While the language of patients “defaulting” or “disengaging”
implies that patients choose not to attend, the researchers found that the
origins of missed visits were usually unintentional.
Interviewees had to deal with competing demands on their
time. When demands stemmed from cultural and family obligations, or economic
requirements, they sometimes took precedence over keeping clinic appointments.
An individual could be required to travel for work, attend a relative’s funeral
or care for a sick family member in a distant location. Moreover, plans were
often complicated by unexpected events, as this interview quote illustrates.
“What caused me not to
come to the clinic was that I lost my father. When he died, I went to [name of
town] for the burial and the money that I had taken with me ran out. And so I
had to first stay there to make some more to facilitate my return. When I was
able to return to my home, I failed to get the money for transport to the
hospital and so I started working to be able to earn the amount enough to
facilitate my transport fare.”
Other unintentional reasons included misunderstandings about
visit dates and forgotten appointments.
But some missed visits were intentional, often motivated by
dissatisfaction with care. For example, some interviewees objected to long
waiting times and restrictions on the dates and times when they could attend.
Moreover, a number of participants complained of “harsh
treatment” by healthcare providers. This referred to staff who were perceived
to be rude, rejecting, lacking in compassion, or who used “bad language”. Such
experiences left patients feeling hurt, angry and humiliated.
“The first day I came, I didn't know I had to
drop my card—hand card—by the door. So I came in and sat down where my friend
said. The nurse there was so harsh that I didn't drop my card. She said all
nasty things to me and at a point I said, ‘Amen! Let me just go.’ That was the
first day; that was the first experience. I felt it was not a place to be. It
was like I should just leave the hospital immediately.”
“Like my last clinic visit,
it became too much. They really looked like they didn't care… Sometimes when
you enter the doctor's room, they start conversing and talking about their own
things while you just sit there and wait for them to finish.”
Absences were not usually the result of a single “reason”, but the product of a complex chain of events
The researchers report that prolonged absences were not
usually the result of a single “reason”, but the product of a complex chain of
events, which need to be examined together. For example, there may be more to
“transport problems” than initially meets the eye. Take the case of this man
who had not attended for two years.
“We fail to get
vehicles sometimes. And when you go to look for money for [a motorcycle taxi]
you find you do not have it. So when you miss your appointment and go to clinic
on another day, [the provider] starts quarreling with you about not having come
on the appointed day. And when you tell that person you got problems, he tells
you, “You should spend the night on the road.” How can I spend the night on the
road? Here I am, having failed to get money for taking me to the hospital and
then I'm supposed to get money to spend the night somewhere and feed myself?
These are some of the problems I have in going to the clinic.”
The authors say that the man stopped attending, not really
because of transport difficulties, but due to the staff’s lack of understanding
Circumstances often change, and initial problems – such as money
shortages or competing obligations – cease to be an obstacle to attendance. But
many patients were nervous about difficult interactions with staff, should they
attempt to resume treatment after an absence. Interviewees were afraid of being
“abused”, “yelled at” and “chased from the clinic”.
“I was scared of
coming back and them telling me that they will not accept me because I didn't
come when they told me to. I was wondering whether they would accept me or not
or whether they would scold me.”
Moreover, the interviews suggest that during patient
education about antiretroviral therapy, stern warnings about adherence and a
lifelong commitment to therapy can have unintended, adverse effects.
“When they accept us
and open our files, they tell us this—that when you start, you should not stop.
And if you know you will play with it, then do not start. So it was because I
know I was wrong. That is why I said I will not be able to return.”
According to Norma Ware and colleagues, these accounts point
to the exchange-based relationship between healthcare providers and patients. In
return for access to lifesaving treatment, patients are expected to reciprocate
with adherence to both medication and appointments.
“The commitment entails a moral obligation; missed visits
are thus a moral failing,” she writes. The moral aspect makes sense of
patients’ shame and the “scolding” of staff.
Overall, the findings suggest a process in which
“unintentional and intentional missed visits evolve into a weakened sense of
connectedness, reluctance to return, and, ultimately, disengagement from care”.
The authors recommend that clinicians need to address the
reasons patients are reluctant to return and minimise the barriers to
re-engaging with care, as well as prevent missed visits in the first place.