Carers’ experiences of searching for information

Many of the carers interviewed described searching for information as an important and ongoing part of supporting the person being cared for. Finding out appropriate information transformed how many carers understood and responded to mental health problems, the experiences and actions of the person cared for, and how carers regarded themselves.

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Searching for information in the ‘early days’
Types of information
Sources of information

Searching for information in the ‘early days’

Most carers said they knew very little about ‘mental illness’ prior to the person cared for being diagnosed with a ‘mental illness’. General Practitioners (GPs) were often the first source of information for many carers. Many carers viewed GPs as helpful because they knew the person being cared for and understood his or her other health conditions (see also Carers’ experiences of General Practitioners). Some carers initially relied on other mental health practitioners who were helpful in assisting them to understand the diagnosis and other aspects of the condition. However, most carers said they experienced finding information about caring for a person with severe mental health problems to be an ‘overwhelming’ and lonely task.

Once her son received a diagnosis, Bev had to ‘hunt out’ information.

Many carers emphasised the importance of receiving timely information about the mental health problems of the person being cared for. Some said this was particularly important for learning about medication because they believed they needed to assist the person cared for to understand why medication was important. Several carers said that learning what ‘to look out for’, as Kate put it, had helped them to distinguish between the ‘illness’ and the person.

Kate sought information soon after her brother was diagnosed to understand what this meant for him as he seemed reluctant to share what he was going through.

Some carers found it difficult to take in information at the time the person cared for was diagnosed with ‘mental illness’; the diagnosis came as a surprise to many carers and made them concerned for the future.

Elizabeth found it difficult to remember what she was told about her son’s diagnosis. She was ‘very stressed’ but the diagnosis meant she knew what information to search for.

Receiving information at the right time was particularly important for a few carers who cared for children and young people because treatment needed to be received at the appropriate stage in their development.

Christene felt that she had a ‘whole wasted year’ in her grandson’s treatment because it was not explained to her how ‘children’s brains develop’ and what this meant for his mental health.

Many carers said searching for information could be emotionally draining and time consuming. However, some carers said that as their experience increased over time they felt they needed to search for information less, and that they did not have to be constantly, as Julie put it, ‘on the alert’.

Types of information

The majority of carers said they most often searched for information about treatment and support services available to them, what being a carer entailed and, as Bev said, ‘what to look for’ in relation to symptoms that could require medical attention.

Rowan experienced difficulty finding out what he needed to ‘be alert to’ and when to ‘make the phone call’ in an emergency situation involving his wife. As a result, Rowan said he had to do a lot of research himself.

Most carers felt they needed to understand the roles and responsibilities of the various health practitioners, what services they could provide to the person cared for and what the rights of the person being cared for and carers were regarding service provision.

Some carers said they appreciated information resources that reassured them that they were not to blame for the mental health problems of the person cared for. This information was most often found through support groups and information sessions provided by mental health organisations and general advocacy groups for carers (see also Carers’ experiences of support groups, support workers and respite care).

Alexia described how joining a carer support group helped her to ‘overcome’ the discrimination she said she had experienced within her ethno-cultural community after her son went to hospital following his first episode of psychosis.

Sources of information

Most carers found it was necessary to seek out more than one source in order to find all the information they needed. Some carers had volunteered for various organisations, such as a mental health helpline, a carer support group and a hospital Research Ethics Committee (REC). Some carers said helpline training and support groups taught skills and strategies which they said had been useful for better understanding theirs and the person cared for’s situation.

Sue found information from the health services her son attended, his psychiatrist, support groups, the internet, volunteering on a helpline and attending group activities with her son.

Mental health practitioners were the most important source of information for the majority of carers about medications and their side effects. Psychologists were described by some carers as helpful for carers’ understanding of what it was like to experience ‘mental illness’. Psychologists also provided useful information that carers could discuss with the person being cared for. Some carers said there were things carers really needed to know about being a carer, such as what it was like to live with someone experiencing severe mental health problems, which were not within health practitioners’ expertise.

Some carers said they were aware that health practitioners’ duty of care was primarily to their patient. For many carers, a main hindrance to finding out information from practitioners was the perceived lack of clarity on the part of both practitioners and carers regarding what information the law enables practitioners to give carers. The relevant section of the Mental Health Act 2014 (Vic) is 346(g), which enables disclosure of information in general terms to a friend, family member or carer, providing this is not contrary to the views and preferences of the person concerned, while section 346(h) enables disclosure of information to carers where this is reasonably required for determining the nature and scope of the care to be provided.

Julie found her daughter’s psychiatrist was supportive of her daughter but that he was ‘quite unhelpful’ when Julie asked him for advice about how she and her husband could better care for their daughter.

Some carers described needing information but not requiring support via an organised group. For these carers some information sessions run by various hospitals, non-governmental organisations or not-for-profit organisations were particularly appealing. A few found such sessions difficult and stated that they required a lot of effort to find.

Saskia found that some programs did not actually provide the mental health services that their websites said they made available.

Most carers said support groups for people diagnosed with ‘mental illness’, their carers and their families were a major source of information about how best to care for a person experiencing mental health problems. Many carers felt hearing about the experiences of other people living in similar situations was both informative and resonated with their own experiences (see also Carers’ experiences of support groups, support workers and respite care).

Non-governmental organisations devoted to mental health were highly regarded by most carers because they provided very useful information about what being a carer entails. Many carers said they appreciated their up-to-date and reliable information. One carer, Iris, said she thought they were often ‘a bit removed’ from intensely personal stories, which could be upsetting for some carers.

Julie’s daughter’s psychiatrist suggested she look at a specific mental health website, where she found a great deal of information for people experiencing depression. But Julie said it did not offer guidance specifically for how carers could better support people experiencing depression.