1. Perceived preference for home-based treatment and care and high acceptability
‘I feel that getting treatment at home is better than hospital.’ Patient 01
All twelve patients and family members interviewed stated a preference for home-based care over hospital-based care, with some mentioning that this was conditional to the drug supply being constant and reliable. Acceptability of this model of care was high: home-based treatment and care was accepted by all health-care receiving respondents; the two district MoH respondents; all three village health team respondents; and five of the six health-care worker respondents. The one health-care worker respondent who was ambivalent was a nurse who feared secondary transmission within the community. The majority of community members who participated in focus group discussions stated a preference for home-based treatment and none mentioned a lack of acceptance of having patients in their communities being treated for MDR-TB at home. All members of village health teams interviewed said they would be willing to deliver MDR-TB treatment at home.
Home was perceived as an environment which:
•Is more conducive to recovery than hospital:
‘I saw during the home-based care period patients get a lot of improvement in home than in the hospital.’Family member 05
‘I think from home someone recovers much faster than when hospitalised.’ Health-care worker 03
•Enables more psychosocial support due to the closeness of family and friends and perceived connectedness in comparison with feelings of isolation and loneliness associated with hospital admission:
‘Having people coming home, chatting with you, it is nice and encourages you to take the drugs.’ Patient 02
•Provides free time for both the caretaker and the patient to conduct other activities such as performing small jobs and having social interactions.
Respondents also mentioned socioeconomic barriers to accessing treatment in hospital, including distance, affordability, transport costs, living costs while in hospital and distance from home creating indirect costs through lack of ability for the patient or caretaker to work. These barriers were seen as being particularly prohibitive of treatment access if the hospital were to be a centralised institution such as Mulago hospital in Kampala (the proposed provisory institute for treatment nationally), with the socio-economic factors mentioned above as well as language barriers making the vast majority of patients and family members feel they would be unable to receive treatment from this location.
‘If I was in the hospital in Kampala the cost for transport is very expensive and someone must come to see you and stay for 1 month maybe, then they cannot do other things in this time and it would be very costly.’Patient 02
‘Because the patient comes from a poor family, he cannot raise the money to go to Mulago [National Referral Hospital in Kampala]’ MoH 02
Home-based treatment and care was therefore seen to be more accessible to patients and their family members, as well as more acceptable to both health-care receiving and health-care providing respondents.
2. Fears of transmission of MDR-TB and other infections
No patient or family respondents mentioned fears or association of treatment at home with heightened risk of secondary transmission of MDR-TB. However, three health-care workers and several key informant respondents mentioned fears of potential MDR-TB transmission with home-based care and highlighted the need for isolation of patients during the initial phase of treatment, either in a special tukul at home or in a local isolation ward. Respondents mentioned perceiving hospital as being an environment that poses greater risk for catching other infections via nosocomial transmission and the majority of respondents felt the home environment would be more protective of patients’ health in this regard.
Community members in general were positive about the idea of patients being treated at home: the majority of women and young women in two focus groups thought home was the best place for people with MDR-TB to be treated; and nearly half the young men in another focus group preferred home - the other half were either unsure or said they would prefer hospital due to perceptions that treatment would be more likely to be delivered on time. No participants of these community focus group discussions mentioned a fear of MDR-TB transmission to themselves associated with patients being treated at home within the community.
Several respondents mentioned the existence of stigma towards MDR-TB patients, in each case linked to the association of MDR-TB with HIV. The stigma perceived or enacted was not due to the MDR-TB itself but rather its association with HIV, and was said to usually come in the form of rumours. Participants felt that this was due to health promotion messages that state that HIV and TB go hand in hand and therefore someone with TB is assumed to be HIV positive. In addition, sy