Carers’ experiences of person cared for receiving a psychiatric diagnosis

Almost all the carers we interviewed said the person being cared for who was experiencing severe mental health problems had received a psychiatric diagnosis, and some had been given multiple diagnoses over their lifetime. Obtaining diagnoses could be seen in different ways. Most carers focused on the sequence of events that preceded and followed the person being cared for receiving a diagnosis. Some commented on what they perceived to be the usefulness of having, as Lisa put it, a ‘label’ that people could draw ‘comfort’ from. A few carers described their view that diagnosis was problematic in that they saw it as a concept which, in Lisa’s words, ran the risk of ‘reducing’ people diagnosed with severe mental health problems ‘down to a group of symptoms’.

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The process of the person being cared for receiving a diagnosis
What it meant for the carer when the person being cared for received a diagnosis
The impact of diagnosis on the person cared for
Multiple diagnoses

The process of the person being cared for receiving a diagnosis

Most carers had supported the person being cared for during the process of obtaining a diagnosis. A few of those interviewed were carers of spouses or partners who had received a diagnosis some years before they met. Mike and Laura’s partners told them about their diagnoses before they started going out. Some parent carers were not told directly by a medical practitioner when their son or daughter was given a diagnosis. Iris recalled finding out that her son, who was a teenager at the time, had been diagnosed with schizophrenia when she read about it whilst filling out forms: ‘I remember still how that was a shock to me because I was never told’. A few carers heard about diagnosis from the person cared for sometime later.

Rosemary’s son was given a diagnosis some time before he told her. She was relieved when he told her himself.

A few carers, like Tracey, described the process of the person being cared for receiving diagnosis as straightforward: ‘she was diagnosed … pretty much on … the first or second meeting with the psychiatrist’. But for many it took some time for the person cared for to receive a diagnosis and effective treatment. Laura’s husband had been diagnosed with bipolar disorder and schizophrenia before they met. She said that, based on what he had told her, it seemed ‘quite hard to get a diagnosis, because they have to do it over several years and circumstances can change’.

Bev described a gradual process of her son receiving his diagnosis. It took several appointments with medical practitioners, and eventually hospitalisation, before her son was diagnosed.

Some carers said that the person being cared for was given a number of different types of medication in order to find something that would work before a diagnosis could be made.

Sue said her son was given a variety of different medications before being diagnosed.

A few carers thought that the person being cared for who experienced severe mental health problems, had struggled to understand what was happening to them, and that this could delay diagnosis and useful treatment. Some carers like Alexia, Jeannie, Kate and Iris said they thought the person cared for was ‘in denial’ or afraid to seek help. Some also commented that people who experienced ‘mental illness’ could hide the full extent of their experience from their family. James, Elena and Alex all mentioned that their sons had initially refused to seek help. James felt his son may have been afraid when he was a teenager of the ‘stigma’ commonly associated with seeing a psychiatrist.

Elena’s son, who was a teenager at the time, did not want to see a psychiatrist because she said he didn’t think he needed to. It took several years to get help.

A few people, like Katherine, felt they had to accept that the person being cared for had to make their own decision: ‘the individual that you’re caring for … they’re an adult now and so they’ve got their own way of doing things too’. However, seeing the person cared for experience difficulties, and not being able to get help could be a very challenging time for carers. Many carers wanted more information and support for themselves during that time. When Bronwyn’s son asked her not to take him to see a psychiatrist she ‘didn’t realise then how ill he was, that this aggression was not him saying, “I don’t want this”. It was just him being ill’.

What it meant for the carer when the person being cared for received a diagnosis

Some carers found the process of the person cared for receiving a diagnosis to be a sad time. Bev and Bronwyn said they were ‘gutted’ when their sons were diagnosed with schizophrenia. At the time, Bronwyn had seen it as ‘incurable’, ‘stigmatised’ and leading to isolation and ‘a solitary life’. However, Bronwyn said she later came to ‘understand’ that her initial beliefs about schizophrenia had been misconceptions: ‘people need to know schizophrenia can be treated and controlled and that there might be people in this town who have schizophrenia … and you wouldn’t know’. A few carers said they had initially taken the diagnosis of the person cared for as a sign that they had failed in some way. Julie initially felt ‘shock and guilt’ when her daughter was diagnosed. Lisa said she thought medical professionals when giving a diagnosis seemed often ‘quite detached from the impact that those labels have’, on the person being diagnosed and his or her carer.

Sue explained how her own experience of depression affected her initial response to her son’s diagnosis and her thinking about how she could support him to ‘recover’.

But for others, like Dianne, Tracey and Kate, there was an immediate relief when the person cared for’s mental health problem was named because they felt it meant there was some explanation for the perceived changes in their loved one’s behaviour and personality. In Kate’s words, it had ‘validated the fact that there was something not right’. However, the relief could be short lived. Tracey said that while getting a diagnosis was a relief for her it was followed by concern about what to do next: ‘How the heck do we get ourselves out of this?’

For a few having a diagnosis for the person cared for meant facing the prospect of a potentially challenging future lying ahead. Elena reflected, ‘it was a matter of accepting the fact that things could not go back and learning how to deal with what was happening now and in the future’.

The impact of diagnosis on the person cared for

Several carers talked about the impact a diagnosis had had on the person being cared for. For some, like Lisa’s brother, it was devastating: ‘he described it as a death sentence … [he thought] no one will employ him now’.

While some, like Katherine, said the person cared for had ‘accepted’ his or her diagnosis others, like Alexia and Sasha, said they had not ‘accepted it’. Sasha hoped her son would get ‘a better awareness of his sickness’ so he ‘could take responsibility’.

Alexia described seeing her son’s psychiatrist with her son and asking the psychiatrist to explain his son’s ‘personality disorder’ diagnosis. Her son didn’t agree with the diagnosis and left the appointment.

Katherine recalled her son was upset at being hospitalised, but she thought he later came to accept his diagnosis.

Some carers explained that receiving a diagnosis was very important to the person being cared for, although not so much to them as his or her carer. Alex and Sasha did not think the ‘label’ mattered. Alex regarded diagnoses as ‘just words’ but said that his son got ‘very cross’ if Alex mentioned the wrong diagnosis.

Although Iris thought it was a good thing that her son had accepted his condition, she also believed having a diagnosis had undermined his self-confidence.

Multiple diagnoses

Some carers said the diagnosis their loved one received had changed over time. Bronwyn’s son had received a diagnosis of schizophrenia (from a psychologist) and separate diagnoses of post traumatic stress disorder, psychosis, and paranoid schizophrenia from psychiatrists. Most carers said they often did not know why the diagnosis had changed. Some thought it was because it took time to fully assess the person experiencing severe mental health problems, or because a person’s experience did not match exactly an available psychiatric ‘label’. Lisa thought diagnoses could be arbitrary: ‘it just depends which professional you’re seeing on the day’.

Elizabeth said although her son’s main diagnosis was bipolar disorder, there was ‘psychosis attached to that’. She described how later medical practitioners settled on schizoaffective disorder ‘with bipolar traits … connected’.

Many carers commented that it could be confusing when a person’s diagnosis changed. While George understood his son’s initial diagnosis of Obsessive Compulsive Disorder, he was not sure he agreed with the diagnosis of paranoid schizophrenia. He had asked for his son’s mental health problem to be reassessed.

Lisa explained how having different diagnoses has affected her brother, sometimes giving him a sense of relief and sometimes not. She said she didn’t understand why his diagnoses changed.