Turbulent Times Living with Diabetes An Adolescent Perspective

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Turbulent Times Living with Diabetes An
Adolescent Perspective

• Helen Burke

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Aim of the Study

• The aim of this study was to provide insight into
  issues viewed important adolescents with diabetes
  through a study of their lived experience

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Background

• Adolescence is a notoriously difficult age
  for those with diabetes. Issues such as asserting
  autonomy, of defining their place in the social
  environment coupled with a changing body image
  can take on particular importance as they adjust
  to taking fuller responsibility for caring for
  their diabetes. Diabetes in adolescence is often
  characterised by poor diabetes control. This poor
  glycaemic control presents diabetes care teams
  with particular challenges regarding potentially
  life threatening episodes such as diabetic
  ketoacidosis and hypoglycaemia and challenges in
  how to prevent the chronic complications of
  diabetes, associated with this group.

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• Type 1 diabetes most common metabolic disease of
  childhood in US (Grey et al 1991) affecting 1 in
  400 children.
• Type 1 diabetes affects 1 in 550 children in the
  U.K
• More common in Finland among children
  adolescents than any other country (Kyngas
  Hentinen 1995).
• The total number of children availing of
  paediatric diabetes services in Ireland in 2001
  was 1445, which had risen to 2224 in 2003.
• 55 rise in usage of Paediatric services within a
  two year frame (Diabetes Federation of Ireland
  2003).
• The increase in the incidence is expected to
  continue at a rate of 3-5 per annum. This will
  result in 2,750 children requiring paediatric
  services by 2010.

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Glycaemic control

• Glycosylated Haemoglobin (HBA1c) levels may be
  higher during adolescence..
• Partly attributed to emotional upheavals, risk
  taking and poor compliance
• Also attributed to growth and hormonal changes in
  puberty.
• HBA1c as a outcome measure used by many to
  uncover reasons for non-compliance and
  non-adherence to treatment regimens (Kyngas
  Hentinen 1995, Coates Boore, 1998, Kyngas 1999)

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Study methodology Descriptive phenomenology

• Study guided by philosophy of Husserl (1859-1935)
• An empirical philosophy (Owen 1994)
• Aim of phenomenology is to arrive at an essential
  understanding of human consciousness experience
  (Valle et al 1989)
• Reflexivity for study aimed at sustaining
  objectivity (Dowling 2005)
• Use of reflective diary (Koch Harrington 1998)

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Study Methodology

• Ethical considerations sample from another
  hospital in Western HSE area chosen
• Parental consent
• Ethical approval
• Data collection Unstructured interviews (tape
  recorded)
• Purposive sample of 5 (4 boys, 1 girl)

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Data analysis

• Data analysis Colaizzis (1978) 7 procedural
  steps.
• Team analysis (Jasper 1994, van Manen 1990) also
  employed Consultant Endocrinologist, Consultant
  Paediatrician, Paediatric Diabetic Nurse.
• Four major themes emerged
• Two significant sub-themes

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Theme 1 Living in the shadow of hypoglycaemia

• Fear of hypoglycaemia main concern for all
  participants, especially around sporting
  activities. Participants in the study spoke about
  hypoglycaemia as being one of their main worries.
  The desire to avoid hypoglycaemia with possible
  loss of consciousness especially in front of
  peers appeared to be one of their main goals on a
  day to day basis
• Participants stated that hypoglycaemia placed
  restrictions on sport and spontaneous activities
  and it involved planning for exercise in terms
  of insulin adjustment and food intake

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• Hypos are my life and lucozade is my life. I
  carry lucozade everywhere with me in case I have
  a hypo. (Vincent)
• I saw a lot of videos where people would get
  faint and all that lot and that really scares me.
  (Debbie)
• Whenever I am low I cant remember anything, what
  is going on. I just loose track of everything.
  (Stephen) .
• Whenever I go low I cant remember anything, or
  whats going on. I just loose track of
  everything. Once when I was playing with my
  friends, I just sat down in the corner for a
  while and I could not remember anything after
  that. I was walking all over the place funny and
  all that. My friends got my mum and dad and they
  gave me lucozade all I can remember after that
  was just waking up and they were holding me and
  trying to make me walk

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Theme 2 Dietary mismanagement/sweets.

• All participants expressed struggles in trying to
  adhere to healthy eating plan and all expressed
  frustration at their struggle to adhere to a
  healthy eating plan.
• Regular mismanagement expressed by 2 boys in this
  study.
• At school and at break-time the lads go to the
  shop to get sweets, sometimes it bothers me and
  sometimes it doesnt. Sometimes I have crisps
  and sometimes I have chocolate. Some weeks I
  might have one bar of chocolate and sometimes I
  might have four. (Vincent)

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• It is hard you know to keep off sweets and
  chocolate the whole time but you know you try to
  keep off it but sometimes you would have a treat
  on a Sunday or a Monday when you are out or
  whatever. (Stephen)
• At first sometimes when people would offer me
  sweets I would feel sad and get upsetI would cry
  at home and I didnt really like it. If I saw
  someone drinking fizzy drinks or eating sweets I
  would get upset and cry at home(Debbie).
• It is hard to see your friends eating sweets and
  whatever but I have to say they dont eat much in
  front of me. It is just really like in school,
  there is a shop you know I just go outside or
  whatever and just keep away from them while they
  go to the shop, later I might go in and get a bag
  of Taytos(Donal).

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Theme 3 Support

• Peer support paramount, and secondly, family
  support (support from teachers to a lesser
  degree).
• Peer Support.
• All adolescents spoke at length about their
  friends. They spoke of the support, encouragement
  and understanding of their friends. This to them
  was important as it helped them manage aspects of
  their self-care.

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• Everyone knows I have got diabetes in school and
  everything, most of my friends know anyhow, what
  to do and nearly all my friends in the classroom
  would definitely know if anything happened they
  would know exactly what to do. (Donal)
• My friend he can give me my injections and he
  would do my bloods, he does his own blood as
  well, just so he is not afraid of needles or
  whatever. I suppose if I was going out at
  night-time he would always be there or if he was
  going out I would always be there, and he knows
  exactly how much I was drinking or if I was
  drinking too much he would just say calm
  down(James)
• They look after me and you know we stick up for
  each other or whatever. You know they would look
  after me if anything ever happened they would
  phone mum and they would get me home or whatever.
  They know what to do. (Stephen)

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Support Family

• All participants spoke of the positive
  support they received from their parents.They
  spoke of their parents and siblings as being
  supportive and this helped them manage ongoing
  adjustments to their care
• I have a sister she helps me with it like she
  gives me my injection sometimes if my mum and dad
  are away she will give it to me or if they are
  away on holidays she will look after me or
  whatever, it keeps me going. (Donal)
• I got an awful fright when I couldnt feel my
  legs and mum got an awful fright but fair play to
  her she was great. She waits in the hospital
  with him the whole time I dont like being left
  alone in the hospital, so she will wait down the
  hall or whatever Well I suppose she loves me and
  all that she just wants to keep me safe and
  whatever. (Stephen)
• They all know if I go weak or something like
  that, so I dont have to worry about anything at
  all. (Vincent)
• I dont like taking injections at school because
  I dont get it right and I dont eat at the
  proper time and then I really wish my mum was
  there, she does the right thing she does
  (Debbie)

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School support

• At school in the 1st year I used to be out in the
  corner there beside the bathroom but people kept
  sort walking by so the principle provided with a
  room. He lets me use the secretarys office.
  (Donal)
• At school when I have to give my injection I go
  to the toilet. I dont like this because people
  ask me whats that and I hated having to tell them
  (Stephen)
• It is sort of hard doing my injection at school
  because I have to interrupt different classes and
  go into the home economics teachers and get my
  insulin and all that lot and have extra food. I
  dont like missing class but I have to keep my
  sugars low.(Stephen)
• Three of the participants spoke of the positive
  support from teachers however three also stated
  that it was difficult for them to check their
  blood sugars and give injections as they had no
  where to do this.

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Theme 4 Get used to it

• Acceptance of living with diabetes over time.
  Many of the adolescents spoke of diabetes as
  being part of their lives. The adolescents with a
  diagnosis of more than 5 years spoke of
  acceptance in a variety of ways. One participant
  with a diagnosis of 2 years found acceptance much
  more difficult.
• It doesnt bother me that much now, I have it so
  long, I am used to it now. I have diabetes since
  I was 10 months old so I have grown up with
  diabetes it is part of my life. (Donal)
• It doesnt bother me that much living with
  diabetes, I have it a good few years now. It
  doesnt make any difference really. (James)
• It was an awful thing to get used to when you
  were young or whatever. It was better that you
  got it when you were younger because you grow up
  with it. To get used to it say when you are a
  teenager, now when they get it they think their
  lives are ruined! It is not though, you will get
  used to it whatever. (Stephen)
• Well you get used to it and you grow up with like
  you have it for so long you get used to it after
  a while. You know your parents get used to it
  and they help you along with it and your family.
  (Vincent)
• It was hard at first so it was because I was the
  only diabetic in school and I didnt know any
  other diabetics around. It was hard when I was
  first diagnosed because I did cry when I heard
  what it was then but like it has got a bit easier
  since. (Debbie)

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Sub-theme 1 Attending clinics

• Two expressed feelings of uncertainty and dread
  when attending clinics.
• One expressed attending clinic as a positive
  experience
• Sometimes when I go back to the clinic I sort of
  dread going to see the Doctor because he will say
  that I have to change my insulin or go on four
  injections and that really upsets me, so it does
  and then my bloods are all over the place.
  (Debbie)
• I sometimes dread coming back to the clinic
  because they tell me to change my insulin because
  my bloods are high or low and it is all over the
  place ( James)

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Sub-theme 2 body image/personal identity

• The one female participant spoke about body
  image however this did not appear to be an issue
  for the male participants
• I dont like wearing shorts because you can see
  my legs and they are bruised and people ask me
  did I bump into something, so when I go swimming
  I wear a long pair of shorts over my swimming
  togs because I dont like people seeing my
  injection marks. (Debbie)

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Discussion

• Excessive fear of hypoglycaemia
• Role of dietary advice
• Support from peers family
• School support
• Acceptance
• Study limitations
• Relevance to practice

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Fear of Hypos

• All participants expressed the fear of going hypo
  as being their main worry.
• Hypoglycaemia(bgl lt4.0mmol/litre)can lead to
  various aversive symptomatic, affective
  ,cognitive ,psychological and social consequences
  which are extremely unpleasant for people with
  diabetes. An untreated hypo can lead to seizures,
  coma and in rare cases death.
• A study by Kyngas (1995) explored the meaning and
  perceived impact of type 1 diabetes among 51
  Finnish adolescents. This group felt that
  variations in blood glucose levels especially
  hypoglycaemia could cause damage to vital organs
  however the most interesting finding was that
  most participants in the study perceived
  hypoglycaemia as life threatening, as illustrated
  in a comment from a study participant. I may not
  survive the next hypo. I will not be alive Fear
  of hypos was in their minds all day and they were
  unable to forget the risks diabetes posed to
  their well being.
• Excessive fear of hypoglycaemia may have clinical
  significance as a cause of poor adherence as many
  patients avoid hypoglycaemia by keeping their
  blood glucose levels elevated

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Recommendation.

• Healthcare professionals providing care for these
  young people need to be mindful of the real fear
  that these young people experience surrounding
  hypoglycaemia and constantly need to re-enforce
  advice on hypoglycaemia, examine why it happens
  and give advice on prevention.
• 25 of hypoglycaemic episodes occur as a direct
  result of exercise , therefore advice on
  preparation for exercise and prevention of
  hypoglycaemia post exercise should be provided by
  diabetes care teams( adjustment of insulin
  doses/diet)
• Consider different treatment options eg Multiple
  Injection Therapy or Insulin Pump Therapy.

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Diet/Sweets

• It is well established that diet plays an
  integral role in the management of
  children/adolescents with diabetes however
  research has demonstrated that in reality
  compliance with diet among adolescents appears
  one of the most difficult aspects of diabetes
  management for them to follow.
• These results are not surprising as neglect of
  insulin treatment or omission of insulin will
  quickly result in serious deterioration of their
  diabetes by contrast, the consequences of not
  adhering to their diet are less immediate and
  less dramatic.
• Not following a prescribed diet is one of the
  easiest and most tempting mismanagement
  behaviours. As food is involved in many peer
  related activities and has social implications,
  adolescents find it hard to adhere to dietary
  regimes for this reason

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Recommendation.

• Nutrition therapy is an integral component of
  diabetes management yet despite this many
  misconceptions still exist regarding nutrition
  and diabetes and nutritional recommendations that
  have little or no supporting evidence are still
  given to patients (ADA 20005).
• Inappropriate/ conflicting advice can cause
  confusion for adolescents already struggling with
  diet.
• Children/adolescents should receive advice from a
  paediatric dietitian if possible
• It is important that children/adolescents have an
  adequate nutritional intake enabling optimal
  growth and development.
• Nutritional advice should be tailored to the
  adolescents individual needs, aiming to minimise
  disruption to their day to day living.
  Meals/snack times should fit in with current
  family practices, so children are not eating
  alone. Compliance therefore requires provision of
  support both practical/emotional to the
  adolescent with diabetes but also to their
  family. ( Doyle 2004)

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Discussion.

• Positive support from peers/parents was
  highlighted and this support was found to be a
  motivating factor in adhering to self-care
  activities.
• Healthcare professionals need to encourage this
  support and provide guidance for parents/families
  on how best to provide this support.
• A study by Kyngas exploring adolescents
  perceptions of parents( 1998) demonstrated that
  actions of parents were described as (A)
  motivating (b) accepting (c)disciplined. 10 of
  the young people who described their parents
  actions as motivating had good compliance.
• 9 of the young people who described parental
  actions as accepting had good compliance and 3
  poor compliance. Disciplined control described by
  6 of the young people with diabetes had good
  compliance and 16 had poor compliance.
• Young people with diabetes who percieve parental
  control as motivating tend to report good rather
  than poor compliance ,in contrast to parental
  actions which were percieved as disciplined.
• It must be acknowledged however that adolescence
  is a time of great change for adolescents and
  parents alike ,parents may need assistance and
  support in learning how to let go and facilitate
  actions by adolescents

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Recommendation.

• Parents support programmes.
• An educational support programme is currently in
  place in the HSE West. This programme is
  facilitated by multidisciplinary paediatric team
  members and the DFI.
• Support for peers.
• Buddy activities/ info evenings/ bowling.
• Support for schools.
• One school visit from a diabetes nurse.( Sept
  2007)
• Education sessions for teachers.
• Educational literature on the care of children
  with diabetes.( Guidelines being developed UCHG.)

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Acceptance.

• Many participants in this study spoke of diabetes
  as being part of their life
• Gardiner(1197) studied the psychological
  implications of having diabetes for a group of
  adolescents and found that there was a
  correlation between respondents feelings about
  diabetes and the length of time since diagnosis.
  Those who had the condition for 1-5 years tended
  to pass through a period of non-acceptance and an
  unwillingness to work at achieving good diabetes
  control. For the 1st year after diagnosis much
  time is spent learning to cope with the treatment
  and altered lifestyle, however after a period of
  time realisation sets in that this is a permanent
  condition. The initial sympathy of others may
  disappear and rejection of diabetes can manifest
  itself in rebellious behaviour.
• After a few years the individual begins to accept
  the condition, thus resulting in improved control
  and it should become possible to fit diabetes
  into their desired lifestyle.

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Recommendation.

• Health care professionals must bear in mind the
  different stages that people with diabetes
  progress through we will be better placed to
  understand the feelings and coping mechanisms
  that young people use during different phases of
  their disease process.

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Attending Clinics.

• Three participants spoke about their experience
  attending clinics and expressed uncertainty and
  fear.
• As non attendance at clinics is generally high
  among adolescents non judgemental relationships
  by healthcare professionals with this group is
  clearly a priority. There is a risk that clinical
  agendas set by professionals may not meet
  adolescents needs and may become disempowering
  for these young people and lead to poor uptake of
  services.
• Saunders ( 1998) found that if adolescents were
  being nagged or given out to and never see the
  same doctor twice they were likely to stop
  attending clinic.
• Skinner(1997) discussed the role of fear and
  threat of diabetic complications given by health
  care professionals and states that this is a
  dangerous weapon to use in an attempt to improve
  compliance and is often counter productive.

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Recommendation.

• Health care professionals must refrain from using
  alternative diabetes therapy(4 injections) as a
  threat.
• Do not use complications as a threat.
• Approach discussions on complications in a
  sensitive manner.
• Enquire into the adolescents, lifestyle and
  utilise this knowledge so that injection and
  treatment regimes fit in with the adolescents
  constantly changing lifestyle.
• Provide consistency of care for these young
  people.
• Have an open door policy for clinics.
• Flexible clinic times/ after school.
• Telephone support.
• Listen to young people. Try to get them to
  generate their own solutions if they are going to
  implement them they will need to feel they are
  relevant and feasible within their social group.
• Evaluate care provided to ascertain what
  approaches do and do not work.
• Network with other colleagues involved in
  providing paediatric diabetes services and share
  approaches to care.
• Provide transitional care before transfer to
  adult services. ( UCHG 2007)

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Thank You.

• QUESTIONS?

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