Sentimentos face ao futuro, necessidades percebidas e redes de suporte social de cuidadores informais de pessoas adultas com deficiência

Sónia Guadalupe; Élia Costa; Fernanda Daniel

doi:10.7342/ismt.rpics.2016.2.1.27

Authors

Sónia Guadalupe Instituto Superior Miguel Torga, Coimbra, Portugal http://orcid.org/0000-0003-4898-3942
Élia Costa Associação de Paralisia Cerebral de Coimbra, Coimbra, Portugal
Fernanda Daniel Instituto Superior Miguel Torga, Coimbra, Portugal http://orcid.org/0000-0002-2202-1123

DOI:

https://doi.org/10.7342/ismt.rpics.2016.2.1.27

Keywords:

Intellectual Disability, Cerebral Palsy, Informal Caregiver, Aging, Social Support, Personal Social Networks, Social Work

Abstract

Aim: The increase in life expectancy of people with disabilities and the aging of their caregivers invite us to reflect on the present and future challenges around the provision of care. This study aims to characterize the feelings towards the future, support needs, and social support networks of informal caregivers of adults with disabilities. Participants: Forty informal caregivers, most parents (67.5%) of adults with cerebral palsy, intellectual disabilities, and multiple disabilities. With an average age of 67.83 (SD = 11.47) years old, 72.5% with 65+, are mostly female (77.5%), married (50%), retired (65%), and the most part is single parents (40%). Methods: We used a survey and the Personal Social Networks Analysis Tool (Guadalupe, 2009), to assess the dimensions of social personal network. Results: Reconciling work and care presents some difficulties (40%), 17.5% stopped working and most part indicates a moderate (32.5%) or high (30%) burden. The uncertainty and sadness are the most common negative feelings towards the future, and the positive is hope. The support they currently need is economical, and the future one is residential care. Structurally, personal social network have an average size of 6 members, mostly relatives (M = 74%) and has a very high density. Functionally, the support perceived as higher is the emotional, and the other kinds of support are moderate, revealing reciprocity and satisfaction with the network. The frequency of contacts between the members is high, with closeness. Conclusions: Emerges from the aging reality in families and caregivers of people with disabilities a set of needs, difficulties, restrictions in supporting and risks of increasing vulnerability that deserve deepening. The mobilization of informal provision requires synchronization with a formal and collective provision that promotes the rights and wellbeing of citizens who care.

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