'kids aren't just tiny adults': how cheo is trying to improve home care for young people like chloe
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linda tabet and her daughter, chloe, enjoy smiles together. chloe was born with a genetic illness so rare that hers is one of just about 20 cases in the world.
tony caldwell
/
postmedia
linda tabet is willing to sacrifice her own health to make sure her daughter, chloe, gets the care she needs. she just wishes it didn’t happen so often.
chloe was born with a genetic illness so rare that hers is one of just about 20 cases in the world.
the red-headed 10-year-old is non-verbal and losing her vision. she uses a wheelchair and a feeding tube and depends on someone else’s care for all her needs and activities.
chloe attends school and loves being around other children. she has a playful personality, says her mother, who has been in touch with most of the other families affected by the rare disease, involving mutation of the gene atp8a2, to learn more about her daughter’s illness.
tabet, a single mother in the embrun area, provides most of the care for her daughter, often turning it into playtime, for instance by singing to her.
the small family qualifies for 15 hours a week of assistance in the form of home care, which would give tabet a break. but that help seldom materializes because of staff shortages, which are severe in their home community. such shortages are a critical problem for home care across the province.
equally frustrating for tabet is when personal support workers do arrive at the home but are either unwilling or unable to properly care for chloe because they don’t have pediatric experience.
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tabet has had psws come to the door and immediately turn around because they are not comfortable working with a child with so many complex needs. she has “politely refused” others because they didn’t have any experience caring for children.
sometimes, tabet says, she weighs whether she has the energy to train someone who might just be there once. it means she seldom gets a break.
tabet is among parents who have advocated for better training for health workers caring for children in their homes. it is a growing need as technology helps children and youth with complex care needs remain at home.
“our children are living longer, but the resources don’t meet the demand,” said tabet.
helping to improve home care for kids is an aim of ottawa’s kids come first health team, made up of more than 60 organizations and individuals that provide care and work with children and youth throughout eastern ontario, from hospitals such as cheo, to clinics, community and home care organizations, and more.
kids come first recently launched a centre of excellence to improve pediatric home care. it is focused on giving home-care workers education and skills to provide specialized care to infants, children and youth at home and in the community.
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the aim is to bring these children and youth the same level of care as is provided at cheo. “the kids come first health team understands that babies, kids and teens aren’t just tiny adults. they have specialized needs and we want to ensure they receive the specialized care they need,” said jennifer proulx, cheo’s vice-president of child development and community services.
“home-care organizations have been challenged to find enough workers with pediatric skillsets, so we’re bringing them this expertise through training and resources to make it more accessible to everyone.”
proulx said the goal is to equip home-care workers with the knowledge and skills that give them confidence to care for infants, children and youth with high care needs.
“it is a pretty special environment working with children. this is an opportunity to make sure the staff feel well positioned and are becoming experts in their own right.”
in order to do that, cheo nurse educator lorraine vanmunsteren has been leading training sessions and will take that training to centres across eastern ontario, bringing child-sized anatomical models with her.
vanmunsteren said there is a clear need for the training.
“what we are seeing across health care is that there are patients who don’t need to be treated at the hospital but do need nursing care in their homes. that follows for pediatrics as well. we know children do better at home with their families and at school with their friends.”
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but helping children requires different training than working with adults and many home-care staff are inexperienced working with children.
“kids are just different. the way we provide care to kids is more patient- and family-centred. we don’t just focus on the patient, we have to consider the whole family unit. sometimes there are little things that nurses who haven’t worked in pediatrics don’t think of,” said vanmunsteren.
tabet said it is also crucial that caring tasks are made fun for children, like when she sings with chloe. “you can’t forget you are dealing with a child who needs some form of play in the care.”
tabet said she was surprised to see how few home-care workers had experience with children, especially children with complex needs. “my child being non-verbal, for example, has made it quite difficult for some of the workers who come in.”
she said the services chloe has received from cheo and roger neilson house over the years have been “life-changing.” tabet and other parents like her want to see some of that magic in the care their children receive at home.
the work of the kids come first centre of excellence, she said, is a step in the right direction.
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