Self-Management Abilities of Diabetes in People With an Intellectual Disability Living in New Zealand

Self-Management Abilities of Diabetes in PeopleWith an Intellectual Disability Living inNew Zealandjppi_314 223..230

Leigh A. Hale*, Henrietta T. Trip†, Lisa Whitehead†, and Jenny Conder†,‡

*Centre for Physiotherapy Research, University of Otago, Dunedin; †Centre for Post-Graduate Nursing Studies, University of Otago,Christchurch; and ‡Donald Beasley Institute, Dunedin, New Zealand

Abstract Self-management of diabetes is encouraged; however, it is not an easy task and requires a good understanding of the disease.To determine how to improve the self-management abilities of diabetes in people with an intellectual disability (ID), this studyexplored the knowledge and understanding of diabetes held by a select group of adults with diabetes. The group was made up of 14adult New Zealanders (eight males and six females; age range 23–69 years) with type 1 diabetes (n = 6) and type 2 diabetes (n = 8).They and their nominated key informants were interviewed. Blood sugar levels (gained from using hemoglobin A1c (HbA1c) tests)were obtained on all participants. HbA1c levels ranged from 5.4% to 12.3%. The participants fell into three categories of under-standing diabetes: (1) those who had a good understanding of the disease; (2) those who had some knowledge but their actualunderstanding was limited; and (3) those who demonstrated only a very basic knowledge. It was found that all of the adults wereactively engaged in the self-management process, and all appeared to have some understanding of the role of diet, blood sugar levels,and exercise in the management of their disease. Support from others was important in this process, even for those adults who hada good understanding of the disease. Diabetes significantly impacted the adults’ lives, and in some cases, prevented them from livingindependently. When interviewed, the adults suggested strategies to assist with self-management such as the use of a “buddy” systemto encourage exercise. Authors concluded that adults with ID can be engaged in self-management of their diabetes. However, it isimportant that they continue to receive education and support throughout their lives and that time be spent with each individual toidentify how to provide the best education and support. Peer-led education and user-friendly resources are recommended to achievelifelong education and support.

Keywords: diabetes, education, health, intellectual disability, self-management

INTRODUCTION

Diabetes is common in the general population (WorldHealth Organization, 2011). In New Zealand, some 200,000 NewZealanders were estimated in 2002 to have type 2 diabetes; afigure that is predicted to double over the next decade (DiabetesNew Zealand, 2008; New Zealand Ministry of Health, 2002).Although the prevalence of diabetes is reported to be higherin people with intellectual disability (ID) compared with thegeneral population, the actual prevalence rates are unknown(Anwar, Walker, & Frier, 1998; Bergholdt, Eising, Nerup, &Pociot, 2006; Reichard & Stolzle, 2011; Rey-Conde & Lennox,2007; Rey-Conde, Lennox, & Tucker, 2005).

In diabetes, the pancreas does not produce enough of, or isunable to correctly use, insulin, a hormone that controls the levels

of sugar in the blood. An increase in blood sugar levels, known ashyperglycemia, can have serious consequences with time, damag-ing the heart, blood vessels, eyes, kidneys, and nerves. There aretwo types of diabetes. In type 1 diabetes, for unknown reasons,the individual affected does not produce sufficient insulin andrequires daily administration of insulin. In type 2 diabetes, thebody cannot effectively use insulin, and this type is thought mostcommonly caused by obesity and lack of physical activity. Type2 diabetes may be treated with oral medication, but in someinstances, insulin is also required. Healthy eating and exercise arethe cornerstones of management of this condition. To test forlevels of blood sugar, a hemoglobin A1c (HbA1c) test is used. Thistest measures the number of glucose molecules attached to thehemoglobin of the red blood cells, expressed as a percentage, overa period of about 2–3 months. A result of 4–6% is considerednormal (World Health Organization, 2011).

In New Zealand, the health system has moved to-ward community-centered care for diabetes, focusing on theimportance of prevention and self-management (King, 2001).Many people with type 2 diabetes can self-manage their condition

Received February 7, 2011; accepted September 3, 2011Correspondence: Leigh A. Hale, PhD, Centre for Physiotherapy Research,University of Otago, P.O. Box 56, Dunedin 9054, New Zealand. Tel:+64 3 479 5425; Fax: +64 3 479 8414; E-mail: [email protected]

Journal of Policy and Practice in Intellectual DisabilitiesVolume 8 Number 4 pp 223–230 December 2011

© 2011 International Association for the Scientific Study of Intellectual Disabilities and Wiley Periodicals, Inc.

in consultation with a healthcare professional, and individualresponsibility for daily care is encouraged. It is, however, not aneasy task as it may require not only self-monitoring of blood sugarlevels, medication, and insulin administration, but also self-carewith respect to diet, exercise, rest, and skin care; all of which canhave a great impact on a person’s life (Moser, van der Bruggen,Widdershoven, & Spreeuwenberg, 2008; Reed, Lawrence, Holling-hurst, & Higgs, 2003). For example, reporting on a case study,Napthine (2001) comments that“diabetes seemed to be somethingthat controlled . . . and ‘happened’ to the person. It was not anintegrated part of [their] life” (p. 19). Moser et al. (2008), in aqualitative exploration of the self-management of diabetes of 15older adults (aged 55–77 years) without cognitive disability, iden-tified that the processes of self-management required a complexinterplay of cognitive, practical, and social skills. The study foundthat for self-management to be successful, it was essential to havesupport from diabetes nurse specialists and family carers.Although people can easily learn the manual skills required forself-management of diabetes, learning the skills required to solveproblems and make decisions is much more difficult (Bonnet,Gagnayre, & d’Ivernois, 2001).

Reed et al. (2003), in an interview study of 130 adults withdiabetes with no reported cognitive impairments, found that onlyeight participants were able to correctly demonstrate bloodglucose testing, meter use, and insulin administration. The inabil-ity of participants to optimally self-manage their diabetes wasevidenced by their high HbA1c levels, with only one participant’slevels falling within the suggested therapeutic range. Beard, Clark,Hurel, and Cooke (2010) demonstrated a significant relationshipbetween poor understanding and higher levels of HbA1c in asurvey of 83 people with diabetes.

Self-management is a complex process that people, in general,do not find easy. It is especially challenging for people with ID(Rey-Conde & Lennox, 2007). Many people with ID require thesupport of another person, such as a paid support worker or afamily member, for day-to-day living, let alone for the manage-ment of a chronic disease such as diabetes. Support for peoplewith ID is further complicated by factors such as insufficientstaffing levels and limited financial support (Rey-Conde &Lennox, 2007). Furthermore, the authors noted that carers caringfor and supporting people with ID who have diabetes haveexpressed apprehension and feelings of being overwhelmed.

To improve the abilities of self-management of diabetes inpeople with ID and the types of professional support and careprovided to them, a better understanding of how people with IDlive with this chronic condition is crucial. The aim of this studywas to examine how diabetes management is actually carried outas well as how skillfulness is perceived by the adults and then toprovide information on the knowledge and understanding ofdiabetes held by a select group of adults with ID.

METHOD

Recruitment

Nonprobability purposive sampling (Polit & Beck, 2004)was used. Recruitment invitations were sent to People First

(a self-advocacy organization for people with ID), a diabetesdistrict nursing service, five primary health organizations,eight health and disability service providers, and eight generalmedical practices. In addition, an advertisement was placedin the regional newspaper. A contact person was identifiedfrom each organization that responded. The contact personprovided potential participants and direct care staff with aninformation sheet and an expression of interest form. Onreceipt of the expression of interest form, the researchers madecontact directly with persons with ID and/or their identifiedsupport person, and arrangements were made for the firstmeeting to discuss and complete the consent form. Participantswere invited to have a support person with them at thismeeting. Ethical approval for this research was obtainedthrough the Upper South A Ethics Committee (number URA/09/04/029).

Participants

The primary study subjects (i.e., the “participants”) wereadults with ID, aged 18 years or older, with either type 1 or type2 diabetes mellitus, and who were able to speak on their ownbehalf. The secondary study subjects were select informants,nominated by the adults with ID, who had been known to themfor at least 1 year.

Procedure

Participants with ID and their nominated informants wereinterviewed face to face with an open-ended, semi-structuredquestioning schedule by one of the researchers, either in separateinterviews or together. The participant’s support worker waspresent as necessary. The questions were derived through a reviewof key findings from the literature. Each interview was audio-recorded and transcribed verbatim. At the interview stage,participants were provided the opportunity to have a furtherface-to-face meeting to review the transcript. The nominatedinformants were also invited to review the transcripts that wereposted to them following the interviews.

The consent process enabled the researchers to make contactwith the general practitioner of the participant with ID for thepurposes of obtaining the HbA1C results for the preceding 12months. This provided an additional and objective measure of theextent of an individual’s diabetic control.

Data Analysis

The general inductive approach (Thomas, 2006) was usedto analyze data. Transcripts were read multiple times by theresearchers, and the emerging themes were identified, discussed,and debated resulting in a consensus of the reported themes. Thisapproach to analysis provided a constructive and systematicformat for analyzing the data and allowed for clear links betweenthe research objectives and summary findings to emerge fromthe raw data.

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RESULTS

Participants

Of the 15 adults with ID who volunteered for the study, 14adults (eight male and six females; mean age 50.9 years; range23–69 years; two with Down syndrome) met the inclusion criteriaand consented to participate. With respect to intellectual level,11 adults had a mild ID, and three adults had moderate ID, asdefined by themselves or their support worker. Six of the partici-pants were diagnosed with type 1 diabetes, and eight were diag-nosed with type 2 diabetes. At the time of the interview, diabeteshad been present for 2–5 years (for three participants), 6–10 years(for four participants), and for more than 10 years (for sevenparticipants). HbA1c results were obtained for all participants,and these ranged from 5.4% to 12.3%. While the therapeuticrange is 4.0–6.0%, only one participant fell into this category.Eight adults were in the 6.0–7.0% range, and the remaining fiveadults were above this range. Of those participants whose HbA1cresults were above the range of 7.0%, all had type 1 diabetes (fourhad the condition for over 10 years and one for between 2 and5 years).

Twelve participants were noted to have between one and fivecomorbid conditions including asthma, peripheral neuropathy,cellulitis, congestive heart failure, angina, renal failure, hyperten-sion, hypothyroidism, depression, hearing loss, and epilepsy.There was a family history of diabetes for eight participants.Three participants were of Maori descent, and 11 participantswere identified as New Zealand European. In terms of accommo-dation, 11 participants lived in residential care, two participantslived in supported independent living, and one participant wasliving independently.

The interviews ranged in length from 30 to 60 min and wereconducted in the person’s home in the presence of a supportworker. For some, this person was also the informant nominatedby the participant. Two individuals chose to participate indepen-dently and declined to nominate an informant. Within this paper,participants have been provided with pseudonyms for reasons ofconfidentiality.

Emerging Themes

A key emerging theme was the participants’ level of under-standing of their diabetes, which included, but was not limitedto, diet, blood sugar levels and, to a lesser extent, the role ofexercise. Participants spoke of the support they received fromothers, how they felt about having diabetes, and how other dis-eases impact on their lives. These emerging themes are discussedin detail below.

Level of Knowledge and Understanding

Participants fell into three categories of understandingdiabetes: those with a good understanding of the disease,those who had some knowledge but their actual understandingwas limited, and those who demonstrated only very basicknowledge.

Of the three participants who had a good knowledge ofdiabetes, two participants had mild intellectual impairment(Tony and John), and one participant had moderate impair-ment (Mary). Tony, for example, in summarizing what diabeteswas and how to self-manage this condition, said “I have a type2 diabetes . . . means it’s controlled . . . with medication . . . foodintake . . . not so much the lollies.” When asked about hismedication, he answered: “I think its Glipizide which is a medi-cation for diabetes. It’s about the only one I’m on for that.”Mary advised that she managed everything herself, althoughshe did need help with injecting her insulin as her hands shookwhen she tried. Her goal was to be more independent, and shewas learning how to draw up her own insulin. John told us hewas quite capable of self-managing his condition. His infor-mant, however, advised that because of John’s other healthconditions, he needed some supervision as he could be over-confident and convince new staff he knew what he was doing.This informant felt that staff needed to check that John wasreading his blood sugar levels correctly on testing, remind himto wash his hands on testing, and ensure that he was eatingappropriately.

Jamie, whose intellectual impairment is mild, was an insulin-dependent person with diabetes living independently in thecommunity and able to self-manage his diabetes. He hadsome awareness of the possible complications of diabetes thatmight result from poor management: “limbs can fall off andstuff . . . you get gangrene, rotting . . . because you’re not treatingyourself when you get too many highs.” He thought he managedhis diabetes well, but staff expressed concerns as he needed dailyprompts regarding his diet, blood sugar testing, insulin adjust-ment, and self-care. Jamie’s informant had even less confi-dence that Jamie knew what he was doing. While he had a goodknowledge of diabetes, he lacked the ability to understand andimplement the information when needed. Furthermore, Jamie’sproblems with numeracy heightened the informant’s concernabout his safety. However, several strategies were put in place toassist Jamie’s self-management of his diabetes. He attended a“self-management” conference, an interagency meeting was heldthat established telephone monitoring through a district nursingservice to advise on changes in medication and injection sites, andhe had been referred to a dietician.

In contrast to those with a good or moderately good under-standing of diabetes, the remaining participants demonstratedonly basic knowledge. While Jim (moderate level of intellectualimpairment) did not know about diabetes per se, he was able toadvise that he has his blood tested three times per week. Paul(moderate level of intellectual impairment) seemed to repeatwhat others had told him about diabetes in terms of diet, butin reference to having blood tests, he said: “Sometimes whenI go to hospital he takes them all with the needle. . . . I don’tknow what [the test is] for.” Similarly, Dan (with mild intellec-tual impairment) had a rudimentary understanding. Whenasked what diabetes was, he made reference to the blood: “Theblood sugar goes high and goes low, right down low and takesome jellybeans.” The limitation in Jane’s (with mild intellectualimpairment) understanding of her disease was evidenced byhow she equated her diabetes to her weight: “I think it makesme put on weight and I know it does and I know I’ve donesomething bad . . .”



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Awareness of Changes in Blood Sugar Levels

The study participant’s degree of understanding of diabeteswas illustrated by their knowledge of their blood sugar levels. Wefound only one participant clearly understood his blood sugarlevels: “. . . the diabetes of course . . . sometimes it does act up say20 and that’s too high, I have a Humalog [injectable, fast-actinginsulin] that will bring that down. I’m on a sliding scale with mybloods. . . . The dangerous part of my bloods is 1.9, . . . reallydangerous . . . but the trick is not to go into a coma. That’s whenyou need . . . glucagon.” Other participants were not quite sure ofthe numbers involved, as exemplified by Dan’s comments: “. . . awee bit down past zero it’s really dangerous.” In response to beingasked what level would be too high, Dan added, “[w]hen it getsabout 4.7, 4.8.”

Most participants appeared able to recognize when theirblood sugar levels were incorrect. They described low levels withadjectives such as “tired,” “miserable,” “grumpy,” “angry,” “hyper-active,” “depressed,” and “could not get on easily with others.”Conversely, when blood sugar levels were too high, they felt“anxious,” “getting hot in your face,” “when my balance goes onme, and I get very dozy and very tired,” or expressed it as “dizzi-ness,” “headache,” “walk funny,” and “feel light headed.”

Diet and Exercise Needs

All participants had some understanding of the role of food indiabetes management: that sweet food items should be avoidedand that fruit was good for them. Mary emphatically said: “Not toeat sugar one, no, no, sugar” and Amy (with mild intellectualimpairment) commented that diabetes is “[w]hen you can’t eatcertain food . . . I can’t eat chocolate . . . and I can’t eat lollies.”Dora (with mild intellectual impairment) was honest about herreality in saying “I eat too many potato chips, bad food . . . andCoke, lollies, chocolate things like that.” A fuller understanding ofan optimal diet was limited, even by those who had a very goodknowledge of diabetes. For example, Tony, one of the mostknowledgeable of all participants, advised, “I have what they callthese little Weet-Bix . . . they’re like little bricks, they’re supposeto have honey in it and I have that in the morning. Lunchtime ifI’m out I have a sandwich or I may have a pie, now this morn-ing . . . we had a bacon and eggs this morning . . .”

For those living in residential care, staff controlled portionsand limited what was available to the individual, and three indi-viduals had regular room checks for snacks and sweets. Althoughparticipants were supported in their food choice by staff (and inthe case of one participant, by his flatmate), it still was not easy. Itwas difficult if participants ate away from home or were in a socialcontext. For example, about one participant, an informant notedthat as others did not know of his diabetes, he just ate the foodprovided, even if it might not be suitable. Another participant hadmeals with a friend and her family and was often provided withinappropriate food.

One highlighted issue was that of communal living, wherepeople living in the same house have different dietary needs. Joyce(with mild intellectual impairment) advised that on “fish andchip night” she has her “weight watchers meal.” Loosing weightwas emphasized, according to Jane: “. . . I have to go for a walk or

get my exercise and lose weight.” For those living alone, it wasnoted that the high cost of eating the recommended combina-tions of food was an impediment.

Participants knew that exercise was good for diabetes man-agement, with walking the most common exercise undertaken.Two participants mentioned other exercises such as stationarycycling and swimming. The impression gained was one ofencouraging people to walk but not of a prescribed exerciseregime of the intensity to be of benefit. Some drawbacks identi-fied were age, as according to Jim he “can’t get far out therewalking up the road—without feeling buggered [tired].” Tom(with mild intellectual impairment), however, had a good idea toencourage exercise: “Well, what I like to see happen if I were tohave someone that has got diabetes—the same form as I amin and we might just support one another . . . we could go forwalks together. . . . Yeah, more like a buddy. . . . But if you havesomeone else in the same boat who needs to go for walks, it willgive me a reason why to go for walks.”

Information Needs

Most individuals could not recall receiving information whenthey were diagnosed with diabetes. One individual said that ifinformation was needed, “I asked my brother’s wife . . . she’s dia-betic too.” Participants were asked what more they would like toknow about their diabetes. Two individuals expressed interest inlearning how they developed diabetes and three were keen forothers to know how to support them, should they ever be in aposition that they could not tell anyone what to do. Tom said hewould like to know a bit more about the side effects of diabetes,and Tony was confident in the knowledge he had. He told us: “Iknow how to manage it fairly well. I know when it’s bad and whenit’s not bad, and I know when not to go out when I’m tired. . . . I’dalso get a St Johns alarm [a device to notify emergency services]put in because of it . . . you’ve always got that fear that ‘yes, itcould happen’ and had you had an alarm . . . around your wristthat you can actually just go like that and push it.”

Despite having several folders of pamphlets about diabetes,Dora said that she would like to know more about what sheshould buy food-wise. On the subject of brochures, Tom felt “thatinformation needs to be done in plain language form, this is reallyimportant.”

The study participants had some knowledge of the side effectsof diabetes, such as visual problems and skin infections, as Tomsaid “the blood vessel inside your eye can actually burst.” Tonyidentified skin infections: “[y]ou can get ulcers, ulcer on your leg,but that’s the feet, those are the main things, sores won’t healproperly.” Dora had been struggling with falls because of periph-eral neuropathy; she stated, “I’m losing my leg” and advised thather eyesight is not very good. All participants knew that theywould have diabetes for life.

Diabetes Management

Some discussion revolved around the actual testing of bloodsugar levels and the injecting of insulin. Many participants werebeing tested routinely; either they tested themselves or were tested



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by staff or by their general practitioner. For the former group,some staff supervision was required; however, for the most part,these participants were good at remembering to test. Mary didnot need staff to remind her: “I remember it in the mornings. . . that’s when I have my hot drink. I check it at about 4 p.m.when I come home.” Jamie tried to remember to test: “I try to testthree times a day . . . kind of find it difficult, it’s hard. . . . I thinkit’s like just laziness . . .” However, he also commented on feelingself-conscious when testing himself out in the community. Dora,on the other hand, did not like to wait for the district nurse tocome, as the time was often inconvenient, but did advise that shetakes “27 units every morning. I’m learning to do it myself. . . and sometimes I don’t do it. . . . I can’t be bothered.”Examples of help required by participants was the provision ofnew needles, being watched to ensure the procedure was donecorrectly, checking blood sugar level figures (eyesight ornumeracy issues), or being reminded to wash hands prior to anyprocedure.

Most participants knew what to do if their blood sugar levelswere low. They knew to eat something sweet, invariably a jelly-bean. Participants were less sure of what to do if their blood sugarlevels were too high. John and Mary said that they exercised iftheir blood sugar levels were too high, and John said he also hadHumalog (an insulin medication) available to him to bring hislevels down. With regard to knowing the role of insulin in themanagement of diabetes, Dora was able to say that it “helps tokeep the sugar down.” In contrast, Paul was not sure why he hadto be tested: “I don’t know what for.” He was also unaware ofwhen his blood sugar levels were unsafe.

Support

For most of the study participants, staff and health advisors inthe residential service were the main points of support. Primarycare, district nurses, family members, and general practitioners, aswell as the Diabetes Center, Healthline, or Diabetes New Zealand,were additional sources of support.

Only five participants had an individual diabetes manage-ment plan. Of concern was that two staff did not know such aplan existed until asked as part of this research, and the informa-tion was sought in the individuals’ files. Four adults stated thatthey had taught staff everything they knew about diabetes.Despite this, participants mostly expressed confidence that staffknew how to help them. For example, Jane advised, “. . . they justmake sure, make sure I have my tablets . . . that I do my exer-cise . . . that I keep away from sugar . . . I have diabetic tablets, Ihave those Saccharine.” While some adults were seen by theirgeneral practitioner on a quarterly basis, all participants had, atminimum, an annual health check as well as access to podiatryand retinopathy screening. Two out of the three adults who livedindependently had daily contact with a district nurse with respectto insulin and monitoring of blood sugar levels.

For most participants, the Diabetes Center played an impor-tant role in the management of their diabetes, providing themwith information and insulin management and monitoring theirweight and blood sugar levels. Inevitably, however, some of theadults found their visits stressful, such as Tom, who commented“every time I go in there I’m being weighed and the doctors sort

of say to me ‘oh, you’re putting on more weight, well, let ussee why this is happening,’ I feel very pressured, a bit personally.”For Dora, it had reached the stage where she refused to go“. . . because I was sick of it, got annoying.” Accessing the supportand expertise of the Diabetes Center had been positive for theothers. Tony was keen to learn more about diabetes as the Diabe-tes Center noting “can tell you more about it—what’s on thescene . . .” Jamie reported that his experience with the DiabetesCenter had been extremely beneficial as it had enabled a range ofmanagement options to be explored and this had assisted in hislearning how to better manage his diabetes and maintain hisindependence.

How Do You Feel about Having Diabetes?

The participants had differing opinions of what it was like forthem to have diabetes. Some were unconcerned, like John, whohad a number of comorbid health issues and commented that“I’m fine with having diabetes at this stage.” Paul was “not worriedat all,” and Dan did not “even notice.” Tony summed it up bysaying “it doesn’t worry me. I know it will probably shorten mylife eventually but, hey . . . it’s not going to go away, I’ve had it forso long now.”

Other participants, however, did express concern. Tom, forinstance, said he felt “a wee bit . . . angry sometimes” as to why hegot diabetes, and Jamie said, “I think it’s kind of sucky . . . thatyou have to inject every day . . . and just need to be on a strictdiet.” Helen (who had mild intellectual impairment) was “frus-trated when I can’t eat lots of nice foods.”Amy said it “feels awful”in reference to not being able to eat the same foods as others whenout socially. Dora did not like having diabetes as it meant she hadto wait for people, “my home is out and about; when I stayedhome . . . I was waiting and got bored.” Dora lives independentlyand requires daily supervision of her insulin injections by a dis-trict nurse. For these individuals, the impact of having diabeteswas significant in terms of the limitations they experiencedphysically and socially.

DISCUSSION

This study explored the extent of knowledge and understand-ing of diabetes in a select group of adults with ID. Overall, thefindings were positive in that all of the participants interviewedwere actively encouraged to self-manage their condition and wereable to take some ownership of their health despite limitations intheir cognitive abilities. Much of this self-management rangedfrom not eating sweet food items to being almost independent inmonitoring their diabetes. We found that although staff assistedthe adults in monitoring their blood sugar, they did not take overthe testing. Knowing how much assistance to provide was diffi-cult, especially if the individual appeared knowledgeable andconfident.

This study also demonstrated that it is possible for peoplewith ID to learn about and be involved in the managementof their diabetes. For this to occur, education must be contextspecific and engage not only the persons themselves, but also be



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collaborative with those who care for them at the community,primary health, and specialist levels (Napthine, 2001). Such edu-cation should be about mobilizing the knowledge and powerinherent in the individual and facilitating the ongoing monitor-ing, reporting, and practice revision that support staff mustundertake. In so doing, the knowledge, skills, and attitudes of allparties are challenged.

Education and support are important for optimizing self-management. For some adults, in spite of a good degree of knowl-edge, support and monitoring was required and such assistancelimited the ability for these individuals to lead fully independentlives, to live alone, or to go out with friends to eat. Some adultshad a reasonable extent of knowledge but required support tomake healthy food choices. This requirement for assistance wasnot a surprising finding as has been noted by Reed et al. (2003)and Beard et al. (2010) with respect to self-management amongadults with diabetes absent of any cognitive impairment.

What we did also observe is that education needs to beongoing. All of the adults had, at some point, received informa-tion about their diabetes from a variety of sources such as theDiabetes Center, general practitioners, district nurses, supportworkers as well as from reading brochures. Although thoseentities supporting the adults did emphasize the main self-management points (such as restrictions in diet), this educationwas not consistently revisited over time. It has been suggested thatstructured education for people with diabetes should be enduring(Reed et al., 2003). Many methods of delivering diabetes educa-tion have been described, including formal education from healthprofessionals and peer-led and user-led self-management train-ing programs (Reed et al., 2003). However, for people with ID, thesuccess of such methods can be limited as learning can be prob-lematic. Also, techniques employed may need to be adapted as itis known that visual representation and repetition of informationmay facilitate retention among persons with learning challenges.To ensure such retention, carers and health professionals mustwork toward establishing a better understanding of each indi-vidual’s capacity and mode of learning to ensure that informationis appropriately assimilated.

Such adaptations could include using language that is familiarto the person, ensuring that time is available for adequate presen-tation and integration, and repetition techniques are employed todeliver such information (Rey-Conde & Lennox, 2007). Web sitescontaining such information need to have appropriate content(Chisholm & Vanderheiden, 1999) and be geared for readersof varying comprehension levels. For example, Lennox, Edieb,Taylora, Rey-Condea, and McPheea (2009) developed a website (http://www.som.uq.edu.au/research/qcidd/diabetes/index.shtml) specifically for people with ID and for persons who maysupport them. The web site, designed using international website accessibility standards for people with disabilities, usedinformation that was gleaned from consultations with adults withID, care providers, and professionals. Web sites, such as this, canbe resources that can be used to impart knowledge and supportlifelong learning required to successfully self-manage diabetes.

This study demonstrated that peer-led education programsdeveloped by people with ID are possible. Although the literatureis limited as to evidence of the autonomy people with ID haveover their health needs (Wullink, Widdershoven, van Schrojen-stein Lantman-de Valk, Metsmakers, & Dinant, 2009), in our

study, the adults we spoke with were not only involved in themanagement of their diabetes, but they were able to generate andshare strategies to assist self-management (an example beinghaving a walking buddy so each could support the other throughexercise). They were also excellent informants as to the problemsthat people with ID face in their day-to-day management ofthe disease. For example, one of the adults we interviewed feltthat not enough was being done to prevent exposure to harmfuladditions to food such as excessive fat and salt. Another two ofthe adults talked to us about their own goals in terms of self-management, which included remaining independent by stayingwell with diabetes and learning how to manage insulin. In thisregard, we were pleased to find that two organizations were usinga patient-centered management plan approach to assist the adultsin the self-management of their diabetes.

Another key finding of the study was the effect diabetes hadon mood and the importance to recognize mood changes. Severalof the adults spoke of feeling “low” and depressed, or angry andagitated. While noting that such feelings may be an artifact ofcoping with diabetes, we also need to note that with this popula-tion, low mood, withdrawal, agitation, verbal or physical aggres-sion may be symptoms of a physical or mental health need andnot a behavioral problem (Krahn, Hammond, & Turner, 2006).Furthermore, we need to point out that such mood symptoms asdescribed by the adults could arise from a variety of sources. Theymay be symptoms of diabetes or of mental health problems, orpossibly a combination of both diabetes and preexisting or newlyemergent mental health issues (Anderson, Freedland, Clouse,& Lustman, 2001). Diagnosis of the underlying causes for suchsymptoms is thus complex, and with the higher prevalencerates of both mental health issues (Cooper, Smiley, Morrison,Williamson, & Allan, 2007) and diabetes in the ID population, ofpotential concern.

In interpreting our results, it is important to comment onsome limitations of the study and its data. One is the way we drewour participants. The participation in the study of people with IDwho have diabetes may have been limited due to a combination ofpersonal reticence or systemic factors. There is an expectationthat purposive sampling may increase the representative nature ofthe population (Schneider, Elliott, Beanland, LoBiondo-Wood, &Haber, 2003). However, in our case, it may have limited thebreadth of participation because we could only recruit voluntaryparticipants through a third party (in this case, some provider).This sets up demands on time, access, and possible relation-ship imbalances. For example, in identifying proxy informants,Perkins (2007) argues for careful selection. This can be difficult toachieve when working through a third party. It is not the scope inthis article to fully explore the recruitment challenges or biases, orhow to control for acquiescence in this population. Notwith-standing, the opportunity to gain a deeper understanding aboutan individual’s experiences is still considered to be of value(Ziviani, Lennox, Allison, Lyons, & Del Mar, 2004). With regard tothe inclusion in research of people with ID, the process is as validas the outcomes (Walmsley, 2004).

Another limitation is the representativeness of the adults andtheir conditions and how they handled the self-management. Werecognized that some people with ID are more likely to experi-ence poorer health outcomes when compared with age peers inthe general population (van Loon, Knibbe, & Van Hoeve, 2005).



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We aptly note that despite the limitations in recruitment, two outof the 14 participants had Down syndrome, and three partici-pants were of Maori descent (New Zealanders of Maori descentmake up about 14% of the population—in our study group theymade up 21%). People with Down syndrome are prone to expe-rience endocrine disorders and type 1 diabetes is prevalent(Anwar et al., 1998; Janicki et al., 2002), and perhaps the 14%inclusion of adults with Down syndrome may have skewed theresults somewhat. Vulnerability to poor health outcomes is alsocommon for Maori in New Zealand who have higher mortalityrates than non-Maori for long-term conditions including diabe-tes (New Zealand Ministry of Health, 2003). This too may haveskewed our results. In interpreting the findings, we caution thatour sample may not be considered to be fully representative of thepopulation of people with ID in New Zealand.

So what are the lessons learned from our exploratory study?First, we know that having diabetes impacts people’s lives(Napthine, 2001). This impact is probably even more significantfor people with ID who are reliant on others for support toself-manage their condition. As expressed by several participants,people with ID have to hope that those supporting them knowwhat to do. This is an expectation that requires well-trained andresourced staff. Staff shortages, attitudes, and changes can nega-tively affect this expectation. Second, deinstitutionalization hasnow been achieved in New Zealand, but many people with ID stilllive in communal living arrangements (where they eat commonmeals and have communal celebrations that involve food). Eatingdifferently from others and injecting and testing oneself in frontof others are all additional factors that make diabetes a moredifficult burden for people with ID. It was an unexpected findingthat so many participants appeared unconcerned about havingdiabetes and presented a philosophical approach toward theircondition. It is difficult to draw a conclusion about whether thislack of concern was because of poor understanding of the fullimpact diabetes can have on a person’s health or whether this wasjust another of life’s hurdles thrown in their path. Of the partici-pants who expressed a dislike for having diabetes, they did notlike how it restricted their diet, what social impact it had, and howit often curtailed freedom. Third, there was a deficit in the diseasemanagement information possessed by our study subjects.Several participants did know some of the long-term conse-quences of diabetes (e.g., that they should watch for skin infec-tions, have their eyes and feet checked regularly, and that theywould have the disease for life). Although, in some cases, this lackof knowledge did not seem to concern them, given their responsesto the question of how diabetes impacted on their lives, thisdeficit poses an inherent danger as each was in some way self-managing the disease. Diabetes management is a serious issue andits neglect can have life-threatening consequences. Thus, it isimportant that those adults who engage in self-management aremonitored and supported by carers and others who are watchfuland knowledgeable and can quickly recognize when things areamiss.

Although people with ID and diabetes are just as, if not more,susceptible to experiencing chronic conditions as the generalpopulation; the prevalence of diabetes in this population is largelyunknown. However, for those who have it, it is important thatthey continue to receive education and support throughout theirlives so they can be involved, to the fullest extent possible, in the

self-management of their diabetes. More could potentially beachieved if the education provided was peer led and ongoing forboth the individuals with ID and the services that support them.For this to be achieved, time must be spent to better understandhow to communicate medical and self-management informationrelated to diabetes. Such resources must be user friendly and in aplain language format (using a comprehension level useful forimparting and retaining information). Web-based resources maybe one of those venues to impart that information. Our data haveprovided us with significant insights as why this issue warrantsfurther exploration. Our data also reinforced the importance ofincluding people with ID in research about them as we could havenot gained these valuable insights without the help of our subjectsidentifying opportunities on improving the self-management ofdiabetes. Although this study was based in New Zealand, it islikely the findings are relevant for people with ID living elsewherein the world.

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Self-Management Abilities of Diabetes in People With an Intellectual Disability Living in New Zealand