Caregivers of Children with Chronic Illness

There are many scientific studies on issues related to medication use among children with chronic illness and the role of their caregivers. Below is selected information that has been summarized from the scientific literature. References are given for those interested in learning more about the research.

More than half a million children and youth are living with long-term physical or mental health problems in Canada. Asthma accounts for a large portion of chronic illness among Canadian children.¹ 1. Canadian Council on Social Development. 2006 The Progress of Canada’s Children and Youth 2006.Available at: http://www.ccsd.ca/pccy/2006/. Nearly 7.7% of children and youth are limited in what they can do by a chronic condition.² 2. Canadian Institute of Child Health. 2000. The Health of Canada’s Children. 3^rd ed. Ottawa: CICH. The rates are considerably higher among Aboriginal children and youth: 22% of Aboriginal youth have a disability.³ 3. Hanvey, L. 2002. Children with Disabilities and their Families in Canada. A Discussion Paper. Commissioned for the National Children’s Alliance First Roundtable on Children with Disabilities. Some need complex care; 43% of children with disabilities have conditions considered severe or very severe.⁴ 4. Canadian Council on Social Development. 2006 The Progress of Canada’s Children and Youth 2006.Available at: http://www.ccsd.ca/pccy/2006/.

Among children with disabilities or chronic illness, 41.5% use prescription medicine daily. Medication is taken at least once a week by 10 to 14-year-olds, and regularly by 5 to 9-year-olds.⁵ 5. Canadian Council on Social Development. 2006 The Progress of Canada’s Children and Youth 2006.

Poor compliance with long-term therapy is a worldwide problem, according to the World Health Organization (WHO).¹ 1. World Health Organization. 2003 Adherence to Long-Term Therapies: Evidence for Action. Geneva: WHO. The results are poor health and increased health care costs.² 2. WHO defines adherence as, “the extent to which a person’s behaviour - taking medication, following diet, and/or executing lifestyle changes - corresponds with agreed recommendations from a health care provider.”

One in five Canadians used prescription medicine such as pain pills, sleeping pills, antidepressants and diet pills in the 1990s. People use more prescription drugs as they age.³ 3. Health Canada. 1995. Canada’s Alcohol and Other Drugs Survey, Preview 1995. Ottawa: Minister of Supply and Services. More recently, medication use has risen as hospital stays have decreased.^4,5 4. Canadian Institute for Health Information. 2003 Health Care in Canada. Ottawa: CIHI.
5. Canadian Institute for Health Information. 2004. Drug Expenditure in Canada 1985-2003. Ottawa: CIHI.

That means more Canadians than ever before who are seriously ill are using medications outside of controlled hospital settings, especially frail seniors and children with chronic illness.

Of necessity, family members (or friends and neighbours) – mostly women – are the main care providers. Access to home care support varies across the country and from community to community. The incidence of hospital admissions and readmissions due to preventable drug-related problems is substantial.⁶ 6. Canadian Institute for Health Information. 2004 Healthcare in Canada. Ottawa, CIHI.

There is a variety of professionals who provide support services, including home support workers, registered nurses, physical therapists, social workers, case managers and community pharmacists.⁷ 7. The Homecare Sector Study Corporation. 2003. Canadian Homecare Human Resources Study: Technical Report. www.homecarestudy.com. Apart from family physicians, these community care providers are often the only source of information for caregivers.

Yet fewer than 10% of such “formal” caregivers have any training in working with “informal” caregivers. This is despite the fact that 76% of caregivers want more information, advice or training on caregiving and community resources.⁸ 8. Ibid.

An April 2006 review of research literature produced by the Safe Use Project examined issues affecting children with chronic illness, including Aboriginal children. It looked at what information is available about how they take their medication. The resulting Synthesis Report addresses these questions:

Do children with chronic illness take their medicine properly?
What are the rates of drug-related morbidity and mortality for children with chronic illness?
What factors affect whether children with chronic illness take their medicine properly?
What strategies are there to get children with chronic illness to take their medicine properly?
What gaps are there in what is known about these topics?

The needs assessment will focus on the resources available to caregivers of children with chronic illness, to determine their information, education and support requirements regarding safe medicine use. Such information can guide the development of tools and resources in the future.

This component of the Project is currently under way and will be completed in the Spring of 2007. Please check back for further details about this work.