Exploring SDM in HIV nursing care
capacity whether they understand, they appreciate what is going on and they want to
cooperate with you.'(Nurse2,FocusGroup3)
Insituationswherepatientshadmentalhealthorsocialproblems,HIVwassometimesnotapriority
foranindividual,leadingtopooradherence,riskybehaviourormissedappointments:
`It is my experience as well, because partly the demographics I see more of that kind of
patient group who really struggle with many other issues in their lives that HIV and erm
ceases to be a priority and they feel it is just like an encumbrance, kind of, and then,
I don't know, maybe partly as wel because sometimes it is, people are coming from
difficult circumstances.'(Nurse2,FocusGroup3)
Althoughanumberofnursesexpressedtheirfrustrationintryingtoengagewith,andsupport,such
patients,theynotedthattheynonethelesstriedtoadoptapatient-centredapproachtocare:
`You take every individual that walks through the door, they walk through with whatever
they walk through with. Hang ups, no hang ups ... issues, no issues, you just, you just go
with wherever they're at don't you? Yeah, absolutely ... and it doesn't matter whether its
alcohol that's their problem or whether its em, life style or whether it's just their childhood
or their personality. It doesn't matter what it is that might be a barrier to good healthcare
you just deal with whatever comes up.'(Nurse2,FocusGroup1)
Otherpatient-relatedfactorsincludedreligiousviewsandbeliefsthatsuggestedpathstohealing
thatwerecontrarytomedicaladvice.Inthesesituations,nursesdiscussedhowtheytriedtoaccept
andrespectpatients'choices:
`I mean you see it a lot with people who have got very strong religious beliefs don't you?
You know they can ... it can be very challenging to help look after them in a way that is
conducive to good health but that is part of their decision isn't it? And that you know if
they think that God is going to kill them or heal them, then we have to work with them
and not against that and we have to follow a bit of a journey until they reach a place that
they feel either they are going to carry on with that and not take medicines or they are
going to take medicines.'(Nurse4,FocusGroup4)
However,nursesalsodescribedfeelingfrustratedoruncomfortablewithsomeofthechoicesand
behaviourofpatients,especial ywhenpatientswereseentobetakingrisksormakingpooror
uninformedchoiceswithregardtotheircare:
`... the other thing is the essence of why we went in to the profession which we went in
to, why we went in to nursing? You were challenged by that patient who says I choose
not to get well, I choose to die, I choose not to take the medication. For me that is where
the discomfort I think emanates from ... But then how do we allow, how do we get over
our own feelings of being like to borrow the word paternalistic and say you have to do
this, you have ... it is a difficult kind of area because we went in to nursing to make people
better, to try and help them whether it is by personal care, doing the injections ... and
then now you're being chal enged by the person's decision to say actual y I am not going
to have this.'(Nurse2,FocusGroup3)
Thetopicof`avoidabledeath'wassomethingthatcameupineachofthefocusgroupdiscussions
asoneofthemostchallengingissuestoaddresswithinanSDMapproach.Thenursesreflected
2016
atlengthabouttheevolutionofHIVtreatmentanditstransformationintoamanageablelong-term
condition.Thereby,whenpatientsdecidednottoengageintreatmentorHIVcare,thenursessaw
thisasunnecessarilymakingthedecisiontodie:
`They stop taking their tablets and then that can be quite a chal enge for health
professionals who are thinking you're going to die without these and yet ultimately the
person feels they can't do it and we're thinking look it is simple, just put them in your
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