From older to younger generations: Intergenerational transmission of health-related roles in families with Huntington's disease

Abstract

Background and objectivesOlder generations play relevant roles in the well-being of younger generations, namely by influencing their health management. Literature regarding the influence in families affected by highly incapacitating hereditary diseases, such as Huntington's disease (HD), however, is scarce. This study addresses the intergenerational flow of health-related roles, from older to younger generations in families with HD, that is, who plays what roles towards whom while considering age, gender, kinship and genetic status in both generations. Research design and methodsThis qualitative exploratory study adopted the critical incidents technique, applied through semi-structured interviews. Ten participants reported 189 critical incidents. Thematic analysis was applied to transcript data from the interviews to glean common themes. ResultsThe main findings suggested two main roles performed by older generations: “shaping awareness” and “influencing management”. The intergenerational flow involved mainly women, in contiguous generations (usually mother-to-daughter); it was more frequent from either older non-biological or affected relatives aged ≥60 years towards younger members aged 20–29 years, who were still at-risk or non-carriers. Discussion and implicationsOlder generations are relevant influencers in the health management of their younger relatives and they create illness-related legacies. The results are relevant for healthcare services and professionals, as they bring further insight into how older relatives may be involved in genetic counselling, as well as insight into the provision of psychological support to affected families.