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Basically, I think we have to have them change their whole structure ...

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Basically, I think we have to have them change their whole structure ...

    Family Caregivers Self-Awareness and

    Empowerment Project

    A Report on Formative Focus Groups

    FINAL Report

    September 2001

    Conducted for

    The Family Caregivers Self-Awareness and Empowerment Project

    A joint program of

    The National Family Caregivers Association and the National Alliance for Caregiving

    by

    Lake Snell Perry & Associates

    1726 M Street, NW, Suite 500

    Washington, DC 20036

    202-776-9066

Family Caregivers Self-Awareness and Empowerment Project ; Report on Formative Focus Groups ; Page 2 of 32

FINAL 9/01

Lake Snell Perry & Associates

    Introduction .................................................................................................. 1

    Executive Summary ..................................................................................... 3

    Detailed Findings ............................................................................................ 8

I. Caregivers‟ Disconnect from Caregiver Terminology ................................. 8

     The Term “Caregiver” .............................................................................. 8

     The Role Doesn‟t Need a Name ............................................................. 11

     Participants are Uneasy about Being Grouped or “Labeled” ................... 13

     Does Acknowledgement Mean Empowerment? .................................... 15

    II. How Caregivers See Themselves And Their Role .................................. 16

     Who Becomes a Caregiver, and Why ..................................................... 16

     A Note on Gender ................................................................................. 17

     Feelings about the Caregiving Role ....................................................... 18

    III. Barriers to Empowerment and Self-Help ............................................... 20

     The Loved One Comes First .................................................................. 20

     Not Realizing Help Is Available ............................................................. 20

     A Private, Family Matter ......................................................................... 21

     Self-Care ........................................................................................................ 21

     Reluctance to Ask for Help .................................................................... 22

     Seeking Help at a Group Level .............................................................. 24

     Messengers Matter ................................................................................ 25

    IV. Parents Are Different ............................................................................ 26

     Caregiver Doesn‟t Cover It .................................................................... 26

     Parent Caregivers Are More Self-Aware ...................................................... 26

     Parents Are More Open to Help, Advice and Support… ........................... 27

     …But Self-Care Is Still Not a High Priority for Many .......................... 28

     Parents‟ Ideas about Why Others Are Reluctant .................................... 29

    Strategic Summary ...................................................................................... 30

     Reaching Caregivers .................................................................................... 30

     Promoting Caregiver Empowerment ............................................................. 31

Family Caregivers Self-Awareness and Empowerment Project ; Report on Formative Focus

    Groups ; Page 1 of 32

    FINAL 9/01

    I n t r o d u c t i o n

    In May of 2001, Lake Snell Perry & Associates (LSPA) conducted a series of five focus groups with family caregivers for the Family Caregivers Self-Awareness and Empowerment Project, a joint program of the National Family Caregivers Association (NFCA) and the National Alliance for Caregiving (the Alliance).

    The Family Caregivers Self-Awareness and Empowerment Project seeks to counter family caregivers‟ lack of self-awareness and reluctance to seek

    assistance through a comprehensive communication campaign aimed at changing the way these caregivers perceive themselves and their role. Ultimately, the project seeks to ensure that family caregivers recognize that their role is distinct and vital, acknowledge the demands of this role, reach out for help, and become their own advocates.

    These focus groups are the formative research phase of the Project, the purpose of which is to lay the groundwork for future work and message development. In these groups, LSPA explored barriers to caregiver self-awareness, as well as barriers to self-empowerment in the sense of recognizing the role and its

    demands, and working to help themselves deal with these demands. The groups also served as a forum to hear the language and terminology caregivers use themselves, and are comfortable with, in talking about themselves and their caregiving role.

    In reviewing these findings, it is important to keep in mind that focus groups are a form of qualitative opinion research. They produce information about the texture of people‟s attitudes, beliefs, perceptions and opinions, rather than quantifiable,

    generalizable data. Data collected in focus groups cannot be assumed to represent the views of the population at large.

    To gain a comprehensive understanding of these issues, it was important to hear from a variety of family caregivers. Groups were designed to include a mix of:

     New caregivers as well as long-time or “career” caregivers

     Ongoing and past caregivers

    Lake Snell Perry & Associates

Family Caregivers Self-Awareness and Empowerment Project ; Report on Formative Focus

    Groups ; Page 2 of 32

    FINAL 9/01

     Caregivers who vary as to the extent and intensity of their caregiver

    duties that is, whether they are involved in assisting their loved one

    with just a few Instrumental Activities of Daily Living (IADLs) such

    as grocery shopping, helping with paperwork, housekeeping and

    doctor‟s appointments, or the full range of Activities of Daily Living

    (ADLs) such as bathing, dressing, feeding and toileting.

     Relationship to the person for whom they are caring

     Level of acknowledgement in terms of self-identifying with the 1“Caregiver” designation when undefined

A total of five groups were conducted, broken down as follows:

Group Site Date Group Description

    Career, Ongoing, and Former 1 Acknowledged Caregivers Baltimore, MD 5.16.01

    2 New, Non-Acknowledged Caregivers

    3 Los Angeles, CA 5.24.01 New, Acknowledged Caregivers

    Caregiver Parents of Children with 4 Special Needs Kansas City, MO 5.31.01 Mixed Acknowledged and Non-5 Acknowledged Caregivers

    Focus group participants explored topics by means of two methods. Participants initially discussed topics on their own that is, without the aid of any materials

    so that we could see whether they raised, and how they talked about, the issues in question. Subsequently, participants read and responded to prepared materials which allowed us to explore their reactions to additional language and topics, including some ideas they had not raised on their own. Specifically, participants read and reacted to 1) a detailed definition and description of family caregivers (reprinted on page 10) and, 2) NFCA‟s Four Principles Of Caregiver Empowerment (portions reprinted throughout).

     1 Acknowledgement was measured using the structure from AARP‟s Caregiver Identification

    Study (February 2001). In the screening process, potential participants for the non-parent groups were first asked: “Are you currently a caregiver for an adult family member or friend?

    Regardless of their response, they were then asked: “Do you have an ill or disabled adult relative or friend whom you care for on a regular basis? This could be someone who just needs a little help, someone in declining health, or someone who is seriously or chronically ill.” Acknowledged

    caregivers are those who answered yes to both questions. Non-acknowledged caregivers answered

    no or don‟t know to the first question and yes to the second (this group corresponds with the group the AARP survey calls “actual caregivers.”)

    Lake Snell Perry & Associates

Family Caregivers Self-Awareness and Empowerment Project ; Report on Formative Focus

    Groups ; Page 3 of 32

    FINAL 9/01

    E x e c u t i v e S u m m a r y

    The focus group results provide a great deal of insight into how caregivers see themselves and their role, and the barriers to acknowledgement and empowerment. The groups also provide valuable information about language that will be vital in crafting messages targeted to caregivers.

Caregivers’ Disconnect from Caregiver Terminology:

     Focus group participants are not very familiar or comfortable with the

    terms "caregiver" and "family caregiver." Despite the fact that they

    clearly play this role, few self-identify as caregivers in an immediate or

    enthusiastic way. While those who identify themselves as caregivers do

    tend to be more involved in “heavy duty” caregiving, many of those who are

    “non-acknowledged,” are very involved, intensive caregivers.