From older to younger: intergenerational promotion of health behaviours in Portuguese families affected by familial amyloid polyneuropathy

Abstract

The role of older generations in families with hereditary diseases has been recognised and associated to their function as guardians of the family's medical history. However, research is scarce in examining the roles that older generations play in terms of health promotion and risk management towards younger generations, which is particularly evident with incurable genetically inherited disorders such as familial amyloid polyneuropathy (FAP) ATTR Val30Met. This qualitative exploratory study examines the roles that older generations play towards younger generations, in terms of health promotion and risk management, in families with FAP. It also explores the intergenerational flow by analysing who from the older generation plays what role(s) towards whom from the younger generation. This study adopts the critical incidents technique. The sample comprises 18 participants that reported 76 critical incidents. The interviews were audio-taped and submitted for content analysis with the main findings suggesting four roles performed by the older family members towards the younger ones: modelling, encouraging, informing and supporting. The intergenerational flow takes place mostly between women, from mother to daughter, and from older affected individuals to young pre-symptomatic carriers. The older generations can be involved in the clinical practice as partners in supporting younger relatives in families with FAP. Clinical genetic services and the health-care system more broadly might want to consider these roles and the intergenerational flow of support so that this information can be used to maximise health promotion behaviours in at-risk families.

Communication of Information about Genetic Risks: Putting Families at the Center

“…Open communication www.FamilyProcess.org 840 / FAMILY PROCESS allows family members to develop a shared understanding and support one another, becoming more likely to cope and adapt well to living with the genetic condition or its risk and establishing more resilient relations (Hoskins, Roy, Peters, Loud, & Greene, 2008). Open communication tends to occur more frequently among women, first-degree relatives, or spouses (Oliveira, Mendes, & Sousa, 2017), while those under 18 years are less likely to be given information (Van Oostrom et al, 2007). Approximately 40% of parents do not talk to their children about their family's condition, although most would like to be able to do so (Metcalfe, Coad, Plumridge, Gill, & Farndon, 2008).…”

Family dynamics in transthyretin‐related familial amyloid polyneuropathy Val30Met: Does genetic risk affect family functioning?

“…When a disease is recognized for several generations, an acquired “pattern” of transgenerational family structuring may occur and be determinant, less pathologic and more adaptive. In fact, an intergenerational flow of support and promotion of healthy behaviors across generations were described by Oliveira et al This intergenerational knowledge, along with a connected functioning in those families may act as a protective factor, contributing to more balanced results.…”

“…20 A study of Portuguese TTR-FAP Val30Met patients on transgenerational aspects of the illness to understand the role of older generations has shown that there was an intergenerational flow of support, and that communication was higher among affected members and between mothers and affected daughters. 21 The aims of this study were to (1) evaluate how TTR-FAP Val30-Met affected patients and pre-symptomatic carriers perceive their family´s functioning, (2) compare the perception of the family system by these two groups to that of their partners, and (3) compare the above mentioned perceptions to those of patients with multiple sclerosis (MS).…”

“…A study of Portuguese TTR‐FAP Val30Met patients on transgenerational aspects of the illness to understand the role of older generations has shown that there was an intergenerational flow of support, and that communication was higher among affected members and between mothers and affected daughters …”

Choosing not to know: accounts of non-engagement with pre-symptomatic testing for Machado-Joseph disease

“…This exploratory, qualitative study was drawn from a larger empirical study examining processes of communication of information about genetic risks in families affected by LONDs, including familial amyloid polyneuropathy TTR Val30Met, HD and MJD [22][23][24]. We present here the subcorpus of data focusing on decisions of non-engagement with PST, a relevant theme that emerged during that analysis, drawing on data from families with MJD (the majority in that study).…”