Patient-Perceived Family Stigma of Type 2 Diabetes and its Consequences

Abstract

Introduction

Adults with type 2 diabetes (T2D) report being monitored and judged by family members, contributing to feelings of guilt/shame and attempts to conceal one’s diabetes status or self-care efforts. However, studies have not yet quantitatively examined T2D stigma from family members. Our objective was to assess the frequency of T2D family stigma and its association with helpful and harmful diabetes-specific family behaviors and psychological and behavioral consequences of stigma.

Methods

A sample of predominantly African American adults with T2D and low income completed items written for this study to assess T2D family stigma and consequences of stigma. We explored frequencies and bivariate correlations between these constructs and diabetes-specific family behaviors (measured with the Diabetes Family Behavior Checklist-II).

Results

Participants (N=53) were 57.3±8.7 years old, 70% African American, 96% had annual incomes <$20K, and average HbA1C was 8.0±2.2%. Over half (57%) reported at least one experience of family stigma (1.26±1.8 out of 9 queried, α=0.84) and 28% reported at least one consequence (0.6±1.3 out of 5 queried, α=0.87). Reporting more family stigma was associated with more consequences (rho=.52, p<.001), but not with helpful or harmful family behaviors.

Discussion

Perceptions/experiences of T2D-related family stigma were common in our sample and associated with consequences of stigma including concealment and resentment of self-care, which may affect clinical outcomes.

Introduction

People who have diabetes report experiencing disease-specific stigma (Nicolucci et al., 2013) that is both internal (feeling judged for having diabetes) and external (being monitored and blamed for having diabetes) (Browne, Ventura, Mosely, & Speight, 2013; Browne, Ventura, Mosely, & Speight, 2016; Schabert, Browne, Mosely, & Speight, 2013). Patients prescribed insulin to manage their diabetes report insulin-specific stigma and consequences including embarrassment when administering insulin in public, having to explain their condition, and feeling judged because needle/syringe use is associated with severe/terminal illness or illicit drug use (Browne, Ventura, Mosely, & Speight, 2014).

Although diabetes related stigma from health care professionals and the general population has been investigated, patient perceptions and experiences of Type 2 Diabetes (T2D) stigma from family members and the consequences of stigma from family members remain understudied. Qualitative research has identified family members as a common source of stigma related to obesity (Lewis et al., 2011) and T2D (Browne et al., 2013; Newton-John, Ventura, Mosely, Browne, & Speight, 2016). Harmful family behaviors–including nagging and arguing about self-care and sabotaging self-care efforts–have been associated with less self-care adherence and higher HbA1C values (Mayberry & Osborn, 2014). T2D-related stigma from family members may motivate or underlie harmful family behaviors, specifically sabotaging of self-care efforts.

However, to our knowledge, no study to date has explored the frequency of perceived or experienced T2D-related stigma from family members (hereafter, family stigma) or quantitative associations between family stigma and harmful family behaviors or consequences of stigma. Therefore, we drew upon theory and research on diabetes stigma (Browne et al., 2013; Browne et al., 2016; Schabert et al., 2013) to define T2D-related family stigma as the combination of explicit actions of discrimination performed by family member(s) as well as felt stigma by which the individual experiences shame because of the diagnosis or associated with the performance of self-care behaviors for T2D as a result of these real or anticipated acts of discrimination from family members. Experiences of diabetes-related stigma lead to concealment attempts such as refusal to disclose diabetes, hiding and delaying insulin injections, and reluctance/refusal to share openly with health professionals and family members about self-management, glucose readings, and weight (Davies et al., 2013; Schabert et al., 2013). Thus, we hypothesized that more experiences of family stigma would be associated with more harmful family behaviors, and more psychological and behavioral consequences of stigma, and with less supportive family behaviors.

Methods

In 2014, we called participants in an earlier study, Diabetes MeASURES, who had given permission to be contacted about future studies to complete a 20-minute phone survey for $5 compensation. The Diabetes MeASURES (Diabetes Medication Adherence Study in an Underserved Racially and Ethnically diverse Sample)(Mayberry & Osborn, 2014) study recruited English-speaking adults with T2D who were recruited from a Federally Qualified Health Center (FQHC) in Nashville, TN sequentially when they arrived for a clinic appointment in 2010–2012. Trained research assistants called to ask Diabetes MeASURES participants if they would participate in a brief phone survey about family involvement in diabetes care. Informed consent was completed verbally. All procedures were approved by the Vanderbilt Institutional Review Board.

We drew upon Schabert et al.’s (2013) theoretical framework and Browne et al.’s (2013) qualitative research on the sources and experiences of diabetes stigma to develop items assessing patient-perceived family stigma and its psychological and behavioral consequences. Simultaneous with these efforts, Browne et al. (2016) developed and validated a measure assessing T2D-specific experiences and perceptions of stigma not specific to family members, the Type 2 Diabetes Stigma Assessment Scale. Similarities between our items and Browne et al.’s (2016) lend construct and face validity for our items. Nine items assessed patient-perceived family stigma focused on stigma about people with T2D and self-care (Figure 1). Five items assessed the consequences of stigma focused on psychological and behavioral consequences of stigma (Figure 1). Response options ranged from 0=strongly disagree to 4=strongly agree and were analyzed categorically (agree/strongly agree vs. other response) and as a composite (averaged across items).

Figure 1.

Patient-perceived family stigma and consequences of stigma.

The Diabetes Family Behavior Checklist-II (DFBC-II) assessed how many times in the past month family members performed each helpful (9 items) or harmful (7 items) diabetes-specific behavior on a scale from 1=never to 5=once per day. Items assessing helpful family behaviors ask about family members praising and encouraging self-care, helping with decision-making, and performing healthy behaviors with the participant. Items assessing harmful behaviors ask about family members criticizing or nagging the participant about self-care or making self-care efforts more difficult. Responses were averaged to create helpful and harmful subscales. Prior research has found these subscales to be independently associated with adherence to self-care and glycemic control (Mayberry & Osborn, 2012, 2014).

All analyses were conducted with Stata 13. We identified how many participants answered agree/strongly agree to each item and assessed internal consistency reliability (Cronbach’s α). Mann-Whitney U/Fisher’s exact tests assessed differences between participants who agreed with at least one family stigma item and, separately, at least one consequence of stigma and participants who did not on all variables in Table 1. Mann-Whitney U tests also assessed whether participants prescribed insulin had higher scores on any item assessing family stigma or consequences of stigma. Finally, Spearman’s correlations examined associations between family stigma and consequences of stigma, supportive and harmful family behaviors. There were no missing data for family stigma or consequences. Only one participant was missing data on the DFBC-II and six refused to disclose their income. Because all analyses were pairwise, case deletion was used for missing data but only affected the analyses including the DFBC-II and income.

Table 1.

Participant characteristics

N = 53	M ± SD or n (%)
Age (years)	57.3 ± 8.7
Female	39 (73.6)
Race/ethnicity, Non-Hispanic White	15 (28.3)
Non-Hispanic African American/Black	37 (69.8)
Other race	1 (1.9)
Education (years)	12.9 ± 2.4
Annual household income, <$10,000	20 (42.5)
$10,000–14,999	15 (31.9)
$15,000–19,999	10 (21.3)
≥$20,000	2 (4.3)
Insurance status, Uninsured	27 (50.9)
Public insurance	24 (45.3)
Private insurance	2 (4.3)
Diabetes duration (years)	11.2 ± 8.2
Insulin status	25 (47%)
Family behaviors (DFBC-II), Supportive	2.6 ± 0.9
Harmful	2.2 ± 1.0
Glycemic control (HbA1C, %)	8.0 ± 2.2
Suboptimal (≥7.0%)	29 (58)

Note: DFBC-II, Diabetes Family Behavior Checklist-II; HbA1C, hemoglobin A1C.

Results

Participants (N=53) were predominantly female (74%) and African American (70%), with low socioeconomic status (SES; Table 1). Internal consistency reliability was good for items assessing family stigma (α=0.84) and for items assessing consequences of stigma (α=0.87). All items and frequencies are shown in Figure 1. The average number of experiences reported was 1.26±1.8 and the average number of consequences reported was 0.6±1.3. Fifty-seven percent agreed with at least one experience of stigma; twelve (23%) agreed with one experience of family stigma, eight (15%) with two experiences, seven (13%) with three experiences, and three (6%) with four or more experiences. Twenty-eight percent agreed with at least one consequence of stigma; eight (15%) agreed with one consequence, one (2%) with two consequences, two (4%) with three consequences, and four (8%) with four or more consequences.

There were no differences between participants who agreed with at least one family stigma item or, separately, one consequence of stigma and those who agreed with none on any variable in Table 1. Participants prescribed insulin had more agreement with one item (“My family members…think I don’t need to exercise,” 2.2±1.2 vs. 1.5±0.5, p=.02) than those prescribed oral medications only. More patient-perceived family stigma was associated with more consequences of stigma (rho=.56, p<.001), but not with supportive or harmful family behaviors.

Discussion

This small, exploratory study informs the degree to which family stigma was perceived and/or experienced by patients and should be addressed in future research. We found that patient perceived family stigma was associated with more behavioral and psychological consequences of stigma (e.g., concealing or resenting self-care). Furthermore, in our sample of predominantly African American adults with T2D and low SES, T2D-related family stigma was relatively common. Nearly 60% reported family stigma item and nearly one-third reported a consequence of stigma. Notably, the inverse is also true–around 40% did not report experiencing family stigma and around 70% did not report negative psychological or behavioral consequences of stigma. The most frequently reported family stigma items were related to participants’ T2D status (i.e., being unhealthy and at fault for getting T2D) rather than stigma of self-care efforts. Notably, there were no sociodemographic difference between participants who agreed with family stigma items or consequence of stigma items and those who did not. We hypothesized that patients prescribed insulin would experience more family stigma, but scale scores were similar regardless of medication regimen and participants prescribed insulin had higher scores on only one item. We also hypothesized that family stigma would be associated with less supportive or more harmful family behaviors, but it was not. Future work should explore other potential antecedents of harmful family behaviors, which are associated with less patient adherence and worse HbA1C (Mayberry & Osborn, 2014). Our study examined experiences of predominantly African American adults with low SES in the US, who have not been the focus of T2D stigma research to date, and suggests they may need support to address family stigma and avoid adverse consequences of stigma.