Led by co-facilitators MS Otago community connector Katie Burns and volunteer Tillie Lassman, the informal support group for children aged eight to 16 years who have a parent/caregiver with multiple sclerosis or a neurological condition, will be launched on May 14.
The support group is the brainchild of Ms Lassman, a social worker and MS Otago volunteer, who grew up with a father who had MS and has undertaken extensive academic study into the impact on children of living with a ill parent/caregiver with a chronic condition.
"These children experience the day-to-day impact of their parent’s condition on family life, but are often overlooked when this is being discussed," she said.
"Living with a parent or caregiver who has a chronic condition definitely impacts your day-to-day life as a child, but there is not a lot of information out there on how to access support."
Ms Lassman approached MS Otago with the concept for a support group and was delighted that the decision was made to establish the trial support group. She has worked alongside Ms Burns to develop the programme.
Ms Burns said the concept for the group was "ground breaking" and it would be exciting to see how it developed.
Ms Burns said, while she and Ms Lassman would be facilitating the support group, it would be important to keep it informal and engaging for the youngsters.
"The aim is not to create a therapeutic group, but to have a supportive atmosphere where tamariki and rangatahi can find their own community," Ms Burns said.
"We will be learning from them as much as they learn from us."
Ms Lassman said young people could end up shouldering a lot of responsibility within families, caring for themselves, parents and siblings, so it was important that they had a supportive space to explore their feelings.
"MS can vary greatly from family to family, so we can try and help the children to understand that and thereby hopefully help to grow understanding between parents and children," she said.
Ms Burns said the support group would be activities based, with access to the outdoors, giving children plenty of fun things to do, while allowing them space to talk, share thoughts and ask questions at their own pace.
"There will be lots of opportunities for the kids to get to know each other."
The MS Otago support group for tamariki and rangatahi will be run for a trial period of six months, starting after school on Thursday May 14, with regular sessions at Fairfield Community Hall.
The group is reserved for families experiencing the impact of multiple sclerosis and other neurological conditions.
For more information, or to register contact MS Otago — emailing katie.burns@msotago.org.nz.
