Table 3.
Facilitators | Disclosure of genetic information to relatives | Uptake of genetic testing by relatives | ||||
Probands only | Relatives only | Probands/Relatives | Probands only | Relatives only | Probands/Relatives | |
Individual facilitators | ||||||
Demographics | ||||||
Age | Pos (High)20 | NS13,21 | NS20,17 | |||
Gender | NS28 | Pos (Female)22 | NS17, Pos (Female)23, Pos (Asian)20 | |||
Race/Ethnicity | Pos (Asian)20, NS (Latina)20, NS (African American)20 | NS13 | NS (Latina)20, NS (African American)20 | |||
Income | Pos (High)13 | NS17 | ||||
Education | NS21 | Pos (College Degree)17 | ||||
Employment | NS21 | |||||
Marital Status | Pos (Married)13 | Pos (Married)17 | ||||
Socioeconomic status | NS20, Pos (High)20 | Pos (High)20 | ||||
Clinical factors | ||||||
Personal history of disease | NS22,28 | NS13,21 | NS20,17, Pos25 | |||
Family history of disease | NS21 | |||||
Smoking | NS13 | |||||
Prior history of risk factors | Desc19 | |||||
Genetic test results | Pos (unambiguous)22, NS (inconclusive)22 | |||||
Knowledge | ||||||
Knowledge/Perceived knowledge | Pos (High)20 | |||||
Perceived susceptibility | Desc (High)21 | |||||
Attitudes, beliefs and emotional responses of the individual | ||||||
Distress | NS22 | |||||
Wanting to know | Desc20 | Desc33 | ||||
Intrinsic motivation | Desc21 | |||||
Perceived control | Pos (High)22 | |||||
Forced by circumstances | Desc33 | |||||
Need for emotional support | Qual24, Desc28 | Desc35 | Desc20 | Desc18 | ||
Satisfaction with decision to undertake genetic testing | Pos (High)20 | Pos (High)20 | ||||
Perceptions of relatives, relatives’ reported responses, and attitudes toward relatives | ||||||
Relatives’ right to know | Qual29 | Desc34 | Qual23, 24 | |||
Moral obligation toward relatives/Duty to inform | Desc35 | Desc14,21 | Desc18,26,34 | Qual31 | ||
Feeling that information will help in making medical decisions or lifestyle | Desc35 | Desc14 | Qual27,31 | |||
Concern about relatives | Desc29 | Desc20 | Qual23 | |||
Desire to prevent harm in the family/Duty to protect | Desc35 | Desc18 | Qual15,27 | |||
Need to understand the disease/help from relatives | Desc28 | Desc16 | ||||
To avoid feeling the same sorrow | Desc16 | |||||
Interpersonal facilitators | ||||||
Family communication, support and dynamics | ||||||
Perceptions of relatives’ opinion on genetic testing | Pos (Extremely or somewhat in favor)22, NS (Opposed/Neutral)22 | |||||
Degree of closeness/Relationship to the patient | Pos (children)22, NS (siblings)22, Desc14 | Pos (Siblings)23, Pos (Aunt/Uncles)23, NS (Grandparents)23, Pos (FDR of patient with disease)25, Pos (FDR of proband)25 | ||||
Monitoring relatives’ coping status | NS22 | |||||
Provide relatives with information about risk | Desc28 | Desc14 | ||||
Encourage relatives to get testing | Desc28 | Desc14 | Desc34 | |||
Active and open communication | Qual29 | |||||
Solidarity with family | Desc33 | |||||
Support from family members | Desc47 | |||||
Provider factors | ||||||
Materials to pass to relatives (Genetic counseling note, Family letter, Personal note from proband, Information/report from lab, Online resources, Support group information) | Desc35 | Qual26 | Desc22 | |||
Referral to genetics clinic | Desc22 | |||||
Physician recommendation | Qual24, Desc28 | Desc21 | Desc16 | |||
Assistance in identifying relatives at risk | Desc35 | Desc26 | ||||
Assistance in making contact with relatives (physician or hospital) and dissemination plan | Desc35 | Desc21 | Qual15, 23,24 | |||
Provider follow-up | Desc47 | |||||
Speaking with a genetic counselor | Desc35 |
Pos– positive, NS– not significant, Desc– barrier or facilitator described in descriptive studies, Qual- barrier or facilitator described in qualitative studies.