workshop 5 sus comp camhs

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Learning from children’s and parents’ views of mental health and stigma Dr Fiona Gale Regional CAMHS Programme Lead (East Midlands) National Lead for Primary Mental Health Work in CAMHS National CAMHS Support Service, CSIP


Scott: Someone who is ‘mental’ means they are crazy. Crazy, crazy, crazy. (Age 9) Fiona: What do you think ‘mental’ means? Solomon: Crazy! (Age 5)


Fiona: What do you think the word ‘mental’ means? Colin: Someone with problems like me… (Age 8)


Karen: Mental health… Someone who is happy with everything, and is doing the best that they can within their ability, and being happy with that… (Parent) Janet: I’d just like him to be like other children … the [professional] has told him that he is different to other children… (Parent)


Stigma ‘Stigma is a societal reaction which singles out certain attributes, evaluates them as undesirable and devalues the persons who possess them’ Miles, 1981 ‘ Stigma can increase the complexity of mental health problems and the impact they have on the individual’ Social Inclusion Unit, 2004 ‘Stigma operates at a number of levels within individuals, families, education systems, healthcare, the media and social policy’ Hinshaw, 2005 ‘Children acquire attitudes about mental health at an early age’ Wahl, 2002


The Study Examined the perceptions of mental health and stigma in children aged 5-11 years, and their parents/carers. The participants were selected from children who had been referred to the local specialist CAMHS services, for the first time. The sample group consisted of 20 children, 16 boys and 4 girls and 23 parents/carers. In the parent group, there were 17 females and 6 males, between the ages of 30 and 57. 10 were single mothers, and 3 were grandparents.


Methodology Qualitative study Phenomenological approach, using Interpretative Phenomenological Analysis (IPA) (Smith, 2003). IPA enables the researcher to make sense of the participant making sense of their own world. Data Collection method: Semi-structured interviews with both children and parents Children’s data collection tool uses 3rd person approach, with specifically designed pictorial story “ Spacey and Jupiter's Mission” to aid children to talk about perceptions and experiences of mental health

Spacey and Jupiter’s Mission : Guided (3rd person) Interviews: 

Spacey and Jupiter’s Mission : Guided (3rd person) Interviews

Spacey and Jupiter’s Mission: 

Spacey and Jupiter’s Mission


Findings 9 common themes emerged for both children & parents/carers: i) Definitions of mental health ii) The experience of self-stigma iii) The experience of public stigma iv) Unintentional stigma v) Feelings of shame and of being ‘different’ The denial of mental health problems in children The legacy and language of mental health Fear of mental illness The impact of children’s services and stigma


Definitions of mental health Both parents and children found it hard to define mental health Children were able to give more positive definitions Most definitions related to illness aspects, problems or severe descriptions of difficult behaviour The children in the group were able to describe others with good mental health, but often describe themselves in negative terms


John (describing his own mental health): Yeah, sometimes I cry… [sometimes I get] super duper worried. I always get worried…’ (Age 9)


ii) The experience of self-stigma Self-stigma is the experience of stigma with mental health problems (Corrigan and Watson, 2002) Children described this as being ashamed, marginalised and feeling different to peers Ordinarily parents would not experience self-stigma, but would experience Courtesy Stigma (stigma by association). In this study, the experienced huge amounts of stigma, which seemed to originate from the close relationship and responsibility for their child. Self-stigma by proxy As a result, both groups experienced shame, blame, prejudice and discrimination


William: “I feel ashamed and I can’t talk about it… I have a dark secret…” (Aged 10)


iii) The experience of public stigma Parents and children described the effects of public stigma They described being treated unfairly and discriminated against by peers, family, the community and by organisations This exacerbated feelings of shame, and made them less likely to admit to the problems, or a tendency to avoid seeking help until a crisis occurred Parents tended to communicate their feelings of shame to children


Alison: “ I think there is a lot of people out there, you know, they see someone has a mental illness, and you know, they go ‘wow’… And they step back and they walk the other way.” (Parent)


iv) Unintentional stigma Parents demonstrated a motivation to change attitudes toward mental health On the whole, Children showed positive knowledge of mental health Children where more likely to show empathy toward peers they defined as having similar problems to themselves However, both groups inadvertently contributed toward Public Stigma, through entrenched attitudes and beliefs about mental illness


Martin: “ People who are mental are horrible…” (Aged 7)


v) Shame and difference Feelings of shame and difference are communicated between the parent and child, contributing to feelings of powerlessness and low self-worth This seems to affect social activities, family outings and integration into classroom situations. Children seem to remain on the periphery


Angela : “ My child is not a ‘nutter’. It’s getting over to them that he needs help for other reasons, not because he is totally nuts…” (Parent)


vi) Denial of mental health problems Most perceptions were related to the concept of mental illness in adults The ability to recognise that children could have mental health problems was greatly hindered Many of the parents simply wanted emancipation from blame They thought this would be achieved through denial of problems or by gaining a diagnosis


Fiona: Do you know any children with mental health problems? Will: No Fiona: Do think there are any? Will: Don’t know… Will: Have you ever met anyone like this? [with problems like me] (Age 10)


vii) The legacy & language of mental health The concept of mental health is hard to understand, whereas ideas about mental illness seem entrenched Ideas about mental illness paint a difficult picture, often examples contain violent imagery and associations with dangerousness Language use includes stigmatising words and references to historical ideas of institutionalisation The language of stigma is deeply entrenched in everyday dialogue


Colin: …another word for mental is ‘evil’ (Age 8)


viii) Fear of mental illness Both parents and children have a fear of danger related to mental illness Also there is a fear that children might develop severe mental health problems


Robyn: …I am very scared… there is something wrong with me…I think I might be mentally ill. (Age 11)


ix) The impact of services on stigma Both children and parents identified that children’s services contributed to their feelings of stigma This was attributed to: Deficits in professionals knowledge Stigmatising attitudes from professionals Poor communication strategies, between agencies and with families Lack of clarity about what services provide and their referral criteria Not understanding what specialist CAMHS does Very poor access to information about what to expect from CAMHS


Sadie: I had to go through so many channels. It feels like, like for years, I’ve been going through the system… (Parent) Harry: I am worried because I thought they might give me an injection… (Age 9) John: …I might have to spend a million hours there… (Age 9)


PUBLIC STIGMA CHILDREN PARENTS Increased stigma and social exclusion Self-stigma by proxy Self-stigma Communicated stigma Increased mental health needs leading to crisis Courtesy Stigma Struggle to access help Lack of knowledge about services Figure 7.1: Communicated stigma: The effects of stigma on parents/carers and their children Communicated stigma: the effects of stigma on parents and their children


A multi-dimensional framework for tackling stigma in children and families


Fiona: Do you know what mental health means? Scott: Is it like being in love? Scott: Like being in love and being dumped? (Age 8)

How can you have an impact?: 

How can you have an impact?


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