May 14, 2020
From 8th to 18th April 2020, YBU conducted a phone survey of individuals (and their families) within the Kampala and Wakiso Districts recovering from severe mental illness, who have been interacting regularly with the YBU Team as part of enrolment in the YouBelong Home programme between November 2017 to April 2020. Attempts were made to contact 150 persons. Phone access was achieved with 113 persons.
The phone survey addressed two main areas: 1. The level of accurate evidence-based information about COVID-19 held by families contacted in the survey. 2. The impact of COVID-19 and the national lockdown on the physical and mental health of individuals (and their families) recovering from severe mental illness.
Three broad themes emerged concerning the current and impending impact of COVID-19.
Firstly, the survey results indicated that the Ugandan Government’s information sharing strategy about COVID-19 was having an adequate level of impact in the survey group in imparting knowledge about the causes, symptoms, precautions and where to seek health support. Commensurate with the Ugandan Government’s dissemination of official evidence-based information, 67% of participants displayed an adequate level of knowledge of COVID- 19.
At the heart of responders’ comments, however, were expressions of fear and anxiety at the impending COVID-19 crisis. Further survey questions explored this emotional response and provided more detail indicating, amongst family members (including children), high levels of fear, anxiety, a sense of hopelessness and helplessness regarding the level of impact of impending COVID-19, as well as the lockdown. In Ugandan culture, it is not uncommon for people to place catastrophic events or diseases in a context of spiritual/cultural belief that is beyond human intervention or control, and for some in this survey, this framing was evident.
As well, the survey identified a sense of loss of control over one’s life and a need for a sense of personal and family-centred security. Besides knowledge about COVID-19, families were seeking practical guidance and leadership about what to do and not to do if/when high levels of infection rates occur in communities.
Secondly, while those surveyed recognized the extent of their psychological stress, their attention (seemingly at the expense of their psychological needs) was more geared towards prioritizing basic living needs, such as food for survival during the lockdown period. A large number of contacted families were only eating one meal a day during lockdown. Money was reported to be scarce due to stopping of primary income generating activities, leading to food rationing in the family home and inability to pay essential utilities bills. As one family member said ‘we will die of hunger before coronavirus’. The need for daily food for families had been prioritized over other physical and mental health needs, including the need for medications.
Thirdly, and following on from the above, compromised health care has occurred during lockdown. Survey participants with health needs indicated anxiety at not being able to access health centres that, for most surveyed, were many kilometres away. Individuals recovering in the family home from severe mental illness indicated experiencing additional stress, resulting in a relapse of symptoms for some. Health care was compromised through lack of money due to the suspension of income generating activity and the suspension of public transport leading to major challenges in traveling to health facilities to obtain medication refills. These factors have exacerbated the deterioration of physical and mental health conditions, including the difficulty to manage behaviour of some family members with severe mental health conditions. Concerns about access to health services for physical health problems, particularly reproductive health emergencies, has added to individual and family distress.
At the conclusion of the phone survey calls, participants were asked what they thought the Ugandan Government could do to help them during the COVID-19 crisis. The overwhelming majority of responses were related to addressing concerns about the basics of life, particularly the provision of food, and followed by concerns regarding access to medications, public transport and the ability to engage again in income generating activity.
The survey brings out some key insights about the mental health impact caused by the serious threat to life and wellbeing of COVID-19, as well as the mental health consequences of social distancing and national-level lockdowns, consequences that, by their nature, will have long lasting mental health effects on sections of the population following the COVID-19 crisis. This potential risk raises the question of how planning for recovery can be inserted into public health policy planning and implementation during the crisis response phase for COVID-19 in Uganda?
April 02, 2020
Amid the coronavirus pandemic, Ugandans just like people in other countries have been asked to socially distance themselves and restrict their movements. This has created unique challenges for the families and the YouBelongHome team in implementing the pre and post discharge interventions. And while the YouBelong bus can cope with the roads and terrain in getting to villages in normal conditions, now we have to rely on accessing families by phone only. The emotional distress among people suffering from severe mental illness and their family members is immense in this crisis time. So many people worry about becoming infected with coronavirus, how to access essential mental health medication given that public transport is suspended and they cannot get to the hospital or health centre, and they worry about how to survive and pay for food, since many income generating activities are also suspended in a bid to prevent the spread of COVID19.
Our main concern has been how our service users and their families can still get the psycho social support they need amidst this crisis. We are acutely aware that families must be supported and given hope in this high stress time. We have developed a new approach to support them; a crisis care phone support intervention. Many people have mobile phones, and if they haven’t we contact a neighbor, or village elder to assist. We innovatively adapted our regular phone support program with extra skills to deliver interventions on phone calls and support families who might experience barriers to accessing information, care and support. This is a relief to many families with whom we work. We are able to respond to their arising needs for emotional support and reduce their level of anxieties. We are constantly working with them to deal with issues pertaining to their recovery; addressing issues of access to medication, their anxieties, sense of hopelessness and fear, in order to ensure that mental health needs are a key part of the health care system focus on curbing the spread of coronavirus. We work with them to help them gain more confidence by discussing with them coping techniques during this time of crisis. We also hope that the situation will normalize as soon as possible, so that we can continue with much needed support for families affected by mental illness post the coronavirus pandemic
April 02, 2020
The YouBelongHome unique FAMILY NETWORK MAPPING PROCESS enables the YBH team to help the service user and their family understand the relationship patterns that exist in the family dynamic. Through critical analysis of the relationships, family mapping helps the team identify some behaviours that hinder a service user’s recovery. Mapping involves the independent development of two maps. Firstly, with the active participation of the person being assessed in the pre discharge process, the service user identifies the people who are important to them, how they feel about them and how they relate to them. They also get to mention those with whom they experience conflict. Secondly, the team works with the family separately, to produce their own version of their family map. The team then compares and analyses the two maps and this valuable information assists the team in designing an individualised empowerment plan for the service user and their family, in the post discharge process.
‘Robinah’ is 32 years old and she is recovering from an alcohol use disorder comorbid HIV, (with visual and auditory hallucinations), that she has battled with for over ten years. Her mother informed the YBH team that she had tried ‘all’ remedies but her daughter had failed to stop using alcohol.“We have tried the churches, mosques, traditional healers, and local herbs. Our last resort was the hospital but to my surprise, when Robinah was discharged from her first admission, she started drinking alcohol on her first day at home”.Robinah’s mother informed us that despite trying so hard for her daughter to recover, she still does not know why her daughter started using alcohol as soon as she was discharged, and Robinah herself seemed to have no understanding of her behaviour in restarting alcohol abuse.
Robinah and her family were involved in the family mapping process to understand her relationship patterns. One difference that stood out between Robinah’s map and that of her family was that Robinah did not place on the map her 11 years old daughter, while her family did place her in a significant position on their map. The team’s immediate reaction was drawn to this stark omission. This difference prompted the team to make a deep assessment about the relationship between Robinah and her daughter.
In our discussion with Robinah, she became very angry and her eyes became teary, and it is then that we learnt that during her pregnancy (at the age of 20yrs) that she was disowned by her father, who also sent her away from his home because he could not handle the embarrassment of having a daughter becoming pregnant before marriage. Robinah was rejected by everyone she trusted, including the man who got her pregnant. Robinah said that she started to drink alcohol in this period. Robinah had not opened up about this issue until this family mapping stage of the assessment. She said that she hates her daughter because she reminds her of the past experiences.
From Robinah’s story, we could trace that the alcohol use was partly to cope with the stress and rejection that she experienced during her pregnancy. The YBH team was able to design an empowerment plan which involved working with her family to support her emotional distress, the cause of which had not been recognised. The family was also able to understand what contributed to the alcohol use and the YBH team guided them on how to support the service user to recovery. The YBH team also found it important to empower this family with problem solving skills. The family dynamic is settling down, and Robinah is in a positive recovery process.
March 09, 2020
When ‘Rio’ presented with symptoms of severe mental illness, his parents kept blaming each other for his illness. His father blamed the mother for negligence, carelessness, being so rigid and having a history of mental illness in her family. ‘Rio’ was diagnosed with chronic psychosis with negative symptoms at 21 years of age, and the deterioration in his mental functioning was significant. Since 2012, he has been admitted to a mental hospital at least three times a year. This to a great extent was attributed to insufficient knowledge of the family about mental illness and his support needs, as well as the lack of community based mental health care services. His mother walked out of the home, severely broken by her son’s mental health condition, and the constant blaming and accusations from her husband.
His parent’s separation severely affected ‘Rio’ so much that following one of his admissions, he was left in the mental hospital for more than 5 months, with each party feeling unappreciated and refusing to stay with him. His worry about staying in the hospital the rest of his life was rein enforced following a failed attempt by the hospital administration to have his parents take him home.
The YOUBELONGHOME (YBH) programme was his last hope. After requesting to meet his parents at their home, which they agreed to, the YBH team quickly established a relationship of care with the family, and provided psycho-education about the nature of their son’s illness, how greatly their clashes and the breakdown of their relationship contributed to his drastic deterioration in his health and how best they could support him when he returns home. Although it was a heated and lengthy discussion full of outpouring of emotions, the YBH team was able to bring both parents to an understanding of how they can together support their son in recovery, and to start to address their relationship issues. The YBH team further dealt with misconceptions about the possible causes of mental illness that the family deeply held. The parents resolved to learn more about mental illness and to work together. The YBH team arranged for the YouBelong bus to return ‘Rio’ home to his family that was now motivated to support him in recovery. The YBH team conducted a family support and self-care discussion after ‘Rio” had been welcomed home by his parents.
It has been a year now since ‘Rio’s’ parents teamed up to support him to recovery and they are getting it right. ‘Rio’ is living a happier and functional life in his community following the intervention. The YBH team worked with ‘Rio’ and his parents to empower and provide them with some skills to handle conflict and difficulties at home. And ‘Rio’ was encouraged and supported to engage in an income generating activity to further reintegrate him with the community, and to build his self-esteem.
March 09, 2020
YouBelongHome (YBH) team member: “Hallo “Semugera”, thank you for coming for your review, how is your family doing?”
“Semugera”: “We are fine thank you. Now that I do not miss out on my monthly medication anymore, I am able to fend for my wife and children. The little ones attend school without any disturbances. Now I am also able to wake up everyday and go to the gardens to cultivate food for my family. I still get those voices in my head but they do not bother me that much because they are reducing with medication. I have learnt how to deal with them like you taught me and this does not stop me from doing my daily activities………”. He spoke while eagerly waiting in the line for his name to be called to receive his medication. This was a conversation I had with Semugera when he attended his monthly review at Maganjo Health Centre II.
“Semugera” is a peasant farmer. He lives with his family in one of the remote villages at the borders of Wakiso district. He underwent the 14 weeks YouBelongHome pre and post discharge program and he was then referred to his local health centre for follow up. At the time of assessment, Semugera’s wife informed the YouBelongHome team that when Semugera gets a relapse and is admitted to hospital, life at home becomes very difficult. The children get suspended from school because she is not able to raise enough school fees for them. Sometimes they cannot afford a meal a day.
Using the pre discharge assessment tool, the YBH team identified poor medication adherence as one of the causes of relapse. “Semugera” had challenges with maintaining his monthly doses of antipsychotics because it was costly for him to travel to Butabika hospital every month for medication refills.
The YouBelong team informed the family about a health centre where Semugera could get mental health services without having to travel longer distances. The team introduced them to the focal mental health worker at the centre; now Semugera can make any inquiries with the mental health worker about his health.
YouBelong creates awareness for the mental health services provided at primary health care centres. It also works to change community attitudes towards seeking mental health services provided at these centres, and also by training health workers in mental health, aims to ensure continuity of care. Access to mental health services helps people battling with mental illness to maintain recovery and hence contribute to their families’ wellbeing.
December 18, 2019
On 08th November 2019, YouBelong Uganda team participated in a celebration of World Mental Health Day in the Kyaka II refugee settlement center located in Mubende district, some seven hours drive from Kampala. Our team travelled on the YouBelong bus and were focussed on showing solidarity with people suffering from severe mental illness, and advocating for stigma reduction and adequate services for the mental health sector, in Uganda.
The day was celebrated under the theme “Mental Health Promotion and Suicide Prevention”. The celebrations were hosted by American Refugee Committee (ARC) in partnership with TPO, African Humanitarian Action, War Child Holland, Humanity and Inclusion, World Vision, FCA, Good neighbours and UNHCR. The YouBelong team participated in a 5km march with other organisations working with people with mental disorders, and their families. The march aimed to create advocacy against mental health stigma. The guest of honour was Dr.Olaro Charles, Director Health Services (clinical and community) accompanied by Dr Lukwata Hafsa – Ag Assistant Commissioner Mental health.
The team also distributed brochures and fliers explaining the YouBelongHOME model of community mental health care. The YouBelong team also got an opportunity to interact with other organisations in the mental health sector.
December 17, 2019
‘’Vie’s’’ most significant concern prior to her hospital discharge was how she will be able to raise money to support herself and her one year old son. She was abandoned by her husband when she developed her second episode of mental illness. She has been living with bipolar affective disorder for three years. The ability to generate income was identified as a big part of her recovery journey as the YouBelongHOME team prepared her for discharge from hospital. Living with her mother and son, the family’s living conditions were an issue of concern. The family struggles to find food and raise money for other family needs including meeting Vie’s scheduled hospital review appointments. ‘‘my family is really poor, I am not able to get any job and I do not have money to start some activity; I wish I could get back my old life, I was living a very happy life before mental illness. I was sustaining a small business (weaving baskets, mats and table cloths’’. The second episode of mental illness resulted into the loss of crafts making skills and the loss of hope of getting another income generating activity. The long period of hospitalization during her second admission led to loss of her weaving skills.
While working with Vie in the hospital, the YouBelongHOME team built her hope to re awaken her weaving skills. When the team returned her home, she was hopeful and motivated to try to revive her skills in weaving baskets, mats and table cloths for income generation. Through different interactions, the YouBelongHOME team facilitated a discussion with Vie and her mother to identify family resources that can be utilized to buy raw materials for her craft work which yielded good results. She was also able to innovatively learn how to fry chapattis and doughnuts to enhance her income. Vie currently has three sources of income that supplement the family’s subsistence farming. This has built her confidence, a sense of agency and has put her in a stronger position to be supported by family and community members. She contributes to her local community life and lives a happier life. This has also motivated her towards maintaining her mental health recovery.
December 17, 2019
‘’My son has been sick for many years now. Since the day he got his first episode of mental illness, our family has been ridiculed by many community members. They think that I committed adultery and that is why God punished me by giving me a child who has mental illness. It hurts so much that I am treated this way’’, Dodo’s father sadly told the YouBelongHOME team during our visit to his family. Dodo’s father had left him in the mental hospital for over a year. He said that he wanted Dodo to be there for the rest of his life.
“I feel relieved when he is in the hospital……..if community members do not see him around then they do not have much to talk about. Let him stay there; at least I am convinced that he is not going to be of any good when he comes back home”.
Dodo’s father had lost hope in him. Certainly, Dodo felt the same way, as he felt useless and looked down on himself.
When Dodo was returned home, his father was still sceptical of whether he would recover. The YouBelongHOME team educated him about the illness and how to support Dodo to recovery. We also encouraged Dodo to continue with his medication following the support sessions aimed at building hope, that the team engaged with him in the hospital.
It is amazing how much Dodo has changed after the YouBelongHOME process. He participates actively in the mosque. His father said that he is the Mu’azzin of their mosque and the Muslim community likes him so much. He participates actively in his community life and this has brought a lot of hope to him and his family.
“No one can tell that I was the “mad” man who walked on the streets naked”, Dodo mumbled with a beaming facing.
Carers struggle to find answers to the questions they have about the mental illness that their loved ones are battling with. The stigma from the community subjects them to a subjective burden and leads to many people experiencing severe mental illness to be abandoned in mental institutions. The YouBelongHOME team educates, guides and encourages, and empowers families through the challenges they face.
October 21, 2019
On Saturday, October 19, YouBelong Uganda team members participated in a walk near Luzira, a suburb of Kampala, Uganda, to promote mental health wellbeing. The walk organised by Strides of Hope. In attendance were Dr Hafusa Luswata as the guest of honour, community leaders – Nakawa division, Butabika hospital staff, students from Butabika nursing school, and Bishop Cipriano Kihangire, along with other organisations offering mental health services. The walk started at 10:30 am and ended at 12:40 pm, and after the walk other programs started and ended at 2:00 pm.
August 15, 2018
The YouBelong team travelled to a village in the Wakiso district in Uganda to meet “Lucky’s” mother, who shifted away from her husband and children to take care of her 32 year-old daughter, diagnosed with chronic psychosis in 2000.