ORIGINAL ARTICLE
The barriers and facilitators people with diabetes from a nonEnglish speaking background experience when managing their medications: a qualitative study Kate Claydon-Platt, Elizabeth Manias and Trisha Dunning
Aims and objectives. To explore the barriers to and facilitators of effective medication management from the perspectives of people with diabetes from a nonEnglish speaking background, carers and health professionals. Background. The barriers that people with diabetes experience managing their medications can adversely impact on health outcomes. People from nonEnglish speaking backgrounds are at risk of medication-related problems, although there is a paucity of research in this area. Design. A qualitative research design using a purposive sampling approach. Methods. People with type 1 or type 2 diabetes from a nonEnglish speaking background, their carers, and health professionals who assisted these people and their carers to manage their medications were recruited from the diabetes outpatient clinic at an adult teaching public hospital in Melbourne, Australia. Participants were interviewed using a semi-structured interview guide. All interviews were audio-recorded, transcribed verbatim and analysed using a thematic framework method. Results. Eleven people with diabetes, 10 carers and 10 health professionals were interviewed, and four key issues were identified: diabetes knowledge, diabetes impact, medication knowledge and medication management. The cost of medications, language barriers that hinder communication, forgetfulness, and poor knowledge and understanding emerged as barriers to effective medication management. Facilitators included the use of dose administration aids to manage medications, but current medication lists were not used. Conclusions. Findings revealed people with diabetes experienced a multitude of barriers when managing their medications, and, despite the problems people experienced, there appeared to be poor use of support aids to assist people to effectively manage their medications. Relevance to clinical practice. The findings can be used to develop strategies aiming at improving how people from nonEnglish speaking backgrounds manage their medicines.
Authors: Kate Claydon-Platt, PhD, RN, MEpi, PhD Researcher, Melbourne School of Health Sciences, The University of Melbourne, Carlton, Vic.; Elizabeth Manias, MPharm, PhD, RN, Professor, Melbourne School of Health Sciences, The University of Melbourne, Carlton, Vic.; Trisha Dunning, PhD, AM, RN, Professor Chair of Nursing and Director Centre for Nursing and Allied Health Research, Faculty of Health, Deakin
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What does this paper contribute to the wider global clinical community?
• The research explored the experi-
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ences of people with diabetes (PWD) from nonEnglish speaking backgrounds (NESB) to identify the barriers to and facilitators of optimal medication management. A number of barriers were identified: cost of medications, language barriers that hinder communication, forgetfulness, and poor knowledge and understanding of medications and diabetes; however, only a small number of people used decision support tools (facilitators) such as a medication list to manage their medications. The findings can be used to develop strategies aiming at improving how people from NESBs manage their medicines and improve medication safety.
University and Barwon Health Waterfront Campus, Geelong, Vic., Australia Correspondence: Kate Claydon-Platt, PhD Researcher, Melbourne School of Health Sciences, The University of Melbourne, Level 7, Alan Gilbert Building, 161 Barry Street, Carlton, Victoria 3010, Australia. Telephone: +61 3 8344 9463. E-mail: [email protected]
© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246, doi: 10.1111/jocn.12501
Original article
People with diabetes medication experiences
Key words: diabetes, interviews, medication safety, medication self-management, medication-related problems, nonEnglish speaking Accepted for publication: 3 September 2013
Introduction Diabetes management is largely carried out within the community and requires PWD to adhere to complex medication regimens. Medication nonadherence is a significant public health problem for people with a chronic disease: 30–50% of people do not take their medication as prescribed (Horne 1998). Poor adherence to medication regimens significantly compromises treatment effectiveness and can lead to medication-related problems and increased morbidity, mortality and health costs (Sabate & World Health Organization 2003, Sorensen et al. 2005).
Background The Australian population consists of a diverse range of ethnic groups, many of which are at high risk of diabetes compared with people from English-speaking backgrounds (ESB). The prevalence of diabetes in people born in Australia is 30% compared with 70% of people born in North Africa and the Middle East, 60% of people born in South-East Asia and 50% of people born in Southern and Eastern Europe (Australian Institute of Health & Welfare 2008). People with a chronic disease from a NESB are at increased risk of medication-related problems as language and communication issues undermine the capacity to optimally manage their medications (Stewart et al. 1999, Bolton et al. 2002, Kaplan et al. 2004, Keller et al. 2008, Ngoh 2009, Yang et al. 2009). Furthermore, a number of social determinants such as income, education and place of residency are known barriers to optimal health outcomes, because access to services and support are often limited (Brown et al. 2004, Jack et al. 2012). Currently, there is a paucity of information about how PWD from NESBs manage their medications in the Australian context. The aim of this study was to explore the barriers to and facilitators of effective medication management by PWD from NESBs from the perspectives of PWD from NESBs, carers and health professionals. © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246
Methods Study design A qualitative study design using a purposive sampling approach was undertaken. Sampling was aided by matrices that were constructed for each interview group, which ensured a representative cross-section was recruited for the interviews (Marshall 1996). Ethical approval for the study was obtained from the study hospital.
Setting and participants The study setting was an outpatient diabetes clinic of a large adult teaching public hospital in Melbourne, Australia. PWD were from NESBs, were currently taking prescribed medications, were aged 18 years or older and had attended the clinic at the study hospital at least once. NESB was defined as being born in a nonEnglish speaking country. PWD’s preferred language was not English; however, to be eligible to participate, participants needed to be able to speak English without the assistance of an interpreter.
Data collection The medical health records of PWD attending their diabetes outpatient appointment were systemically assessed for suitability using the matrices, carers were identified by asking PWD in the diabetes outpatient clinic whether another person assisted them with their medications, and health professionals associated with the hospital were targeted. Potential participants were then approached by the student researcher, and PWD, carers and health professionals who met the inclusion criteria were given a participant information and consent form (PICF). If they agreed to participate, written informed consent was obtained. Telephone interview was arranged with PWD and carers, as no private interview rooms were available in the study hospital. Faceto-face interviews were conducted with health professionals in their departmental offices.
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The interviews lasted from 30–60 minutes and all were recorded on a digital voice recorder except interviews with three health professionals who did not want their interviews audio-recorded; thus, extensive notes were taken for the three interviews. Interview guides were developed (Table 1).
Data analysis Interviews were analysed according to the five steps of the thematic framework method: familiarisation,
identifying a thematic framework, indexing, charting, and mapping and interpreting the data (Ritchie & Spencer 1994). Familiarisation was achieved by reading the interview transcripts and listening to the digital recordings, which enabled an in-depth understanding of the complexity and range of issues. A thematic framework was created by categorising key ideas and recurrent themes and linking the relationships between PWD, carers and health professionals.
Table 1 Interview guide used to conduct interviews with people with diabetes, carers and health professionals People with diabetes
Carers
Health professionals
How long have you had diabetes? How does diabetes affect you physically? Please tell me about this diabetes and its complications. How does diabetes affect you emotionally? Please tell me about this What medicines has the doctor prescribed for you? How often did the doctor ask you take each of your medicines? How do you think each of these medication works? (Probe: What does it do?) It is not always easy to take medicines at the time the doctor prescribed every day. Have you had any problems taking your medicines? (Probe: Have you ever missed some doses? Have you ever forgotten to take any medicines? Have you ever taken extra doses? Have you taken lower doses? If yes, ask: ‘Which ones?’ and ‘Why do you think that was?’) Have you ever stopped taking any of your medicines? If yes, ask: ‘Which ones?’ and ‘Why was that?’ When you are feeling well, do you ever stop taking your medicines? Have any of the medicines ever made you feel worse? If yes, ask: ‘Which ones?’, ‘Did you do anything about this?’ and ‘Did you stop taking the medicine?’ Do you take any medicines that your doctor did not prescribe? (Probe: for example, vitamins or medicine from the chemist, things from a health food shop or a naturopath?) Do you have help to manage your medicines? (Probe: Does anyone help you? Do you have a visiting nurse? Do you use a dosette box? Do you use a pen or InnoLet? Do you monitor you blood glucose levels?)
How long has the person you care for had diabetes? What do you know about this disease and its complications? What do you do to help (name of client)? (If no, probe: Do you help with cooking meals? Do you help with medicines?) (If yes, probe: Can you tell me about this? What do you do? What does this involve? Do you help with medicines? If yes, ask: ‘What do you do?’) How often does (name of client) take medicines? It is not always easy for people to take their medicines at the right time every day. Has (name of client) had any problems with taking medication? (Probes: Have they ever missed some doses? Have they forgotten to take their medicine? Have they ever taken extra doses? Have they taken lower doses?) If yes, ask: ‘Which ones?’ and ‘Why do you think that was?’ Has (name of client) ever stopped taking medication? If yes, ask: ‘Why was that?’
Please tell me a little about how you work with people from NESBs? How long have you been working with people from NESBs? Where exactly do you carry out your role? (Probe: Do you always work in a hospital? Do you ever work in a community setting?) What have you observed about how people of NESB use medicines? (Probe: Are there any differences among people belonging to the same nonEnglish speaking group? Are there any differences from people from ESB? If yes, ask: ‘Why do you think that is?’) Do people of NESBs ever stop taking their medicines? Why do you think this is? What do you do to assist people of NESB to manage their medicines? Is this helpful? How do you know this? (Probe: Have you done any studies about this issue?) What do you think are the most important factors that identify people from NESB who are most at risk of not taking, or inappropriately taking, their medication? (Probe: What are the barriers to and facilitators of effective medication management?) Is there anything else you would like to say about people of NESB and medicine use?
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© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246
Original article
People with diabetes medication experiences
The data were then indexed, by annotating each passage of transcript data with a relevant theme, and quotations representative to each of these main themes were also flagged. Emerging themes were then charted and compiled in a table. The themes were then mapped and interpreted by comparing and contrasting participants’ experiences and by searching for patterns in the data within each interview group and between groups. The final set of themes and subthemes important to medication self-management was then complied.
Results Descriptive statistics Eleven PWD were interviewed (Table 2). The average age was 657 years (SD = 112, range 35–77). PWD were born in Table 2 Demographic data of people with diabetes (n = 11) Characteristics Gender Female Male Age group (years) 31–40 61–70 71–80 Marital status Married Divorced Widowed Single Country of birth Italy Greece Macedonia Lebanon Egypt Yugoslavia Malta Cyprus Highest level of education achieved Primary school Secondary Trade school No schooling Current employment status Retired Disability pension Socioeconomic index for area First quintile Second quintile Third quintile Fourth quintile Fifth quintile
© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246
n
5 6 1 5 5 8 1 1 1 3 2 1 1 1 1 1 1 4 4 1 2 10 1 1 1 1 3 5
Italy, Greece, Malta, Egypt, Yugoslavia, Macedonia, Cyprus or Lebanon and had lived in Australia for an average of 443 years (SD = 132, range 10–59), and their preferred language was the native language of their country of birth, although all spoke English. The highest level of education achieved by PWD’s was trade school (n = 1), secondary school (n = 4), primary school (n = 4) and no formal schooling (n = 2). The disease and medication characteristics of the 11 PWD are shown in Table 3. The average duration of diabetes was 70 (SD = 94, range 3–36). Notably, five PWD were unable to recall having any other medical problems apart from diabetes. Five PWD were unable to remember what medications they were taking, although they acknowledged they were taking ‘many’ medications. Six were able to recall their medications: the mean number of medications prescribed was 60 (SD = 34, range 2–12), and the average number of doses per day was 94 (SD = 46, range 2–16). Ten carers were interviewed (Table 4). Their mean age was 488 years (SD = 194, range 23–81). Five carers were Table 3 Disease and medication characteristics of people with diabetes (n = 11) Characteristics Diabetes type Type 1 diabetes Type 2 diabetes Type 2 diabetes requiring insulin Duration of diabetes (years) 1–9 10–19 20–29 30–39 Number of medications prescribed* 1–5 5–10 11–15 Number of medication doses* 1–5 6–10 11–16 Use of medication aids Yes No Receiving assistance with medications Yes No Taking herbal medicines Yes No
n
3 1 7 2 5 2 2 2 3 1 1 1 4 3 8 1 10 3 8
*Five people were excluded because they were unable to remember which medicines they were prescribed (n = 6).
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K Claydon-Platt et al. Table 6 Characteristics of health professionals (n = 10)
Table 4 Demographic data of carers of people with diabetes (n = 10) Characteristics Gender Female Male Age group (years) 18–30 31–40 41–50 51–60 61–70 71–80 81 years and older Marital status Married Single Country of birth Australia Greece Hungary Fiji Italy Highest level of education achieved* Primary school Secondary school Trade school University undergraduate degree Current employment status Full-time employment No employment Retired Socioeconomic index for area† First quintile Second quintile Third quintile Fourth quintile Fifth quintile
Characteristics n
6 4 2 2 2 2 2 1 1
5 2 1 1 1 2 4 2 1 5 3 2 1 1 1 2 4
Table 5 Disease characteristics of the people with diabetes who were supported by carers (n = 10)
Diabetes type Type 1 diabetes Type 2 diabetes Type 2 diabetes requiring insulin Duration of diabetes (years)* 10 15 20 30 *Date of diagnosis was unknown for one participant (n = 9).
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7 3 4 3 2 1 2 4 3 1
6 4
*Missing data for one person. † Missing data for one person.
Characteristics
Gender Female Male Age group (years) 31–40 41–50 51–60 61–70 Health discipline Registered nurse Doctor Pharmacist Social worker
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born overseas and had resided in Australia for an average of 414 years (SD = 168, range 13–55). The diabetes characteristics of PWD who were supported by carers are shown in Table 5. None of the carers could fully describe the medical conditions and medications prescribed for the person for whom they cared. However, carers used a number of strategies to assist PWD to manage their medicines – collected medications from the pharmacy (n = 6), attended medical appointments (mainly to interpret) (n = 4), filled dose administration aids (n = 2), dialled or drew up insulin doses (n = 1) and administered insulin injections (n = 1). Ten health professionals were also interviewed (Table 6). There were more women in the sample than men, and the women were slightly younger (range 31–50) compared to the men (range 51–70). There was broad representation of areas of employment involved in medication prescribing, dispensing and/or educating: diabetes education, ambulatory care, hospital liaison, hospital pharmacy liaison, hospital pharmacy, community pharmacy, general practice, general practice liaison, emergency department (ED) and gerontology. Representation from both community and hospital services ensured that aspects relevant to inpatient and outpatient settings were explored.
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Interview issues 1 5 4 2 3 3 1
Four key issues emerged from interviews: diabetes knowledge, diabetes impact, medication knowledge and medication management. Diabetes knowledge Most PWD had lived with diabetes for more than seven years prior to the interview; however, their knowledge of diabetes and its complications was generally poor. © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246
Original article
People with diabetes medication experiences
Table 7 Diabetes knowledge and impact themes and subthemes with examples of quotes* Theme
Subtheme and quotes
Diabetes knowledge
Understanding diabetes and its complications One man, caring for his father who had T2DM for 30 years, stated that he knew ‘well everything practically [about diabetes] … it just destroys the body, everything, muscles, their sight, everything, everything’ (C01) A 23-year-old man, who cared for his father with T2DM, felt he had a poor understanding of his father’s diabetes, because he relied on information from his father. He did not attend medical appointments with his father, which meant he was unable to ask health professionals for information (C06) Monitoring of diabetes A 64-year-old woman who had T2DM requiring insulin for 36 years stated that ‘monitoring does not matter because I feel sick when [it is a] high or low blood sugar level’ (D02) Physical impact of diabetes A woman with insulin-requiring T2DM for 16 years stated ‘I feel very, very tired and I just want to lie down all day I can’t do anything because I’ve got no energy, and the doctor says because of the sugar [glucose] that’s why it makes me so tired’ (D03) Psychosocial impact of diabetes A 64-year-old woman, who lived with her husband, was worried about the impact that diabetes would have on her ability to self-care in the future and the effect it would have on her relationship with her husband (D01) A 72-year-old Greek man with diabetes stated he expected the doctor to give him something to fix the problem (D04) Burden of diabetes Mark, who lived with his father for whom he cared, said: ‘We can’t leave him alone at home ‘cause he hasn’t got any balance on him too, he falls down, so there’s always got to be somebody at home. So if we’re invited to a wedding as a whole family, um, mum’s got to stay back and can’t go anywhere. Yes, it’s getting a bit hard now because he can’t, even walk in the car, he can’t like get in the actual car and get out so it’s very, very difficult’ (C01)
Impact of diabetes
*Abbreviations listed identify the type of interview participant: people with diabetes (D), carers (C) and health professions (HP). Numbers were allocated to participants in each interview group.
Most people knew the type of diabetes they had, but were not aware of the serious nature of diabetes or associated complications. Ten of the 11 PWD were able to recall their diabetes type, but not the year they were diagnosed. One participant with insulin-requiring type 2 diabetes (T2DM) (for 12 years) said: ‘I [do] not have the bad one’ (D05) when asked what type of diabetes she had. Only three PWD were able to name any diabetes complications. In contrast, most carers had a reasonable understanding of diabetes, but three were overly confident about their level of knowledge. For example, one person, caring for his father who had T2DM for 30 years, stated that he knew ‘well everything practically [about diabetes] … it just destroys the body, everything, muscles, their sight, everything, everything’ (C01). Many carers reported they obtained information about diabetes and its complications from the person for whom they cared, and if the PWD had poor knowledge of their diabetes management, so did their carer (see Table 7). Most carers did not regard dyslipidaemia and hypertension as important health issues for PWD. One 44-year-old woman caring for her mother with insulin-requiring T2DM stated that her mother had ‘a little bit of cholesterol and high blood pressure, but no major concerns at this point’ (C04). Another woman, who cared for her mother with T2DM © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246
diagnosed 15 years ago, stated ‘[my mother] is in denial that she has diabetes … because she does not have to take insulin’ (C10). Blood glucose monitoring is a fundamental diabetes self-management skill and is essential to effective diabetes management. Only six PWD and four carers checked blood glucose levels every day. Those PWD who did not monitor blood glucose levels regularly commented that they relied on how they felt to determine their blood glucose levels. Similarly, carers who did not regularly check blood glucose levels of PWD relied on the appearance of PWD. Regardless of the frequency of blood glucose monitoring, all 11 PWD were concerned about the uncertainty associated with fluctuating blood glucose levels and not knowing what each day would bring. Four carers who regularly helped PWD monitor their blood glucose levels knew what hypoglycaemia and hyperglycaemia were and had an understanding about appropriate management. Diabetes impact All PWD felt diabetes had a negative impact on their emotional well-being. One man stated ‘I get upset because of diabetes because of all the physical effects of [the] disease’ (D07). Three PWD were prescribed antidepressant medications, although it was not known whether these were
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prescribed for depression or painful diabetic peripheral neuropathy. One person indicated she was taking the herbal medicine St John’s Wort for her ‘nerves’ (D01). However, she was not aware of the importance of informing health professionals that she was taking a herbal medicine or the potential adverse interactions St John’s Wort has with some commonly used medications (Therapeutic Goods Administration 2008). Nine PWD complained about excessive tiredness, which affected their ability to undertake physical activity (see Table 7). PWD felt their diabetes was a burden on their family and friends, especially when they had to rely on them for assistance with day-to-day living (see Table 7). One 64-year-old woman, who lived with her husband, was worried about the impact that diabetes would have on her ability to self-care in future and the effect of diabetes on her relationship with her husband (D01). The burden of caring for a person suffering the physical effects of diabetes also emerged in interviews with carers. A woman who cared for her aunt stated ‘because of her [Aunt’s] diabetes her lungs, heart, and kidneys are very weak, everything, month-by-month she’s just getting worse and worse’ (C03). Other carers felt they had only limited control over the person they cared for, which was frustrating for them. Only one health professional discussed the emotional and physical impact diabetes had on PWD’s ability to manage their medications. One general practitioner (GP) felt that PWD expect the doctor to simply ‘fix’ all their medical problems because PWD lacked insight into the importance of self-management and its effect on the outcomes of their disease. He felt the lack of insight was often due to cultural beliefs. Medication knowledge All PWD who were prescribed insulin were able to name the type of insulin and administration times, but not their
insulin doses. However, nine people had difficulty naming their other medications and/or administration times. Two PWD could identify all their medications and had used the same medications for a number of years. Both of them had lived in Australia longest of all the PWD, for 58 and 59 years, respectively, and both had a reasonable level of education (secondary school and trade school), although their socioeconomic level differed: one person from quintile 2 and the other from quintile 4. One man stated ‘I know my tablets, don’t worry’ (D06), and the other understood the importance of adjusting his insulin dose according to the amount of activity he performed. He said ‘when I’m active I lose a lot of sugar [glucose] and I get low, so I adjust my insulin when I do a bit of gardening and things like that, I take less insulin’ (D09). Most carers could name their relative’s insulin type. However, one carer relied on the colour of the insulin label to decide which insulin to administer to his father (see Table 8). Carers acknowledged that the people they cared for were prescribed many medications, but carers were unable to name the medicines. Also, some carers readily admitted they did not know the characteristics of the medications, for example ‘I wouldn’t have a clue’ (C05). Some carers could identify the type of medication used such as insulin and glucose-lowering tablet, and administration times such as meal times, but could not recall the names of medications. One woman who administered medications to her mother said: ‘no I am unsure [what her medications are] I just know she needs to take it before her meals’ (C10). People with diabetes received medicine information from a range of sources, including GPs, diabetes educators, endocrinologists, the media, and friends or family members. However, the information they received was not always accurate or relevant to the individual (see Table 8). Carers were asked whether they influenced the type of medications
Table 8 Medication knowledge and subthemes with examples of quotes* Theme
Subtheme and Quotes
Medication Knowledge
Provision of information A woman with insulin-requiring T2DM described her difficulty taking the correct medication dose because she received conflicting advice from doctors about her medication dose (D02) Understanding medication characteristics One carer relied on the colour of the insulin label to decide which insulin to administer to his father: ‘He’s got two types of insulin, I don’t know the names but one’s in a little yellow bottle, which works instantly, and the one with the green label, which is a slow [acting]. Yeah, and that’s the one we mostly give him, unless his sugars [glucose] are really, really high, we give him a small dose’ (C01) One geriatrician stated: ‘people have trouble understanding generic brands because if it’s [the medication] cheaper they [the PWD] believe it is not as effective’ (HP02)
*Abbreviations listed identify the type of interview participant: people with diabetes (D), carers (C) and health professions (HP). Numbers were allocated to participants in each interview group.
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Original article
used by the person for whom they cared. One 49-year-old woman who cared for her aunt admitted to telling her aunt not to buy a medicine prescribed by her GP because she believed ‘it would not work’. Six health professionals felt many people, including people from a NESB, had many misconceptions about medications. One geriatrician stated ‘people have trouble understanding generic brands because if it’s [the medication] cheaper they [the PWD] believe it is not as effective as the trade name’ (HP02). Health professionals described the difficulties they encountered educating PWD about their medications, including time constraints, language barriers and individual’s beliefs. One pharmacist indicated people have problems adhering to medications prescribed for nonsymptomatic conditions (HP03). Most health professionals recognised insufficient medication knowledge can undermine adherence. For example, ‘we often come across a lot of patients who don’t really understand why they’re taking the tablets and why they take them at a certain time. So give them a reason for actually taking it they might be a bit more compliant’ (HP05). A GP had another view: ‘No, I don’t think patients really want to know how the medication works or why they really need them. If the doctor says they need it, they will take it’ (HP01). All health professionals reported they had many difficulties educating people from NESBs about diabetes because of cultural and linguistic barriers. Thus, health messages needed to be kept simple. A community pharmacist stated: ‘[T]hat’s why it is really important to keep things really simple and not give the patient too much information’ (HP08). A community-based doctor said educating people from NESBs about their medications sometimes required a different approach such as offering food along with an education seminar. Four health professionals stated they found it difficult to access the hospital interpreter services. For example, a registered nurse from the hospital risk assessment programme indicated the quality of information provided to people from NESBs was compromised when interpreter services were not available or not efficiently co-ordinated. Medication management People with diabetes reported that they received inconsistent or conflicting advice from different health professionals about how to manage their medications (see Table 9). One emergency physician said people of NESBs were paradoxically less likely to have problems managing medicines than those from an ESB, possibly because people from NESBs were more likely to be identified as at high risk due to their language deficits; consequently, they received various inter© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246
People with diabetes medication experiences
ventions to improve their knowledge. One health professional indicated medication-related problems can occur if a person who had previously been nonadherent to their medications suddenly became adherent, particularly when that person was admitted to hospital (HP04). Forgetting was the most common reason individuals cited for not taking their medicines appropriately. One woman admitted she forgets her ‘fluid tablet’ [furosemide], then she can often feel the fluid and that is how she knows she has not taken the medication (D02). When asked whether she ever forgot to take her insulin, she replied: ‘yes, sometimes, I don’t know, then I didn’t take the late one, or the morning, the morning I won’t forget it, but the lunch time or afternoon I might forget it’ (D02). No PWD used a medication list to accurately record their current medications or remembered having a home medicines review (HMR). An HMR is a nationally funded medication review programme in Australia available to people living independently in their homes. The HMR requires collaboration between GPs who refer people, and community-based pharmacists who conduct the HMR (Australian Government Department of Health & Ageing 2008). Notably, none of the health professionals routinely referred people who would meet the criteria for an HMR, although the community-based pharmacist was accredited to conduct HMR. The reason health professionals did not refer people was many people attended hospital outside business hours or were admitted to hospital and not routinely followed up. Three PWD used dose administration aids: one participant filled his own dosette box and organised his medications and insulin syringes; a carer filled the dosette box for one participant; and a pharmacist filled the dosette box of another participant. One woman organised her medicines in a plastic bag beside her bed (D01) and another person organised her oral medication in the morning and prepared the all the doses for the day, she knew if her medicines were in the container she had not taken them (D10). Two PWD stored their prescriptions at their pharmacy so that they did not lose them. Only two PWD adjusted their insulin doses within a certain range recommended by their health professional according to blood glucose levels. For example, ‘you check your blood sugar [glucose] first or you just know according to what – that you’re going to be active so you take a bit less’ (D09). Another man said: ‘I always ask my doctor and he said to me when my blood sugar [glucose is] high I have to take [an] extra two units. Always I’m very careful how many units I’m taking but most days or sometimes during the week I change up to four units, if I need to change more, I ask my GP’ (D07).
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K Claydon-Platt et al. Table 9 Medication management and subthemes with examples of quotes* Theme
Subtheme and quotes
Medication management
Strategies and aids A woman with diabetes said she ‘got her oral medication each morning and prepared all the doses for the day’ (D10) Administration and storage A registered nurse working in a hospital liaison role stated the complexity of administration [insulin], such as checking blood glucose levels then adjusting insulin and then injecting, can be very difficult for some people. Some people also have complex social situations and as a result treat their health of the lowest priority. So they may not think that missing a dose here and there is so important particularly if they do not have any signs or symptoms as a result (HP07) A man, who cared for his father, stated he felt very confident adjusting the insulin doses depending on blood glucose levels:’30 mg [sic, international units], yep, that was too high, it used to lower his – used to lower really low so I’ve cut it down to about 22 and that’s perfect. He’s got two types of insulin, I don’t know the names but one’s in a little yellow bottle, which works instantly, and the one with the green label, which is a slow [acting]. Yeah, and that’s the one we mostly give him, unless his sugars [glucose] are really, really high, we give him a small dose. Depending on his [blood glucose] levels, if they’re sitting around the six we don’t give him anything, he’ll take something in the afternoon and check it then, so he probably – it’s an average of about two a day, one in the afternoon and one at night, and depending on the morning how high it is, if it hovers around the 13, 14 we’ll give him one, if it’s hovering around the six, we won’t’ (C01) Very commonly they’ll come in to the ED with a great big bag, you know, a plastic bag full of all sorts of things, here’s her tablets, so you go through them all, record the names, then the person gets admitted so you copy them on a drug chart and then you find out that in fact that one was stopped two months ago and you have to put the latest one, which is being started (HP04) Financial issues A GP said that ‘affording medication is sometimes difficult for these people … I think it comes down to the fact they have to take so many, each having different requirements’ (HP01)
*Abbreviations listed identify the type of interview participant: people with diabetes (D), carers (C) and health professions (HP). Numbers were allocated to participants in each interview group.
In contrast, a 77-year-old man with type 1 diabetes (T1DM) said he didn’t adjust: ‘Doesn’t matter. I always have the same dose’ (D08). Some PWD and some carers were capable of appropriately adjusting their insulin doses, but health professionals recognised the inherent complexity of adjusting doses according to blood glucose levels. Carers provided various types of assistance to help their relative manage their medications. The majority collected the medications from the pharmacy and attended medical appointments, usually to interpret. Eight carers frequently had to remind the person they cared for to take their medications. A man, who cared for his father, stated he felt very confident adjusting the insulin doses depending on blood glucose levels. His father was prescribed a morning and evening dose of insulin, but his son often withheld his father’s morning dose of insulin and gave it in the afternoon instead. All health professionals indicated forgetfulness was a major reason that people did not take their medications as prescribed. One health professional stated: ‘forgetting to take their medication is probably the biggest problem’. Many people were concerned about the high cost of medications; this was despite their socioeconomic background: cost was a significant problem for people taking multiple
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medications or medications not funded through the Pharmaceutical Benefits Scheme (PBS). The Australian PBS provides subsidised prescription medicines to ensure affordable and reliable access to a range of necessary medicines. The scheme is available to all Australian residents who hold a current Medicare card, and overseas visitors from countries with which Australia has a reciprocal healthcare agreement are also eligible (Australian Government Department of Health & Ageing 2013). One man described the financial burden of having diabetes: ‘it all adds up, and not that I want to, but sometimes I have to wait till the next pension day to get my medications’ (D02). Health professionals also reported medication cost could be a barrier to adherence. For example, an emergency physician implied that not being able to afford medications was more significant for younger people, because younger people tended to spend their money on drugs and alcohol compared with older people (HP04). Other health professionals indicated the cost of medications was not such an issue. A social worker said, ‘it used to be more of an issue but now we find if the person needs the medication then the family organise[s] to budget it in’ © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246
Original article
(HP09). However, this allocation of money for medications can be at the cost of other aspects of management such as maintaining a healthy diet. Many health professionals reported that hoarding and sharing medications was a significant problem. In particular, when individuals presented to hospital ED with a bag full of medications, it was difficult to determine which medicines were currently prescribed.
Discussion Thirty-one interviews were conducted with PWD, carers and health professionals. Four key issues were identified: diabetes knowledge, diabetes impact, medication knowledge and medication management. These data demonstrated the barriers to and facilitators of effective medication management.
Barriers Numerous barriers to effective medication management were elicited during the interviews, which included cost of medications, language barriers, communication issues, forgetfulness, and poor knowledge and understanding of medications. The high cost of medications was a barrier to achieving optimal medication management, and many PWD and carers commented that there were times when they did not have sufficient money to fill prescriptions when needed. Despite the majority of people residing in the most advantaged socioeconomic areas (quintile 4 or 5), the economic impact of medication costs was felt regardless from which socioeconomic quintile the person resided. Additionally, none of the 11 PWD were employed; 10 were retired and one was receiving government disability sickness benefits. This finding is consistent with previous research that shows an individual’s income level can directly influence medication adherence (Bolton et al. 2002, Leichter & Thomas 2003, Mojtabai & Olfson 2003, Barclay et al. 2007). However, health professionals did not fully appreciate the medicine-related financial burden PWD experience. Language barriers undermined effective medication management by reducing the quantity and quality of information conveyed to PWD. Likewise, poor communication resulted in nonadherence and, consequently, medicationrelated problems (Keller et al. 2008, Ngoh 2009). People with low health literacy often rely on family members or friends to read and relay medication directions (Stewart et al. 1999). A number of PWD relied on their carers to relay or translate information. All PWD were able to © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246
People with diabetes medication experiences
understand a certain level of English, but their level of health literacy was poor, despite having lived in Australia for an average of forty years. Furthermore, the PWD had a basic level of education, four of 11 PWD had only finished primary school and two had no formal schooling at all. Low levels of education and poor health literacy have previously been shown to be barriers to optimal management of health (Brown et al. 2004, Jack et al. 2012). Despite the fact that forgetfulness was one of the commonest barriers to using medications, the majority of PWD still relied on their memory to take their medications as prescribed. However, carers often had to remind their relative to take their medications. These findings are consistent with past research that shows forgetfulness is one of the most commonly reported reasons that individuals do not adhere to their medication regimens, particularity older people (Col et al. 1990, Houston-Miller et al. 1997, Arabe et al. 1998, Dunbar-Jacob et al. 2000, Dunning & Manias 2005). The reasons many people forget to take their medications are due to people being busy, lack of symptoms or failing memory (Houston-Miller et al. 1997, Arabe et al. 1998, DunbarJacob et al. 2000, Dunning & Manias 2005). A common factor affecting the ability of PWD to self-manage their medications was poor knowledge and understanding of their disease and medications. The interviews revealed PWD and carers only had a very basic knowledge and understanding of diabetes and medications. Many PWD and the carers in the present study could not recall the names of prescribed medications or the indications for their use. Poor medication knowledge is significantly associated with medication nonadherence (Lipton & Bird 1994, Burge et al. 2005), which is a major risk factor for poor outcomes, including medication-related problems. Lack of knowledge about diabetes results in medicationrelated problems (Ciechanowski et al. 2001, Schillinger et al. 2002, Gazmararian et al. 2003, Banerjee et al. 2004, Cavanaugh et al. 2009), and an individual’s risk of having a medication-related problem is increased if carers also have poor knowledge of the disease or medications (Williams et al. 2008). However, poor knowledge and understanding do not only apply to diabetes, PWD in the present study were relatively ignorant about their other health problems such as hypertension and hypercholesterolaemia, and the medications prescribed to treat these conditions. Furthermore, many carers actually relied on the PWD they cared for to provide them with relevant information. The present study suggests that health professionals did recognise their poor knowledge as an important issue affecting medication management. Many health professionals also highlighted the fact that they often had insufficient
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resources such as accessing interpreters outside of business hours to assist PWD. People with diabetes prescribed insulin have to regularly make decisions about their insulin doses based on their blood glucose patterns. Despite the fundamental importance of adjusting the insulin doses according to the blood glucose level, only a few PWD and carers checked blood glucose levels regularly or understood the importance of doing so. Those who did regularly monitor their blood glucose levels relied on how they felt or how the PWD appeared. The limited extent of blood glucose self-monitoring is similar to studies in the USA which showed that between 26–40% of people requiring insulin regularly monitored their blood glucose levels (Harris et al. 1993). Another study suggests blood glucose monitoring is one of the most difficult self-management practices to sustain (Hiscock et al. 2001).
Facilitators Use of resources, interventions or strategies to facilitate effective medication management varied. Some PWD and carers used dose administration aids; as the aids were written in English, as the aids were written in English for those people who had trouble reading English, the aid may not have been effective. However, no PWD or carers reported using an upto-date medication list to assist with appropriate dosing; many relied on their memory to take their medications correctly. Health professionals were concerned about the low use of a current medication list, and they indicated that it was more difficult for them to treat people without an up-todate medication list. However, none of the health professionals actively enabled PWD or carers to obtain or carry a medication list. Past research shows that simple and current medication lists improve medication management and reduce medication errors (Chae et al. 2009, National Prescribing Service; available at: http://www.nps.org.au, accessed 10 October 2010). Other researchers report many benefits of HMRs such as reduced hospital admissions, fewer hospital readmissions, lower mortality rates, increased quality of life and early identification of potential medication-related problems (Stewart et al. 1998a,b, 1999, Graffen et al. 2004, Sorensen et al. 2004). Nevertheless, none of the PWD interviewed had received an HMR, despite many of them meeting the referral criteria. This finding suggests that the current method of identifying people at risk and facilitating referral for a HMR is inadequate or that health professionals are not well informed of the referral criteria. Similarly, initiation of an HMR referral is not part of commonly used diabetes management guidelines, and other Australian studies
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suggest the HMR is currently underused (Australian Commission on Safety & Quality in Health Care 2009). There are a number of limitations to this study. The study was based on interviews conducted at one study site. The experience of barriers to PWD from NESB in other settings such as rural hospitals could be different. Interviews were undertaken with PWD and carers from NESB who were actually able to communicate in English. Other issues could have emerged if individuals without the ability to communicate in English were interviewed. Further research could involve interpreters to explore the medication management practices of people who require interpreters.
Conclusion An important finding was the enormity of the demands on PWD self-managing their disease. While a number of supports are available, the present research indicates that they are often underused. Thus, the findings suggest that strategies to better identify PWD of NESB and improved mechanisms of referral to community-based support services are needed to help them achieve optimal diabetes self-management. To improve medication management, PWD and carers need to be clearly informed about the long-term impact of diabetes and the importance of regular monitoring of the disease, and educated about medications.
Relevance to clinical practice Strategies to better identify PWD and referral to community-based support mechanisms for achieving optimal health management are needed, and PWD and carers need to be better informed about the long-term impact of diabetes and the importance of regular blood glucose monitoring. The findings of the study can be used to develop targeted strategies aimed at improving medication management of diabetes as experienced by people of NESBs.
Acknowledgements The authors acknowledge St Vincent Outpatient Clinic and the people who interviews and also Rosemary Turner, University of Melbourne, for her help and interviews of participants.
Hospital Diabetes participated in the research assistant, in the recruitment
Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ethi© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246
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People with diabetes medication experiences
cal_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data; (2) drafting the article or revising it critically for important intellectual content; and (3) final approval of the version to be published.
Funding Australian Research Council Linkage Project Grant LP0455401, and St. Vincent’s Hospital, Melbourne.
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© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246
The barriers and facilitators people with diabetes from a nonEnglish speaking background experience when managing their medications: a qualitative study Kate Claydon-Platt, Elizabeth Manias and Trisha Dunning
Aims and objectives. To explore the barriers to and facilitators of effective medication management from the perspectives of people with diabetes from a nonEnglish speaking background, carers and health professionals. Background. The barriers that people with diabetes experience managing their medications can adversely impact on health outcomes. People from nonEnglish speaking backgrounds are at risk of medication-related problems, although there is a paucity of research in this area. Design. A qualitative research design using a purposive sampling approach. Methods. People with type 1 or type 2 diabetes from a nonEnglish speaking background, their carers, and health professionals who assisted these people and their carers to manage their medications were recruited from the diabetes outpatient clinic at an adult teaching public hospital in Melbourne, Australia. Participants were interviewed using a semi-structured interview guide. All interviews were audio-recorded, transcribed verbatim and analysed using a thematic framework method. Results. Eleven people with diabetes, 10 carers and 10 health professionals were interviewed, and four key issues were identified: diabetes knowledge, diabetes impact, medication knowledge and medication management. The cost of medications, language barriers that hinder communication, forgetfulness, and poor knowledge and understanding emerged as barriers to effective medication management. Facilitators included the use of dose administration aids to manage medications, but current medication lists were not used. Conclusions. Findings revealed people with diabetes experienced a multitude of barriers when managing their medications, and, despite the problems people experienced, there appeared to be poor use of support aids to assist people to effectively manage their medications. Relevance to clinical practice. The findings can be used to develop strategies aiming at improving how people from nonEnglish speaking backgrounds manage their medicines.
Authors: Kate Claydon-Platt, PhD, RN, MEpi, PhD Researcher, Melbourne School of Health Sciences, The University of Melbourne, Carlton, Vic.; Elizabeth Manias, MPharm, PhD, RN, Professor, Melbourne School of Health Sciences, The University of Melbourne, Carlton, Vic.; Trisha Dunning, PhD, AM, RN, Professor Chair of Nursing and Director Centre for Nursing and Allied Health Research, Faculty of Health, Deakin
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What does this paper contribute to the wider global clinical community?
• The research explored the experi-
•
•
ences of people with diabetes (PWD) from nonEnglish speaking backgrounds (NESB) to identify the barriers to and facilitators of optimal medication management. A number of barriers were identified: cost of medications, language barriers that hinder communication, forgetfulness, and poor knowledge and understanding of medications and diabetes; however, only a small number of people used decision support tools (facilitators) such as a medication list to manage their medications. The findings can be used to develop strategies aiming at improving how people from NESBs manage their medicines and improve medication safety.
University and Barwon Health Waterfront Campus, Geelong, Vic., Australia Correspondence: Kate Claydon-Platt, PhD Researcher, Melbourne School of Health Sciences, The University of Melbourne, Level 7, Alan Gilbert Building, 161 Barry Street, Carlton, Victoria 3010, Australia. Telephone: +61 3 8344 9463. E-mail: [email protected]
© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246, doi: 10.1111/jocn.12501
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People with diabetes medication experiences
Key words: diabetes, interviews, medication safety, medication self-management, medication-related problems, nonEnglish speaking Accepted for publication: 3 September 2013
Introduction Diabetes management is largely carried out within the community and requires PWD to adhere to complex medication regimens. Medication nonadherence is a significant public health problem for people with a chronic disease: 30–50% of people do not take their medication as prescribed (Horne 1998). Poor adherence to medication regimens significantly compromises treatment effectiveness and can lead to medication-related problems and increased morbidity, mortality and health costs (Sabate & World Health Organization 2003, Sorensen et al. 2005).
Background The Australian population consists of a diverse range of ethnic groups, many of which are at high risk of diabetes compared with people from English-speaking backgrounds (ESB). The prevalence of diabetes in people born in Australia is 30% compared with 70% of people born in North Africa and the Middle East, 60% of people born in South-East Asia and 50% of people born in Southern and Eastern Europe (Australian Institute of Health & Welfare 2008). People with a chronic disease from a NESB are at increased risk of medication-related problems as language and communication issues undermine the capacity to optimally manage their medications (Stewart et al. 1999, Bolton et al. 2002, Kaplan et al. 2004, Keller et al. 2008, Ngoh 2009, Yang et al. 2009). Furthermore, a number of social determinants such as income, education and place of residency are known barriers to optimal health outcomes, because access to services and support are often limited (Brown et al. 2004, Jack et al. 2012). Currently, there is a paucity of information about how PWD from NESBs manage their medications in the Australian context. The aim of this study was to explore the barriers to and facilitators of effective medication management by PWD from NESBs from the perspectives of PWD from NESBs, carers and health professionals. © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246
Methods Study design A qualitative study design using a purposive sampling approach was undertaken. Sampling was aided by matrices that were constructed for each interview group, which ensured a representative cross-section was recruited for the interviews (Marshall 1996). Ethical approval for the study was obtained from the study hospital.
Setting and participants The study setting was an outpatient diabetes clinic of a large adult teaching public hospital in Melbourne, Australia. PWD were from NESBs, were currently taking prescribed medications, were aged 18 years or older and had attended the clinic at the study hospital at least once. NESB was defined as being born in a nonEnglish speaking country. PWD’s preferred language was not English; however, to be eligible to participate, participants needed to be able to speak English without the assistance of an interpreter.
Data collection The medical health records of PWD attending their diabetes outpatient appointment were systemically assessed for suitability using the matrices, carers were identified by asking PWD in the diabetes outpatient clinic whether another person assisted them with their medications, and health professionals associated with the hospital were targeted. Potential participants were then approached by the student researcher, and PWD, carers and health professionals who met the inclusion criteria were given a participant information and consent form (PICF). If they agreed to participate, written informed consent was obtained. Telephone interview was arranged with PWD and carers, as no private interview rooms were available in the study hospital. Faceto-face interviews were conducted with health professionals in their departmental offices.
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The interviews lasted from 30–60 minutes and all were recorded on a digital voice recorder except interviews with three health professionals who did not want their interviews audio-recorded; thus, extensive notes were taken for the three interviews. Interview guides were developed (Table 1).
Data analysis Interviews were analysed according to the five steps of the thematic framework method: familiarisation,
identifying a thematic framework, indexing, charting, and mapping and interpreting the data (Ritchie & Spencer 1994). Familiarisation was achieved by reading the interview transcripts and listening to the digital recordings, which enabled an in-depth understanding of the complexity and range of issues. A thematic framework was created by categorising key ideas and recurrent themes and linking the relationships between PWD, carers and health professionals.
Table 1 Interview guide used to conduct interviews with people with diabetes, carers and health professionals People with diabetes
Carers
Health professionals
How long have you had diabetes? How does diabetes affect you physically? Please tell me about this diabetes and its complications. How does diabetes affect you emotionally? Please tell me about this What medicines has the doctor prescribed for you? How often did the doctor ask you take each of your medicines? How do you think each of these medication works? (Probe: What does it do?) It is not always easy to take medicines at the time the doctor prescribed every day. Have you had any problems taking your medicines? (Probe: Have you ever missed some doses? Have you ever forgotten to take any medicines? Have you ever taken extra doses? Have you taken lower doses? If yes, ask: ‘Which ones?’ and ‘Why do you think that was?’) Have you ever stopped taking any of your medicines? If yes, ask: ‘Which ones?’ and ‘Why was that?’ When you are feeling well, do you ever stop taking your medicines? Have any of the medicines ever made you feel worse? If yes, ask: ‘Which ones?’, ‘Did you do anything about this?’ and ‘Did you stop taking the medicine?’ Do you take any medicines that your doctor did not prescribe? (Probe: for example, vitamins or medicine from the chemist, things from a health food shop or a naturopath?) Do you have help to manage your medicines? (Probe: Does anyone help you? Do you have a visiting nurse? Do you use a dosette box? Do you use a pen or InnoLet? Do you monitor you blood glucose levels?)
How long has the person you care for had diabetes? What do you know about this disease and its complications? What do you do to help (name of client)? (If no, probe: Do you help with cooking meals? Do you help with medicines?) (If yes, probe: Can you tell me about this? What do you do? What does this involve? Do you help with medicines? If yes, ask: ‘What do you do?’) How often does (name of client) take medicines? It is not always easy for people to take their medicines at the right time every day. Has (name of client) had any problems with taking medication? (Probes: Have they ever missed some doses? Have they forgotten to take their medicine? Have they ever taken extra doses? Have they taken lower doses?) If yes, ask: ‘Which ones?’ and ‘Why do you think that was?’ Has (name of client) ever stopped taking medication? If yes, ask: ‘Why was that?’
Please tell me a little about how you work with people from NESBs? How long have you been working with people from NESBs? Where exactly do you carry out your role? (Probe: Do you always work in a hospital? Do you ever work in a community setting?) What have you observed about how people of NESB use medicines? (Probe: Are there any differences among people belonging to the same nonEnglish speaking group? Are there any differences from people from ESB? If yes, ask: ‘Why do you think that is?’) Do people of NESBs ever stop taking their medicines? Why do you think this is? What do you do to assist people of NESB to manage their medicines? Is this helpful? How do you know this? (Probe: Have you done any studies about this issue?) What do you think are the most important factors that identify people from NESB who are most at risk of not taking, or inappropriately taking, their medication? (Probe: What are the barriers to and facilitators of effective medication management?) Is there anything else you would like to say about people of NESB and medicine use?
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The data were then indexed, by annotating each passage of transcript data with a relevant theme, and quotations representative to each of these main themes were also flagged. Emerging themes were then charted and compiled in a table. The themes were then mapped and interpreted by comparing and contrasting participants’ experiences and by searching for patterns in the data within each interview group and between groups. The final set of themes and subthemes important to medication self-management was then complied.
Results Descriptive statistics Eleven PWD were interviewed (Table 2). The average age was 657 years (SD = 112, range 35–77). PWD were born in Table 2 Demographic data of people with diabetes (n = 11) Characteristics Gender Female Male Age group (years) 31–40 61–70 71–80 Marital status Married Divorced Widowed Single Country of birth Italy Greece Macedonia Lebanon Egypt Yugoslavia Malta Cyprus Highest level of education achieved Primary school Secondary Trade school No schooling Current employment status Retired Disability pension Socioeconomic index for area First quintile Second quintile Third quintile Fourth quintile Fifth quintile
© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246
n
5 6 1 5 5 8 1 1 1 3 2 1 1 1 1 1 1 4 4 1 2 10 1 1 1 1 3 5
Italy, Greece, Malta, Egypt, Yugoslavia, Macedonia, Cyprus or Lebanon and had lived in Australia for an average of 443 years (SD = 132, range 10–59), and their preferred language was the native language of their country of birth, although all spoke English. The highest level of education achieved by PWD’s was trade school (n = 1), secondary school (n = 4), primary school (n = 4) and no formal schooling (n = 2). The disease and medication characteristics of the 11 PWD are shown in Table 3. The average duration of diabetes was 70 (SD = 94, range 3–36). Notably, five PWD were unable to recall having any other medical problems apart from diabetes. Five PWD were unable to remember what medications they were taking, although they acknowledged they were taking ‘many’ medications. Six were able to recall their medications: the mean number of medications prescribed was 60 (SD = 34, range 2–12), and the average number of doses per day was 94 (SD = 46, range 2–16). Ten carers were interviewed (Table 4). Their mean age was 488 years (SD = 194, range 23–81). Five carers were Table 3 Disease and medication characteristics of people with diabetes (n = 11) Characteristics Diabetes type Type 1 diabetes Type 2 diabetes Type 2 diabetes requiring insulin Duration of diabetes (years) 1–9 10–19 20–29 30–39 Number of medications prescribed* 1–5 5–10 11–15 Number of medication doses* 1–5 6–10 11–16 Use of medication aids Yes No Receiving assistance with medications Yes No Taking herbal medicines Yes No
n
3 1 7 2 5 2 2 2 3 1 1 1 4 3 8 1 10 3 8
*Five people were excluded because they were unable to remember which medicines they were prescribed (n = 6).
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K Claydon-Platt et al. Table 6 Characteristics of health professionals (n = 10)
Table 4 Demographic data of carers of people with diabetes (n = 10) Characteristics Gender Female Male Age group (years) 18–30 31–40 41–50 51–60 61–70 71–80 81 years and older Marital status Married Single Country of birth Australia Greece Hungary Fiji Italy Highest level of education achieved* Primary school Secondary school Trade school University undergraduate degree Current employment status Full-time employment No employment Retired Socioeconomic index for area† First quintile Second quintile Third quintile Fourth quintile Fifth quintile
Characteristics n
6 4 2 2 2 2 2 1 1
5 2 1 1 1 2 4 2 1 5 3 2 1 1 1 2 4
Table 5 Disease characteristics of the people with diabetes who were supported by carers (n = 10)
Diabetes type Type 1 diabetes Type 2 diabetes Type 2 diabetes requiring insulin Duration of diabetes (years)* 10 15 20 30 *Date of diagnosis was unknown for one participant (n = 9).
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7 3 4 3 2 1 2 4 3 1
6 4
*Missing data for one person. † Missing data for one person.
Characteristics
Gender Female Male Age group (years) 31–40 41–50 51–60 61–70 Health discipline Registered nurse Doctor Pharmacist Social worker
n
born overseas and had resided in Australia for an average of 414 years (SD = 168, range 13–55). The diabetes characteristics of PWD who were supported by carers are shown in Table 5. None of the carers could fully describe the medical conditions and medications prescribed for the person for whom they cared. However, carers used a number of strategies to assist PWD to manage their medicines – collected medications from the pharmacy (n = 6), attended medical appointments (mainly to interpret) (n = 4), filled dose administration aids (n = 2), dialled or drew up insulin doses (n = 1) and administered insulin injections (n = 1). Ten health professionals were also interviewed (Table 6). There were more women in the sample than men, and the women were slightly younger (range 31–50) compared to the men (range 51–70). There was broad representation of areas of employment involved in medication prescribing, dispensing and/or educating: diabetes education, ambulatory care, hospital liaison, hospital pharmacy liaison, hospital pharmacy, community pharmacy, general practice, general practice liaison, emergency department (ED) and gerontology. Representation from both community and hospital services ensured that aspects relevant to inpatient and outpatient settings were explored.
n
Interview issues 1 5 4 2 3 3 1
Four key issues emerged from interviews: diabetes knowledge, diabetes impact, medication knowledge and medication management. Diabetes knowledge Most PWD had lived with diabetes for more than seven years prior to the interview; however, their knowledge of diabetes and its complications was generally poor. © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246
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Table 7 Diabetes knowledge and impact themes and subthemes with examples of quotes* Theme
Subtheme and quotes
Diabetes knowledge
Understanding diabetes and its complications One man, caring for his father who had T2DM for 30 years, stated that he knew ‘well everything practically [about diabetes] … it just destroys the body, everything, muscles, their sight, everything, everything’ (C01) A 23-year-old man, who cared for his father with T2DM, felt he had a poor understanding of his father’s diabetes, because he relied on information from his father. He did not attend medical appointments with his father, which meant he was unable to ask health professionals for information (C06) Monitoring of diabetes A 64-year-old woman who had T2DM requiring insulin for 36 years stated that ‘monitoring does not matter because I feel sick when [it is a] high or low blood sugar level’ (D02) Physical impact of diabetes A woman with insulin-requiring T2DM for 16 years stated ‘I feel very, very tired and I just want to lie down all day I can’t do anything because I’ve got no energy, and the doctor says because of the sugar [glucose] that’s why it makes me so tired’ (D03) Psychosocial impact of diabetes A 64-year-old woman, who lived with her husband, was worried about the impact that diabetes would have on her ability to self-care in the future and the effect it would have on her relationship with her husband (D01) A 72-year-old Greek man with diabetes stated he expected the doctor to give him something to fix the problem (D04) Burden of diabetes Mark, who lived with his father for whom he cared, said: ‘We can’t leave him alone at home ‘cause he hasn’t got any balance on him too, he falls down, so there’s always got to be somebody at home. So if we’re invited to a wedding as a whole family, um, mum’s got to stay back and can’t go anywhere. Yes, it’s getting a bit hard now because he can’t, even walk in the car, he can’t like get in the actual car and get out so it’s very, very difficult’ (C01)
Impact of diabetes
*Abbreviations listed identify the type of interview participant: people with diabetes (D), carers (C) and health professions (HP). Numbers were allocated to participants in each interview group.
Most people knew the type of diabetes they had, but were not aware of the serious nature of diabetes or associated complications. Ten of the 11 PWD were able to recall their diabetes type, but not the year they were diagnosed. One participant with insulin-requiring type 2 diabetes (T2DM) (for 12 years) said: ‘I [do] not have the bad one’ (D05) when asked what type of diabetes she had. Only three PWD were able to name any diabetes complications. In contrast, most carers had a reasonable understanding of diabetes, but three were overly confident about their level of knowledge. For example, one person, caring for his father who had T2DM for 30 years, stated that he knew ‘well everything practically [about diabetes] … it just destroys the body, everything, muscles, their sight, everything, everything’ (C01). Many carers reported they obtained information about diabetes and its complications from the person for whom they cared, and if the PWD had poor knowledge of their diabetes management, so did their carer (see Table 7). Most carers did not regard dyslipidaemia and hypertension as important health issues for PWD. One 44-year-old woman caring for her mother with insulin-requiring T2DM stated that her mother had ‘a little bit of cholesterol and high blood pressure, but no major concerns at this point’ (C04). Another woman, who cared for her mother with T2DM © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246
diagnosed 15 years ago, stated ‘[my mother] is in denial that she has diabetes … because she does not have to take insulin’ (C10). Blood glucose monitoring is a fundamental diabetes self-management skill and is essential to effective diabetes management. Only six PWD and four carers checked blood glucose levels every day. Those PWD who did not monitor blood glucose levels regularly commented that they relied on how they felt to determine their blood glucose levels. Similarly, carers who did not regularly check blood glucose levels of PWD relied on the appearance of PWD. Regardless of the frequency of blood glucose monitoring, all 11 PWD were concerned about the uncertainty associated with fluctuating blood glucose levels and not knowing what each day would bring. Four carers who regularly helped PWD monitor their blood glucose levels knew what hypoglycaemia and hyperglycaemia were and had an understanding about appropriate management. Diabetes impact All PWD felt diabetes had a negative impact on their emotional well-being. One man stated ‘I get upset because of diabetes because of all the physical effects of [the] disease’ (D07). Three PWD were prescribed antidepressant medications, although it was not known whether these were
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prescribed for depression or painful diabetic peripheral neuropathy. One person indicated she was taking the herbal medicine St John’s Wort for her ‘nerves’ (D01). However, she was not aware of the importance of informing health professionals that she was taking a herbal medicine or the potential adverse interactions St John’s Wort has with some commonly used medications (Therapeutic Goods Administration 2008). Nine PWD complained about excessive tiredness, which affected their ability to undertake physical activity (see Table 7). PWD felt their diabetes was a burden on their family and friends, especially when they had to rely on them for assistance with day-to-day living (see Table 7). One 64-year-old woman, who lived with her husband, was worried about the impact that diabetes would have on her ability to self-care in future and the effect of diabetes on her relationship with her husband (D01). The burden of caring for a person suffering the physical effects of diabetes also emerged in interviews with carers. A woman who cared for her aunt stated ‘because of her [Aunt’s] diabetes her lungs, heart, and kidneys are very weak, everything, month-by-month she’s just getting worse and worse’ (C03). Other carers felt they had only limited control over the person they cared for, which was frustrating for them. Only one health professional discussed the emotional and physical impact diabetes had on PWD’s ability to manage their medications. One general practitioner (GP) felt that PWD expect the doctor to simply ‘fix’ all their medical problems because PWD lacked insight into the importance of self-management and its effect on the outcomes of their disease. He felt the lack of insight was often due to cultural beliefs. Medication knowledge All PWD who were prescribed insulin were able to name the type of insulin and administration times, but not their
insulin doses. However, nine people had difficulty naming their other medications and/or administration times. Two PWD could identify all their medications and had used the same medications for a number of years. Both of them had lived in Australia longest of all the PWD, for 58 and 59 years, respectively, and both had a reasonable level of education (secondary school and trade school), although their socioeconomic level differed: one person from quintile 2 and the other from quintile 4. One man stated ‘I know my tablets, don’t worry’ (D06), and the other understood the importance of adjusting his insulin dose according to the amount of activity he performed. He said ‘when I’m active I lose a lot of sugar [glucose] and I get low, so I adjust my insulin when I do a bit of gardening and things like that, I take less insulin’ (D09). Most carers could name their relative’s insulin type. However, one carer relied on the colour of the insulin label to decide which insulin to administer to his father (see Table 8). Carers acknowledged that the people they cared for were prescribed many medications, but carers were unable to name the medicines. Also, some carers readily admitted they did not know the characteristics of the medications, for example ‘I wouldn’t have a clue’ (C05). Some carers could identify the type of medication used such as insulin and glucose-lowering tablet, and administration times such as meal times, but could not recall the names of medications. One woman who administered medications to her mother said: ‘no I am unsure [what her medications are] I just know she needs to take it before her meals’ (C10). People with diabetes received medicine information from a range of sources, including GPs, diabetes educators, endocrinologists, the media, and friends or family members. However, the information they received was not always accurate or relevant to the individual (see Table 8). Carers were asked whether they influenced the type of medications
Table 8 Medication knowledge and subthemes with examples of quotes* Theme
Subtheme and Quotes
Medication Knowledge
Provision of information A woman with insulin-requiring T2DM described her difficulty taking the correct medication dose because she received conflicting advice from doctors about her medication dose (D02) Understanding medication characteristics One carer relied on the colour of the insulin label to decide which insulin to administer to his father: ‘He’s got two types of insulin, I don’t know the names but one’s in a little yellow bottle, which works instantly, and the one with the green label, which is a slow [acting]. Yeah, and that’s the one we mostly give him, unless his sugars [glucose] are really, really high, we give him a small dose’ (C01) One geriatrician stated: ‘people have trouble understanding generic brands because if it’s [the medication] cheaper they [the PWD] believe it is not as effective’ (HP02)
*Abbreviations listed identify the type of interview participant: people with diabetes (D), carers (C) and health professions (HP). Numbers were allocated to participants in each interview group.
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used by the person for whom they cared. One 49-year-old woman who cared for her aunt admitted to telling her aunt not to buy a medicine prescribed by her GP because she believed ‘it would not work’. Six health professionals felt many people, including people from a NESB, had many misconceptions about medications. One geriatrician stated ‘people have trouble understanding generic brands because if it’s [the medication] cheaper they [the PWD] believe it is not as effective as the trade name’ (HP02). Health professionals described the difficulties they encountered educating PWD about their medications, including time constraints, language barriers and individual’s beliefs. One pharmacist indicated people have problems adhering to medications prescribed for nonsymptomatic conditions (HP03). Most health professionals recognised insufficient medication knowledge can undermine adherence. For example, ‘we often come across a lot of patients who don’t really understand why they’re taking the tablets and why they take them at a certain time. So give them a reason for actually taking it they might be a bit more compliant’ (HP05). A GP had another view: ‘No, I don’t think patients really want to know how the medication works or why they really need them. If the doctor says they need it, they will take it’ (HP01). All health professionals reported they had many difficulties educating people from NESBs about diabetes because of cultural and linguistic barriers. Thus, health messages needed to be kept simple. A community pharmacist stated: ‘[T]hat’s why it is really important to keep things really simple and not give the patient too much information’ (HP08). A community-based doctor said educating people from NESBs about their medications sometimes required a different approach such as offering food along with an education seminar. Four health professionals stated they found it difficult to access the hospital interpreter services. For example, a registered nurse from the hospital risk assessment programme indicated the quality of information provided to people from NESBs was compromised when interpreter services were not available or not efficiently co-ordinated. Medication management People with diabetes reported that they received inconsistent or conflicting advice from different health professionals about how to manage their medications (see Table 9). One emergency physician said people of NESBs were paradoxically less likely to have problems managing medicines than those from an ESB, possibly because people from NESBs were more likely to be identified as at high risk due to their language deficits; consequently, they received various inter© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246
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ventions to improve their knowledge. One health professional indicated medication-related problems can occur if a person who had previously been nonadherent to their medications suddenly became adherent, particularly when that person was admitted to hospital (HP04). Forgetting was the most common reason individuals cited for not taking their medicines appropriately. One woman admitted she forgets her ‘fluid tablet’ [furosemide], then she can often feel the fluid and that is how she knows she has not taken the medication (D02). When asked whether she ever forgot to take her insulin, she replied: ‘yes, sometimes, I don’t know, then I didn’t take the late one, or the morning, the morning I won’t forget it, but the lunch time or afternoon I might forget it’ (D02). No PWD used a medication list to accurately record their current medications or remembered having a home medicines review (HMR). An HMR is a nationally funded medication review programme in Australia available to people living independently in their homes. The HMR requires collaboration between GPs who refer people, and community-based pharmacists who conduct the HMR (Australian Government Department of Health & Ageing 2008). Notably, none of the health professionals routinely referred people who would meet the criteria for an HMR, although the community-based pharmacist was accredited to conduct HMR. The reason health professionals did not refer people was many people attended hospital outside business hours or were admitted to hospital and not routinely followed up. Three PWD used dose administration aids: one participant filled his own dosette box and organised his medications and insulin syringes; a carer filled the dosette box for one participant; and a pharmacist filled the dosette box of another participant. One woman organised her medicines in a plastic bag beside her bed (D01) and another person organised her oral medication in the morning and prepared the all the doses for the day, she knew if her medicines were in the container she had not taken them (D10). Two PWD stored their prescriptions at their pharmacy so that they did not lose them. Only two PWD adjusted their insulin doses within a certain range recommended by their health professional according to blood glucose levels. For example, ‘you check your blood sugar [glucose] first or you just know according to what – that you’re going to be active so you take a bit less’ (D09). Another man said: ‘I always ask my doctor and he said to me when my blood sugar [glucose is] high I have to take [an] extra two units. Always I’m very careful how many units I’m taking but most days or sometimes during the week I change up to four units, if I need to change more, I ask my GP’ (D07).
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K Claydon-Platt et al. Table 9 Medication management and subthemes with examples of quotes* Theme
Subtheme and quotes
Medication management
Strategies and aids A woman with diabetes said she ‘got her oral medication each morning and prepared all the doses for the day’ (D10) Administration and storage A registered nurse working in a hospital liaison role stated the complexity of administration [insulin], such as checking blood glucose levels then adjusting insulin and then injecting, can be very difficult for some people. Some people also have complex social situations and as a result treat their health of the lowest priority. So they may not think that missing a dose here and there is so important particularly if they do not have any signs or symptoms as a result (HP07) A man, who cared for his father, stated he felt very confident adjusting the insulin doses depending on blood glucose levels:’30 mg [sic, international units], yep, that was too high, it used to lower his – used to lower really low so I’ve cut it down to about 22 and that’s perfect. He’s got two types of insulin, I don’t know the names but one’s in a little yellow bottle, which works instantly, and the one with the green label, which is a slow [acting]. Yeah, and that’s the one we mostly give him, unless his sugars [glucose] are really, really high, we give him a small dose. Depending on his [blood glucose] levels, if they’re sitting around the six we don’t give him anything, he’ll take something in the afternoon and check it then, so he probably – it’s an average of about two a day, one in the afternoon and one at night, and depending on the morning how high it is, if it hovers around the 13, 14 we’ll give him one, if it’s hovering around the six, we won’t’ (C01) Very commonly they’ll come in to the ED with a great big bag, you know, a plastic bag full of all sorts of things, here’s her tablets, so you go through them all, record the names, then the person gets admitted so you copy them on a drug chart and then you find out that in fact that one was stopped two months ago and you have to put the latest one, which is being started (HP04) Financial issues A GP said that ‘affording medication is sometimes difficult for these people … I think it comes down to the fact they have to take so many, each having different requirements’ (HP01)
*Abbreviations listed identify the type of interview participant: people with diabetes (D), carers (C) and health professions (HP). Numbers were allocated to participants in each interview group.
In contrast, a 77-year-old man with type 1 diabetes (T1DM) said he didn’t adjust: ‘Doesn’t matter. I always have the same dose’ (D08). Some PWD and some carers were capable of appropriately adjusting their insulin doses, but health professionals recognised the inherent complexity of adjusting doses according to blood glucose levels. Carers provided various types of assistance to help their relative manage their medications. The majority collected the medications from the pharmacy and attended medical appointments, usually to interpret. Eight carers frequently had to remind the person they cared for to take their medications. A man, who cared for his father, stated he felt very confident adjusting the insulin doses depending on blood glucose levels. His father was prescribed a morning and evening dose of insulin, but his son often withheld his father’s morning dose of insulin and gave it in the afternoon instead. All health professionals indicated forgetfulness was a major reason that people did not take their medications as prescribed. One health professional stated: ‘forgetting to take their medication is probably the biggest problem’. Many people were concerned about the high cost of medications; this was despite their socioeconomic background: cost was a significant problem for people taking multiple
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medications or medications not funded through the Pharmaceutical Benefits Scheme (PBS). The Australian PBS provides subsidised prescription medicines to ensure affordable and reliable access to a range of necessary medicines. The scheme is available to all Australian residents who hold a current Medicare card, and overseas visitors from countries with which Australia has a reciprocal healthcare agreement are also eligible (Australian Government Department of Health & Ageing 2013). One man described the financial burden of having diabetes: ‘it all adds up, and not that I want to, but sometimes I have to wait till the next pension day to get my medications’ (D02). Health professionals also reported medication cost could be a barrier to adherence. For example, an emergency physician implied that not being able to afford medications was more significant for younger people, because younger people tended to spend their money on drugs and alcohol compared with older people (HP04). Other health professionals indicated the cost of medications was not such an issue. A social worker said, ‘it used to be more of an issue but now we find if the person needs the medication then the family organise[s] to budget it in’ © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246
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(HP09). However, this allocation of money for medications can be at the cost of other aspects of management such as maintaining a healthy diet. Many health professionals reported that hoarding and sharing medications was a significant problem. In particular, when individuals presented to hospital ED with a bag full of medications, it was difficult to determine which medicines were currently prescribed.
Discussion Thirty-one interviews were conducted with PWD, carers and health professionals. Four key issues were identified: diabetes knowledge, diabetes impact, medication knowledge and medication management. These data demonstrated the barriers to and facilitators of effective medication management.
Barriers Numerous barriers to effective medication management were elicited during the interviews, which included cost of medications, language barriers, communication issues, forgetfulness, and poor knowledge and understanding of medications. The high cost of medications was a barrier to achieving optimal medication management, and many PWD and carers commented that there were times when they did not have sufficient money to fill prescriptions when needed. Despite the majority of people residing in the most advantaged socioeconomic areas (quintile 4 or 5), the economic impact of medication costs was felt regardless from which socioeconomic quintile the person resided. Additionally, none of the 11 PWD were employed; 10 were retired and one was receiving government disability sickness benefits. This finding is consistent with previous research that shows an individual’s income level can directly influence medication adherence (Bolton et al. 2002, Leichter & Thomas 2003, Mojtabai & Olfson 2003, Barclay et al. 2007). However, health professionals did not fully appreciate the medicine-related financial burden PWD experience. Language barriers undermined effective medication management by reducing the quantity and quality of information conveyed to PWD. Likewise, poor communication resulted in nonadherence and, consequently, medicationrelated problems (Keller et al. 2008, Ngoh 2009). People with low health literacy often rely on family members or friends to read and relay medication directions (Stewart et al. 1999). A number of PWD relied on their carers to relay or translate information. All PWD were able to © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246
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understand a certain level of English, but their level of health literacy was poor, despite having lived in Australia for an average of forty years. Furthermore, the PWD had a basic level of education, four of 11 PWD had only finished primary school and two had no formal schooling at all. Low levels of education and poor health literacy have previously been shown to be barriers to optimal management of health (Brown et al. 2004, Jack et al. 2012). Despite the fact that forgetfulness was one of the commonest barriers to using medications, the majority of PWD still relied on their memory to take their medications as prescribed. However, carers often had to remind their relative to take their medications. These findings are consistent with past research that shows forgetfulness is one of the most commonly reported reasons that individuals do not adhere to their medication regimens, particularity older people (Col et al. 1990, Houston-Miller et al. 1997, Arabe et al. 1998, Dunbar-Jacob et al. 2000, Dunning & Manias 2005). The reasons many people forget to take their medications are due to people being busy, lack of symptoms or failing memory (Houston-Miller et al. 1997, Arabe et al. 1998, DunbarJacob et al. 2000, Dunning & Manias 2005). A common factor affecting the ability of PWD to self-manage their medications was poor knowledge and understanding of their disease and medications. The interviews revealed PWD and carers only had a very basic knowledge and understanding of diabetes and medications. Many PWD and the carers in the present study could not recall the names of prescribed medications or the indications for their use. Poor medication knowledge is significantly associated with medication nonadherence (Lipton & Bird 1994, Burge et al. 2005), which is a major risk factor for poor outcomes, including medication-related problems. Lack of knowledge about diabetes results in medicationrelated problems (Ciechanowski et al. 2001, Schillinger et al. 2002, Gazmararian et al. 2003, Banerjee et al. 2004, Cavanaugh et al. 2009), and an individual’s risk of having a medication-related problem is increased if carers also have poor knowledge of the disease or medications (Williams et al. 2008). However, poor knowledge and understanding do not only apply to diabetes, PWD in the present study were relatively ignorant about their other health problems such as hypertension and hypercholesterolaemia, and the medications prescribed to treat these conditions. Furthermore, many carers actually relied on the PWD they cared for to provide them with relevant information. The present study suggests that health professionals did recognise their poor knowledge as an important issue affecting medication management. Many health professionals also highlighted the fact that they often had insufficient
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resources such as accessing interpreters outside of business hours to assist PWD. People with diabetes prescribed insulin have to regularly make decisions about their insulin doses based on their blood glucose patterns. Despite the fundamental importance of adjusting the insulin doses according to the blood glucose level, only a few PWD and carers checked blood glucose levels regularly or understood the importance of doing so. Those who did regularly monitor their blood glucose levels relied on how they felt or how the PWD appeared. The limited extent of blood glucose self-monitoring is similar to studies in the USA which showed that between 26–40% of people requiring insulin regularly monitored their blood glucose levels (Harris et al. 1993). Another study suggests blood glucose monitoring is one of the most difficult self-management practices to sustain (Hiscock et al. 2001).
Facilitators Use of resources, interventions or strategies to facilitate effective medication management varied. Some PWD and carers used dose administration aids; as the aids were written in English, as the aids were written in English for those people who had trouble reading English, the aid may not have been effective. However, no PWD or carers reported using an upto-date medication list to assist with appropriate dosing; many relied on their memory to take their medications correctly. Health professionals were concerned about the low use of a current medication list, and they indicated that it was more difficult for them to treat people without an up-todate medication list. However, none of the health professionals actively enabled PWD or carers to obtain or carry a medication list. Past research shows that simple and current medication lists improve medication management and reduce medication errors (Chae et al. 2009, National Prescribing Service; available at: http://www.nps.org.au, accessed 10 October 2010). Other researchers report many benefits of HMRs such as reduced hospital admissions, fewer hospital readmissions, lower mortality rates, increased quality of life and early identification of potential medication-related problems (Stewart et al. 1998a,b, 1999, Graffen et al. 2004, Sorensen et al. 2004). Nevertheless, none of the PWD interviewed had received an HMR, despite many of them meeting the referral criteria. This finding suggests that the current method of identifying people at risk and facilitating referral for a HMR is inadequate or that health professionals are not well informed of the referral criteria. Similarly, initiation of an HMR referral is not part of commonly used diabetes management guidelines, and other Australian studies
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suggest the HMR is currently underused (Australian Commission on Safety & Quality in Health Care 2009). There are a number of limitations to this study. The study was based on interviews conducted at one study site. The experience of barriers to PWD from NESB in other settings such as rural hospitals could be different. Interviews were undertaken with PWD and carers from NESB who were actually able to communicate in English. Other issues could have emerged if individuals without the ability to communicate in English were interviewed. Further research could involve interpreters to explore the medication management practices of people who require interpreters.
Conclusion An important finding was the enormity of the demands on PWD self-managing their disease. While a number of supports are available, the present research indicates that they are often underused. Thus, the findings suggest that strategies to better identify PWD of NESB and improved mechanisms of referral to community-based support services are needed to help them achieve optimal diabetes self-management. To improve medication management, PWD and carers need to be clearly informed about the long-term impact of diabetes and the importance of regular monitoring of the disease, and educated about medications.
Relevance to clinical practice Strategies to better identify PWD and referral to community-based support mechanisms for achieving optimal health management are needed, and PWD and carers need to be better informed about the long-term impact of diabetes and the importance of regular blood glucose monitoring. The findings of the study can be used to develop targeted strategies aimed at improving medication management of diabetes as experienced by people of NESBs.
Acknowledgements The authors acknowledge St Vincent Outpatient Clinic and the people who interviews and also Rosemary Turner, University of Melbourne, for her help and interviews of participants.
Hospital Diabetes participated in the research assistant, in the recruitment
Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ethi© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 2234–2246
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cal_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data; (2) drafting the article or revising it critically for important intellectual content; and (3) final approval of the version to be published.
Funding Australian Research Council Linkage Project Grant LP0455401, and St. Vincent’s Hospital, Melbourne.
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