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.
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References
Adams D, Suhr OB, Hund E et al: First European consensus for diagnosis, management, and treatment of transthyretin familial amyloid polyneuropathy. Curr Opin Neurol 2016; 29: S14–S26.
Andrade C : A peculiar form of peripheral neuropathy. Brain 1952; 75: 408–427.
Sousa A : Epidemiologia genética da polineuropatia amiloidótica familiar. Sinapse 2006; 6: 74–79.
Sequeiros J : Protocolo geral do programa nacional de teste preditivo e aconselhamento genético na doença de Machado-Joseph. In Sequeiros J (ed.) O Teste Preditivo da Doença de Machado-Joseph. Porto: UnIGENe, IBMC, 1996; pp 123–149.
Carvalho F : Preimplantation genetic diagnosis for TTR-FAP in Portugal. Orphanet J Rare Dis 2015; 10: I5.
Mendes Á, Paneque M, Sousa L, Clarke A, Sequeiros J : How communication of genetic information within the family is addressed in genetic counselling. Eur J Hum Genet 2016; 24: 315–325.
Koehly LM, Peters JA, Kenen R et al: Characteristics of health information gatherers, disseminators, and blockers within families at risk of hereditary cancer: Implications for family health communication interventions. Am J Public Health 2009; 99: 2203–2209.
Mendes Á, Sousa L : Families’ experience of oncogenetic counselling: accounts from a heterogeneous hereditary population. Fam Cancer 2012; 11: 291–306.
Palmquist AEL, Koehly LM, Peterson SK, Shegog M, Vernon SW, Gritz ER : «The cancer bond»: exploring the formation of cancer risk perception in families with Lynch syndrome. J Genet Couns 2010; 19: 473–486.
Christophe V, Vennin P, Corbeil M, Adenis C, Reich M : Social sharing of genetic information in the family. J Health Psychol 2009; 14: 855–860.
Ersig AL, Williams JK, Hadley DW, Koehly LM : Communication, encouragement, and cancer screening in families with and without mutations for hereditary nonpolyposis colorectal cancer: a pilot study. Genet Med 2009; 11: 728–734.
Ashida S, Schafer EJ : Family health information sharing among older adults: reaching more family members. J Community Genet 2015; 6: 17–27.
Rodríguez VM, Corona R, Bodurtha JN, Quillin JM : Family ties: the role of family context in family health history communication about cancer. J Health Commun 2016; 21: 346–355.
Hovick SR, Yamasaki JS, Burton-Chase AM, Peterson SK : Patterns of family health history communication among older African American adults. J Health Commun 2015; 20: 80–87.
Theurer K, Wister A : Altruistic behaviour and social capital as predictors of well-being among older Canadians. Ageing Soc 2010; 30: 157–181.
Guerra S, Figueiredo D, Patrão M, Sousa L : Family integrity among older caregivers of relatives with dementia. Paidéia 2016; 26: 15–23.
Ashida S, Wilkinson AV, Koehly LM : Motivation for health screening: evaluation of social influence among Mexican-American. Am J Prev Med 2010; 38: 396–402.
Warren-Findlow J, Seymour RB, Shenk D : Intergenerational transmission of chronic illness self-care. Gerontologist 2011; 51: 64–75.
Flanagan JC : The critical incident technique. Psychol Bull 1954; 51: 327–358.
Tripp D : Critical Incidents in Teaching. London: Routledge, 1993.
Sousa L : Beliefs and values of family doctors and multi-problem poor clients. Quality in Primary Care 2007; 15: 277–283.
Schluter J, Seaton P, Chaboyer W : Critical incident technique. J Adv Nurs 2008; 61: 107–114.
Warren-J L, Miller K, Warren A : African American women's retrospective perceptions of the intergenerational transfer of gynecological health care information received from mothers. J Fam Commun 2010; 10: 81–98.
Mason M : Sample size and saturation in PhD studies using qualitative interviews. Forum Qual Soc Res 2010. Available at: http://nbn-resolving.de/urn:nbn:de:0114-fqs100387.
Miles MB, Huberman AM : Qualitative Data Analysis. California: SAGE, 1984.
Oliveira C, Mendes Á, Sousa L : Promoção da saúde em famílias com paramiloidose: papéis dos mais velhos junto dos mais novos 2017; Cad Saúde Pública (accepted).
Ashida S, Hadley D, Goergen A, Skapinsky K, Devlin H, Koehly LM : The importance of older family members in providing social resources and promoting cancer screening in families with a hereditary cancer. Gerontologist 2011; 51: 833–842.
Mendes Á : Doenças hereditárias, aconselhamento genético e redes familiares e sociais. Rev Kairos 2012; 15: 199–216.
Gonzalez S, Steinglass P, Reiss D : Putting the illness in its place: discussion groups for families with chronic medical illnesses. Fam Process 1989; 28: 69–87.
Sousa L, Patrão M, Mendes Á : Material inheritances: an affective story in the history of elderly persons. Intern J Ageing Later Life 2015; 9: 35–52.
Yamasaki J, Hovick SR : «That was grown folks’ business»: narrative reflection and response in older adults’ family health history communication. Health Commun 2015; 30: 221–230.
Acknowledgements
The authors are indebted to all the participants in this study, for sharing their time and experience. The authors thank the APP, especially to Sandra Costa, for help in the recruitment of the participants. Álvaro Mendes is the recipient of a postdoctoral grant from FCT (the Portuguese Foundation for Science and Technology; SFRH/BPD/88647/2012). This article was supported by FEDER through the operation POCI-01-0145-FEDER-007746 funded by the Programa Operacional Competitividade e Internacionalização—COMPETE2020 and by National Funds through FCT—Fundação para a Ciência e a Tecnologia within CINTESIS, R&D Unit (reference UID/IC/4255/2013).
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Oliveira, C., Mendes, A. & Sousa, L. From older to younger: intergenerational promotion of health behaviours in Portuguese families affected by familial amyloid polyneuropathy. Eur J Hum Genet 25, 687–693 (2017). https://doi.org/10.1038/ejhg.2017.40
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DOI: https://doi.org/10.1038/ejhg.2017.40
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