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Reading about self-help for carers: books, leaflets and websites

Published online by Cambridge University Press:  02 January 2018

Jan Oyebode*
Affiliation:
School of Psychology, University of Birmingham, Edgbaston, Birmingham B15 2TT
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Abstract

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Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution (CC-BY) license (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
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Copyright © 2006. The Royal College of Psychiatrists

Although there is a lot of information available about specific mental health problems, which may be as useful to carers as to service users, information that focuses on carers themselves is fairly sparse. Much is directed towards those who support someone with a long-term condition, for example, parents of disabled children or those caring for an elderly frail person. There appears to be remarkably little information specifically for carers of adults of working age with mental health problems. However, some of the fundamental issues faced by carers are probably common across conditions. These include how to cope with the carer-cared for relationship, how to deal with the turbulent emotions that can be aroused, how to respond to difficult behaviour and situations, how to navigate through the maze of services and how to break through the isolation that comes with being in a caregiving role.

Books and booklets

Books are perhaps the least accessible and flexible source of self-help material for carers. Bookshops and libraries do not generally stock a large selection. My trip to a major branch of a well-known bookseller in Birmingham revealed just two relevant texts. A search of stock available through Amazon (http://www.amazon.co.uk) brought up more titles, including 22 focused on caring for someone with dementia, 12 on general issues of care-giving, 6 on caring for a child with disability and just two on supporting someone with mental illness. The books include personal accounts, practical manuals and guides on emotional survival. However, one drawback is that the market is dominated by American authors whose cultural and service context may not transfer readily to other countries. One example which illustrates the American expression of ideas is a book synopsis which invites the reader ‘to take a first step in healing from Alzheimer's ripple effect by beginning to journal about the experience’ (Amazon, 2004).

Standing out among those in the general category is a book by Hugh Marriot (Reference Marriot2003) with the provocative title The Selfish Pig's Guide to Caring. The author, who is a carer himself, has produced a treasure of a book. The text is thoroughly focused on the carer and not on the person being cared for. The writing has an inimitable style that allows the author to tackle home truths and taboo subjects in an unflinchingly head-on manner, including areas such as incontinence and sexual intimacy, feelings of rage, fears of going mad and abusive behaviour. It includes a mix of information and advice coupled with a dose of positive thinking.

Another good general source is the third edition of the Carers’ Resource Book (Reference McCraeMcCrae, 1998). This is a Scottish publication and some information is centred around services in Aberdeen, but it gives excellent and wide-ranging coverage, including a chapter on the needs of young carers.

There are also shorter booklets available, usually focused on a specific condition. In the dementia field, Who Cares? Information and Support for Carers of Confused People (Reference Jee and ReasonJee & Reason, 2001) stands out as one of the most useful brief publications available, providing clear and relevant advice. Living with a Stranger (Reference StillwellStillwell, 1997) sounded a promising booklet about supporting a person with depression, but its assumptions that the carer is always in a loving relationship and its emphasis on religion (‘As a carer you are already being used by God’, p. ) will be off-putting to many. Caring for Someone with Depression (Reference BattisonBattison, 2004) has a helpful dual focus on information about the condition and also on stress relief.

Leaflets

Being shorter and more readily produced, leaflets can offer up-to-date information free of charge or at a very low cost.

Carers UK, formerly the National Carers Association, publish a range of booklets that are free to carers. These fall into the three categories of practical (e.g. How Do I Get Help? A Guide to Assessments), emotional (e.g. When Caring Becomes a Crisis) and financial (e.g. Dealing with Someone Else's Money), addressing frequently asked questions. They provide sound basic information.

In the mental health field, MIND produce two factsheets for carers, How to Access Services - Information for Carers and How to Cope as a Carer. These include aspects specific to adult and older adult mental health that are often neglected in the more general leaflets on caregiving. They are well structured and give good basic advice and suggestions. The topics range from the practical, e.g. coping with crisis situations and legal advice, through to areas such as getting emotional support. The Royal College of Psychiatrists (2004) provides a useful two-page checklist for carers of people with mental health problems, suggesting questions it could be useful to ask a psychiatrist.

When it comes to specific areas, the Alzheimer's Society is impressive, with its current list including 80 factsheets, all updated at least since 2000 and covering topics ranging from MMSE - A Guide for People with Dementia and Their Carers to Travelling, Sexual Difficulties and Feelings of Guilt.

Moving from old age to childhood, the Royal College of Psychiatrists produces a series of over 30 leaflets directed at parents and teachers on a variety of topics connected with mental health and growing up. With their back-to-basics approach and their simple language, there is a danger that some may come across as stating the obvious. However, others give a valuable summary of facts in areas such as attention-deficit hyperactivity disorder and autism.

Websites

Websites provide a more informal and interactive source of self-help than printed matter. Websites have tremendous potential for carers as they allow those who are unable to leave their home to browse for relevant information, to ask specific questions and to have contact with others. There are many well designed, easy-to-use websites but it is not always easy to locate them. The website http://www.carers.gov.uk sounded full of promise, but it proved to be part of the Government's commitment to ‘Caring about Carers’ and was focused on the dissemination of government policy. Its discussion forum is not intended for carers as it is only available to local authority carers’ leads. ‘ Connects’, the Mental Health and Learning Disabilities Portal (http://www.connects.org.uk), which is run by the Mental Health Foundation, aims to be ‘a worldwide interactive website for the sharing of information by people interested in mental health problems and/or learning disabilities’. A search for sites concerned with carers yielded 168 possibilities, but following through was frustrating as some links were not working and others were to unhelpful sites. Presumably once web development slows down it will prove easier to access helpful sites but at present I would recommend it to professionals rather than to a stressed carer.

The best sites have a treasure trove of riches, including personal stories, chat-rooms and discussion (bulletin) boards, information leaflets and booklists. That of the Princess Royal Trust for Carers (http://www.carers.org) stands out as an excellent site that is well organised and user friendly. The ‘ Help for Carers’ pages give basic information with good onward links and include a useful section for Black and minority ethnic carers. There are two lively discussion boards with one focused on caring for someone and the other being a place for ‘poems and stuff’. When I visited ‘ Caring for Someone’, there had been 12 new topics introduced in the previous 3 days, with an average of 6 replies for each. This is a sign that carers are finding this a useful medium. The relatively heavy use of this discussion board contrasts with many others that are struggling to become established. Carers UK has a partnership website (http://www.carersonline.org.uk) that aims to provide national and local information. This is very easy to use, with some of the factual information on benefits and other rights being particularly well organised and written in plain English as well as ten community languages. Help the Aged (http://www.helptheaged.org.uk) also have an easy-to-use site, with similar clearly worded information.

Turning briefly to specific areas, Contact a Family (http://www.contactafamily.org.uk), a London-based charity for families with a disabled child, actively promotes self-help. They are able to put families in touch with any of 300 national groups dealing with specific disorders, as well as offering help to parents to set up and run new groups or put people in touch with others locally.

At the other end of the age range, the Alzheimer's Society's website (http://www.Alzheimers.org.uk) offers a full range of information and support. This includes a section for gay carers and another titled ‘Real Lives’ with material from carers in their own words, ‘Helpline Online’ which offers fortnightly sessions when questions can be answered by experts and a discussion board, and ‘Talking Point’ which has splendid, caring moderators.

References

Amazon (2004) Extract from review of Granger P (2004) Shared Stories from Daughters of Alzheimer's: Writing a Path to Peace, iUniverse (http://www.amazon.co.uk, accessed August 2004).Google Scholar
Battison, T. (2004) Caring for Someone with Depression. London: Age Concern.Google Scholar
Jee, M. & Reason, L. (2001) Who Cares? Information and Support for Carers of Confused People. London: Department of Health.Google Scholar
Marriot, H. (2003) The Selfish Pig's Guide to Caring. Clifton-upon-Teme: Polperro Heritage Press.Google Scholar
McCrae, A. (1998) The Carer's Resource Book, 3rd edn. Aberdeen: Princess Royal Trust Carers Centre.Google Scholar
Royal College of Psychiatrists (2004) A Checklist for Carers of People with Mental Health Problems (leaflet). London: Royal College of Psychiatrists.Google Scholar
Stillwell, V. (1997) Living With a Stranger. London: Gaskell.Google Scholar
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