” were used for no financial impact, insignificant impact, moderate impact, and severe impact, respectively; total scores of “0,” “1–5,” “6–10,” and “11–15” were used for no disruption, insignificant disruption, moderate disruption, and severe disruption of family activity, respectively; and total scores of “0,” “1–3,” “4–6,” and “7–9” were used for no disruption, insignificant disruption, moderate disruption, and severe disruption in family interactions, respectively.[8]


  Results Top


The respondents ranged in age from 20 to 65 years, with a mean age of 37.7 years ± 7.8 SD. All the respondents were family caregivers, mostly the mother (87.5%). Most of them were female (90.7%), presently married (90.7%), had at least secondary education (75%), and were employed (96.8%). About two-third (67.5%) of the employed respondents had semi-skilled occupations [Table 1].
Table 1: Sociodemographic characteristics of caregivers

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Only 85 respondents (39.4%) had heard of SCD before the child was diagnosed. Respondents were allowed to state more than one source of information. All (100%) got information from health-care workers. Only a few had other sources of information: television (4.6%), Internet (3.7%), family/friends (2.3%), and school (0.9%).

Only 23.6% were aware that SCD is genetic. However, majority (86.6%) knew that SCD is inherited from both parents. Most of the respondents (73.6%) understood that there was no chance having SCD if only one parent had the trait. Only 2.8%, however, understood the inheritance pattern of SCD. Two-third (63.4%) of the respondents knew that SCD is not an infection. A large proportion (81.5%) also knew that SCD is not contagious. Almost all (97.2%) the respondents knew that the diagnosis of SCD is by a blood test. Only about half (49.1%) knew that SCD can be prevented. All (100%) of the respondents knew that bone pain is a symptom of sickle cell crisis.

The mean knowledge score was 7.5 ± 2.1 SD and most (74.1%) of the respondents had good knowledge of SCD [Table 2].
Table 2: Correct knowledge of sickle cell disease

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Regarding the burden experienced by caregivers, the vast majority of respondents (91.2%) had lost income or financial benefits due to time spent caring for the child. Only 25.5% had taken a loan to meet the expenditure of child's illness. Majority (96.8%) of the children had missed school on account of illness and illness had made 70% of the caregivers neglect other family members. A child's illness caused a general atmosphere of tension in the homes of 96.8% of the respondents and about two-third (64.8%) reported threats of separation or divorce. Fifty caregivers (25.1%) had difficulty coping with the child with SCD. Only 31 (14.4%) caregivers had difficulty accepting responsibility to care for the child. About 80%, however, reported episodes of depression and feeling sorrowful. Nearly 34% feel angry with self or child. Thirty-one caregivers felt stigmatized because of a child's illness [Table 3].
Table 3: Burden of sickle cell disease experienced by caregivers

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Caring for child with SCD had an insignificant impact on the finances of majority (86.6%) of caregivers. Caring for child with SCD disrupted activities in majority (82.9%) of families. Most (63.9%) caregivers had no disruption in family interactions [Table 4].
Table 4: Burden score of caregivers

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On bivariate analyses, there was a statistically significant association between respondents' level of education, gender, age, relationship to child, and knowledge of SCD. A higher proportion of caregivers with postsecondary education (86.3%) had good knowledge than those with lower education; a higher proportion of female caregivers (76%) had good knowledge compared to the male; more of the caregivers who were mothers (77.3%) had good knowledge (χ2 = 15.37, P = 0.002); and a higher proportion of the younger caregivers had good knowledge compared to the older ones (χ2 = 10.03, P = 0.020) [Table 5].
Table 5: Factors associated with knowledge and psychosocial burden

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Knowledge was significantly associated with disruption of activities within the home. A higher proportion of those with good knowledge (83.4%) had no disruption of family interactions [Table 5]. There were no statistically significant associations between relevant variables and the other domains of psychosocial burden.


  Discussion Top


The primary caregiver of the child bears the bulk of the psychosocial burden of care. This study showed that mothers were predominantly the primary caregivers of the children in this study. This finding has been corroborated by other studies in other parts of the world.[8],[10],[11],[14] Mothers are, by nature, more inclined to seeing to the needs of their children and hence will bear more burden for their care. Less than a tenth of the primary caregivers in this study were fathers, while grandparents were approximately 4%. This distribution of primary caregivers was reported from another cohort in the country.[8] It will be safe to then assume that the maternal description of psychosocial burden should be more reliable than other sources.

Majority of the caregivers had good knowledge of SCD. Knowledge was better in the mothers and least with grandparents. However, most of them learned of SCD when the diagnosis was made in their wards. This is not good for an SCD endemic area and is particularly worrisome when one considers that approximately 70% of the study population completed 12 years of formal education. This may further fuel the continued persistence of the problem in the population. This is similar to the findings from a Jamaican study where most mothers became aware of SCD after the diagnosis of their wards.[10] This was further corroborated by Marsh et al. in Kenya, Eastern Africa.[15] The implication is the failure of primary prevention due to a lack of information to the general public or the strong attachment to cultural belief systems.

A study carried out in Uganda reported poor knowledge among immediate family members of children with SCD and this was attributed to the fact that majority of the respondents (82%) had not received additional informational materials regarding SCD such as books, pamphlets, or videos on SCD.[12] In this present study, majority of the respondents also did not receive information about SCD in other forms apart from health workers when they go for routine clinic visits or hospital admissions. Unfortunately, the use of pamphlets, books, or audio–visual aids is not common in the resource constrained parts of the world where the burden is largest. Parents reported that information from health-care workers is usually inadequate during clinic or hospital interactions, and there is a need for additional materials for caregivers to study.[10]

A study among African-Americans in Northern Manhattan revealed that the respondents knew that sickle cell was an inherited disorder but did not know the inheritance pattern of the disorder.[16] This same scenario was replicated in this study where majority of the respondents were aware of the fact that SCD was inherited, but < 4% knew the actual inheritance pattern. More worrisome was the fact that only half of the study population knew that SCD could be prevented, and a significant proportion believed that the cure was spiritual. Reassuringly, all the participants knew that pain was a symptom of SCD and the most common presentations were abdominal pain and yellowness of the eyes. It is known that pain is the most common cause of emergency room visits in those with SCD.[17],[18],[19]

Stigmatization has been found to be common among those with SCD in Africa.[8],[11],[12],[15] This is due to the perceived cultural and spiritual views of the population about the disorder. This then potentiates a conspiracy of silence among the caregivers and impacts upon the care of the children. On the contrary, only a quarter of this study population complained of stigmatization. This is at variance with the higher figures reported from other parts of Nigeria and Africa at large.[8],[11],[12],[15] This may be because most caregivers in this study did not reveal the status of their wards or the perceived cosmopolitan nature of Lagos. However, some of the children were treated as fragile, excused from regular children's play, and sometimes, outrightly forbidden from participating in school or peer group activities.

The financial burden has been reported among those with SCD.[10],[12] This is due to loss of income resulting from lost man-hours, increase in the cost of care due to repeated hospitalizations, and purchase of medications. Coupled with the prevailing poverty is the fact that most of the caregivers have to pay for care out of pocket, this places a huge strain on scarce family resources and a huge source of distress. Over 90% of the study participants complained of a huge financial burden, but only a small fraction had accessed loans for care.

Frequent school absenteeism and neglect of other family members are common occurrences among individuals with SCD.[8],[12] Almost all the respondents in this study reported the loss of school days for their wards. Half of the respondents in another study in North Central Nigeria reported that their husbands felt neglected, and it was a source of strain in the home.[14] In this study, majority of the respondents reported that other family members complained of neglect. Furthermore, the caregivers complained of a reduction of time for themselves.

It has been documented in a previous study that the child's illness had an impact on the interaction within the family, altered the parent–child interaction, increased the amount of emotional strain upon the primary caregiver, and threatened the social stability of the family.[12] However, in this study, though family disruptions were uncommon, the threat of divorce and separation was not uncommon. This may be connected with the higher number of caregivers with more formal education in this cohort which has been found to correlate with a lower burden score and better family interactions.[14],[20] A report from a University Teaching Hospital in Lusaka, Zambia, revealed that there was a severe strain on marital relationships of parents with children having SCA, with divorce occurring in a fraction of the respondents. Despite the similarities in the cosmopolitan nature of both studies, there was no record of divorce in this study despite a significant number of the respondents complaining about threats of divorce.[12] The difference in divorce rates may be connected to the increased religious nature and the societal abhorrence of divorce among Nigerians.

Finally, factors such as age, relationship to a child, family disruption, and educational level were determinants of psychosocial burden in this study. Some of these factors have been known to influence psychosocial burden.[8],[10],[14],[21]


  Conclusion Top


Majority of the caregivers accessing care for children with SCD had good knowledge of the disease and experienced varied degrees of disruption in their finances, family routine, and family interaction. Improving knowledge of SCD is recommended among caregivers to alleviate psychosocial burden, especially those associated with family interactions.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
  References Top

1.
Centre for Disease Control and Prevention. Global Health- Nigeria. Available from: http://www.cdc.gov/globalhealth/countries/nigeria/what/scd.htm. [Last accessed on 2014 Jul 10].  Back to cited text no. 1
    
2.
Piel BF, Hay IS, Gupta S, Weatherall JD, Williams NT. Global burden of sickle cell anaemia in children under-five, 2010-2050: Modelling based on demographics, excess mortality and interventions. PLoS One 2013;10:E1001484.  Back to cited text no. 2
    
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Ohene-Frempong K. Global Burden of Sickle Cell Disease. Available from: http://SCDAA-Convention-Sep-2013_copy.pdf; http://www.sicklecelldisease.org/sicklecelldisease/uploads. [Last accessed 2014 Sep 03].  Back to cited text no. 3
    
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Anie AK, Egunjobi FE, Akinyanju OO. Psychosocial impact of sickle cell disorder: Perspectives from a Nigerian setting. Globalization Health 2010;6:8603-6.  Back to cited text no. 5
    
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Asnani MR. Sickle cell disease. In: Stone JH, Blouin M, editors. International Encyclopedia of Rehabilitation; 2010. Available from: http://cirrie.buffalo.edu/encyclopedia/en/article/252/. [Last accessed on 2014 Sep 03].  Back to cited text no. 7
    
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da Silva LB, Ivo ML, de Souza AS, Pontes ER, Pinto AM, de Araujo OM. The burden and quality of life of caregivers of sickle cell anemia patients taking hydroxyurea versus those not taking hydroxyurea. Rev Bras Hematol Hemoter 2012;34:270-4.  Back to cited text no. 9
    
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Biljana M, Serrete K, Tin Min S. Sickle cell disease- Experiences of caregivers in managing the disease in children living in western region of Jamaica. Jyvaskyla Univ Appl Soc Sci 2007;Pub thesis, Pg 28/29.  Back to cited text no. 10
    
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Wasomwe M, Ngoma C. A study to assess problems encountered by immediate family members in caring for children affected with sickle cell disease at university Teaching Hospital, Lusaka. Zambia. Med J Zambia 2011;38:1.  Back to cited text no. 12
    
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15.
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21.
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    Tables

  [Table 1], [Table 2], [Table 3], [Table 4], [Table 5]



 

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