Parents,WaitingandtheSocialDeterminantsofHealthFINAL

Paul Astley August 2016

This work by is licensed under a Creative Commons Attribution-ShareAlike 4.0 International

License.

Please contact Healthwatch Stoke if you have paid for a copy of this report.

http://creativecommons.org/licenses/by-sa/4.0/



Contact – [email protected]

1

The author’s intention is to share the learning gathered as part of this work solely to improve service user experience.

Therefore, it is intended to be public and the authors are determined to preserve free access to it.

To protect our rights this paper has been published under a Creative Commons Attribution-Share Alike 4.0 International

License. This means that the data and report can be shared and this should be without a charge. Please contact us if

you have paid for access.

(https://creativecommons.org/) –

Contents

Methodology ............................................................................................. 2

Summary ................................................................................................. 2

Recommendations ...................................................................................... 2

Introduction. ............................................................................................ 3

Social Determinants of Health – Analysis ............................................................ 4

Narrative - Courtesy Stigma & Mental Health Literacy ........................................... 5

Our Participants ...................................................................................... 6

Health Information Seeking ........................................................................ 9

Other Points Parents Made ........................................................................... 12

Advice from Parents for Parents .................................................................... 12

Appendix ................................................................................................ 13

Autism Journey – Case Study ...................................................................... 13

This report has been produced in partnership between Healthwatch

Stoke-on-Trent and Scope Face 2 Face.

Many thanks to all the people who contributed by agreeing to be

interviewed or attended events.


2

This document explores the extent to which waiting for mental health services impacts

upon the social determinants of mental health in parents. All four of the parents which

contributed (and one child) are users of a service called Scope Face 2 Face1 which enables

parent/carer peer support. They are parents of children with behavioural disorders and

autism. They each had semi-structured interviews with a Healthwatch Stoke-on-Trent

member of staff. These interviews were then analysed to understand how their stories

interact with the social determinants of Mental health. Blue text in the document denotes

interview extracts.

This report finds that waiting for mental health services does impact upon the

determinants for mental health in parents. It finds that although attitudes to mental

health have improved, parents of children still feel stigmatised. Low levels of Mental

Health Literacy and therefore understanding of conditions enable an environment where a

multitude of opinions about causation proliferate. Because of this, parents find they have

to navigate a barrage of perspectives from various sources including teaching professionals

and family, some of them attributing blame to themselves, thus driving feelings of guilt

and responsibility. This can lead to erosion of the social determinants of health through

feelings of isolation or indeed, may encourage them to isolate themselves.

It is found that participants experienced diagnosis as a barrier to the help that addressed

their needs. This help is described as advice regarding self-help and signposting which

perhaps could be delivered without diagnosis. In order to overcome this, parents describe

using the internet for help and advice, in particular forums although these were found to

be of variable quality. All of these things impact upon the Social Determinants of Mental

Health.

Support self-help without requiring a diagnosis (allow autonomy);

Significant investment in Mental Health Literacy for all (reduce stigma);

More holistic, family focussed delivery.

1 http://www.scope.org.uk/support/services/befriending/about-face-2-face


3

This section illustrates the mechanism by which waiting for mental health services for

young people impacts upon themselves as well as those around them. What is clear is that

there could be an impact upon the wellbeing of carers and subsequent ability to cope with

the demands of their role. In order to maintain their own wellbeing, both children and

those around them are dependent upon the social determinants of mental health (below).

A long wait for services erodes the determinants, leading to increased potential for

decreasing wellbeing, maybe ill health and a possible cycle of depreciation. This report

investigates how this works through combining the outcome of interviews with service

users and secondary research. Firstly, it examines the stigma, why and how it affects

parents. Then it moves on to explore how parents cope with the situation they find

themselves in through seeking self-help, describing the barriers to this.


4

Although the cohort interviewed was small, it is still possible to construct the below table

which illustrates how the social determinants of mental health could be affected.

2 https://www.vichealth.vic.gov.au/media-and-resources/publications/a-plan-for-action-2005-to-2007

Parents of Children (ASD) Social Determinants - Based Upon Victoria Model2

Context Mechanism Outcome

Theme

Evidence

(from parent

interviews)

Social Connections

Supportive

Relationships

Involvement in

Group Activities

Civic

Engagement

Free from Fear,

Discrimination &

Violence.

Valuing of

diversity

Physical

Security

Self

Determination

Economic

Participation

Work

Housing

Education

Money

Courtesy Stigma

Withdrawal. x x x

M H Literacy Offered conflicting views on causation by various sources.

x

Waiting uninformed

Unaware how long wait will be.

x

Unable to work

Low or non-attendance at school inhibits ability to earn.

x

Lack of Signposting

No signposting until diagnosis.

x x

Lack of focus on whole family

Not feeling listened to or engaged with service.

x

Further mental Illness

Parents described impacts in this regard.

x

Resource quality

Variability in quality of web resources

x x


5

Courtesy Stigma & Mental Health Literacy

This section focusses upon stigma. In mental health, much is written about it. Indeed,

the Five Year Forward View for Mental Health3 begins by stating that this has been going

on for far too long. To understand this more, an organisation called Time to Change has

been measuring social attitudes to mental health since 1994. In their most recent report4,

it was found that since then, attitudes have improved. For example, the percentage

agreeing that ‘People with mental illness should be excluded from public office’

decreased from 29% in the 1990’s to 18% in 2012. Other studies also suggest a change. For

example in an American study, it was found that those with a mental health condition

were not viewed in a stigmatising manner nearly as much as those with substance abuse

issues5, another domain heavily stigmatised. Some room for optimism then it seems?

However, to what extent this apparent change for the better actually impacts positively

upon patients and their families in reality is unclear. What is clear is that parents who

spoke to us as part of this study clearly perceive stigma, rooted in some surprising places

and perhaps borne out of some questionable reasoning. This following investigates this

through user testimony and aligning it to secondary research such as journal articles.

Compared with Health Literacy, Mental Health Literacy isn’t a topic that has been well

researched. A search for academic papers reveals a relatively small international

community that shadows its’ more mainstream, more developed counterpart. However,

what research there is reveals that although public attitudes towards mental health may

well have shifted, when it comes to understanding what is a very broad kaleidoscope of

mental health conditions, understanding is pretty basic. For example, “In western

countries, depression and schizophrenia are most often seen by the public as caused by

the social environment”6 although their relatives would see the biological as more

important. In other cultures, to this day, the cause may be seen as supernatural

phenomena or even witchcraft! Discourse is indeed varied and allows for

misunderstandings such as telling someone with depression that “there’s always someone

worse off than you are”.7

3 By the Mental Health Taskforce, NHS England - https://www.england.nhs.uk/wp-content/uploads/2016/02/Mental-Health-Taskforce-FYFV-final.pdf 4 http://www.mind.org.uk/media/463374/118308-attitudes-to-mental-illness-2012-report-v6.docx 5 Corrigan et al, Blame Shame and Contamination; The Impact of Mental Abuse Stigma on Family Members, Northwestern University 6 Jorm A F, 2000, Mental Health Literacy: Public Knowledge and Beliefs about Mental Disorders, BJP 7 More gems at - http://www.health.com/health/gallery/0,,20393228,00.html


6

Our Participants

When struggling with their children’s behaviour, our participants all described navigating a

barrage of opinions, rooted in this varied discourse and coming from a variety of sources

including school staff, other parents and their own families. Everyone, it seems, has an

opinion, many of these misguided.

The above suggests that the cause suspected as social. One can understand the roots of

this sort of thinking or the epistemology of it. For example, understanding could be

misconstrued, such as the fact that the adults in the poorest fifth are much more likely to

be at risk of developing a mental illness than those on average incomes8. In isolation,

8 http://www.poverty.org.uk/62/index.shtml

“I didn’t know what was going on with my child, I was confused and everyone was

giving me different opinions on what was wrong with my child, everything from

he just needs discipline to he just needs a good smack to maybe he is autistic. All

these different opinions and you start blaming yourself as a parent”

Interviewer – Where were these opinions coming from?

“My parents, friends, people at the bus stop, everyone had an opinion, the

school, different teaching staff . . .”

In your previous quoted extract, you have attributed it to an interviewee –

should it not be the case here?

“I was told – Are you sure it’s not you, are you not tough enough with her, is it because

you are a single mum? The blame was all put on me. I was called an over reactive,

negative mum . . . which didn’t help.”

Interviewer - Who was calling you an over reactive mum?

“The School”


7

without further reading this could seem like an explanation in itself. This perhaps opens

wider the space for opinions to flourish within and also the ability to wrongly identify

certain life practices as culpable.

Corrigan et al found that,

“Generally, research shows that psychiatric disorders are viewed as more blameworthy

than physical health conditions like cancer and heart conditions”9.

Some conditions are more prone to this than others. For example, studies over previous

decades have led many to believe that “ADHD is a disorder rooted in cultural and social

factors”10. This patchwork understanding of mental health only drives confusion and

ultimately, complicates life and the plight of those looking for answers in a practical

sense, as well as perhaps leaving them open to stigmatisation. Indeed, Kutcher (2016)

says that,

“a lack of knowledge is considered to be a driver of prejudice (negative attitudes) that

then influences behaviours (discrimination)11”.

The truth of course is that people in poverty are more likely to struggle with the social

determinants of mental health and that in any case, factors including physical causes,

family history and psychological causes are just as relevant. These other factors merely

live in a social context.

This lack of knowledge can be viewed, and indeed it is helpful that it is viewed, through a

Health Literacy lens. This provides a useful framework for understanding stigma.

Attempts by parents to navigate this sea of opinions, driven by low mental health literacy,

perhaps even as a parent without the means (help and advice from a reliable source) to

9 Corrigan et al, Blame Shame and Contamination; The Impact of Mental Abuse Stigma on Family Members, Northwestern University 10 Youssef et al, 2015, Knowledge and Attitudes Towards ADHD Among Teachers, Sage 11 Kutcher et al, 2016, Mental Health Literacy: Past, Present and Future, Canadian Psychiatric Association

“what was picked up at his playgroup was his speech delay and I felt very

bombarded by the whole, ‘you are not reading enough to your child at home’ but I

was! I was doing everything!” - - - - - -


8

develop further your own mental health literacy, means it is understandable how parents

may feel a sense of confusion and guilt.

Research shows that blame is not uncommon, indeed the resulting internalised feelings of

guilt are the result of something Ervine Goffman12 called Courtesy Stigma. Goffman

described how it,

“predisposes an individual close to someone affected by stigma to be judged negatively as

well, purely because of the individual’s association to the stigmatized person” (ibid).

Mueller et al describe how “Mothers appeared to be particularity vulnerable to self-

stigma. Statements by other parents, friends, as well as family members led many

mothers to engage in internalising feelings of shame and accusation.”13

Also, “the criticism by others has been found to have negative consequences on the

mother’s wellbeing as reflected by moderate to large significant correlations between

criticism of parenting style on both depression and perceived social support” (ibid)

This does affect people. Mueller et al’s paper described how 40% of parents withdrew,

resulting in social isolation, directly eroding at the determinants of mental health (page

12 Goffman E, 1963, Stigma, Penguin. 13 Mueller et al, 2012, Stigma in ADHD, Journal of ADHD 4:101-114

“I can’t take my youngest daughter who has no issues many places because I don’t

know how her sisters will be so she is missing out”

“one day I did actually say, after a really bad day, I’m not going out again. But

I’m that kind of person, that I’m so stubborn that I will not hide my children

away”

Going out normally on typical weekends can be quite challenging for * because

there are quite busy areas.


9

Health Information Seeking

In the environment described above there are many pressures acting upon an individual

and it may be difficult for them to find the quality advice they need. Although sometimes

lucky (one participant described an excellent teaching assistant), our participants proved

to be resourceful. They described barriers to the signposting and advice needed to build

specialist skills that would help them cope while they were waiting. In particular, it may

be difficult to access advice without diagnosis.

Without formal or reliable informal support, parents turn to the internet. As well as being

popular (all parents mentioned it) it is importantly, accessible even to people who are

socially isolated (provided they have the IT skills of course). This is not something typical

to this cohort. A recent publication by the Office for National Statistics14 showed that

more people use the internet to search for health information than information about

education (2013 up from 2007).

14 Retrieved from http://webarchive.nationalarchives.gov.uk/20160105160709/http://www.ons.gov.uk/ons/dcp171778_322713.pdf

9

24

25

28

31

31

43

50

50

55

66

75

0 10 20 30 40 50 60 70 80

Doing an online course

Looking for a job or sending a job…

Telephoning or making video calls over…

Selling goods or services over the Internet

Downloading software (other than games…

Looking for information about education,…

Seeking health related information

Internet banking

Using services related to travel or travel…

Reading or downloading online news,…

Finding information about goods and…

Sending/receiving emails

Internet Use

When you are on a waiting list you don’t get no support.


10

The sources of information available are not homogenous but varied in terms of delivery.

Some found peer support through forums.

Cole et al (2016)15 found that the nature of forums is quite different from other sources of

health information on the internet. They found that,

“discussion forums (are) more conducive to the transfer of good quality information than

other types of websites.”

This is primarily because of the value of peer support, as well as the way in which users

are able to comment on each other’s contribution, correcting them as necessary.

However, parents may still need to learn how to best navigate these sites and be able to

differentiate between those that are, or are less useful.

15 Cole et al, 2016, Health Advice from Internet Discussion Forums: How Bad Is Dangerous?

“You look on lots of forums, looking on the internet for different things, so Netmums

and MSAAA, National Autism Society. You become like a researcher because you are

constantly looking for different support groups to support you.”

There is a lot of support online. However, how useful some of that support is, is

questionable. There is a lot of extreme opinions online. So you could a nice official

one (like Face2Face) and its monitored and great and there are lots of unofficial ones

out there. Again, there are lots of people telling them how to look after their kids,

very opinionated people, you get trolls online. There are perhaps groups that parents

need to steer clear of.

. . . . what you do need is coping mechanisms and management techniques.

. . . . strategies around anxiety techniques.


11

The sorts of information that parents seek will vary by condition, but amongst our parent

group people were looking for skills that would address the immediate need16.

Considering the context that this is information seeking is occurring in, one participant

suggested that the need for information could become overwhelming. Easy to understand

how this could happen when you are both concerned for you child and perhaps

stigmatised.

There seems to be some evidence that diagnosis is perceived as a barrier to help and

advice that could perhaps be delivered without it.

16 More work could be done here.

. . . . . when seeking information, people shouldn’t get overly overwhelmed and look

for other things in your life, look for other interests. Don’t let that become the focus

of your life because your child isn’t sat there thinking about their autism, they are

just thinking about their life. You need to get out there and enjoy life although it’s

very hard to when you are feeling not well. That’s when you need support.

Interviewer - So along your journey, has anyone ever signposted you or has the focus

been upon getting a diagnosis before that happens?

“No, because school wouldn’t recognise he had a disability, they wouldn’t support

him, they didn’t tell us about (what used to be crossroads), we didn’t know about

Aiming High activities. Going out normally on typical weekends can be quite

challenging for j because there are quite busy areas. Now we have a diagnosis it opens

up doorways because we can access groups now”


12

Care could be more holistic and whole family (cooperative working?);

Expectations could be explained at the outset;

Triple P courses may not be suitable in all cases (in this environment may even add

to feelings of stigmatisation);

Job Centres may add pressure (when children are in school for reduced hours or

perhaps excluded);

Day Care for Autism would help.

Interviewer - “If you could go back and give advice to yourself, what would you say?”

Be prepared to wait;

Be open minded;

Avoid the blame game;

Find interests away from home;

Seek peer support;

Learn coping mechanisms.


13

Autism Journey – Case Study

18 months – Tantrums – Interested in specific objects

Health visitor- First Steps – PPP – Therapist – Intervention – Discharged

Age 6 – School Concerns (School Nurse) – First Steps – PPP – ASD Assessment (didn’t

meet criteria (18 month wait)- Discharged

CAMHS did observation in school and the school put on a ‘good show’ with extra

rewards and things, then portraying the perfect child.

Behaviour at school became worse, got the point where he was only doing one hour *

(At school the head teacher didn’t like swearing . . . . . as soon as I got in, kicked me

out again – child)

1 hour (for 20 months) at school a day. Asked the school for a statement for him, they

said they couldn’t do it, also put in a parental request into CAMHS for support again,

we had to go on the waiting list for another ASD assessment. On assessment, the

school put on wonderful show again, again we were told he didn’t meet the criteria.

Worked with our MP for second referral out of the area and got the funding. Went to

Midlands psychology and their observation of autism was completely different to Stoke.

They observed him in three settings. After about 8 weeks in total, they said that * met

the criteria for autism.

It’s taken until age 11 to get that diagnosis.

His High School wouldn’t accept his diagnosis for autism because it was out of area

even though it was funded by the NHS. This has had a negative impact upon * Mum

feels that it may be too late for * now.

Parents,WaitingandtheSocialDeterminantsofHealthFINAL

Documents

Transcript of Parents,WaitingandtheSocialDeterminantsofHealthFINAL