Journal of Adult Protection, 21(6), 2019, pp.276-284.
Publisher:
Emerald
Purpose: In care homes concerns about abuse have established a culture where all information pertaining to a person must be shared, and little attention is paid to privacy in its broader sense. The purpose of this paper is to take a human rights perspective and consider how information governance may impact on the health, well-being and quality of life of residents. It proposes a proactive approach and presents a template for a privacy impact assessment which services could use to improve their approach to privacy, protecting the human rights of those in their care, contributing to their independence and improving outcomes. Design/methodology/approach: A review of historical and current thinking about the value of privacy in human services and wider society leads to a series of challenges to the way in which privacy is upheld in residential care services. Findings: Recent preoccupations with data privacy have led to a myopic neglect of broader considerations of privacy. Whilst it continues to be important to protect the confidentiality of personal data and to ensure that residents are protected from abuse, human services that provide 24 hour care in congregated settings must not neglect broader components of privacy. Research limitations/implications: Privacy impact assessments have been widely used to check whether data privacy is being upheld. The broader concept that might be termed “Big Privacy” is introduced within which data privacy is but one section. It is suggested that big privacy is severely compromised in residential care settings, thus denying residents their human right to privacy. The extent of such violation of rights should be investigated. Practical implications: Having set out the potential reach of the human right to privacy, important work needs to be done to find out how privacy might be upheld in the real world of congregate residential care. Some service providers may have solutions to the organisational challenges, have addressed staff training needs and revised risk assessment strategies so that privacy is upheld alongside other rights. Social implications: Nearly half a million people live in congregate residential care settings in England, and deprivation of privacy is argued to be a significant deprivation of human rights. Occasional tragedies and scandals in congregate settings create pressure for increasing the level of surveillance, and the right to privacy is sacrificed. This paper offers a challenge to this process, arguing that competing rights need to be balanced and privacy is an essential component of a decent quality of life. Originality/value: Personal growth and development depends to some extent on choice and control over access to privacy. Recent changes in the law regarding data protection have narrowed thinking about privacy until it is a small concept, largely concerned with data handling. This paper invites consideration of big privacy, and invites congregate residential care settings to consider how a deep and broad definition of privacy could transform these services.
(Edited publisher abstract)
Purpose: In care homes concerns about abuse have established a culture where all information pertaining to a person must be shared, and little attention is paid to privacy in its broader sense. The purpose of this paper is to take a human rights perspective and consider how information governance may impact on the health, well-being and quality of life of residents. It proposes a proactive approach and presents a template for a privacy impact assessment which services could use to improve their approach to privacy, protecting the human rights of those in their care, contributing to their independence and improving outcomes. Design/methodology/approach: A review of historical and current thinking about the value of privacy in human services and wider society leads to a series of challenges to the way in which privacy is upheld in residential care services. Findings: Recent preoccupations with data privacy have led to a myopic neglect of broader considerations of privacy. Whilst it continues to be important to protect the confidentiality of personal data and to ensure that residents are protected from abuse, human services that provide 24 hour care in congregated settings must not neglect broader components of privacy. Research limitations/implications: Privacy impact assessments have been widely used to check whether data privacy is being upheld. The broader concept that might be termed “Big Privacy” is introduced within which data privacy is but one section. It is suggested that big privacy is severely compromised in residential care settings, thus denying residents their human right to privacy. The extent of such violation of rights should be investigated. Practical implications: Having set out the potential reach of the human right to privacy, important work needs to be done to find out how privacy might be upheld in the real world of congregate residential care. Some service providers may have solutions to the organisational challenges, have addressed staff training needs and revised risk assessment strategies so that privacy is upheld alongside other rights. Social implications: Nearly half a million people live in congregate residential care settings in England, and deprivation of privacy is argued to be a significant deprivation of human rights. Occasional tragedies and scandals in congregate settings create pressure for increasing the level of surveillance, and the right to privacy is sacrificed. This paper offers a challenge to this process, arguing that competing rights need to be balanced and privacy is an essential component of a decent quality of life. Originality/value: Personal growth and development depends to some extent on choice and control over access to privacy. Recent changes in the law regarding data protection have narrowed thinking about privacy until it is a small concept, largely concerned with data handling. This paper invites consideration of big privacy, and invites congregate residential care settings to consider how a deep and broad definition of privacy could transform these services.
(Edited publisher abstract)
Subject terms:
privacy, literature reviews, data protection, care providers, confidentiality, residential care, human rights;
Journal of Dementia Care, 19(5), September 2011, p.12.
Publisher:
Hawker
St Cecilia’s, a privately run residential home, in Scarborough, England, provides support for 21 people with dementia. Staff conduct routine checks though the night to ensure guests are both safe and comfortable. However, the checking process can be time consuming for staff, and intrusive for residents. This study aimed to establish whether telecare equipment would prove to be beneficial in the care and management of residents, through the installation of telecare sensors such as enuresis, bed occupancy and door exits. The study was conducted from June 2009 to August 2010, in order to gain insight on the long term benefits of the technology. Findings indicated that all residents benefitted from the use of telecare. Staff noted that the sensors enabled them to respond directly to possible risk, and productivity increased as staff were able to continue with other tasks in the knowledge that the residents were safe.
St Cecilia’s, a privately run residential home, in Scarborough, England, provides support for 21 people with dementia. Staff conduct routine checks though the night to ensure guests are both safe and comfortable. However, the checking process can be time consuming for staff, and intrusive for residents. This study aimed to establish whether telecare equipment would prove to be beneficial in the care and management of residents, through the installation of telecare sensors such as enuresis, bed occupancy and door exits. The study was conducted from June 2009 to August 2010, in order to gain insight on the long term benefits of the technology. Findings indicated that all residents benefitted from the use of telecare. Staff noted that the sensors enabled them to respond directly to possible risk, and productivity increased as staff were able to continue with other tasks in the knowledge that the residents were safe.
Subject terms:
older people, privacy, residential care, risk management, telecare, assistive technology;
Ageing and Society, 31(6), August 2011, pp.934-952.
Publisher:
Cambridge University Press
... living facilities. It also describes the assisted living facility studied, which catered for 13 residents. Information for the qualitative study was collected through observations and personal interviews with staff and residents, over 15 months of fieldwork with 1-2 visits a week. The article reports the results of the analysis, covering routines and privacy,privacy in residents' rooms, public dimensions of residents' rooms, control of access to residents' rooms, and privacy in the public spaces. The study found that during the course of a day residents' privacy was qualified and structured by caring activities that took place in various spaces, that individualised care practices improved privacy for the resident, that residents had more control of access to their private rooms than control of their personal space in public areas, and that although constrained by architectural features, staff used a number of spatial strategies to promote the residents' privacy, for example at mealtimes or when care was provided in residents' private rooms. The author concludes that residential care can contribute to a resident's privacy where staff cultivate a resident's right to personal space through
A case study project examined the relationship between the architectural design of an assisted living facility in Sweden and the care provided by the staff to the residents. This article explains the context of assisted living in Sweden, where most assisted living residents are of advanced age and suffer from multiple conditions and/or dementia, and the general elements of design of assisted living facilities. It also describes the assisted living facility studied, which catered for 13 residents. Information for the qualitative study was collected through observations and personal interviews with staff and residents, over 15 months of fieldwork with 1-2 visits a week. The article reports the results of the analysis, covering routines and privacy, privacy in residents' rooms, public dimensions of residents' rooms, control of access to residents' rooms, and privacy in the public spaces. The study found that during the course of a day residents' privacy was qualified and structured by caring activities that took place in various spaces, that individualised care practices improved privacy for the resident, that residents had more control of access to their private rooms than control of their personal space in public areas, and that although constrained by architectural features, staff used a number of spatial strategies to promote the residents' privacy, for example at mealtimes or when care was provided in residents' private rooms. The author concludes that residential care can contribute to a resident's privacy where staff cultivate a resident's right to personal space through individualised care, negotiations of acceptability, and spatial strategies.
Subject terms:
older people, privacy, residential care, rights, supported living, building design;
GREEN Caroline Emmer De Albuquerque, TINKER Anthea, MANTHORPE Jill
Journal article citation:
Working with Older People, 22(4), 2018, pp.198-210.
Publisher:
Emerald
Purpose: The purpose of this paper is to review and discuss evidence of good practice in respecting care home residents’ right to privacy. The right to privacy is a fundamental human right as enshrined in international and domestic law and standards. In the context of increasing interest in using a human rights approach to social care in care homes for older people, this literature review summarises research evidence on what respecting the human right to privacy of care home residents entails in practice. Design/methodology/approach: This literature review followed a rigorous systematic approach to the scoping review, inspired by the Joanna Biggs Institute’s guidelines for conducting systematic reviews. A total of 12 articles were included in the review. Findings: The research took a multidimensional understanding of privacy in their studies. The dimensions can be categorised as physical, inter-relational or related to personal data. The review highlights three good practice points. First, it is good privacy practice in care homes to make available single-occupancy bedrooms to residents since this offers the opportunity to personalising this physical space with furniture and web belongings, privacy considerations were relevant to communal living areas within care homes, including the use of surveillance cameras and the sharing of personal data. Originality/value: This literature review adds to the body of academic literature on human rights and social care in practice. It also highlights areas for future research relating to the right to privacy in care homes.
(Publisher abstract)
Purpose: The purpose of this paper is to review and discuss evidence of good practice in respecting care home residents’ right to privacy. The right to privacy is a fundamental human right as enshrined in international and domestic law and standards. In the context of increasing interest in using a human rights approach to social care in care homes for older people, this literature review summarises research evidence on what respecting the human right to privacy of care home residents entails in practice. Design/methodology/approach: This literature review followed a rigorous systematic approach to the scoping review, inspired by the Joanna Biggs Institute’s guidelines for conducting systematic reviews. A total of 12 articles were included in the review. Findings: The research took a multidimensional understanding of privacy in their studies. The dimensions can be categorised as physical, inter-relational or related to personal data. The review highlights three good practice points. First, it is good privacy practice in care homes to make available single-occupancy bedrooms to residents since this offers the opportunity to personalising this physical space with furniture and web belongings, adding a sense of ownership over the space. Second, residents appreciate being able to choose when and how they spend their time in their own bedrooms. Third, it is good practice to respect residents’ private physical space and private choices, for example by knocking on doors before entering or agreeing with the resident when it is permissible to enter. The review also found that in some studies privacy considerations were relevant to communal living areas within care homes, including the use of surveillance cameras and the sharing of personal data. Originality/value: This literature review adds to the body of academic literature on human rights and social care in practice. It also highlights areas for future research relating to the right to privacy in care homes.
(Publisher abstract)
Subject terms:
good practice, care homes, older people, literature reviews, rights, privacy, residential care, human rights;
... to relaxation and sleep; in lounge, being excluded from the group can be a source of negative feelings. Lack of well-being in the bathroom is related to feelings of incapacity and to violations of privacy. Practical implications of findings are discussed with regard to the role of health care assistants, nurses and activities co-ordinators in the promotion of residents’ well-being.
(Edited publisher abstract)
The aim of the present paper is to analyse the well-being of elderly people in institutions, particularly in relation to the use of space in the Nursing Home (NH). Little research has been done on how older people experience the environment of the NH. Semi-structured interviews were conducted with 18 Nursing Home residents between the ages of 67 and 90. The findings indicate that the informants’ expressions of well-being belong to two main categories: “Well-being in public and private spaces” “Lack of Well-being in public and private spaces”. Two comprehensive themes were identified as relevant to a better understanding of the residents’ expressions of well-being: Emotional states, Own/Others’ behaviours and activities. From results emerged that in residents’ room, peacefulness is fundamental to relaxation and sleep; in lounge, being excluded from the group can be a source of negative feelings. Lack of well-being in the bathroom is related to feelings of incapacity and to violations of privacy. Practical implications of findings are discussed with regard to the role of health care assistants, nurses and activities co-ordinators in the promotion of residents’ well-being.
(Edited publisher abstract)
Subject terms:
wellbeing, older people, nursing homes, residential care, service users, user views, privacy, relationships;
... privacy, confidentiality and dignity. It explains the context of the Department of Health’s Dignity Challenge, defining dignity and providing the criteria for best practice. It contains everything required to offer training to individuals or groups, in modular or whole sessions.
This training programme and resource provides materials to use in ensuring that staff are trained to provide more dignified and respectful services to older and vulnerable people. It applies equally to services provided in the residential sector and in the home care sector. It explains how to train staff to be aware at all times for the need to provide high quality services that respect people’s privacy, confidentiality and dignity. It explains the context of the Department of Health’s Dignity Challenge, defining dignity and providing the criteria for best practice. It contains everything required to offer training to individuals or groups, in modular or whole sessions.
Subject terms:
home care, older people, privacy, residential care, social care staff, confidentiality, dignity, disabilities, empowerment;
This book is a practical guide for people working in care homes for older people. It sets out to provide help to staff facing daily dilemmas in the way they respond to residents' thoughts, feelings and actions relating to love, sex and intimacy.
This book is a practical guide for people working in care homes for older people. It sets out to provide help to staff facing daily dilemmas in the way they respond to residents' thoughts, feelings and actions relating to love, sex and intimacy.
Subject terms:
interpersonal relationships, older people, privacy, residential care, sexuality, staff, access to services, care homes, confidentiality;
Looks at the relationships between environment and behaviour, and emphasises that a positive environment enshrining basic rights of personal integrity, dignity, privacy and freedom to choose enhances the quality of life for older people in residential care.
Looks at the relationships between environment and behaviour, and emphasises that a positive environment enshrining basic rights of personal integrity, dignity, privacy and freedom to choose enhances the quality of life for older people in residential care.
Subject terms:
older people, privacy, quality of life, residential care, residents, rights, user participation, care homes, decision making;