Understanding family caregivers' needs to support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal
Autor(a) principal: | |
---|---|
Data de Publicação: | 2020 |
Outros Autores: | , , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
Texto Completo: | http://hdl.handle.net/10773/32329 |
Resumo: | Background: Family caregivers play an important role supporting their relatives with advanced progressive disease to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers’ experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time. Methods: An ethnographic study comprising observations and interviews. A purposive sample of 10 family caregivers and 10 relatives was recruited within a rural area in the north of Portugal. Data were collected between 2014 and 16 using serial participant observations (n = 33) and in-depth interviews (n = 11). Thematic content analysis was used to analyse the data. Results: Five overarching themes were yielded: (1) provision of care towards independence and prevention of complications; (2) perceived and (3) unknown caregiver needs; (4) caregivers’ physical and emotional impairments; and (5) balancing limited time. An imbalance towards any one of these aspects may lead to reduced capability and performance of the family caregiver, with increased risk of complications for their relative. However, with balance, family caregivers embraced their role over time. Conclusions: These findings enhance understanding around the needs of family caregivers, which are optimally met when professionals and family caregivers work together with a collaborative approach over time. Patients and their families should be seen as equal partners. Family-focused care would enhance nursing practice in this context and this research can inform nursing training and educational programs. |
id |
RCAP_397b266d6a2639e0dd2d7763100e33c4 |
---|---|
oai_identifier_str |
oai:ria.ua.pt:10773/32329 |
network_acronym_str |
RCAP |
network_name_str |
Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
repository_id_str |
7160 |
spelling |
Understanding family caregivers' needs to support relatives with advanced progressive disease at home: an ethnographic study in rural PortugalAdvanced diseaseEthnographyFamily caregiverHomeInterviewsNeedsNursingObservationsQualitative researchBackground: Family caregivers play an important role supporting their relatives with advanced progressive disease to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers’ experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time. Methods: An ethnographic study comprising observations and interviews. A purposive sample of 10 family caregivers and 10 relatives was recruited within a rural area in the north of Portugal. Data were collected between 2014 and 16 using serial participant observations (n = 33) and in-depth interviews (n = 11). Thematic content analysis was used to analyse the data. Results: Five overarching themes were yielded: (1) provision of care towards independence and prevention of complications; (2) perceived and (3) unknown caregiver needs; (4) caregivers’ physical and emotional impairments; and (5) balancing limited time. An imbalance towards any one of these aspects may lead to reduced capability and performance of the family caregiver, with increased risk of complications for their relative. However, with balance, family caregivers embraced their role over time. Conclusions: These findings enhance understanding around the needs of family caregivers, which are optimally met when professionals and family caregivers work together with a collaborative approach over time. Patients and their families should be seen as equal partners. Family-focused care would enhance nursing practice in this context and this research can inform nursing training and educational programs.BMC2021-10-08T15:22:13Z2020-05-25T00:00:00Z2020-05-25info:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10773/32329eng10.1186/s12904-020-00583-4Teixeira, Maria João CardosoAbreu, WilsonCosta, NilzaMaddocks, Matthewinfo:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2024-02-22T12:01:57Zoai:ria.ua.pt:10773/32329Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-20T03:03:52.322771Repositório 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 |
Understanding family caregivers' needs to support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal |
title |
Understanding family caregivers' needs to support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal |
spellingShingle |
Understanding family caregivers' needs to support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal Teixeira, Maria João Cardoso Advanced disease Ethnography Family caregiver Home Interviews Needs Nursing Observations Qualitative research |
title_short |
Understanding family caregivers' needs to support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal |
title_full |
Understanding family caregivers' needs to support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal |
title_fullStr |
Understanding family caregivers' needs to support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal |
title_full_unstemmed |
Understanding family caregivers' needs to support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal |
title_sort |
Understanding family caregivers' needs to support relatives with advanced progressive disease at home: an ethnographic study in rural Portugal |
author |
Teixeira, Maria João Cardoso |
author_facet |
Teixeira, Maria João Cardoso Abreu, Wilson Costa, Nilza Maddocks, Matthew |
author_role |
author |
author2 |
Abreu, Wilson Costa, Nilza Maddocks, Matthew |
author2_role |
author author author |
dc.contributor.author.fl_str_mv |
Teixeira, Maria João Cardoso Abreu, Wilson Costa, Nilza Maddocks, Matthew |
dc.subject.por.fl_str_mv |
Advanced disease Ethnography Family caregiver Home Interviews Needs Nursing Observations Qualitative research |
topic |
Advanced disease Ethnography Family caregiver Home Interviews Needs Nursing Observations Qualitative research |
description |
Background: Family caregivers play an important role supporting their relatives with advanced progressive disease to live at home. There is limited research to understand family caregiver needs over time, particularly outside of high-income settings. The aim of this study was to explore family caregivers’ experiences of caring for a relative living with advanced progressive disease at home, and their perceptions of met and unmet care needs over time. Methods: An ethnographic study comprising observations and interviews. A purposive sample of 10 family caregivers and 10 relatives was recruited within a rural area in the north of Portugal. Data were collected between 2014 and 16 using serial participant observations (n = 33) and in-depth interviews (n = 11). Thematic content analysis was used to analyse the data. Results: Five overarching themes were yielded: (1) provision of care towards independence and prevention of complications; (2) perceived and (3) unknown caregiver needs; (4) caregivers’ physical and emotional impairments; and (5) balancing limited time. An imbalance towards any one of these aspects may lead to reduced capability and performance of the family caregiver, with increased risk of complications for their relative. However, with balance, family caregivers embraced their role over time. Conclusions: These findings enhance understanding around the needs of family caregivers, which are optimally met when professionals and family caregivers work together with a collaborative approach over time. Patients and their families should be seen as equal partners. Family-focused care would enhance nursing practice in this context and this research can inform nursing training and educational programs. |
publishDate |
2020 |
dc.date.none.fl_str_mv |
2020-05-25T00:00:00Z 2020-05-25 2021-10-08T15:22:13Z |
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 |
http://hdl.handle.net/10773/32329 |
url |
http://hdl.handle.net/10773/32329 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
10.1186/s12904-020-00583-4 |
dc.rights.driver.fl_str_mv |
info:eu-repo/semantics/openAccess |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
application/pdf |
dc.publisher.none.fl_str_mv |
BMC |
publisher.none.fl_str_mv |
BMC |
dc.source.none.fl_str_mv |
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 |
repository.mail.fl_str_mv |
|
_version_ |
1799137694244143104 |