Stigma, as an elusive concept, can seem to be hard to
measure, but there are several validated questionnaires that have been devised
to measure it, such as Seth Kalichman’s seven-item questionnaire (see
reference). One interesting finding is that self-stigma and depression scores
are not closely correlated; this may be because while depression and anxiety
questionnaires may prompt people to think of “worst moments” of psychological
distress, self-stigma scales may, as we said in the HTU piece, may capture “something colder and less volatile: people’s
considered verdict on themselves as a human being”.
In most cases the original researchers, or the reviewers,
were able to calculate ‘effect sizes’, which are measures of how much the
findings deviate from a neutral effect. These are the same as Z-scores: zero means that the result
is precisely in line with the norm; a Z-score below minus one means that the
result falls within the bottom 16% of results; below minus two indicates being
in the bottom 2.5% of results.
In four studies, the stigma reduction observed translated
into a Z-score of more than minus one. In one, the Z-score reduction was -4.6,
which is a completely off-the-scale effect: essentially, it means that indications
of self-stigma disappeared from most study participants’ questionnaire answers.
This was a study of women with HIV living in rural India, where they were given
ART, health and parenting education, life skills training, clinic travel
expenses and a monthly grain supply. It was one of the smallest studies (34
intervention participants/34 control participants) but the result was statistically significant.
For the purposes of intervention studies, Z-scores can be turned
into percentage reductions in self-stigma scores. Apart from the 99%+ reduction
in the Indian study just mentioned, eight other studies saw reductions in
self-stigma scores of more than 60% and three others of more than 80%. However, it’s
wise to be cautious here: as self-stigma was measured on different scales,
these results might not calibrate across studies. In total, 12 of the 20
studies produced some measurable reduction in self-stigma, while three others reported
self-stigma reductions but did not provide enough information to calculate
effect size.
It’s notable that all five studies that offered ART produced reductions
in self-stigma, though three only produced slight ones. One study that provided
ART alone and no other support found a 72% reduction in self-stigma scores 12 months after starting, along with an increase in quality of life, though it did
find a paradoxical increase in depression.
Four of the 12 studies that report stigma reduction,
published from 2009 to 2017, do not mention ART, though it is not clear if this
is because participants were already on it; another recent study with pregnant
women reported “standard PMTCT [prevention of mother-to-child transmission] care”, which presumably includes ART. One of
these studies, of one-to-one CBT, reports the
second-biggest reduction in self-stigma (97.5%), though this was also the second
smallest study (ten intervention, ten control).
Of the three studies with HIV-negative people, one, which
offered goal-setting, life and economic skills to female sex workers in India,
reported a self-stigma reduction of 85%. The second, with young Thai MSM,
reported a 66% reduction, but this was not quite statistically significant owing
to small study size (37 intervention, 37 control). The third, offering group counselling
and community education to injecting drug users in Vietnam and their immediate
community, had no effect.
The minority of studies that found no effect largely lacked
two crucial ingredients: ART provision, and some kind of structural intervention
that improved people’s social standing – economic support, participation in
activism, or specific life skills. Teaching skills to cope specifically with
stigma had a neutral effect in itself, but contributed to the positive effect of
some studies. Studies that concentrated solely on behaviour change, such as moderating
alcohol use, testing more often, or better ART adherence, tended to have no
effect – possibly because failing to achieve change helps entrench rather than
relieve self-stigma. In connection of this it may be significant that by far
the largest study – a cluster-randomised study of 3295 people in Kenya aimed at
encouraging testing using door-to-door health volunteers – failed to reduce
self-stigma.