Health information and teenagers in residential care A qualitative study to identify young people's views

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Health information and teenagers in
                          residential care A qualitative study to identify
                          young people’s views
                                                                        Study setting and sample
  Annabelle Bundle presents the results of a quali-
                                                                        The study was carried out between
  tative study, undertaken in a mixed residential                       August and November 1998 in a mixed
  children’s home, which aimed to identify what looked                  residential children’s home for young
  after young people see as important in terms of                       people aged 12–16+ years, with a school
  health information. The young people wanted inform-                   on site. Situated in the north of England,
  ation particularly on mental health issues, keeping fit,              the home has 32 beds, eight being in a
                                                                        secure setting. It is a national facility,
  substance use and sexual health. Many were reluct-                    suitable for those with previous place-
  ant to request appointments for personal matters                      ment breakdown and school failure.
  and did not feel they were encouraged to ask about                    Forty-six young people were resident at
  personal health concerns during medical examinations.                 some time during the study period. Ten
                                                                        were admitted on emergency placements
                                                                        and were excluded from the study. Of the
                                                                        remaining 36, the age range was 13–16
Annabelle Bundle is       Introduction                                  years, with more males at the younger
Associate Specialist      A school-based survey in 1997 found that      and more females at the older end of the
Community                 most young people preferred to share          age range. All were white. Eight had
Paediatrician,
Central Cheshire
                          health worries with their mother (Balding,    experienced multiple episodes in care.
Primary Care Trust,       1998). Because breakdown of family            The mean number of placements per child
Winsford, Cheshire        relationships is a contributory factor to     was six. The mean length of time being
                          residential placement for many teenagers,     looked after was 30.9 months. Thirty-
Key words:
                          those in residential care may not be able     three residents attended the on-site school
teenagers, looked after
children, residential     to share health concerns with a parent.       and three attended other schools. Seven-
care, public care,        Education and behaviour problems are          teen had a statement of special educa-
health information        common in looked after children and           tional needs (60 per cent for emotional/
                          there is a high rate of psychiatric illness   behavioural disorders and 20 per cent for
                          in adolescents in care (Halfon et al, 1995;   moderate learning difficulties).
                          McCann et al, 1996; Mather et al, 1997;
                          Broad, 1999). Many looked after children      Methods
                          have poor school attendance and school        A list of questions to be covered in the
                          refusal (Berridge and Brodie, 1998;           interviews was compiled by the author and
                          Sinclair and Gibbs, 1998). Consequently,      discussed with her supervisor. As a pilot,
                          they may miss out on health education.        semi-structured interviews were carried
                          Concerns about headaches, acne, diet,         out with a 15-year-old boy and a 14-year-
                          sexual health, drugs and mental health        old girl attending mainstream secondary
                          have been identified in studies of looked     schools and not in public care. Transcripts
                          after young people, with written informa-     of the interviews were reviewed by the
                          tion wanted by those in residential care      author and her supervisor to identify bias
                          (Coutts and Polnay, 1997; Mason, 1997).       and any additional questions to be asked in
                          However, published reports often lack         the study interviews.
                          details of methodology or involve very            Following the two pilot interviews and
                          small numbers of young people (Mapp,          an additional discussion with two other
                          1996; McGuire and Corlyon, 1997;              young people (not in public care) about
                          Landon, 1998). This research sought to        the variety of issues that could be in-
                          clarify what a specific group of teenagers    cluded under the heading ‘health’, it was
                          in residential care see as important in the   felt that a ‘Health Information Topics’ list
                          area of health information.                   would be helpful when introducing the
                                                                        research to the residents at the children’s
                                                               ADOPTION & FOSTERING VOLUME 26 NUMBER 4 2002      19
home. The list contained 25 suggestions        past and for most there was more than
                     and each resident was asked to choose up       one: nine had received information from
                     to ten topics they wanted information          school, seven from parents, six from care
                     about. They were not asked to put these in     staff and five from a doctor. Five also
                     order of priority, nor were they asked to      looked for information in magazines.
                     indicate if they had previously received       Information from doctors was not always
                     information on these topics. They could        well understood and the comprehensi-
                     add further topics if they wished. The         bility of written information depended on
                     Health Information Topics list was com-        how it was phrased. When asked where
                     pleted prior to semi-structured interviews.    they would go to find out about a particu-
                     Some chose to complete it on their own,        lar health issue, ten said a doctor, five a
                     others preferred to do it after discussion     clinic, five a member of the care staff,
                     with the author.                               three a teacher and three a library. Only
                         Consent to interview was obtained          three said they would ask a parent, but
                     from the young person and, where appro-        one of these said her mother was the
                     priate, a person with parental responsi-       person she would talk to if it was a per-
                     bility. Interviews were conducted privately,   sonal problem. Accessibility of informa-
                     recorded on audio-tape with the young          tion was a concern. Telephoning a parent
                     person’s consent and transcribed as soon       was a possibility, but the majority needed
                     as possible afterwards. Assurance was          permission to go off site. For personal
                     given that data would be anonymised.           issues, having to ask permission to make
                         Frequency data were produced from          an appointment and leave the site was a
                     the Health Information Topics list. In-        problem.
                     formation from interviews was analysed             Three felt that some health informa-
                     by identifying themes and categories,          tion already received had not been re-
                     collating responses to each question and       quired. For one, repetition of information
                     coding the information (Burnard, 1998).        at different schools was unwelcome;
                     Audio-tapes were also reviewed by the          another felt he already knew most of the
                     author. Quotes from the young people           sex education he had received. Seven felt
                     have been included to illustrate themes.       that some information should have been
                                                                    given at a different age, or updated as
                     The study participants                         they became older. For girls this applied
                     Eight males and three females aged 13–         to sex education, contraception, sexually
                     14 years, and four males and seven             transmitted infections and pregnancy.
                     females aged 15–16 years completed the         This was also mentioned by one boy. A
                     Health Information Topics list. This           15-year-old girl felt strongly about sex-
                     reflected the age and sex distribution of      ually transmitted infections, that:
                     the residents.
                         In total, 18 young people were inter-      children should be told as soon as they
                     viewed. Eight males and one female were        are old enough to understand about it, at
                     aged 13–14 years, and three males and six      their level of maturity. They should be
                     females were aged 15–16. Four who              told straight away.
                     completed the Health Information Topic
                     list declined interview.                       Drugs were mentioned by a 16-year-old
                                                                    girl as an issue which should be covered at
                     Results                                        a younger age than 11 or 12, and two boys
                                                                    wanted information about smoking at age
                     Health information                             10–12. Twelve said previous information
                     Preferred topics for health information in     had influenced some aspect of their
                     the two age bands, identified by the           behaviour. Of these, seven had tried to stop
                     Health Information Topics list, are given      smoking or decided not to start; five had
                     in Table 1.                                    become aware of the importance of safe
                        The semi-structured interviews showed       sex; one had learned not to be lazy.
                     that the young people had obtained in-         However, despite previous information,
                     formation from a variety of sources in the     two said they would continue to smoke and
20   ADOPTION & FOSTERING VOLUME 26 NUMBER 4 2002
Table 1
Health Information Topics list: choice of health information topics in order of frequency*
Topic                       % who selected                 No. in age group 13–14              No. in age group 15–16
                            each topic                     who selected each topic             who selected each topic
Stress                           64                                   6                                    8
Keeping fit                      64                                   7                                    7
Drugs                            59                                   8                                    5
Alcohol                          59                                   8                                    5
Smoking                          59                                   8                                    5
Sex education                    54                                   9                                    3
Family planning                  45                                   4                                    6
Healthy eating                   45                                   6                                    4
Sexually transmitted diseases    41                                   4                                    5
Acne                             41                                   4                                    5
Staying healthy                  41                                   5                                    4
Depression                       35                                   5                                    3
Asthma                           32                                   2                                    5
Eating disorders                 27                                   1                                    5
Child development                27                                   4                                    2
Sports injuries                  27                                   4                                    2
Bullying                         23                                   2                                    3
Personal safety                  23                                   2                                    3
Personal hygiene                 23                                   2                                    3
Eczema                           23                                   1                                    4
Puberty                          18                                   3                                    1
Sun protection                   14                                   0                                    3
Epilepsy                          9                                   1                                    1
Diabetes                          5                                   0                                    1
Immunisations                     5                                   0                                    1

                         one said he would continue to use drugs.             Two stressed the importance of health
                         Two (14-year-old males) said they would              information being available to all
                         only learn by their own experiences.                 residents. Five only wanted to receive
                            Written information about health                  health information verbally. Some felt
                         issues was wanted by 13, with the option             information on computer might be useful,
                         of discussing it before or afterwards. The           and a 14-year-old male said computer
                         opportunity to take it away to read them-            games on bullying and hygiene would be
                         selves was important:                                more interesting to teenagers. However,
                                                                              there was uncertainty about access to a
                         I like to have something given me to read,           computer in the home.
                         ‘cause I can sit in my room and read it.                The young people were asked whether

                         *Additional topics, each identified by a different person, were: first aid, respect for old people,
                         living accommodation after leaving care, cystitis, anaemia and where teenagers can get help with
                         health issues.

                                                                   ADOPTION & FOSTERING VOLUME 26 NUMBER 4 2002                21
health information would be more accept-       bullying as well, but kids could not know
                     able to them if teenagers helped write it.     what’s happening.
                     Their views varied. Eight felt this would
                     be a good idea, although seven of these        She felt this was an issue the young people
                     felt such information should be checked        in the home knew about, but that should be
                     for accuracy by a professional. One said:      available to children in all schools.

                     I would like it to be in my own words. You     Their own health
                     get things at the doctors all in medical       Twelve of those interviewed had some
                     jargon and you just don’t understand it.       concern about their present health.
                                                                    Several talked about missed immunisa-
                     In contrast, eight felt it was better for      tions, particularly BCG. Other concerns
                     information to be written by older people.     included sexually transmitted infections,
                     One 15-year-old girl said:                     asthma, anorexia nervosa, acne, puberty
                                                                    and general fitness. Although many were
                     I’d probably tend to read it more if I knew    not interested in their past health, one
                     it was somebody a bit older who’d done it,     talked about his ‘lifeline’. This contained
                     because I still go by the, you know, the       information he had asked for about such
                     older the wiser sort of motto.                 things as which day of the week he was
                                                                    born and when he had been in hospital.
                     One preferred a mixture of writers, dep-           When asked about previous medical
                     ending on the seriousness of the issue,        consultations, either with the general
                     and two felt they could put information        practitioner (GP) or when attending for
                     together themselves, with the help of          their statutory annual medical examina-
                     someone who knew about the subject.            tion, only six felt they had been useful,
                     Most of the young people therefore wanted      and only three of these felt they had been
                     information they could understand and          given encouragement or opportunity to
                     which came from a respected source.            ask about their own health concerns. For
                         When asked if it would be useful to        most, arranging an appointment to see the
                     have telephone helpline numbers, eight         GP would be done by a member of the
                     felt they either would not use helplines or    care staff. One 16-year-old said she could
                     their previous experience was unfavour-        make her own appointment, but would
                     able. They represented both sexes and all      need permission to be off site. Six did not
                     ages. One preferred to talk to someone         feel comfortable seeing the GP and
                     face to face. However, ten said helpline       several said that when they had to see a
                     numbers would be useful. The importance        doctor they would prefer seeing the same
                     of Freephone numbers was stressed by           one each time. For one, the staff member
                     three, and another said numbers should         who accompanied her to the appointment
                     be available to all residents, not just kept   was important, as was having a choice of
                     in a central place. Specific rather than       whether this person would remain outside
                     general helplines were mentioned by            the consulting room:
                     several:
                                                                    It would depend on if the staff were sitting
                     It needs to be someone who knows exactly       in, because if it was someone I didn’t know
                     what you’re talking about, for the answers     well and I was told, right you can come
                     you need.                                      and talk to the doctor about your eating,
                                                                    but . . . was coming in, I wouldn’t talk in
                     All those interviewed were given the           front of her. But if I was told a member of
                     opportunity to raise any additional health     staff was sitting outside the door or if I
                     information needs. One girl talked about       was told I’d have a member of staff I felt
                     information on abuse:                          comfortable with, it wouldn’t be a problem.

                     I think we should have leaflets on abuse       Confidentiality was not asked as a
                     and things like that, or people going into     specific question, but was raised by four
                     schools and talking. It comes under            people as being important, and implied by
22   ADOPTION & FOSTERING VOLUME 26 NUMBER 4 2002
a further four who said they would not        in residential children’s homes. Acne and
tell staff the reason for wanting an          puberty were identified in both the Health
appointment if the matter was personal.       Information Topics list and the interviews
                                              as being of concern to several male resi-
Discussion                                    dents. Looked after children often have
The Department of Health consultation         poor school attendance, so they are likely
document, Promoting Health for Looked         to miss personal, social and health
After Children (1999), includes health        education lessons when these issues
promotion as one of the key areas of          would have been discussed.
healthcare planning for looked after              Sex education was wanted by more of
children. A National Children’s Bureau        the younger age group, while family
report on health promotion and looked         planning and sexually transmitted infec-
after children (McGuire and Corlyon,          tions were of interest to more of the older
1997) stresses the importance of viewing      group. It is likely that this reflects their
health promotion as more than simply          own experiences. Giving such informa-
giving information to individuals, rather     tion at an early age was stressed by one
it should focus on ‘the creation or           young woman, though she recognised that
improvement of structures that can pro-       this would need to be tailored to the
vide help and support to young people         maturity of the individuals.
and those who care for them’ (p 3).               Although Broad (1999) found specific
    This study could be criticised for        health information about smoking and
concentrating on health information, but      drinking was wanted by care leavers, in
the latter is an essential step in planning   this study information about substance
health promotion intervention (Warwick        use of all kinds was of more interest to
et al, 1998). Discussion of the Health        the younger age group. Interventions
Information Topics list with some of the      aimed at reducing the likelihood of
young people, prior to them completing        younger residents starting to misuse sub-
it, could have introduced bias into their     stances should be considered, while
responses, but they were encouraged to        taking account of circumstances that
give their own views. Knowledge of their      affect drug use (Health Education
views assists in planning appropriate         Authority, 1997).
provision, and the experiences of service         There was a variety of views about the
users should inform the process of pro-       format of future information. Written
viding services to children in need           information was preferred by 72 per cent
(Mather et al, 1997; Warwick et al, 1998;     of those interviewed, although some also
Department of Health, 2000).                  wanted an opportunity to discuss it. When
    Mental health issues are of concern to    discussing the Health Information Topics
young people in residential care (Mason,      list, two young people stressed the
1997; Mather et al, 1997). This study         importance of information being available
found that 64 per cent wanted information     to every resident, not simply displayed in
about stress and 36 per cent information      a central place. Any written information
about depression. Eating disorders were       needs to be accessible, accurate and
also of concern. The study was not            appropriate in content, style and reading
designed to diagnose mental health pro-       age. Involving young people in compiling
blems, but the extent of concerns raised      information could be considered, as this
by the young people themselves high-          may improve both their understanding
lights their need for access to emotional     and motivation to use it. The use of
support and, where necessary, specialist      information technology was mentioned by
mental health services, as recommended        some and should be explored, though
in the draft National Healthy Care            access to a computer and privacy when
Standard (National Children’s Bureau,         using it may be difficult in a residential
2002).                                        home, as they might with telephone
    Information about keeping fit was         helplines.
wanted by 64 per cent and opportunities           Although many of the young people
for physical activity should be available     expressed little interest in their previous
                                     ADOPTION & FOSTERING VOLUME 26 NUMBER 4 2002      23
health, this information may become           1999). In the area in which the study
                     more important to them as they get older.     home is situated, mainstream secondary
                     A health record which is retained by the      schools have regular school nurse ‘drop-
                     young person has been advocated (Butler       in’ clinics, in addition to health inter-
                     and Payne, 1997; Irving et al, 1997).         views offered to all Year 7 pupils. The use
                     Such a record could contain the               of a school nurse to provide a similar
                     information that one resident had asked       service in residential children’s homes
                     for in his ‘lifeline’.                        would give these young people easier
                         Social workers and carers may discour-    access to a knowledgeable health profess-
                     age teenagers from attending the statutory    ional, with an opportunity to talk confi-
                     annual medical examination (Irving et al,     dentially about their own health concerns
                     1997). Physical examination may not be        and to discuss any written health informa-
                     the best way to assess the health of teen-    tion they receive. The nurse could facili-
                     agers. Mental and emotional well-being,       tate referrals where required and also
                     health promotion and gaps in the uptake       address such issues as incomplete
                     of child health promotion should also be      immunisations.
                     addressed (Polnay et al, 1996; Butler and         The young people in this study may
                     Payne, 1997; Irving et al, 1997; Mather et    have needs that are different from those in
                     al, 1997). However, where physical exam-      foster care or smaller residential units.
                     ination is indicated, providing a choice of   Those in foster placements may have less
                     doctor and continuity when further            restriction on their movements, facilita-
                     appointments are required, is important.      ting confidential access to telephones and
                     This would help address the concern           healthcare services. The lack of a trusted
                     raised by some young people of wishing        adult has been identified by young people
                     to see the same doctor each time. Those       in public care (Mather et al, 1997). There
                     interviewed had found a lack of encour-       may be greater opportunities to build a
                     agement to raise their own health con-        trusting relationship with a long-term
                     cerns at medical examinations. This must      foster carer, with whom they can share
                     be taken seriously as 67 per cent had         health concerns. However, foster carers
                     concerns about their current health.          may be unsure of their responsibilities in
                     Therefore, any consultation with a health     respect of health promotion and young
                     professional should be combined with an       people in their care (McGuire and
                     opportunity for teenagers to talk about       Corlyon, 1997). Smaller residential units
                     their own concerns.                           may also facilitate the development of
                         McGuire and Corlyon (1997) identi-        such a relationship of trust, but a high
                     fied the need for: ‘an adult from outside     turnover of residents may make this
                     the young person’s immediate environ-         difficult (Polnay et al, 1996; Sinclair and
                     ment from whom they can obtain inform-        Gibbs, 1998). Minimising the number of
                     ation on such subjects as sex and drugs       placement changes is crucial for all
                     and with whom they can share personal         children in public care.
                     details if they so wish’ (p 74).
                         In this study, more than a quarter of     Implications for practice
                     those interviewed saw clinics as a source     Teenagers in residential care are a part-
                     of information. Promoting Health for          icularly disadvantaged group, frequently
                     Looked After Children (Department of          having unmet health needs and poor
                     Health, 1999) emphasises the importance       educational attainments. It is important
                     of looked after young people having ‘the      that they are not disadvantaged further by
                     opportunity to enjoy a standard of care as    lack of provision of services available to
                     good as all children of the same age          teenagers in mainstream secondary
                     living in the same area’ (p 3). School        schools. Although provision of health
                     nurses have a key role in meeting the         information is only part of the wider
                     health needs of school-age children and       scope of health promotion, providing
                     some issues may be addressed more             information in a format acceptable to
                     appropriately by nurses (British Paediatric   them, covering issues which they have
                     Association, 1995; Department of Health,      identified as areas of concern, is import-
24   ADOPTION & FOSTERING VOLUME 26 NUMBER 4 2002
ant. If this is combined with opportunities        planning, assessment and monitoring,
to talk to a health professional, such as          Consultation document, London: DH, 1999
occurs at school nurse drop-in clinics, it         Department of Health, Department for
could help reinforce the message and               Education and Employment, Home Office,
increase its effectiveness. Whether this           Framework for the Assessment of Children in
would lead to improvement in the health            Need and their Families, London: The
of the residents will need to be moni-             Stationery Office, 2000
tored. All health professionals who have           Halfon N, Mendonca A and Berkowitz P,
contact with young people should give              ‘Health status of children in foster care’, Arch
them encouragement and opportunity to              Pediatr Adolesc Med 149, pp 386–92, 1995
talk about their own health concerns, and          Health Education Authority, ‘Health promotion
maximise the health promotion oppor-               in young people for the prevention of substance
tunities such contacts provide.                    misuse’, Health Promotion Effectiveness
                                                   Reviews, Summary Bulletin 5, 1997
Acknowledgements
                                                   Irving M, Evans S and Watson L, ‘British
This research was undertaken for the               Agencies for Adoption and Fostering in
MMedSc in Child Health at the Univer-              Scotland: Scottish medical advisers’ survey’,
sity of Leeds. I am grateful to Dr S Wyatt         Public Health 111, pp 225–29, 1997
and Dr M Rudolf for their advice and
                                                   Landon J, ‘Children in care: responding to their
support; also to the Community Liaison
                                                   health education needs’, Healthlines, March,
Officer, young people and staff at the             pp 12–14, 1998
home.
                                                   McCann J, James A, Wilson S and Dunn G,
                                                   ‘Prevalence of psychiatric disorders in young
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                                          ADOPTION & FOSTERING VOLUME 26 NUMBER 4 2002                25
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