Support from parents and family

Having a child or teenager diagnosed with type 1 diabetes has an impact on the whole family, brothers, sisters, grandparents, and most of all on parents. It doesn’t necessarily mean that diabetes changes the way family members feel about each other, but it can affect family routines and can at times make everyone more tense and emotional. Here young people talk about how their families responded to their diabetes, and how it took time for some families to learn to cope without ‘stressing out’.

Lewis describes his diagnosis as a shock’s for everyone and feels that managing diabetes is an ongoing team’s effort.

Age at interview 12

Gender Male

Age at diagnosis 4

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She describes how her Mum reacted when as a teenager she had rebelled against diabetes.

Age at interview 22

Gender Female

Age at diagnosis 9

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Generally parents were said to take different roles and responsibilities. Usually both parents provided support and encouragement, but most young people said their mothers got more involved practically and emotionally than their fathers, several of whom were described as ‘distant’. Young people talked about how much their parents had been upset by their diagnoses, especially at the beginning.

His mother is more in tune with his diabetes than his dad who tends to see things more…

Age at interview 17

Gender Male

Age at diagnosis 3

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Her mum and nan have been a huge support especially recently when she was in hospital.

Age at interview 18

Gender Female

Age at diagnosis 6

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At whatever point young people were diagnosed with diabetes, most said that initially it was their mothers who helped them learn how to look after themselves. Mothers usually took them to the diabetes clinic for checkups and kept in touch with nurses and consultants. Many young people said their mothers used to do all their injections and several described how difficult it had been for their mothers. Once they felt they knew what they were doing, most young people said that they wanted their mothers to ‘back off’ a bit and let them be more independent.

She knew her mum hated giving her injections in the beginning in case she was causing her a lot…

Age at interview 22

Gender Female

Age at diagnosis 9

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She explains how her mother has been more relaxed since she started on an insulin pump, though…

Age at interview 18

Gender Female

Age at diagnosis 7

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In many instances young people said their relationship with their parents and families changed after they were diagnosed and that they became even closer. Several young people commented on how certain members of their families seemed to know instinctively when they were ill, sometimes even before they knew it themselves.

Says that her relationship with her mum was good before her diagnosis but now it is even better…

Age at interview 18

Gender Female

Age at diagnosis 18

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He knows his parents nag him but at the same time he realises they have developed almost a second…

Age at interview 17

Gender Male

Age at diagnosis 14

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Parental worry and anxiety could lead to problems and strained family relationships. Some young people said that they felt they wanted to protect their parents’ feelings and so chose not to talk to them about diabetes. Other young people said that they went through times when being diabetic made them feel moody and angry which they knew had made them difficult to live with.

There is Type 1 diabetes on his father side of the family and he thinks his parents feel guilty…

Age at interview 16

Gender Male

Age at diagnosis 10

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Her mother was diagnosed with Type 1 diabetes when she was a teenager and has been most…

Age at interview 17

Gender Female

Age at diagnosis 2

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Their mother still worries but they have been encouraged by the whole family to pursued their goals.

Age at interview 18

Gender Male

Age at diagnosis 9

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Growing up with diabetes wasn’t easy because she had serious hypos which made her mother more…

Age at interview 16

Gender Female

Age at diagnosis 7

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Looking back on their teenage years, many young people explained how they had wanted to take more control of their diabetes and be allowed to make decisions for themselves, even if that meant making mistakes sometimes. (See also ‘Managing diabetes as a teenager’). Working out how to take responsibility away from parents could take time and often depended on when the diabetes had occurred: those who were diagnosed as children were more used to their parents having control, whereas those who were diagnosed from the age of about 16 said they wanted more freedom and autonomy. Even if they had argued with their parents, most people said they seemed to understand each other better as time went on.

She was very dependent on her parents until she started to do her own injections. Now, her…

Age at interview 17

Gender Female

Age at diagnosis 3

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She says that her mother sometimes finds it hard not to take control particularly over food, and…

Age at interview 19

Gender Female

Age at diagnosis 3

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He was diagnosed at the age of sixteen and says that his whole family including his mother let…

Age at interview 24

Gender Male

Age at diagnosis 16

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Relationships could also become strained when the young person’s blood glucose levels fluctuated especially when parents responded by trying to take more control or give advice. Several young women talked about their experience of eating disorders and how they had stopped taking insulin. One young woman said she knew how secretive she became towards her family as she struggled with her diabetes and her eating disorder.

Says that every time she feels tempted to miss an insulin injection she talks to her parents who…

Age at interview 19

Gender Female

Age at diagnosis 14

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He realises that his mother was very anxious when he was first diagnosed but that now both his…

Age at interview 20

Gender Male

Age at diagnosis 10

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Most described their relationships with brothers and sisters as ‘normal’. Those with older sisters said they were generally very supportive. Others said they appreciated having brothers/sisters who recognised when they were ‘going hypo’ and who knew exactly what to do, including giving them injections if necessary. Young people pointed out that as they grew older their relationships with their siblings had improved and that diabetes became less of an issue. But younger children could feel ‘left out’ as parents attend to the needs of their siblings.

Says that his sisters get annoyed because of the extra attention he gets at home but that he…

Age at interview 16

Gender Male

Age at diagnosis 11

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He thinks that his relationship with his sister has improved now that they are older and says…

Age at interview 20

Gender Male

Age at diagnosis 10

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Lewis’s younger sister felt jealous’s when he went to meet the Queen and finds it tiring when the family conversation is all about diabetes.

Age at interview 12

Gender Male

Age at diagnosis 4

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School and type 1 diabetes

Here the young people interviewed talk about how they fit diabetes around their own life activities as far as education and work are concerned and...