Ensayos superficiales

Diabetes-related distress (DRD) was present in this study sample at levels consistent with the literature with a mean score of 2.00, SD = 0.92 (range = 1.00 to 5.47). Higher distress levels were reported with significant associations by those who were younger, female, and had higher HbA1c levels. From studies to date distress scores range from 1.00 - 5.76, from a possible 1 – 6, with a mean score of 2.27 (SD = 1.03) (Polonsky et al., 2005). As

presented in Table 22, total scale mean scores and subscale mean scores in the current study are similar to those in other studies using the Diabetes Distress Scale (Polonsky et al. 2005). Mean scores in this study were higher for the emotional burden subscale rather than regimen related as in Polonsky et al. (2005) however, this may be due to all participants in this study being on insulin.

Table 22

Mean Total Diabetes Distress Scores and Subscales Scores for the Current Study and for Polonsky et al. (2005). 1=no problem – 6 = serious problem.

Diabetes Distress Scale Current study

Mean (SD) Polonsky et al. (2005) Mean (SD) Total scale 2.00 (0.92) 2.27 (1.03) Subscales: Emotional burden 2.25 (1.19) 2.58 (1.35) Physician-related distress 1.63 (1.02) 1.74 (1.08) Regimen-related distress 2.06 (1.02) 2.63 (1.37) Interpersonal distress 2.04 (1.28) 1.82 (1.16)

Overall, diabetes-related distress levels reported by participants using the diabetes distress scale appeared relatively low and this is consistent with the literature. However, data from the 18 participants who participated in interviews revealed a divergent picture. Thematic analysis of the interview data revealed a range of negative emotions impacting on

participants‟ lives such as feeling down, feeling pathetic and experiencing just not into it days. Interestingly, many participants appeared reluctant to classify these negative emotions as distress and were reluctant in general to admit to feeling distressed.

While acknowledging the qualitative data is based on a smaller subset of this study‟s participants, the marked discrepancy between quantitative and qualitative findings raises questions about the Diabetes Distress Scale as an appropriate scale to use in the context of NZ culture. Based on participants‟ responses in this study, people with diabetes in New Zealand may be reluctant to admit to distress and this potentially would likely apply to those with other long term conditions. Participants offered suggestions for the

discrepancies such as the stigma associated with emotional distress, with a pervading perception that those admitting to experiencing emotional difficulties were weak. The theme she’ll be right’ captured the „stiff upper lip‟ attitude often held in New Zealand and was remarked on by many as a potential barrier to disclosing distress. The lack of an established relationship with a health professional whom they trusted was also described as a potential barrier to disclosing distress. Furthermore for some, admitting distress would mean having to face up to their problems and dealing with them.

It is possible the self-report nature of the distress scale in the context of a research project was less conducive to revealing distress and that participants felt freer to express their feelings in a more personalised way through interview. Although it is known that people seldom tell professionals what is difficult for them (Zoffman et al., 2008), universally participants agreed that health professionals should enquire about distress. Therefore it is possible that in a clinical practice context where the information was to be utilised to inform a package of care, participants may respond differently again.

The thematic analysis in chapter seven described a spectrum of control spanning personal and interpersonal characteristics. On the personal level three themes were identified:

frustration, longing for normality and in control. These themes capture the essence of how participants struggled with the unpredictable nature of diabetes while they sought to achieve control of it. Frustration occurred as the body did not respond in the way they expected or wanted it to resulting at times in rebellion. Rebellion was directed at either the diabetes itself by not blood glucose monitoring or proactively adjusting insulin doses, or to others around them including health professionals. Rebellion was not necessarily a phase in a trajectory towards developing expertise in diabetes self-care as described by Paterson and Thorne (2000) but rather reflected more „a moment in time rebellion‟ in response to others‟ criticism or challenging life events.

Quantitative data analysis showed a significant positive association between higher distress and higher (worse) HbA1c levels (Table 9). In response to frustration, longing for

normality and wanting to be in control, a counterstrategy for some was to completely ignore their diabetes. Of interest some of these participants rated themselves as highly activated. These participants were acting consciously and knowledgably and were aware they were putting their physical health at risk, however, maintaining emotional well-being was more important to them as was the ability to function on a day to day basis. Indeed, this wrestling for control has been expressed by Townsend, Wyke, and Hunt (2006) as a “moral dimension to the chronic illness experience” (p. 186) where the impacts of a long term illness are voiced as “something to be struggled against, and to be controlled” (p.186).

Chapple and Rogers (1999) report a diversity of control behaviours, with those with a long term condition more likely to want to be in control of their own care in contrast to those in an acute care situation preferring others to take control. Control beliefs have been

previously described by Bandura (1997) as “whether one can produce desired events or avoid undesired ones independent of any means…..Lack of control may arise from personal incapabilities or the social structure of outcome contingencies” (p. 27). Social cognitive theory comprises internal and external locus of control. A distinction is made between the loci of control as they have “different motivational, affective, and behavioural

effects and indicate whether personal or social remedies are required” (Bandura, 1997, p. 27). Therefore it is possible that people experiencing more distress had low perceived internal locus of control as they felt less able to personally maintain control of their diabetes and felt less control within clinical encounters with health professionals. In this study control and distress appeared to be inextricably linked on a dynamic continuum where at times distress acted as an activator or as a de-activator. In Thorne et al.‟s (2003) study on self-care decision-making participants described the decision to take control as including heightened vigilance and monitoring and goal setting. Being „in control‟ also meant being able to mediate the effects of diabetes. While this description will be

congruent with some of this current study‟s participants, for others being in control of their diabetes meant putting it to the back of their mind and not letting it interfere with their day to day activities.

Interpersonal control was represented by the theme: self-determination. Control of their diabetes and its management was highly important for many participants and any threats to this were met with both overt and covert resistance. When participants felt able to self- determine their treatment options they were more positive about their diabetes and less distressed as they felt more in control of its management. Having options presented and the opportunity to discuss these options and how they may fit their personal circumstances was empowering. Indeed, as stated by Townsend et al. (2006) “people express their desire to be perceived as credible patients in the medical encounter, and as medication users” (p. 186). Where participants perceived they did not have the opportunity to contribute, or felt they had their own ways of managing their diabetes, they would just go through the motions when they attended appointments. This may manifest in behaviours such as not disclosing accurate blood glucose results or insulin doses. Others who had tried to fit what they called „a model‟ for years but had not achieved it, attended appointments and

passively agreed with all recommendations knowing full well they had no intention of applying them. This behaviour may be explained by Goffman‟s theory of face work “whereby individuals interpret and act in order to maintain face of self and other” (Shattell, 2004, p. 715). Goffman (1959) surmised that when an individual “appears before another

he will have many motives for trying to control the impression they receive of the situation” (p. 26).

To summarise diabetes-related distress, adults with diabetes treated with insulin in this study experienced distress at similar levels to that described in the literature when responding to the Diabetes Distress Scale (Polonsky et al., 2005). More distress was

described in the interviews than was evident in the quantitative analysis and for many was a part of life with diabetes. While many participants described a reluctance to disclose distress, diabetes was frequently referred to as a difficult disease to have as it impacted on every facet of daily life. For some managing their diabetes occupied a significant amount of time and energy. Maintaining a balance between day to day life pressures and diabetes self-care activities was challenging for many and appeared to negatively impact on health activation. For some it was easier to ignore their diabetes self-care in order to preserve emotional wellbeing. A spectrum of control was described characterising personal control where participants sought control over their diabetes and their lives, and interpersonal control within therapeutic relationships where participation in decision-making to varying degrees was important. In the literature review I presented a variety of perspectives on control over decision-making which concluded that eliciting preferences for participation in or control over decision-making is important, as joint goal setting improved satisfaction and adherence to treatment regimens. Interpersonal control within the therapeutic relationship will be discussed further in the section to follow.