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A strong sense of uncertainty pervaded the parents’ accounts of their experiences. One element of this uncertainty concerned their understanding of their sons’ condition, expressed clearly by Grace recalling her plea for help from professionals:

“I don’t know what is happening to my son” (Grace, 9, 135).

Confusion surrounded many aspects of their sons’ presentation, treatment and prognosis. Before beginning the interviews, participants had been given information sheets explaining that the research focused on negative symptoms, and this prompted several comments (unfortunately sometimes before or after the recorded

interviews) relating to confusion about the meaning of the term “negative symptoms”. This issue arose during both John and Victoria’s interviews:

John: I’ve heard of negative and positive, I’m a bit confused-you’d think

positive would be something good but it isn’t actually (John, 6, 90-91).

Victoria: I’ve been told, but I just don’t understand (Victoria, 5, 75).

All the parents spoke of their bewilderment in terms of the meaning of their sons’ symptoms and there was a multitude of comments suggesting uncertainty about the causes of their sons’ “strange behavior” (Karen, 25, 416). Reflecting on her perceptions of her son’s alogia, Pauline recalls:

I didn’t understand it, I kept saying “why wont you speak up?”, but looking back now I realise now he was ill, he couldn’t manage, he couldn’t, he just couldn’t, he just spoke in a whisper (Pauline, 10, 162-163).

The parents rarely mentioned “psychosis” and often seemed confused about their sons’ psychiatric diagnosis, as the excerpt from Karen’s account implies:

I thought he’d had a break down, um we never ever found out, we’ve never had a diagnosis, the closest diagnosis we had was one doctor said he was bipolar, and I did get paperwork off me own doctor and it did make sense, the symptoms were

so similar it did make sense, and then another one was they said he was psychosis which was psychotic, that half made a bit of sense but it didn’t explain the other stuff, I think I was more inclined to believe it was bipolar and I dunno I don’t know what’s made him like he is now (Karen, 4, 65-70).

Karen’s uncertainty about the cause of her son’s difficulties is echoed in many of the other accounts, with parents hesitantly mentioning many possible contributing factors, including religious belief, drugs, involvement in criminal activity and genetic factors as well as blaming themselves. Grace encapsulates the uncertainty about the interaction of such factors:

I think he was, um I think he was mentally ill, I wasn’t sure whether it was the causal connection was the mental illness, first of all he was just naughty with other children…and then I realised that he was taking cannabis as well, so I don’t know whether the cannabis was the causal connection to each of if it’s just something that happened through natural occurrence (Grace, 10, 151-153).

The professional treatment offered to the sons also presented as a major source of confusion and uncertainty. The accounts revealed themes relating to lack of clarity about different professional roles and services, and how to access support, as the following example demonstrates:

Victoria: _{If I didn’t work in the field (within Social Services) I wouldn’t know} about any of the issues, I wouldn’t know what questions to ask, I wouldn’t know where to go, who to approach if I needed support or if I need information or if I’m not sure about something, so you know working in the field it’s really beneficial to me because there’s a lot of people um in the services or family are carers and they don’t know anything about mental health, who to go to, what questions to ask (Victoria, 17, 279-283).

It appeared that the sons’ medication was perplexing to the parents, with seemingly unanswered questions arising about why their sons needed medication, which medication they were taking, how long they would need to take it and what effects or side-effects it might have:

Grace: I think they also changed the medication, and from the time they changed

the medication he has been better. Initially he was on another type of medication, I’m not medically trained I don’t know what sort of medication it was but maybe he didn’t get on well very much with that one (Grace, 6, 87-90).

John: he’s worried that the medication he’s on is um affecting his brain and we

don’t really know how it works, and we have asked the question and that hasn’t really been explained particularly well (John, 3, 50-52).

A further aspect of uncertainty relating to their sons’ illness concerned the future: both in terms of their short and long-term recovery and their prospects and general well-being once their parents were no longer able to care for them. Karen and John reflect this uncertainty and Victoria the anxiety that accompanies it:

Karen: they just said that things will get better as you go along (Karen, 8, 126).

John: _{we’re a bit in unknown, we don’t know what to expect (John, 5, 76).}

Victoria: I worry in case something happens to me what’s going to happen to

Steve, you know…how would he cope….whoever was caring for him how would they care for him, cos no-one’s ever going to do the same level of care that I do, as his mum (Victoria, 9, 147-14).