DIABETICMedicine

DOI: 10.1111/dme.14157

PSAD Special Issue Paper

Twenty-five years of diabetes distress research

T. C. Skinner1,2 , L. Joensen2 and T. Parkin3

1
Department of Psychology, University of Copenhagen, Copenhagen, 2Steno Diabetes Centre Copenhagen, Gentofte, Denmark and 3School of Health
Professions, University of Plymouth, Plymouth, UK

Accepted 18 October 2019

Abstract
The term ‘diabetes distress’ first entered the psychosocial research vernacular in 1995, and refers to ‘the negative
emotional or affective experience resulting from the challenge of living with the demands of diabetes’. At first the
proponents of the concept were hesitant in advocating that diabetes distress was a major barrier to individuals’ self-care
and management of diabetes. Since then, a burgeoning body of evidence, now including several systematic reviews of
intervention studies, suggests that diabetes distress, in both type 1 and type 2 diabetes, across ages and in all countries
and cultures where it has been studied, is common and can be a barrier to optimal emotional well-being, self-care and
management of diabetes. As a consequence, monitoring diabetes distress as part of routine clinical care is part of many
national guidelines. The present narrative review summarizes this research and related literature, to postulate the
aetiology of diabetes distress, and thus how it may be prevented. The current evidence base for the management of
diabetes distress is summarized, and the next steps in the prevention and management of diabetes distress identified.

Diabet. Med. 37, 393–400 (2020)

What is diabetes distress? distress have direct physiological impacts (e.g. increasing
adrenaline, cortisol) similar to that of stress? The authors
Diabetes distress is a term first proposed in the peer-reviewed
concluded that whilst diabetes distress was common and
literature by a group of psychologists and psychiatrists from
had a statistically significantly association with glycaemic
the Joslin Diabetes Centre in 1995 [1]. They identified
control, ‘diabetes-related emotional distress appears to be
diabetes distress as a concept that encapsulated the psy-
of little clinical importance in the determination of future
chosocial adjustment challenges faced by people with
glycemic control, at least at 1 year. Indeed, given the large
diabetes. Diabetes distress refers specifically to the negative
n in this sample, it seems likely that the observed associ-
emotional or affective experience resulting from the chal-
ation is merely a statistical artifact’ [1]. So. when the
lenge of living with the demands of diabetes, regardless of the
Psychosocial Aspects of Diabetes (PSAD) study group of
type of diabetes. Thus, diabetes distress is a multi-faceted
the European Association for the Study of Diabetes was
construct, with different aspects of diabetes management. In
formed, we had data from early studies to indicate that
that first paper directed specifically at assessing emotional
many people with diabetes experienced a range of negative
distress, the authors reported that ‘Diabetes-related emo-
emotions as a result of living with diabetes, but their
tional distress appears to be common, with serious concerns
impact on the management of diabetes and people’s quality
being reported for at least one [Problem Area in Diabetes]
of life was unclear.
PAID item in 60% of the study sample.’ The authors further
It is important to be clear that diabetes distress is distinct
reported that diabetes distress was associated with self-care
from depression and general emotional well-being [2,3].
behaviour, and predicted HbA1c at 1 year follow-up, after
Diabetes distress is anchored in the day-to-day experience of
controlling for baseline HbA1c and demographic character-
living with diabetes, whereas depression is the generic feeling
istics. This finding raised an ongoing issue in this area as to
of depressed affect, which is not linked to a specific condition
whether diabetes distress impacts blood glucose regulation
or experience. When studies measure both depression and
through behavioural and or physiological pathways; that is,
distress, it is common for these measures to be significantly
does distress impact on metabolic outcomes through its
correlated (20–30% shared variance). If we explore this
impact on self-care behaviour, or does the experience of
association, using clinical thresholds for depression and
distress, we would expect to see that many people reporting
Correspondence to: Timothy C. Skinner. Email: ts@psy.ku.dk
symptoms of depression do not report clinically elevated

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What’s new?
• Diabetes distress is common among people with type 1
and type 2 diabetes, and is associated with lower levels
of self-care, general emotional well-being and possibly
metabolic outcomes of diabetes care.
• Whilst there has been a wealth of research on diabetes
distress, we have limited data to show that distress is
associated with the development of long-term compli-
cations of diabetes, and we have little insight into how
diabetes distress develops.
• There is emerging evidence that the way healthcare
professionals communicate with people with diabetes
may be exacerbating the distress experienced by people
with diabetes, or possibly contributing to its develop-
ment.
• Healthcare professionals need to ensure that the way
they communicate with people who have diabetes does
not add to the distress that diabetes engenders.
• We need to embed the assessment and management of
diabetes distress into the routine diabetes care services
we offer people with diabetes.
distress, whilst others do. This leaves us with four groups of
individuals (Fig. 1): those reporting high levels of depressive
symptomology (possibly depressed); those reporting high
levels of diabetes distress (distressed); those reporting few
negative emotional affects (fine); and those reporting
both high levels of distress and depressive symptomology
(depressed-distressed) [2]. This suggests that the elevated
rates of depression we see reported in diabetes may in fact
represent a persistent, pervasive negative emotional impact
of diabetes that it is resulting in a more generalized negative
affect.
Distressed Distressed Depressed
20–30% 5–15%
None to Low Levels Depressed
Distress/Depression 5–10%
50–70%
FIGURE 1 Estimated distribution of prevalence of depression and
distress in people with diabetes. Estimates derived from meta-analysis,
systematic reviews, narrative reviews and empirical studies of self-
reported instruments, for distress and depression [2,5,7,15,28,30,31].
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25 years of diabetes distress research  T. C. Skinner et al.
Prevalence of diabetes distress
The validation of the PAID scale, which was the focus of the
first paper on diabetes distress, enabled research on diabetes
distress to flourish. Researchers went on to further demon-
strate the reliability, validity and sensitivity of the PAID scale
in English and several other languages. This burgeoning
literature, along with the development of other measures of
diabetes distress, as a separate tool or as part of more
comprehensive measures (see ‘Identification of diabetes
distress’ section) [4,5], has enabled a synthesis of this
research. In 2017, it was reported in a meta-analysis that
~36% of people with type 2 diabetes experience significant
diabetes distress [6]. Whilst there is no published meta-
analysis, it is estimated that ~20–40% of people with type 1
diabetes experience elevated or severe diabetes distress [4,7].
The prevalence of diabetes distress varies greatly across
different populations of people with diabetes. A meta-analysis
of diabetes distress in people with type 2 diabetes demon-
strated significant associations between higher distress and
female gender [6]. This association has also been found in
people with type 1 diabetes [8]. Furthermore, other studies
have highlighted that younger people and people with shorter
diabetes duration more often experience diabetes distress than
older people and people with longer diabetes duration, both in
people with type 1 and those with type 2 diabetes [4,8]. Lack of
social network and social support, such as living without a
partner and perceived lack of help from people in one’s
network, has been found to be associated with higher diabetes
distress [4,9]. Furthermore, studies have highlighted an asso-
ciation between higher distress and ethnicity, with non-white
people and ethnic minority groups having a higher prevalence
of diabetes distress than white people and non-minority groups
[4,10]. This highlights that there are specific subgroups, such
as younger people and people with fewer resources, that need
special attention and are at higher risk of developing diabetes
distress. Furthermore, the time around and after diagnosis is a
time of high risk of diabetes distress.
The prevalence of diabetes distress also varies in terms of
the sources of distress. The first study mapping diabetes
distress showed that worries about future complications is
the most commonly endorsed item [1], and other studies have
consistently replicated this finding. Studies indicate that in
type 1 diabetes the most common distress relates to emotions
such as feeling powerless and burnt out, fears of hypogly-
caemia and worries about the future and that in type 2
diabetes the most common distress may be related to
managing diabetes [7,11].
Diabetes distress, self-care and metabolic
outcomes
The extensive literature documenting the high levels of
diabetes distress experienced by people with diabetes takes us
back to the question asked in the original paper: what is the
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clinical significance of the distress for people with diabetes?
Whilst negative emotions are often considered aversive in
their own right, their role in determining an individual’s
diabetes self-management is not always immediately obvi-
ous. Many psychological models that seek to predict or
change health behaviour postulate that increasing the seri-
ousness, susceptibility or perceived threat of an illness
increases the motivation to act. Thus, the distress that relates
to worry about future complications could be thought to
increase self-care. It also might be hypothesized that being
concerned about food and eating, and feeling guilty when not
following self-care recommendations would also be associ-
ated with increased motivation to follow diabetes care. In
contrast, feeling alone and unsupported, and burnt out with
the effort of diabetes management would clearly be antici-
pated to be associated with reduced self-care. These possible
contradictory roles of diabetes distress may explain the initial
conclusions about the weak association with metabolic
outcomes. Since 1995, however, one of the most consistent
effects seen in the literature is that diabetes distress is
consistently associated with lower levels of self-care. Further,
meta-analyses of diabetes distress report reductions in
diabetes distress and HbA1c [12], and thus point to a modest
association with higher HbA1c values. This substantially
weaker association with blood glucose measures is likely to
be a function of several factors. First, much of the effect of
diabetes distress on HbA1c is likely to be mediated by self-
care behaviours. So even when diabetes distress is reduced,
say by attending a psycho-education programme, then the
effect on HbA1c will be mediated by self-care capability.
Thus, even if someone has low distress, if they do not have
the knowledge, competence, confidence and support to enact
effective self-care, their HbA1c values are likely to show little
impact. This is, of course, also assuming that individuals are
being prescribed the correct treatment regimen to optimize
their HbA1c, which we know for many people with type 2
diabetes is not the case [13].
There are as yet few data to show that diabetes distress is a
predictor of the development of complications or mortality
because of the lack of longitudinal cohort studies that have
included diabetes distress. For distress relating to the worries
and concerns about future complications, the negative
association with self-care and metabolic outcomes is consis-
tent with the literature from the general psychology litera-
ture. The literature also indicates that perceptions that
conditions are very serious, especially when coupled with a
low belief in self-agency to affect the course of a condition,
are associated with reduced self-care behaviour. We cannot
as yet clarify the mechanism by which diabetes distress
impacts on diabetes outcomes, but it is thought to be through
the physiological processes associated with stress and our
choices relating to how we manage emotional distress. In
reality it is likely that both processes are in action, all be it
differing in relative impact between individuals. However, it
would seem that Polonsky et al. [1] were overly cautious in
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DIABETICMedicine
questioning the effect of diabetes distress, stating that it may
have been a statistical artefact in their 1995 paper. Diabetes
distress does have a consistent, clinically and statistically
significant impact on diabetes outcomes [7].
Aetiology of diabetes distress
Whilst there is an abundance of literature on diabetes distress
and its association with self-care, quality of life and
metabolic measures of diabetes regulation [2,3,5,7,14,15],
there are still remarkably few data on its aetiology and
development. This is a function of the lack of prospective
cohort studies following people with diabetes from diagnosis,
focused on psychosocial issues. One trial of a self-manage-
ment education programme for individuals newly diagnosed
with type 2 diabetes, indicates that distress begins to emerge
relatively soon after diagnosis. A moderately serious problem
for them, 60% of 600 individuals with type 2 diabetes
reported at least one negative emotional aspect of diabetes
that was a moderately greater problem for them [16].
When we think about the aetiology of diabetes distress,
however, it is worth considering that there might be two
components to this. The first is that diabetes distress arises
from having diabetes. The reality of the demands and
prospects of a life with diabetes are undoubtedly contributing
to the distress people feel, but we should also consider to
what extent we healthcare professionals, as well as the social
context in which people with diabetes live, contribute to the
distress people experience.
Poor communication within the consultation has been
consistently linked to diabetes distress, poorer metabolic
outcomes and low levels of self-management in people with
type 2 diabetes [17]. Peoples’ perceptions of poor commu-
nication highlight that inattention from physicians results in
missed opportunities to address the concerns of people with
diabetes, as well as lack of engagement to explore what is
required to increase confidence in self-care management
[17,18]. Studies using video recordings of consultations show
that professional inattentiveness and missed opportunities
resulted in repetition of information that lacked relevance or
was out of context, with a tendency towards biomedical
explanations [19], and also resulted in limited discussions
about the burden of treatment of diabetes and few oppor-
tunities for problem-solving [20]. This is similar to findings in
recordings of nurse consultations where discussions about
health behaviours were noted, but elements of self-manage-
ment, goal-setting and barriers to change were found to be
lacking in over half of the 66 recordings [21]. Similar
perceptions of being ignored, and previous experiences of
living with diabetes being disregarded, were also found in
people with type 1 diabetes [22]. Thus, through failing to
attend to, acknowledge and validate people’s distress,
healthcare professionals are, at best, not helping. In addition,
providing information, advice and instruction that does not
respond to and meet the individuals’ needs is likely to be
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contributing to greater distress. Added to this, health
professional recall of consultations is often inaccurate and
“If these incorrectly recalled decisions are recorded in patient
notes, this may lead to patients being inappropriately berated
at follow-up appointments for not ‘complying’ with these
decisions” [23].
Furthermore, many health professionals attempt to use the
threat of impending complications, or the need to use insulin
in those with type 2 diabetes, as a means to try and motivate
self-care. When individuals do not feel able to follow the
advice, recommendations or instructions given, this is likely
to increase distress rather than motivate action. Survey data
of physicians across eight countries suggests that misunder-
standing of people’s perceived seriousness of their condition
and their perceived distress resulted in missed opportunities
to focus discussions on areas that would help build individ-
uals confidence in self-management, and the scale of these
data suggests that misunderstanding is a common issue [18].
This is an important consideration as low confidence affects
people’s perceived levels of support and trust, adding to the
emotional burden of diabetes, and has long been associated
with poor self-care [24], contributing to increased levels of
diabetes distress [17,25,26]. Perceptions of blame from the
professional may worsen the patient–provider relationship
further [25], with non-supportive professional relationships
that discourage engagement [26] acting as a stressor to
effective diabetes care [27], contributing to patient reluctance
to discuss self-care behaviours with providers [28].
Professionals may exacerbate the communication further
by limiting patient control because of their perceptions of
professional responsibility and their inability to ‘let go’ of
controlling the agenda of the consultation [25]. This pater-
nalistic approach to care acts as a barrier to self-care
management, removing choice and responsibility from the
patient. The resultant reduction in patient autonomy,
patient-centred care and engagement within the consultation
will add to patient’s distress as individuals lack a voice to
validate their experiences of living with diabetes, in addition
to having limited opportunities to explore how they can best
engage with their diabetes management in the long term.
This is clearly an area of research we need to invest in. It
would be far better to prevent the development of diabetes
distress, than to wait for it, and then try to manage it. Thus it
would seem that investigating how distress develops, through
prospective longitudinal, quantitative and qualitative studies,
should be a research priority.
Identification of diabetes distress
It is important to be able to identify diabetes distress and
support people in need. One of the major developments in
recent years regarding diabetes distress is the increasing
recognition that it should be assessed as part of routine
diabetes care. National and international guidelines increas-
ingly recognize the importance of annual screening for
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25 years of diabetes distress research  T. C. Skinner et al.
diabetes distress in people with type 1 and type 2 diabetes
[29,30]. To this end, the literature is fairly consistent in
recommending two measures for this purpose: the original
PAID scale and the Diabetes Distress Scale (DDS). Two
papers have compared these instruments, and both have
concluded that the DDS and PAID are psychometrically
sound, reliable and valid instruments [31,32]. Both tools
have been used extensively in the literature, have been
validated in a large number of languages, and are available in
short forms and have validated versions for teens with
diabetes. The PAID scale also has a version for children and
parents of children with diabetes, whilst the DDS has a
measure for partners of adults with type 1 diabetes. The DDS
has separate versions for type 2 and type 1 diabetes, whereas
the PAID scale was developed in a mixed cohort, and
continues to be used in both type 1 and type 2 diabetes. This
means that clinicians can use just one tool in their practice
when using PAID, while the T1-DDS highlights specific
causes of distress in people with type 1 diabetes that are
relevant and useful in the clinical dialogue. The other main
distinction between the two is that the PAID scale has not
been found to have a robust factor structure, whereas the
DDS is reported to have distinct factors, which may aid
clinicians in identifying the primary cause of distress
[5,31,32]. In essence, there is no clear empirical, theoretical
or psychometric rationale for choosing one questionnaire
over the other, at present. Given that we can assess and
identify diabetes distress with a reasonable degree of confi-
dence, the challenge is how to respond, when we identify it,
in clinical practice.
Management of distress: individual
interactions
The first part of addressing diabetes distress occurs in the 1:1
interactions with a diabetes care provider. People’s percep-
tions of good communication and positive relationships with
providers are associated with reduced diabetes distress,
improved outcomes, higher levels of self-care and higher
confidence in following recommendations [17,33]. Global
studies indicate that good communication is reflected in
greater use of collaborative and encouraging conversation
elements [17,26,33]. Patients define collaborative care as
listening and learning from each other, sharing ideas,
agreeing on measurable goals and support with goal
achievements [18,34]. These are behaviours that have been
commonly identified as important for delivering patient-
centred care [35,36]. In addition, patients who perceive more
positive relationships with providers, generally report higher
levels of self-care and have higher confidence in their ability
to follow recommendations [37].
Professional attitudes can shape these positive relation-
ships, with higher respect for patients resulting in more
rapport building, social exchange and positive talk [38], as
well as increasing confidence [17] and supporting patients’
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ability to complete daily activities [39]. Being more auton-
omy-supportive, by using person-centred approaches such as
motivational interviewing [40], is associated with increased
perceived competence and reduced diabetes distress [41].
Motivational interviewing and empowerment are common
collaborative supportive approaches used in diabetes care to
promote patient autonomy and increase motivation and
confidence. They use a similar set of core skills (reflection,
summarizing, open questioning and affirmation) to support
collaborative engagement and motivation [42].
Provision of emotional support is crucial to this process
[17] and is facilitated through listening to patients and
acknowledging their experiences of living with diabetes
[43]. Indeed, patients have clearly indicated that they want
their experiences of stress acknowledged and validated by
professionals [43,44]. Empathy therefore has an important
role to play in communicating successfully with patients.
Behavioural empathy can be demonstrated through
acknowledgement and pursuit (exploration and problem-
solving of perceived barriers), as well as acknowledging and
affirming success [45]. Empathy is also associated with
higher patient self-efficacy, autonomy and agreement on
recall of decisions made in the consultation [45,46].
Responding to and recognizing emotional issues may help
to gain patient trust [25], while reflections used during
empathic exchanges contribute to patients’ perceptions of
autonomy support [46]. Enhancing emotional support
(through effective listening and responding) is therefore a
useful strategy for professionals to employ to help reduce
the burden of diabetes distress [17] and encourage better
patient self-care.
Data from the Diabetes Attitudes Wishes and Needs 2
study surveying 4785 healthcare professionals across 17
countries, however, indicate that discussion of emotional
issues with patients tends to be limited [47]. Surveyed
professionals indicate that they would like further training
and support to help them manage the emotional and
psychosocial aspects of diabetes care [47]. A recent trail
comparing a complex psychological intervention with an arm
where patients were listened to, acknowledged and allowed
to talk about their experiences, produced similar results [43].
Attentive listening may therefore be just as therapeutic as a
complex intervention.
The recent practical review by Fisher et al. [11] provides
further guidance on attentive communication behaviours
that professionals could use to reduce diabetes distress. These
are similar to strategies used in motivational interviewing,
empowerment and empathic listening, and consist of the
following: active exploration, acknowledgement and label-
ling of feelings, summarizing and reflecting, normalizing
feelings, presenting ambivalence through the use of double-
sided reflections, helping people gain a new perspective,
developing a plan and follow-up [11].
As with all behavioural interventions, follow-up allows
time for reflection and review. Diabetes is an ongoing event
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DIABETICMedicine
and life circumstances will change, including perceived
ability to cope, which will impact on patients perceived
levels of diabetes distress at any one time. In addition,
patients report wanting follow-up and behavioural support
for goals achieved, they value some accountability to
professionals who are interested in their progress and can
help them with problem-solving regarding their concerns
[44]. In fact, retrospective data suggest that supporting
people with reassurance at diagnosis, along with clear action
plans, resulted in better self-care 1–5 years after diagnosis, as
well as less diabetes distress [48].
Good patient–provider communication therefore enables a
trusting, collaborative and supportive relationship to be
developed. Being attentive, listening to patients’ needs,
providing opportunities to share the emotional challenges of
living with diabetes, and responding empathically will allow
provision of relevant information that supports patients’
opportunities for understanding, and problem-solving.
There are limited data measuring observed communication
behaviours between patient and providers in the consultation
and its impact on diabetes distress [19,20]. This is an
important consideration as perceived skill use and actual
delivery can vary considerably, contributing to variations
seen in clinical outcomes [49]. This is highlighted in a recent
systematic review by Frost et al. [49], which explored
reviews of motivational interviewing on health behaviour
in adults. This included 30 reviews, seven of which specif-
ically focused on the management of diabetes. They con-
cluded that there was inconsistent evidence to support the
use of motivational interviewing. Reported studies were
either inconclusive, or of low quality; a key issue was the lack
of specification of training and fidelity testing [49]. Although
not unique to motivational interviewing interventions, with-
out clear information on the training of specific skills and
their maintenance within the study period, there is no
guarantee that the required communication skills or beha-
viours are being applied appropriately.
What we say and how we say it has a crucial impact on
care delivery, affecting patients’ perceptions and self-care,
long-term outcomes and diabetes distress. The literature
provides some guidance on simple communication skills that
may help to support this process [11], however, training,
fidelity and feasibility testing is required to explore how these
skills can be applied consistently before we can assess the
true impact of the use of these skills on predicted improve-
ments in levels of diabetes distress.
Management of diabetes distress: group
interventions to reduce distress
Although addressing the emotional side of diabetes is
acknowledged as highly important, few interventions are
designed specifically to reduce diabetes distress. Furthermore,
although studies have explored the effect of specific inter-
ventions on diabetes distress, research is lacking about how
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diabetes distress interventions aimed at reducing diabetes
distress are implemented in practice.
A recent systematic review and meta-analysis of psycholog-
ical interventions, with diabetes distress as the primary
outcome, demonstrated that diabetes-tailored psychological
interventions are effective in reducing severe diabetes distress,
with thresholds of distress for PAID-5 being ≥ 8, for PAID-20
≥ 40 and for DDS-17 ≥ 3 [12]. However, only nine studies
fulfilled the inclusion criteria (randomized controlled trials
with focus on diabetes distress reduction). Of these interven-
tions, six were group interventions. Another meta-analysis
from 2015 by Sturt et al. [7] of 41 randomized controlled trials
that included diabetes distress as an outcome measure found
that the interventions that were most effective at decreasing
diabetes distress directly were psycho-educational and tar-
geted the emotional aspects of diabetes, rather than focusing
exclusively on behaviour change or education. It also seems
that diabetes distress is best reduced when both diabetes and
emotions are addressed, as psycho-educational interventions
were also more effective compared to psychological interven-
tions [14]. The meta-analysis also concluded that interventions
delivered by a generalist (rather than a diabetes specialist) that
had more than six sessions and lasted more than 13 weeks had
the greatest impact on diabetes distress. The authors hypoth-
esize that the significance of a generalist may be an indicator of
the continuity and access that are offered by primary care and
the fact that the analyses predominantly include type 2
diabetes studies. The meta-analysis showed that delivering
the support in groups vs individual support did not influence
the impact on diabetes distress; however, a newly published
randomized controlled trial, specifically aimed at reducing
diabetes distress in people with type 1 diabetes, demonstrated
that both an emotion-focused intervention and an educa-
tional–behavioural intervention both led to the same dramatic
3-month reductions in diabetes distress that were sustained
after 9 months [50]. The authors argue that it may be the
reassurance and support gained from sharing of self-
management tips and experiences with peers that dramatically
reduced diabetes distress with both approaches [50]. An
update of the review by Sturt et al. focused on effective
interventions for reducing diabetes distress in type 1 diabetes,
included 17 studies and showed that the most common feature
of effective interventions was the group format [7]. People with
type 1 diabetes may especially benefit from meeting in groups
with peers, as they often do not meet others with the disease.
Studies have shown that peer support among adults with type 1
diabetes both legitimizes and relieves a shared and burden-
some feeling of diabetes loneliness [51]. Also, peer support is a
way of enhancing the establishment and strength of diabetes-
specific social capital, i.e. peer support fosters social support
between individuals (giving and receiving social support) and
creates space for genuine trust and a feeling of communality
[51]. Meeting in groups can provide emotional support and
reduce distress both by sharing emotions and feeling normalcy,
and also through sharing diabetes experiences and tips and
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25 years of diabetes distress research  T. C. Skinner et al.
tricks [7,51]. Other features of interventions that can be used
in group support and have been shown to reduce diabetes
distress are goal-setting, problem-solving, reflection, motiva-
tional focus, supportive listening, addressing emotional chal-
lenges, improving emotion regulation skills, and mindfulness-
based stress reduction/cognitive therapy [7,12,50].
Looking to the future
Whilst there is much we do not understand yet about
diabetes distress, there are several urgent and key questions
we need to address, some of which have already been raised.
Arguably the most urgent is providing guidance on what to
do when an individual reports high levels of distress and high
levels of depressive symptomatology. In this scenario, we do
not know as yet if this represents the generalized depression
driving a negative emotional engagement with diabetes, or
the pervasive negative emotional experience of diabetes
driving generalized affect. It is important to understand this
distinction if we are to provide appropriate care to people
with diabetes. Thus, clinically, it is important that healthcare
professionals conduct full mental health assessments if an
individual reports significant depressive symptomatology.
Next, it is important to recognize that much of the distress
that people with diabetes experience is a function of their
interactions with their social world, whether it is their friends
and family, the wider social media or their diabetes care
provider. These negative interactions clearly impact, exacer-
bate and possibly cause some aspects of diabetes distress, and
raise the question of how can we prevent this. A number of
national guidelines have recently highlighted the importance
of our language in shaping the negative experience of people
with diabetes. However, we have little insight into how to
positively impact the social experience of people with
diabetes, and this would seem critically important to reduce
the negative impact of diabetes.
Last, we have some nascent evidence about what compo-
nents of a psycho-educational programme may be effective in
reducing diabetes distress. What we do not know is how to
equip healthcare professionals delivering self-management or
psycho-educational programmes with the skills and compe-
tencies to imbed these strategies, techniques and tools into
programmes that can be delivered as an integral part of
diabetes care. There are never going to be enough psychol-
ogists working in diabetes care to meet the need for these
psychologically informed programmes. We therefore need to
consider how best to equip healthcare professionals with the
competencies needed to address diabetes distress in routine
practice and explore the use of digital technologies to deliver
these programmes.
Conclusion
Since the formation of the PSAD study group, diabetes
distress has gone from being a new concept, with
ª 2019 Diabetes UK

PSAD Special Issue Paper
questionable importance, to being recognized as one of the
most common and important psychosocial barriers to
effective diabetes care. The tools to assess diabetes distress
have been developed and guidelines advocate its routine
assessment. We have a nascent evidence base that psycho-
educational programmes can reduce distress. Now, our
challenge is how to embed this learning into routine care
for people with diabetes.
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