Table 1.

Common challenges to genetic counseling understanding and compliance as well as strategies to address them

Challenges to understanding/compliance	Representative comments from the Task Force	Contributing factor(s)	Strategies
Patient and family counseling
Belief that witchcraft or a curse caused disease	‘We need to separate retinoblastoma from taboo, tradition and spirituality. Don’t deny people’s beliefs. Don’t tell people they are a fool. Explain to them, then let them realize it themselves.’ ‘You have to tie their beliefs [i.e. curse, witchcraft] into your explanation [i.e. of genetics].’	Culture, education	Identify metaphors/language in Kenyan communities that could be used to describe common traits
Difficulty in grasping genetic concepts (e.g. ‘mutation’, ‘percent risk’, ‘inheritance’)	‘You ask for family history, parents won’t know, because they won’t include a child with retinoblastoma in the clan record if they think it’s witchcraft.’	Culture, education	Conduct focus groups with patient families to identify and address: origin and reasoning behind beliefs that affect how families understand genetic disease, and psychosocial needs of families during genetic diagnosis/counseling
Lack of direct translation in local dialects for words such as ‘genes’, ‘chromosomes’, etc.	‘Explain that eye color and heights are controlled by genes which you get from dad and mom. These genes result in diseases. Retinoblastoma is one of these diseases.’	Culture, education
Emotional distress, ineffective coping with diagnosis	‘What we are doing right now is really not sufficient. We are not helping with the psychosocial needs of the mother.’	Education, psychosocial	Develop tools and incorporate a user-focused approach to counseling
Community involvement
Inferior role of women in some societies/households may affect how a mother discloses a genetic diagnosis to her family, or how a family internalizes a diagnosis (i.e. blames the mother for ‘causing’ the disease)	‘Traditionally, society thinks the mother is to blame, just like infertility.’ ‘We need to involve fathers, because they are the decision makers. Especially when husbands support views opposite to those of the doctors.’ ‘Mothers don’t want to be associated with “running in the family” [inheritance], or else husbands can just blame her and remarry. We need to decide carefully how much information is released to the parents [in terms of who carries the mutation].’	Culture, society	Determine how local opinion leaders and traditional healers could complement the counseling approach Design and test a counseling/educational approach that includes fathers, extended family, local opinion leaders, etc. Develop and test a peer-to-peer genetic education program, with outreach components to serve those who live away from a clinic
Extended family (e.g. grandparents, uncles, aunts, other elders) beliefs/understanding of a disease determines the compliance with treatment/screening; parents of an affected child obey the instruction of elders, whether or not they understand/wish to comply with a medical opinion	‘People around the mother influence her decisions a lot … so it is important to have opinion leaders and healthcare workers in the community to support the mother.’	Culture, society
Families live too far from a clinic to attend frequent counseling sessions	‘If the parents come to Nairobi once, and we don’t find any disease this time. Then the parents will think the child will always be all right. Then they will never come back. So asking the parents to always come to Nairobi is not possible.’	Socioeconomic
Medical education
Timing of counseling is at or near diagnosis, and too stressful to facilitate uptake/understanding by parents	‘We need someone who can sit down and spend the time to go through all the concerns of the mother.’	Healthcare system	Develop a multidisciplinary genetic counseling support team Develop tools to assist in knowledge and practice of medical genetics, testing, counseling Pursue a global-to-local approach to make genetic services accessible to Kenyan families; connect to capacity building efforts in African genomics technologies
Lack of genetic counseling training/positions	‘In every discipline in Africa, doctors are overwhelmed. It’s not an excuse. We can use counselors and other healthcare providers. You have a team that you work with, that’s what happened with diabetes.’ ‘We need to educate the health workers, e.g. nurses, clinical officers, who interact with mothers everyday. They see a lot of people in one day.’ ‘There isn’t a formal program or institution which can provide the counseling. We [treating physicians] sometimes base our counseling on parents’ attitudes. When the parents resist, we’ll give them some time, then try again. And we also tell the nurses, and let the nurse convey the information.’	Healthcare system
Lack of medical genetics training/positions	‘Even doctors don’t understand it [retinoblastoma genetics], so they don’t embrace it. They feel that it is a burden and resist it.’ ‘Counseling we do. But if we can map the genetics of the parents, that will be better. If we can really see if there’s a predisposition.’	Healthcare system
Limited genetic testing facilities	‘You can’t create all the genetic information without giving them the services. You can’t tell them you have to go to India, Europe, etc.; they can’t even go to Nairobi.’	Healthcare system