Resource Guide for Family Caregivers
Being part of the care team

As a family caregiver, it is inevitable that at some point you are going to need to work in partnership with members of the health care system to ensure proper care and decisions on behalf of the person receiving care. For example, as a family caregiver, you probably will have to rely upon health care providers to diagnose, then explain the diagnosis, as well as other acute and chronic problems of the care receiver, and to provide information on options for services and support.

Despite increasing reliance on family members to provide more complex types of care at home, and despite many policies that suggest that caregivers are an important component of the health care system, the day to day experience of family caregivers may not reflect these changes. The reality is that health care practitioners typically have competing demands on their time and can overlook the practical importance of including family caregivers as partners in a meaningful way. In addition, family caregivers are often struggling with multiple demands in their own lives, apart from their role as a caregiver, such as responsibilities associated with employment, raising a family, marriage/relationships, their own health, and so forth.

Ultimately the person receiving care is likely to obtain better care all round if everyone is working collaboratively and in a mutually respectful manner. As a family caregiver, your experience and knowledge of the care receiver is invaluable to health care practitioners, many of whom will not know the person and his or her needs nearly as well as you do. The following are some of what family caregivers have to contribute.

Insight into the needs, preferences and values of the care receiver

Family caregivers, especially those who live close to or with the care recipient, often know what the care recipient’s preferences and needs are with respect to personal privacy, emotional well-being, diet, and so forth. In addition, family caregivers typically have practical expertise in the day to day requirements of the person’s care and know how the care receiver reacts to certain type of procedures or treatments.

Family dynamics

Family caregivers often provide useful insight into family dynamics that can help health care practitioners put into place a plan of care that is practical and realistic and that recognizes what can or cannot be tolerated or achieved by a family. It is of no use, for example, for a care plan to be made based on an assumption that a daughter is going to look after her father if in fact there is a life long history of acrimony, disharmony or abuse. As well, family caregivers can often provide clues regarding more subtle types of behaviour patterns and family history that can help health care practitioners better respond to a care receiver’s needs. In some instances, family caregivers may be able to assist with the managing of family dynamics so that they do not interfere with the care of the person.

Cultural and language needs

In situations involving specific cultural or language needs, family caregivers can help health care providers by alerting them to particular cultural practices or values or by acting as a translator.

Act as a voice for care recipient

Family caregivers are in a unique position of being able to act as a voice for the care recipient with facility staff or other health care providers. With their knowledge of the care receiver and familiarity with his or her needs, they can act as an advocate and help interpret the needs of the care recipient to others providing health care as well as advocate for certain levels or types of  care. See Section 6 for a more in-depth discussion of the “family caregiver as advocate.”

…the person receiving care is likely to obtain better care all round if everyone is working collaboratively and in a mutually respectful manner.

Good communication goes both ways

As one might expect when working as part of a team, communication goes both ways. There is much that health care providers can assist family caregivers with, including helping them to recognize the limits of what they are willing or able to do. Being a family caregiver does not mean that you are obliged to do it all, especially if doing it all turns out to be bad for your health by causing you additional physical or emotional stress or by perpetuating difficult historical relationships!

Look for health care providers who:

  • recognize that as a family caregiver, your health and well- being are important, too.
  • ask you questions about your health, about the nature of your relationship with the care recipient
  • are aware of existing resources for caregivers and can point you in the right direction or help you to access these resources.

What is your level of involvement?

How do you know if you are working as part of a team on behalf of the care recipient? The answer to this may partly lie in how you feel about your role and involvement and the way that you are treated.

Indicators of satisfactory involvement by caregivers

  • Feeling that information is shared.
  • Feeling included in decision making.
  • Feeling that there is someone you can contact when the need arises.
  • Feeling that the services are responsive to your needs (and to those of the care recipient).

Clearly, good information is essential to understanding and coping with your loved one’s illness or medical condition!

What makes for a satisfactory level of involvement will likely vary from person to person. Having an open discussion with health care providers about the kind of relationship that you would like to have, and the level of involvement you want, can be a first step. Here are some questions that may help guide the discussion:

  • What information do various health care providers need to know about the care receiver?
  • What do you, as a family caregiver, need to know about the procedures undertaken by health care providers, and about who’s who amongst the health care providers in the team?
  • What kinds of information do you, as a family caregiver, need?
  • What level of involvement do you want, and how can that be achieved?
  • What are the limitations to your involvement? For example, can you be reached at any time during the day? Are there times when you are not available?

Building rapport

A partnership or teamwork approach implies that both parties are contributing equally to the care of the person. Teamwork often involves building rapport, which means establishing a level of trust and open communication such that you as family caregiver feel comfortable discussing your concerns, questions, needs and so forth about the care receiver.

Look to see that the health care providers with whom you are working take your role and involvement seriously.

Indicators that others are taking your role seriously

  • Confirming or validating your feelings and experiences.
  • Taking a collaborative approach.
  • Using a respectful tone of voice when speaking to you.
  • Using language that you can understand.
  • Asking about and acknowledging the strategies you have in place already.