Canam (1993) lists 8 common tasks related to caring for someone with an illness or disability:
- Accepting the condition
- Managing the condition daily
- Managing the developmental needs of the person with a chronic illness
- Managing the normal developmental needs of other family members
- Coping with ongoing stress and crisis
- Assisting family members to manage feelings
- Educating others about the chronic condition
- Establishing a support system.
Only one of these eight tasks (#2) has to do with direct medical needs!
Research shows that economic resources, social support, good communication, family cohesion, mental and physical health, and life-skills all contribute to better medical outcomes for people with a chronic illness or disability, and their families. It is significant that these are the very characteristics placed most at risk by the circumstance of caregiving.
Family resources and environment should be considered integral to effective medical treatment. Assess the circumstances of your patients, and consider them when planning medical care and intervention. Just asking the right questions will empower patients and caregivers to consider aspects of their health, lifestyle, and well-being that could improve treatment adherence, and facilitate better medical outcomes.
Often, medical interventions are prioritized while families are left to figure out how to manage the logistics of caring for someone with an injury, disability, or illness.
Does a person quit working to focus on Work of Care?
Can they afford necessary interventions, or need help making difficult choices when some treatments are not accessible?
What happens to friendships and social ties when hiring babysitters, or accessing respite care, is not an option?
How do they identify and advocate for a loved one’s developmental or educational needs?
How do they maintain their own health, and positive relationships with friends, spouses, children, and other family members?
What should they do when the person they care for is bullied or socially ostracized?
Where can they go when they feel overwhelmed?
Research shows that even small interventions addressing and supporting Work of Care can improve treatment adherence and medical outcomes.