Background
Functioning in people with severe mental disorders (SMD) is understood differently by different people, even among clinicians and mental health professionals, because the construct involves different domains and encompasses a wide range of behaviors [
1]. Variation exists in the expected socio-cultural roles and their associated functional tasks by gender, in rural vs. urban settings and across cultures. In rural African communities, women are expected to accomplish all domestic tasks and men only are expected to accomplish some community participation tasks, such as involving in conflict resolution. In terms of setting, farming related tasks are common in rural areas whereas trading and public services are rampant in urban areas. Community activities are also expected to be different in different cultural contexts. Generally, functioning has been understood as the capacity of a person to function in different societal roles such as home-maker (or ‘housewife’), worker, student, spouse, family member or friend [
2]. Functioning has also been conceptualized as the capacity to work, study, live independently and engage in recreation and romantic life [
3‐
5]. The concept of functioning has also been said to incorporate an individuals’ satisfaction with their ability to meet expected societal roles. However, such conceptualizations of functioning may not be applicable in some socio-cultural contexts. In our previous qualitative study from rural Ethiopia [
6], tasks related to self-care, family life, work, interpersonal relationships and participation in community activities were highly valued by family members, neighbors and the community, and considered to be crucial for one’s own survival and the survival of family members. Further, variations are observed among individualistic vs. collectivist societies, whether or not extended family is commonly in the home and among matriarchal vs. patriarchal cultures.
A number of different instruments have been developed to assess functioning, but most originate from Western societies, which are high income, more individualistic and capitalistic [
2,
7]. Such scales may lack ecological validity in other socio-cultural settings [
2,
8]. Many of the included items are culture- bound and difficult to adapt to other situations, especially in a rural African setting [
9]. Furthermore, these scales do not take into account the differentiation of roles by gender which may be more marked in non-Western settings [
10] and they fail to present specific tasks important to the local people [
11].
The apparently better functional outcomes of people with SMD observed in low-and middle-income countries (LMICs) when compared to high-income countries may be a consequence of measurement bias through use of Western measures [
12‐
14]. There is also an argument that functional recovery is a complex and multi-dimensional concept and meaningful comparison across cultures will not be possible using measures developed in the Western setting [
15]. In response, there has been a call for development and validation of contextualised measures of functioning in LMICs, which may also be generalizable to similar settings [
13,
15].
The aim of the current study was, therefore, to develop and validate a measure of functional impairment for people with SMD, which is appropriate for a rural African low-income country setting. In doing so, we sought to develop a scale that was socio-culturally relevant, focused on the ability to complete tasks important to the wellbeing of the person and those around him/her and that addressed differences in the roles of men and women.
Discussion
We have developed a measure of functional impairment for people with SMD, which is contextually appropriate for a rural African setting and has acceptable psychometric properties. Our study also shows that adding women only items in the scale do not bring about improvements in the psychometric properties of the scale, but factor analysis indicated that these items loaded separately to the other work items and our qualitative studies indicate that domestic tasks may be useful to assess improvement of the life of women with SMD in the clinical setting. Our qualitative study [
6] and the free listing and pile sorting exercise enabled us to identify the broad domains of functioning and the specific daily activities that an adult person is expected to accomplish in a rural low-income country setting. Participants emphasized that these activities are crucial for the survival of both the person and the people around him/her. It appears that men and women are expected to accomplish a number of similar tasks, except domestic tasks, which are left only to women. Women are required to accomplish almost all tasks that men are to accomplish, but men are not required at all to engage in domestic tasks.
The domains of functioning we identified are similar to the domains found in various cross-cultural measures of functioning [
39,
40], including the WHODAS [
29], although some domains of functioning such as mobility and understanding were not prioritized in our study. However, the specific activities in each domain are less generalizable, and are relevant to the context where the study was conducted. They are directly or indirectly crucial for the survival of both the person and his/her family members. Our finding of daily functional activities that are relevant to the local situation in rural Ethiopia (and similar agricultural communities across Africa) and show differentiation by gender is consistent with the ideas of Bolton and Tang [
11], who said that functional tasks vary greatly according to sex, culture and environment. Nevertheless, in our study, the gender specific items did not improve the psychometric qualities of the scale we developed.
In the pilot study, the endorsement of items from both service users and caregivers were well-distributed. There were no items endorsed by everyone or not endorsed by any participants. Overall, responses were skewed to the right, which is expected as we recruited people with SMD who were stabilized taking medication for some time. Few items were found to have mean values higher or lower than all the other items in the sub-scale they belong to. This is logical when we see these items taking the context into account. For example, farming related activities such as ploughing and harvesting are known to be the most difficult tasks in rural areas. Using the toilet properly is found to be the easiest of all items, which sounds correct in people with SMD who are stabilized, though this task may be more difficult in people who are actively psychotic.
All items performed well in terms of item-total correlation. Only two items had item-total correlation <0.60 and the lowest item-total correlation is 0.47. However, there are quite a number of items with item-item correlation >0.90, though there are no items with item-item correlation <0.30. Those items with item-item correlation >0.90 were considered for merging, deletion, or modification. The majority of items performed well with regard to test-retest reliability but four items were found to have test-retest reliability <0.30 among both service users and caregivers and these items were considered for revision or deletion. Overall, items were found to have better test-retest reliability for service users compared to caregivers.
We carried out exploratory factor analysis using pilot study data for each of the sub-scales separately, to identify the items which load onto the dimensions identified. In the self-care sub-scale, two items loaded onto the eating factor and ten of the items loaded onto the hygiene factor. We found that the items related to eating (able to eat food in a proper manner and able to eat food on time) were understood as appetite and availability, which do not indicate an individual’s ability to care for him/herself. Hence, these two items were merged and rewritten as “able to ask for or prepare and eat food when needed.” Nevertheless, it is logical and acceptable for items related to eating and related to hygiene loaded separately. In the work sub-scale, we found one factor solution for the men and women shared items, but in the women only items we found two factor solution (farming and domestic tasks). It is striking that the different farming and domestic tasks loaded differently. In rural Ethiopia, all the domestic tasks are expected to be accomplished by women. In addition, women are expected to support their husbands or their parents in all aspects of farming.
Factor analysis of the social functioning items, both the shared items and the woman only items, resulted in two factors (family and children and community participation), although there were items which cross-loaded. This clearly reflects the reality in rural Ethiopia, where adult people are not only expected to take care of their family members (parents, children and siblings), but are also expected to participate in different kinds of community activities such as “Idir” [local self-help group), weddings, funerals, meetings and in other social gathering and developmental activities.
Overall, the factors we identified through exploratory factor analysis are consistent with the findings of our qualitative study [
6] and the free listing and pile sorting exercise. In addition, they are more or less similar with the domains in the WHODAS [
29,
41,
42], though the specific activities under each domain are different.
Our validation study showed that the new functioning measure that we have developed has excellent internal consistency. It has positive and strong correlation with WHODAS-2.0 indicating that the two instruments measure the same construct. The new measure has also been demonstrated to have a positive correlation with symptom severity, both at baseline and follow-up. Previous studies showed that there is a positive correlation between symptom severity and functional impairment [
9,
43‐
45]. Nevertheless, in our study, the correlation between symptom severity and functional impairment was found to be higher at follow-up than at baseline. This may be due to low variability of scores at baseline. We included new presentations and people in a state of relapse and both symptom and functioning scores were found to be high. Low or moderate correlation between symptom severity and functional impairment is expected. We found in our qualitative study [
6] that functional impairment in people with SMD is the result of not only symptoms related to the illness but also a multitude of other factors related to the patient, family and the socio-economic condition.
Our new measure has the ability to detect changes overtime. We found statistically significant mean changes in functioning scores after six weeks of treatment of new cases and cases in relapse. When we see the changes in terms of effect size and SRM, they are small among service users and moderate among caregivers. The small effect size among service users may be due to under reporting of their functional impairment [
46] and lack of their capacity to evaluate themselves as a result of active symptoms [
47]. The positive and statistically significant correlation between the change scores of symptom severity and functional impairment indicated that change in symptom severity is accompanied by change in functional impairment. This gives evidence to the convergent validity of our new measure.
Our qualitative study and the free listing and pile sorting exercise clearly revealed that women are expected to accomplish all aspects of the domestic tasks in addition to supporting men in farming related activities. So, including domestic tasks in the scale and having separate versions for men and women is useful to have the full picture of the functioning of women with SMD. Nevertheless, our validation study showed that the women specific items have the same properties as the shared items in terms of both convergent validity and responsiveness to change. The women specific work items have also moderate or strong correlation with the shared work items. These all indicate that for quick epidemiological population based large surveys, one can omit the women specific items and use only men and women shared items. When one needs to know all aspects of the functioning of women with SMD and to asses improvement in routine clinical practice, it would be wise to include the women specific items in the scale and have separate versions for men and women.
The strengths of our study are that we followed rigorous procedures to develop and validate the new measure; and the study is nested in a big longitudinal research project. One limitation of our study is that in the validation study, the WHODAS and the BFS were administered one after the other with no time gap in between. Therefore, the responses to the items of the first scale might have influenced the responses to the items in the next scale. A number of studies have indicated that functional improvement after treatment, in people with SMD, lag behind symptom changes [
48,
49]. So, our six weeks follow-up period may not be enough to evaluate the extent to which the new functioning measure can pick meaningful changes.
Acknowledgments
We are grateful to all the participants (people with SMD and their caregivers) for giving their time and the data. The psychiatric nurses in the Psychiatric Clinic of Butajira general hospital are gratefully acknowledged for their help in recruiting the participants and completing the clinical assessment. We would also like to thank the project outreach workers in the SMD course and outcome study project for completing the structured interviews.