Table 3.

Summary of themes and quotes

Themes	Participant quotations
1. Usefulness of the programme
Enhancement of well-being	“Support outside the biomedical scope, involving psychologists and social workers, are always useful because sometimes people need to cope with difficult decisions and these interventions help to relieve stress”.
	“We need to look for the entire individual”.
Mutual support	“People may feel bonded and close to others dealing with similar challenges, especially because we are talking of relatively rare diseases”.
	“I believe this can be very therapeutic as in many cases these families feel isolated and stigmatised”.
2. Programme’s methodological and practical obstacles
Lack of quantitative outcomes	“A pre- and post-test would be important to measure modifications in key outcomes, such as psychological adjustment or in information management”.
	“The quality of the genetic counselling people had before will influence how intervention impact participants”.
Sampling and generalisation	“Participant families were probably the more adjusted, with more socio-economic conditions, and the more motivated”.
Recruitment and mobilisation	“I believe that few families are available to be part of an intervention for a month, two hours every week (…) it is very intensive and impossible to universalize”.
	“It’s not eminently medical, so people will not consider it as absolutely necessary (…) most of these people are active, they work, and in many cases they fear problems at working places because the justifications”.
Group setting constraints	“Some people may feel uncomfortable talking in front of others (…) it is impossible to assure confidentiality in a group setting”.
3. Genetics services constraints
Scarcity of qualified human resources	“A multidisciplinary team here [in the genetics service] would be vital, with psychologists working fulltime rather than being called from other services; we neither have time or training to do it”.
Physical barriers	“We are facing other needs, such as physical space, available at the hospital”.
Funding	“Usually this kind of interventions are developed in the scope of research projects with someone highly motivated, but afterwards things do not go further and people cannot benefit anymore once its over”.
4. Suggestions for improving the programme and futher family-oriented interventions
Partnerships with community-based services	“I conceive this type of intervention more in the scope of community- based services or patients representatives than at the hospital setting, which may dissuade participation from other family members”.
	“It could be interesting to perform follow-ups to assess new concerns and relevant information”.
Genetic counsellors	“I am optimistic because we’ve started to produce genetic counsellors; they should be encouraged to integrate family-based concepts in genetic counselling training and practice”.