Landscapes of Care: An international study of informal care and care support.
Lead Research Organisation:
Lancaster University
Department Name: Division of Health Research
Abstract
Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.
Publications
Power A
(2009)
'It's the system working for the system': carers' experiences of learning disability services in Ireland.
in Health & social care in the community
Power A
(2008)
Caring for independent lives: geographies of caring for young adults with intellectual disabilities.
in Social science & medicine (1982)
POWER A
(2009)
Spatial Perspectives on Voluntarism in Learning Disability Services in Ireland
in Journal of Social Policy
Power Andrew
(2010)
Landscapes of Care: Comparative Perspectives on Family Caregiving
Power, A.
(2009)
Learning and Memory Developments and Intellectual Disabilities
Power, A.
(2010)
Disabling Geographies
| Description | This postdoctoral fellowship grant was focused on the geographies of 'informal' family caring. Using a geographical approach the research revealed the complex social and spatial experiences of carers, in the home and in public space. It also revealed their experiences of distinct 'carer spaces', including respite centres, local health centres and carer groups. One of the first key findings was that carers of young adults with learning disabilities often felt caught in the middle with the tension between promoting independence of their care recipient on the one hand and worrying about being over-protective on the other hand. Carers had thus developed coping strategies to deal with local people's experiences of disabilities, to mediate in difficult social situations with their adult disabled sons or daughters. A second key finding was that carers often felt frustrated by non-supportive interactions from services that were designed to support carers. These interactions stemmed from services being too provider-led rather than user-led and being inflexible and too risk adverse. For example, many found that respite centres only catered for clients with very mild disabilities and no challenging behaviour or extra medical conditions. A third contribution from the project was an appraisal of the ad hoc and fragmented nature of the voluntary sector within social care due to its particular local contexts and the scale at which it takes place across a country. And yet, it is this sector that the government is increasingly turning to, in order to fill gaps in welfare services. More generally, at the international scale, the work compared welfare services across the UK, the US and Ireland. The comparative focus enabled me to identify the much broader historical, social/cultural and political regimes of care in each jurisdiction, and how caregivers are perceived, recognised and supported differently in each context. |
| Exploitation Route | The findings were taken forward through the publication of three papers in relevant policy-oriented and social care journals as well as the publication of a monograph and co-written book chapter. Finally, an Informal Care conference was organised at the end of the project. The first finding identified above - about carers' complex balancing of promoting independence and being over-protective - was published in the top-ranking international journal, Social Science and Medicine. The paper continues to be well-cited by others working in healthcare, disability and geography research, as the findings offer an important counter-argument to the negative portrayal of carers as enforcing dependency of disabled people. The second key finding - about nonsupportive interactions- was published in a paper 'It's the the system working for the system' for Health and Social care in the Community. The journal is aimed at those working in and those researching the social care sector. The findings in the paper have contributed to debates over the current experiences of frustration with inflexible support providers which has led to calls for more person-centred services. The third contribution from the project - on the uneven geographies of the voluntary sector in social care - was a paper for the policy-oriented international journal, Journal of Social Policy. This was centrally aimed at being of use to a social policy audience and focused on the importance of recognising the uneven and at times precarious nature of voluntarism particularly in the context of care services. The paper draws on an Irish case-study, as this is a jurisdiction where the state advocated a 'hands-off' approach in learning disability services from the outset and promoted the voluntary sector as the primary source of support provision. The final, more broad scale work from the project on the international comparisons of care policy was published in a monograph for Ashgate, Landscapes of Care. This text has filled a gap within the literature, as most work in this field is conducted at very local scales in relation to particular interventions. During the fellowship, I also co-wrote a chapter with Prof. Christine Milligan on the Geographies of Care for a health geography textbook. This is a student-oriented text and thus has served to disseminate our work on care to a wider audience through the teaching of geographies of health at university level. In addition to the written outputs from the project, I also organised a conference, Debates in Informal Care, which brought together both academics and national and local carer groups including the national carer organisation, Carers UK. The event stimulated debate over contemporary issues affecting carers. I also established a critical online carer forum, launched at this event which is still active today. |
| Sectors | Communities and Social Services/Policy,Healthcare,Government, Democracy and Justice |
| Description | My findings from the geographies of family care fellowship have helped inform research within a range of disciplines, including disability studies, sociology, health research as well as inform wider debates concerning the 'place' of informal carers within the wider social care field. Informal caregiving was a previously undeveloped field both within geography and more generally within the social sciences. Indeed, it was a field in which disability studies actively resisted a focus on carers as it feared that care research would undermine work focusing on the primary rights of the disabled person. As a consequence, many disability organisations were reluctant to engage in debates over better care services. In particular, my work has helped dispel much concern about the motives of carers and gives an account of how carers actively seek to promote the independence of their disabled sons or daughters and identifies support interventions which can help carers better achieve this goal. This central plank from the research framed the focus of my 'Debates in Informal Care' conference and subsequent book, Landscapes of Care, which was given to the CEO of Carers UK who also attended and spoke at the conference. I have since continued to develop my research career in a way that has continually sought to build on the work conducted during my fellowship as well as widen the scope of this work within the current context of personalisation and extend my links to policy stakeholders. |
| First Year Of Impact | 2007 |
| Sector | Communities and Social Services/Policy,Healthcare,Government, Democracy and Justice |
| Impact Types | Societal,Policy & public services |
| Description | Debates in Informal Caregiving Workshop |
| Amount | £1,000 (GBP) |
| Organisation | Foundation for the Sociology of Health and Illness |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 11/2007 |
| End | 12/2007 |
| Description | Care Seminar |
| Form Of Engagement Activity | Scientific meeting (conference/symposium etc.) |
| Part Of Official Scheme? | No |
| Type Of Presentation | paper presentation |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | I organised a day-long conference, 'Debates in Informal Care' related to my ESRC post-doctoral funding. It had a wide audience including national and local carer groups, including Carers UK, as well as those involved in care research and policy-evaluation, including Prof. Caroline Glendinning. I chaired the days' activities and developed questions for break-out groups to debate, relating to my research from the fellowship. The seminar helped position me amongst national carer stakeholders and senior colleagues in my field of care research. Feedback at the event showed evidence of changes in views and opinions of delegates, particularly around their understanding of the complex geographies of care, and the need for more sensitively designed and flexible services. |
| Year(s) Of Engagement Activity | 2007 |
| URL | http://www.lancaster.ac.uk/fass/doc_library/ihr/informal_caregiving_details_nov07.doc |
| Description | Geographical Society of Ireland |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | This was an invited seminar, at the Geography Department Seminar Series, NUI Galway, Ireland. I presented a paper from my fellowship research, 'The Third Pillar: Placing Context into the Irish Voluntary Sector'. This sparked many questions afterwards, as the audience was particularly interested in the international comparative element to my work and in the historical, cultural aspects of my research. After my talk, I received very positive feedback from the audience which included the human geography lecturing staff and post-graduate researchers within the department. It helped forge links with academic colleagues that I have continued to build on today. |
| Year(s) Of Engagement Activity | 2008 |
| Description | Health Geographies of Voluntarism, IMGS |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Participants in your research and patient groups |
| Results and Impact | This was a co-organised conference (two-part) session, with Dr Mark Skinner, Trent University, Canada, entitled 'Health Geographies of Voluntarism', at the International Medical Geography Symposium, Bonn, Germany. As well as convening the session I also presented a paper, "They'll Surprise You": Experiences of Family Carers of Young Adults with Intellectual Disabilities', on the uneven nature of voluntarism within social care (subsequently published in Health and Social Care in the Community). It attracted a large international audience of health geography researchers, and helped stimulate thinking around comparative examples of voluntarism and how voluntary organisations can 'jump scale' from local to national and vice versa. The questions sparked afterwards helped sharpen the comparative focus of my paper, which in turn helped others appreciate the complex geographies of voluntary care provision and the need to be attuned to the diverse networks and funding streams linked to voluntary organisations. |
| Year(s) Of Engagement Activity | 2009 |
| URL | http://public.beuth-hochschule.de/~kred/akmedgeo/imgs2007/ |
| Description | Lancaster Religious Studies Event |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | I presented a paper, 'In the Arms of the Church: The Religious Discourse of Family Duties and Social Services in Ireland', at the Negotiating Religious Identity Conference at Lancaster University. This was jointly organised by the Department of Geography and Religious Studies. Given the distinctive case-study of the paper, it stimulated a lot of interest and discussion afterwards, and extended the reach of my work to a wider academic audience. After my involvement at the conference, the co-organiser and I have become close academic colleagues who have since organised other events. |
| Year(s) Of Engagement Activity | 2007 |
| URL | http://www.lancaster.ac.uk/ias/events/religidentities/programme.htm |
| Description | Liverpool Medical Sociology Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | I presented a paper from the fellowship research entitled, 'Care and Dependency: the terrible twins? Family Carers of Young Adults with Intellectual Disabilities' at the Medical Sociology Conference in Liverpool. This was my first time presenting at a sociology conference and my research was very well received. It stimulated a lot of questions afterwards as delegates were particularly interested in my geographical work on care. Presenting my research at this conference was an important step in widen the scope and reach of my work to a wider audience. It also helped stimulate further correspondence and connections between myself and delegates at the conference who attended my presentation. |
| Year(s) Of Engagement Activity | 2007 |
| URL | http://www.britsoc.co.uk/medical-sociology/medsoc-annual-conference-archives.aspx |
| Description | RGS-IBG |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other academic audiences (collaborators, peers etc.) |
| Results and Impact | I presented a paper, 'Family Carers of Young Adults with Intellectual Disabilities', at the Royal Geographical Society /Institute for British Geographers Annual Conference, in London. This was an important event as it showcased my fellowship research to my academic peers for the first time. It was well-attended and sparked questions afterwards The participation at the RGS-IBG conference helped copperfasten my research profile within the field and bridge connections with other geographers whose work I had read. Many of these people have subsequently become close peers who I have continued to work with together on subsequent events and collaborative projects (e.g. Dr Ed Hall, Prof. Chris Philo, Prof. Christine Milligan) |
| Year(s) Of Engagement Activity | 2007 |
| URL | http://www.rgs.org/WhatsOn/ConferencesAndSeminars/Annual+International+Conference/Past+conferences.h... |
| Description | Welcoming Communities Exhibition |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | We showcased photographs taken by research participants (adults with learning disabilities) and findings from our research project. We chaired break-out discussion groups after a morning and afternoon session with local disability service providers and families. After the project, we were able to build on new contacts in the field of disability service provision and local city authorities (adult day service commissioners). |
| Year(s) Of Engagement Activity | 2013 |
| URL | http://www.southampton.ac.uk/geography/news/events/2013/10/welcoming_communities_event.page |