Feelings towards the future, support needs and social support networks of informal caregivers of adults with disabilities
Autor(a) principal: | |
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Data de Publicação: | 2016 |
Outros Autores: | , |
Tipo de documento: | Artigo |
Idioma: | por eng |
Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
Texto Completo: | https://doi.org/10.7342/ismt.rpics.2016.2.1.27 |
Resumo: | 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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Feelings towards the future, support needs and social support networks of informal caregivers of adults with disabilitiesSentimentos face ao futuro, necessidades percebidas e redes de suporte social de cuidadores informais de pessoas adultas com deficiênciaDeficiência IntelectualParalisia CerebralCuidador InformalEnvelhecimentoSuporte SocialRedes Sociais PessoaisServiço SocialIntellectual DisabilityCerebral PalsyInformal CaregiverAgingSocial SupportPersonal Social NetworksSocial WorkAim: 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.Objetivo: O aumento da esperança de vida das pessoas com deficiência e o envelhecimento dos seus cuidadores informais convocam a refletir sobre os desafios que se perspetivam no presente e futuro em torno da provisão dos cuidados. O objetivo é caracterizar os sentimentos face ao futuro, necessidades de apoio e rede de suporte social de cuidadores informais de adultos com deficiência. Participantes: Participaram 40 cuidadores informais, na sua maioria pais (67,5%) de adultos com paralisia cerebral, deficiência intelectual e multideficiência; média de idades de 67,83 (DP = 11,47), tendo 72,5% 65 anos ou mais; maioritariamente do sexo feminino (77,5%), casados (50%), reformadas/os (65%), e a maior parte integra famílias monoparentais (40%). Métodos: Utilizou-se inquérito por questionário e o Instrumento de Análise da Rede Social Pessoal para avaliar as dimensões das redes. Resultados: A conciliação entre trabalho e cuidar é feita com alguma dificuldade (40%), tendo 17,5% deixado de trabalhar, percebendo um nível de sobrecarga moderado (32,5%) e elevado (30%). A incerteza e tristeza são os sentimentos negativos mais frequentes face ao futuro, sendo o positivo, a esperança. O apoio necessitado mais referido atual é o económico, e no futuro o apoio residencial. Estruturalmente, a rede social pessoal tem um tamanho médio de 6 membros, compõe-se maioritariamente por familiares (M = 74%) e densidade muito elevada. Funcionalmente, o apoio percebido como mais elevado é o emocional, sendo os restantes moderados, revelando reciprocidade e satisfação com a rede. A frequência de contactos entre os membros é elevada e há proximidade geográfica. Conclusões: Emerge da realidade do envelhecimento nas famílias e cuidadores de pessoas com deficiência um conjunto de necessidades, dificuldades, restrições no apoio e riscos de vulnerabilização que merecem aprofundamento. A mobilização da provisão informal exige sincronização com provisão formal e coletiva que favoreça os direitos e bem-estar dos cidadãos que cuidam.Departamento de Investigação & Desenvolvimento do Instituto Superior Miguel Torga2016-02-29info:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdftext/htmltext/plainhttps://doi.org/10.7342/ismt.rpics.2016.2.1.27https://doi.org/10.7342/ismt.rpics.2016.2.1.27Portuguese Journal of Behavioral and Social Research; Vol. 2 No. 1 (2016): Fevereiro; 53–66Revista Portuguesa de Investigação Comportamental e Social; Vol. 2 N.º 1 (2016): Fevereiro; 53–662183-4938reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAPporenghttps://rpics.ismt.pt/index.php/ISMT/article/view/27https://rpics.ismt.pt/index.php/ISMT/article/view/27/pdf_1https://rpics.ismt.pt/index.php/ISMT/article/view/27/htmlhttps://rpics.ismt.pt/index.php/ISMT/article/view/27/593Direitos de Autor (c) 2016 Sónia Guadalupe, Élia Costa, & Fernanda Danielhttp://creativecommons.org/licenses/by-nc/4.0info:eu-repo/semantics/openAccessGuadalupe, SóniaCosta, ÉliaDaniel, Fernanda2024-01-25T22:00:39Zoai:ojs.rpics.ismt.pt:article/27Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T16:39:43.174742Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse |
dc.title.none.fl_str_mv |
Feelings towards the future, support needs and social support networks of informal caregivers of adults with disabilities Sentimentos face ao futuro, necessidades percebidas e redes de suporte social de cuidadores informais de pessoas adultas com deficiência |
title |
Feelings towards the future, support needs and social support networks of informal caregivers of adults with disabilities |
spellingShingle |
Feelings towards the future, support needs and social support networks of informal caregivers of adults with disabilities Guadalupe, Sónia Deficiência Intelectual Paralisia Cerebral Cuidador Informal Envelhecimento Suporte Social Redes Sociais Pessoais Serviço Social Intellectual Disability Cerebral Palsy Informal Caregiver Aging Social Support Personal Social Networks Social Work |
title_short |
Feelings towards the future, support needs and social support networks of informal caregivers of adults with disabilities |
title_full |
Feelings towards the future, support needs and social support networks of informal caregivers of adults with disabilities |
title_fullStr |
Feelings towards the future, support needs and social support networks of informal caregivers of adults with disabilities |
title_full_unstemmed |
Feelings towards the future, support needs and social support networks of informal caregivers of adults with disabilities |
title_sort |
Feelings towards the future, support needs and social support networks of informal caregivers of adults with disabilities |
author |
Guadalupe, Sónia |
author_facet |
Guadalupe, Sónia Costa, Élia Daniel, Fernanda |
author_role |
author |
author2 |
Costa, Élia Daniel, Fernanda |
author2_role |
author author |
dc.contributor.author.fl_str_mv |
Guadalupe, Sónia Costa, Élia Daniel, Fernanda |
dc.subject.por.fl_str_mv |
Deficiência Intelectual Paralisia Cerebral Cuidador Informal Envelhecimento Suporte Social Redes Sociais Pessoais Serviço Social Intellectual Disability Cerebral Palsy Informal Caregiver Aging Social Support Personal Social Networks Social Work |
topic |
Deficiência Intelectual Paralisia Cerebral Cuidador Informal Envelhecimento Suporte Social Redes Sociais Pessoais Serviço Social Intellectual Disability Cerebral Palsy Informal Caregiver Aging Social Support Personal Social Networks Social Work |
description |
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. |
publishDate |
2016 |
dc.date.none.fl_str_mv |
2016-02-29 |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
https://doi.org/10.7342/ismt.rpics.2016.2.1.27 https://doi.org/10.7342/ismt.rpics.2016.2.1.27 |
url |
https://doi.org/10.7342/ismt.rpics.2016.2.1.27 |
dc.language.iso.fl_str_mv |
por eng |
language |
por eng |
dc.relation.none.fl_str_mv |
https://rpics.ismt.pt/index.php/ISMT/article/view/27 https://rpics.ismt.pt/index.php/ISMT/article/view/27/pdf_1 https://rpics.ismt.pt/index.php/ISMT/article/view/27/html https://rpics.ismt.pt/index.php/ISMT/article/view/27/593 |
dc.rights.driver.fl_str_mv |
Direitos de Autor (c) 2016 Sónia Guadalupe, Élia Costa, & Fernanda Daniel http://creativecommons.org/licenses/by-nc/4.0 info:eu-repo/semantics/openAccess |
rights_invalid_str_mv |
Direitos de Autor (c) 2016 Sónia Guadalupe, Élia Costa, & Fernanda Daniel http://creativecommons.org/licenses/by-nc/4.0 |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
application/pdf text/html text/plain |
dc.publisher.none.fl_str_mv |
Departamento de Investigação & Desenvolvimento do Instituto Superior Miguel Torga |
publisher.none.fl_str_mv |
Departamento de Investigação & Desenvolvimento do Instituto Superior Miguel Torga |
dc.source.none.fl_str_mv |
Portuguese Journal of Behavioral and Social Research; Vol. 2 No. 1 (2016): Fevereiro; 53–66 Revista Portuguesa de Investigação Comportamental e Social; Vol. 2 N.º 1 (2016): Fevereiro; 53–66 2183-4938 reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação instacron:RCAAP |
instname_str |
Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
instacron_str |
RCAAP |
institution |
RCAAP |
reponame_str |
Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
collection |
Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
repository.name.fl_str_mv |
Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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1799130860729925632 |