Given the complexity of the health care system, it is likely that at some point in your role as a family caregiver, you will find yourself acting as an ―advocate.‖ Continual changes to the health care system in terms of staffing levels, facility and hospital closures, care designations and so forth, can make it difficult for those unfamiliar with the system and in ill health, to know how best to get the care they need. Therefore, you may find that as a family caregiver you need to be present a good deal of the time to ask questions, plan for and secure services, and ensure all care needs are being taken care of. The extent of the advocacy role you take on will depend in part on the age, ability, and condition (including frailty) of the person you are caring for as well as the nature of your relationship with the care recipient and your comfort level with taking on the role of advocate.
Advocacy, especially for elderly people and other vulnerable individuals, is necessary not only to ensure access to services, but also to ensure that the individual’s voice and needs are respected and heard. What does it mean to be an advocate? The following definition of effective advocacy, by J. Dale Monroe, Community Services Oxford Regional Centre, Woodstock, Ontario, is helpful because it is particular to dealing with human services:
“Effective advocacy is defined as a nonviolent empowerment and support process, through which families with relatives who are chronically ill or have a disability can constructively express dissatisfaction and contribute to creative solutions to problems existing in human services systems.” Advocacy, especially for elderly people and other vulnerable individuals, is necessary.
The following approach to effective advocacy is a combination of strategies provided by J. Dale Monroe and what we have learned over the years at the Family Caregivers’ Network Society in working with family caregivers.
If possible, plan ahead.
Be realistic about the future. If you have elderly or disabled relatives in the family, chances are they will require some kind of support or caregiving. Now may be the time to find out what health services are available and how to access them. Locate community agencies that support older people or adults with disabilities, or provide support and information for family caregivers. The worst time to try and figure out what is available and how to access it is when you are in a crisis situation.
Advocacy is situation dependent.
The role of advocate varies depending on the situation. For example, if the care recipient is in a care facility, the main focus will likely be on getting to know and creating relationships with the staff and balancing the needs of the care recipient with the need to create a positive living environment. Often the concern is being seen as a complainer and the possibility of recrimination by staff. However, not saying anything if you have real and serious concerns about the care that someone is receiving can be problematic too.
Assertiveness can be described as the direct, honest, comfortable, and appropriate expression of feelings, opinions and beliefs, through which one stands up for his/her rights without violating the rights of others.1 This is not the same as getting angry or being aggressive.
Keep your eye on the “big picture.”
This refers to the importance of understanding how the system works. Whether it is understanding how to access community health services, the rules and regulations of the care facility you are dealing with, or who is in charge on a hospital unit, it helps to become familiar with the lay of the land. This can save time and prevent unnecessary stress and frustration.
Find an appropriate time.
Timing is the essence of good advocacy and can make the difference between managing the problem or making it worse. Be aware of your feelings and wait until you are less anxious, angry or upset before trying to deal with the situation. For example, if you are concerned that your mother’s toileting regime is not sufficient and she is wetting herself, don’t attempt to address this at the time that you go in to help her with her lunch.
Meal times are very busy in care facilities and you probably won’t be successful and may even agitate the staff. Arrange to meet and talk with the appropriate person at a time when a discussion can take place and both parties can focus on problem-solving.
Don’t go alone.
In situations in which you have serious or continuous problem or the relationship is strained, it can help to take a support person. Whenever possible, families should work with established groups or individuals in trying to secure a resolution, such as a family council in a facility if they have one, an appropriate agency or consumer advocacy group or an individual with an established reputation.
Timing is the essence of good advocacy and can make the difference between managing the problem or making it worse.
Show appreciation and support.
Finally, it never hurts to let others know your appreciation for their efforts. Successful resolution of a concern or problem in partnership with others strengthens relationships that in the long run, benefit everyone.
Despite your best efforts, there may be times when you find that you are still concerned about some aspect of the health care system, and your personal advocacy efforts as a family caregiver have not moved things along as much as you expected. If that happens, you may want to consider some of the more formal advocacy service options described below.
1 Definition by: J. Dale Monroe, Community Services Oxford Regional Centre, Box 310, Woodstock, Ontario