Caregiver Expressed Emotion, Quality of Life and Medication Adherence among People Living with Schizophrenia in Nigeria

Background: People Living with Schizophrenia (PLWS) are expected to live longer than before the advent of psychotropic drugs. Relationship of Caregiver Expressed Emotion and Medication Adherence to Quality of Life in African PLWS is not known. The aim of the study was to determine the relationship between the levels of caregiver expressed emotion, quality of life and medication adherence among people living with schizophrenia.

Method: Data were collected on Socio-demographic and Schizophrenia Clinical Characteristic, Quality of Life, Caregiver Expressed Emotion (EE) and Medication adherence using Socio-demographic and Schizophrenia Clinical Characteristics questionnaire, World Health Organization Quality of Life (WHOQoL) - Brief, Caregiver Level of EE scale and Morisky Medication Adherence Scale (MMAS) respectively.

Results: Caregiver EE was significantly associated with the physical and environmental domains of QoL (p = 0.011 and p = 0.001 respectively). Poor medication adherence correlated positively with the negative attitude and low tolerance sub-scales of the level of EE scale (p = 0.019 and p < 0.001). Medication adherence related significantly to the overall, health-related and physical domains of QoL (p < 0.001, p = 0.017 and p = 0.031). Medication adherence was also a positive predictor of overall QoL (p < 0.001).

Conclusion: The High EE has been found to be closely related to the patients’ QoL. The role of medication adherence in promoting QoL among PLWS has been re-emphasized by the findings.

The adoption of Quality of Life (QoL) approach in the management of people living with schizophrenia represents a major progress, but this new development is not hitch-free. For instance, factors that influence the QoL of People Living with Schizophrenia (PLWS) are still not well-known [1] factors like socio-demographic characteristics and psychiatric morbidity have been studied in larger proportions of the published researches, while family-related factors, like Expressed Emotion (EE), received little or no attention [1] EE is one of the most important caregiver-related factors, which has been found to have an impact on the course and outcome of psychiatric conditions, especially schizophrenia [2]. The construct of caregiver EE is a reliable measure of family environment and (if high) is a predictor of schizophrenia relapse [2]. But EE has been largely neglected in QoL researches among PLWS. This could be due to the unchallenged assumption that the negative effect of caregiver EE is only related to relapse in schizophrenia. But modern psychiatric practice encourages the consideration of QoL even among the stable PLWS. Poor QoL has been found to be a risk factor for schizophrenia relapse [3]. These point to a possible relationship between caregiver EE and QoL among PLWS.

Schizophrenia, as a chronic condition, needs long term pharmacotherapy, whose success depends on adherence to the prescribed drug treatment [4]. In developing countries, most of the PLWS stay with their immediate family members, who are expected to support them in seeking treatment and taking their drugs. [5]. High EE could possibly make the PLWS to develop negative attitudes towards their antipsychotic drugs, as a way of expressing their grievances towards the high EE caregiver or learned hopelessness. Most studies on medication adherence among PLWS did not consider the role of the family environment, though studies on family-related factors, in this regard, are scarce [6].

Medication adherence is expected to improve QoL among PLWS, but some studies have revealed that drug-related factors, like side-effects, can influence the QoL [1]. Therefore the net effect of such drugs needs to be well-studied, especially in countries where older generations of antipsychotics are still being widely used.

There is shortage of researches on QoL among Nigerians living with schizophrenia, and few among those studies considered family-related factors [7]. Poor QoL and high EE have been linked to relapse in schizophrenia [2,3]. But the relationship between EE and QoL in these patients is not well-explored. Factors that influence QoL in schizophrenia are not well known, this calls for more studies on this topic.

Because of the essence of medication adherence in schizophrenia, the benefit of a study on factors that determine the adherence can never be over-emphasized, and more so as studies on family-factors associated with treatment adherence are scarce [6].

The study was conducted among PLWS and their informal caregivers attending the adult outpatient clinics of Aminu Kano Teaching Hospital (AKTH). The 500 bed capacity hospital is located in the northern Nigeria’s largest and commercial city of Kano. The study was conducted in the months of February through August, 2019. Inclusion criteria for the patient respondents included; must met MINI-7 criteria for lifetime schizophrenia diagnosis, in remission and on antipsychotic drug for at least 6 months and aged 18-60 years, while patients with co morbidities such as substance use disorder, intellectual disability and chronic physical illnesses were excluded. Inclusion criteria for the caregiver respondents included; consent by the patient for the caregiver to be interviewed, aged at least 18 years and must be living with the patient for at least 5 days a week in the previous 6 months. Cluster random sampling technique was applied. Ethical clearance was obtained from the Ethical Committee of the AKTH.

The following instruments were used;

Socio-demographic and Schizophrenia clinical variables questionnaire

MINI International Neuropsychiatric Interview (MINI)-7.0 scale: MINI-7 corresponds to DSM-5 diagnosis and it has been used to confirm the lifetime diagnosis of schizophrenia in the patient respondents. The instrument contains “yes” or “no” questions on different forms of delusions, hallucinations and formal thought disorders.

Positive and Negative Syndrome Scale of Schizophrenia (PANSS)

Each of the total 30 items on this scale is scored on a 7 point symptom severity proportional scale. This instrument has been used to establish the remission criteria among the PLWS. The Criteria was satisfied when a patient reported a score of 3 or less on these eight items of the PANSS. The 8 items were delusions, conceptual disorganization, hallucinatory behavior, blunted affect, social withdrawal, lack of flow or spontaneity of conversation, mannerism and posturing and unusual thought content.

Level of Expressed Emotion (LEE) scale

LEE scale is a 60-item self-administered instrument which comes in two versions, the patient and the relative versions. The relative version was used in this study. It has 60 statement to which a patient or relative responds depending on his/her agreement with each statement by selecting “True” or “False”.

The scale has 4 sub-scales and each sub-scale is represented by 15 of the 60 statements. The 4 sub-scales are: Intrusiveness, Emotional response, Attitude and Tolerance sub-scales. The instrument gives sub-scale and overall expressed emotion scores. The level of expressed emotion, high or low, was determined by median split of the overall score. Both the English and Hausa translated versions of the instruments were used.

World Health Organization Quality of Life (WHOQOL-BREF) scale

This 26-item of the self-administered are grouped under the overall quality of life and general health category (2-items), and four domains, namely- physical health (7-items), psychological health (6-items), social relationships (3-item) and the environmental health (8-items) domain. Each item is scored on a scale of 1 to 5, with 1 being the lowest score and vice versa, exceptions are the items (facets) of “pain and discomfort”, “negative feelings” and “medication dependence” in which the scoring is in reverse order.

The scoring of each domain was made by calculating the mean domain score, the mean score was then multiplied by 4, this conversion gives the corresponding score on WHOQOL-100. To calculate the percentage satisfaction with an item or domain of quality of life, this formula was used; score minus 4 multiplied by 100/16.

English and Hausa versions were used.

Morisky 4-item medication adherence scale

This scale was used to assess patients’ level of medication adherence. The 4-items come in the form of “Yes” or “No” questions, a score of 0 denotes high adherence, while scores of 1-2 and 3-4 denote intermediate and low adherence respectively

Procedure

Patients and caregivers were interviewed separately and chaperons were used. About 5 to 8 patient-caregiver pairs were interviewed on each of the 2 clinic days per week. Data was analyzed using Statistical Package Software for Social Sciences (SPSS) version 21. Analysis was done at univariate, bivariate and multivariate levels.

Up to 250 patient-caregiver pairs made valid responses in the study, implying a response rate of 92.6%. Among the patient respondents, the mean age was 34.6 (SD ± 10.8) years, 135 (54%) were males, 99 (39.6%) were married and a significantly larger proportion of the females were married (χ² = 31, df(1), p < 0.001). Up to 215 (86%) attained some level of formal education, while 157 (62.8%) were unemployed (Table 1). Among the caregivers, the mean age was 42(SD ± 14.6) years, 135 (54%) were females, majority 169 (67.6%) were married, 57 (22.8%) had no formal education, while 126 (50.4%) were employed. Over half, 128 (52%), were found to be High Expressed Emotion (HEE) caregivers. No association was found between the EE status and the socio-demographic characteristics of the caregivers

The mean overall and general health aspects of Quality of Life (QoL) among the PLWS were 3.75 (SD ± 0.99) and 3.77 SD ± 1.0) respectively. Male and female PLWS had significantly higher QoL mean scores in the social domain and overall QoL respectively. The details of the QoL scores are outlined in tables 2,3.

Among the respondents, 98 (39.2%), have been found to be highly adherent to their antipsychotic medications, while 138 (55.2%) and 14 (5.6%) were found to belong to the intermediate and low level of adherence groups respectively.

Patients living with low EE caregivers had significantly higher mean scores in the physical and environmental domains of QoL. (p = 0.011 and p = 0.001 respectively) (Table 4). No significant relationship between the EE status of the caregiver and medication adherence among the PLWS. However, Poor medication adherence correlated positively with the negative attitude and low tolerance sub-scales of the level of EE scale (p = 0.019 and p < 0.001).

Antipsychotic treatment adherent PLWS had significantly higher mean scores in the overall and health-related aspects, as well as the physical domain of QoL (p < 0.001, p = 0.017 and p = 0.031 respectively) (Table 5).

Medication adherence has been found to be a positive predictor of the overall and health-related QoL, while low EE care giving was found to be a positive predictor of better physical and environmental domains of QoL (Table 6).

A little above half (135, 54%) of the PLWS were males, which corresponded with findings of a previous Nigerian study. Schizophrenia is known to be slightly more prevalent among males. The average age of the patient respondents was 34.6 years, implying a young and potentially productive group. Despite the relatively high level of educational attainment among the PLWS, majority of them were unemployed. This could be related to the low employment rate nationwide, as well as the public stigma towards PLWS. Over a half of the caregivers were females, consistent with findings of previous local studies. In African culture, females are usually expected to take care of the home, including caring for the sick family members [8,9].

In this study, over a half (52%) of the caregivers were displaying HEE towards their respective patient relatives. This is a high prevalence of HEE when compared with findings previous Nigerian studies [10-12]. For instance, Nigerian researchers, who used similar instrument as in this study, found a prevalence of 41%, 46% and 50% [11,12]. The fact that the aforementioned studies were conducted in a separate geopolitical region and different cultural settings could explain the reason for the slightly higher prevalence of caregiver EE in this study. Another reason could be that the Nigerian studies with lower prevalence were conducted in an a region with much more available mental health services and as such the relatives of the PLWS could have easy access to counseling and psycho-educational interventions, which might have resulted in relatively more appropriate caregiver attitudes and behaviours toward the patients. Another factor that could explain the difference in prevalence was the level of stigma towards people with mental illness among the differing cultures and societies. But Nigerian studies which used other methods of assessing high expressed emotion usually got higher prevalence compared to what was found in this study. Two studies, which involved the use of Camberwell Family Interview, found the prevalence of caregiver expressed emotion to be 63% and 80.65% among the patients’ relatives in Lagos and Delta states respectively [8,10]. The fact that both states differ from each other and from the state where this study was conducted, in terms of their cultures and socio-economic statuses, could explain why the prevalence differed. The prevalence of HEE also, varies, some were higher or lower than what was found in this study and this could be dependent on the socio-cultural context and the instrument used, ranging from 12% in Bali, Indonesia, to 70% in England [13,14].

The mean overall QoL scores among the PLWS was almost similar to what reported by Abioda and colleagues in a similar patient population [15]. This could be explained by the fact that both studies were conducted in northern Nigeria among patients from similar backgrounds. Elsewhere in Nigeria, both lower and higher mean overall QoL scores were reported among the PLWS [16,17]. Higher overall QoL score among the females, in this study, could be due to the fact that schizophrenia usually runs a less aggressive course among females. While higher social domain of QoL scores among the males might be a reflection of the gender inequality in an African society.

Less than two-fifths of the PLWS were adherent to their antipsychotic drugs, which is in keeping with generally low level of treatment adherence among people living with chronic illnesses. A lower and higher proportion of medication adherence were reported among PLWS in Maiduguri and Uyo in Nigeria [9,18].

The finding that PLWS who stay with a low EE caregiver had significantly better QoL in the physical and environmental domains could be explained in different ways. Living with a high EE caregiver could be associated with physical and emotional abuse, both of which might lead to poor physical health and well-being among such patients, hence the low score on the physical domain of QoL. High expressed emotion care giving could also make the patient unable to appreciate their environment and opportunities in it, such caregivers could also deny the patient access to available resources in the environment. These were indicators of poor QoL in the environmental domain.

The fact that in this study negative attitude of the caregiver negatively correlated with the patients’ medication adherence is not unexpected. Negative attitudes, such as mistrust and suspecting the patient of faking his symptoms, could make the patients to lose hope and even interest in taking their drugs. Another possibility is that poor treatment compliance, among the PLWS, could have resulted in negative attitudes among the caregivers. Meanwhile, low caregiver tolerance could make the patient to avoid communicating with the caregiver. Sometimes the patient may be too scared to remind the caregiver about the date of next clinic or that his/her drug is finished. Also poor treatment compliance by the patient respondents could lead to the low tolerance attitude by the caregivers. In the United Kingdom, Sellwood and colleagues had reported that caregiver EE related significantly and negatively with medication compliance and was even more important than the relatives’ knowledge of schizophrenia [19].

In this study, patients who were adherent to their prescribed antipsychotic drugs were found to have better overall QoL. This is in keeping with the findings of some existing studies in Nigeria [17]. The higher quality of life among the medication adherent patients suggests that regular intake of drugs by the patients is not only associated with symptom resolution, but also improved overall subjective QoL. The positive relationship between medication adherence and QoL was found in other parts of the world. Researchers in the United Kingdom found that medication adherence was positively related with QoL among a group of the PLWS after they were followed for a year [20].

Adherence to antipsychotic medication among the PLWS, in this study, has been found to be associated with better health-related QoL. This implies that medication adherence could lead to improved subjective sense of wellness among the PLWS. Similarly, patients with better health-related QoL were more likely to be treatment adherent. A positive association was also found between the medication adherence and better QoL in the physical domain. Oluseun and colleagues reported that, in a population of Nigerian PLWS, there were positive correlations between medication adherence and all the domains of QoL [17].

High caregiver EE, which was highly prevalent in this study, has been found to be associated with lower QoL and, to some extent, poor antipsychotic medication adherence among the PLWS. Medication adherence was found to be associated with higher overall, health-related and physical domain of QoL. Therefore, it is imperative to educate the caregivers of PLWS on EE in order to improve their treatment compliance and QoL.

1. Galuppi A, Turola MC, Nanni MG, Mazzoni P, Grassi L. Schizophrenia and quality of life: how important are symptoms and functioning? Int J Ment Health Syst. 2010 Dec 8;4:31. doi: 10.1186/1752-4458-4-31. PMID: 21143871; PMCID: PMC3016370.
2. Hooley JM, Gotlib IH. A diathesis-stress conceptualization of expressed emotion and clinical outcome. Appl Prev Psychol. 2000;9:135-51. doi: 10.1016/S0962-1849(05)80001-0.
3. Boyer L, Millier A, Perthame E, Aballea S, Auquier P, Toumi M. Quality of life is predictive of relapse in schizophrenia. BMC Psychiatry. 2013 Jan 9;13:15. doi: 10.1186/1471-244X-13-15. PMID: 23302219; PMCID: PMC3544732.
4. Mahaye S, Mayima T, Nkosi S, Mahomed FN, Ntuli L, Pramal J, Setibana O, Oosthuizan F. Medication adherence of psychiatric patients in an outpatient setting. Afr J Pharm. 2012;6(9):608-12. doi: 10.5897/AJPP11.646.
5. Barbato A. World health organization division of mental health and prevention of substance abuse. Schizophrenia and Public Health. 1998;1-32. https://tinyurl.com/4z8c27ay
6. Mohd S, Christoday RJK, Srearlj S, Uvais NA. Medication adherence in schizophrenia: A hospital-based cross-sectional study of family-related factor. Psychiatr Rehabil J. 2017;4(2):215-219. doi: 10.1007/s40737-017-0093-x.
7. Aloba O, Fatoye O, Mapayi B, Akinsulore S. A review of Quality of Life studies in Nigerian patients with psychiatric disorders. Afr J Psychiatry (Johannesbg). 2013 Sep;16(5):333-7. doi: 10.4314/ajpsy.v16i5.44. PMID: 24051665.
8. Christian E. Case studies of family expressed emotion for families of patients living with schizophrenia in delta state of Nigeria. Eur J of Mental Health. 2009;4(2):247-256. doi: 10.1556/EJMH.4.2009.2.5.
9. Ibrahim AW, Pindar SK, Yerima MM, Rabbebe IB, Shehu S, Garkuwa HA, Bashir, IY, Wakil MA, Yahya SJ. Medication related factors of non-adherence among patients with schizophrenia and bipolar disorder. Outcome of a cross-sectional survey in maiduguri, North eastern Nigeria. J Neurosci Behav Health. 2015;7(5):31-39. doi: 10.5897/JNBH2015.0128.
10. Ayilara O, Ogunwale A, Babalola E. Perceived expressed emotions in relatives of patients with severe mental illness: A comparative study. Psychiatry Res. 2017 Nov;257:137-143. doi: 10.1016/j.psychres.2017.07.037. Epub 2017 Jul 20. PMID: 28755604.
11. Reicher B, Adeyemi JD, Lawal RA, Famuyiwa OO, Haruna AY, Jibodu MO. Emotional reactions of relatives to schizophrenic patients in Lagos, Nigeria. Afr J Med Med Sci. 2003 Mar;32(1):7-11. PMID: 15030058.
12. Ogbolu RE, Adeyemi JD, Erinfolami AR. Expressed emotion among schizophrenic patients in Lagos, Nigeria: a pilot study. Afr J Psychiatry (Johannesbg). 2013 Sep;16(5):329, 331. doi: 10.4314/ajpsy.v16i5.43. PMID: 24051664.
13. Hashemi AH, Cochrane R. Expressed emotion and schizophrenia: a review across cultures. Int Rev Psychiatry. 1999;11:219-224. doi: 10.1080/09540269974401.
14. Kurihara T, Kato M, Tsukahara T, Takano Y, Reverger R. The low prevalence of high levels of expressed emotion in Bali. Psychiatry Res. 2000 Jul 17;94(3):229-38. doi: 10.1016/s0165-1781(00)00143-8. PMID: 10889287.
15. Abioda DI, Morakinyo O, Ibrahim A. Quality of life in persons with schizophrenia in North-Western Nigeria. The IJPSY. 2013;2(1). https://tinyurl.com/35fprnze
16. Adewuya AO, Makanjuola RO. Subjective life satisfaction and objective life conditions of people with schizophrenia in South Western Nigeria. Psychiatr Times. 2016;61(3):314-316. doi: 10.1176/appi.ps.61.3.314.
17. Ogunnubi OP, Olagunju AT, Aina OF, Okubadejo NU. Medication Adherence Among Nigerians with Schizophrenia: Correlation Between Clinico-Demographic Factors and Quality of Life. Ment Illn. 2017 Mar 22;9(1):6889. doi: 10.4081/mi.2017.6889. PMID: 28479972; PMCID: PMC5379219.
18. Effiong JH, Umoh KA. Medication non-adherence in schizophrenia: Prevalence, correlates among out patients in a tertiary health facility in Uyo, South-South Nigeria. J Clin Med. 2015;5(6):107-113. doi: 10.5923/j.cmd.20150506.01.
19. Sellwood W, Tarrier N, Quinn J, Barrowclough C. The family and compliance in schizophrenia: the influence of clinical variables, relatives' knowledge and expressed emotion. Psychol Med. 2003 Jan;33(1):91-6. doi: 10.1017/s0033291702006888. PMID: 12537040.
20. Hayhurst KP, Drake RJ, Massie JA, Dunn G, Barnes TR, Jones PB, Lewis SW. Improved quality of life over one year is associated with improved adherence in patients with schizophrenia. Eur Psychiatry. 2014 Mar;29(3):191-6. doi: 10.1016/j.eurpsy.2013.03.002. Epub 2013 Jun 12. PMID: 23769325.