Thematic analysis – overview
We identified six themes: high variability in health system navigation; frustrations with the biopsychosocial effects of hospitalization; lack of participation in decision-making and uncertainty about treatment course; preference for surgical treatment (vs. traction) based on patients’ own experiences and observations; frustrations with the inequitable provision of surgery; and patients’ resignation, acceptance and resilience in the face of hardship. Many patients receiving non-operative treatment described the devastating social and financial burden of prolonged hospitalization. They felt they were receiving inferior treatment compared to surgery and suspected that richer patients were receiving more timely care.
High Variability in Health System Navigation
Five patients initially presented to a local health center, four to a district hospital, three to a mission hospital or private health center, and four presented directly to KCH. For the four patients who presented to KCH initially, three were immobilized on arrival with skin traction, one patient was placed in a cast. The 12 patients who presented first to other facilities underwent a variety of initial treatments including splinting (2 patient), skin traction (4 patients), and no immobilization (6). The patients who received splinting or no immobilization were all referred to KCH within 2 days. Four patients remained in skin traction for 1–2 months prior to referral. Total time since injury for the entire cohort varied from 6 days to 7 months. Health system navigation for each patient is summarized in Table 2, and representative patient pathways are shown in Fig. 1.
Table 2
Key informant health system navigation
Patient # | Time from injury to initial hospital | Initial hospital | Initial treatment method | Time from initial treatment to referral | Time from referral to current treatment | Current treatment method | Total time since injury |
1 | < 1 day | District Hospital | None | 30 min | 5 days | s/p IMN* | 1 month |
2 | < 1 day | District Hospital | None | 1 day | 11 days | Skeletal traction | 3 months |
3 | < 1 day | Mission Hospital | None | < 1 day | < 1 day | Skin traction | Unknown |
4 | 1 day | Kamuzu Central Hospital | Skin traction | - | 6 months | None, awaiting surgery | 7 months |
5 | < 1 day | Private Health Centre | None | 2 days | 1 day | Skin traction | 3 weeks |
6 | < 1 day | Private Health Clinic | None | Unknown | Unknown | Skeletal traction | 1 month |
7 | < 1 day | Health Center | Skin traction | 1.5 months | < 1 day | Skin traction | 3.5 months |
8 | < 1 day | Kamuzu Central Hospital | Skin traction | - | < 1 day | Skin traction | 2.5 weeks |
9 | < 1 day | Health Center | Skin traction | 1 month | 2.5 months | None, awaiting surgery | 5.5 months |
10 | < 1 day | District Hospital | Skin traction | 2 months | 3 weeks | s/p IMN* | 5 months |
11 | < 1 day | District Hospital | Skin traction | 2 months | Unknown | Skeletal traction | 4 months |
12 | < 1 day | Health Center | None | 2 days | < 1 day | Skin traction | 6 days |
13 | < 1 day | Kamuzu Central Hospital | Skin traction | - | < 1 day | Skin traction | 2 months |
14 | 1 day | Health Centre | Splint | 2 days | 2 weeks | Skeletal traction | 1 month |
15 | < 1 day | Kamuzu Central Hospital | Skin traction | - | < 1 day | Skin traction | 2 months |
16 | < 1 day | Health Center | Splint | 1 hour | 2 weeks | s/p IMN* | 1 month |
*s/p IMN denotes patients who were post-operative after intramedullary nailing (i.e. surgical treatment). |
Patients recognized and expressed frustration with this seeming lack of standardization of care, especially delays in receiving treatment.
“We want an explanation about the treatment and if it is being given out accordingly. Some people are here 5–6 months. Some stay here for only 6 weeks. We wonder why so many different things are happening that are unfair.” – Male, age 25–29
Frustrations with Hospitalization
Patients who had experienced prolonged hospitalizations, usually while receiving skin or skeletal traction, expressed feelings of being trapped and powerless.
“When I was at home, I was able to go to school. I’ve been stationary here for a month. This place is like a detention [prison].” – Male, age 18–24
Patients recognized the shortcomings of the hospital system, describing limited resources, which contributed to their frustrations.
“It was difficult. There was no PoP [plaster of Paris for casts/splints] to treat me.” – Female, age 60–64
“After x-raying they referred me here because they had no equipment.” – Male, age 40–44
Patients also described overcrowded and unsanitary conditions on the inpatient wards, which they felt needed to be addressed by hospital leadership.
“There is no washing of bed sheets. This can cause a lot of problems for our health. Tell them to do laundry. We just sleep here. Nothing is being done. Look at the cockroach… They [hospital leadership] should come and see how things are here. They have written ‘health is life’ as you can see on that wall there, but look at our bed sheets, where is life in this state?” – Male, age 25–29
Moreover, prolonged hospitalization put significant strain on patients and their families. Patients worried about their housing security, childcare, and education:
“I haven’t been able to get money to pay my house rent for 2 months. That’s my worry.” - Male, age 40–44
“I am a farmer and also looking after 4 orphans. There is no one to take care of them. It’s harvest time and crops have been [unharvested] in the field since I came here in February.” – Female, age 60–64
“I used to pay the school fees [for my children] but now the resources are minimal because I’m not able to move.” – Male, age 50–54
Limited Patient Participation in Decision-making
In the setting of the many frustrations associated with hospitalization, patients also described grappling with profound uncertainty. Patients described not knowing their doctors, not being asked for their consent to procedures, and not knowing their treatment plans. Many patients also felt powerless to share their frustrations with healthcare providers.
“It’s difficult…. We do not have powers to speak or tell them [the doctors] what to do…. We have just been receiving treatment without being told what the medication is going to do in our bodies…. They just come, call names and give us treatment. So, you can’t ask anything.” – Male, age 25–29
Patients expressed deference to the doctor and often did not expect to participate in the choice of treatment.
“The patient is not supposed to tell the doctor what to do. The doctors know everything.” – Male, age 55–59
Some patients expressed an outright fear that questioning their providers or sharing their frustrations might negatively impact their care.
“It may risk my life…. I can’t speak [about my difficulties with treatment], or they will hate me more and stop treatment.” – Male, age 18–24
Preference for Surgery
Drawing from their own experiences, experiences of family members and friends, or observations of other patients on the wards around them, patients described a strong preference for surgery over skin or skeletal traction. Many felt that surgery would lead to a better outcome and quicker return to home or work.
“When patients are operated on, they walk upright and go home to continue working.” – Male, age 55–59
In contrast, patients receiving skin and skeletal traction described the pain and frustration of the prolonged treatment method.
“The treatment [skeletal traction] is not effective. I want to go home. This is more painful than surgery itself. It’s not helping because I can’t sleep. I am always in pain… I’m always crying. I’m not happy…because I’m not healed.” – Female, age 60–64
This seemed to contribute to patients’ frustration with limited availability and long delays in receiving surgery.
“I was told…that I would go for surgery. It’s now been 7 months without any surgery. They told me that there are a lot of people waiting for surgery. [If I had had surgery] I could have been using maybe only one crutch by now.” – Female, age 20–24
Frustration with Inequitable Provision of Surgery
Many patients perceived that surgery was not available to all patients and suspected that favoritism or corruption was allowing richer patients to get surgery sooner.
“Some [patients] are well known and well-to-do people that can’t be in hospital long…[I feel] very pathetic because we are poor, that’s why we are still in this state [waiting for surgery].” – Male, age 25–29
“There must be something happening in secret since the hospital services are [supposed to be] free…. You can be on the [operating] theatre list and then you get sent back [to the wards]. It must be that someone has their own pocket theatre list. Why have we been put on hold for so long? …I believe there’s underground corruption happening.” – Male, age 40–44
Acceptance, Resignation, and Resilience
Recognizing the severity of their injury and the need for formal medical care, several patients demonstrated a sense of acceptance, and a feeling as if they had nowhere else to go.
“This is how it’s supposed to go. I have to follow…. I can’t go anywhere else to get treatment. This is the only place to get treatment.” – Male, age 30–34
Many patients continued to show resilience in the face of tremendous hardship, frustration, and uncertainty. Even patients who described the frustrations of prolonged hospitalization also demonstrated gratitude to be in the hospital, and confidence in their providers’ abilities to heal them. They described drawing their strength to persevere from their families and from God.
“I pray to God a lot. I pray for God to give my doctor strength and ideas to operate on me.” – Male, age 50–54
Moreover, despite the many challenges they faced, some patients remained optimistic. This optimism seemed to be rooted in the belief that they would eventually receive surgery and return to their lives and families.
“I’m expecting that I will get a better treatment [surgery] and I will be ok. I am expecting that things will change.” – Female, age 60–64