The findings are discussed according to the themes identified. The first section explores the human context in which biomedical disease management occurred. The second section explores the informal networks people established and how they were integrated into everyday life.
Human context of disease
Realms of suffering
The medical management of MDR-TB was found to occur in the context of profound human suffering. This theme emerged through discussion and observation.
“Physically X looks very weak and X must be very frightened”
Excerpt from field diary: 5th July 2014.
Interview data revealed suffering to occur according to a disturbance in human connection, either with the self, with others or within a spiritual network.
Inevitable thoughts on death created an uneasy relationship with ‘the self’ as participants began to examine their existence in the context of MDR-TB. This ranged from inner turmoil to thoughts of suicide.
“I didn’t know what else to do so I thought killing myself was the best thing”
MP1.
This led to a breakdown in relationships within the family or wider social network.
“...because he can’t share his stress with some other [person], he is speaking [only] with me, maybe fighting with me”
FPFM5.
In search of stability people sought solace in religion, whereas others found this to be another source of uncertainty and grief.
“So when I was not able to get up my sister took me to the church in Madivalla, they said a prayer and I was able to stand”
MP1.
“He lost a little trust in God…faith was reduced”
FPFM5.
This lead to the understanding that spiritual suffering was not restricted to religion, instead representing an unmet human need that encompasses and transcends the traditional bio-psycho-social model. Imbalance within someone’s spiritual network was a principal theme within the data and represented a disturbance in the connection people felt with themselves, others around them, and their living environment.
“…my elder sister had two children. I missed to kiss them and hug them, really I missed it. I keep wanting to kiss and hug them but I am worried [about disease transmission], I maintain the distance, I do not kiss her, I do not share food or anything
…” FP2.
Points of suffering
The relationship of human suffering to the context of biomedical treatment models highlighted three themes upon which suffering was noticeably triggered or accentuated; prognostic uncertainty, vulnerability in disease disclosure and the trauma of drug treatment.
Prognostic uncertainty caused spiralling doubt that would permeate through anticipated major life events. All patients had been told their disease was ‘definitely’ curable however limited information had been given beyond this.
“...no council was done they just made a diagnosis…” FPFM05.
This fed into the aura of uncertainty that would lie on the path ahead, creating anxiety and apprehension.
“I don’t know, I believe that it will be curable, I have been told that there is a 100% cure, I have been taking the treatment so I believe that it will be cured, I really don’t know, you should ask the doctor or the sister about this...”
FP03.
“…it is common for respondents to convey a sense of positivity with respect to their prognosis, however when given the opportunity to ask questions to me everyone wants to know why it [MDR-TB] has affected them, the likelihood of it coming back and the chance of cure…”
Excerpt from field diary: 5th July 2014.
This theme later developed across the whole data set:
“I keep on thinking whether it is curable or not. Then marriage will come and I am worried about it…”
FP2.
In disclosing their diagnosis, participants faced a range of reactions that varied according to social context. Themes included disdain, pity, fear and aggression.
“So they scold me because they know that I am having the disease, but what can I do? I just move away if they tell me to go, I cannot do anything about it…”
MP1.
Vulnerability was also detected at the doctor-patient interface. In the context of privately-funded healthcare, participants were often subject to long in-patient admissions. This often represented a lack of participant involvement in decision making which came at a physical, psychological and financial cost.
“Actually, no, hospital is not that clever, because they will think maybe it’s something else [not TB] and they will ask him to stay [in the hospital]…That made him feel even more stressed…”
FPFM5.
Whilst TB chemotherapy was seen as the cure, it was in itself a source of suffering. Side effects range from disturbance in vision to lethargy, nausea and vomiting. In some cases, the cure became as much of a burden as the disease. One interviewee highlighted that as a parent, watching your child endure this suffering could lead to a vacillating appreciation of what may be right or wrong.
“She [participant’s mother] kept telling me don’t worry. She is also crying, when they put [administer] the injections I will be crying and my mum also is crying”
FP2.
Resources, practices and support networks
Recognition of the importance of holistic care, and the role of the community in providing it, arose through observational data collected during a SOCHARA workshop:
“…I am fascinated to learn of the concept of community health and it strikes me as being incredibly relevant yet almost completely unspoken of in the [UK based] National Health Service. The work done in communities here implies that medical services are not just a model or structure for consumerist use but embody a fluid process that enables/empowers people for collective action and care. Here the community is able to maintain health and provide health within its own means...this is a radically different approach that is well characterised by their ‘paradigm shift’ i.e. moving away from professional ‘control’, moving from a medical model to a social model, from patients to the individual, disease to health, providing to enabling, drugs and technology to knowledge and process...”
Excerpt from field diary 16th June 2014.
Interview data developed this theme, highlighting participants reliance on their family and friends to provide supportive care. This ranged from practical help, such as transport and food, to a deeper level of care that embodied themes of compassion and love. This was demonstrated by one participant who could not cope with the sight of her tablets. Her father collected her tablets from hospital and her mother prepared them daily in a specially made box.
“Yeah, she [Participant’s mother] only cuts my tablets and gives it to me. I did not see anything...So my mum gave me separate in the box also. That was the main thing; yeah I didn’t see a bunch of tablets…”
FP2.
The assiduous nature of a mother’s care, combined with the sense of normality conveyed by family-led care, was vital to the participant’s well-being and ability to continue treatment.
In search of support of this kind, participants would explore human connections - both physical and metaphysical. This was demonstrated by a participant explaining how he survived feelings of self-harm and suicide:
“So going to the church helped reduce that thought of killing myself, I was also admitted for two/three months in the hospital and this reduced that thought also…When I was in the hospital the doctors used to come and take care of me, give me tablets, the food was also free, I used to not think so much about the house and also there used to be five or six other patients in the ward and I used to talk to them and my time would pass so all these thoughts [of suicide] would not come”
MP1.
From this, it became apparent that support structures were interdependent. This represented holistic care and, as a concept, was fundamental in addressing a state of equilibrium that we may call ‘health’. The holistic care observed was similar in construct and theory to that provided by a specialist palliative care service.
“Because of all the support I am well now, without the support it would have been difficult”
MP1.
In contrast to observed community support networks, medical structures of care promoted fear amongst the community, whilst demonstrating coercion as a means of control.
“…sometimes when I didn’t come to the hospital the doctor used to come and give me the tablets, so if the doctor used to come home with the tablets the neighbours used to scold me saying that you have this disease, so from that day onwards I always used to come to the hospital and take the tablets myself.”
MP1.
Importantly, community-led care occurred naturally and was initiated and provided for by lay people. In the hospice environment, the intervention was creating an environment where community support could flourish, thereby promoting and strengthening social networks. Observational data from hospices highlighted how the environment held and supported staff and patients alike.
“
…I was struck by the importance of the environment in creating a positive and healthy atmosphere. This was mirrored by the staff who were engaged and enthusiastic about their work…it became clear that the medical consultation was only one step in the chain of support that assisted patients and their families back into the community or in the case of those with end stage disease, through the process of death….”
“After sharing lunch with the staff, we walked back through the grounds where X mentioned how they had built the surrounding gardens from scratch, he spoke of the positive atmosphere this created for him which resonated with my initial feelings on arrival.”
Excerpts from field diary 16th June 2014.
These findings were in contrast to experiences from hospitals which were often overcrowded and fearful places.
“I waited to speak to the Doctor for an hour and half, during this time I was surrounded by TB patients...Many were emaciated, some barely conscious...this felt like an isolating and fearful place full of pain.”
Excerpt from field diary: 4
th
July 2014.
“...actually they asked him to stay [in the hospital]...the environment he didn’t like because all the other patients are more severe [severely unwell], he was just started [on treatment]...he got even more scared around them...”
FPFM5.
It was found that structures valuing human connections as therapeutic were of fundamental importance. Peoples’ individual stories, their resources, practices and networks of care, were brought together and integrated into everyday life through the creation of a social platform, be that a hospital ward, a park, a place of worship or a cinema.
“I speak with my friends also like going to movies and things like that.”
FP2.
“I like to go to temples, I feel comfortable, I express my feelings with God…”
FP2.
“So I used to go and sit and parks, also I used to go and walk around”
MP1.
Being able to ‘connect’ in the broadest sense of the word allowed for the development of a network that encouraged self-care and community-led care.