Table 3 Qualitative and mixed method studies summary

Chinese Australian

Barlow-Stewart et al. (2006)

[64]

Australia

General

(n = 15)

Chinese Australians

73.3% female

3 participants with some degree of family history of cancer.

Age range = mid 20s – mid 80s

60% had a low acculturation level

Explored inheritance and kinship in relation to hereditary cancer.

Ethnographic methods were used.

Interviews took place at participants home in language of their choice.

The interviews were recorded and a synopsis was produced for each participant.

• Patrilineal concept of kinship.

• A weakness in the line.

• Definitions of blood relatives and marriage between relatives.

• Beliefs about hereditary cancer.

• Interest in attending a familial cancer service.

Eisenbruch et al. (2004)

[62]

Australia

General

(n = 16)

Chinese Australians

87.5% female

All had family history of cancer.

6 personally affected by cancer.

Average age = 43.4 years

87.5% had post school education

Explored beliefs about inheritance of cancer.

Ethnographic methods were used.

Interviews took place at participants’ location of choice and in language of their choice.

The interviews were recorded and a synopsis was produced for each participant.

• Cancer - Naturalistic explanations.

• Inheritance and hereditary (genetics) - Concepts of genes and inheritance.

• Genetic testing.

• Kinship issues and impact on eliciting family history.

• Non-penetrance of mutations - concept of skipping generations.

• Concept of spontaneous mutations followed by inheritance through the generations.

• Hereditary cancer.

• Screening and surveillance.

African American

Adams et al. (2015)

[35]

USA

Breast and ovarian

(n = 50)

African American

Female

6 participants were cancer survivors.

Average age = 46–55 years

98% had health insurance

82% had at least some college education

86% had an annual income >$35 k

Explored women’s awareness and perceptions of BRCA testing.

Participants were recruited in community settings.

Survey/interviews completed on-site.

The researcher made notes.

• Quantitative results: 54% had heard of genetic testing for breast and ovarian cancer risk; 12% had heard of BRCA1/2

• Qualitative themes: knowledge: current and desired; perceived advantages and disadvantages; barriers and motivators to participating in genetic testing.

Ford et al. (2007)

[65]

USA

Breast

(n = 20)

65% African American

35% White

All at risk for breast cancer.

Average age ≤ 50 years

Investigated experiences of women who accepted genetic testing and those that did not despite being eligible.

3 focus groups conducted at a clinic:

1.African American women who had attended genetic counselling

2.African American women who had not attended genetic counselling

3.White women who had not attended genetic counselling

Questions and analysis were based on the Preventative Health Model. The focus groups were recorded and transcribed.

• Perceptions of breast cancer.

• Knowledge of breast cancer and screening.

• Perceived susceptibility to breast cancer.

• Worry about having breast cancer.

• Interest in knowing genetic susceptibility.

• Belief in breast cancer prevention and curability.

• Belief in efficacy of detection and treatment in reducing breast cancer mortality.

• Belief in self-efficacy related to behaviour.

• Concern about behaviour related discomfort.

• Support and influence of others.

• Characteristics of health care delivery systems.

• Reasons people would/would not go to genetic counselling.

• Benefits of counselling.

Sheppard et al. (2014)

[60]

USA

Breast and ovarian

(n = 21)

African American

Female

All with moderate to high risk of hereditary breast cancer.

Average age = 38% 56–65 years

86% had some college education or more

95% had health insurance

90% had an annual income >$35 K

Explored awareness and factors that may influence uptake of genetic testing.

Participants were recruited through community organisations, word of mouth and from previous research.

Tape-recorded focus groups were carried out at a library, transcribed, and analysed.

• Motivators and barriers to genetic counselling/testing

• Desired information about genetic counselling/testing

• Women’s attitudes towards genetic counselling/testing

• Information seeking and knowledge about genetic counselling/testing

Matthews et al. (2000)

[52]

USA

Breast, ovarian, colon and prostate

(n = 21)

African American

62% female

95% had a family history of cancer.

Average age = 42 years

66% had at least some college education

16% had an annual income ≥$35 k

Investigated informational needs regarding genetic testing for cancer risk.

Participants were recruited through newspapers, hospitals, churches, radio, bulletins and fliers.

Involved a questionnaire and focus groups.

Quantitative results:

• Factors rated as important to participants’ decision to take part in testing (mean rating out of 5):

Results will inform about their children’s risk (4.7)

Results will inform whether other members of the family should be screened (4.6)

Concern about how results will affect them (4.6)

Concern of how results will affect family (4.5)

Test will help plan for the future (4.4)

Test results will be reassuring (4.2)

Results might not be accurate (3.9)

• Less important factors:

Not believing that cancer can be prevented (3.4)

Distrust, fear, or both of Hospitals or Physicians (3.3)

Distrust, fear, or both of modern science or medicine (2.9)

Not wanting others to know test results (2.6)

Worry about losing insurance (2.6)

Qualitative themes:

• Lack of awareness

• Communication about cancer

• Perceptions about whether cancer is survivable

• Emotional reactions to the process of genetic screening

• Disillusionment with the medical and research communities

• Testing procedure and printed materials

Hispanic

Sussner et al. (2015) [61]

USA

Breast and ovarian

(n = 54)

Hispanic

Female

All high risk based on family history of cancer.

26 had a personal history of breast/ovarian cancer.

Average age = 49.9 years

48.1% had more than a high school diploma

92.9% had health insurance

40% had an annual income ≥$20 k

Explored beliefs and attitude about BRCA genetic counselling.

Conducted focus groups (n = 54) and in-depth interviews (n = 30).

Focus groups and interviews were conducted in Spanish or English.

Interviews were conducted in person or over the phone. Interviews/focus groups were transcribed, translated, and analysed.

• Illness prevention

• Personal and community knowledge about BRCA genetic counselling

• Perceived benefits to BRCA genetic counselling

• Cultural influences on genetic counselling participation

• Influence of previous interactions with the healthcare system

Vadaparampil et al. (2010)

[67]

USA

Breast and ovarian

(n = 53)

Hispanic

Female

All high risk of hereditary cancer.

20.8% had breast cancer and 3.8% had ovarian cancer <50 years old.

Average age = 32.1% 35–44 years

52.9% had at least some college education

56.6% had health insurance

52.8% had an annual income >$20 k

Explored awareness and perceptions of genetic testing for hereditary breast and ovarian cancer.

Recruited from community organisations and through media.

In-depth interviews conducted with participants at a location of their choice and in the language of their choice.

The interviews were recorded, transcribed, and analysed.

• Cancer risk factors

• Knowledge of genetic testing

• Concerns about genetic testing

• Medical Doctor ever recommended genetic testing

• Preferred type of medical doctor recommendation

• Questions about genetic testing

• Tell a friend about genetic testing

Kinney et al. (2010) [66]

USA

Breast and ovarian

(n = 51)

Hispanic

56.9% female

8% with personal history of cancer,

20% with family history of cancer.

Average age = 42 years

Explored attitudes and informational needs relating to hereditary cancer and genetic testing.

5 focus groups conducted at a community centre

1. Women with high-school education or less (n = 11)

2. Women with some secondary education (n = 11)

3. Men with any educational background (n = 14)

4. Men with leadership positions in local community organizations

(n 8)

5. Women with leadership positions in local

community organizations

(n = 7).

Discussions were conducted by bilingual researchers, tape-recorded, and transcribed in English.

• Attitudes/beliefs about cancer.

• Awareness of and attitudes toward hereditary breast and ovarian cancer and genetic testing.

• Preferences regarding medical management for hereditary breast and ovarian cancer.

• Barriers to early detection and risk reduction services

• Communication issues and preferences.

Multiple groups

Glenn et al. (2012) [63]

USA

Breast and ovarian

(n = 33)

51.5% Asian,

24.2% African American,

15.2% Hispanic

9.0% White

Female

23 breast/ovarian cancer survivors,

10 high risk based on family history.

Average age = 51.9 years

87.9% had health insurance

39.4% had a college education

33.3% had an annual income >$50 k

Explored potential barriers and facilitators to genetic testing.

Participants identified through community organisations.

Interviews were conducted by bilingual researchers, tape-recorded and transcribed in English.

• Beliefs about risk factors

• Awareness of genetic testing.

• Interest in genetic counselling/testing.

• Cultural factors involved in genetic counselling/testing.

• Perceived benefits of testing.

• Perceived barriers to testing

• Opinions about options following testing.