This is an open-access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/) which permits unrestricted noncommercial use, distribution, and reproduction in any medium, provided the original work is properly cited.
Good glucose control is an indicator of treatment adherence and insulin therapy. However, insulin rejection has become an increasingly concerning phenomenon and is underdiscussed in health modules. The effects of incomplete exploration and suboptimal analysis requirements have led to the problem of insulin rejection, which needs to be identified by considering the broader perceptions of informal caregivers and patients with type 2 diabetes mellitus. Photo-elicitation, a technique that combines images and interviews, has gained traction for in-depth exploration. This study aimed to explore insulin rejection using photo-elicitation in this population.
Methods
This study employed a qualitative phenomenological design. The photo-elicitation interview involved ten photographs, which were taken and discussed narratively. This involved 10 families of informal caregivers and patients with type 2 diabetes mellitus between 20 and 60 years of age as purposive sampling at the Hospital Sultanah Nur Zahirah, Kuala Terengganu. Glycated hemoglobin levels (%) were between 6.3% and 14.8% in patients with type 2 diabetes mellitus. Atlas.ti version 25 and an Excel spreadsheet were used to analyze qualitative data through thematic analysis based on Maslow’s hierarchy of needs.
Results
Four main themes were revealed: (1) financial challenges, (2) public stigma related to insulin therapy, (3) improving self-efficacy for self-action, and (4) improving glycemic levels for quality of life.
Conclusion
Photo-elicitation successfully explored trends in the management of type 2 diabetes mellitus in this population. This study provides insights into the use of needs analyses to create more engaging experiences when designing comprehensive evidence- and need-based interventions.
In general, knowledge of type 2 diabetes mellitus (T2DM) is extensive and at high levels in the community, as evidenced by past studies related to understanding chronic complications [1,2] and knowledge of daily diabetes self-care management skills [3,4]. Meanwhile, there are also differences in the study findings related to these findings, the occurrence of significant problems such as insulin treatment [5], health literacy [3], and food modification for optimal glycemic control [6], which can affect the quality of life in the future [7]. T2DM needs to be investigated; the pathogenesis of T2DM is complex and is a major contributor to increased morbidity and mortality [8,9]. High or low knowledge and skills do not guarantee daily health practices or compliance with T2DM control. An analysis of the global epidemiology of T2DM has supported this statement, where the global prevalence of T2DM is projected to increase to 7,079 individuals per 100,000 by 2030 [10] and 6.7 million deaths worldwide (2021) [7]. This situation reflects a continuous increase in all regions of the world, including low-income countries [11], remote areas where it is difficult to access scheduled treatment, increasing age [12], and declining family socioeconomic statuses [13]. In Malaysia, high treatment costs have been placed on the treatment of T2DM [11,14].
Insulin is a treatment option that has the advantage of better glycemic control at the initial stage (hemoglobin A1C [HbA1C] >6.5%) compared to oral antidiabetic drugs [15,16], especially the control of macrovascular and microvascular complications [17-19]. Oral antidiabetic drugs will be the next treatment step if lifestyle modifications are successful or insufficient, along with insulin injections for controlling glycemic levels. However, the combination of insulin injection methods and oral medications has caused insulin rejection (IR) to become a phenomenon and deviate from the goal of T2DM treatment in these patients, which is aimed at insulin initiation or intensification, known as therapeutic inertia [20,21]. In Malaysia, this problem occurs significantly with the increase in complications of T2DM, namely end-stage diabetes [16,18,22,23]. This phenomenon is known as insulin naivety [17]. This phenomenon involves various healthcare levels, from primary to tertiary healthcare, and requires more in-depth studies, especially in the needs phase, before the design and development phase of a health intervention module. Once insulin has been prescribed, patients must satisfactorily adhere to the regimen. Patients must follow many aspects of insulin therapy; however, without a clear understanding of insulin communication, IR situations occur without further investigation to understand why this occurs repeatedly. Immediate public health and clinical preventive measures are necessary to explore this phenomenon.
For this study, exploration was conducted broadly and specifically by considering the perceptions of the relationships between the two characters in the family system. This considers the findings of past studies, namely, the various contributors to the acceptance of insulin therapy to be studied in more depth, especially between informal caregivers and patients with T2DM [23-26]. Informal caregivers and patients with T2DM form a strong family system that contributes to treatment success through coping mechanisms [27,28]. However, this family system still needs to be studied because the increase in T2DM complications is becoming increasingly worrisome and will affect society in the future. At the same time, researchers want to know the perceptions and challenges often experienced by informal caregivers and patients in daily T2DM management in a dyadic manner involving factors related to IR. Therefore, the objective of this study was to explore IR using photo-elicitation in a dyadic manner between informal caregivers and patients with T2DM as a requirement for module development.
The conceptual framework for this study was based on an analysis of Maslow’s needs hierarchy [29,30] and the theory of dyadic illness management [31] between informal caregivers and patients with T2DM (Figure 1). The selection of the two theories for this study supports the research question and uses Maslow’s hierarchy of needs between caregivers and patients with T2DM. Meanwhile, the dyadic theory acts as a beneficial interdependent function between caregivers and patients with T2DM, such as safety elements that should be followed related to administering insulin injections. To complete the safety elements, caregivers must interact with patients with T2DM through dyadic communication and reasonable medication explanations to obtain a consensus without conflict.
Maslow’s hierarchy consists of five elements of human needs (physiological, safety and security, belonging, esteem, and actualization) that must be achieved in stages by informal caregivers and T2DM patients. However, there is an overlap in these elements [29,32], which means that each need does not have to be fully met and is less emphasized in the care needs of T2DM compared to other non-communicable diseases [33-35]. The framework explains the link between the needs more clearly, exploring the complex phenomena between informal caregivers and patients with T2DM related to IR. The contributing factors that were revealed contributed to the intervention topic and subtopic in the design and development of the intervention module in this study.
Methods
The study was approved by the KPJ Healthcare University (KPJUC/RMC/SON/EC/2023/468) and the Medical Research and Ethics Committee, Ministry of Health, Malaysia (NMRR ID-23-03333-CDI [IIR]) before the study was conducted (date of approval: October 9, 2023).
Study design and sampling
This study was part of a mixed-methods research study. It was conducted to complete phase one, which is the need for analysis before the design and development of an interventional module.
The method used was a qualitative study that adopted a phenomenological design. This method allows for exploring more deeply related phenomena through active reflection [36]. To provide an overview of the phenomenon of reflection on the daily management of T2DM, 10 families (10 informal caregivers and 10 patients) were sampled at Hospital Sultanah Nur Zahirah in Kuala Terengganu (HSNZ KT) [37]. HSNZ KT is the only state hospital in Terengganu that specializes in referral for major complications related to T2DM treatment. The respondents were between 20 and 60 years of age, had been involved in treating and managing T2DM for more than one year as informal caregivers, and had a biological relationship with the patient, or were the patient’s life-partner. Patients with T2DM who defaulted from treatment and were registered as inpatients at the hospital, or who were receiving treatment for complications, were included. This selection was based on obtaining rich data, whether positive or negative, from the respondents, and theoretical saturation was reached [38].
Photo-elicitation interview procedures
Visual methodologies were the main methods used in this study phase, which combined photos and interview sessions. Specifically, the photo-elicitation interview (PEI) method generates verbal discussions to create data and knowledge based on past events and reflection on photos in harmony [39,40]. The researcher-driven (semi-structured/structured) method was chosen to obtain more specific explorations based on research questions compared to the participant-driven (open) and participant-driven (semi-structured) methods [41,42]. The PEI method provides the accuracy and validity of the information collected in each interview session through reflections from respondents [40,41] and further narrates their understanding of the phenomena and contextual issues of the study [40,42].
Research instruments
To produce the best data from the respondent information, the interview questions were designed based on the research questions and objectives of (1) a literature review for under-researched and unexplored research related to IR, (2) the Consolidated Criteria for Reporting Qualitative Research (COREQ) for making an interview protocol guide [43], and (3) a step-by-step PEI flow [44,45]. The interview protocol was divided into (1) demographic, (2) photo, and (3) IR semi-structured in-depth interview questions (Table 1). Content validity and reliability were assessed by two nursing experts in the field of diabetes management to ensure that this interview session met the criteria for the latest clinical problems. The experts reviewed each correction to obtain approval of the interview protocol. The Cohen Kappa Index was 0.71, and the significant agreement was 0.035 [46]. Back-to-back translations were performed from English to Malay, because most respondents communicated in Malay.
Respondent selection
The selection of inclusion criteria in this study included informal caregivers who lived with the patients and had experience managing T2DM and insulin injections for at least a year. The informal caregivers were accepted if they were spouses or family members. Only one informal caregiver per patient was included in the study. Patients with T2DM who were receiving treatment and were registered at the HSNZ KT at the time of the study were included. Patients with T2DM must have had at least a year of experience using insulin injections, defaulting treatment, or missing insulin medication treatment, and have been able to cooperate in this study.
Data collection and analysis method
Overall, this study was conducted from October 2023 to January 2024 and involved 10 families, with 10 photos of each family related to IR. This study required participants to consent twice, namely informed consent for participation and consent for photography (HSNZ PER/Photo/2016). The researcher obtained consent for photography, as provided in the hospital policy, from the respondents before taking the photos. The photos did not reveal the respondents’ identities to maintain confidentiality. The researcher selected photos to avoid duplicate images, and the photos were shown to the caregiver and the patient with T2DM before signing the photography consent. If this had not been agreed upon, both respondents would have dropped out.
The interview session required 30 to 45 minutes for each family and was recorded using a voice recorder owned by the researcher. Field notes were also taken to ensure that no information was missing, and body language and facial expressions were considered throughout the session. During the session, the patient’s comfort was prioritized because the patient was still receiving treatment, and the researcher avoided sensitive issues between the informal caregiver and the patient. The respondents had the right to read the completed and signed transcripts as consent for this study.
Transcripts from the informal caregiver and the patient with T2DM were reviewed and compared using a voice recorder and notes. The transcripts were back-translated from Malay into English for thematic analysis [47-49]. Each theme formed between the photos and semi-structured interviews underwent comparative thematic processing with relevant quotations and codes before the main theme was formed. In addition, two experts were involved in the process of forming this main theme to increase the credibility and review the findings and initial interpretations of confirmability row data [50,51]. Atlas.ti version 25 (ATLAS.ti Scientific Software Development GmbH) and an Excel spreadsheet 2021 version (Microsoft Corp.) were used to generate the themes of this study, which continued until it reached a saturation point, based on Ose [52] and a video guide by Harold Peach [53]. The following is a brief description of the step-by-step PEI flow that was discussed with the researcher and two experts in this study (Table 2) [44,45].
Results
Characteristics of participant informal caregivers and patients with T2DM
This study included 10 informal caregivers and 10 patients with T2DM (details in Table 3). The highest HbA1C reading was 14.8%, and most patients had experienced a hypoglycemic event after a previous injection. Four families also reported having experienced needle-prick accidents during the insulin injection process. Several conflicts were experienced between the caregivers and the patients, especially between husbands and wives, compared with family members who were asked to discuss the conflicts separately from the patients. This was to avoid misunderstandings and not give a negative impression to the patients with T2DM who are going through the treatment process. However, the patients still cooperated during the interview sessions.
Thematic analysis finding
The analysis revealed four main themes: (1) financial challenges, (2) public stigma related to insulin therapy, (3) improving self-efficacy towards self-action education, and (4) improving glycemic levels for quality of life. The following section explains the main themes and subthemes, along with photos that have been discussed in relation to IR among informal caregivers and patients with T2DM (Figure 2). Table 4 presents the results of the thematic analysis of IR.
Financial challenges
The main theme raised by informal caregivers and patients with T2DM, and the most frequently discussed theme, was the purchase of insulin pen needles, lancets, and glucose strips. Although the prices of these items are stable, the additional costs make them burdensome, especially for respondents who earn daily wages. This theme involves the physiological need for safety on Maslow’s hierarchy.
Psychological financial thinking
Financial concerns were a significant cause of psychological distress among the respondents. This often occurs in families with low incomes and multiple comorbidities, and only places responsibility on one side. The following quote was provided by a respondent:
“Initially, I could afford to buy insulin needles, but for long-term use, I spent RM15,000 a year on my father’s (patient) treatment.” (F3: informal caregiver, 26-year-old)
To minimize the use of insulin needles, some patients continue using them until they experience pain, instead of discarding the needle immediately after use.
“I usually use needles until it hurts, I want to save money, I have other payments…at the same time, I need a glucose testing device.” (F10: T2DM patient, 35-year-old, HbA1C=11.2%)
Getting healthcare support
The researcher was informed that the government health clinics sold insulin needles at affordable prices. This is one of the alternatives that must be provided. The following quote was provided by a respondent:
“The service of selling these needles is also good; this makes it easier for me to pay for transportation costs; it is more economical.” (F7: informal caregiver, 47-year-old)
However, this type of care service is negatively perceived. In addition to the sale of insulin needles, glucose strips were not supplied or sold because of their high prices.
“I don’t understand why the doses of medicine given are never the same (feeling angry)… The doctor wants a good reading, but the supply of medicine is small…it’s better not to have to inject medicine.” (F7: T2DM patient, 49-year-old, HbA1C=11.0%)
Public stigma related to insulin therapy
This situation occurs when patients consider the negative views of those around them when managing their T2DM, especially when they are outside. The researcher explained that they felt embarrassed, did not know how to manage this situation outside, and needed a closed area. This theme involved the need for self-esteem and belonging in Maslow’s hierarchy.
Poor family support regarding insulin treatment
Respondents also understood that the role of family members in insulin management had not been taken seriously, compared to considering opinions and suggestions from outsiders without health-related knowledge. The following quote was provided by a respondent:
“My wife always tells me to reduce my insulin injections because she wants me to try other treatments…the effect on me now.” (F6: T2DM patient, 39-year-old, HbA1C=12.6%)
Some informal caregivers stated that they received resources from outsiders, saying that the ingredients in insulin are prohibited and will damage organs.
“There are resources on the internet and friends…but the feeling of apprehension makes it better to take other medications and treatments.” (F3: informal caregiver, 26-year-old)
Improving self-efficacy towards self-action
Some respondents exhibited high self-efficacy but low self-action and vice versa. This inconsistency leads to internal resistance and challenges that they are hesitant to accept as their responsibilities. This theme is related to the need for safety on Maslow’s hierarchy.
Insulin injection knowledge and skill
Some caregivers did not know the need for insulin injections, not only the dose, but also the type of medication. Meanwhile, patients with T2DM were less aware of the effects of complications due to negligence on their part. The following quote was provided by a respondent:
“I am the one who collects my mother’s (patient) insulin medication supplies from the clinic, but I do not know the function; I only know the injection times, day and night.” (F9: informal caregiver, 31-year-old)
One patient also shared that the effects of the injection were increasingly worse bruising, which caused IR, and he had experienced diabetic ketoacidosis during his admission to the ward.
“I have practised the correct injection method. I have been educated by the diabetes educator, but this bruise makes me not want to be injected.” (F9: informal caregiver, 31-year-old)
Education rejection
Unmet needs and desires, combined with a lack of understanding of the purpose of treatment over a long period, have caused health education to be ignored. This situation occurs when healthcare professionals are unable to handle a case of T2DM referral, especially for families who have high treatment demands, but who are not aware of their requirement for improved education.
“In my opinion, they (healthcare professionals) need to know how to differentiate the needs of a person’s illness. Not all individuals are the same, the same education… in my opinion, they lack experience.” (F8: informal caregiver, 55-year-old)
“I once attended health education with my father (patient)… too many taboos…caused my father to feel bored… maybe the method of information delivery needs to be corrected.” (F3: informal caregiver, 26-year-old)
Time requirement
This subtheme extends to the issue of rejection of education. Many individuals receive health education at inappropriate times or in inappropriate situations. The following quote was provided by a respondent:
“This is the second time I have been admitted to the ward due to complications; I received explanations…but at that time, it was after surgery… I was still sick.” (F7: T2DM patient, 49-year-old, HbA1C=11.0%)
This was supported by another respondent, stating:
“The gap between dates is really long, 3 months…in the meantime, I need health support….” (F3: informal caregiver, 26-year-old)
In addition to this subtheme being linked to health education, the following timing situation was related to medication use during working hours.
“I am in business. I am worried that after the injection I will experience hypoglycemia…how should I do business?” (F2: T2DM patient, 58-year-old, HbA1C=12.8%)
Improve glycemic control for quality of life
Most respondents recognized and understood the importance of improving their health and possessed basic knowledge on how to achieve a better quality of life. However, they struggle with long-term management and find it difficult to take responsibility for past issues, hindering their ability to prevent similar problems in the future and develop effective coping mechanisms. This theme highlights the need for self-esteem and self-actualization as described in Maslow’s hierarchy of needs.
Trustworthiness in daily T2DM management practices
Most patients shared that they adhered to good T2DM management practices. However, this situation is not significant given the complications currently experienced. During this session, caregivers and patients had different opinions and ideas regarding daily T2DM practices. As follows:
“I am not surprised if my husband (patient) is always admitted to the ward. My husband always tells the doctor that he takes his medicine... actually, he doesn’t... at home, there is a lot of medicine stock.” (F1: informal caregiver, 54-year-old)
“You (caregiver) don’t know anything about this diabetes medicine (firm and angry voice).” (F1: T2DM patient, 58-year-old, HbA1C=12.2%)
This statement was supported by other respondents.
“Actually, I don’t understand why patients need to be injected with insulin... I just follow the patient’s wishes... when the doctor asks, I just tell the patient to take the medicine.” (F3: informal caregiver, 26-year-old)
“The doctor just likes to increase my insulin dose from 26 units to 38 units… what if I’m hypoglycemic… the doctor gave me the wrong dose of medicine (firm and protesting voice).” (F6: T2DM patient, 39-year-old, HbA1C=12.6%)
Untruthfulness has also been identified as a contributor to increasing therapeutic inertia, at the same time that the supply of insulin continues but is not used by the patient.
Change of attitudes towards problems
Attitude in the daily practice of T2DM management is key to patient safety and reducing the burden on informal caregivers. The IR situation is an attitude taken for granted without considering the effects of future complications. A positive attitude can lead to better problem-solving. The following is a quote from a respondent:
“I usually don’t inject insulin when I feel dizzy…I don’t have a glucose machine…I know I’m hypoglycemic.” (F1: T2DM patient, 58-year-old, HbA1C=12.2%)
However, some respondents gave positive statements:
“I feel more enthusiastic when the HbA1C readings have decreased; I started to understand that insulin injections are necessary to reduce complications.” (F4: T2DM patient, 49-year-old, HbA1C=6.3%)
Adherence to insulin treatment was also identified to have been formed through a sense of responsibility to the family.
“I need to change, I am still young… I have a family to take care of.” (F10: T2DM patient, 35-year-old, HbA1C=11.2%)
Responsibility for complication prevention
This theme was based on patients’ desire for change. However, more focus on caregivers is required to ensure long-term compliance with responsibilities. The following positive statements were shared:
“It is indeed difficult to jointly shoulder responsibility for the patient, but I will try so that this complication will not happen again.” (F8: informal caregiver, 55-year-old)
However, some respondents still tried to place the responsibility on others.
“My toe amputation treatment was not done correctly… there is still a bacterial infection…it was the doctor’s fault for not treating me properly.” (F2: T2DM patient, 58-year-old, HbA1C=12.8%)
Discussion
In this study, the PEI method successfully explored IR among informal caregivers and patients with T2DM when the patients were receiving in-hospital treatment. However, several issues arose during the interview sessions, such as a history of conflict, participants not taking adequate responsibility for their own disease, and a lack of agreement on forming coping mechanisms together. A deficiency in collaboration between caregivers and patients with T2DM will cause disharmony and critical reflexivity. However, researchers have taken steps to provide privacy for each individual’s information based on the surrounding situation.
Throughout the session, the patients were stable, and accurate information and cooperation were provided between the caregivers and the patients.
A major exploration of this situation shows that the needs of patients cannot be met, and IR is caused by the disconnection of personal and treatment needs, which are very important to patients at the initial stage and are neglected. Basic needs are essential for insulin injection treatment preparation, especially when it is beyond the control of the healthcare professionals and related to pain issues, perceptions of incorrect treatment, and disruption of daily work [54]. Maslow’s hierarchy has been used as a reference for needs; however, it is challenging to meet physiological and safety needs. This causes self-actualization to be incomplete [30]. This situation is further compounded by the disharmony of the relationship between informal caregivers and patients with T2DM in the treatment of T2DM, especially IR, which is increasingly happening regardless of its risks.
Family responsibility, needs, and comprehensive health education are strategies for overcoming this problem. This begins with the current exploration techniques that still need improvement in individual role reform and the need for analysis. This study aimed to develop new interventions for family well-being to improve full-scale evaluations [55,56]. Financial challenges are often discussed in families, especially in patients who need to purchase glucose strips, needles, insulin medication, and pay for the treatment of comorbidities [57,58]. This is compounded by severe stigmas related to the incorrect perceptions of the goals of insulin therapy, which has been discussed less [59]. Feelings of stigmatization have affected the management of T2DM by avoiding questions from friends and feeling embarrassed about performing glucose checks and insulin injections in public. This feeling is due to fear of judgment or blame, and the importance of maintaining friendships [60].
Meanwhile, improving self-efficacy for taking action is challenging, as individuals may possess knowledge but lack the motivating factors needed to act. This situation must be viewed realistically to increase self-empowerment by creating and implementing self-management through proper methods and support from health interventions [61]. Therefore, the interdependent method is one of the methods that need to be highlighted now in treating T2DM, especially at the initial diagnosis in primary or tertiary care [62]. The last theme is improving glycemic levels for the quality of life, which has often been discussed in the literature. Trustworthiness has been identified as a success factor for enhancing the quality of life, increasing self-efficacy, and reducing harmful family involvement. Healthcare professionals now need to emphasize their responsibility so that inertia therapy does not occur in healthcare and programs, and can be performed according to patients’ needs and actual problems.
This finding is supported by studies related to insulin therapy, in which patients reported difficulty in accepting insulin therapy because it is considered a lifelong therapy for patients in primary healthcare clinics in Singapore [26]. Meanwhile, in the United Kingdom, differences in views on insulin and health are related to feelings of discouragement, frustration, and anxiety if given the responsibility between caregivers and patients with T2DM to administer insulin injections at home [63].
Overall, the findings of this study’s needs analysis are meaningful as they highlight possible solutions for new interventional strategies among healthcare professionals. Therefore, the results of this study will be used as themes and subthemes for the design and development of an interventional e-module in Phase 2 (mixed-method study) of subsequent research related to the interdependent method involving informal caregivers and patients with T2DM.
In conclusion, to the best of our knowledge, this is the first qualitative study involving a combination of PEIs and semi-structured interviews to provide a new window for caregivers and patients with T2DM to carry out daily diabetes self-care management activities in Malaysia. This study also aimed to prevent the potential crisis of insulin shortage along with the IR phenomenon, in which the insulin supply provided is not fully used by the patient. The results of this study provide benefits and awareness to caregivers and patients with T2DM regarding the importance of insulin treatment costs. This is because, in Malaysia, government hospitals provide insulin at low and free fees, especially when this study was conducted.
Article Information
Conflict of interest
No potential conflict of interest relevant to this article was reported.
Conceptual framework on need of analysis for explore insulin rejection. T2DM, type 2 diabetes mellitus.
Figure. 2.
(A–F) Thematic analysis: photo elicitation interviews for insulin rejection.
Table 1.
Interview protocol for photo-elicitation interviews
Question part
Question
Opening question
Are the caregiver and patient always together?
Main question (follow-up and probing)
Photo prompt: Show a photo (insulin pen)
Question: How can you relate this photo to taking insulin injections?
Photo prompt: Show a photo glucose charting during ward admission
Question: Can you explain the importance of insulin and good blood sugar control?
Question: What were your feelings when your physician decided to start insulin therapy for you?
Question: Do you often face problems related to food or drink?
Question: Have you ever improved your knowledge and skills in insulin use?
Closing question (ending)
Is there anything else we can share?
Thank you.
Table 2.
Step-by-step photo‐elicitation interview flow
Stage
Procedures
Purpose
Review by
1
Epistemological decision: researcher-driven
More structured and research question based
Tengku Mohd Mizwar T Malek and Aini Ahmad
2
Participant briefing
Establishing a relationship through written consent and understanding of the content of the image.
Tengku Mohd Mizwar T Malek
3
Photos have been prepared by the researcher to be interviewed (move directly to step 4)
Facilitate the patient during the acute phase (in treatment).
Tengku Mohd Mizwar T Malek
Select photo for focusing prompt.
4
Interviews
Creating interview guide that contextualize photo selected.
Tengku Mohd Mizwar T Malek and Aini Ahmad
Develop understanding of individual roles and events that have been experienced when outside the health area.
5
Analysis
Through photos, data was collected through interview sessions, coding, themes and subtheme are formed.
Tengku Mohd Mizwar T Malek and Aini Ahmad
Atlas.ti version 25 and Excel spreadsheet software was use.
6
Dissemination
Discussion with creative dissemination and positive combination of themes that can be used for intervention module formation activities.
Tengku Mohd Mizwar T Malek, Puziah Yusof, and Aini Ahmad
Table 3.
Demographic data of informal caregivers and patients with T2DM
Family
Informal caregivers
T2DM patients
Age (y)
Relationship
Age (y)
T2DM duration (mo)
HbA1C (%)
Hypoglycemic event
Needle prick event
F1
54
Wife and husband
58
10
12.2
Y
N
F2
56
Wife and husband
58
11
12.8
Y
N
F3
26
Son and father
56
10
12.0
Y
N
F4
47
Wife and husband
49
12
6.3
Y
Y
F5
22
Daughter and father
58
15
13.0
Y
Y
F6
35
Wife and husband
39
8
12.6
Y
N
F7
47
Wife and husband
49
10
11.0
Y
N
F8
55
Husband and wife
50
16
10.3
Y
N
F9
31
Son and mother
60
10
14.8
Y
Y
F10
28
Wife and husband
35
5
11.2
Y
Y
T2DM, type 2 diabetes mellitus; HbA1C, hemoglobin A1C; Y, yes; N, no.
Table 4.
Thematic analysis results
Theme
Sub theme
Quote
Financial challenges
Psychological financial thinking
“I am no longer working; I only rely on my children for treatment expenses (showing a sad face).” (F5: T2DM patient, 58-year-old, HbA1C=13.0%)
Getting healthcare support
“I only expect to buy insulin needles at health clinics; in other places, they are sold at too high.” (F7: T2DM patient, 49-year-old, HbA1C=11.0%)
Public stigma related to insulin therapy
Poor family support about insulin medication
“I want the best…it’s not wrong to try.” (F6: informal caregiver, 35-year-old)
Improving self-efficacy to self-action
Insulin injection knowledge to good skill
“I feel like the doctor really doesn’t understand my wishes, I don’t want the injection…this was the injection that causes swelling and hardening.” (F9: informal caregiver, 31-year-old)
Education rejection
“Times change, maybe the way health education is done needs to change too, the current way is not suitable.” (F10: T2DM patient, 35-year-old, HbA1C=11.2%)
Time requirement
“The gap between follow-up treatment dates really takes a long time… there should be a session between those dates’ (F2: T2DM patient, 58-year-old, HbA1C=12.8%)
Improve glycemic level for quality of life
Trustworthiness in daily T2DM management practices
‘I don’t want to feel hypoglycemic… I’m not comfortable… when I’m at home if I feel the need or remember, I’ll inject insulin.” (F6: T2DM patient, 39-year-old, HbA1C=12.6%)
Change of attitude towards problems
“hrm…why want to control eating? There is medicine for me, just prick it…then the glucose will go down.” (F2: T2DM patient, 58-year-old, HbA1C=12.8%)
Responsibility for complication prevention
“Now I understand, these insulin injections are not forever, I will try to stay healthy, to stop taking these insulin injections.” (F4: T2DM patient, 49-year-old, HbA1C=6.3%)
T2DM, type 2 diabetes mellitus; HbA1C, hemoglobin A1C.
References
1. Blaum C, Cigolle CT, Boyd C, Wolff JL, Tian Z, Langa KM, et al. Clinical complexity in middle-aged and older adults with diabetes: the Health and Retirement Study. Med Care 2010;48:327-34.
2. Kifle ZD, Adugna M, Awgichew A, Chanie A, Sewnet G, Asrie AB. Knowledge towards diabetes and its chronic complications and associated factors among diabetes patients in University of Gondar comprehensive and specialized hospital, Gondar, Northwest Ethiopia. Clin Epidemiol Glob Health 2022;15:101033.
3. Abdallah SM, Ayoub AI, Makhlouf MM, Ashour A. Diabetes knowledge, health literacy and diabetes self-care among older adults living with diabetes in Alexandria, Egypt. BMC Public Health 2024;24:2848.
5. Shrivastva A, Phadnis S, Rao K, Gore M. A study on knowledge and self-care practices about diabetes mellitus among patients with type 2 diabetes mellitus attending selected tertiary healthcare facilities in coastal Karnataka. Clin Epidemiol Glob Health 2020;8:689-92.
6. Ahmed S, Ripon MS, Islam MF, Ullah A, Sultan S, Sajid M, et al. Association of dietary intake and nutrition knowledge with diabetes self-management behavior among Bangladeshi type 2 diabetes mellitus adults: a multi-center cross-sectional study. Endocr Metab Sci 2024;14:100156.
7. Ferreira PL, Morais C, Pimenta R, Ribeiro I, Amorim I, Alves SM, et al. Knowledge about type 2 diabetes: its impact for future management. Front Public Health 2024;12:1328001.
8. Lu X, Xie Q, Pan X, Zhang R, Zhang X, Peng G, et al. Type 2 diabetes mellitus in adults: pathogenesis, prevention and therapy. Signal Transduct Target Ther 2024;9:262.
9. Wang B, Fu Y, Tan X, Wang N, Qi L, Lu Y, et al. Assessing the impact of type 2 diabetes on mortality and life expectancy according to the number of risk factor targets achieved: an observational study. BMC Med 2024;22:114.
10. Khan MA, Hashim MJ, King JK, Govender RD, Mustafa H, Al Kaabi J, et al. Epidemiology of type 2 diabetes: global burden of disease and forecasted trends. J Epidemiol Glob Health 2020;10:107-11.
11. Butt MD, Ong SC, Rafiq A, Kalam MN, Sajjad A, Abdullah M, et al. A systematic review of the economic burden of diabetes mellitus: contrasting perspectives from high and low middle-income countries. J Pharm Policy Pract 2024;17:2322107.
12. Akhtar S, Nasir JA, Ali A, Asghar M, Majeed R, Sarwar A, et al. Prevalence of type-2 diabetes and prediabetes in Malaysia: a systematic review and meta-analysis. PLoS One 2022;17:e0263139.
13. Darvishi A, Nikkhah A, Mahmudimanesh M, Balajam NZ, Shafiee G, Heshmat R, et al. Socioeconomic inequalities in type 2 diabetes mellitus: a study based on a population-based survey in Iran. BMC Public Health 2024;24:926.
14. Feisul IM, Azmi S, Mohd Rizal AM, Zanariah H, Nik Mahir NJ, Fatanah I, et al. What are the direct medical costs of managing type 2 diabetes mellitus in Malaysia? Med J Malaysia 2017;72:271-7.
15. Clinical Practice Guidelines Development Group. Clinical Practice Guidelines (CPG): management of type 2 diabetes mellitus. 6th ed. CPG Secretariat; 2020.
16. Supparamaniam B, Safran NA, Ruzalle NH, Song LY, Idris A, San LL, et al. Perceptions of type 2 diabetes mellitus patients towards insulin therapy and willingness to accept insulin therapy at the public health clinics in South Seberang Perai District, Malaysia. Pharm Res Rep 2021;4:29-37.
17. Chen YY, Lin YJ, Chong E, Chen PC, Chao TF, Chen SA, et al. The impact of diabetes mellitus and corresponding HbA1c levels on the future risks of cardiovascular disease and mortality: a representative cohort study in Taiwan. PLoS One 2015;10:e0123116.
18. Chen LL, Yaacob S, Ming TK. Insulin therapy refusal among insulin-naive type II diabetes mellitus patients in Segamat. Mal J Med Health Sci 2022;18:71-5.
19. Mansour A, Mousa M, Abdelmannan D, Tay G, Hassoun A, Alsafar H, et al. Microvascular and macrovascular complications of type 2 diabetes mellitus: exome wide association analyses. Front Endocrinol (Lausanne) 2023;14:1143067.
20. Andreozzi F, Candido R, Corrao S, Fornengo R, Giancaterini A, Ponzani P, et al. Clinical inertia is the enemy of therapeutic success in the management of diabetes and its complications: a narrative literature review. Diabetol Metab Syndr 2020;12:52.
21. Gavin JR, Abaniel RM, Virdi NS. Therapeutic inertia and delays in insulin intensification in type 2 diabetes: a literature review. Diabetes Spectr 2023;36:379-84.
22. Lee YK, Lee PY, Ng CJ. A qualitative study on healthcare professionals’ perceived barriers to insulin initiation in a multi-ethnic population. BMC Fam Pract 2012;13:28.
23. Zakaria N, Baskaran N, Lim WL. Perception towards insulin therapy and factors related to insulin refusal among insulin naive type 2 diabetes mellitus patients in primary care clinics PKD Lipis. J Pharm 2021;1:70-8.
24. Abu Hassan H, Tohid H, Mohd Amin R, Long Bidin MB, Muthupalaniappen L, Omar K, et al. Factors influencing insulin acceptance among type 2 diabetes mellitus patients in a primary care clinic: a qualitative exploration. BMC Fam Pract 2013;14:164.
25. Hassali MA, Ching MW, Yusoff ZM, Hussein Z, Alrasheedy AA, Al-Tamimi SK, et al. ‘Why I do not want to take insulin shots’: findings from a qualitative study among diabetic patients in Malaysia. J Public Health 2014;22:3-11.
26. Liu C, De Roza J, Ooi CW, Mathew BK, et al. Impact of patients’ beliefs about insulin on acceptance and adherence to insulin therapy: a qualitative study in primary care. BMC Prim Care 2022;23:15.
27. Azizah F, Sansuwito T. Family support in improving quality of life of diabetes mellitus sufferer: literature review. Malays J Med Health Sci 2024;20:200.
28. Mphasha MH, Mothiba TM, Skaal L. Family support in the management of diabetes patients’ perspectives from Limpopo province in South Africa. BMC Public Health 2022;22:2421.
29. Howell CR, Harada CN, Fontaine KR, Mugavero MJ, Cherrington AL. Perspective: acknowledging a hierarchy of social needs in diabetes clinical care and prevention. Diabetes Metab Syndr Obes 2023;16:161-6.
32. Henwood BF, Derejko KS, Couture J, Padgett DK. Maslow and mental health recovery: a comparative study of homeless programs for adults with serious mental illness. Adm Policy Ment Health 2015;42:220-8.
34. Wang M, Liu Y, Wang C, Wang X. The effect of Maslow’s theory-based case management model on the care of stroke patients. Am J Transl Res 2023;15:4932-41.
35. Xu JX, Wu LX, Jiang W, Fan GH. Effect of nursing intervention based on Maslow’s hierarchy of needs in patients with coronary heart disease interventional surgery. World J Clin Cases 2021;9:10189-97.
39. Glaw X, Inder K, Kable A, Hazelton M. Visual methodologies in qualitative research: autophotography and photo elicitation applied to mental health research. Int J Qual Methods 2017;16:1609406917748215.
41. Kyololo OB, Stevens BJ, Songok J. Photo-elicitation technique: utility and challenges in clinical research. Int J Qual Methods 2023;22:16094069231165714.
42. Regoczi D, Shanmugam S. Methodological considerations and reflection on using online photo-elicitation techniques to explore students’ professional doctorate journey. Int J Res Method Educ 2024;47:246-59.
43. Tong A, Sainsbury P, Craig J. Consolidated Criteria for Reporting Qualitative Research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007;19:349-57.
44. Bates EA, McCann JJ, Kaye LK, Taylor JC. “Beyond words”: a researcher’s guide to using photo elicitation in psychology. Qual Res Psychol 2017;14:459-81.
45. Wang AH. “I took the photograph just to show you a little bit of perspective”: photo-elicitation interviewing with family caregivers in the dementia context. FQS 2023;24:Article 7.
47. Bako KR, Mohammadnezhad M, Sika-Paotonu D, Sime S, Signal L. Diabetes cam: an objective methodology to study diabetes self-management. Am J Prev Med 2024;66:909-13.
49. Joy P, Mann L, Blotnicky K. Identification of healthy eating and active lifestyle issues through photo elicitation. Can J Diet Pract Res 2014;75:152-6.
51. Nowell LS, Norris JM, White DE, Moules NJ. Thematic analysis: striving to meet the trustworthiness criteria. Int J Qual Methods 2017;16:1609406917733847.
54. Negash Z, Tadiwos A, Urgessa EM, Gebretekle GB, Abebe E, Fentie AM, et al. Insulin injection practice and health related quality of life among individuals with diabetes at Tikur Anbessa Specialized Hospital, Ethiopia: a cross-sectional study. Health Qual Life Outcomes 2023;21:38.
55. Hallingberg B, Turley R, Segrott J, Wight D, Craig P, Moore L, et al. Exploratory studies to decide whether and how to proceed with full-scale evaluations of public health interventions: a systematic review of guidance. Pilot Feasibility Stud 2018;4:104.
56. Rendle KA, Abramson CM, Garrett SB, Halley MC, Dohan D. Beyond exploratory: a tailored framework for designing and assessing qualitative health research. BMJ Open 2019;9:e030123.
58. Gao CC, Espinoza Suarez NR, Toloza FJ, Malaga Zuniga AS, McCarthy SR, Boehmer KR, et al. Patients’ perspective about the cost of diabetes management: an analysis of online health communities. Mayo Clin Proc Innov Qual Outcomes 2021;5:898-906.
59. Aslan EO, Toygar I, Feyizoglu G, Polat S, Eti Aslan F. Relationship between the insulin use and stigma in type 2 diabetes mellitus. Prim Care Diabetes 2023;17:373-8.
61. Sukartini T, Nursalam N, Pradipta RO, Ubudiyah M. Potential methods to improve self-management in those with type 2 diabetes: a narrative review. Int J Endocrinol Metab 2023;21:e119698.
62. van Puffelen AL, Heijmans MJ, Schellevis FG, Nijpels G, Rijken M. Improving self-management of people with type 2 diabetes in the first years after diagnosis: development and pilot of a theory-based interactive group intervention. SAGE Open Med 2019;7:2050312119847918.
63. Langerman C, Forbes A, Robert G. A qualitative study of the experiences of insulin use by older people with type 2 diabetes mellitus. BMC Prim Care 2024;25:180.
Exploring insulin rejection through photo-elicitation among informal caregivers and patients with type 2 diabetes mellitus
Question part
Question
Opening question
Are the caregiver and patient always together?
Main question (follow-up and probing)
Photo prompt: Show a photo (insulin pen)
Question: How can you relate this photo to taking insulin injections?
Photo prompt: Show a photo glucose charting during ward admission
Question: Can you explain the importance of insulin and good blood sugar control?
Question: What were your feelings when your physician decided to start insulin therapy for you?
Question: Do you often face problems related to food or drink?
Question: Have you ever improved your knowledge and skills in insulin use?
Closing question (ending)
Is there anything else we can share?
Thank you.
Stage
Procedures
Purpose
Review by
1
Epistemological decision: researcher-driven
More structured and research question based
Tengku Mohd Mizwar T Malek and Aini Ahmad
2
Participant briefing
Establishing a relationship through written consent and understanding of the content of the image.
Tengku Mohd Mizwar T Malek
3
Photos have been prepared by the researcher to be interviewed (move directly to step 4)
Facilitate the patient during the acute phase (in treatment).
Tengku Mohd Mizwar T Malek
Select photo for focusing prompt.
4
Interviews
Creating interview guide that contextualize photo selected.
Tengku Mohd Mizwar T Malek and Aini Ahmad
Develop understanding of individual roles and events that have been experienced when outside the health area.
5
Analysis
Through photos, data was collected through interview sessions, coding, themes and subtheme are formed.
Tengku Mohd Mizwar T Malek and Aini Ahmad
Atlas.ti version 25 and Excel spreadsheet software was use.
6
Dissemination
Discussion with creative dissemination and positive combination of themes that can be used for intervention module formation activities.
Tengku Mohd Mizwar T Malek, Puziah Yusof, and Aini Ahmad
Family
Informal caregivers
T2DM patients
Age (y)
Relationship
Age (y)
T2DM duration (mo)
HbA1C (%)
Hypoglycemic event
Needle prick event
F1
54
Wife and husband
58
10
12.2
Y
N
F2
56
Wife and husband
58
11
12.8
Y
N
F3
26
Son and father
56
10
12.0
Y
N
F4
47
Wife and husband
49
12
6.3
Y
Y
F5
22
Daughter and father
58
15
13.0
Y
Y
F6
35
Wife and husband
39
8
12.6
Y
N
F7
47
Wife and husband
49
10
11.0
Y
N
F8
55
Husband and wife
50
16
10.3
Y
N
F9
31
Son and mother
60
10
14.8
Y
Y
F10
28
Wife and husband
35
5
11.2
Y
Y
Theme
Sub theme
Quote
Financial challenges
Psychological financial thinking
“I am no longer working; I only rely on my children for treatment expenses (showing a sad face).” (F5: T2DM patient, 58-year-old, HbA1C=13.0%)
Getting healthcare support
“I only expect to buy insulin needles at health clinics; in other places, they are sold at too high.” (F7: T2DM patient, 49-year-old, HbA1C=11.0%)
Public stigma related to insulin therapy
Poor family support about insulin medication
“I want the best…it’s not wrong to try.” (F6: informal caregiver, 35-year-old)
Improving self-efficacy to self-action
Insulin injection knowledge to good skill
“I feel like the doctor really doesn’t understand my wishes, I don’t want the injection…this was the injection that causes swelling and hardening.” (F9: informal caregiver, 31-year-old)
Education rejection
“Times change, maybe the way health education is done needs to change too, the current way is not suitable.” (F10: T2DM patient, 35-year-old, HbA1C=11.2%)
Time requirement
“The gap between follow-up treatment dates really takes a long time… there should be a session between those dates’ (F2: T2DM patient, 58-year-old, HbA1C=12.8%)
Improve glycemic level for quality of life
Trustworthiness in daily T2DM management practices
‘I don’t want to feel hypoglycemic… I’m not comfortable… when I’m at home if I feel the need or remember, I’ll inject insulin.” (F6: T2DM patient, 39-year-old, HbA1C=12.6%)
Change of attitude towards problems
“hrm…why want to control eating? There is medicine for me, just prick it…then the glucose will go down.” (F2: T2DM patient, 58-year-old, HbA1C=12.8%)
Responsibility for complication prevention
“Now I understand, these insulin injections are not forever, I will try to stay healthy, to stop taking these insulin injections.” (F4: T2DM patient, 49-year-old, HbA1C=6.3%)
Table 1. Interview protocol for photo-elicitation interviews
