Ann Burkhardt: Thank you very much. Welcome to all of the participants. I am happy that you have taken the time today to attend this webinar. This webinar will review the professional literature on caregiving, theories, types, roles, responsibilities, adjusting to change over time and outcomes. It will offer insights into current practices in professional and personal caregiving, plus offer reflections on value and access to resources.
Review of the Literature
Many of the articles that are available in the recent literature are either qualitative or a mixed method in research. Qualitative research is more descriptive and draws upon themes.
Themes
Autoethnography.
Autoethnography, or sharing one's own lived experience is one theme. There are articles in the American Journal Of Occupational Therapy. There was one primary article, and I have it at the end in my bibliography. Hoppes was a professor at the University of Southern California, and she had her own experience in terms of dealing with spina bifida. She described a number of issues that she encountered in her own life. There is also the issue of how caregiving affects your relationship with the person you are caring for and what the meaning is in your life and theirs. If you are caring with someone with end of life issues, it is sometimes the opportunity to place some personal meaning and perspective. If there was a history in the past, it is important to try and understand that history and frame it for yourself or for them so that there is peace at the end. Autoethnography looks at it in terms of the types of meaning in people's lives.
Social Participation.
This is both an issue for people receiving care and giving care. If the person receiving care has impairments that affect their social participation then it is incumbent upon the caregiver to help to enable them to participate. It can be socially isolating for example if one has dementia, unless the community really accepts it and does what they can to care for that person as a member of the community, even though there are having a change in their performance and their quality of life. The caregiver's presence can contribute to communication.
Role Reversal.
Roles can change relative to providing care when personal care has to be provided, things like personal hygiene or assist with issues that were formally private for a person. It can an impact upon one's relationship. Parents may have difficulty keep up any portion of the role that they have held or have participated in for their lives if they are being cared for by children. An example of role reversal is something that happened in my own family. In her last year of life, my mother was under the impression that she was 6 years old, so often times the things I had to do for her were as if I were her mother or grandmother. She would often call me either mother or grandmother when I was caring for her. Objectivity is being able to look at what is happening in context to try to avoid issues such as anger. Caregivers need to accept the parts of what they need to do for a parent as a part of the responsibility of taking care of that parent. There are many different levels in caregiving, but if you are the primary caregiver, you have to get over the pieces that you might personally object. For many people this includes things such as toileting.
Coping with Decline.
There is personal meaning also in terms of loss of ability of taking care of oneself while participating. I think those of us in occupational therapy often understand the concept that completing ADLs makes a difference for them in their ability to complete what they need to complete. That is meaningful and important. The personal meaning of being able to continue with sequences such as getting up, getting washed, dressed, taking care of your oral hygiene. An example is a man shaving. Sometimes just handing the person the piece of equipment starts the motor process and they are able to do more over time. Loss of insight can occur when there is an inability to see or recognize that the person you are caring for is declining. The caregiver may try to keep that person in mind as being at the same level as they were before they experienced the decline. This can affect patient safety in the long term. It can be difficult to recognize this and then cope with it. Coping with decline is difficult because many of us offer care with the thoughts that the person will improve or continue to sustain their current level of functioning. When you are taking care of someone and they are dealing with illnesses that lead eventually to death, then there will be a decline. It is a matter of being able to move forward despite whatever obstacles you are encountering.
Caregiver Addressing End of Life Issues.
Caregivers need to recognize that the time has come to make serious life decisions. I will talk a little bit in further and the presentation about issues such as living wills and proxies, and that type of information.
Continuum of Caregiving
The continuum of caregiving can be from low to high intensity.
Low intensity. Low intensity may be that you are serving in a supervisory type of a caregiving arrangement where someone else is doing the primary caregiving or staying with a person most of the day. That can be somewhat low because you might be called upon to help to make decisions, but it is not that you are spending the bulk of your time one on one with a person receiving care.
High intensity. This is really where the person becomes dependent upon you as a caregiver for all or most of their personal care. That can mean feeding, washing and dressing, and toileting them. It can be a major and intense experience that requires stepping away from one's own life, social circle and employment.
