Job retention Anne McCarthy

Good afternoon, ladies and gentlemen. I am going to talk to you about the research project that I did last year and I hope that you’ll find some interest in it. You’ve all heard of this wonderful Celtic tribe in Ireland and the economic growth in Ireland is the second highest in the OECD. Three quarters of all growth are in small and medium-size enterprises. The private sector services are up by 20% since 1990. So we are really growing faces. And from this programme programme-led interventions we are going towards objective-centred initiatives. New integrated approaches advancing everywhere as I am sure they are in your countries as well. And from the national level partnerships they are developing local community level partnerships and never before has the national ethos been so fertile for new initiatives and present centred strategies to emerge and succeed.

Despite this the vast bulk of unemployment is experienced by 20% of the population and one of the worst unemployment black spots in the country is very near to where I live, where I work in Ronastown And these were the statistics brought out by the Partnership Area Action Plan of ’96 which were the local government thing. So I was commissioned to do some research. My research briefly is that Partnership commissioned me to do some research and the research brief was to find out why many trained young people from the Llandollan area where there are plenty facilities and lots of training programmes going on were leaving their jobs, many were good workers and yet they were all dropping out of the system. This envisaged enterprise culture that we were hearing about in the new year, somehow there was an imbalance between that and the local workforce.

Training centre graduates between 17 and 23 years were not staying in their jobs and over 40% under 25s were unemployed over 1 year. I know it’s an appalling statistics because it was all out there for them. Now the scene was, we had low participation on all the education and training programmes, little motivation to avail of the services. And what there appeared to be was a lack of and a need for a psychological infrastructure and a community mind thirst to match the business and industrial structure that was developing. The demand of the late 20^th century and new millennium they were not equipped to meet them. So what were these barriers to participation and success? Many of them are very bright young people. Has industry changed? Have people changed? Was there correspondence or was there conflict? So that was what I set out to do. So the first thing I did was delve into the literature and it was totally depressing. And first of all you had the usual establishment literature. The statutory provision, the wonderful government publications were all wonderful, and very much the new vocationism and the expression I like and I think it described very well what’s happening “All these new programmes that we are hearing about: extra training, staying on in school, all these incentives hold the new vocationism.”

At the other side you have these lone researchers who nobody listens to and nobody reads were doing these wonderful researches listening to the young people themselves. And what is coming across is a separate culture, a whole cultural identity that was very strong and was not going to be changed no matter what you did with it. And there is also evidence of a responsibility delay, was this new vocationalism here developing a responsibility delay in young people and this youth culture with all its side effects with the  result of this? Industry and capital definition were the mould of the perfect trainee, the perfect product. What are the motives for this? There was a clash between careers and identity, did they identify with careers or just with jobs? There were a huge kind of clash there. Education was not considered schooling, school and education are not synonymous. You can be educated anywhere. Education is an approach, a development, it does not have to be in a building. We were talking about giving them qualifications yet all the young people were interested in was wages, you know this paper qualifications had no meaning for a lot of them. You had all the OECD, EFO plans, government publications, ESRI which is Economic and Social Research Institution, over here, now I’ve got some sheets of paper over there which I’d like to call the alternative bibliography and I have them there is anybody’s interested.

But these were the people I discovered who were showing that there was a fierce cultural identity there and in fact a lot of young people that we’re talking about are no different from what they were a hundred years ago in the industrial revolution, it’s a society that has changed, no necessary the young people. And the two different view points and clashes that I found was youth is the problem within one side of the literature, youth has a problem, so I’d like to approach from the view point: youth has a problem. So that was the way I looked at it. Now, my units of study. I took the target group and my target group are going to be trainees who’ve been placed in training centres in the area between 1/1/95 and the 31/12/96 and then I had the secondary unit of study which were the employers because I’d had to get a match there. And these employers would be referred by the respondents. My sample frame was seven registered in the area and I said registered for those of you who were at my workshop this morning know that our clinic centre has about three registers because we are totally integrated centre, so you see the OCT there’s actually one training centre with three registered. We have the  Llandollan Youth Switch system, the St. Oliver’s is for travellers, young people, in Ronastown we had young people with learning difficulties and also early school leavers. Link was employment based training. We had those, entire project is a project which is run by the Department of Justice, of which some of my past pupils attend and it would be for people who had been in a risk for crime and the youth service as well. So that was my sample.

Now, the questionnaire, we decided to do it by questionnaire, and we matched the two questionnaires. We had identification factors for both the target group and employers, and then we looked at the attitude and the psycho-social factors, the age of the mothers, numbers going to work and leisure time, etc. And then we matched this side with the employers to see if there was a correspondence between the two, where the clash was, what is the problem. The support, who is the most trusted person, quality and quantity, manual work, job image and what necessary skills they think, what abilities and disabilities of the employers feel. So kind of did it like that, satisfaction, aspirations and strategies and then the interview factors and I was going to see if there was clash or if they matched.

I wanted to bring a point about the administration because it was really, it told us an awful lot about the community we were dealing with. We had first of all the contact problem. The training agencies, we had to go to the agencies to get the co-operation for the units of study and to get the registers from them. Then the units of study were the target group and the employers, we had to do that numbering and coding and piloting, that was quite a while. However, we were very very restrained by time and money and the rest of it, I had to do it in 6 months and I had the other job as well, so it was very very intense. Now, this was the key to the whole thing. The response rate was unbelievable, there was a big black hole out there, they just would not be interviewed, we couldn’t find them, there was all this intangible and the name of the research name by the way is the Elusive Workforce because that’s exactly what they were. Now, of the entire population which is a very very large area only 96 people had finished training because I registered with the people who actually been placed in jobs, 96 which was merely very very low in itself, then when we went to sample them we got 32 and we had to get a substitute sample of sticks, I am going through it very quickly because it’s an afternoon and I don’t want to go overtime. Now, these were the samples. The numbers were much smaller than we thought, though it did help us to do a more in-depth study but the low numbers were very significant in themselves. Because they didn’t want to be contacted, they felt threatened by it, also they got lost in the system which is very interesting as well. Now, the field work, I just wanted to give you an example of the field work, it was a nightmare which we had not expected, we thought the difficulty would be in the research itself, but it wasn’t it was in finding. It was very funny actually. Here is a target group problem: contact difficulties. Many of them we approached and asked them didn’t want to, they felt threatened, so many of their ex-training centres said that they could come back and visit them and we did interview them on this in their territory and we wrote letters, phone calls, agency appointments. Agency appointments mean that they could come to their agency have a cup of coffee and answer a few questions. We wanted to make it as unthreatening as possible.

So 46, as you can see the approach was 46 and the response rate frighteningly was 22. And a non-response we, multiple approach means we went out and we knocked on the doors and it brought it up a bit. So that was it. The reason for the noncompliance they didn’t keep an appointment - 5, no response to the letters or phone - 8, they just didn’t answer them, and 1 had emigrated, so we were told refusal and working on a lorry. And the employers: we only had 5 non-responses from the employers, didn’t have time, didn’t know the client, not for a month later, don’t want to know, so we only had 5 of those.

Now I am going to go very quickly over the areas of correspondence. And by areas of correspondence I mean the things at the areas where there are mutually advantageous systems and there was no great clash between the two cultures, cultures of work and the culture of the young person. So the 8 profiles of correspondence where they dove-tailed, they weren’t the same, but they did dove-tail were recruitment, induction, mobility, skills, conditions, supports, disability and manual work. So there is no problems with those areas, there is interesting findings that there is no problems.

The three profiles of total incompatibility and where the problem is where there is no dove-tailing whatsoever was in the personal, educational training and then in retention. So we hold it down to those three by confirming that there was no problem in the other areas. But the two areas of the nature in age difference and I wish to stress that I was not looking for an age differences I found them, were between males and females, manufacturing and service sectors, very subtle little differences which were very important.

Brief summary. Significant key factors were the eight profiles of correspondence and I am going very briefly through this. Target groups: significance of personal approach when you are trying to recruit somebody from a disadvantaged area. It must a very personal approach, they are terrified of interviews, paperwork, the whole lot. From the employers point of view the service sector found qualifications less important. Manufacturing is far more difficult, coming far more difficult now than the service sector and the future for many people will be in the service sector industry, the types of jobs and everything like that.

The induction to work: 71% have had enough training, they didn’t want any more training when they went to work, they just wanted to do the job and the most important people to teach them how to do anything when they went to work were their peers, nobody else, it’s the only people they wanted to hear. From the employers point of view on the job training was given, support from the supervisor was very important and the employers found that the training centre wasn’t an option at all, they much prefer to train their own people, they didn’t see why people went to training centres at all. So that’s weird. Now, the most important skills and this really depressed me enormously, the fact that they both agreed on this, up to top four out of 11 most important skills they agreed on attendance, time-keeping, safety and awareness, ability to communicate with co-workers for the target group. And then for the employers attendance, safety and awareness, time-keeping, dependability and reliability. So it shows that trainees are aware of what’s required and what they need to do and in fact they are very well trained, so there is no great clash there, but the bottom two were dreadful to adaptability and flexibility, good behaviour for the employer but the fact that both employers and trainees and graduates said that basic reading and writing didn’t matter. Now, I just found it very very depressing, as an English teacher I thought it was horrendous, but basic reading and writing that the employers don’t consider it important and there’s  2 or 3 ways of interpreting this whether they haven’t got enough respect for their employees to think that they need reading and writing or whether it just wasn’t important for the job that they gave them, there is a lot of different ways of interpreting this but nonetheless I thought it was a very interesting statistic and pretty depressing one.

Now, mobility was an interesting factor as well. It’s well known in the literature as well that really in the disadvantaged areas three miles is about the limit that people are willing to move to get a job and this statistics bore this out that they won’t really move beyond the community very much and when we went down and asked the employers they were not opposed to recruiting the local workforce. The reason for the preference of the local workers was the practical nature rather than their commitment to a particular locality easy access and that they wouldn’t be late was one of the things that I got. The negative responses concerned the lack of education, experience and qualifications in the locality, because I am sure it is the same over here in lots of disadvantaged areas there is a lot of industry is coming in from outside and it would be great if they would employ the local workforce. One manager said he didn’t consider this point at all, but an awful lot of them do. But they won’t go far away for a job.

Now, the most important working conditions. There was no great clash here at all, human factors, security factors, both the employers and the target group agreed that things like good conditions, good wages, all the security factors were important. So that was interesting.

Now, the disability issues. You may have noticed that I didn’t particularly highlight disability. I purposefully didn’t do that and I thought some factors, they were all young people together, I knew from the registers who had a disability and who hasn’t but I didn’t do anything special for them to see if something came out and it did. Employers had little doubt about the performance rating of persons with a disability and by that I mostly mean their learning difficulty. It was really in the areas of work pace and ability to comprehend instructions that they in fact thought that there would be a problem. But there was a cautious willingness to employ a person with a disability and provide on the job training, but a clear willingness to enter into partnership with a service provider for support and back up. So the employers clear willingness to enter into partnership with a service provider was quite definite. I’ll go very quickly now, I’ll go to the next one. They were willing to do support with support systems and this is interesting about manual work. There was very little difference between manual work but the employers said they didn’t think it was physically hard whereas the workers found them physically very difficult and demanding.

Now the areas of incompatibility I want to deal with very quickly where there was no dove-tailing personal education and training and retention. They all lived in house holds where there are only 5 or 6 six people, there weren’t very large and the women were more independent than the males. Now the most trusted person was interesting, that they all, the power of the mothers came out very very strongly which I had not expected, the person that they confided in the most was their mothers, very little confided in peer groups. The legal history wasn’t anything too outstanding. But most of it, the legal history had to do with car crimes. I am just trying to hurry this through now because the findings that are last are important. Now the night classes. Many of the males didn’t want to know about the night classes they were too shy to go but they all expressed the desire to learn reading and writing. And what came out very much out of the whole thing was that the need for the males to be given responsibility says image and training I think we are probably putting a little bit too much into females because a lot of them have babies and they develop responsibility much more quickly.

Now here is a disability factor that came out. When I asked them how many training centres they’d attended the only people who’d attended one training centre through the whole course and the only the people who in school to 18 were all people who happened to be in special services none of the others had. The employment profile: slightly more than half of the respondents were employed. Among the employed only three had stayed longer than 6 months in their jobs. Two of these jobs had ended because they were community employment schemes that had come to an end. So what came out of that was that the females weren’t working they had successful careers but they had to leave their jobs because they lacked child care facilities. They couldn’t attend because the child care and the jobs had come to an end because they were employment schemes. The males had left for other reasons. They had left due to boredom and all the rest of it. And there was really between 4 and 6 months was the time when they would leave their jobs. And I just deal with unemployment cohort here.

Seasonal work: no job available, that’s usually a way of sacking somebody anyway, they say it is not available, so you could lake it that the are fired really. The females stayed on and it was really outside their control. So what we found was that there was no work shyness, what there was was an ability and a willingness to work but a total no bonding with the workforce at all.

Positive conclusions: well-trained in work skills, well-trained to respect supervisors, correspondence between work-force and employers, no work shyness, motivation very good, employers were willing to bond with the training, to bond with training system and train them on the spot. The major influence is mothers who are terribly important and a positive attitude to employment of people with disabilities with correct support and a strong social class identity and that’s social class identity has to be given much more attention, it’s very very important.

The negative conclusions were: there was a huge confusion and cultural incomprehension, a black hole in this large drop-out rate, they just didn’t understand the things that they were meant to be learning or they didn’t know where to get them. The education and training is far less important to young people than employment. Wages, not qualifications is what they want. Low general education base, need for a mind set and a psychological infrastructure was confirmed. Young men need confidence employment responsibility. Young women need child-minding services,  and the huge possibility of a hidden disability was there.

The conclusions were denying the development needs of responsibility, confidence and personal identity. We need to simplify the system, it is too complicated for the young people to understand and it was very very clear when we were doing the research. The challenge to reduce unemployment is to bring out quality skill level while retaining a sense of cultural identity. Young people need to see a clear chain of connection between worthwhile job, training and qualifications, they don't see the connection and they are confused between the role of learner and the role of worker and we need to bring the three paradigms of work, education and training more closely together.

My recommendations were structural and developmental. The structural recommendations were to develop longitudinal research and to continuum of contact, the trouble is you go to one service and then you go to somebody else for something else, they need one support worker who will link them all to various paradigms like medicine, social work, welfare. It’s too complicated for them. The package approach to education, training and work. And I think they’ll only work if they are having a job as well, if the identity of a worker they will learn.

The developmental ones, Package approach, the power blocks problem. The medical power block, the education power block, the employment power block they are all fighting their own ends and the poor young person is just lost in the middle. So the intertwining and restructuring of those paradigms. We are trying it in own training centre and it’s working very well, but I ensure you the difficulty was at the power block side and not the interacting of the young people with each other, that was easy compared to the politics. So these paradigms at the moment and I am sure you have it in England here the structure, the communities, the partnerships, the agencies and the statutory bodies are getting together. But we also need to bring the paradigms together of medicine, education, sociology, they need to get together unemployment so that one person has one united system and one contact person to reach it. Thanks very much everybody.

Chairman: The next speakers are Mark Boyce and Daniel Forer who are programme co-ordinators with a group Chronic Illness Peer Support in Victoria, Australia. They are programme directors for the centre for adolescent health there in Victoria. Welcome.

The Power of Positive Peers  Mark Boyce and Daniella Forer

This paper draws on the presenters’ experience of working with adolescents living with chronic illness and their parents. The paper aims to present a snapshot of what it’s like to be an adolescent living with a chronic illness and what it’s like to be the parent of that adolescent by presenting two innovative programs which have been designed to offer support to these young people and their parents.

The Centre for Adolescent Health in 1992 established the Chronic Illness Peer Support (ChIPS) program which has been successfully offering support to young people for the past five years. More recently a parents’ support group has grown out of the program. Both programs combine traditional peer support with the unique philosophy that regardless of illness type similar challenges and issues will be experienced. The program is non categorical, meaning that participant live with a range of conditions such as Asthma, Cystic Fibrosis, Epilepsy and Chrons Disease to name a few.

 The ChIPS program operates on a five tier model of youth participation with the initial component being an eight week peer discussion group co-led by a trained peer leader (young person with a chronic illness) and a health professional.  These sessions run for ninety minutes one evening per week for eight weeks and cover topics such as school, hospitalisation, stress, family, relationships and social skills.  Within a ChIPS group there is a large component of pure peer support with the young people sharing their ideas, and methods of coping to help each other adjust to living their life with chronic illness.

Evaluation of the ChIPS program over the last two years suggests that the potential impact of the program includes enhancing coping skills, positive peer relations and emotional well being as well as decreasing isolation from peers, decreasing social and recreational restrictions.

The parents’ support group was established in 1997 following an exploratory study examining the issues faced by parents of adolescents living with chronic illness. The group has been set up by a committee of parents who have an active role in the planning, promotion and facilitation of the group in conjunction with two health professionals. The group aims to provide opportunities for parents to support one another, to share information and provides education around adolescent issues.  Through the examination of research and review of video taped interviews with parents and young people, the presentation will provide an opportunity to hear what young people living with a chronic illness and their parents feel about their experiences, in particular what gives them hope, encouragement and support.

Mark Boyce  First of all I would just like to say the last four speakers have gone through with us a lot of issues concerning young people with chronic illness, they told us about increasing isolation of those young people compared to their healthy peers, they told us about decreased self-esteem, decreased resilience, poor body image, lack of peer group, the importance of peer group to these young people. What I am going to tell you now is about possible solutions or one positive programme that you can implement and it is very implementable in every community to help address some of these factors.

The ChIPS programme - Chronic Illness Peer Support. It’s a peer support programme run by young people for young people and it’s non-illness specific programme and I have it on good authority that there are none non-illness specific programmes running in England or Europe at this time. And by non-illness specific it means anything, Asthma, Diabetes, Cystic Fibrosis, Reumoarthritis, for young person who’s had CVA, stroke, young people who had cancer – anything you can possibly think of, all in the one programme.  We work on a 5 tier model of youth participation and starts off with a eight week peer support programme, which is followed by ChIPERS – leadership trying-in, co-leadership and a reference group membership. Only one adult as such employed in the programme, everything else who does work on the programme does so on a small voluntary basis if they are adults, as it’s mainly run by the young people themselves. Imagine what it’s like to a young person who have Cystic Fibrosis or Arthritis and everywhere you go people know that, they know that you have a chronic illness or condition, your doctors know it, your parents know it, your brothers and sisters know it, all the health professionals know it, but for them there is no one really you can talk to, who can really put on their shoes and really understand what it’s like apart form other young people who have that condition or illness or similar conditions or illness. And at the peer support eight week group they come in to the room and in a group with another eight people with another chronic illness and condition and they know that everyone in that room has a chronic illness and condition of one type or another and they leave the illnesses outside, it’s not an issue anymore, and they can actually get to talk about real adolescent issues without their illness being an overpowering factor.

The eight week peer support group one night a week for eight weeks, meet for an hour and a half each evening and there are 6 to 16 young people of similar ages as you can imagine a 13-year old would have slightly different issues to talk about than an 18-year old. We are trying to keep to around three years age range: 13 to 16, 17 to 20. And what we at the end of the first night after we’ve done some get to know you sort of stuff and broken down some of the initial barriers that are always there because the young people don’t know each other,  we do a brain-storming session and we get them to talk about the things that really really like, the things that they have been able to do because of their illness that they wouldn’t have been able to do otherwise, and the things like camps, we have a make-a-wish foundation and show them throughout the world as well and makes them able to do various things. Get to talk about the things that piss them off, the thing that they hate the most, whether it be hospital food, doctor’s appointments, friends as school using them to us their illness to get out of schoolwork, lack of peers, lack of friends, as I say those things there and what we do for the next eight weeks, for the next seven weeks we talk about one issue in particular and go through it in depth.

The structure of the next eight weeks is also very important, if you have a group that has a lot of issues around, perhaps family issues, then you would schedule that for further on and you would do a friendly topic, perhaps school, for the first school After the eight week programme we found that these young people had all met and made friends with a group of people that they could really relate to, they could talk to about issues that were really bothering them and they wanted it to be on-going but we really wanted to avoid it of creating a group of young people that have a chronic illness or condition who are dependent on a group.

So what we do then in ChIPERS, ChIPERS stand for Educational ChIPS Education, Recreation and Social. And regular social activities at the end of each school term, so that’s once every three months there is a social activity, couple of training workshops helping throughout the year on things like first-aid training or perhaps we did an art workshop last summer, we do writing workshops, those sorts of things, they also receive a regular newsletter, which comes at the end of each school term and a magazine that comes out once a year. And this way they are able to continue their involvement with the young people that they’ve met in their initial programme as well as meet other young people with chronic illness.

Leadership training. When the group is actually run, it’s run by a health professional and a young person with a chronic illness who has gone through and done a leadership training programme. The health professional takes a back seat and is there purely as a backup for that young person and it’s the young person who actually co-ordinate the group. The three-day training programme focusing on presentation skills, group dynamics leadership roles and at the end of leadership training all participants are eligible to join a reference group and also of course to lead a group themselves. Who are leading up the group although it’s unresearched it’s been found by the young people to be the most rewarding factor of the ChIPS programme. After going through and being part of the group and realising that there are lots of other young people out there who have chronic illnesses won’t be the same that the issues that they are facing are similar, it’s challenging and rewarding for the young people themselves actually go on to lead the group. It forces them to look at themselves, how they are adapting, how they are coping what they are doing about certain things with their illness and then opening up and sharing that with the group of young people and helping them to come to terms and being to speak about their illnesses. Had a young lady recently who is 15 years of age, she has epilepsy and had not told anyone apart from her closets friend, and her mother and family obviously know about it. Now she’s on medications and is a bit delayed and hasn’t spoken at school about it or anything like that. After 7 weeks in the group she actually came out and spoke to her group and said that she had epilepsy and for her it was really a big step, there was actually her being able to speak about her illness with other people and she seems to have gone on from there to actually do a talk at her school about it and she’s actually doing a lot better from that now.

The reference group. The reference group is a governing body of the ChIPS programme, it’s a big body, it’s divided into three subcommittees as well as a regional representatives and I’ll talk about the regional bit in a moment. The subcommittees are the publications committee which does the newsletter there every three months as well as a magazine once a year. The magazine, it’s the first one right there, we actually just released the first 1997-98 ChIPS wrap-up and that goes to all the young people in the programme as well as the health organisations involved in the ChIPS programme. The social committee is the second committee and just have a look at the group over there, all the difference body shapes and sizes and we were talking about body image before. There is a beautiful beach just an hour’s drive out if Melbourne and we went out there this summer and on the way back I was talking with one of the girl and she was saying it was amazing that se actually got into her bathers and went out into the water today. If she had to go to the beach with her family there was no way she would have done that. It’s the power of the group of peers when everyone there that look different, there is a girl with a plaster casts, there is a girl walking with aids, there are people who have various ostomies and bags and stuff in the group as well and they all went out into the water, they all were in the water apart from the girl in plaster of course. And it is a very powerful thing that they felt OK to do that in this group, if they were just there with the mum or dad or the peers they wouldn’t have felt that comfortable to do that. So it’s really rewarding part of the programme.

The ChIPS programme as I said before with the reference group has regional programme that’s being set up at the moment. The programme was being researched over two year period by Craig Olsen at the Centre of Adolescent Health and he found that one of the most significant factors of young people with chronic illnesses that they had one or no friends that they can speak to about their chronic illness, that they felt comfortable talking with. So the Department of Health in Victoria has funded us for 12 months to set up a programmes across Victoria on the thought process that if people in Melbourne, the capital of Victoria, didn’t think that they had anyone to talk to, how much more remote will those people be in the regional areas outside of the capital where supposedly all the good resources are. So we’ve actually set the programme up in those areas and in the next 12 months we estimated that 200 young people with chronic illnesses will do the ChIPS programme.

I’ll now hand over to Danielle Forer who is working alongside me with this programme and she is setting up a programme which is called the Parents’ Support Group, just also want to mention that someone mentioned earlier that a siblings programme, they are actually undergoing a sibling research project and at the end of next year we hope to have a sibling programme running along the same lines so we’ll have chronic illness support for the whole family. Danielle.

Danielle Forer

The Parent Project that I am going to talk to you about now is a follow on from the ChIPS programme. Since ChIPS was running from 1992 there were a lot of requests from parents wanting support, they wanted ChIPS for themselves saying that they had issues they wanted to talk about with other parents as well. So in 1996 we began to look into the possibility of offering the support to parents and the aim of this project was to establish support network between parents who adolescent son or daughter living with a chronic illness. We at the Centre of Adolescent Health take a holistic approach to health and recognises that support is needed not only for the young person but for the entire family unit as has been stated today recognising that illness certainly affects the person who is living with the illness by the entire family unit. The parent project was set up in three stages and I just briefly run through it with you.

The first was research looking at the needs of parents. The second, we formed a reference committee similar to the ChIPS programme getting parents involved, and at the third we established a parent group at the start of this year. Just in terms of research which was conducted we did qualitative interviews with the parents of 10 young people to gain understanding of the kind of issues they are faced with and to look at what their needs were. These parents had children with various kinds of chronic illnesses including asthma, diabetes, epilepsy, cystic fibrosis and neuro-intestinal displasia which is a rare bowel condition. The findings were similar to the ChIPS programme in that there were a lot of similarities in issues faced by the parents regardless of the type of the illness that their son or the daughter had. Medically there were differences in terms of treatments needs however on a social and everyday level there are a lot of issues which were similar for the parents. The next slide ahead highlights what some of the issues were that parents identified. The first one – helping their son or daughter come to terms with adolescence and their illness. One parent called it the double whamy, looking at not only having illness but adolescence at the same time as the huge issue. And letting go, that was another one.

Following on from this doing a research from looking at the issues the parents were adamant that they would like some kind of a support group for themselves and having identified some of issues we next looked at the kinds of support groups that were available looking at models of service delivery. And look at whether there were any other groups available or not, not to re-invent the wheel. And what we found is that there were a number of illness specific support groups for parents focusing on things like groups for parents for kids with diabetes or groups for kids with asthma, however there were no non-illness specific groups available and there were none that focus on the issues for parents of adolescents, most were for parents of younger children. And the parents were quite forceful in wanting a group that was for parents of adolescents because they felt that there were a lot of significant issues that were different once they became adolescents than when they were younger. So the next step was to set up a reference committee and the reference committee is made up of seven parents and 2 health professionals. Again it focuses on parents being involved in the groups that we run.

The parents were strongly involved in the planning, facilitation and promotion of the group. And I think it is a very essential part of this process my role and Meridith’s role who is another health professional involved in this project is mainly as facilitating and organising speakers and things for the group. So we set up support group on March of this year and what the objectives of this group that the reference committee came up with were provide opportunities for parents of adolescents with chronic illness to meet and to provide support for one another, to share information and to provide education and adolescent development. And as it came to the group the parents really wanted information about adolescent development, any information about day to day living with an illness. They felt that on a medical side of things they had a lot of information, however on a practical daily living side that was where they were lacking. For the structure of the group: we meet on the first Thursday of each month, its nightly group with new parents able to attend each month, so we’re also having new parents coming along, and parents said that it was important because they needed flexibility with their life things so chaotic it hard to commit to a certain set period of time, so having the flexibility of being able to attend one night and maybe not the next was important. And it’s very much a topic-focused group. And the kinds of topics and things they are interested in include managing health care, looking at working with their kids around complaints and transmitting things like that noting what their role can be in that, looking at pain, stress  management, adolescent development, know what’s normal adolescent development and what’s behaviour just associated with the illness, that’s the common question that we are asked and asked by the parents.

Looking again sibling issues and further education – that’s the huge one and we had 27 parents turn up to our further education night when we focusing on what support available was once their kids sort of reached the end of their higher school education. Just to give you an idea of the demographic of a group: we’re having equal numbers of mothers and fathers attending these groups which sounds quite unusual for support groups and I think a large part of that is because we are providing information. We’re having an average 17 parents coming along, and they are travelling quite a long way out to attend the group. And the majority of them of Anglo-Saxon background and main issue that we are hoping to look at next year looking at whether they made access issues for parents from other cultures. And just to I guess conclude I’d like to read to you some words that one of the parents from our group wrote to me, I said that I was coming along to this and I wanted to get some feedback about her experience of being in this group and I get just to highlight for anyone that’s contemplating of addressing issues for kids wit chronic illness or their parents, involving parents in this process because it is very powerful. She titled it  - “Two storms and a rainbow”:

“For the past 18 years of my life I’ve been like a lone weathering the harsh realities of my daughter’s chronic illness. That has been a tough enough call in itself, but when my daughter turned 12 I began to simultaneously weather yet another storm, the hurricane of adolescence. The tree battered against the bitter winds of frustration, the torrential rains of loss and hopelessness, the fogs of confusion and the thunder and lightening of anger. The elements took their toll, despite the support of family and friends who have they tried could never comprehend the nature of chronic illness. I have been and for as long as  I live I will always be there to care for my four and support my daughter. I love her, however through the years the endless storms have stripped my tree of bark and fruit. I have been a member of the parent support group since its inception. There I have found a place of shelter and refuge. At the parents’ support group the tree became a thriving forest. For me the group is about sharing, caring, growing, learning, and laughing. As I am writing this there’s been an update on the weather: storms will continue but a rainbow will be ever present in the sky. Thanks to the parents’ support group I now have a rainbow in my sky. I hope that one day all parents of chronically ill adolescents will see that rainbow.”

Chairman: The last speaker is Gillian Turner from Northumberland Young People’s Health Project, based in Northumberland. Her presentation is Establishing Young People’s Health Sessions. Thank you.

Establishing Young People’s Health Sessions. Gillian Turner

I am a consultant community paediatrician with a responsibility for teenage health in Northumberland and actually focusing not on the needs of young people with chronic illness unlike everyone else I’ll be talking about establishing generic health services accessible to all young people. But I do hope some of these messages will be relevant for all of us working with young people, they are not exclusive to any young person. I am actually presenting on behalf of particularly the young people that have been involved with the  Northumberland Young People’s Health Project and also Ann McNulty, the project co-ordinator.

I’ll be covering all this so that you can see it. The project as a whole is much bigger than what I am going to talk about today, it’s a two-year funded project to really work with local young people, to involve them in developing the appropriate services and particularly involving them in decision-making, in training and also in research as equal partners. I’d like to start with what the young people actually said, “ We do have problems like everyone else and we do need to be able to use services easily. Service needs to be welcoming otherwise the young people will go away lonely and upset.” It’s a very strong statement.

So why do we need to do something. Firstly, we know that young people have significant health need those with chronic illness and those without. Young people’s health, young people themselves define it very very broadly, There are all kinds of things influence their health not solely physical health or traditional mental health. Young people do access traditional health services, we know that 80 to 90% go to their GP in any one year, lots of young people access casualty. However they don’t go about the things they acknowledge influence their health, they go about more narrowly defined physical health concerns. Young people need both information and services ideally in a combined facility so they go for both at a one stop. Particularly perhaps young people we mostly worry about not accessing services, they are the ones that won’t go to one place for information, one place for services and then be referred on to someone else. They just won’t make that transition.

So on to cover a bit of a research we’ve done with Northumberland young people. To explain the methodology we actually did single gender focus groups to begin with very broadly getting young people to explore issues to do with their health and access to health services and from that we then designed a questionnaire so the questionnaire was not professionally driven. So young people themselves were identifying what influences their health are the kind of thing in the 80s and 90s, the things that we as professionals are getting concerned about particularly drug use physical conditions tend to be much lower down so we do need to take a very holistic view point to meet what young people are saying their needs are. They want information about a wide range of things, these were the top three that came up in the very high 80s and 90s. What do they want from us as health professionals? I think it is relevant to all of us no matter where we are working. Most importantly the ability to respect confidentiality, to be able to listen and not be shocked by what young people say and not to judge young people. Age of the health professional, gender of the health professional was very very low down the list.

From the focus groups four issues, themes arose in terms of what young people need from services. The first one they described as safety and that includes confidentiality as part of safety. The first two quotes are actually from young men, as you can see, “If you are seen going in you are accused of being strange and having problems. You get abused, the rumour is going round”. The last three are from the focus group of the young women, “Wherever you go (and this is a small rural place in Northumberland), wherever you go in this place you’re bound to bump into someone you know”, and that’s particularly true for us in rural community but I would argue that actually in some urban communities there are pockets where young people have the same experience, that in your particular estate everybody knows everybody. Confidentiality has got to be 100%. And confidentiality is the whole point of going because you know it’s confidential and it can’t go into other parts of your life. That was the big fear of the young people we were speaking with that they worry that they go somewhere and it would then spread to their friends, spread to the school, spread to home and they really wanted to be able to separate and say it will not go any further. The other three major things will be: the young people wanted information. They wanted clear information about services, about the young people’s services, but also about other services so that they could then make their own choice about where they wanted to go for the problems that they identified. But also clear information about what is confidentiality, what are the limits of confidentiality and that should be not only be just  talked about verbally but a clear confidentiality statement should be up and visible in every health venue.

They wanted to sense a choice and control and that means choice in who they are going to see but also choice about how the service is delivered. And throughout the process of accessing the service that they continue to feel in control, that they do not feel swept along and out of control. And lastly respect. And here are some quotes about what kind of respect they want, I like the third one that “the professional should be able to have a laugh but not laugh at you” so that’s a very nice description.

So, now on to some practical details about how to go about setting up the young people’s health sessions. Just to give you a flavour of the experience I am talking from over the last two years we’ve established now 10 young people’s health sessions around the rural county of Northumberland and it’s been actually over 5000 visits of young people to these health sessions just over the last year. I am delighted to say half, 51% are male and that was a key achievement moving away from the old sexual health model where it was girls going in for sexual health, it’s very broad, young men are very welcome, it seems to work well. The style is very different from the traditional health settings, and it is shown by the fact that more than 70% consult with friends, we are not talking about one young person going in and seeing the doctor, we are talking usually about pairs of girls coming in to support and having a peer consultation and usually groups of boys, three, four, five, six boys coming in together for support. And that I think is very good for young people, it can be quite threatening for health professionals and we are training around that.

The kind of thing that’s coming up about sexual health is important particularly condoms. So you can see a quarter about physical and emotional health concerns. The age distribution of the young people attending, so model age being 14, we have a high school system in Northumberland, young people aged 13 to 18 and these sessions by request of young people were set very close to high schools, so I am sure that’s why we have distribution that we have.

OK, so the key message that underpinned all our work firstly we have to be accessible to all young people but acknowledge that young people are not the same, they are not a homogenous species, they are all different. We need to involve the young people throughout the process and again quote, young people saying, “the project has to value young people and not exploit them.” That young people themselves have busy lives and there has to be enough in it for them. And then we need to support their involvement, it’s not necessarily easy involving the young people, we have to work at it and I believe that young people deserve payment for their involvement. Young people were very involved in designing our publicity and making it accessible for them particularly developing little cards that had to be white, if they are brightly coloured card then people they reckon would know what it was all about, it has to be a white and discrete card but very much a credit card that flipped into your pocket.  And we have a system of on-going audits, so the young people actually come round the centre and do their audit of the centre and feed back to the staff.

So practical things if people are wanting to set up such sessions. Firstly is to consult with young people before you set up a service. I think a lot of us as health professionals have a wonderful idea and want to do something and  we whiz away and set something up with our enthusiasm and we forget that we actually need to ask young people first, what do they want and then respond to that and really tie back our own professional enthusiasm. Out of our now 10 sessions none of them are in health venue, the young people that we work with say that what venue seems appropriate and all of them are in youth clubs or centres, one of them actually was actually chosen to be on school premises and it really wasn’t appropriate to have them in health venues. Timing - which day, what time of day a large proportion of young people bussed there from school, so it has to be a time when they can preserve their own confidentiality but access a session. And I’ve already mentioned about the advertising. In each place, it would have been very easy for me to have one questionnaire and use it in all the 10 centres, in fact what we did in each place we got the local young people design their own questionnaire, they delivered it and they did the evaluation. And that seem a very important part of the ownership.

I want to highlight the bit about advertising. We work quite hard to get young people to design their own posters and again not one poster county-wide it’s ten different posters for different sessions, ten different credit cards for what they thought the local need was. And I think that worked well. And you can see the vast majority of young people actually heard about the session through word of mouth and that’s what young people trust, they trust what other young people say, that’s place is OK to go to or it’s not. And what’s we’ve learnt is that good news travels really fast among young people, if it was a god service they’ll go because they will tell their friends but also bad news travels fast, you just need one breach of confidentiality or one disrespect for worker and that goes round very quickly too. So we have to set really good standards and stick with it because bad news travels really fast as well.

OK, so next thing is key ingredients for success. All of the key things to do with atmosphere. And it has to be friendly, respectful ,welcoming, non-judgemental atmosphere, has to be relaxed, but also young people say they want a professional service, so we need to get that balance right between being relaxed but professionally trustworthy. We found that youth work involvement was absolutely essential, that health workers are not trained in how to provide a really young person friendly atmosphere, how to get that right. And also youth workers have that outreach facility of bringing in particularly marginalised perhaps young people who are excluded or out of school to bring them into the service. A sexual health doctor or nurse, as I said they need information but also services, all of our sessions have a full prescribing service in condoms, pills, emergency contraception and general health advise as well as other information. But the sexual health doctor doesn’t need to be there for an hour even if you have quite a long session, you don’t need to have a sexual doctor there all the time. We also have a generic health worker who usually has counselling skills. We found that, we developed a sessional document which I will talk about later on, because we found that there is a lot of professional anxiety about working in this kind of areas, particularly with young people of under 16 and to have very clear guidelines about where you stand and how you to go about doing things it’s very important in reassuring professionals and also there ‘s a confidentiality statement that each team developed their own version of a clear confidentiality statement what the limits are and it’s very clearly displayed. There is also rights and responsibilities for both workers and young people that displayed at each session.

I would also take a bit of time on what the issues for workers are. The multi-disciplinary team particularly including youth work does seem essential but what we learnt before the project was that without youth workers it tended not to work certainly in the long term. However, although it’s essential it’s challenging I think there is a different philosophy and a different training from youth workers compared to health workers and to try to bring those two cultures together can be challenging. And it particular brings up issues of power and authority and equality between health worker and youth workers and among health workers but also between adults and young people and this is one of the challenges that we had to work through to make the multi-disciplinary team work well in the long term.

There are feelings ambivalence about offering a full sexual health service to young people particularly young people under 16. And I think that sense of ambivalence must be acknowledged and also needs to be resolved and worked through. Particularly clear information has to be given about the legal framework and also about the information that we’ve heard a lot today about the availability of contraception and information does not increase sexual activity because it is a confident worry that some workers bring to their work. There is professional anxiety that we need to be aware of the feeling, am I doing the right thing, what will happen if. So the solution to those challenges. Firstly it is training that we did multi-disciplinary training very regularly over the two years, and that training yes, provided information, but also provided a space for worker to check things out with each other, particularly  in this multi-disciplinary forum and to share their different approaches. Information was critical as we are dealing with a large rural county so circulated information to all the work of all the multi-disciplinary teams and this seems to be an important part of holding that sense of anxiety about working in a new setting. Protocols and guidelines I’ve mentioned, support happen both in the local teams but also on this county-wide network and finally we developed actually supervision whereby on a by monthly basis we have a group supervision which is externally facilitated and again level of professional anxiety is such that I think it is actually very important and should be considered.

So, finally Northumberland Young People’s Health Project has two publications, I’ve only touched upon a bit of our work today. The first one is our final report. Tomorrow Ann McNulty and some of the young people will be here to present it at “Meet Professor Lunch”, I think is what they are doing, they are not professors neither am I but they will have more copies of this final report which has more details in, it is also available from us if you don’t get a chance to get one tomorrow. The other thing we developed is much more practically based sessional document which is kind if you like the bread and butter of what protocols and guidelines we found useful in assisting worker teams to work in a supported fashion that’s also available.

Chairman. Thank you Gillian Turner, it’s very good and thank you all for covering all these complex and exciting programmes that have been initiated in many places. Thank you very much.