Appendix Table.

MAJOR THEMES FROM CONTENT ANALYSIS OF FOCUS GROUPS WITH AFRICAN AMERICAN, ASIAN, CAUCASIAN, AND LATINA WOMEN

	African American (N=10)	Asian American (N=10)	Caucasian (N=5)	Latina (N=26)
Health Beliefs: Factors Helping Recovery and Coping	Self-awareness: Be aware of changes in body Prompt medical attention: Go to the doctor as soon as you notice a problem	Adherence: Obey doctors’ directions re: treatment Check health every 3 months	Keep normal life Doctor support Obtain 2nd opinion Education about cancer Contact with others who have had same illness	Children: Desire to see children grow up Lack of support: difficult recovery, more depressed Positive attitude, faith Surgery, treatment most important to survival
Support from family and friends	Family support: very important, but sometimes keep information to self, don’t want sympathy Partner support: one had supportive boyfriend; one husband not fully supportive/understanding Friends: Share with only few trusted people	Family support: important in coping, recovery Spouse support: one felt husband provided most support, this was most important Friends’ support: All felt provided a lot of support	Spouse: keep normalcy in life; kept positive attitude Family: helped keep them going; stayed at hospital, accompanied to appts Children: did chores, cook Friends: helped provide information about cancer Mother: emotional support, cooked meals	Family: helps adherence, recovery; don’t feel alone; accompany to dr visits Concern of worrying family: may delay disclosing illness or problems, reject support Spouse: provide will to survive, emotional stability Friends: able to talk about private issues
Person Most Supportive	Mothers: very supportive; one is a nurse, helps explain medical info Boyfriend: offered to go to doctor’s appointments Other family: son, sister, aunt, cousin	Husband: All felt were most supportive Mothers: also very supportive Children: Daughter is a doctor; persuades her to go to doctors’ appointments		Siblings Friends: provide emotional support Immediate family Husband: most important; financial support Children
Spirituality, Religion and Illness	Prayer: very important to ask God for assistance Religion: guidance in what to do to prevent and heal illnesses	Able to tell God when one is in pain Gain confidence from faith	Prayer gives comfort/peace Priest’s support 2 did not rely on faith or prayers Visualization of healing	Support, catharsis: through church; comfort in prayers, reduce fear God’s will: fate is up to God, accept His decision
Handling a Major Illness	Quarantine until you go to doctor Go to the doctor	Positive attitude Keep peace Faith: Thankful to God Husbands’ support most important	Get best doctor Be proactive, not reactive: get 2nd opinion, follow-ups; gives a sense of control Positive attitude	Get treated Get stronger Healthier diet Be involved in health care Family support Gods’ will most important
Control over Your Body and Illness	Cleanliness, disinfection Act quickly to changes Try to stay healthy, but no total control over illnesses	Control through diet Obey doctors’ instructions Keep internal peace Engage in exercise	Not much control—healthy diet, exercise, obtain annual pap smears Information gives control	Getting treatment Better hygiene before sex No control over cancer Sexual habits, diet
Fears about Cervical Cancer/Dysplasia	Distrust doctors: don’t Provide information (prevention); harsh use of instruments Recurrence, dying	Fear of dysplasia turning into cancer	Dying, painful death Recurrence Fear of the unknown Isolation	Dying: concern with who will care for loved ones Metastasis Daughters may get CCA
Health Socialization Childhood Learning About Health; Traditions and Values; Family Sayings	Diet: Eat fruits/vegetables drink a lot of water Exercise Regular doctor’s visits Cleanliness	Illness unrelated to traditions; don’t blame yourself Diet: Fruits/vegetables helps health; avoid pineapple Early treatment: deal with symptoms before severe Personal hygiene: keep clean, wash hands often		No discussion on health: parents unaware, priority on family activities Uncomfortable with exam, seek care when problem Cause of CCA: Having kids young, close together Myths: married w/children, abstinent, not at CCA risk Diet: Avoid cold fruits, lemon during menstruation
Relationship Issues: Intimate Relationship Single	Loss of sexual interest; fear that sex will worsen condition Still interested in having sex but no available partner	All married	Not involved in a sexual relationship	Some men see women with hysterectomy as in-complete Belief that CCS lack sexual desire Vaginal dryness affects intimate relations Excuse for men to leave
Intimate Relationship Married	No sexual desire: force self to have sex and wait until he’s finished	None felt illness affected relationship Negative effect: No libido Psychological effect: results in decrease in sex	Negative effect: husband left; difficulties with intimacy Treatment shrinks vagina, sex painful, lack of desire after removal of ovaries, lack of hormones	Positive effect: stronger relationship Relieved to not have sex Negative effect: Guilt over inability to have sex Fear pain during sex Fear sex worsens illness Concern husband will leave
Feelings About Her Body	Feel unclean Worn out and beaten One noted no change	None felt dysplasia affected feelings about their bodies so far	Feel damaged; scar Losing fertility like losing a child	More concerned with effect on sexual relationships, emotional feelings
Quality Of Care Participation in Medical Treatments	Doctors don’t provide information or explain things understandably Important to ask questions and speak up Insensitive medical staff	Depends on the severity. If severe, cannot do much Just listen to the doctor	Aggressive participation Involvement in health care: ask questions, find out about side effects, be informed	Knowledge: of illness, consequences increase timely care-seeking Postponed treatment due to denial, problems with kids Uncomfortable with exam of private parts: avoid pap test Screening ineffective Be aware of changes, seek care, annual exams. Accept diagnosis
Doctor Recommendations	Follow-up was the only recommendation Many want more health recommendations	Diet: Drink more water Exercise Provided with ointment		Diet: Eat healthier No recommendations, but decided to eat healthier Exercise: increase activity
Followed Doctor’s Recommendations	All the women now come to follow-ups One avoided follow-ups due to insensitive staff, fear of finding out condition	All say they follow doctors’ recommendations		1/3 follow recommendation 1 ignored diagnosis until more advanced; willing to comply after seeing disabled CCA patients
Support By Doctor	Didn’t feel much support	All feel doctors provided support to follow recommendations Drs did not provide any special help	Some felt doctor was supportive One was not informed about lymphodema and preventative care	Some felt doctor did not provide support, esp. those seen by different doctors A few received support None knew about support groups prior to focus group
Relationship With Doctor	Doctors are nice but don’t explain test results One noted that doctors need to be more gentle with instruments	All feel relationship with their doctors is good Doctors show that they care Feel comfortable with their doctors	Some have good relationship with doctor Some felt that their doctors did not give complete exam – tumor not detected early, no follow-up for abnormal	Concern over continuity, quality of care: 1/3 see different doctor each time Embarrassed to ask questions during exams Time concerns: insufficient time with doctor; long wait Language barriers With Spanish-speaking Dr: able to ask questions, understand treatment; more optimistic, compliant
Felt Treated Differently; Discrimination	One noted being passed over in a clinic where staff, clients were Latino	None felt discriminated against Doctors provided good care even though uninsured		None felt treated differently or discriminated against
SES: Factors Affecting Quality of Treatment	Low income/uninsured: Poorer quality of treatment at clinics	None felt financial status, educational level or insurance status affected quality of treatment	Time concerns: gyn drs who are also obstetricians do not spend a lot of time performing pap test	Doctor competency Lack of continuity of care: patient insecurity Language barriers: translator inadequate Access to care: long wait creates stress, poor out-comes; lack of childcare, transportation results in treatment postponement Finances: delay in obtaining care if can’t afford
Socio-Ecological Factors: Overall Stress; Effect on Overall Life	Caring for children: lack of time for self Fear of medical condition Pain: dysplasia made life more difficult (intense pain); one told to lose weight but no diet has been effective	Reduce stress by talking to others Several felt housekeeping stressful, boring and tiring Work and life cause stress Those with dysplasia: no effect on life yet	Stress: possible cause of cancer, may cause recurrence, but stress is hard to reduce Change in priorities: in goals, desire to ‘give back’ Became stronger person Feel lucky – losing uterus is small price to pay Treatment side effects – painful to walk, intestinal problems	Recurrence-related stress Worry over family: being unable to care for children Fear of incapacitation Hard to manage without support system Feel empty after surgery. Keeping illness private: difficult to do with hair loss Depression: hide problems to avoid worrying family Keep busy with chores to avoid thinking about illness
Neighborhood Stress	No effect on stress level	No effect on illness Violence on TV, neighborhood thefts, but not worried about safety Neighborhood quality good Concern about pollution causing cancer	No concerns	Concerned with others’ perceptions: stressed, depressed, ashamed: don’t want neighbors to know about illness or to gossip Unsatisfied with safety of neighborhood for children A few not concerned
Supervisor Co-Worker Support	One is a homemaker, has little energy for housework Two did not work One had difficulty with supervisor not allowing her to go to appointment until told it was the law	Most did not disclose illness to employers One told supervisor, coworkers: not much support Disclosure helpful if going through same experience or for advice on treatments	Coworkers worry, treat differently – think she will get sick again, not as strong, they ‘mother’ her	2 disclosed, received support from employer, job available after recovery Co-workers gave money 2 laid off due to illness: time missed for treatment, appts 2 not working at diagnosis
Doing Same Work	Doing same work	All are doing same work	Had to retire early Cut down on work during surgery, recovery period	None currently working due to treatment, difficulty in getting job, or being a caregiver for ill husband
Concerns about Maintaining Job	No concerns	No concerns or effects on job due to the dysplasia	No concerns	Most have no concerns One worried about lack of income, financial problems
Employment Discrimination	No employment discrimination	No discrimination, they have not had the illness for very long yet		Don’t know how to identify discrimination None felt discrimination
Other Issues	No additional issues	Concerns about hormone treatment: worry about side-effects		Concern about CCA heredity
Most Important Concerns	Prevention; how to keep from coming back Treatment options Staying healthy Family Mental, physical, emotional health Economics	Finances: lack of money, ashamed to ask for help Inactivity: causes depression if isolated at home Exercise: to improve life expectancy Diet: avoid ‘poisonous’ foods; drink more water; eat healthier; worry about diet being cause of dysplasia Health		Children, family health and well-being Health, side effects of treatment Financial concerns Diet Insurance Hair loss Family knowing about the disease CCA being hereditary
How Felt At Conclusion	Concerned about coming, fear of being judged; but felt understood and not alone at conclusion.	All felt fine, peaceful		Feel good, better after talking, impressed with the questions asked, they have never thought about