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Lepr Rev (2013) 84, 266 282

Combining peer-led self-care interventions for


people affected by leprosy or diabetes in
leprosy-endemic countries. What do health care
professionals think?

WILLEMIJN DE BRUIN*,**, EVELIEN DIJKKAMP*,**,


ERIK POST**,*** & WIM H. VAN BRAKEL*,**,***
*VU University Amsterdam, the Netherlands
**Netherlands Leprosy Relief (NLR), Amsterdam, the Netherlands
***Royal Tropical Institute (KIT), the Netherlands

Accepted for publication 17 December 2013

Summary
Introduction: Leprosy is slowly decreasing in incidence whereas diabetes is a
growing health concern. Despite differences in aetiology, both diseases may lead to
peripheral neuropathy and subsequent injuries and permanent impairments. There are
also indications of similarities in psychosocial consequences. Prevention of Disability
(POD) and self-management are often recommended for both diseases. This led to
the idea of exploring the feasibility of combined peer-led self-care interventions for
people with these disorders.
Objective: To explore the opinions of health care professionals about combining
peer-led self-care interventions for people affected by leprosy or diabetes in leprosy-
endemic countries.
Method: An exploratory study was conducted to collect quantitative data by means
of an e-questionnaire and qualitative data through in-depth semi-structured
interviews with key informants.
Results: In total, 227 respondents answered the e-questionnaire and 22 in-depth
interviews were conducted. Resemblances in physical complications between leprosy
and diabetes were confirmed by the respondents. Psychosocial similarities included
limitations in daily activity and in social participation, but stigma in leprosy was
thought to be an important difference. Considerable overlap in current practices was
found, mainly in patient education in POD, skin assessment and skin care, and the
recommendation to use protective footwear. Knowledge exchange between leprosy
and diabetes specialists is limited, although combined interventions were reported.
The majority of respondents think that combined interventions are possible (333%)
or possible and promising (308%). Professionals working with both diseases are
more positive than those working with leprosy or diabetes only. The greatest barriers
for combined interventions are perceived to be leprosy-related stigma, differences in

Correspondence to: Wim van Brakel, Netherlands Leprosy Relief, Wibautstraat 137k, 1097 DN, Amsterdam,
Netherlands (e-mail: w.v.brakel@leprastichting.nl)

266 0305-7518/13/064053+17 $1.00 q Lepra


Combining peer-led self-care interventions 267

underlying socio-economic status, attitudes of health care professionals and the


current organization of health care systems.
Conclusions: Responses indicate perspectives for combined interventions for the
prevention of disabilities. For this, it is essential to intensify knowledge exchange
between leprosy and diabetes professionals, to overcome barriers and to secure
government policy support. Opportunities should be assessed in a situation-specific way.

Introduction

In 1991, the World Health Organization (WHO) set the target of eliminating leprosy as a
public health problem by the year 2000.1 Although this target was achieved at global level
in 2000, many leprosy-endemic countries still remain,2 mainly clustered in South America,
Sub-Saharan Africa and Asia.3 Because of the nerve damage it causes, leprosy is a disabling
disease. Primary impairments are loss of feeling and muscle weakness mainly in hands, feet
and eyes. Secondary impairments arise when the disease remains untreated or when nerve
damage has become irreversible. These include wounds, chronic ulcers, contractures of
fingers and toes and blindness.4 For people still living with the consequences of leprosy, these
negatively affect activities of daily life and psychosocial well-being.5 7 Leprosy is associated
with negative attitudes and beliefs, which remain difficult to counter,8 often leading to
psychosocial complications and social exclusion.9,10
In the face of the increasing challenge of providing care for people with chronic
conditions, health care systems reforms have led to more emphasis on self-management.11 13
The changes in disease burden and health service delivery has led to a whole system
approach where interaction between all actors is promoted.14 This is depicted in the
Innovative Care for Chronic Conditions (ICCC) framework (Figure 1), which is used as a
conceptual framework for this study.

Figure 1. Innovative Care for Chronic Conditions (ICCC) framework [1].


268 W. de Bruin et al.

The central idea of this framework is that better outcomes will be achieved when a health
care triad is formed. This consists of a partnership between patients and families, health care
teams and community partners.11 The three factors to enable this partnership are information,
motivation and preparedness. The triad as a whole is supported and influenced by the
community and larger health care organisations (meso-level). These meso-level actors are
supported and influenced by national or international policy (macro-level). When the
integration of all actors is optimal, patients and families will be better able to care for their
chronic condition.11
The aim of self-management is to provide people with a given condition with problem-
solving skills to enhance their lives.15 In the case of leprosy, self-care is the most important
type of self-management; the affected people need to change their behaviour to adapt to the
irreversible impairment due to the disease.16 This self-management is implemented in current
prevention of disability (POD) and community-based rehabilitation (CBR) interventions.
In many leprosy-endemic countries, it is implemented through self-care groups (SCGs)
for people affected by leprosy. Research on the effectiveness of such self-management
interventions is scarce, but indicates that participation in a SCG has many advantages such as
an improved physical condition,17,18 a reduction in the number of ulcers,17 19 an increased
understanding about self-care,19,20 better self-care due to peer pressure,20 an exchange of
experiences and solutions,18,20 and increased self-confidence of the affected people.17,18,20
In contrast to leprosy, diabetes is a growing health concern21,22 driven by population-growth,
ageing and changing lifestyles.23 The global prevalence of diabetes among adults (aged 2079
years) was 64% in 2010, affecting 285 million adults, and will increase to 77% (439 million
adults) by 2030.24 Between 2010 and 2030, there will be an estimated 69% increase in numbers
of adults with diabetes in low and middle-income countries and a 20% increase in high-income
countries.24 An important chronic complication of diabetes is peripheral neuropathy. This may
lead to the so-called diabetic foot, often resulting in lower limb amputation.25 The current rate
of amputations is unacceptably high. The overall incidence of lower leg amputation is estimated
to be between 525 per 100,000 inhabitants per year; among people with diabetes the rate is
between 600800 per 100,000 inhabitants per year.26,27
Whereas in the field of leprosy there is a focus on self-care to prevent impairments of feet
and hands, diabetes interventions focus mainly on self-management of blood glucose
maintenance.28,29 Despite the efforts for glycaemic control, many people with diabetes
develop foot complications. Amputations of neuropathic feet with secondary infections are
preventable; this makes diabetic foot care extremely important in reducing the burden of
disease.26 Apart from the physical complications, people with neuropathic symptoms and/or
foot ulcers face restrictions in everyday life activities.30 Furthermore they report problems
with relationships and changes in their self-perception.30 This eventually leads to a decreased
quality of life.30 Recent research has shown that self-management in groups can improve the
psychosocial well-being of people affected by diabetes.31,32
Although leprosy and diabetes are very different in aetiology, the overlap in neuropathic
complications of both diseases is generally recognised,33,34 and the impact in terms of limitations
in daily activity and social participation show some resemblances,30,35,36 although actual research
on this is lacking. Therefore, the first part of this study explored the opinions of health care workers
and professionals regarding similarities and differences between leprosy and diabetes. Also,
current practices for people affected by leprosy and diabetes patients were investigated.
As mentioned, it is evident that the burden of leprosy is slowly decreasing, whereas the
diabetes prevalence is a rapidly increasing.3,22 Whereas many SCGs have been formed for
Combining peer-led self-care interventions 269

people affected by leprosy, literature reports no SCGs specifically for people with diabetes.31
A previous unpublished literature review on current self-care practices in leprosy and
diabetes suggests that SCGs might contribute to better outcomes in both diseases.a
In the WHO Operational Guidelines for leprosy programmes, it is stated that: Persons
affected by leprosy who are in need of rehabilitation should have access to any existing
(general) rehabilitation services. Similarly, where leprosy-specific rehabilitation services are
available, people with other disabilities should be given access. This facilitates integration,
helps to break down stigma and promotes sustainability of rehabilitation services.37
Combined peer-led self-care interventions for people affected by leprosy and diabetes
patients could be a solution for both groups. People affected by leprosy would have more
sustainable POD services for the future and may benefit from a reduction in leprosy-related
stigma. Diabetes patients would gain access to existing (leprosy) POD services. However,
information is lacking on existing combined interventions and the perceived feasibility of
new initiatives. The main objective of this study is to explore the opinions of health care
professionals about the possibility of combined peer-led self-care interventions, in particular,
but not restricted to, combined SCGs for people affected by leprosy and diabetes patients in
leprosy-endemic countries. To do this, resemblances in complications and current practices
are first described.

Material and Methods


PROCEDURES AND STUDY SAMPLE

The target population of this exploratory study consisted of health care workers and
professionals, mainly involved with people affected by leprosy and diabetes patients. An
online questionnaire was sent out to about 300 health care workers and professionals.
Included were participants of conferences concerning leprosy or wound and lymphedema
care, members of the Leprosy Mailing List, members of the International Working Group on
the Diabetic Foot, and members of the International Diabetes Federation. Also, the authors
of relevant articles were approached to participate. To maximise the number of responses,
all respondents were asked to forward the questionnaire to others. An offline-version was
attached for those with insufficient internet access.
In addition, to get a better insight into reasons and motivations for the answers given
in the questionnaire, 41 (key) informants were approached for semi-structured, in-depth
interviews.

MATERIALS AND ANALYSIS

The questionnaire consisted of 23 questions (displayed in the Annex) and was conducted
through SurveyMonkey and analysed with SPSS 19.0. Frequencies and percentages of
different variables were derived, using stratification for the type of patients the respondents
are working with; only people affected by leprosy, only diabetes patients, both, other
patients or no patients. Differences between these categories were investigated by cross
tabulation (either Chi-squared test or Fishers exact test). To provide a rationale for combined
interventions, the respondents were asked to provide information about current practice
a
Van Kats J (2011) Self-care in leprosy and diabetes and the role of Self Care Groups. MPA master thesis, in
association with Netherlands Leprosy Relief, supervised by Erik Post and Wim van Brakel.
270 W. de Bruin et al.

Box 1. Topics questionnaire

. Resemblance between leprosy diabetes concerning the physical complications,


psychological impact and social consequences of both diseases
. Current practices in POD and self-management
. General, physical and psychosocial advantages and disadvantages of combined
care interventions
. The professionals and their patients expected willingness to become involved
. Suggestions for facilitation and barriers
. Knowledge exchange between the field of leprosy and the field of diabetes within
(work) country
. Experience with SCGs
. Awareness of existing combined multi-disability SCGs (country of existence and
conditions included)
. Possibility of combined self-care/self-management interventions for people with
insensitive feet/hands, caused either by leprosy or by diabetes

within their own discipline, and rate resemblances between leprosy and diabetes concerning
physical, psychological and social aspects. Other topics discussed in the questionnaire are
depicted in Box 1.
The questionnaire was based on literature and the research protocol. The questionnaire
was specifically developed for this study, because no existing questionnaire could be found.
It was pilot tested among several key-informants and adjusted according to the results of
the pilot. It was not separately validated.
Semi-structured in-depth interviews were performed with key informants, either face-to-
face or by using telephone/Skype. An interview guide was used, the content of which
corresponded to the questions of the questionnaire. After receiving about 100 completed
online questionnaires, the interviewees were also asked to share their thoughts on the
preliminary data. All interviews were recorded; transcripts were analysed. Topics that were
mentioned repeatedly were highlighted using color-codes. These topics were classified per
informant according to research questions, to gain an overview of the collected data.
Both data from the questionnaire and the interviews were processed anonymously. No
ethical approval was obtained.

Results

In total, 245 respondents filled in the questionnaire; 17 only filled in personal information but
no questions, and one uploaded an identical questionnaire twice. These were excluded from
the study. The average number of years of working experience was 20. Further details of the
study of the quantitative part can be found in Table 1.
There was an equal distribution of professionals working with only leprosy (326%) or
only diabetes (322%). Most respondents were medical doctors. The results of the quantitative
part of the study is depicted in Table 2 and Table 3.
Combining peer-led self-care interventions 271

Table 1. Description of the study population that participated by filling in the questionnaire. Data derived from
question 1-6 from the e-questionnaire

Number of people Percentage

Respondents 227
Gender (m/f) 135/92 595%/405%
Work continent
North America 8 35%
Central America 10 44%
South America 16 70%
Western Europe 38 167%
Eastern Europe 6 26%
North Africa 3 14%
Sub-Saharan Africa 55 242%
Middle East 6 26%
Central and North East Asia 10 44%
South Asia 41 182%
South East Asia 25 110%
Oceania 4 18%
Missing 5 22%
Profession
Medical Doctor 99 437%
Nurse 22 97%
Physiotherapist 19 84%
Occupational Therapist 8 35%
Wound care specialist 11 48%
Rehabilitation specialist 10 45%
Podiatrist 10 44%
Researcher 11 48%
Health manager/Policy maker 20 88%
Representative of patient organization 6 26%
Other 11 48%
Type of patients working with
Only leprosy 74 326%
Only diabetes 73 322%
Both leprosy and diabetes 35 154%
Other patients*-no leprosy or diabetes 12 53%
No patients 33 145%

*
i.a. people with lymphedema, Buruli ulcer, wounds due spinal cord injury, vascular wound and other chronic
wounds.

For the qualitative part of the study 22 interviews were conducted, of which two were of
limited value because of a language barrier.
A large majority of all questionnaire participants confirmed the resemblance in physical
complications (78%). Of all respondents, 388% stated Quite some resemblance and 392%
Much resemblance. Professionals working with both diseases chose the category Much
resemblance significantly more often than professionals working only with people affected
by leprosy (P 0008, Chi-squared test) or diabetes patients (P 0014, Chi-squared test).
During the interviews, the physical overlap was also repeatedly cited:
Well, physiologically they have similar presentations. So we see the same results of
neuropathy with loss of sensation, wounds that will happen when people have loss of sensation.
Obviously theyre similar in both leprosy and diabetes. (Nepal, leprosy care, podiatrist)
272 W. de Bruin et al.

Table 2. Resemblances between leprosy and diabetes, current practices and knowledge exchange. Data derived from
question 7, 8, 10 and 20 from the e-questionnaire

Specialization of respondent

Only Only
Leprosy Diabetes Both Overall
Question Answer N (%) N (%) N (%) N (%)

1: Resemblance in No resemblance 1 (16) 1 (18) 0 (00) 5 (27)


physical complications Little resemblance 19 (141) 4 (70) 0 (00) 16 (87)
Quite some resemblance 31 (484) 27 (474) 10 (333) 81 (440)
Much resemblance 23 (359) 25 (439) 20 (66,7) 82 (446)
Total 64 (100) 57 (100) 30 (100) 184 (100)
2: Resemblance in No resemblance 23 (390) 10 (200) 6 (188) 47 (270)
psychological impact Little resemblance 23 (390) 21 (420) 18 (563) 74 (425)
Quite some resemblance 6 (102) 9 (180) 5 (156) 27 (155)
Much resemblance 7 (119) 10 (200) 3 (94) 26 (149)
Total 59 (100) 50 (100) 32 (100) 174 (100)
3: Resemblance in No resemblance 15 (242) 6 (111) 6 (188) 33 (181)
social consequences Little resemblance 24 (387) 7 (130) 8 (250) 47 (258)
Quite some resemblance 15 (242) 22 (407) 10 (313) 58 (319)
Much resemblance 8 (129) 19 (352) 8 (250) 44 (242)
Total 62 (100) 54 (100) 32 (100) 182 (100)
4*: Current Prevention No POD 2 (27) 6 (82) 0 (00) 12 (53)
of Disability practices POD Screening 31 (42,5) 57 (781) 28 (800) 135 (597)
within sector POD Check-ups 40 (548) 58 (795) 26 (743) 143 (633)
POD Education 53 (726) 65 (890) 31 (886) 171 (757)
POD Self-care groups 33 (452) 14 (192) 16 (457) 76 (336)
Dont know and Not Applicable 3 (41) 0 (00) 0 (00) 15 (66)
POD other 10 (137) 8 (110) 4 (114) 29 (128)
Total* 73 73 35 226
5*: Current Self-Management No SM 3 (42) 2 (27) 2 (59) 12 (54)
practices within sector SM Skin assessment 56 (789) 59 (808) 29 (853) 167 (749)
SM Self wound care 40 (563) 33 (452) 30 (882) 125 (561)
SM Blood sugar maintenance 8 (113) 64 (878) 22 (647) 103 (462)
SM Exercise 27 (380) 41 (562) 22 (647) 108 (484)
SM Protective footwear 43 (606) 55 (753) 30 (882) 148 (664)
SM Other protective measures 31 (437) 14 (192) 27 (794) 89 (399)
SM Education severe complication 41 (577) 58 (795) 29 (853) 148 (664)
Dont know and Not Applicable 3 (42) 2 (27) 0 17 (76)
SM Other 2 (28) 6 (82) 4 (118) 13 (58)
Total* 71 73 34 223
6: Knowledge exchange No 36 (554) 50 (714) 16 (516) 122 (607)
Yes 17 (262) 12 (171) 11 (355) 46 (229)
Dont know 12 (185) 8 (114) 4 (129) 33 (164)
Total** 65 70 31 201

*
More than one answer was possible, numbers do not add up to 100%.
**
Missing data numbers do not add up to 100%.

According to the respondents, the psychological and social impact of leprosy and diabetes
show less resemblance than the physical complications. The majority of respondents (357%)
state that there is Little resemblance in psychological impact. The social consequences were
considered to be more similar: 279% state Quite some resemblance. Interviewees
elaborated that despite overlap in social consequences, such as activity limitations and social
Table 3. Combining care interventions for people with insensitive feet/hands, caused either by leprosy or by diabetes. Data derived from question 11 19, 22 and 23 from the
e-questionnaire

Specialization of respondent

Only Only Both Overall


Question Answer Leprosy N (%) Diabetes N (%) N (%) (%)

7: Existence of No 42 (568) 62 (849) 16 (457) 143 (630)


multi-disability SCGs Yes 32 (432) 11 (151) 19 (543) 84 (370)
Total 74 (100) 73 (100) 35 (100) 227 (100)
8*: People included in Buruli Ulcer 8 (95)
SCGs when answered yes Cerebral palsy 12 (143)
Congenital disorders 13 (155)
Diabetes 36 (429)
Down Syndrome 3 (36)
Epilepsy 4 (48)
Leprosy 48 (571)
Lymphtaic filiarasis 8 (95)

Combining peer-led self-care interventions


Lymphedema 5 (60)
Polio 9 (107)
Post accident injury 20 (238)
Spinal cord injury 13 (155)
TB 7 (83)
Vision Impaired 179)
Other 14 (167)
Total* 59
9*: General advantages No general advantages 2 (29) 4 (56) 1 (32) 8 (38)
Great resemblance in complications; both disorders require 35 (515) 40 (556) 24 (774) 114 (548)
self-management
Overlap in self-care measures 32 (471) 33 (458) 21 (677) 105 (505)
Easier to attain a sufficient number of participants 21 (309) 13 (181) 15 (484) 65 (313)
Localisation of interventions; close proximity to patients community 21 (309) 18 (250) 7 (226) 65 (313)
Increased community awareness of leprosy and diabetes 36 (529) 38 (528) 22 (710) 117 (563)
Financial benefits compared to disability-specific interventions 18 (265) 21 (292) 13 (419) 73 (351)
Dont know 5 (74) 11 (153) 0 22 (106)
Other 2 (29) 0 1 (32) 4 (19)
Total 68 72 31 208
10*: Physical advantages No physical advantages 5 (72) 6 (85) 2 (65) 15 (72)

273
Better adherence to self-care (eg., wound care, skin care) as a consequence 37 (536) 36 (507) 22 (710) 115 (553)
of peer pressure
274
Table 3. continued
Specialization of respondent

Only Only Both Overall

W. de Bruin et al.
Question Answer Leprosy N (%) Diabetes N (%) N (%) (%)

Additional exchange of self-care practices 36 (522) 32 (451) 21 (677) 113 (543)


Additional exchange of self-care knowledge 35 (507) 33 (465) 20 (645) 109 (524)
Dont know 7 (101) 16 (225) 1 (32) 30 (144)
Other 0 0 2 (65) 2 (10)
Total 69 71 31 208
11*: Psychosocial advantages No psychosocial advantages 4 (59) 8 (113) 0 13(63)
More contact with peers 35 (515) 32 (451) 21 (677) 107 (519)
Decreased exclusion experience 39 (574) 29 (408) 23 (742) 113 (549)
Improved morale 21 (309) 24 (338) 16 (516) 81 (393)
Dont know 4 (59) 15 (211) 1 (32) 26 (126)
Other 3 (44) 2 (28) 2 (65) 8 (39)
Total 68 71 31 206
12*: General disadvantages No general disadvantages 19 (284) 19 (268) 15 (500) 69 (338)
Little resemblance in complications 7 (104) 2 (28) 0 10 (49)
Differences in self-management or self-care 10 (149) 9 (127) 4 (133) 26 (127)
Differences in socio-economic status 29 (433) 19 (268) 11 (367) 67 (328)
Differences in age; on average, people affected by leprosy are older than 8 (119) 4 (56) 3 (100) 19 (93)
diabetes patients
Low density of patients 9 (134) 12 (169) 4 (133) 31 (152)
Dont know 6 (90) 21 (296) 3 (100) 37 (181)
Other 1 (15) 2 (28) 1 (33) 8 (39)
Total 67 71 30 204
13*: Physical disadvantages No physical disadvantages 19 (284) 13 (186) 9 (290) 50 (244)
Less disease specific attention 16 (239) 9 (129) 9 (290) 41 (200)
Diabetes is a complicated disorder; loss of sensation in feet/hands is only 24 (358) 36 (514) 12 (387) 89 (434)
one aspect
Diabetes-related wounds quickly become infected and infection can spread 19 (284) 26 (371) 12 (387) 68 (332)
rapidly causing danger for the patient
Dont know 6 (90) 14 (200) 1 (32) 27 (132)
Other 2 (30) 2 (29) 1 (32) 7 (34)
Total 67 70 31 205
14*: Psychosocial disadvantages No psychosocial disadvantages 15 (234) 11 (159) 9 (290) 46 (230)
Lack of affinity with other group members; difficulties creating group spirit 22 (343) 21 (304) 9 (290) 63 (315)
Perception to be associated with another disorder 29 (453) 27 (391) 18 (581) 92 (460)
Table 3. continued
Specialization of respondent

Only Only Both Overall


Question Answer Leprosy N (%) Diabetes N (%) N (%) (%)

Dont know 5 (78) 18 (261) 2 (65) 29 (1450


Other 5 (78) 5 (72) 3 (97) 14 (70)
Total 64 69 31 200
15: Barriers No barriers 25 (379) 20 (285) 9 (290) 60 (297)
Barriers 28 (424) 23 (329) 17 (548) 87 (431)
Dont know 13 (197) 27 (386) 5 (162) 55 (272)
Total 66 (100) 70 (100) 31 (100) 202 (100)
16: Enablers No enablers 20 (317) 24 (338) 4 (133) 59 (295)
Enablers 31 (492) 19 (268) 22 (734) 87 (435)
Dont know 12 (191) 28 (394) 4 (133) 54 (270)
Total 63 (100) 71 (100) 30 (100) 200 (100)
17: Willingness specialists Strongly reject this concept 1 (16) 3 (43) 0 4 (20)
Not be interested 3 (46) 10 (146) 1 (32) 16 (80)
Consider this 21 (323) 25 (362) 8 (258) 65 (325)

Combining peer-led self-care interventions


Be very interested 35 (538) 24 (348) 22 (710) 98 (49)
Dont know 0 7 (101) 0 9 (45)
Not applicable 5 (77) 0 0 8 (40)
Total 65 (100) 69 (100) 31 (100) 200 (100)
18: Expected willingness patients Strongly reject this concept 1 (16) 3 (44) 0 4 (21)
Not be interested 4 (65) 16 (232) 5 (172) 27 (139)
Consider this 26 (419) 23 (333) 14 (483) 70 (361)
Be very interested 21 (339) 9 (130) 8 (276) 44 (227)
Dont know 8 (129) 15 (217) 2 (69) 35 (180)
Not applicable 2 (32) 3 (44) 0 14 (27)
Total 62 (100) 69 (100) 29 (100) 194 (100)
19: Rated possibility Not possible 2 (31) 5 (71) 2 (65) 10 (50)
Maybe possible 21 (323) 22 (314) 3 (97) 53 (264)
Possible 23 (354) 20 (286) 13 (419) 67 (333)
Possible and promising 18 (277) 20 (286) 12 (387) 62 (308)
Dont know 1 (15) 3 (43) 1 (32) 9 (45)
Total 65 (100) 70 (100) 31 (100) 201 (100)

*
More than one answer was possible, numbers do not add up to 100%.

275
**
Missing data numbers do not add up to 100%.
276 W. de Bruin et al.

participation restrictions, there is a major difference in social perception (including stigma)


and consequent social challenges:
There is a lot of difference in at least our country. Leprosy patients are not accepted in
society, particularly those who have visible deformities. And therefore they are outcast.
[: : :] While diabetics enjoy privileges, there is no social stigma and they are
economically better off than leprosy patients. (India, diabetes care, medical doctor)
Current practices in POD and self-management were explored. The questionnaire data
shows that 757% of all professionals use Education in prevention of disability to the affected
persons. SCGs as a strategy for POD is used far more often by professionals working with
people affected by leprosy (452%) than professionals working with diabetes (192%).
Interviewees were asked about topics discussed in these SCGs; these include treatment,
prevention of injuries, footwear, wound care and coping with social pressure and stigma.
The questionnaire data shows that 749% of the respondents indicated the use of
Education on skin assessment and care as a self-management practice. Professionals
working with diabetes patients explained that information on self-care for diabetes patients is
provided one-on-one and in groups. The interviewees did not know of any peer-led SCGs for
diabetes patients, in which information is both discussed and practiced. Another frequently
mentioned self-management practice was Either supplying or advising people to wear
protective footwear (664%). This was also often named as an important POD practice that is
relevant for both disease groups during the interviews. A significant difference in POD
practice reported by the interviewees is that for people affected by leprosy it is very beneficial
if they soak their feet, whereas in the case of the diabetic foot, soaking is strongly
discouraged. Lastly, Education in recognising severe complications (664%) was a
frequently selected self-management practice.
The existence of multi-disability SCGs was confirmed by the respondents: 432% of the
leprosy specialists, 151% of the diabetes specialists and 54% of professionals working with
both diseases reported to be aware of them. Professionals either working with people affected
by leprosy only or with both diseases reported the existence of multi-disability SCGs
significantly more often than professionals working only with diabetes patients (P , 0001
and P , 0001, Chi-squared tests). Conditions included in these multi-disability SCGs are
leprosy, diabetes, post-accidental injury, vision impaired, spinal cord injury, congenital
disorders, cerebral palsy, and poliomyelitis.
The majority of professionals working with both disorders declared themselves Very
interested in becoming involved with combined care interventions for people with
insensitive feet/hands (71%), as was the case with professionals working only with leprosy
(538%). Professionals working with only diabetes were least willing; still more than a third
stated they would Consider it (364%). The group of professionals working with both
diseases stated significantly more often that they are Very interested (71%) when compared
to the willingness of professionals working with only diabetes patients (348%) (P 0001,
Chi-squared test). When rating the expected willingness of the patients, more than a third of
respondents expect that their patients will Consider it (361%). Lastly, the possibility of
combined interventions was rated (depicted in Figure 2).
Many professionals working with only leprosy rate a combined intervention as Possible
(354%) followed by 323% stating it is Maybe possible. Professionals working with only
diabetes patients are somewhat less optimistic; nearly a third rate combined interventions as
Combining peer-led self-care interventions 277

50%

40%

30%

20%

10%

0%
Only leprosy Only diabetes Both leprosy and diabetes

Not possible Maybe possible Possible Possible and promising

Figure 2. Possibility of combined care interventions rated by professionals working with different types of patients,
displayed in percentages.

Maybe possible (314%), followed by Possible (286%) and Possible and promising
(286%). Overall, professionals working with both diseases are the most positive. Forty-two
percent state it is Possible, followed by 387% stating it is Possible and promising. Only
97% of this group express doubts by stating it is Maybe possible. Furthermore, this group
confirmed several advantages and only mentioned few disadvantages of combined
interventions.
To understand these responses better, arguments in favour, arguments against, and
barriers to combining peer-led self-care interventions were explored through interviews and
semi-open questions in the questionnaire. Respondents were allowed more than one answer.
Respondents frequently confirmed the following arguments in favour of combined
interventions concerning physical aspects: Better adherence to self-care as a consequence of
peer pressure (553%), Additional exchange of self-care practices (543%) and Additional
exchange of self-care knowledge (524%). Expected psychosocial benefits were Decreased
exclusion experience (549%) and More contact with peers (519%). In combination with
Increased community awareness of leprosy and diabetes (563%) this might contribute to a
reduction of leprosy-related stigma and a reduction in the feeling of being special within the
field of leprosy, as cited by an interviewee:
: : : but I think it would go a long way to helping some of the stigma. [: : :] I also think it
would be a positive thing for people affected by leprosy to see that other people also
have similar problems. (Nigeria, leprosy care, physiotherapist)
Several interviewees were unsure whether reduced leprosy stigma is required before
engaging in a combined intervention, or that it will be a benefit as a result of it. Other reasons
for combining interventions indicated by the respondents were Financial benefits compared
to disability-specific interventions (351%) and Easier to attain a sufficient number of
participants (313%).
Various arguments against combined interventions were stated. Two frequently
confirmed arguments against it were that Diabetes is a complicated disorder; loss of
sensation in feet/hands is only one aspect (434%), and Diabetes-related wounds quickly
become infected and infection can spread rapidly causing danger for the patient (332%).
The complexity of diabetes when compared to leprosy often leads to disagreement on the
appropriateness of self-care practices. Several interviewees specialised in diabetes discourage
their patients to perform any form of self-care, whereas it is promoted for people affected by
278 W. de Bruin et al.

leprosy. Another physical disadvantage mentioned was that there would be Less disease-
specific attention (200%).
The above-mentioned arguments in favour or against combined interventions are
emphasised, either because they were frequently confirmed by respondents or often
mentioned by interviewees. Overall 431% of the respondents foresee barriers to the
implementation of combined interventions. The group of professionals working with both
diseases mentioned most barriers, the most frequent being the difference in socio-economic
status (SES):
Personally, I think with our current model it would be very difficult. Because, although
from a medical perspective youre looking at the same type of conditions. But socially,
youre looking at people with very different social statuses. (Bangladesh, leprosy care,
occupational therapist)
Leprosy-related stigma was often cited to be an important barrier to overcome.
Interviewees indicated two main reasons for this stigma; leprosy is often associated with a
low SES and, second, there is still fear of becoming infected with the disease. Several
interviewees declared that these would be major reasons for diabetes patients to refrain from
participating in combined initiatives.
Further barriers mentioned include the attitude of professionals and the way health care
is organised. Interviewees thought there might be difficulties in making health care
professionals see the relevance of combining peer-led self-care interventions. The vertical
organisation of health care systems might impede combined efforts; there currently is no or
limited integration of different fields of medicine.
Only 229% of all respondents indicated that they were aware of knowledge exchange
between the field of leprosy and that of diabetes. Reasons for not doing this are professionals
attitudes, the low prevalence of leprosy in some countries, and the fact that in the diabetes
sector there are many different specialists involved, instead of one single accountable
specialist. Most interviewees, however, indicated a clear overlap between the diseases and
that knowledge exchange would be beneficial.
Other conditions needed to initiate combined peer-led self-care interventions according to
interviewees, are a shared strategy in self-care and policy support:
Either the WHO, other international bodies, the government or a medical council
should make an integrated system. They will have to come up with a programme which is
obviously acceptable and feasible for the health care professionals, otherwise we will
continue to have lack of integration. (Pakistan, diabetes care, medical doctor)
Finally, respondents from both fields indicated that the feasibility of combined peer-led
self-care interventions would also depend on factors such as country, culture, religion and
health-infrastructure.

Discussion

Considering the decrease in leprosy and increase in diabetes, and the fact that POD efforts for
diabetes are still scarce in leprosy-endemic countries, combined POD efforts might have
advantages for both groups of people. Furthermore, the overall increased pressure on
Combining peer-led self-care interventions 279

resources for health care11 13 would favour more self-care focused interventions. This study
was performed to assess the opinions of various health care workers and professionals on the
desirability and feasibility of combined peer-led self-care interventions.
Professionals widely recognised the similarities in physical complications between
leprosy and diabetes. Regarding the psychosocial aspects, however, there are some
differences, mainly in stigma, which is common against leprosy, but not against diabetes.
This leprosy-related stigma forms a barrier for combined interventions, which is more
extensively discussed below. Current interventions show much overlap in education in POD
and education in skin assessment. This offers a point of engagement for joint interventions.
A marked difference in POD that was reported is the practice of soaking feet, which is
encouraged in leprosy, but not in diabetes. The literature confirms the fact that soaking feet
is strongly discouraged in diabetes care under any circumstances.38
To initiate combined interventions, both professionals and patients should be willing to
participate. The majority of professionals declared themselves interested, and expect their
patients to consider it. Overall, they had a predominantly positive opinion about the idea of
combined interventions. Professionals working with both people affected by leprosy and
diabetes patients are most positive about this concept. Diabetes specialists seem to be most
critical, although they also seem open-minded about some kind of combined interventions.
They were not clear about the way in which this could be done and to what extent, but,
according to them, the formation of combined clinics for people with neuropathic
complications would be a good starting point.
A pre-condition that would facilitate combined interventions is knowledge exchange
between the field of leprosy and that of diabetes. This is currently limited. Furthermore, to
combine interventions, barriers must be addressed. These include leprosy-related stigma,
differences in SES, attitudes of health care professionals and the current organisation of health
care systems. Although challenging, leprosy-related stigma should be addressed using specific
intervention strategies.39 As several interviewees declared, it can be argued that it may not be
necessary to reduce leprosy stigma before engaging in a combined intervention. Instead,
stigma reduction may be a result of it. In our opinion, combined interventions would be a tool
to reduce stigma rather than vice versa. Some interviewees recommended focusing on urban
areas, since the people living there might be more advanced and educated, thus facilitating
efforts to reduce stigma. Differences in SES should be taken into account when initiating
combined interventions. It is not a barrier that can be overcome. In contrast to the
recommendation to focus on urban areas, other interviewees stated that focusing on rural areas
might be helpful, since the SES of people affected by leprosy and diabetes patients may be
more equal there. Professionals attitudes are a barrier that has to be overcome. We believe this
can be achieved by increasing knowledge exchange and providing policy support. The current
vertical organisation of health care systems should be changed over time; this is, however, not
easily achieved. Again, knowledge exchange and policy support would facilitate this.
Finally, it was argued that the feasibility of combined peer-led self-care interventions
would depend on many different factors. This impedes providing a one-size-fits-all answer
regarding the feasibility of combined interventions; each situation should to be assessed
separately. We recommend that pilot projects are designed as a first step.40 The ICCC-
framework (Figure 1) can be a useful tool when evaluating the different situations. It should
be taken into account that better outcomes will be achieved when integration of the different
actors is optimal.11
280 W. de Bruin et al.

In general, the opinions of respondents and those of the interviewees seem to confirm each
other; the interviewees provided more in-depth insights. Also, an effort was made to compare
findings with those of other studies, but similar studies could not be found. Literature can be
found about the physical and psychosocial consequences of each of the diseases, and about
current practices within each field, but only concerning physical complications, did studies
compare diabetes and leprosy.33,34 No additional information on the physical resemblance in
complications was found. However, this study does confirm the awareness of professionals
regarding the resemblances reported in the literature.
This study is the first to explore the resemblances in psychosocial consequences of both
diseases and to compare the current practices reported by health care professionals. Also,
their perspective concerning peer-led self-care interventions was explored for the first time.

STUDY LIMITATIONS AND RECOMMENDATIONS

The study sample was not randomly selected, which may have led to bias. Those in favour of
combined interventions may have been more likely to respond than those against. In addition,
some possible determinants were unequally distributed in the sample and may have caused
bias. There was an unequal representation of continents; a relatively large number of
professionals came from Western Europe (167%), a non-leprosy-endemic area. Sub-Saharan
Africa (242%) and South-Asia (182%) seem to be slightly over-represented, but this is
understandable since many leprosy-endemic countries are situated there and furthermore
population sizes are big in these regions. South America, with several leprosy endemic
countries, might be under-represented (70%). As mentioned, many respondents were
medical doctors (437%). It would be relevant to learn more about the opinions of other health
care professionals since they are often deeply involved in facilitation of SCGs.
Other limitations were language barriers and cultural differences, which might have led to
misunderstandings and wrong interpretations of some questions and answers, both in the
questionnaire and the interviews. Furthermore, there was one error in the design of the
questionnaire; answer options for advantages and disadvantages overlapped with enablers
and barriers. In the analysis this was addressed through aggregation of data.
This study addressed only one aspect of the ICCC framework (Figure 1). Only individual
members of the health care team were approached. As mentioned, integration and coherence
of all actors of the framework is essential. Policy makers, health care organisations,
community partners, the larger community, and patients and their families were not
approached in this study. Follow-up studies should explore the perspectives of the remaining
actors of the ICCC framework. As a first step, we recommend exploration of the opinions of
people affected by leprosy and diabetes patients.

Conclusions

We conclude that there are good prospects for combined peer-led self-care interventions for
people affected by leprosy or by diabetes in leprosy-endemic countries. It is essential to
increase knowledge exchange and address or take into account the most important barriers;
differences in SES, leprosy-related stigma, the attitude of health care professionals and the
vertical organisation of health care systems. It can be argued that some of these barriers need
not be overcome before implementing combined interventions, but may be overcome as
Combining peer-led self-care interventions 281

a result of it. Because of the multi-factorial context in which such interventions take place,
it is important to plan interventions in a context-specific manner. The ICCC-framework
might provide guidance in further research, pilots and implementation of combined
interventions for people affected by leprosy or by diabetes.

Acknowledgements

We would like to thank all the respondents to the questionnaire and the key informants with
whom we conducted an interview. Furthermore, we are very grateful to the Netherlands
Leprosy Relief (NLR) for providing the facilities to perform this study.
All authors declare that the answer to the question on competing interest form are all No,
and therefore have nothing to declare.

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