scholarly journals Understanding Family Caregivers’ Needs to Support Relatives with Advanced Progressive  Disease at Home: An Ethnographic Study in Rural Portugal

2020 ◽  
Author(s):  
Maria Joao Cardoso Teixeira ◽  
Wilson Abreu ◽  
Nilza Costa ◽  
Matthew Maddocks
Keyword(s):  
Family Caregivers ◽  
Family Caregiver ◽  
Progressive Disease ◽  
Ethnographic Study ◽  
Care Needs ◽  
The North ◽  
Increased Risk ◽  
Caregiver Needs ◽  
Over Time ◽  
At Home

Abstract 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 2014-16 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.

scholarly journals Understanding Family Caregivers’ Needs to Support Relatives with Advanced Disease at Home: An Ethnographic Study in Rural Portugal

2019 ◽  
Author(s):  
Maria Joao Cardoso Teixeira ◽  
Wilson Abreu ◽  
Nilza Costa ◽  
Matthew Maddocks
Keyword(s):  
Family Caregivers ◽  
Family Caregiver ◽  
Progressive Disease ◽  
Ethnographic Study ◽  
Care Needs ◽  
The North ◽  
Increased Risk ◽  
Caregiver Needs ◽  
Over Time ◽  
At Home

Abstract 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 2014-16 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 Our 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.

scholarly journals Understanding Family Caregivers’ Needs to Support Relatives with Advanced Disease at Home: An Ethnographic Study in Rural Portugal

2019 ◽  
Author(s):  
Maria Joao Cardoso Teixeira ◽  
Wilson Abreu ◽  
Nilza Costa ◽  
Matthew Maddocks
Keyword(s):  
Family Caregivers ◽  
Family Caregiver ◽  
Progressive Disease ◽  
Ethnographic Study ◽  
Care Needs ◽  
The North ◽  
Increased Risk ◽  
Caregiver Needs ◽  
Over Time ◽  
At Home

Abstract 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 2014-16 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.

scholarly journals Understanding Family Caregivers’ Needs to Support Relatives with Advanced Progressive  Disease at Home: An Ethnographic Study in Rural Portugal

2020 ◽  
Author(s):  
Maria Joao Cardoso Teixeira ◽  
Wilson Abreu ◽  
Nilza Costa ◽  
Matthew Maddocks
Keyword(s):  
Family Caregivers ◽  
Family Caregiver ◽  
Progressive Disease ◽  
Ethnographic Study ◽  
Care Needs ◽  
The North ◽  
Increased Risk ◽  
Caregiver Needs ◽  
Over Time ◽  
At Home

Abstract 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 2014-16 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.

scholarly journals Understanding Family Caregivers’ Needs to Support Relatives with Advanced Progressive  Disease at Home: An Ethnographic Study in Rural Portugal

2020 ◽  
Author(s):  
Maria Joao Cardoso Teixeira ◽  
Wilson Abreu ◽  
Nilza Costa ◽  
Matthew Maddocks
Keyword(s):  
Family Caregivers ◽  
Family Caregiver ◽  
Progressive Disease ◽  
Ethnographic Study ◽  
Care Needs ◽  
The North ◽  
Increased Risk ◽  
Caregiver Needs ◽  
Over Time ◽  
At Home

Abstract 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 2014-16 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.

scholarly journals Involuntary Treatment in Dementia Care at Home: Results From the Netherlands and Belgium

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 664-665
Author(s):  
Vincent Moermans ◽  
Angela Mengelers ◽  
Michel Bleijlevens ◽  
Hilde Verbeek ◽  
Frans Tan ◽  
...  
Keyword(s):  
The Netherlands ◽  
Home Care ◽  
Secondary Data ◽  
Involuntary Treatment ◽  
Care Needs ◽  
Cross Sectional ◽  
Term Care ◽  
Systems Research ◽  
Increased Risk ◽  
At Home

Abstract Most PwD remain living at home. Due to complex care needs this can result in an increased risk for care provided against the wishes of the client and/or to which the client resists, referred to as involuntary treatment. This study explores the use and factors associated with involuntary treatment in PwD receiving home care in the Netherlands and Belgium. A secondary data analysis of two cross-sectional surveys (n=844 persons) showed that more than half of the PwD (51%) living at home received involuntary treatment (Belgium 68% and the Netherlands 45%). Non-consensual care (83%) was the most common, followed by psychotropic medication (41%) and physical restraints (18%). Involuntary treatment was associated with living alone, greater ADL dependency, lower cognitive ability, higher family caregiver burden and receiving home care in Belgium versus the Netherlands. In order to provide person-centered care, it is important to study ways to prevent involuntary treatment in PwD. Part of a symposium sponsored by Systems Research in Long-Term Care Interest Group.

scholarly journals Profiles of family caregivers of patients at the end of life at home: a Q-methodological study into family caregiver’ support needs

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Femmy M. Bijnsdorp ◽  
H. Roeline W. Pasman ◽  
Cécile R. L. Boot ◽  
Susanne M. van Hooft ◽  
AnneLoes van Staa ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Support Needs ◽  
Methodological Study ◽  
Caregiver Support ◽  
At Home

scholarly journals Use of Homecare Nursing and Sense of Security Among Family Caregivers of Older Adults

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 154-154
Author(s):  
Ayumi Igarashi ◽  
Madoka Katayama ◽  
Mariko Sakka ◽  
Maiko Noguchi-Watanabe ◽  
Chie Fukui ◽  
...  
Keyword(s):  
Older Adults ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Living Arrangements ◽  
Community Care ◽  
Medical Attention ◽  
Sense Of Security ◽  
The Family ◽  
The Mean ◽  
At Home

Abstract Having a sense of security for living at home is essential to continue living at home and it is important to develop a community care system that enables high sense of security. Because frail to dependent older adults often accompany various conditions that require medical attention, receiving homecare nursing might allow the family caregiver to feel safe in living at home. Therefore we examined whether receiving homecare nursing service contributes to a higher family caregiver sense of security. We conducted a questionnaire survey regarding older adults who were 75 years and older with at least some sort of community care services, and their family caregivers (n=776). Family sense of security was measured using 5 items (e.g., “I feel secure about my relative living at home with help of available services”), rated on 5-point Likert scales. Characteristics of older adults were obtained from their nurses or care managers. The mean age of the older adults was 85.8 years, 58% female, and 8 % living alone. The mean total family sense of security was 20.6 (standard deviation = 3.7) out of 25. In multiple regression analysis, the family sense of security was positively associated with the use of homecare nursing (β= 0.09, p=0.020), adjusting for participants’ age, stability of their medical conditions, level of activities of daily living, use of medical procedures, living arrangements, and house call physician services. Homecare provided by nurses could contribute to longer staying at home among older adults by way of the higher family sense of security.

scholarly journals Burdens of Family Caregiving at the End of Life

2013 ◽  
Vol 36 (3) ◽  
pp. 121 ◽  
Author(s):  
Kelli I Stajduhar
Keyword(s):  
Family Caregivers ◽  
Family Caregiving ◽  
Palliative Home Care ◽  
Effective Interventions ◽  
Support Tools ◽  
Caregiver Needs ◽  
Care At Home ◽  
Financial Burdens ◽  
Support Family ◽  
At Home

A patient’s ability to be cared for and to die at home is heavily dependent upon the efforts of family caregivers. Considerable stresses are associated with such caregiving, including physical, psychosocial and financial burdens. Research has shown that unmet needs and dissatisfaction with care can lead to negative outcomes for caregivers. While many family caregivers also report caregiving as life-enriching, some report that they would prefer alternatives to care at home, primarily because of these associated burdens. Little is known about which interventions are most effective to support family caregivers ministering palliative care at home. Well-designed studies to test promising interventions are needed, followed by studies of the best ways to implement the most effective interventions. Clinically effective practice support tools in palliative home care are warranted to identify family caregiver needs and to ensure that patients and their family caregivers have a choice about where care is provided.

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