Abstract
Generativity is a main adulthood developmental task, centred on the concern to contribute for the wellbeing of younger generations, and has been associated with improved health and wellbeing. Generativity, nevertheless, has not been explored in persons with rare late-onset neurological diseases, such as transthyretin-related familial amyloid polyneuropathy (TTR-FAP). This study aims at examining generativity in older individuals with TTR-FAP and consider its association with satisfaction with life and self-rated health. The method is descriptive-comparative, using a sample of persons without family history of a hereditary disease. A total of 69 adults were recruited: 31 with TTR-FAP (through the national patient’s association); 38 non-TTR-FAP (through researchers’ social networks). Participants completed self-administered questionnaires, assessing quantitative measures of generativity (Loyola Generative Scale, LGS, Portuguese version), satisfaction with life (Satisfaction with Life Scale, SWLS, Portuguese version), self-rated health (single item of self-perceived health), and social and demographic data. Main findings indicated that (i) no significant differences were found on generativity, satisfaction with life and self-rated health between older persons with and without TTR-FAP; (ii) generativity was positively correlated with satisfaction with life and satisfaction with life was positively correlated with self-rated health in older TTR-FAP adults, but not in the non-TTR-FAP group; (iii) from linear regression models, satisfaction with life was predicted by “hereditary disease (TTR-PAF)”, “formal education (University degree)”, “professional Status (retired)”, and “age”; self-rated health was only predicted by related to “professional Status (retired)”. Results contribute to building a body of work on the development and aging psychosocial experiences in individuals from families with severe hereditary diseases. Also, they are relevant for the provision of care to people living with hereditary conditions and their families. Generative members will be better positioned and may be involved in promoting healthier behaviors in their family members.
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Acknowledgements
The authors are indebted to all the participants in this study. The authors would also like to thank to the national patients’ association (APP) for helping in the recruitment of the participants.
Funding
Carla Roma Oliveira (SFRH/BD/131925/2017) and Álvaro Mendes (CEECIND/02615/2017) are supported by the FCT (the Portuguese Foundation for Science and Technology). Pedro Sa-Couto’s work was supported in part by the FCT, through within the project CIDMA (UIDB/04106/2020 and UIDP/04106/2020). This work is also supported by FEDER, funded by the Programa Operacional Competitividade e Internacionalização—COMPETE2020 and by national funds through FCT in the framework of the project “Instituto de Investigação e Inovação em Saúde” (POCI-01-0145-FEDER-007274) and CINTESIS R&D Unit (Ref. UIDB/4255/2020 and UIDP/4255/2020).
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All authors contributed to the study. CRO, ÁM and LS contributed to the study conception and design. Material preparation and data collection were performed by CRO. All authors contributed to the analysis. The first draft of the manuscript was written by CRO and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
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Oliveira, C.R., Sousa, L., Sa-Couto, P. et al. Living with Transthyretin-Related Familial Amyloid Polyneuropathy—TTR-FAP: Generativity, Satisfaction with Life and Health Perception in Older Affected Individuals. J Adult Dev (2023). https://doi.org/10.1007/s10804-023-09459-2
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DOI: https://doi.org/10.1007/s10804-023-09459-2