Wednesday, 19 March 2014

Online Carer/Caregiver forums - the pros and the cons

Caregiver forums can be set up by anyone, from reputable NGOs or charities, to individuals wishing to help others in similar situations. Naturally the main intention is to offer help, support and advice, to others.

Over the last year I joined a number of online forums and websites offering such support to caregivers. Whilst many caregiver forums are helpful, in many ways, I discovered, in some cases, they can also, like many forums, be a source of discontent between members, as well as offering up inappropriate, non-professional, advice.

Some of the things I found somewhat disturbing on a few forums, were posts by individuals offering advice about subjects, they actually knew nothing about. At the very least, this is unhelpful, and, at the worst, such advice can be downright dangerous, both for the caregiver and the caree, especially where new caregivers are concerned.

Whilst many forums are well run and well moderated, others are not so. The ethos behind some, is to allow freedom of expression and opinion, over and above, safe, sound advice. There are of course various jurisdictions which allow freedom of speech, and whilst this is to be encouraged - inappropriate, unsafe or dangerous advice, or any form of defamation, should be dealt with as quickly as possible.

New caregivers may experience the initial shock and stress of having to accept a role, that is often unexpected, and for which, they are totally unprepared. During this vulnerable stage, they may readily accept advice that more experienced caregivers know to be wrong, and in some cases, completely unsafe.

Whilst a balanced approach may be the reason given for not intercepting inappropriate advice, when reported to administrators or moderators, such a reason may often ignore the situation a caregiver seeking help, may find themselves in. Is it right to allow such advice to be given in the first place? In doing so, it must also be right to allow others to contradict, knowing as they do, through experience, that such advice is wrong? This can be both confusing to the person seeking advice, and lead to discontent, or even conflict, between established members of the forum.

Some caregiver forums are strictly members only, some have a mix of public and members only areas, whilst others are completely in the public domain. Those partially or fully in the public domain, should ensure that any advice follows accepted and safe caregiver practices, the advice is, after all, available to anyone browsing the forum. Wherever possible, especially where professional advice is required, administrators and/or moderators, should be empowered to ensure that seeking such advice, is paramount. To allow unsafe advice to be given, without the appropriate caveats, could, in certain circumstances, be irresponsible, and, in some cases, dangerous.

Should such inappropriate advice be heeded, and result in injury or death - legal action, against both the forum, and the person responsible for that advice, becomes a very distinct possibility.

It is an unfortunate fact, that some caregiver forums do not take their responsibilities seriously. Worse still, they do not have in place a robust moderation system, nor do they have appropriate legal disclaimers or terms of service. Fortunately, the majority of caregiver forums are generally very good, and offer excellent and friendly support to other caregivers, who find themselves in need of help.

As the result of my experiences, I set up my very own caregiver forum. Whilst the forum is still very much in its early stages, it has proved to be useful to the handful of members it currently has. There are sections for those seeking advice, and many of these areas contain links to recognised NGOs and charities, and in some cases, government departments, where members can find appropriate, professionally backed, advice. The primary function of the forum is to provide a friendly and informal meeting place for friend and family caregivers.

A very good Twitter friend in the US, also has a website, complete with caregiver advice and support, chat rooms, blogs and forums. The welcome message there is:

“As you care for family members and friends, we care for you.

We're a community of family caregivers sharing stories, support and solutions about caring for a family member or friend.”