Charity websites offering information to vulnerable people have special problems to resolve, say Peter Williams and David Nicholas.
We might assume that information in the field of health is critical to both self-care and professional treatment. However, many people may be reluctant to use this valuable resource. Perhaps they deny that they are in a situation where information is needed or they may feel information is not what their situation requires. Perhaps they would like information but are embarrassed about getting it, or they may be worried about the bad news it might contain. Similarly, there might be situations in which an information provider is reticent to fulfil the role, for fear that the information might do more harm than good.
This article outlines research into the experiences of five charities for various groups of disadvantaged youngsters, financially supported (in common with the research project) by the Diana Princess of Wales Memorial Fund. The project brief was to determine the extent to which the websites of these charities improved access to information for disadvantaged young people. The purpose was to review the extent to which the original aims of the funded project were realised through the development of the websites, and to determine how their design was driven by the specific needs of particular user groups.
We hoped, by the end of the project, to develop a template for the design of similar websites within the sector. We published our resulting guidelines last year in Update (Nicholas et al, March 2004, pp. 35-37).
Here we look at the qualitative interview research carried out with site developers and other staff at two of the charities, which, for reasons of anonymity, we will refer to as Charity A and Charity B. Charity A works in the field of eating disorders and Charity B offers support for bereaved children. We highlight the issues raised and tactics for overcoming some of the problems inherent in providing information to vulnerable groups.
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Charity A
Charity A provides information and help on eating disorders – anorexia nervosa, bulimia nervosa and binge eating disorder. Information includes details of specialist treatment available in the UK. The charity also provides a nationwide network of self-help and support groups, plus postal and phone contacts. It operates a telephone helpline for people with an eating disorder, their family, friends and professionals, plus a ‘Youthline’ offering information, help and support for young people aged 18 years and under.
Charity B
Charity B supports bereaved children and young people. It also offers guidance and information to their families and friends. Founded in 1992, it was originally established to meet the needs of bereaved children in one county, but now offers a nationwide service. The website was described as an integral part of the service that Charity B offers – one of the means by which the charity supports bereaved children and their families.
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Why information is not taken up
The issues raised by either one or both of the charities that related to a lack of take-up or provision of information included:
1 reluctance to recognise a need to act;
2 problems with anonymity and confidentiality;
3 the provision of sensitive information;
4 dealing with people in denial or celebrating their condition;
5 mishandling information queries.
1 Reluctance to recognise a need to act
The main issue for both charities is that because of the nature of the topic and the situation of the youngsters, the target audience may be reluctant to seek information or recognise a need to act. People may enter a website with trepidation and be, in the words of a staff member of Charity B, ‘on the verge of flight’. In commissioning their website, staff drew up a list of negative emotions likely to be experienced by first-time visitors, in order to tailor content accordingly. They include:
- caution (‘are you going to preach?’);
- diffidence (‘I don’t need any help’);
- anger (‘no one can help’);
- isolation (emotional and physical);
- anxiety (about new responsibilities – ‘I’m the eldest, everyone expects me to cope’).
Bearing in mind these possible emotions, the website tries to avoid being patronising or to provide false comfort: ‘We try not to present people with a host of fluffy bunnies and teddies.’ (The organisation’s original logo did, in fact, feature just these things, but has since been replaced by a paw-print.) The tone has been set as warm and ‘caring but not cloying’, approachable and accepting (of people’s feelings, choices, lifestyles). The information content, not surprisingly, is designed to be trustworthy, reliable and professional, although there has been an attempt to avoid being too serious.
Those who find the website may be only too keen to have an excuse to leave, so the charity is making sure its technical features lead to easy navigation and information retrieval. Specifications to potential system designers included:
- quick accessibility, because of the likelihood of the young person clicking away rather than waiting;
- crystal clear navigation;
- a reasonable font size;
- minimal plug-ins.
Charity A draws reluctant visitors in by using a personal approach. For example, there is a page written by a sufferer, Tess, who ‘is 24 years old and was diagnosed with anorexia two and a half years ago’. The hope is that people will relate Tess’s story to their own experiences and begin to trust the site. The organisation has not, however, gone to the lengths that Charity B has in attempting to overcome this problem.
2 Anonymity and confidentiality
Two issues relate to the preservation of enquirers’ anonymity:
Age information: this is required to tailor information to various age groups and is of concern mainly to Charity A. Users giving fake ages is not the only problem. Sometimes those who give their correct age have been mentally affected to the extent that their mental age is lower than their real age. Indicators such as writing style and vocabulary in emails reveal discrepancies, but it is difficult to find out whether the mis-match is between stated age and correct age or between correct age and mental age.
Enquirers at risk: some people sending emails (or telephoning these charities) may be suicidal. It is sometimes difficult to reconcile a policy of anonymity with the desire to provide help. What happens, for example, when a clearly suicidal correspondent wishes to remain anonymous? At what stage does the organisation try to trace messages back to source and break its pledge? This is a real dilemma for Charity A staff, who have decided that the saving of human life transcends promises that might be made to callers. Although this might sound an easy decision, one has to consider that the next time the person may feel suicidal they may decline to contact Charity A, knowing their anonymity will be compromised. Their decision not to seek help may then, of course, put them at even more risk.
3 The provision of sensitive information
Information providers such as Charity A do not wish to disseminate widely some of the material it posts on its website, because it contains information that could be more damaging than helpful both to sufferers and their carers. This includes, for example, mortality rates – 18 per cent of sufferers do not survive the condition, a statistic that, not surprisingly, Charity A would rather not disseminate to vulnerable people.
There used to be a password system to access this area, but this proved to be impractical. Now the pages are simply ‘hidden’ – they are on the site, but not referred to or connected by hyperlinks, and do not include meta-tags, in order to deter robot indexers from adding them to a searchable database. Only researchers or carers, etc who ask for information are given the URL.
4 People in denial or celebrating their condition
A big problem for Charity A is to reach people who have an eating disorder but who either do not recognise this, actively deny it or, in extreme cases, positively celebrate it. On the opposite end of the scale, common eating ‘fads’ can be mistaken, often by parents or carers, for disorder symptoms (e.g. cases of toddlers who refuse to eat anything but marmite sandwiches). The approach in both cases is to provide comprehensive and accessible information.
However, with regard to the problem of denial or celebration Charity A has had to do more than educate through its own website. It has actively lobbied ISPs (Yahoo was mentioned by name) to remove the apparently substantial number of ‘pro-anorexic’ sites flourishing on the internet.
One feature of the site that will have to confront the problem of denial is the planned message board. This is in the development stage – the page set to host the messages currently advises visitors to go to the BBC Health site where there is a heavily used eating disorders message board. Message board conditions are being devised, including the prohibition of ‘pro-eating disorder’ opinions. Messages will enter a queue before being posted, to be read and accepted or rejected by a member of staff in the role of moderator.
5 Mishandling information queries
In addition to problems of potential users not wanting information, or of providers not wishing to disseminate it, there is also, of course, the related problem of providing incorrect or inappropriate information. Staff at Charity B are more susceptible to making this mistake than most organisations, due to the problems inherent in answering queries from children on the sensitive subject of bereavement. These arise from children’s limited understanding of disease and treatment.
An apparently not uncommon response by a child to the death of a loved one hospitalised for a long period is to assume the doctors were somehow responsible. This follows a logic that is not difficult to understand, and enquiry staff are trained to deal with such cases. However, more difficult are questions such as, ‘Why did the nurses change the colour of mummy’s hair?’. Gentle probing by a member of staff elicited the fact that during the course of the hospital stay the patient’s hair reverted, untreated, from its dyed blonde – the colour with which her young children had been familiar – to its natural brown. Clearly, teasing out details to get to the bottom of questions like these will present a greater challenge with email than with face-to-face meetings or the telephone.
Information is not a panacea
Underneath the seemingly straightforward practice of providing and disseminating information, a number of important issues, difficulties and decisions have to be faced when dealing with groups of people who are particularly vulnerable. These include tailoring information for chronological or mental age; respecting or violating confidentiality; dealing with misconceptions, condition-denial and reticence to seek information.
The research has highlighted that information in itself is clearly not the panacea it has been declared in this digital age. As the charities have shown, developing a website entails far more than simply posting some information sheets online.
Peter Williams is Senior Research Fellow at Ciber (Centre for Information Behaviour and the Evaluation of Research) and David Nicholas (david.nicholas@ucl.ac.uk) is Director of Ciber and Head of the School of Library, Archive & Information Studies at UCL.
Updated: 19 April 2005