Socio-demographic characteristics of the participants
The study participants consisted of postpartum women, their caregivers, and healthcare providers that were Western trained. A total of 23 participants were recruited for the study. There were 5 psychiatric nurses, 2 psychologists, 8 postpartum women, and 8 caregivers. The sample size was small because we were looking for the smallest number of participants that would meet our criteria for pre-testing, modifying and adapting the psychoeducation programme. First it was important to bring all stakeholders together and these were the health providers that were taking care of the postpartum women with mental illness and secondly we included the postpartum women and their caregivers as the psychoeducation was aimed at them.
The psychiatric nurses and psychologists’ mean age was 40.4 and the range was between 26 and 48 years. The postpartum women’s mean age was 29 years with a range of 20 to 43 years. The mean age for the caregivers was 31 years with a range of 20 to 46 years. The majority of the women with their caregivers had attained education of between 1 and 7 years. Only one postpartum woman reported being married and all postpartum women presented with a bipolar disorder diagnosis as shown in Table
1.
Table 1
Socio-demographic characteristics of mothers and caregivers
Age
| Oldest | 43 | 46 |
| Youngest | 20 | 20 |
| Mean age | 29 | 31 |
Sex
| | | |
| Male | - | 2 |
| Female | 6 | 4 |
Education
| 1-7 | 3 | 2 |
| 8-11 years | 3 | 3 |
| >11 years | - | 1 |
Marital status
| widowed | 2 | - |
| separated | 2 | 1 |
| Single | - | 1 |
| Visiting union | 1 | - |
| Married | 1 | 4 |
Relationship to mother
| Parent | - | 2 |
| Sibling | - | 1 |
| Uncle | - | - |
| Husband | - | 2 |
| Friend | - | 1 |
Diagnosis
| Bipolar in manic phase | 4 | - |
| Bipolar in depressive phase | 2 | - |
| Organic psychosis | - | - |
Results were obtained from three data sources; the individual interviews, the consultative group meetings, and the piloted family psychoeducation. Data collected at the different stages were merged to derive the themes presented in the result section. Individual interviews were carried out with the nurses and the psychologists. The individual interviews were done for purposes of eliciting information on how psychoeducation would be carried out in a most appropriate manner using the psychoeducation tool kit that the nurses and psychologists had read prior to the interviews. Many of the quotations below are from data obtained from the individual interviews. Data that arose from the individual interviews was used in modifying psychoeducation. The data from the consultative group meetings were obtained and merged with data obtained from individual interviews for a number of reasons. The first reason was for validating information obtained from the individual interviews. The second reason was for purposes of complementing data obtained from individual interviews. Some of the quotations in the results section are from the consultative group meetings. Data obtained from the consultative group meetings were used to modify the psychoeducation after the piloting had been carried out. The piloted psychoeducation programme enabled us to pick out issues that postpartum women and their caregivers emphasized. These issues were later raised in the consultative meetings and were incorporated in the already piloted psychoeducation programme.
These data sources yielded two broad themes:
i.
The process of family psychoeducation
ii.
The content of family psychoeducation
Theme I: Process of family psychoeducation
The sub-themes within the process of family psychoeducation were: effective communication including the use of metaphors, cultural background including same language and same sex moderators, appropriate dress code, using one family member for the intervention, low literacy, and finally, flexibility in timekeeping.
Regardless of cultural diversity, psychological programs require that moderators or therapists that facilitate the psychological sessions acquire the basic knowledge and skills that are necessary for any therapeutic encounter [
21]. To this effect both the nurses and psychologists stressed the importance of having moderators that were good in communication and counselling.
“Moderators should be able to effectively communicate with the mothers and they should be trained in counselling”
Psychiatric Nurse 1
The importance of effective communication was enhanced by use of locally appreciated idioms, metaphors and proverbs. It was apparent that the use of culturally accepted idioms aided in communicating with the women especially when there was need to make emphasis. One such proverb was
“Lubaale mbeera nga nembiro kwootadde”. Translated literally, this proverb means
“God helps those who help themselves”. The relevance of this metaphor/proverb to the mothers was that even when they still believed in their ancestors` powers to heal them, it was crucial that they help themselves by seeking and complying with Western treatment.
b)
Cultural background including language, age and same sex moderators
Cultural background and language were discussed within two areas. One was that moderators or psychoeducation facilitators should use the same language as the postpartum women. This has been pointed out to be an enhancer in communication to clients [
22] as it fosters effective communication between postpartum women, caregivers and moderators/facilitators.
“Psychoeducation facilitators should preferably be female, know the language the mothers know best and share the same cultural background with the postpartum women”
Psychiatric Nurse 3
It was deemed important that the facilitators of the psychoeducation process should be mature women that the mothers could easily relate with. To this effect one participant pointed out that:
“A moderator or psychoeducation facilitator should appear old enough to understand issues related to childbirth and marriage. Having a moderator who is too young will give the postpartum women the impression that she is not well versed with their problems related to childbearing”.
Psychiatric Nurse 4
Along with other issues, moderators or pyschoeducational facilitators brought into the sessions their own cultural beliefs, values and practices. If these were shared with the patients, then moderators stood better chances of understanding their clients and vice versa [
23].
The other aspect of language was to tailor the psychoeducation discussion to the lay understanding of medical terms. It is very easy for professionals to be carried away in their explanations and use complicated terms that participants do not understand. Therefore, emphasizing the use of simple language that everybody would be comfortable with during the discussion was emphasized.
“There is a need to be cautious when in discussion because medical people are fond of using medical jargon that the rest of the people don’t understand. Sometimes when people don’t understand they may be afraid to ask, become bored and do not come back.”
There was a need to remain respectful of participants and this was highlighted by appropriate dress code by moderators or psychoeducational facilitators and respect for the diverse religious beliefs. For example, women psychologists needed to dress in long enough skirts or dresses that were considered culturally appropriate. Also, religious beliefs of the participants needed to be respected by making sure that participants were not judged according to their religious beliefs.
“If we are looking at making postpartum women and their caregivers comfortable in the discussions, then we should dress appropriately. Not exactly the way they dress but so that they stay respectful of us”.
“If we don’t show respect to their relatives, they will not want to come back. Whatever faith one belongs to, needs to be acknowledged with respect.”
Psychologist 1
d)
Incorporating one family member
The nurses stressed the importance of working out a practical and sustainable program that was feasible when it came to implementation, especially in view of the limited resources. It was suggested that the program should initially incorporate one family member as opposed to many family members because it would be cheaper to obtain transport for one person than for the whole family. It would also mean that the rest of the family would be able to continue with their usual work as one respondent indicated below:
“It is not practical to have all family members attend a psychoeducation session in our setting. How many members should we allow, considering that we have extended families? It would be too expensive and not practical for all family members to attend. Moreover, their work would come to a standstill and the drop- out rate would be high”.
Participant 1 from one of the consultative meetings
Having fewer family members would also cut down on communication costs in making phone calls to remind people to attend psychoeducation sessions
“It is hard enough to successfully contact one caregiver. It is almost impossible to contact many family members when they may not even be staying in the same location at the time of contacting them. They may also not have means for communication.”
Psychiatric Nurse 1
It is well documented that the cost of psychoeducation has hindered its availability even in high income countries [
24]. In this regard, the nurses were against a whole day workshop which would imply providing lunch and snacks at break time for the participants. This in turn would not be financially feasible and sustainable for the current study but also for future practice.
e)
Low literacy as a challenge
The nurses stated that through observations, literacy levels were low, and the postpartum women could refuse participation when they learnt that they would have to read and write in the intervention groups.
“I think there is a need to cater for those who cannot read and write. To avoid making them feel discriminated agaisnt, we should not bring in the idea of reading and writing”
“We should explain in explicit language that even without writing, participants will be able to recall the discussion. We should also be flexible enough that if some participants wanted to write and wanted to obtain reading materials, these should be catered for.”
Participants and moderators would agree on a convenient time for the forthcoming psychoeducation session. However some participants were regularly not coming on time and thus inconvenienced other participants. This was especially observed when it rained in the morning. This called for flexibility on the part of the moderators/psychologists and those that were on time. Hence it was noted that at the end of each session, a reminder on the importance of timekeeping would be made.
Theme II: Content of family psychoeducation
The sub-themes within content were: inclusion of participants’ lay perceptions on causes and treatment of mental illness; family planning education; demystifying myths about breast feeding when a postpartum woman has mental illness; potential income generating activities, and finally an emphasis on personality changes that the woman undergoes when she develops the condition, before and after the psychotic episode.
a)
Inclusion of lay perceptions on causes and treatment of mental illness
It was necessary to find out what the participants perceived to be the cause and treatment of the mental illness as this often influenced patients’ help-seeking behaviour [
15,
16]. Previous research has documented the Ganda tribe as identifying supernatural powers as being the cause of severe mental illness [
25]. Often this belief leads them to non- compliance to Western treatment for mental illness. The nurses suggested exploring the patients’ cultural perceptions about causation and treatment of mental illness. These were incorporated in the psychoeducation content.
“Many patients and their caregivers believe that mental illness is a result of witchcraft or it is a clan illness. For you to introduce Western ideas about causation and treatment, you need to understand what people think regarding the perceived causes and hence the treatments.”
Psychiatric Nurse 1
b)
Inclusion of Family Planning education
Some caregivers and postpartum women believed that family planning education should be made part of the psychoeducation for postpartum women.
“Can you start teaching about family planning in these sessions? My daughter has six children and each one has a different father. Every time she breaks down, she conceives with a different man! I am not able to look after all these children… You need to teach us about family planning”
Caregiver 7
Another caregiver said:
“I also wish there was family planning. My daughter breaks down every time she delivers. Her husband then brings her and dumps her at my doorstep! Then I have to take care of her and when she improves, she runs back to her husband and conceives again.”
Caregiver 3
“The only time that I fall sick is when I deliver. I need family planning”
Postpartum woman 2
And one husband of a postpartum woman said:
“This illness came on after her delivery. Is there not something that can be done because after all we have six children! These children are enough.”
Caregiver 4
The need for family planning education and services was further supported in one of the consultative meetings with the nurse who argued that postpartum women would be able to obtain these services at the same time while undergoing the psychoeducation intervention.
The importance of women to continue breastfeeding even when they were mentally ill was highlighted by the participants. During the discussion, some participants reported cultural beliefs that breastfeeding a baby when one was acutely mentally ill would introduce the mental illness to the baby later on in his or her life. Others expressed fears, for example once a postpartum woman stopped breast-feeding the baby, it was important not to breastfeed the baby again because the assumption was that the breast milk would be spoilt and this would make the baby physically ill. The extracts below illustrate the beliefs:
“I have been refused to breastfeed my baby again because I have been told that my breast milk carries the mental illness and my baby may grow up to eventually develop mental illness just like me”
Postpartum woman 6
“I have been told not to breastfeed my baby again because people say that my breast milk has gone sour during the time I have been away in hospital”
Postpartum woman 2
Considering that the infants of postpartum women were missing out on the benefits of breastfeeding and the fact that Uganda is a low income country, all the participants felt that the idea of stopping breastfeeding while mentally sick should be targeted in the psychoeducation intervention. This was raised in the last consultative meeting that included the women, their caregivers, the nurses and the psychologists.
d)
Income-generating activities
There was indication from the group discussion that one of the reasons why women did not comply with medical treatment was the failure to obtain money for transport to the hospital for reviews or to buy medications. Coupled with this was the fact that the majority of postpartum women could not sustain employment because of the nature of their mental illness. The postpartum women and their caregivers proposed an incorporation of income generating activities in the problem solving skills of psychoeducation to financially make them competent:
“We are sometimes not able to come back for medication because we lack the money for transportation to Butabika”
Postpartum woman 1
“It is difficult for me to think of coming back to hospital when I don’t even have food in my house”
Postpartum woman 3
e)
Changes in personalities of postpartum women before and after the illness
Postpartum women were of the view that their caregivers needed to understand that when the women were irritable or when they destroyed property, it was because they were ill and not that they destroyed property intentionally. Moreover it was also important for them to dispel the culturally held belief that mental illness could not be cured or improved and that once mentally ill, one is forever “mad”.
“I think that it is important to emphasize to our caregivers that although we may behave like we understand what we are doing, we are really sick. They don’t want to think that we are sick. They continue to say that we are pretending when we destroy property and when we insult them during our relapse periods.”
Postpartum woman 2
“That is true. My relatives think the same way too. They think that I purposely intend to harm them. So when I improve, no one wants to stay with me. They are very angry at me and they insist that I destroy property and insult them intentionally”
Postpartum woman 4
Although symptoms of the illness were a part of the standard psychoeducation, it was deemed necessary to put emphasis on these because the mothers thought they were being misunderstood by their caregivers as mentioned above. Furthermore, many postpartum mothers feared being branded “forever mad” and preferred to keep their mental illness a secret, even from their husbands for fear of abandonment.
A summary of standard Family psychoeducation and the modified Family psychoeducation are shown in Table
2. The derived contents specific to postpartum women with a psychotic illness in the setting were incorporated. Whereas standard family psychoeducation is concerned with educating patients and families on epidemiology of specific mental illnesses, the nurses and psychologists in the research team opted for incorporating the cultural lay perceptions on causes of mental illness since these determine the help-seeking behaviour of the patients. Family planning education, breastfeeding and income-generating activities are not included in standard family psychoeducation but were included in the modified psychoeducation.
Table 2
A comparison of standard family psychoeducation for bipolar disorder with the modified family psychoeducation for postpartum mothers with a psychotic illness
1. Joining
|
1. Joining
|
Identify early warning signs | Same as in standard family psychoeducation |
Explore reactions to illness |
2. Conjoint
|
Identify coping strategies, triggers | Same as in standard family psychoeducation |
Review family networks |
3. Education workshop
|
Investigate ways to reduce burden | Instead of a whole day workshop, this was spread into other psychoeducation sessions |
2. Conjoint
| The epidemiology and biology of the illness were left out. Instead Lay perceptions including cultural beliefs about causes and treatments were incorporated, and early warning signs and triggers were dealt with in a participatory manner |
Allows family to come together as a unit before joining the multifamily group |
3. Education workshop
|
4. Problem solving, communication and vocational training
|
Whole day workshop to address history and epidemiology, biology of illness, treatment and side effects, and family emotional reactions | This remained as in standard family psychoeducation but family planning, and breast feeding were incorporated along with specific income generating activities and the main moderators were the caregivers. |
4. Problem solving, communication and vocational training
| |