Tackling the escalating burden of care in Uganda: a qualitative exploration of the challenges experienced by family carers of patients with chronic non-communicable diseases | BMC Health Services Research

Family carers (n = 44) participated in the study across both sites (n = 34 for FGD) and (n = 10 for individual semi-structured interviews).As noted in Table 1, of the 44 carers who participated across both settings, n = 26 (59.1%) were female and n = 18 (40.9%) were male. The average age of participants was 46 years old. Prior to taking up the caregiving role, many carers worked in either informal or formal employment. This included carers who were: peasant farmers, road sweepers, teachers, businessmen, and women, shopkeepers, and mechanics. One carer was retired with his current income source unknown. Family carers in the study provided care to patients suffering from a range of conditions including sickle cell disease, cancer, epilepsy, mental health-related illnesses, Alzheimer’s disease, dementia, multi-morbidity (cancer/HIV/AIDS), liver cirrhosis, diabetes, and hypertension.

The duration of care ranged from two months to 43 years. Participants engaged in multiple caregiving roles with tasks including: provision of basic care needs: food provision; maintaining patient hygiene and general wellbeing; administering medication and managing symptoms including measuring blood pressure, and monitoring patients movement. Carers provided companionship, spiritual, psychosocial and emotional support, whilst also communicating with extended family members and health and social care professionals. These activities were largely similar across age groups, male and female carers, as well as in both rural and urban settings.

Family carer experiences

To a large extent, there was continuity in the key themes identified across settings. Participants portrayed their caregiving role as both fulfilling and challenging, however, in both settings, comments on the challenges of caregiving far outweighed those comments relating to positive aspects of caregiving. This paper presents participant challenges according to the following themes (1) emotional challenges (2) challenges relating to carers’ health and well-being (3) financial and employment challenges (4) logistical and access challenges (5) marital and social disruption (6) health literacy challenges, and (7) the role of the community.

The discussion of each theme will be supported by indicative quotations, presented with the following anonymous identifiers which included the relevant health facility’s name.

Emotional challenges

Whilst some participants perceived their caring role to be fulfilling, the majority of carers presented caregiving as a difficult experience that induced feelings of sadness, anxiety, worry, frustration, and guilt. Feelings were often attributed to a lack of support, concerns around finances, limited knowledge of the illness and its progression, and complications of the disease which often engendered feelings of helplessness. Emotional challenges were also associated with strong feelings of empathy for the patient, and with providing end-of-life care for some patients. Conflict arising from stresses within the caring relationship were also identified. Care was generally provided either in the patient’s or caregiver’s home, with carers also worrying about their ability to provide financially and practically for members of their own household as well as caring for the patient.

What can worry you most is that maybe my children have not eaten, or my children don’t have sugar, you can be worried that now I am here, but my children are lacking what to use at home, things like that. (FIDI Hospice 1)

Participants described feeling ‘great sadness’ at the patient’s pain and suffering. Often conveying a strong sense of empathy for the patient.

I felt pain as a parent, I had hope that maybe he would have some medicine to at least help him reduce the size of the tumor, but he told me that there was nothing. (FIDI Hospice 2)

These days every time I bathe her, sadness comes in when she cries, then I also get sad. (FIDI Hospice 1)

Challenges relating to carers’ health and well-being

Participants reported that caring often had a negative impact on their own health and well-being. Carers reported physical ill-health, which negatively impacted their caregiving capacity. These negative health outcomes further affected the quality of care patient’s received.

Yes, I have chest pain and I have ulcers…. That’s the challenge I find, carrying an adult has caused me chest pain. …Ulcers are due to worrying about my sister. (FIDI Hospice 1)

Participants also expressed fatigue, experiencing inadequate sleep due to the twenty-four-hour nature of their caring responsibilities.

Healthwise challenge is sleepless nights because you have to be there and be attentive at all times, you can’t get that rest that is needed. (FIDI Hospice 5)

A lot of tiredness since the carers are alone and get tired. (FFGD Hampton HC 6)

Caring did not stop even for those who were pregnant, with one participant expressing concern about caregiving responsibilities whilst also being pregnant.

Like last time, the time I took care of X, I was pregnant for this child … generally, it was so hard for me, and I was also worried of the child inside me to keep it alive. (FIDI Hospice 3)

Participants also reported concealing their health needs from both the patient and from health providers in order to continue their caring role, afraid that disclosing personal sickness might result in the removal of the patient.

Now, today the doctor came but I feared to tell him about my sickness. (FIDI Hospice 1)

Financial and employment challenges

Pervasive financial challenges and constraints were identified across both settings. The chronic and often long-term treatment required for many NCD patients contributed to extensive costs, which were assumed by carers. Carers reported increasing financial difficulties with ‘dwindling resources’ as their caring responsibilities continued over time. Carers often struggled to provide for a patient’s basic needs including the need for food, medicine, transport, and medical treatment.

Because of lack of money, I cannot afford to buy what she needs. (FIDI Hospice 4)

As noted, some carers had to support two households: the carer’s family home where their children or other family members often remained, and the patient’s home,

I earn little, and I have to make sure the money I earn is enough to care for my mother and my family. (MIDI Hampton HC 4)

Moreover, financial difficulties were exacerbated by carers’ limited time for income-generating activities and paid employment. Carers also reported that they could no longer save money which affected their potential to invest and conduct future business.

The changes are brought about by the patient’s illness. … l cannot even save any money. Everything I earn goes to caring for the patient and the family. (MIDI Hampton HC 4)

Some participants stopped working entirely, others indicated that they lost their jobs and or businesses, while some described trying to maintain employment whilst acting as primary carer, but eventually having to leave work.

I am a farmer and it’s raining, and people are planting but I have given up everything for the sake of my sister. (FIDI Hospice 1)

Carers who maintained jobs struggled with care coordination in the absence of other much-needed support and, as noted, often eventually gave up their employment.

I got a challenge when l used to work with X (Organization) and had a very busy work schedule by then. During that time when l would be away working, my son would get attacks every two weeks and would be taken for blood transfusion. This forced me to resign from my job and come back home to take care of my son. My coming back home helped me a lot because if l had not done so, my son would have been dead a long time ago. (MFGD Hampton HC 3)

I used to work and make money, but now l have to focus on the patient and myself. And l used to save some money as well, but now everything goes into caring for the patient and myself. … (FIDI Hampton HC 2).

Participant strategies to address financial constraints included borrowing money and securing medication through credit. Carers also sought financial support from family or community members, resulting, on occasion, in alienation from their social networks.

We cannot work to take care of ourselves… that causes over-dependency and always asking for help for two people (FFGD Hampton HC 7).

People are scared of us, and they think we are going to beg them. (FFGD Hampton HC 6)

Logistical and access challenges

The impact of logistical challenges was identified across both settings. Many carers discussed the challenges related to transport, balancing work and carer roles, access to health facilities and supplies as well as high costs associated with multiple appointments and travelling long distances. The majority of participants described significant challenges in relation to transport, particularly transporting a patient to hospital, with associated fuel costs. Travel costs were exacerbated by multiple appointments and the need to travel long distances.

The challenge is transport, the patient is for carrying so she needs a means of transport from home to the hospitals. That’s the challenge we face, then carrying because you have to carry her to the car, that’s the major problem when going to hospitals. (FIDI Hospice 1)

Transport from one facility to another is also another problem in cases of referrals. Sometimes he (the patient) becomes very sick in the middle of the night and you have to find a way of reaching the hospital. He cannot walk really well anymore, he is weak as a man, so many things a man has to do, I have to do instead. (FIDI Hampton HC 1)

Participants also reported experiences reflecting inequalities in access to healthcare, and medical supplies, for example having to secure supplies outside the public healthcare system.

If l could get assistance in terms of accessing care in those powerful health facilities so that the patient can be assessed and given medication that may help relieve her condition other than just seeking care from the local health care facilities in this community.(MIDI Hampton HC 2).

Decisions about which health facility to access were also determined by finances.

Money determines where to take the patient,” (MFGD Hampton HC 3).

You look into your earning and see what money you can manage; it can be that the facility near you is expensive for you to manage. There is where you can get free support and so you go there. (FFGD Hospice 1)

Marital and social disruptions

Participants described significant disruptions to their family life including impact on their marital relationships, which resulted from the emotional, sexual, and social disruption of the marriage. This was often attributed to a wife caring for another family member and being seen to neglect her husband or family. This was perhaps most obvious when carers were required to relocate to the home of the patient.

I gave up all that and said ‘let me go and look after my sister’. So that’s a problem because I no longer have anything, I left my home. (FIDI Hospice 1)

If it is your family, you give it less time because you must be with the patient you can’t mix the two. …and basically the patient needs more time than the others. (FIDI Hospice 5)

In some instances, marital disruptions ensued when female carers were blamed for the child’s illness as if they were the direct cause of it. One participant reported:

The challenges I get is that of home misunderstandings because some men think that when an illness comes, just like that of my child, then that child is not his. They think that maybe the child’s illness was inherited from the child’s family because to men, the sick children are not theirs, be it sickle cells or what, they (men) are not responsible.’ (FIDI Hospice 2).

Challenges relating to health literacy

A lack of prior training or skill in providing care was identified with carers often taking on their caring role in an unplanned way. Carers identified challenges associated with limited knowledge of the illness and felt ill-equipped to deal with issues such as a nosebleed for a patient with sickle cell disease or back pain. They identified the need for information about the disease, disease progression, and patient management.

However, some carers described positive experiences in developing their caregiving skills and increasing their knowledge of the treatment pathways, for example, one carer described how she learnt to manage the patient’s diet and medication.

Because they tell me how to administer the medicine in time, to measure for her what to drink in time and the small meal she can manage to eat. Now I am used to that at night.

…. I understand all that very well. (FIDI Hospice 1)

Whilst not explored directly, the ways in which carer’s conceptualised illness became apparent. Some carers accepted the medical model, others concurred with a more traditional cultural belief system. These beliefs influenced the patient’s journey including treatment choice and adherence to treatment regimes.

For many years, we have been giving her herbal medicine. But because herbal medicine was very expensive, we resorted to taking her to x (health centre). (MIDI Hampton HC 1)

The role of the community

Many participants acknowledged the role that the community, including neighbours, friends, or religious groups, played in supporting them and their patients. However, the level and nature of support varied. Support by the church was appreciated, but some religious leaders were perceived as being exploitative; for example, emphasizing the need to donate money to the church at the expense of providing spiritual care. Community support included encouragement,

The community feel pity on me…. Some community members encourage us. (MFGD Hampton HC 3)

Help with financial and practical needs was also identified.

I get help from my neighbor in (the) form of communication, transport and connections for blood for transfusion. I get help in terms of money for treatment, food and other things from my daughters. (MFGD Hampton HC 3)

Since my patients are fond of disappearing, the community helps me in finding them and bringing them back to me. Sometimes the epileptic patient disappears, and l look for her in vain, then eventually, you see a motorcyclist bringing her back at 9pm. (FGD Hampton HC 8.)

However, some carers reported being discouraged as a result of limited help or negative community attitudes:

The only community member who has been of great help is Mr. X and his wife: He has helped us in various ways; from bearing with us when school fees are due, providing transport to the facility where l cannot afford and money for medication as well. (FIDI Hampton HC 1)