Grandparents
In the Brighton research, it became clear that grandparents provided most families with the most significant ongoing support, and that this support included emotional, practical, financial aspects and advice. Parents nominated grandparents for supplying ‘key support’ more often than any professional or voluntary organisation. There were clearly crucial moments when important information or advice, most often related to the medical care of the child, came from healthcare professionals, but otherwise grandparents emerged as the unsung heroes. Other research shows that the more social support a family has the more likely they are to carry out prescribed treatment[1]. This would be another reason for to encourage grandparents to become better informed about childhood arthritis and how to help the family.
The down side of this was that in the families where the grandparents were absent, unavailable, unwilling or unable to help then families were more likely to feel alone in their efforts to meet the daily challenges. One mother said ‘in waiting for diagnosis caused a lot of stress between my husband and me and we tend to take our worries out on each as we have no extended family.’
Grandparents said...
In an informal study by Contact a Family[2] , grandparents of disabled or chronically ill children said:-
‘Grandparents often feel afraid and do not quite know how to help or how to get involved.’
‘Sometimes it is easier to back off, but if you are flexible and prepared to think around the situation, there might just be something you can do which can make life easier.’
‘Sometimes, it is the little things that matter.’
Ideas for grandparents by grandparents
- When offering help, please be honest about things you would feel unable to do.
- Listen! Be a sponge!
- Just be there.
- Give them money now to help them buy the help, equipment or meal out that they need: don’t wait to leave it to them in your will.
- Be led by parents – they will tell you what they need.
- Keep offering help - things change and they may need help suddenly and feel unable to ask you. Tell them that you will try to help in any way.
- You can’t give advice unless asked to.
- Try to understand the impact of the illness.
- Learn to be thick skinned – sometimes parents need to let off steam and you are a safe person to do it to.
- Offer help – don’t wait to be asked, but be sensitive.
- Information is very important to find and share – especially if it comes from specialist organisations or services.
- Brothers and sisters need your extra love, care and attention from you.
- Don’t dump your upset about the child’s illness on the parents. They are already coping with the child’s distress, and their own feelings.
- Get involved in a local support group so that you have a group to talk things over with (for example Arthritis Care or Children’s Chronic Arthritis Association).
- Help these groups fundraise so that services can improve for families.
- Generally, extra sweets and presents just for the child with arthritis cause problems for the other children – ask the parents for ideas of suitable gifts for each child.
Problems with Grandma!
One mother said ‘I don’t feel I can really trust her (grandmother). I feel terrible saying that. She didn’t tell us about our daughter’s fall last visit. She gives them sweets and she gives them all the things that she shouldn’t have.’ Other parents also said that adults who do not know how else to express their concern sometimes showered the children with arthritis in sweets or treats. Sometimes adults treated the child differently to their healthy siblings. Generally, families wanted everyone to treat the children the same rather than ‘as if she is something very fragile’.
[1] Eiser C (1993) Growing up with a chronic disease: the impact on children and their families. London : Jessica Kingsley Publishers Ltd.
[2] See ‘Grandparents’ factsheet (page 5), Contact a Family, 209-211 City Road, London EC1V 1JN. Telephone (020) 7608 8700, Helpline 0808 808 3555 (10 am-4 pm, Mon-Fri).
