|Home | About | Journals | Submit | Contact Us | Français|
The aim was to explore the impact of diabetes-related technology to ensure that such devices are used in a way that returns maximum benefit from a medical and psychological perspective.
Spouses and caregivers of people with type 1 diabetes were invited to complete an online questionnaire about their experiences with diabetes technologies used by their family members. Participants were recruited via the Glu online community website. Questions explored impact on daily living, frequency and severity of hypoglycemia, and diabetes-related distress.
In all, 100 parents/caregivers and 74 partners participated in this survey. Average (mean) duration of living with a person with type 1 diabetes was 16 years (SD = 13) for partners, with duration of diabetes for children being 4.2 ± 3.2 years. Average duration of current therapy was 8.3 ± 7.3 years for adults and 3.4 ± 2.9 years for children. Of the participants, 86% partners and 82% parents/caregivers reported diabetes technology had made it easier for their family members to achieve blood glucose targets. Compared to partners, parents/caregivers reported more negative emotions (P < .001) and decreased well-being (P < .001) related to their family members type 1 diabetes. Diabetes-related distress was common, as was sleep disturbance associated with device alarms and fear of hypoglycemia. Reduced frequency and severity of hypoglycemia related to device use was reported by approximately half of participants.
There is little doubt about the medical benefit of diabetes technologies and their uptake is increasing but some downsides were reported. Barriers to uptake of technologies lie beyond the mechanics of diabetes management. Supporting users in using diabetes technology to achieve the best possible glycemic control, in the context of their own life, is crucial. Furthermore, understanding these issues with input from the type 1 diabetes community including family members and caregivers will help innovation and design of new technology.
Research has demonstrated that technologies to support diabetes self-management for people living with type 1 diabetes (T1D) can have positive effects on medical and quality of life outcomes.1 It also shows that there may be an additional burden of wearing and using these technologies.1 The psychosocial impact of living with diabetes is complex and impacts both the person with T1D and the people that live with and support them. Experiencing hypoglycemia, for example, is challenging for both the individual with diabetes and the individual’s family members, with family members reporting not knowing what to do or what is happening.2
It is well established that diabetes and its treatment can impact the lives of people living with somebody with T1D in both positive and negative ways.1 Continuous knowledge of glucose levels with an accurate, discrete device has been cited as a research priority by people with T1D,3 although CGM has been shown to be beneficial for self-management there are also limitations. Specifically, improvements in glucose control are dependent on consistent CGM use however this is expensive and not always reimbursed by insurance or other health care providers. Furthermore, alarm fatigue, technical failure, and accuracy problems limit ongoing engagement, with lack of trust in the devices and irritation with technological failure cited as primary reasons. A negative psychosocial impact of CGM use has been described,4 and despite a high proportion of pump use, CGM use in the T1D Exchange cohort remains low with 6% of children <13 years old, 4% of adolescents 13 to <18 years, 6% of young adults 18 to <26 years, and 21% of adults ≥26 years using CGM. Discontinuation rates are high, however, at 41% of users having discontinued use by 1 year.5
Currently, there is limited research on the impact of diabetes technologies on the lives of those people who live with someone with T1D and their role in helping them to support that person. The aim of the present survey was to explore the perceived impact of diabetes-related technology from the perspective of family members and partners of individuals with T1D, including impact of devices on the life of the individual with T1D and family members, diabetes-related burden, impact on mood and well-being of family members and impact of technology on frequency/severity of hypoglycemia, and diabetes control.
Partners and caregivers of people with T1D were invited to complete an online questionnaire about their experiences with diabetes technologies. Questions included a mix of existing validated measures (Problem Areas in Diabetes Short Form [PAID-5], World Health Organization Well-Being Index [WHO-5]) and specific questions exploring the impact of technology. The survey was hosted on T1D Exchange’s online patient community, Glu (myGlu.org). All study materials were approved by the Institutional Review Board at the Jaeb Center for Health Research (Tampa, FL). Each participant provided informed consent before participating in the study. The questions were developed by the multidisciplinary research team including medics, psychologists, statistician and family members living with T1D, prior to piloting with potential participants. Minor revisions were made in line with feedback prior to “going live.”
Emails were sent to registered Glu members who previously indicated a preference to be contacted about research studies. In addition, information about the study was provided on Glu, Facebook, and Twitter. Eligible participants were required to be at least 18 years old. For the partner survey, participants were required to be living with their spouse, partner, or significant other with T1D. For the parent survey, participants were required to have a child with T1D under the age of 18.
The study was conducted in accordance with the Declaration of Helsinki.
Quantitative responses were analyzed using SPSS software (IBM SPSS Statistics for Windows, Version 23.0) and free-text responses were analyzed using thematic coding and content analysis. Free-text data were analyzed using constant comparison methodology with 2 researchers independently analyzing and coding the text, before consensus was reached on key themes and findings.
Participant demographics and use of diabetes technology are presented in Tables 1 and and2.2. One hundred parents/caregivers took part as well as 74 partners. Mean duration of living with a person with T1D was 16 ± 13 years for partners, with mean duration of diabetes for children being 4.2 ± 3.2 years. Mean duration of current therapy was 8.3 ± 7.3 years for adults and 3.4 ± 2.9 years for children.
Some parents/caregivers reported dual use of injections using a syringe and an insulin pen In addition, 62% (n = 46) of partners and 66% (n = 66) of parents/caregivers reported current CGM use (up to 7 days a week) by their partner or child. Number of days wearing a CGM had a reported mean of 6.31 ± 1.8 by partners and 6.53 ± 1.1 by parents/caregivers.
Tables 3 and and44 present data on the impact of diabetes technology on participants’ lives and the lives of their family member. Impact of each device, on both the person filling out the survey and the impact on their family member with T1D was reported on a scale of −2 (extremely negative) to +2 (extremely positive). Partners reported that devices had a less positive impact on their own lives than on the person living with T1D. This was true for use of insulin pumps (effect on self, mean = 1.3 ± 0.8, effect on partner with T1D, mean = 1.7 ± 0.6; t = −3.9, P < .001) and CGMs (effect on self, mean = 1.1 ± 1.2, effect on partner with T1D, mean = 1.4 ± 0.9; t = −3.3, P < .01).
Parents, on the other hand, reported that pump use benefitted both themselves and their child equally (mean parents = 1.8 ± 0.5, mean children = 1.8 ± 0.5, p = ns), and that CGM use was more beneficial to themselves than their child (mean parents = 1.6 ± 0.8, mean children = 1.0 ± 1.2, t = 5.6, P < .001). When comparing partners to parents, there was a significant difference in the impact of both insulin pump (t = 4.6, P < .001) and CGM use (t = 3.1, P < .01). In both cases, parents report a more positive impact of device use on their own life than partners (means reported above).
In response to whether glycemic control had changed due to their use of diabetes technology, 86% (n = 64) partners and 82% (n = 82) parents/caregivers said that it had made it easier to achieve blood glucose targets. Table 5 shows frequency and severity of hypoglycemia.
Perceived burden was scored on a 5-point Likert-type scale ranging from no burden (0) to very large burden (4). Parents reported higher perceived burden (mean = 2.2 ± 1.3) than partners (mean = 1.2 ± 1.1; t = 5.7, P < .001).
Negative emotions were measured on the PAID-5, and this scale had good internal consistency (Cronbach’s α = .84). Overall, participants reported a relatively low degree of negativity related to diabetes (mean = 31.24 ± 21.8, range 0-100). However, parents reported more negative emotions related to diabetes on the PAID-5 scale than partners (mean = 36.4 ± 22, versus mean = 25.4 ± 20.1; t = 3.55, P < .001; see Figure 1).
The WHO-5 was used to obtain an index of well-being, with higher scores indicative of greater emotional stability. This scale had good internal consistency (Cronbach’s α = .89), and scores were mostly in the midrange of the scale (mean = 55.3 ± 21.0). Overall, 87% (n = 64) of partners and 66% (n = 66) of parents/caregivers rated their own quality of life as good over the past 2 weeks as assessed by the WHO-5.6 In all, 5% (n = 4) of partners and 11% (n = 11) of parents/caregivers reported their quality of life as poor or very poor. Parents reported significantly poorer well-being than partners (mean = 48.7 ± 21.2 versus mean = 62.7 ± 18.7, P < .001; see Figure 1). Scores on the PAID-5 and WHO-5 were correlated for both parents (r = −.46, P < .001) and partners (r = −.35, P < .01), indicating that those who had decreased well-being also reported a higher frequency of negative emotions related to their loved one’s diabetes.
Disrupted sleep was commonly reported with 73% of parents/caregivers and 59% of partners reporting waking because of diabetes technology. Of these, 54% of parents/caregivers and 12% of partners reported waking at least 4 times a week. The main reasons reported were CGM alarms (38% parents/caregivers, 36% partners) and fear of hypoglycemia (19% parents/caregivers, 4% partners). False alarms were uncommon with 26% and 23%, respectively, reporting rare false alarms; however 10% of parents/caregivers and 9% of partners reported false alarms occurring more than once a week. Interestingly, participants report the impact of diabetes technology for their partner/child as generally positive.
Reported involvement in partner’s diabetes management did not appear to vary irrespective of duration of diabetes, gender or diabetes-related complications according to the free-text responses. The tables in the online appendix present data on impact of diabetes technology on lived experience, daily functioning, nocturnal waking and satisfaction with training provided for device use.
Free-text responses were coded into key themes, based on how participants reported helping their loved one with T1D. Key themes, listed in order of frequency of occurrence, were the following:
Responses included the following:
“If I notice him acting strangely, I’ll ask him to check his CGM to see if he needs a correction.”
“I am a constant assistant to my wife. I help with site changes and BG checks on a daily basis. I help treat highs and lows and always keep a watchful eye over her.”
“My partner is very independent and private with diabetes management, so aside from support and providing snacks to help with low blood sugar, I do not contribute significantly.”
“Be encouraging and patient.”
“I encourage, support, and enable her ability to exercise and eat properly. I support her desire to explore and research new technology. I listen.”
“When he is sick or tired, I take over. Sometimes I offer just to give him a break. I also get his kit anytime he is home and needs it just to take the burden off of him.” [parent]
“Guide and coach.” [parent]
“I order all supplies for her, I attached her CGM to the back of her arm. . . . If she is sick or had an unusual amount of exercise, I get up at night to check on her.” [parent]
“Cheerleading. Encouraging. Reminding. Everything that a teenager considers nagging.” [parent]
“By approaching her care as a team.” [parent]
“Trying to achieve normal values without affecting their normal lifestyle to the extent possible.” [parent]
“Helping to get some sugar into him with severe hypoglycemia.” [partner]
Unsurprisingly, there was a high use of CGM in both groups—partners and parents/caregivers with a high number of male partners participating. This finding is consistent with reported CGM use within the Glu community, in which 64% of people who provided this information were current or former CGM users.
There was a considerable difference in perceived burden of diabetes management support for partners versus parents/caregivers. Again this is perhaps unsurprising considering that parents/caregivers take responsibility for a younger child’s diabetes management rather than simply providing support. There was a broad range of involvement in the partner’s diabetes care which may point to factors such as personality characteristics of the respondent and/or the partner living with T1D
Interestingly, not all participants reported currently using a standard BG meter, however this may be a function of it being “taken as given” rather than lack of use. Even with consistent CGM use, a standard BG meter remains necessary for calibration and to confirm glucose readings before dosing insulin. Generally, technological devices were reported as having a neutral or positive impact on participants’ lives, however combined insulin pump and CGM devices fared less well.
A reported benefit of insulin pump therapy, CGM, and artificial pancreas use is reduced severity and frequency of hypoglycemia.7,8 This outcome was reported by half of participants, who believed their family member experienced fewer hypoglycemic events, and similarly half reported reduced severity of hypoglycemic events. These results could perhaps be attributed to tighter glycemic targets that the technology can facilitate, or perhaps a requirement for greater utilization of the specific features of the technology, for example, temporary basal rates. Most participants reported achievement of glycemic targets to be easier for their partner/child with T1D as a consequence of using diabetes technology.
The ability to target tighter glycemic control, while beneficial medically, may in fact add to the burden of disease management. Diabetes-related distress, including fear, feelings of guilt, anxiety, depression, and being overwhelmed by diabetes management, was commonly reported by both parents/caregivers and partners. The challenge of helping to manage diabetes was reported as a large or very large burden by 45% of parents/caregivers and 11% of partners, which may contribute to the high numbers of participants reporting elevated diabetes-related distress.
Parents/caregivers reported a more negative impact on family relationships than did partners. There was widely reported negative impact on relationships, more so for parents/caregivers than partners. While T1D can be difficult for all family members, parents/caregivers in particular seem to shoulder more of the burden as evidenced by their decreased quality of life. Family conflict is commonly associated with diabetes,9 as the additional pressure of managing diabetes alongside other daily tasks takes its toll.
Regarding impact of technology on sleep and night time alarms, research is ongoing to develop more robust CGM alarm algorithms that will reduce false positive alarm rates by modeling physiology,10 compensating for frequent perturbations such as pressure.11 Furthermore, the integration of multiple diabetes technologies, such as automatic dose capture (eg, Smart Pens), more accurate and reliable CGM,12 and robust physiological algorithms that include insulin on board estimates,13 is also further expected to increase CGM alarm reliability, reducing intrusiveness and disease reminders.
The strength of the current study is that it is the first study that directly explores family member perspectives of the impact of diabetes technology, which informs potential uptake and sustained successful use thereof. The study is limited however in that it reaches only participants who are members of the Glu community and so may not be representative of the wider diabetes community, for example, Glu membership may be more tech savvy as an online community. That being said, Glu is an open community of persons with T1D, and is one avenue where greater understanding of the disease and supporting improved experiences for those living with T1D is actively pursued. Exploring concerns about accuracy of devices in greater detail would have been useful in terms of explaining whether this is a contributing factor for discontinuation of CGM devices.
It could be argued that the experiences of partners and parents/caregivers are different in terms of levels of responsibility and experience. We would suggest, however, that within these cohorts the experiences of individuals vary hugely, as seen in the results. It is our opinion that there are both similarities and differences between and within the groups, and these are explored from a personal perspective in the current study. This is both a strength and a limitation, and debate is welcomed in this regard.
There is little doubt about the medical benefit of diabetes technologies, and their uptake is increasing. To ensure that such devices are used in a way that returns maximum benefit from a medical and psychological perspective, it is necessary to understand the personal experiences of users and their families. Barriers to uptake of technologies lie beyond the mechanics of diabetes management. Supporting users in using diabetes technology to achieve the best possible glycemic control, in the context of their own life, is crucial.
MD acknowledges support from the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care–East Midlands (NIHR CLAHRC-EM), the Leicester Clinical Trials Unit, and the NIHR Leicester-Loughborough Diet, Lifestyle and Physical Activity Biomedical Research Unit, which is a partnership between University Hospitals of Leicester NHS Trust, Loughborough University, and the University of Leicester. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health. We would like to acknowledge T1D Exchange, a program of Unitio, Inc, for supporting this study, and we thank the Glu community for their participation.
Abbreviations: CGM, continuous glucose monitoring; PAID-5, Problem Areas in Diabetes Short Form; T1D, type 1 diabetes; WHO-5, World Health Organization Well-Being Index.
Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding: The author(s) received no financial support for the research, authorship, and/or publication of this article.
Supplemental Material: The supplementary material is available at http://dst.sagepub.com/supplemental