Chronic Sorrow

Archives of Psychiatric Nursing 29 (2015) 43–48

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Archives of Psychiatric Nursing

journal homepage: www.elsevier.com/locate/apnu

Research Paper

Chronic Sorrow: Lived Experiences of Caregivers of Patients Diagnosed

With Schizophrenia in Butabika Mental Hospital, Kampala, Uganda

Connie Olwit a,⁎, Seggane Musisi b, Sebalda Leshabari c, Ingvar Sanyu d

a Department of Nursing, College of Health Sciences, Makerere University, Kampala, Uganda b Department of Psychiatry, School of Medicine, Mulago Hospital, Makerere University College of Health Sciences, Kampala, Uganda c Muhimbili University of Health and Allied Sciences, Salaam, Tanzania d Infectious Disease Research Collaboration, Kampala, Uganda

a b s t r a c t

During the experience of chronic sorrow, people feel emotional discomfort, and hopelessness. It may progress to pathological grief, depression or trigger some of the psychiatric disorders in individuals who are vulnerable. The study explored the experience of chronic sorrow among caregivers of patients diagnosed with schizophrenia. A descriptive qualitative design using focus groups and indepth interviews was used. Most caregivers experienced chronic sorrow and identified trigger factors and coping strategies. The findings may enlighten psychiatric nurses in the care of mentally ill patients, caregivers and family members. The results may also help policy makers to prioritize mental health in the country.

© 2014 Elsevier Inc. All rights reserved.

Worldwide, severe mental illnesses (schizophrenia, bipolar disorder, psychotic depression) take on a chronic course with frequent relapses, deterioration in function and a downward social drift (Caqueo-Urízar, Gutiérrez-Maldonado, & Miranda-Castillo, 2009; Nasr & Kausar, 2009; WHO, 2011; Yusuf & Nuhu, 2009). Severe mental illness (SMI) is often associated with lost economic production and inability to relate with loved ones (Eakes, 1995; Talwar & Matheithua, 2010). In low income countries like Uganda, mental illness is also often associated with lack of proper care resulting in gradual deterioration in social functioning of the individual and finally demanding total care (Aboo, 2011).

Family members are consequently challenged to assume responsi- bilities of taking care of individuals diagnosed with the SMI such as schizophrenia. The resulting grief which is experienced by the family and caregivers of the severely dysfunctional mentally ill has been described as chronic sorrow. Chronic sorrow has thus been defined as the “periodic recurrence of a permanent, pervasive sadness or other grief-related feeling associated with ongoing disparity resulting from a loss experience” (Eakes, Burke, & Hainsworth, 1998, p.180). Chronic sorrow has been explored in developed countries among family caregivers especially parents caring for young children with physical or mental disorders (Burke, 1989; Clubb, 1991; Dammsch & Perry, 1989; Fraley, 1986; Fraley, 1990; Golden, 1994; Hummel & Eastman, 1991; Mallow, 1994; Olshansky, 1962; Phillips, 1991; Seideman & Kleine, 1995; Shumaker, 1995; Wikler et al., 1981).

Chronic sorrow may be viewed as a normal response to a major loss. However when complicated, it may progress to a pathological grief state, depression or complicated grief (Eakes et al., 1998; Gordon,

⁎ Corresponding Author: Connie Olwit, MSN, BSN, RN. E-mail addresses: [email protected] (C. Olwit), [email protected]

(S. Musisi), [email protected] (S. Leshabari), [email protected] (I. Sanyu).

http://dx.doi.org/10.1016/j.apnu.2014.09.007 0883-9417/© 2014 Elsevier Inc. All rights reserved.

2009). Grief, itself has been described as a central experience by people diagnosed with mental illness, their families or their friends (Young, Bailey, & Rycroft, 2004). There is limited information, however, on the experience of grief-related feelings of caregivers of mentally ill patients, especially in developing countries including Uganda. Chronic sorrow may trigger psychiatric disorder, such as depression, in caregivers with genetic vulnerability.

This study sought to explore chronic sorrow as an expression of grief as seen among the caregivers of patients diagnosed with schizophrenia in Butabika Mental Hospital in Uganda. Specifically, the study was designed to (i) describe the feelings, emotions and distresses translating as chronic sorrow among the caregivers of patients diagnosed with schizophrenia at Butabika Mental Hospital, Uganda; (ii) identify the triggers of chronic sorrow among these caregivers; and (iii) identify the coping strategies used by these caregivers. In the end suggestions were made regarding strategies that can be adapted by health workers in helping caregivers of patients diagnosed with schizophrenia to cope with their chronic sorrow.

METHODS

This study was conducted at the Butabika National Mental Hospital in Kampala, Uganda. Participants were recruited from the outpatient department and inpatient wards where relatives of patients came to visit the patients. Butabika Mental Hospital is the only national psychi- atric referral hospital in Uganda, a country of about 32 million people. It has a bed capacity of 900 and admits more than 6000 patients with mental health illnesses annually (Ministry Of Health, 2010). The inter- views were carried out in a room at the outpatient department that was specifically allocated to the researcher in order to provide privacy to the study participants.

44 C. Olwit et al. / Archives of Psychiatric Nursing 29 (2015) 43–48

The study employed a descriptive qualitative design using focus group discussions (FGDs), and in-depth interviews. These two data col- lection methods were used in order to get more detailed information from the participants. There were 10 in-depth interviews and two FGDs. The FGDs were divided by sex as it has been reported that the experience of chronic sorrow differs in the two sexes (Atkinson, 1994; Eakes, 1995). The focus group of female caregivers consisted of 7 members and that of the males consisted of 5 members. There were 2 withdrawals from the male focus group discussion because of the dete- rioration of their patients' mental health illness and one withdrawal from the in-depth interviews because of a family emergency. The care- givers who participated in the in-depth interviews were different from those who participated in the FGDs.

The participants who were involved in the in-depth interviews were from the outpatient clinic while those who participated in the focus group discussions were visiting patients in the wards. The sample size was based on the principle of data saturation for qualitative studies where saturation is the point when no new or relevant information is emerging (Wood & Haber, 1994). In this specific study, chronic sorrow was defined as “periodic recurrence of a permanent, pervasive sadness or other grief-related feeling associated with ongoing disparity resulting from a loss experience” (Eakes et al., 1998). The loss experience was considered to be someone diagnosed with schizophrenia since it is a chronic illness with some disabling effects.

Ethical clearance was sought and obtained from the Muhimbili University of Health and Allied Sciences (MUHAS) Ethical and Publica- tions Committee. Approval was obtained from Uganda National Council of Science and Technology (UNCST) for the research to be carried out in the country. Permission was then obtained from the Butabika Mental Hospital research committee before data collection was begun. The study participants were fully informed about the purpose of the study, the procedures of data collection as well as risks and benefits. Confiden- tiality was maintained throughout the research process. Participation was voluntary and the participants were told that they were free to withdraw their participation at any time without prejudice or with- drawal of medical services.

Purposeful sampling was employed so that the researcher was able to interview people who were knowledgeable about their patients, articulate and willing to talk at length so that details of the feelings, emotions and distress could be obtained. It is acknowledged that, such purposive sampling as a non-probability sampling technique might give less chance of obtaining a representative sample and hence intro- duce bias (Polit & Beck, 2006). Sampling was done with the caregivers who were caring for the patients who had been diagnosed with schizo- phrenia either at the outpatient clinic or those who had inpatients at the time of the study. The first 10 participants who consented to participate in the study were interviewed and the next participants were scheduled for the FGD.

The informants were selected if they were living with a patient who had been diagnosed with schizophrenia for more than 1 year; and were responsible for taking care of that patient; were at least 18 years of age; and were able to speak Luganda, the most commonly spoken language in the central region of Uganda.

Data Collection and Procedure

Ethical clearance and permissions were granted before the data collection process commenced. A registered nurse (RN) was trained to be a research assistant. The research assistant identified potential participants and the researcher then explained the purpose of the study including risks and benefits to the participants. Written informed consent from those willing to participate was obtained. Consent included permission for the interview to be audio taped. The study participants were told that the interview would take approximately 20–30 minutes. The face to face in-depth interviews and the FGDs were conducted in a closed room ensuring privacy for the study participants.

Instruments and Study Variables

Socio-demographic characteristics including age, gender, occupa- tion, religion, marital status, relationship to the patient and level of ed- ucation were collected using a standardized questionnaire. The face-to- face in-depth interviews were guided by a modified version of the Burke/Eakes chronic sorrow questionnaire (Burke/NCRS, 1998) which was first piloted among 3 caregivers who were not included in the study. It was then modified accordingly before data collection. The mod- ifications that were made involved the social demographics in order to fit the setting in Uganda and part (V) and (VI) stated below were added to the questionnaire. The Burke/NCRCS (Caregiver Version) con- sists of 16 open-ended questions for caregivers and was translated into Luganda. This questionnaire is designed to evaluate (i) the occurrence of chronic sorrow, (ii) the intensity of the sorrow, (iii) milestones at which chronic sorrow occurs, (iv) the individualized coping factors, (v) advice given by caregivers and (vi) advice care givers would give to healthcare professionals. The tool was modified with the help of two experts: one in qualitative study design and another senior researcher.This tool has not been validated in the Ugandan setting although it is the ideal tool to explore the phenomenon of chronic sorrow. For the focus group dis- cussions, the following questions were asked: (i) Describe the feelings and emotions that you experience when caring for your patient? (ii) What distresses do you encounter that bring back the sadness and grief related feelings when caring for your patient? (iii) What do you do to overcome these distresses? (iv) What can health workers do in order to help you deal with the feeling, emotions and the distresses you encounter?

During the interviews, the non-verbal communication of study par- ticipants was noted in a note book. On completion of the discussions/in- terviews, the study participants were thanked for participating in the study and were reassured that all the information and their contacts or their identities would remain confidential. The memory card and note books were then locked up in the box until they were transcribed and translated from Luganda to English. The taped focus group discus- sions were transcribed and then translated from Luganda to English. There were four questions that were discussed, these involved describ- ing feelings, emotions and distresses that the caregivers experienced; the coping strategies they used and finally the advice they wanted to give the health workers.

Data Analysis

Data were analyzed using the content analysis technique described by the Graneheim and Lundman (2004) framework for both in-depth interviews and focus group discussions. Audio taped in-depth inter- views were transcribed verbatim and translated to English. These were then typed directly into a Microsoft word program. The infor- mants' words were captured word for word and were checked against the recorded interviews to ensure no information was missed. The in- terview transcripts were printed out for ease of analysis. The interviews were read several times to obtain the sense of the scripts and the text. The caregivers' experiences were brought into one text, which consti- tuted the unit of analysis. The texts were divided into condensed mean- ing units, abstracted and labeled with codes. The codes were compared based on similarities and differences and sorted into categories and sub categories. Finally, the categories were formulated into themes which were documented.

Trustworthiness

To increase the credibility of the study, the researcher included two different methods of data collection where participants with various perspectives for example various genders were involved. This contrib- uted a richer variation of the phenomenon. The time that was taken to build rapport and trust with informants was sufficient. This helped the

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participants to feel at ease and shared their experiences freely and in depth. There was also persistent observation during the interviews to cross check whether the body expressions were persistent with information that was being shared. Data source triangulation was also used in the study in order to improve credibility. Member checks were also done after the data were collected and analyzed. Some of the study participants were called back, the findings were shared with them and they reacted to them. Some of the member checks were done at the end of the interviews by summarizing the information shared the participant.

To facilitate transferability, a clear and distinct description of charac- teristics of study participants, data collection and process of analysis was done. A rich and vigorous presentation of the findings with appro- priate quotations was done.

RESULTS

Socio-Demographic Characteristics

There were 8 males and 14 females who participated in the study di- vided up as three males and seven females in the in-depth interviews and five males and seven females in the focus group discussions. In terms of the relationship of the participants to the patients, 5 were spouses, 9 siblings, 6 parents (mothers) and 2 children. Their mean age was 38 years with range from 21 to 68 years. For the in-depth inter- views 7 of the participants had income generating activities while 3 did not have. After data analysis, the following themes came up, experience of chronic sorrow, trigger factors, coping mechanisms, helpful/not help- ful situations and caretakers' suggestions.

The Experience of Chronic Sorrow

In-Depth Interviews The presence or absence of chronic sorrow was determined from the

participants' responses on the Burke/Eakes chronic sorrow question- naire (Burke/NCRS). Nine of the 10 (90%) participants in the in-depth interviews had experienced chronic sorrow. They described a range of grief-related feelings associated with the initial knowledge of their rel- ative being diagnosed with schizophrenia. These participants recounted numerous situations and circumstances over time where those feelings were re-experienced. Caregivers who experienced chronic sorrow re- ported grief-related feelings to be on and off over a prolonged period of time. Five of the nine participants who evidenced chronic sorrow cried during the in-depth interview exhibiting an expression of the overwhelming emotion which they had. A 26 year old daughter whose mother had been diagnosed with schizophrenia 18 years previ- ously vividly stated:

I feel very sad, I feel pain, and I feel like crying (cries). This sadness comes and goes, but it can never go away unless when God decides and I know that she is gone; she is gone. If it's not that, I will always feel sad. (Daughter caretaker, in-depth interview)

Another example was expressed by a single mother who had a mentally ill son. She said:

At times I would cry to God wondering how long these problems were going to last. I would think it was better to die and leave this world than watch my child in that state (Mother caretaker, in-depth interview)

When the participants were asked to recall the feelings they experi- enced when they first realized that their relative was mentally ill, they described a variety of feelings including sadness, shock, confusion, de- spair, fear, devastation, pain, anger. An example of these feelings was expressed by a 42 year old single mother who had a son who was diag- nosed with schizophrenia 2 years previously. She said:

I felt so bad, so sad. I am a single mother and this child has been helping me. I was so devastated. People said he was bewitched and others said probably it was because of cannabis, I was in a state of confusion. (Mother, caretaker, in-depth interview)

The most prevalent feelings expressed by the caregivers in describing both their initial reactions to the relative's mental illness and the feelings experienced periodically over the course of their relative's illness were those of “sadness, feeling bad, devastation and frustration”. A 29 year old lady whose elder sister was diagnosed with schizophrenia in 2005 said:

I felt really bad because it was something that had never been in our family and we were wondering where it was coming from. I felt so devastated (cries).” “What increases my sadness is her lack of acceptance. I want to help her, be there for her but probably because I am younger she doesn't want help from me yet I know she needs help. That saddens me. (Sister, caretaker, in-depth interview)

Focus Group Discussions

The feelings and emotions expressed in the FGDs were similar to those expressed in the individual in-depth interviews. Among the 12 caregivers who participated in the FGDs, feelings of sadness were cited most frequently followed by stress disturbances, anger and emo- tional pain/anguish. Other reported grief-related feelings included feel- ings of devastation, fear, worry, frustration, confusion and shock. For the majority of the participants, the intensity of these grief-related feelings was reported to be more intense at the beginning when they first learnt of their relatives' mental illness of schizophrenia. Eight out of the nine who evidenced chronic sorrow experienced these more intense grief- related feelings at the beginning with only one participant who experi- enced them many years later. Some of the caregivers compared their feelings to the feelings somebody would have if they lost a loved one. However, after taking their relative to hospital and knowing that the symptoms could be somewhat controlled with medication they had some hope with time and with lessening of the intensity of feelings even when there were triggers.

Trigger Factors

In-Depth Interviews Caregivers reported grief-related feelings characteristic of chronic

sorrow triggered by many factors. These factors fell into the following categories: unending care giving; patient's change in behavior; manage- ment of crises; society reaction to the mental illness; and missed com- panionship. Unending care giving included frequent and lengthy hospitalizations, recurring symptoms, excessive use of their energy and/or time, financial constraints, overwhelming responsibility, and los- ing their independence. The second category was ‘change in behavior’ of the patient which included refusal to go to hospital, refusal to take med- ications, and resentment. The third category of ‘society reaction to the mental illness’ included beating or mistreating the mentally ill, abandoning the mentally ill, and wrong perceptions/misconceptions about mental illness resulting in stigma. Management of crises was re- ported by many of the caregivers who said it was saddening to see their relatives relapse or experiencing side effects from medication which they had trusted would improve the illness with time.

Focus Group Discussions During the FGDs, caregivers reported several factors causing them

distress when taking care of their mentally ill relatives. The most fre- quent factors were in the category of unending care giving and society's reaction to mental illness. Under ‘unending care giving,’ participants identified frequent relapses and unrelenting symptoms, lack of

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resources and the impact on family members, the latter including fear of the unknown, unpredictability, personal safety and thinking of the future. Societal reaction to mental illness according to participants involved abandoning the mentally ill which would result in them wandering on streets, society's perceptions misconceptions of mental illness often resulting in stigma and putting additional pressure on the caregivers. The seven caregivers pointed out general health workers as the most stressing factor. This was well captured from one of the mem- ber in the male FGD who stated that:

Health workers are the most painful thing for me. It's true we have patients who make us sad but health workers make us sadder.(Participant, male FGD).

Among the most frequently reported distressing factors were communications-related. The caretakers wanted healthcare workers to show understanding and flexibility when dealing with their relatives with schizophrenia. Poor communication involved long waiting hours when the caregivers came with their patients for reviews, mis- communication with appointments, no timely communication of any problems/emergencies, poor means of communication, and miscom- munication from students without supervision and poor customer care. There were 15 citations related to communication issues from seven members from FGDs and two in-depth interviews. Below is an ex- ample of what one male FGD member stated:

…a nurse comes with files, speaks English then you request her to repeat in Luganda (local language) so that you understand well but you then see her in another mood, she becomes angry, quarrels. Then what happens because you didn't understand English, your patient's file comes and you don't get to know. They read your name and you do not hear, so other people come and leave you there… That thing makes me feel sad, angry, I feel very bad! (Participant, male FGD)

Coping Mechanisms

Participants in FGDs were asked to state what they do to overcome stressors in order to feel better. Their responses were categorized into the following: interpersonal strategies, action oriented activities, cogni- tive and emotional strategies.

Interpersonal strategies included talking to other people who showed understanding, looking for support from surrounding people, sharing with a friend in the same situation, listening to encouraging pro- grams on radio, watching television (TV), reading encouraging words (like from the Bible), going to church and praying (trusting and having faith in God). Action oriented activities included watching movies, TV, listening to the radio, doing chores, and sports. Many caregivers turned to religion for answers. Almost all of them identified God as the solution to their problems and worries. Many of them resorted to prayers, trusting God and their faith. Emotional coping included crying, avoid- ance (taking short breaks like moving away from home temporarily), and keeping feelings to oneself. Crying was often observed during the in-depth interviews and FGDs. Four of the nine caregivers who scored positive for chronic sorrow on the Burke/NCRS questionnaire cried dur- ing the interviews and one did during the female FGD. The cognitive strategies included burden acceptance and positive thinking which were used by two of the nine caregivers who scored positive for chronic sorrow on the Burke/NCRS questionnaire.

Helpful/Not Helpful Situations

Most caregivers reported relatives and friends to be helpful during tough and emotionally laden situations. The friends ranged from neighbors, church members, age mates/peers and community leaders. The relatives ranged from husbands, brothers, sisters, parents, aunts and uncles. The caregivers reported they were helpful in terms of

offering sympathy, consoling and comforting as well as counseling, giving company, advising and seeking alternative solutions including divine healing in church. Health workers were reported to be helpful in terms of providing medication to reduce on the symptoms and to reduce hospitalization frequency especially with severe symptoms. The most frequently reported useful help from health-workers was providing medication. Two of the nine caregivers who scored positive for chronic sorrow reported health-workers being friendly and encouraging and one caregiver from the female FGD felt health- workers were welcoming and willing to help. However the majority of the caregivers reported healthcare workers as being a big source of triggers of chronic sorrow.

Unhelpful factors were reported to be stigma, cracking negative jokes about mental illness and laughing when the relative got sick. The police were also identified as being unhelpful when they were needed most especially when support was needed to bring the patients to hospital or when they were potentially dangerous to the others. The health system was seen as frustrating, hectic and many times not user friendly and not understanding of the handicaps occasioned by mental illness.

Caregivers' Suggested Recommendations

Caregivers were asked what the health workers could do to help them deal with the feelings, emotions and distresses brought on by feel- ings of chronic sorrow. The caregivers responded with the following themes; showing understanding, health education, and community sensitization as well as communication, counseling, resources, accessi- ble services and follow up visits. Showing understanding, counseling and health education were the most frequently cited recommendations. Under health education several topics were suggested with the most common being increasing awareness by teaching about mental illness; how to handle mentally ill patients; what to do in case of a mental health emergency; and expectations while caring for the patients. Community sensitization included educating the community about mental illness, their expected responsibilities, and changing their nega- tive perception regarding mental illness. Resources involved availability of drugs, facilitation of health workers, and involvement of the police. Lastly on the theme of communication, caregivers cited a variety of con- cerns which needed improvement such as customer care, proper and timely communication.

DISCUSSION

Our sample of 22 participants was small but representative of the feelings of caretakers for the severely mentally ill attending the national mental referral hospital. There were more females than males because the females, in this country, generally take up the role of care-giving/ caretaking. It is the females who stay with the patients at home, take them to hospital and stay with them in the hospital while the men go looking for money which they provide to facilitate the care giving. This is not unusual in African communities with patrilineal kinship sys- tems, Uganda inclusive.

Nine out of ten participants (90%) scored positive for chronic sorrow. This prevalence of chronic sorrow is similar to findings by other researchers among people experiencing different types of losses. For example among the studies that were carried out by Nursing Consortium for Research on Chronic Sorrow (NCRCS), out of 98 persons, 87 (88%) evidenced chronic sorrow (Burke, Eakes, & Hainsworth, 1999). Olwit and Jarlsberg (2014) had similar findings (88%) among the people with facial disfigurement in Uganda experienced chronic sorrow. The intense emotional experiences of chronic sorrow in this study are con- sistent with findings in the Western world; consisting of confusion, sad- ness, devastation, anger, fear and worry (Eakes, 1995). In another study, Eakes et al. (1998) found that the intensity of these feelings varied from person to person. This could be because of the mixture of the study

47C. Olwit et al. / Archives of Psychiatric Nursing 29 (2015) 43–48

sample, because grief-related feelings change with time, being more in- tense at the beginning when caretakers experience disbelief, shock, con- fusion and devastation but which later on abates with time. This, therefore points out the importance of health workers taking time to talk to the caregivers especially with newly diagnosed patients in hospi- tal. This helps caretakers express their emotions/feelings and clear out any misperceptions as health-workers provide them with health education about mental illness and help them to develop positive coping strategies.

Regarding triggers that produce feelings of chronic sorrow, the most predominant were in the themes of unending care giving, change in be- havior, societal reaction to mental illness and management of crises. Similar to the findings of Burke et al. (1999), our findings are not sur- prising because schizophrenia is a chronic mental condition, with pa- tients often relapsing and, portraying odd behaviors and mannerisms to the chagrin of the caregiver. Hospitalization triggered severe chronic sorrow emotions in the caregivers, a finding similar to Roick, Heider, Toumi, and Angermeyer (2006) where caregivers of patients diagnosed with schizophrenia showed high levels of stress upon their relatives being re-hospitalized again and again although in this study, hospitali- zation was viewed as helpful as patients received treatment in hospital and got better. Our caretakers experienced excessive use of energy and time as well as financial strain, findings which were termed as objective burdens by some researchers (Caqueo-Urízar et al., 2009; Idstad, Ask, & Tambs, 2010). Societal reaction to the mental illness of schizophrenia was negative and often suggesting stigma similar to findings by several other researchers (Angermeyer & Matschinger, 2003; Buizza, Schulze, Bertocchi, Rossi, & Pioli, 2007; Young et al. 2004).

Our caregivers' coping strategies (interpersonal, action oriented, emotional and cognitive) were similar to those reported by Hainsworth (1996) and Eakes (1995). However, our caregivers used more internal strategies than external ones contrasting with findings by Olwit and Jarlsberg (2014) who found that facially disfigured people who experi- enced chronic sorrow used more external coping strategies than inter- nal. This could be because of the discrimination and stigma that surrounds mental illness in the communities in Uganda. It is, therefore, not surprising given Ugandan society's negative perception of mental ill- ness (Buizza et al. (2007). These findings imply that effort is needed to in- crease awareness of mental health and curtail society's perceptions and misperceptions regarding mental illness in the communities.

Finally, healthcare workers were reported by caregivers to be helpful during the whole experience, in terms of providing medication to re- duce the symptoms although they were often reported to have poor communication and the mental health systems' similarly reported by Eakes (1995). The police were also identified as being unhelpful as they did not seem to know their role in the mental health system.

Limitations

This was a study confined to one SMI, schizophrenia. Moreover the study took place in urban setting in Central Uganda. The findings in the research may therefore not be representative of the all population of caregivers of schizophrenic patients in Uganda.

CONCLUSION

This study showed that caregivers of patients diagnosed with schizo- phrenia experienced chronic sorrow as defined by Eakes et al., 1998. The common triggers that lead to feelings of chronic sorrow were related to the themes of unending care giving, change in behavior, societal reaction to mental illness and management of crises. Health workers were reported by the caretakers to be unhelpful especially when it came to communication. Caregivers in this study felt there were wrong community perceptions about mental health and much stigma in Ugandan society. The police were also reported as not be cooperative when approached to help in containing aggressive patients. The

different coping strategies employed by the caregivers included, inter- personal strategies e.g. sharing feelings with others, reading and praying, action oriented activities e.g. sports, working, and watching movies, emotional strategies e.g. crying, avoidance and cognitive strate- gies e.g. burden acceptance and positive thinking.

There is a need for nurses to assess the coping mechanisms used by the caregivers, and re-enforce positive strategies and offer time to the family members of mentally ill patients to express their feelings and finally provide health education to the public on mental health related issues in effort to reduce stigma or and discrimination and creating awareness of their role in mental health.

Lastly, ongoing research is needed regarding chronic sorrow in different situations of loss in developing countries because it helps health workers understand better what loss victims and family members go through and it guides in the care given.

Acknowledgment

My sincere thanks to the sponsor, Norwegian government through NOMA project for their financial support that enabled this research to be carried out. Special thanks my family members and friends for being understanding and supportive throughout this period. Thanks to the almighty God for bringing us this far, without him this would not have happened.

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