Barriers to Glycemic Control among Latina Diabetics: A Multi-

Method Study

M. Diane McKeeJeff Levine

Eliana KorinCharles Schwartz

Alison KaraszArthur Blank

Background

Latinas with Diabetes Mellitus: Disproportionately affected by the illness Control less successful, even for patients receiving

primary careEfforts to improve care via Chronic Care Model:

Focus on systems to increase patient information for providers and self-management for patients

Attention to mental health largely focused on depressionImproving diabetic care may require a broader, integrated

approach targeting: Socio-cultural and family barriers Mental health barriers go beyond depression

Specific Aims

For Latinas with well-controlled versus poorly-controlled diabetes:

• Obtain preliminary data about mental health variables, including mood disorders and abuse,

• Investigate the socio-cultural context of diabetes care with emphasis on barriers to successful management,

• Use quantitative and qualitative methods to explore family relationships and family stresses.

Setting and Participants

Setting: 6 Bronx hospital-affiliated family medicine practices

Participants: Latina women with diabetes receiving primary care

Inclusion Criteria: at least 2 visits to site in the past year, and highest HgbA1C<7.5 (“well-controlled”) or > 9.5

(“poorly controlled”) self-identified Latina

Recruitment

Potential participants identified by CIS (problematic) and diabetes collaborative database (much more useful)

Letter mailed signed by PCP Phone outreach to patient by research

team (!) First 20? participants invited to take

part in both qual and quant on separate days

Qualitative-Objectives

To assist in designing effective interventions for Latina women with out-of-control diabetes, we explored: Socio-cultural and family factors affecting diabetes care Health beliefs about diabetes: illness, prognosis,

treatment Diabetes in current life context: where diabetes “fits”

among competing priorities Mental health issues impeding care

Qualitative Methods

Data Collection: In-depth qualitative interview (English or Spanish)

lasting 30-70 minutes (phone or in-person) Audio taped, transcribed verbatim, then translated by

professional translator

The Interview: Perceived overall health status and main health

concerns; Participant’s stories of how diabetes affects their

families; Descriptions of self-care activities and barriers; Prompts explored interaction with the health care

system, and family dynamics related to diabetes.

Qualitative Analysis

Team reflexivity exercise completed before analysis Coding scheme developed and applied A set of psychological and contextual factors were

identified that were hypothesized to be associated with decreased ability to engage in diabetes self-care

Each narrative systematically re-examined to identify these these factors in relation to glycemic status

Variables hypothesized to be related to decreased ability to engage in self-care were found in individuals with good glycemic control

Narratives re-examined to identify strengths that might contribute to good glycemic control

Themes

Latina Context Family legacy of diabetes Diabetic diet as culturally alien Tension between care for self versus others Socioeconomic limitationsMaladaptive Psychological Styles Fatalism Blurring of symptoms Treatment worse than the disease “Talking the talk” without “walking the walk” Psychiatric symptoms and disordersSources of Resilience Self-efficacy Family support and adaptation to diabetes

Family Legacy of Diabetes

“….I’ve seen what it did to my parents…you know, my parents lost the eyesight, their kidneys failed, (they) were on dialysis…so…I had it in the back of my mind….”

“…we expected it (diabetes)…we knew our parents had it and died of it…we prepared ourselves that sooner or later we would get it…”

Care for Others versus Self-Care

direct conflict between diabetes self-care, and the revered role as matriarch and caregiver

“….that’s the problem in my home…I’ve always been the tree trunk…the one helping (to keep) things together…”

Diabetic Diet as Alien

diet at odds with culturally meaningful foods; in direct conflict with preparing and serving meals appealing

and nurturing to families

“….I’m used to eating a certain way. When you have diabetes you have to change your whole life around. You have to eat a certain way and it’s kind of hard. I mean being Hispanic I love rice and beans (laughs)…you know?….”

Socio-Economic Limitations

“…Because you go to the supermarket, you buy things for the family, and…your diabetes is not on the dot in the budget”

“…Sometimes I don’t have (money). So how am I going to keep on a diet?”

“…if I don’t have any control of what I have…I eat whatever is there”

Blurring of Symptoms

Mixed physical and mental symptoms, often seen as all due to diabetes; leading to adoption of

maladaptive self-care strategies

“ …I have a sickness in my body that is called [fibromyalgia]..the thing is that when my body hurts me, I don’t know if (it) is the arthritis, depression, fibromyalgia… or diabetes, or my nerves. The thing is that I cannot say if it’s one more than the other, but the diabetes makes me feel bad and I get a lot of dizziness..”

Treatment Worse than the Disease

“….Actually, when [my blood sugar] is high I’m OK. According to the doctors….my body is used to it. When they try to control it…it starts coming down…I have a problem. That’s when I start getting sick…they call it withdrawal…of the sugar….”

Fatalism

“If I have AIDS, if I have cancer or diabetes…I already have it…If I like it I eat it. I tell [my family] give it (the candy) to me…if I am going to die, I’m going to die anyway…”

“Talking the talk” without “walking the walk”

“(My health) has been fine in the past year, no problems. I watch what I eat and take my medication…I have to take care of myself …because...I’m completely in charge of my kids’ well-being…you gotta take care of yourself…because you have people to take care of…a very close friend…I nudge…we get on each others’ case…” [HgbA1C 12.7]

Beyond Depression

Participants with a very wide range of psychiatric problems: Depression Thought Disorder Panic Disorder Generalized anxiety Fibromyalgia and other somatization Psychiatric and substance disorders in children,

partners, siblings, parents Bereavement: multiple, prolonged, complicated Chronic psychosis

Sources of Resilience

Individual Resilience: Self-Efficacy

“I tend to be a type of person that I nip things in the bud. I don’t like to let it go…”

“Exercise. I do walk for an hour-that’s what helps contain it, because I can’t say I follow a great diet. cause I was working out I didn’t need the medication. You know people say oh I’m tired, I can’t go to the gym. When you go to the gym and all of that goes away. And it’s so good for you”

Family Resilience

Family Resilience: Role Adaptation to Diabetes

“My family worries about me. They just want me to take care of myself…Oh (my partner) loves (to cook healthy foods)…I tell him what to do …now it’s different cooking and ingredients…”

Qualitative Insights

Narratives with inner city Latinas illustrate major barriers that go far beyond knowledge and motivation and limit participation in self care activities

Barriers to glycemic control include• Contextual factors (limited resources, family stressors)• High burden of co-morbid mental illness • Maladaptive individual styles

Blurring of mental and physical symptoms, attributed to DM Lack of insight into actual self care Fatalistic thinking Belief that treatments is worse than the disease

Qualitative Insights

Resilience of individuals with diabetes, and/or their families may mitigate success or failure of efforts to control diabetes

Interventions with Latina women should be sensitive to the unique Latina experience of diabetes• Fear and potential fatalism resulting from the family

legacy of diabetes• Conflict between the Latina role as matriarch and

caregiver, and the need for diabetic self-care• Include culturally sensitive implementation of the diabetic

diet

Survey-Objectives

Measurable psycho-social predictors of glycemic control

Explore hypotheses related to socio-cultural context, family environment, and mental health

Post-hoc analyses to explore hypotheses generated by qualitative data

Domains and Measures

• Depression- PHQ• Bipolar- MDQ• Alcohol- CAGE, AUDIT• Abuse- Abuse Assessment Screen• Regimen Specific Social Support• Diabetes QOL- PAID• Family Cohesion and Conflict- FES

Familism• Physician Trust- Stanford• Health Literacy (STOFHLA)

Recruitment and Participation

Final quantitative sample n=102

320 invited by mail 197 unable to reach (62%)21 refused (17%)

In-control (N = 62)

Freq (PCT)

Out-Of-Control (N =40)

Freq (PCT)

Language spoken at home (N= 102 )

English 18 (29.03) 13 (32.50)

Highest grade completed (N= 100 )

8th grade or less 18 (29.51) 14 (35.90)

Some high school but not graduated 14 (22.95) 10 (25.64)

High school graduate or GED 18 (29.51) 7 (17.95)

Some college or 2-year degree 9 (14.75) 7 (17.95)

4-year college graduate 2 (3.28) 1 (2.56)

Marital Status (N= 98)

Single 12 (20.34) 11 (28.21)

Married 15 (25.42) 9 (23.08)

Common law/civil union 3 (5.08) 2 (5.13)

Living with partner 2 (3.39) 2 (5.13)

Separated 7 (11.86) 5 (12.82)

Divorced 8 (13.56) 6 (15.38)

Widowed 12 (20.34) 4 (10.26)

In-control (N = 62)

Freq (PCT)

Out-Of-Control (N =40)

Freq (PCT)

Mexican/Mexican American 1 (3.23) 0 (0.00)

Puerto Rican 19 (61.29) 14 (82.35)

Dominican 7 (22.58) 2 (11.76)

Central American 1 (3.23) 1 (5.88)

South American 2 (6.45) 0 (0.00)

Other Hispanic 1 (3.23) 0 (0.00)

% Employed FT, PT (N = 96 ) 12 (20.69) 6 (15.79)

% Born in USA (N = 98 ) 10 (16.95) 10 (25.64)

In-control (N =62)

Mean (CI)

Out-Of-Control (N =40)

Mean (CI)

Mean Age (N =99 ) 53.95 (51.18 – 56.71)

52.19 (48.99- 55.39)

Average number of children (N=99 ) 2.97 (2.51 – 3.43) 3.08 (2.42 - 3.74)

Average number of years in USA (for the foreign –born) ( N = 79)

21.86 (18.08 – 25.64)

22.28 (17.42 – 27.13)

Table 5. Group differences of scales

Measure Group P-valueParametric+

P-valueNon-parametric++

Effect sizeIn control

Mean (CI)Out of controlMean (CI)

Stanford Trust 86.34 (82.13 – 90.55) 85.05 (78.62 – 91.49) 0.73 0.57 0.06

MDQ 3.19 (2.37 – 4.02) 4.23 (2.91 – 5.55) 0.16 0.26 -0.26

Familism 8.38 (8.02 – 8.75) 8.65 (8.23 – 9.07) 0.35 0.35 -0.21

Paid 24.74 (18.33 – 31.15))

38.01 (27.94 – 48.08) 0.02* 0.046* -0.43

Cohesion 59.31 (56.81 – 61.82) 58.91 (55.62 – 62.21) 0.84 0.96 0.04

Conflict 41.11 (38.57 – 43.65) 42.97 (39.16 – 46.79) 0.39 0.56 -0.17

PHQ9 7.19 (5.41 – 8.98) 7.59 (5.21 – 9.97) 0.79 0.89 -0.05

RSSS 24.92 (21.86 – 27.98) 25.76 (21.67 – 29.92) 0.73 0.75 -0.07

STOFHLA 26.43 (23.52 – 29.35) 27.42 (23.44 – 31.40) 0.69 0.56 -0.10

+ t-test is used to obtain the parametric p-value++ Wilcoxon rank-sum test (equivalent to Mann- Whitney U-test) is used to obtain the non-parametric p-value#Effect Size (d) is computed based on out of control group SDStandards for mean difference ES's according to Cohen (1988) are:Small = .2SD; Medium = .5SD; Large .8SD

PAID

Higher score reflects greater distress related to diabetes

Only scale with significant difference between groups (p=.046)• In-control 24.7 (18.3-31.2)• Out-of-control 38.0 (27.9-48.1)

Pearson Correlation Coefficients Prob > |r| under H0: Rho=0

Number of Observations Stanford_Score100 FamilismScore MdqScore PaidScore Cohesion Conflict Phq9Score RsssScore TOFHLA_ScoreN

Stanford_Score100 1.00 92

0.09 0.35 92

-0.23 0.03* 92

-0.161 0.12 92

0.27 0.01* 88

-0.19 0.08 88

-0.26 0.01* 92

0.12 0.25 92

0.27 0.03* 70

FamilismScore 1.00 92

-0.29093 0.0049 92

0.03 0.81 92

0.32 0.0023* 88

-0.29 0.01* 88

-0.01 0.95 92

0.02 0.82 92

-0.36 0.0020* 70

MdqScore 1.00 92

0.31 0.0029* 92

-0.20 0.06 88

0.35 0.0009* 88

0.29 0.0042* 92

0.07 0.53 92

0.08 0.50 70

PaidScore 1.00 92

-0.38 0.0002* 88

0.29 0.0071* 88

0.74 <.0001* 92

0.20 0.05 92

0.03 0.80 70

Cohesion 1.00 88

-0.40 <.0001* 88

-0.34 0.0013* 88

0.05 0.66 88

-0.072 0.56 67

Conflict 1.00 88

0.09 0.37 88

-0.23 0.03* 88

-0.06 0.64 67

Phq9Score 1.00 92

0.26 0.01* 92

0.01 0.97 70

RsssScore 1.00 92

0.22 0.07 70

TOFHLA_ScoreN 1.00 70

Mental Health

Depression (PHQ-9) Mean All: 7.4 (7.1) Mean IN: 7.2

(7.0) Mean OUT:7.6 (7.4)

Depression (PHQ>10) P=0.56 (Chi-Square)

PHQ<10

PHQ>10

In control

46 (74.2%)

16 (25.8%)

Out of control

26 (66.7%)

13 (33.3%)

Mental Health

Bipolar (MDQ) Mean 3.6 (3.6) In 3.2 (3.2) Out 4.2 (4.1)

Bipolar (MDQ>7) Chi-square=.01,

p=.02

MDQ < 7

MDQ> 7

InControl

5385.5%

914.5%

Out ofControl

2564.1%

1435.9%

Family conflict and cohesion

Overall, measures performed well in population (alphas .88 to .97)

Exception: FES Cohesion (.43) Conflict (.73)

Cohesion mean 8.1 (norm 6.9) Conflict mean 1.5 (norm 3.26) Not a predictor of glycemic control

Additional Findings

Health Literacy Mean 26.8 (10.1) Lower than general population But adequate and no difference between groups

Abuse and substance use Much less common than anticipated Responses probably not valid But this problem is unusual and may be particular to

the population

Familism Highly endorsed but not discriminating

Post-hoc Analyses

Role of blurring?

Is there quantitative evidence of the resilience factors we identified?

Why such high correlation between PHQ and PAID, yet only PAID discriminates glycemic control?

Blurring

PAID: “Which of the following diabetes issues are currently a problem for you?” …

#7. Not knowing if your mood or feelings are related to your diabetes?

Mood_bc_DM(Mood bc DM)study_groupNot a

problemMinor

problemModerateproblem

Somewhatserious problem

Seriousproblem

Total

In control 3962.90%

1219.35%

46.45%

23.23%

58.06%

62 

Out ofcontrol

1641.03%

512.82%

615.38%

512.82%

717.95%

39 

Total 55 17 10 7 12 101Chisq = 9.7, p-value = 0.04*

Resilience: Can we detect within scales?

Self-efficacy and optimismVariable study_group N Mean Std Dev Minimum Maximum p-

value* In control 62 5.5806 6.5526 0 24 Self efficacy (PAID

1,2,7,8,16,20) Out of control 39 9.2564 8.3563 0 24 0.02*

In control 54 3.7963 0.6553 0 4 Optimisim –Positive family structure (FES 1,7, 15,17)

Out of control 35 3.7714 0.7702 0 4 0.87

In control 62 6.0645 5.6128 0 20 Optimism –

Positive outlook on life (PAID 2,3,6,12)

Out of control 39 9.0513 7.082 0 20 0.03*

PAID vs PHQ

Created subscale with 7 PAID items most reflecting depression

Hypothesized these items would correlate even more strongly with the PHQ

“Depression items” of PAID no more closely correlated to PHQ than instrument as a whole

Limitations

Preliminary study intended to generate hypotheses for more formal testing

Study did not control for intrinsic diabetic disease severity, i.e., subjects with mild disease may have done well and subjects with severe disease done badly, irrespective of other barriers

Findings only relevant to patients receiving regular primary medical care

Limitations

Interviewing process used in study was less effective than intended in the following areas: where diabetes fits in to the hierarchy of multiple life

priorities impact of diabetes on and adaptations in the family individual patient suggestions for potent and

practical interventions to improve self-efficacy, family adaptability, other barriers specific to the patient/patient’s life circumstances

The Chronic Care ModelWagner EH et al.,

Improvingchroniccare.org

“Self-Management” in the Inner City Latina Context

Will need to reflect cultural meaning of diabetes, particularly the family heritage, and the personal meaning of a legacy of tragedy

Will need to consider specific dietary modifications

Will need to respect the woman’s aspirations to care for others rather than herself

Might not expect agreement on the importance of “control” of diabetes at the outset – or even for some time

Acknowledgements

Nancy Bassett Eduardo LaCalle Nellie Fernando Jason Fletcher MMG and Bronx Lebanon DRTC!