Three arching themes emerged: 1. Formal support services available 2. Enablers and 3. Barriers to the utilisation of the formal support services in institutionalised patients with AD/ADRD in rural communities in South Western Uganda. Under each theme there several sub themes and they are described below:-
Theme 1: Available formal support services
Participants outlined a number of formal support services provided by community and faith based institutions that offer specialized services to the geriatric population in South Western Uganda. The formal service offered included nutrition support, medical services, physiotherapy and psychosocial support. Details of each of these services are provided below:
Medical services
Medical services across the two facilities were provided by qualified nurses, clinical officers and medical officers. Participants from the two facilities revealed that they always received treatment from the facilities. They received a wide variety of medications such as analgesics and antibiotics for the different conditions that their clients/patients presented with. Medications were always available as evidenced by their excepts below
‘…They give him medicines each time we go to the facility. Even when they come to the community, they bring different medicines for him… they even put medicines in his ears because he does not hear well…’’
Key informants confirmed the fact that patient received medical attention from the facilities. Patients were routinely reviewed from the facilities and drugs prescribed for them. ROTOM has a community outreach program, through which patients who could not easily access the facilities received medical related services from their respective communities during outreaches.
‘…we have medication for every one depending on the condition. We even have a doctor who comes every month to check on us and if we have a serious case he is called immediately. Sometimes the doctors find these patients in their homes during our outreach program and treat them…’’
Physiotherapy
A key informant from one facility stated that they used to have physiotherapy services for their clients a year ago. The other two facilities never had physiotherapy services. Physiotherapy was very useful for the patients who are unable to move on their own and those who use wheel chairs. However, the facility no longer provides physiotherapy services because the service provider left and no one else has the skills needed to deliver physiotherapy.
‘…Regarding physiotherapy, there was a white lady who was training the nuns, she had materials for lifting, creams for massage and they had plays (drama) which they used to do and exercises. We no longer do physiotherapy for our patients because the white lady left and none of us has physiotherapy skills...’’
Nutrition support services
The key informants revealed that they provide nutrition support services to the clients that come to their facilities. These services were provided by health care workers and ranged from providing information to the patients and caregivers about benefits of a balanced diet in some facilities to the actual preparation and serving of food to patients in other facilities. In addition, some facilities provided food stuffs such as maize flour, sugar, among others to the patients and their families.
‘… First of all they get nutrition services like breakfast, lunch and supper. We prepare for them all the meals and we make sure we give them a balanced diet including fruits, vegetables and others…’
… We are given food stuffs like maize floor, beans, and others to prepare from home. They used to give us prepared food at the facility, but nowadays they no longer provide it to patients and their caregivers. These days they teach you how to prepare food and which food to prepare for the patients…’
Psychosocial support
Participants reported that they and the patients received psychosocial support services from the facilities such as counselling and prayer. This kind of support was provided by trained counsellors and spiritual leaders and included formal counselling and spiritual support. Only one facility however had a qualified counsellor who was providing formal counselling services.
‘… Whenever he would refuse to take treatment, people (Health workers and spiritual leader from ROTOM) would come and talk to him and he accepts to take treatment…’
‘… We have a counsellor who has been here for those who can talk to her but we also have priests who come to visit our patients for spiritual encouragement and prayer when things are not going on well but there is a lot to do for them…’’
Theme 2: Enablers to utilisation of formal support services
Participants outlined a number of enablers for utilisation of the formal support services provided by community and faith based institutions that offered specialized services to the geriatric population in South Western Uganda. We grouped enabling factors as patient related, caregiver related and institutional related enablers. Details of each of these factors are provided below
Patient related enablers
Participants reported that a number of factors enabled their patients to use the formal support services in the different facilities. These factors included knowledge of the existence of the services, perceived need for the services, perceived usefulness of the services and the belief that these services would improve quality of life for the patients. Most of the participants reported that when patients’ quality of life and mood improved, they were encouraged to continue using the services.
‘… She was treated from somewhere and her condition failed to improve so they referred us to this facility where she got better… Patient always wants to go there; the services have greatly improved his quality of life…'
Participants reported that the services their patients received helped to improve the health status of the patients and their quality of life. They further reported that the services are readily available and free of charge.
…The services my patient receives are important… very important because we can’t afford, you find you don’t have any single coin and they help us get transport and drugs, it’s very important…
Caregiver related enablers
Participants reported that patients are able to utilise the formal support services because of a strong family social support system. The family members support the care of the patient and mobilise resources needed for continuity of the care as shown in the excerpts below
‘…The family members have been helpful…they mobilise resources needed to care for our mother…’
Furthermore, caregivers find it easy to take patients to the different facilities, because the supplies are always available, health workers are available and willing to attend to the patients. This greatly reduces the waiting time.
‘…When you reach the facility, health workers immediately take care of the patient… you do not spend a lot of time waiting for them…’
Institutional enablers
Participants identified institutional related enablers that allow their patients to freely utilise the formal support services provided in these facilities. These ranged from the availability of free services, creation of awareness in the community about the availability of services and conducting outreaches and home visits to bring the services closer to the people.
‘…The services are given to us free of charge… You only need transport to take the patient to the facility. Sometimes they (Health workers) give you transport back home…’
‘…The whole community around Muhanga is aware of the services ROTOM provides so it is easy for you to take your patient there when he/she falls sick…’
Theme 3: Barriers to utilisation of formal support services
This theme describes the barriers to utilisation of formal support services in rural communities in South Western Uganda. The theme emerged from 3 thematic categories and these are patient related barriers, care giver related barriers and institutional barriers
Patient related barriers
Participants reported a number of patient related barriers that influence utilisation of formal support services. Sometimes, the patients refused the services while other times, the patients will want a specific person to provide the service. If that specific person is not around, then they prefer to cancel or miss the service.
‘…There are like two or three sister cannot allow those without veils to touch them that is also a challenge and we don’t wish it to be like that they are our mothers…I saw one she refused food whenever you would go there to bath or dress her she would refuse and close the door and later alone they took the key and you would find her in the corridor or compound completely naked…’
Participants further reported that patients misplace their belongings and accuse caregivers of stealing them. This makes the caring role tiresome and difficult.
…Taking care of my grandmother is very hard…you can’t do anything for her and she appreciates. When something gets misplaced she will say it’s me who has stolen it and yet she forgot where she placed it…
Caregiver related barriers
A number of caregiver related barriers were identified. Participants reported caregiver burden. They mentioned that the caregiver role is very demanding and does not allow them to do any other activity. This is demonstrated by the quote below
‘…First of all I get tired I wake up at 5am and the way you have looked at them they all have to bath, dress and then clean the whole house go for mass…This is a lot of work and we are very few here…’
Some participants reported that memory loss is part of the normal process of aging and would not take their elderly persons to seek care since it is considered normal. This is derived from the community’s perception.
‘…The patient is very old and the community thinks this is part of the normal process of aging and therefore no need of seeking care…’
Furthermore, participants reported lack of social support from the rest of the family members. The role of caring for the elderly patient with dementia is normally left with a few family members which is challenging
..It is a bit challenging for me… the other family members are not directly involved in her care… the work is too much for me…
Institutional barriers
Participants identified a number of institutional related barriers to utilisation of formal support services. Access to facilities and financial resources were top barriers. Most of the participants noted that the facilities are far and getting there with appropriate transport is a huge challenge. At times, the family does not have the money to cater for transport. Having said that, it could also be particularly challenging to get transport even when the money is available to pay for the trip.
…The facility is a bit far from home so I have to get a car or boda boda (motorised taxi) to take her if there is any problem and that requires money for transport which may not be available….Transport is a big problem in case the patient falls sick in the night like 3am it’s not easy to get someone to take you to the facility even when you have the money…