From older to younger: intergenerational promotion of health behaviours in Portuguese families affected by familial amyloid polyneuropathy.
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.
Department of Medical Sciences, University of Aveiro, Portugal.|Associação dos Lares Ferroviários, Entroncamento, Portugal.
Carla Roma
CR
Oliveira
i3S-Instituto de Investigação e Inovação em Saúde; IBMC-Institute for Molecular and Cell Biology, UniGENe and Centre for Predictive and Preventive Genetics (CGPP); Universidade do Porto, Porto, Portugal.
Alvaro
A
Mendes
Department of Education and Psychology, Center for Health Technology and Services Research (CINTESIS), University of Aveiro, Aveiro, Portugal.
Liliana
L
Sousa
D000293:Adolescent; D000328:Adult; D000368:Aged; D028227:Amyloid Neuropathies, Familial / Q000235:genetics / Q000517:prevention & control / Q000523:psychology*; D001290:Attitude; D005190:Family / Q000523:psychology*; D005260:Female; D006293:Health Promotion; D000070497:Healthy Lifestyle; D006801:Humans; D016901:Intergenerational Relations; D008297:Male; D008875:Middle Aged; D010375:Pedigree; D011174:Portugal