Informal And Formal Use Of Health Care Resources by Adolescents And Young Adults

Jeanine Pommier

I am Jeanine Pommier, I work at the School of Public Health in Nancy, at the faculty of Medicine that’s located in the north-east of France. The research I am going to present today is “Informal and Formal Use Of Health Care Resources by Adolescents and Young Adults”. You’ll see that this presentation in a very methodological presentation and I will try to tell you first how we came to work on this subject. At the School of Public Health we’ve been working on adolescent health for many years and at one point we thought about health services and many studies have shown with what frequency adolescents consult for example we know compared with other age groups adolescents are the ones that consult the less. However we know that they do have health problems. We also know even if they do not consult much that approximately 70% of adolescents have seen a health professional in the last year. We also know that as a mean they consult between 3 and 5 or 6 times a year. We know that girls consult more frequently than boys. We know that between 15 and 20 of them have to the hospital in the last 12 months and I could go on. But in general we know with what frequency they consult.

We also know where they consult. We know that most of them prefer going to the general practitioner, it depends on the age group, I think in the first presentation they showed very well, this morning I meant, Gail and in Gail’s presentation, she showed us that if we compare the different age groups, professionals they consult are different but in general they consult general practitioners, they like to go to a non-family doctor, we also know that they consult when they go to the hospital, they go to specialists, but it also depends on the age group.

We also know for what type of problems they consult. And we also have an idea why they do not consult. But as you can see all the things that we know are related to the institutional health services. And we ask ourselves these adolescents have health problems and they don’t always go to the institutions. So what happens when they have problems and they don’t go to consult to the health professionals. And that’s what we call here for “informal health services”. And what we meant for informal health services was the help they get from parents, the help they get from friends, the help they get from the neighbourhood, in fact other persons and other services that are surrounding the adolescents but are not strictly related to the institutionalised health services. So that’s the reason why we wanted to explore all this part the use of health services.

But we also wanted not to enter this problem from our point of view, we wanted to have a little bit of the adolescents point of view and we wanted to work with them to try and construct a tool that will allow us to investigate all this domain. So how did we proceed? Here the results that I am going to show you later are just a little part of the research project, I’d like to tell you what the whole research project is all about, so you can understand.

We wanted to study this more from a qualitative point of view and from the adolescents point of view because we have many data from the institutions, but we wanted to talk about the adolescents and to have the real experience. The easiest thing we could so was to construct the tool ourselves, we as professionals in our team we have sociologists, we have psychologists, we have some therapists, we have doctors and that’s what we did. We constructed a tool to try to study these things I was telling you about, but we also said, well that’s not the right things, so also worked with 3 groups of adolescents who have worked separately, and they have also constructed a tool to try and find data about the use of formal and informal services. And so from all these 4 tools that we constructed, one with the professionals and three with the adolescents, we are going to do a final data collecting tool and this tool is going to be used by adolescents themselves to find the data among the peers. So that’s in general.

Now I am going to present you a small pre-test that we did from the tool that was constructed for the professionals because unfortunately I only had the results of other tools 3 days ago, the tools that were constructed for the adolescents, but I can tell you some of the things that came out. So the main objective of this small research was to pre-test our data-collecting tool and the objective was to determine under what conditions young people seek formal and informal health care, what type of health care they use, and what factors influence the choice of health care. And the second one was to compare the results of socially and economically disadvantaged young adults with university students.

We did a qualitative study with semi-structured interviews, we studied more or less 25 adolescents, one of them being socially precarious young people, we have 8 girls and 7 boys going from 18 to 25 years old and they were involved in the training course for professional rehabilitation. The second group we studied were the group of 14 university students going from 18 to 22 years of age and these students were interviewed during the compulsory medical visit during the first academic year. We tried to talk to these students before they were seen by the nurse or by the doctor so that we could avoid the influence somehow that they might get after talking to them. And the AFORIS group, the AFORIS is the Association that works with the precarious adolescents. The AFORIS group were seen at where they usually work day to day. And it was really important, we went to see these youngsters first of all to see if they were willing to accept to be interviewed and we also were very careful to tell them that is afterwards they needed to go and see somebody or talk to somebody there was a counsellor who could help them out.

It was fortunate that we did that, because I’ll tell you later what little things that happened during these interviews. We wanted to see everyday behaviour and the impact on their health status, we wanted to see what the health problems were and how they used the health resources as a whole formal and informal; the things they do if somebody close to them is not doing well. Sometimes they have promised to talk about themselves but you tell them, tell us what you will tell your best friend to do they can talk more easily. We also wanted to see what the relationship with doctors was. They quite easily accepted to talk to us, however the average boys and girls that are the precarious adolescents had more difficulties in answering the questions, many times we had to reformulate these questions, ask in this manner and in another because we wanted to really stay with as more open-ended questions as possible so they had some troubles in these questions. And also we saw that talking about health in general, even if the said health was not a worry but was quite a sensitive subject.

When we did these interviews I was expecting a baby and I never thought it would have such an impact but as soon as they saw my big belly, because it was quite big, one of the girls said, no, I don’t want to talk to you. Later on she talked to one of my colleagues this girl had a baby who died just when he was born, they see health services and they knew that we were doctors, somehow they think about these previous experiences and sometimes they are not very willing to talk because they are just very sensitive things and around maternity it was a real problem because from these 15 adolescents we had 4 of them that had problems around this area and to see me pregnant was just impossible for them to deal with. So that was something that really shocked us.

We only had 25 adolescents, so we cannot generalise, here I am going to show you some trends, but as I tell you, it was just a pre-test and with only 25 interviews I think we still cannot really draw definite conclusions, but at least it gives us an approach and that’s what we were seeking. For example, when they were asked what they would do if they had a health problem. University girls in general answered they wait to see if the problem goes away, that’s the first thing they do. And almost simultaneously they talk to mothers, that’s very important because you’ll see that university boys also wait but when they talk to their parents they talk to parents, that’s mum and dad, but girls always said, we prefer to talk to mothers. That was a big difference. And sometimes both university boys and girls talk to friends or boyfriends and girlfriends, but almost all of them systematically talk to their parents and it’s interesting to know that these adolescents do not live with their parents anymore because they are living in Nancy, they are going to the university and most of them have their family who live elsewhere. But they call their parents and they go and see them when they have a health problem. For the girls they usually wait for a family decision to decide what to do. And they also talk very much about family solution. While boys also waited a bit for a family decision, but they never mentioned a family solution.

And for the AFORIS group, that is more deprived adolescents, the girls said that they usually waited and postponed when they first had a health problem but they also self-medicate, and they do not talk to family and very very few of them talk to friends. They only consult when they think it was a serious problem, so we also had to explore what seriousness was for them, it was high fever for example, almost all of them mentioned high fever as a symptom of seriousness, cough and aches. And it was also interesting to see sometimes when they consulted they consulted directly to the hospital, thing that we have not seen with university students. And for the boys, I couldn’t find some tendencies for these boys, because on the extreme we had boys that said that they systematically consult, but I think that was almost a pathologic case, on the other side we had boys that totally rejected the use of formal health services except the hospital in extreme cases. We also had some boys that said they use the internal force and self-suggestion to try and fight against the problem and there was also self-medication and then eventually use of the hospital services.

A big difference between the university and the AFORIS group were the use of the hospitals, they go more easily directly to the hospitals than to general health services and we see that in the AFORIS group also there was more self-medication than in the other group and also that they hardly ever speak to family and friends, and that is very interesting because when we asked them what were the things you’d like to do this AFORIS group always mentioned that they like to be with friends, they like to be surrounded, they like to go out with the friends, however when they have problems, they not very often speak to them. I have to say that the differences are also related to the type of problem because some adolescents could tell us in general their behaviour but some of them told us it very much depends on the health problem.

When we asked some what they did if someone had a health problem in general most of them answered that they’d like to talk to this person and listen to this person. It’s important to cheer them up, to find out what the problem is and eventually tell hem to go to a doctor. But in all four group the first thing  that comes out is that it’s important to talk and another interesting thing that came out also was in the AFORIS girl, there were two of them that had said that when somebody had a problem they always told them to go to a doctor and they were quite pushy about it and they went with them to the  doctor. It was interesting to see also in the interviews what the real behaviour was, they said that they were really afraid to go to the doctor and when they could wait and postpone they did it as much as possible.

Here was the positive point and the negative point for using informal health resources. For example, they said that they use informal health resources that is social support because they can help them decide what to do. They have somebody to talk to, they give them support, they give them medication, they have the experience, they are always there and they are older than them. And the reasons why they wouldn’t go to these informal health services that is family, friends, surroundings is that sometimes they don’t see the problem, that they don’t care, they mentioned the lack of confidentiality, and that they wouldn’t understand.

They very much talked about the relationship to doctors. And we could see that of the positive comments in relation to formal health services were oriented to the family doctors, they very much appreciated the family doctor. Seven of them preferred the family doctors when they go to see somebody in the health services they like to go the family doctor, somebody they have known for a long time. Why? Because they already know them, they can talk to them, they trust them, they take time, they try to listen, they are serious and they ask questions.

Some of the reasons why they don’t consult. They don’t feel at ease with doctors, because sometimes they don’t explain things, they are too cold and distant, they give injections, they don’t consider people as human beings, they don’t allow consultations with somebody else, that’s interesting to see because some of them wanted to go with their friends, and they do not trust male doctors. There was a girl who said that. Still, why they don’t consult in relation to services, because sometimes opening hours are not compatible with their hours, they need to make appointments and cannot be received right away, they stay in waiting rooms for too long, visits are too short, they don’t have time, they have immediate needs which are very important for them. There is also financial matter and the complexity of administrative papers.

Other reasons why they don’t consult. Because they are scared to find out what they have or that it might be a serious problem. Sometimes they think there is no solution for their problem, some of them said it was related to cultural, educational background, and they gave some examples there, if the previous treatment didn’t work and they didn’t like to consult formal services usually for emotional, psychological problems, stress and tiredness. They said their doctors were not trained for that and that they wouldn’t understand that type of problem.

So what did we learn from this pre-test. So about the tool: that the methodology was appropriate for this type of question, that AFORIS group found it more difficult in answering the questions, and we also found that there were some things we could correct in our tool, for example, that we have to sometimes go and explore other resources that sometimes don’t come to mind spontaneously. Maybe it’s important to explore a bit more about the type of support they look for and received in the informal sectors. When they go to talk to parents and they go to talk to friends what are they expecting to receive from these parents and these friends, I think there we need to work some more to explore that area. We also need to work on how health was dealt with in the family, in the surroundings when they were children. And this came out spontaneously from them, that some of them said that acted today because they saw some things when they were young and I think maybe it is interesting to see what the representations they have of use of health resources when they were small.

We should explore a bit more about the sex of the practitioner, there are some studies that exist already in that field but maybe we should ask a bit more about those questions. It was interesting to explore more about the perception of the seriousness of the problem because apparently that’s also a key point. Another thing that we can work on is when there is a decision to consult maybe we should go and see more closely for example for the university students we saw that the family really helped them in the decision but in this decision to consult we have to know more who decides when and how this decision is taken because I think all these points can be really useful for health services, not only for health services but for health promotion in general because if we don’t know what they expect from health services, how they leave health services we cannot give them an answer that is appropriate to them and also maybe in terms of health promotion if we see that family peers and surroundings how they are used, maybe we can work and give more support to family and peers so they can deal with the problems of adolescents around them.  Just 2 days ago I saw the tool that was constructed by the adolescents, and it was interesting to see, they were quite similar, I was surprised to see many many similarities, but their questions, they talked very much about how help was dealt with in the family and when they were little, that was one thing that was quite present in the adolescents’ questionnaire.

Transition From Paediatric To Adult Care. Marcelle de Sousa.

I am a nurse working with Russell Viner to set up an adolescent unit at the Middlesex in London which will have the first dedicated adolescent health service, so we are many years behind North America and Australia but we finally arrived with the help of an Australian.

Robert Blum in 1993 talking for SAM I guess said that transition is a purposeful planned movement of adolescents and young adults with chronic physical and medical conditions from child centred to adult oriented care system. This paper is about how you don’t do that. I did this work while working in a large paediatric renal unit here in London. It was a regional unit and it was only one of three at the time in the UK. And because of that we had a large population. We used to transfer approximately 20 teenagers a year into adult system without any preparation whatsoever. And when I said there was no adolescent facility I meant there was no member of staff who bothered to acknowledge the needs of these adolescents. What were the reasons for transfer. Usually it was the end of secondary education and it meant that this teenager, this young person might be moving to university or college away from the unit. And so a letter would be hastily dictated by the consultant, it will be a phone call to the next clinic and the next visit will be to the adult unit.

The second reason is actually more entertaining, it was what one of our paediatricians called when they reached adult status. This basically meant if they asked for advice about contraception, if they arrived at the clinic with a partner, if they arrived at the clinic pregnant, this is a paediatric clinic, or as one girl did so beautifully arrived with a picture of herself on page 3 of a popular tabloid in this country with very little clothes on and then one saw they weren’t right in the paediatric clinic. So what happened, the play leader or activities co-ordinators as they like to be called when dealing with teenagers or they heard a group of teenagers discussing how unhappy they were about going to adult unit, the two of us began accosting, it is the only word I can think of, teenagers while attached to dialysis machine so they couldn’t escape from us, accosting them in the corridors of clinics where they are sort of going out to have a quick cigarette to ask them what they felt about being transferred to adult units. And they all said that they wanted preparation. And so we set about having a meeting, and we invited these people along, don’t forget these are all part of a multi-disciplinary team, but we had to invite them to come and talk to the teenagers.

The nurses from the various areas were invited. One of the nephrologists came along, the psychologists gave us her backing, the play leader, the pharmacists and a social worker. And from these meetings, I believe the term is not politically correct these days, we brainstormed with these teenagers, and we held several meetings. We had about 10 meetings and out of those 10 meeting we came out with a list of suggestions for preparation. One of the things they wanted was a year’s notice, they wanted to be told that next year they would be going to an adult unit. They wanted to be able to visit the adult unit before they actually became a patient. They wanted sessions with the pharmacist, now this is very interesting because it reflects two of the earlier speakers, none of these teenagers knew how to register with the GP, they didn’t know how to take their prescription to a chemists, they didn’t know which chemist would provide which drug, because their parents have always done it for them.

They wanted sessions with a social worker, the social maze in this country is absolutely appalling, the forms and the bureaucracy, leave alone an adult trying to fill them a teenager moving away from home and from us would not know how to deal with it. They wanted time to discuss the future, and the reason they say children member of staff, it wasn’t just with a psychologist or the social worker, they wanted actually to talk to the doctor or the nurse they formed a relationship with. And the next one is interesting, they wanted us to tell their parents about the next suggestions, about attending clinic on their own. They couldn’t tell their parents that they wanted us to tell them, that this was part of their preparations going to the adult unit. They wanted a map of the adult unit, here in the UK many of the adult renal units are part of large district hospitals and it’s quite a nightmare trying to find your way around it. So it was a very practical and good thing to do. And they wanted contact with a nurse prior to their transfer. They wanted a copy of their discharge summary, this upset all our paediatric consultants. Because they were many things that they would put into it, they knew their adult colleagues and so they’d said, this little sod never takes his tablets and they couldn’t put that. And we had a lot of fun editing these discharge summaries that went with the teenager to their unit. They wanted ability to keep in touch with what they called the parent unit. They wanted to be able to phone the nurses or doctors just for a little while, I think as a point of reassurance.

Doctor Suris pointed out that many of these adolescents are not confident, they are unable to face doctors or any other person of the team on their own and they wanted to be able to know how to ask questions, what sort of questions to ask. As part of this preparation, and I never know whether it’s a good thing or a bad thing, we brought back some teenagers who’d already transferred to adult units without preparation, and they really upset everyone. And these were the sort of things that they came out with: the nurses didn’t know me, I was just another patient, not a real person with feelings. Because often in the paediatric clinic they all knew the nurses and doctors by names and they knew the patient. But in a large adult clinic they didn’t know them. It was silent in the adult unit, they were old and asleep, will this be me in the future, this was frightening. And this came from a young man who transferred while on chemo-dialysis to an adult unit. And that is the sort of picture that they went to. Coming from a paediatric unit where the teenagers were often dialysed together in the afternoon after school with lots of music, lots of activity going on this really was not a very pleasant prospect.

Why bother going to the clinic where a doctor doesn’t look, listen to talk to you? I don’t know my results from visit to visit. Some teenagers who were told what their creatinine results were in the paediatric clinic each time, which is the way of checking on compliance, they went to the adult clinic and no one ever bothered to tell them. They’d no idea what was going on. And that was just a picture to show you of an adult ward the teenagers went from a nice paediatric ward to things like that.

We didn’t leave parents out of it. We decided we had to talk to parent as well as to what they felt about transferring to an adult unit. And this is what one mother said, “ I will never get over the loss, I can’t tell you how isolated we all feel”. And that was because they felt they weren’t made welcome in the adult unit where they were transferred to. And because of that we actually had a parents’ evening as part of our preparation, where we sat and spoke to parent. We brought in adult physicians, adult nurses to come and talk to them and make them feel that they would be welcome in adult units, they just had to take a back seat role, that was all.

To summarise. All these views went out into practice. We prepared a programme. The pharmacist, the social worker, the psychologist all gave their time and we really made an effort to prepare an ex-batch of teenagers that went away from us. We had very successful parent evenings. The Parents actually were quite relived to be away from their teenagers which is quite surprising, they had a chance to voice their fears, but to also say, I am really glad, I am tired of looking after them, I am tired of ordering their drugs, I am tired of being a watchdog going and collecting their drugs, I am tired of washing their clothes and cooking for them, can’t you teach them that as well. So, I have now left that unit, I never had time to evaluate it and go back to the teenagers who we prepared to ask them whether it was a good thing or a bad thing, but perhaps someone will continue the work and we’ll find out at another conference. Thanks.

Chairman. Here is the summary of transition in ten minutes. Very good. Well done. Questions.

Question - re. Parents

Answer - One of the things that happened and it just really irritated me is you’d have a teenager and a parent in a clinic and you’d ask the teenager the question and a parent would answer they never gave them a chance and it was interesting I thought that the teenagers didn’t want to tell their parents themselves, don’t come to clinic, let me go on my own, but wanted us to do as I call the dirty work, but we were very happy to do it.

Question - Cut off point re age?

Answer: No, that’s also interesting, no, it is very much the end of secondary education, but when we told our teenagers that by the time they done their O-levels or A-levels and they’ve got their results which is usually in the summer they would then be moving on. We had a girl who was 22 and still was sitting for 1 A-level in English, because she really didn’t want to go. But that is the cut-off point, really, end of secondary education.