Politico-Epistemic Tensions Regarding Personal Assistance and Care for People with Disabilities: An Integrative Literature Review
Abstract
:1. Introduction
2. Material and Methods
2.1. Problem Identification
2.2. Literature Search
2.3. Data Evaluation
2.4. Data Analysis
2.5. Results (See Table 2)
Database | Journal | Year | Boolean Combination | Authors | Analysis Dimension (Results and Discussion) | Article | Aim | Design | Conclusion |
---|---|---|---|---|---|---|---|---|---|
Dialnet | Social Inclusion | 2018 | Personal assistance AND disability | Dietmar Rauch, Elisabeth Olin and Anna Dunér | 2 | A Refamiliarized System? An Analysis of Recent Developments of Personal Assistance in Sweden | To critically discuss in what direction Swedish disability support in the form of PA has been heading in the past decade when it comes to the balance of support responsibility between the public sector and the family | Theory Discussion | Data from the past decade about approval rates for AA-seekers as well as analyses of changed admission criteria suggest that we might be in the wake of a reversed development. Potential newcomers to the PA-system meet drastically decreased chances to pass the admission tests. Those already covered by PA run a heightened risk to lose their PA when their assistance needs are scrutinized in their next re-assessment. |
Dialnet | Lus fugit: Interdisciplinary Legal-historical Journal | 2019 | Personal assistance AND disability | Rafael de Asís | 1 | Support and Personal Assistance | Exposing the legal construction of support and assistance provided to people in the framework of disability | Theoretical and conceptual reflection | Personal assistance training is needed, both to guarantee satisfying this right for people with disabilities and to protect assistants. |
Dialnet | Spanish Disability Journal | 2019 | Personal assistance AND disability | Juan María Prieto Lobato, Pablo de la Rosa Gimeno, y José Luis Izquieta Etulain. | 1 | Personal assistance and mental disability: a service for social inclusion | Analyze one of the few experiences within the national territory of implanting a service for people with mental disabilities and/or severe mental illness | Qualitative study with interviews and discussion groups | Personal assistance represents a new way to help people with mental disabilities and severe mental illness. This service involves an authentic subversion of the traditional way of understanding and acting on the process of caring for this collective. |
Dialnet | Journal of Political and Sociological Research (RIPS) | 2020 | Personal assistance AND disability | Mercedes López Pérez y Susana Ruiz Seisdedos | 1 | From the Independent Living Movement to personal assistance: the rights of people with functional diversity | Performing a theoretical study on the first social movement led by people with functional diversity themselves | Theoretical reflection | With the birth and rise of the ILM, people with functional diversity became aware of their rights. One of these is the right to live independently and with equal opportunities as other citizens. To facilitate this, personal assistance is indispensable. |
Dialnet | Spanish Disability Journal | 2018 | Personal assistance AND disability | Antonio Iáñez Domínguez, José Aranda Chaves, y Julia García Romero. | 1 | Economic and social impact of personal assistance via Social Return on Investment methodology | Measuring the socioeconomic impact of a Project from the Independent Life Association of Andalusia. | Methodology applying Social Return on Investment | Research has shown the changes generated by the personal assistance Project for each agent of interest. All changes were quantified by SROI methodology, obtaining an approximation of the monetary value created by the personal assistance service. |
Dialnet | TS Global–Social Intervention Studies | 2020 | Personal assistance AND disability | Mercedes López-Pérez y Carmen Álvarez-Nieto. | 3 | Personal Assistance in Spain. Perspectives from its protagonists: beneficiaries, people in charge of personal assistance at providing entities, and personal assistants. | Discovering and analyzing the current situation of this resource in Spain. | Mixed Study: Observational descriptive cross-sectional study and a qualitative study, via a semi-structured interview | There is little information about personal assistance, limited access to this resource, and job precariousness for personal assistance professionals. |
Dialnet | Siglo Cero | 2018 | Personal assistance AND disability | Sandra Ruiz Ambit, Pablo Rodríguez Herrero, y Dolores Ixuxquiza Gasset | 3 | Personal assistants in the promotion of independent living for persons with intellectual disability: a basic and applied investigation | Identifying perceptions on support needs for independent living. | Mixed design. Descriptive cross-sectional quantitative design and case of study design. | This investigation can contribute to the field by opening new lines of research on the figure of the personal assistant, such as their own perception of the assistance process, the validation of training programmes following the competency profile outlined above, or an analysis of personal assistants’ support with multiple disabilities and serious communication difficulties. |
Dialnet | Social Inclusion | 2018 | Personal assistance AND disability | Christoph Tschanz | 3 | Theorising Disability Care (Non-) Personalisation in European Countries: Comparing Personal Assistance Schemes in Switzerland, Germany, Sweden, and the United Kingdom | Examines four European countries regarding their degree of disability care personalization | Theoretical analysis | That conservative-corporatist welfare regimes provide less-supportive opportunity structures for policy change pertaining to personal assistance than other welfare regimes. |
Dialnet | Siglo Cero | 2020 | Asistencia personal AND discapacidad | Alberto Minoletti, Pamela Gutiérrez, M° José Poblete, Bernardita López, Juan Bustos, Carla Muñoz, y Esteban Encina | 1 | Design of a brief personal assistance model for people with intellectual disabilities in Chile | Developing a personal assistance model for, initially, people with light and moderate intellectual disabilities. | Literature review and expert analysis (professionals, users, experience) | The proposed personal assistance model has the strength of being based on both evidence and experiences described in recent literature, along with expert opinions. It also has the advantage of gathering Latin American cultural traditions. One major weakness is the lack of national and international studies on the topic. |
Dialnet | Civil Law Journal | 2020 | Care AND disability | Antonio Pau | 5 | The equality principle and the care principle, with special attention to disability | Comparing the legal and administrative implications of the equality and care principles | Theoretical review | No dividing line can be traced between people who need care and people who do not need care. In the public sphere, applying the care ethic must lead to attentive administrative action which is solicitous to citizens. |
Dialnet | Contextos Journal | 2021 | Care AND disability | Diego Carmona Gallego | 4 | Autonomy in disability from the perspective of care ethics | Reflection on autonomy in the disability field, regarding the possibility of making decisions contemplating the diverse situations that this process can imply. | Theoretical review | Considering the fundamental importance of autonomy, we appeal to the configuration of this concept from a perspective that decouples it from the idea of self-sufficiency. This conceptual innovation arising from the contributions of complex thought and feminist philosophy has been shown to be more effective to describe the concrete experiences wherein decisions by people with and without disabilities take place, along with a lack of affiliation with the current idea centered on a self-sufficient individual. |
PubMed | Sociology of Health & Illness | 2020 | Personal assistance AND disability | Tom Porter, Tom Shakespeare, and Andrea Stöckl | 3 | Performance management: a qualitative study of relational boundaries in personal assistance | To gain a deeper understanding of PA relationships, and to explore how both parties manage interpersonal challenges. | Qualitative design with interviews. | Personal assistance is a unique social relationship, which subverts typical interpersonal boundaries. Disabled employers and PAs often hold divergent views and preferences concerning the status of their relationships. |
PubMed | International Journal of Environmental Research and Public Health | 2022 | Personal assistance AND disability | Ulrika J. Berggren and Ann-Sofie Bergman | 2 | Whether Disabled Parents Receive Personal Assistance for Parenting and the Consequences for Children–An Interview Study | To shed light on the meaning of PA for parents and children in everyday life, especially when PA is reduced or even withdrawn. | Qualitative design with interviews. | Parents’ experiences are that PA allows them to fulfill their parental roles. |
PubMed | BMC Health Services Research | 2019 | Personal assistance AND care AND disability | Kristina M. Kokorelias, Monique A. M. Gignac, Gary Naglie and Jill L. Cameron | 2 | Towards a universal model of family-centered care: a scoping review | To explore existing models of family-centered care to determine the key components of existing models and to identify gaps in the literature. | Scoping review | Healthcare policies and procedures needed that incorporate FCC to create system-level change. Our review moves the field of FCC forward by identifying the universal and illness-specific model components that can inform model development, testing, and implementation. |
PubMed | Ann Ist Super Sanitá | 2020 | Care AND disability | Laura Camoni, Angelo Picardi and Aldina Venerosi | 4 | A new mode of care. Value and limitations of the person-centered care planning for people with mental disability. | Examines and summarize international research and non-research material to survey the different implementation strategies of personalization in different countries, with a special focus on Italy. | Narrative review | Though decentralization is one of the new modes of care, the central government plays an important role in guiding processes and locating investments and infrastructures suitable to guarantee the quality, equity, and equal opportunities to people with long-term and chronic care needs. In Italy, policies addressed to harmonize welfare rules and opportunities, and to promote social investment and a stable monitoring framework, are urgently needed. |
Scopus | Gender Work Organization | 2018 | Personal assistance AND care AND disability | Cecilie Basberg Neumann and Tonje Gundersen | 5 | Care parading as service: negotiating recognition and equality in user-controlled personal assistance | To investigate the experience of having a body that is someone else’s area of work as well as the experience of having another person’s body as work focus. | Qualitative design with interviews. | If we instead place the conceptualization of care in a position based on an ethics of responsibility and cooperation (Mol, 2008), the competent sensitivity performed by the good assistant could be based on an interdependent professional ethos for the PAs, as collaborators. |
Scopus | Work, Employment, and Society–WES | 2022 | Personal assistance AND disability | Jane Maddison, Jennni Brooks, Katherine Graham, and Yvonne Birks | 3 | ‘They exist but they don’t exist’: Personal assistants supporting physically disabled people in the workplace | Explores workplace personal assistance as invisible work. | The data analysed here are from a study (during 2016–2017). The design was qualitative, using semi-structured interviews. | Socioculturally, WPAs are subject to layered invisibility, owing to the dual mechanisms of empowerment and workplace ableism operating on the disabled worker. These mechanisms intersect, rendering the WPA role invisible as a tool to empower disabled people, which is in a disregarded zone of the labor of disabled workers. |
Scopus | ALTER–European Journal of Disability Research | 2019 | Personal assistance AND disability | Elisabeth Olin and Anna Dunér | 2 | Careful assistance? Personal assistance within the family as a hybridization of modern welfare policy and traditional family care. | To examine how different ideological perspectives on Swedish disability policy, are reflected in the experiences of disabled people and their families’ personal assistants. | Qualitative design with interviews. | It became obvious that family assistance could add value to the life situation of both family PAs and assistance users, as in the family as a complementary approach in which both parties were empowered to take control through opportunities of flexible and protected welfare support. |
Scopus | Scandinavian Journal of Disability Research | 2022 | Personal assistance AND disability | Dikmen Bezmez and Tom Porter | 5 | Disabled Women’s Care experiences in Turkey: Intimacy, dependency, independent living | Analyses the experiences of three disabled women with distinctive care arrangements (paid professional, familial informal, and an eclectic mix). | Case of study (3) | Cultural and political economies of care are key to understanding the experience of support relationships and independent living: the stark deficit of support within the Turkish state, and the deeply gendered structuring of care, interrelate in ways that limit choice and control. Rights-based approaches to welfare—involving direct payments, personal assistance, and an overarching philosophy of IL—have international relevance and the potential to counter-cultural and political barriers to independent living. |
Scopus | Disability and Rehabilitation | 2022 | Personal assistance AND disability | Heléne von Granitz, Karin Sonnander, Ieva Reine, and Ilrika Winblad | 1 | Do personal assistance activities promote participation in society for persons with disabilities in Sweden? A five-year longitudinal study | To explore whether the personal assistance (PA) activities provided by the Swedish Act concerning Support and Service for Persons with certain functional impairments. | Longitudinal study | The results show that PA activities are used more for medical care and home-based services over the five-year period. |
Scopus | Disability and Society | 2021 | Personal assistance AND disability | Deirdre Nally, Sean S. Moore, and Rosemary Joan Gowran | 1 | How governments manage personal assistance schemes in response to the United Nations Convention on the Right of Persons with Disabilities (UNCRPD): A Scoping Review | To map and explore current knowledge on how governments internationally have managed PA schemes in response to the UNCRPD. | Scoping review | This paper suggests that we need to have the voice of the PA user to direct the design and delivery of PA schemes. |
Scopus | Caring Culture | 2019 | Personal assistance AND disability | Rubén González-Rodríguez, Carmen Verde-Diego, y Violeta Pérez-Lahoz | 3 | Personal assistance as a new citizen right: a perspective from health professionals’ outlook | Knowing about the figure of the personal assistant for people with disabilities and describing the importance of care and professionalized accompaniment vis-à-vis family care. | A qualitative design with interviews and official database reviews. | The nurses interviewed considered that personal assistance functions should be focused on clear professionalization for its specific characteristics. |
Scopus | International Journal of Care and Caring | 2018 | Personal assistance AND disability | Tom Shakespeare, Andrea Stöckl, and Tom Porter | 3 | Metaphors to work by: the meaning of personal assistance in England | To explore the meaning of personal assistance in England through metaphors. | Qualitative design with interviews. | When personal assistants come from a different culture there may be additional confusion about the different metaphors the employer and worker may be drawing upon. Conflict can emerge from ‘crossing boundaries’, which may be implicit and hidden. |
Scopus | Nordic Social Work Research | 2022 | Personal assistance AND disability | Ann-Sofie Bergman, Ulla Melin Emilsson, and Ulrika J. Berggren | 2 | Persons with certain functional impairments apply for parenting support: a study of personal assistance assessments in Sweden | Explore what kind of support parents who have functional impairments and apply for personal assistance may need when they have underage children. | Based on qualitative and quantitative document analyses. | The general perception in Sweden that the welfare state protects children may contribute to a lack of recognition. There is a risk that children may become young careers in Sweden due to the construction of the welfare system that is individual-based and lacking in a child perspective and family perspective in the distribution of welfare rights. |
Scopus | European Journal of Social Work | 2021 | Personal assistance AND disability | Ulrika J. Berggren, Ulla Melin Emilsson, and Ann-Sofie Bergman | 3 | Strategies of austerity used in needs assessments for personal assistance—changing Swedish social policy for a person with disabilities. | Examines the strategies used by public officials in implementing austerity measures in needs assessment for personal assistance in Sweden. | Based on a document study with N: 100 records of needs assessment for PA for a person with serious functional disabilities. | The social policy values of fifty years, emphasizing the right to equal participation in society, are traded for economic austerity goals. |
WoS | Scandinavian Journal of Disability Research | 2018 | Personal assistance AND care AND disability | Line Jenhaug and Ole Petter Askheim | 2 | Empowering Parents as Co-producers: Personal assistance for families with disabled children | To what extent co-producing PA with the municipality empowers the parents as family managers. | Qualitative design with interviews. | PA makes parents feel more empowered and improves their control and coping. It also gives their children the benefit of both parental care and increasing independence. However, in the decision-making process of granting and following up PA, the parents also experience that they are not regarded as equal co-producers by the municipal services. |
WoS | Disability and Society | 2020 | Personal assistance AND disability | Teodor Mladenov | 5 | What is good personal assistance made of? Results of a European survey | Looks at the results of a survey on personal assistance for disabled people in Europe. | The survey presented in this article was constructed by elaborating a series of statements describing various typical characteristics of PA based on a literature review that included academic papers and civil society reports. | The greatest enabler of choice and control in a PA scheme is the opportunity to choose one’s personal assistant. As far as the greatest barriers are concerned, they include restrictions over the ‘who’, the ‘where’, the ‘what’, and the ‘when’ of PA. Of particular concern are cuts and/or funding restrictions imposed on PA. |
WoS | Social & Cultural Geography | 2022 | Care AND disability | Carey-Ann Morrison | 4 | A personal geography of care and disability | This research focuses on the bodies, feelings, spaces, and places of care and disability. | Autobiography | This article concludes that any attempt to understand the care needs to consider the everyday realities of caregivers and the paradoxical embodied and emotional spaces they occupy. |
WoS | Disability & Society | 2022 | Care AND disability | Shixin Huang | 4 y 5 | Activating disability care: the formation of collective disability care networks in China’s COVID-19 outbreak | Examines the evolution and development of two collective care networks formed by and for people with disabilities and their family members during the COVID-19 outbreak in China. | Qualitative content analysis. | Care (and guardianship) in this context refers not merely to a political identity (although increasingly so with a new generation of disability rights activists), but basic needs of everyday survival. Public ethics of care in this context thus also implied a reconstitution of disability politics towards a fairer social distribution of care responsibility and the recognition of people with disabilities as active citizens and political agents. |
WoS | International Journal of Care and Caring | 2020 | Care AND disability | Poland Lai | 5 | Care, rights, and disability | Makes a cautious case against unequivocal acceptance of the rights paradigm for carers. | Theorist analysis | In a caring relationship, the interests and identities of all parties are intermingled, and it is impossible to consider the welfare or rights of any one party in isolation. Examples in the long-term care sector (nursing homes) in Ontario, Canada, will be used to illustrate situations where the use of rights can be respectful for all parties in a caring relationship. |
Scielo | Feminist Studies Journal | 2022 | Care AND disability | Marivete Gesser, Ilze Zirbel, and Karla García Luiz | 5 | Cuidado na dependência complexa de pessoas com deficiência: uma questão de justiça | Problematizar o cuidado de pessoas com deficiência que experienciam a dependência complexa e defendê-lo como uma questão de justiça. | Revisão teórica | Nossas análises foram pautadas no diálogo entre os estudos da deficiência e uma ética político- feminista do cuidado. Elas indicaram que não é possível garantir os direitos das pessoas com deficiência que experienciam a dependência complexa sem romper com o capacitismo e as políticas familistas, reiteradas por governos neoliberais. |
3. Results and Discussion
3.1. Personal Assistance Dimension: A Tool for People with Disabilities to Achieve Autonomy
3.2. Dimension: The Familiarization of Care Versus Personal Assistance of People with Disabilities
3.3. Dimension: Contractual Vulnerability of Personal Care and Assistance Practices
3.4. Ethical Dimension of Care towards People with Disabilities
3.5. Dimension: Tension between the Independent Living Movement and the Feminist Movement on Personal Assistance and Care
4. Limitations of the Study
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Databases | “Personal Assistance AND Disability” | “Personal Assistance AND Care AND Disability” | “Care AND Disability” | “Asistencia Personal AND Discapacidad” | “Asistencia Personal AND Cuidados AND Discapacidad” | “Cuidados AND Discapacidad” |
---|---|---|---|---|---|---|
Scielo | 12 | 0 | 120 | 2 | 2 | 85 |
Dialnet | 41 | 19 | 1135 | 94 | 39 | 568 |
PubMed | 3923 | 680 | 95,951 | 0 | 0 | 0 |
Scopus | 977 | 572 | 109,166 | 0 | 0 | 11 |
Web of Science | 618 | 314 | 57,605 | 0 | 0 | 0 |
Total | 271,934 |
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© 2023 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
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Pino-Morán, J.A.; Rodríguez-Garrido, P.; Burrone, M.S. Politico-Epistemic Tensions Regarding Personal Assistance and Care for People with Disabilities: An Integrative Literature Review. Int. J. Environ. Res. Public Health 2023, 20, 1366. https://doi.org/10.3390/ijerph20021366
Pino-Morán JA, Rodríguez-Garrido P, Burrone MS. Politico-Epistemic Tensions Regarding Personal Assistance and Care for People with Disabilities: An Integrative Literature Review. International Journal of Environmental Research and Public Health. 2023; 20(2):1366. https://doi.org/10.3390/ijerph20021366
Chicago/Turabian StylePino-Morán, Juan Andrés, Pía Rodríguez-Garrido, and María Soledad Burrone. 2023. "Politico-Epistemic Tensions Regarding Personal Assistance and Care for People with Disabilities: An Integrative Literature Review" International Journal of Environmental Research and Public Health 20, no. 2: 1366. https://doi.org/10.3390/ijerph20021366