Often family caregivers are unprepared for their caregiving role as an advocate. The extent of the advocacy role depends on the age, ability, and condition (including frailty) of the person being cared for. The health care system is very complex and even those who are employed in it, when having to access services themselves, find it complicated. The situation in health care has become even more complicated over the past several years with insufficient staffing in both acute care hospitals and long term care facilities. Advocacy, especially for elderly people and other vulnerable individuals, is necessary to ensure not only access to services, but to ensure the voice and needs of the individual are respected and heard.
What does it mean to be an effective advocate? The following definition of effective advocacy provided by J. Dale Monroe, Community Services Oxford Regional Centre, Woodstock, Ontario is most helpful because it is particular to dealing with human services and it implies dialogue and partnership - two cornerstones of effective advocacy.
"Effective advocacy is defined as a non-violent 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 service systems."
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 at all possible, plan ahead. This means being realistic about the future (near or distant) if you have elderly relatives in the family. Chances are they will require some kind of support or assistance. Be aware also that the nature of caregiving is insidious - it can creep up on you ever so gradually. Find out what health services are available and how to access them. Locate community agencies that support elderly people, or provide support and information for family caregivers. The absolute wrong time to try and figure out what is available and how to access it is when you are in a crisis situation.
The advocacy role varies depending on the situation. If the family member or friend is in a care facility the advocacy role needs to be considered in a different light than, let's say, advocating for services in the person's home. The care facility is now the person's home where dialogue and partnership are even more important as building relationships with the staff becomes the focus. The fear of recrimination by staff if you "complain", although mostly unfounded, can also become a factor. The impulse is to not say anything and this can be just as destructive as being aggressive and obnoxious. The ability to constructively express dissatisfaction or a problem requires assertiveness.
A key trait of an effective advocate is the ability to be assertive. J. Dale Monroe offers this definition: "Assertiveness can be defined as the direct, honest, comfortable and appropriate expression of feelings, opinions and beliefs, through which one stands up for her/his own rights without violating the rights of others." Nothing exacerbates a situation more than when a person, in the process of exercising their own rights (or those of another), tramples on the rights of others, including the rights of those who are in the position of making decisions and providing a service.
"Get the big picture" refers to the importance of understanding how the system works. Whether it's understanding how to access community health services; the rules and regulations of the care facility your family member is now living in, or who is in charge on a hospital unit, it pays to become familiar with the 'lay of the land". This can save you valuable time and prevent unnecessary stress and frustration.
Timing your advocacy efforts carefully can make the difference between managing the problem or exacerbating it. Being aware of your feelings and checking yourself emotionally before approaching someone with a problem is a good idea. Because we are trying to act normal in an abnormal situation - emotions can run high where you run the risk of making mountains out of molehills. For instance, at the onset of a hospital admission, and if the individual is not already receiving home care services, you will need to identify the person who does the discharge planning to ensure there are appropriate supports for them when they are sent home. If the individual is already receiving home care services, their case manager or social worker needs to be contacted regarding their stay in hospital so planning for additional service on discharge, if necessary, can be arranged.
In facility care situations, find out what the procedure and process is for raising concerns, and who you speak with and when. For example, if you are concerned that your mother's toiletting regime is not sufficient and she is wetting herself, don't attempt to address the issue at the time you go in to help her with her lunch. Meal times are very busy times in a care facility and you probably won't be successful, not to mention running the risk of agitating the staff. Arrange to meet and talk with the appropriate person at a time when a discussion can occur where both parties will be able to listen to each other.
In the case of a serious or continuous problem, don't go it alone. There is strength, power and support in numbers. Whenever possible, families should work with established groups or individuals in trying to secure a resolution, for example, a family council in a facility if they have one, an appropriate agency or consumer advocacy group (like the Family Caregivers' Network), or an individual such as your local political representative. Be willing to compromise, as politics is the art of compromise. Results are the goal - revenge and ego-driven self-interest can do more harm than good.
Finally, don't forget to express appreciation and show support for those who were helpful in solving the problem or concern. Successful resolution of a concern or problem in partnership with others strengthens relationships that, in the long run, benefit everyone. Expressions of appreciation when things are going well or when someone has been particularly helpful can motivate those who provide service to want to provide you with the support you need - because you can't do it alone.
By: Lorna Hillman, Executive Director, Family Caregivers' Network Society. Network News, Vol.15/No. 2, July 2001.
