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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.

     Most participants, including those who identify more readily with the

    caregiver label, are ambivalent about the term; some simply do not like

    it. Many associate the word “caregiver” with a paid caregiver, which has

    negative connotations. Moreover, they are hesitant about using the term to

    describe their role because they feel it does not speak of the love and

    warmth involved.

The term “family caregiver” is a little more well-received than

    “caregiver.” Participants feel adding the word “family” softens the term.

    However, people are less familiar with the term “family caregiver” and so

    use it awkwardly or not at all in their own speech.

     Many participants are reluctant to give any name or title to what they

    do. Many especially those caring for spouses or parents say what they

    do is “what families do” for each other naturally. Therefore, they are

    reluctant to think of caregiving as a separate role, distinct from “spouse” or

    “child.”

Other participants object to “labeling” the role for other reasons. Some

    say they feel no need to or actively resist the idea of having a name, or

    belonging to a group. Some fear it will become what defines them, blocking

    out their other selves. Still others feel looking for a title is simply a way to

    congratulate oneself for doing what they should be doing anyway. Lake Snell Perry & Associates

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

    Groups ; Page 4 of 32

    FINAL 9/01

     Strategic Implications

     Because caregivers are reluctant to embrace the caregiver label, it is important

     to work to change people‟s image of that word. It might be advisable to use

     “family caregiver,” as opposed to just “caregiver,” and work to raise

     awareness of this less familiar but potentially more acceptable term. It

    also seems important to stress that this label is not meant to supersede other

    roles caregivers play, it is just one of many ways to describe what they do for

    an ill loved one. Lastly, it is also important to reach out to caregivers without

     relying too heavily on the caregiver label.

How Caregivers See Themselves and Their Role:

     Understanding how caregivers see themselves, and how they see

    themselves within their caregiving role, is important in crafting

    messages. Most describe themselves as loving and nurturing. Most also

    say they took on this role because they have the right personality; they are

    assertive, take-charge types. There are a few caregivers, however, who feel

    they are caregivers less because of personality than pure circumstance.

    Simply put they are the “only one” – the spouse, the only child, or the only

    relative living nearby.

     Participants differ as to how they view and react to the demands of

    caregiving. Because it is seen as natural, many are reluctant to

    complain at all about their caregiving role. Some feel guilty and are

    hesitant to say that they feel victimized or taken advantage of. After all,

    they stress, this is “just life.” These individuals must be approached gently.

    They have to be reminded that just as their role is natural, so is feeling

    overwhelmed or resentful about it. Those who took on the role more

    willingly are somewhat less likely to feel openly resentful, but they may be

    more hesitant to ask for help.

Strategic Implications

    How and why people feel they came to be caregivers seems to influence

    how they feel about the role and how open they are to accepting help.

    Messages must be targeted or take into account both willing and more

    reluctant caregivers.

Lake Snell Perry & Associates

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

    Groups ; Page 5 of 32

    FINAL 9/01

Barriers to Empowerment:

    Beyond this disconnect from current caregiver terminology, there are additional barriers to empowerment and self-help. Even some of those caregivers who are most aware and comfortable in their caregiving role are reluctant to take steps to support themselves in this role.

Caregivers focus on their loved one, not on themselves. In general, most

    caregivers see caregiving as a role they play vis-à-vis their loved one, not

    something they need to support themselves in doing. Many say they are

    “putting their own lives on hold” to care for their loved one and will

    “balance it out” later.

     Many caregivers are hesitant to share duties with other family members.

    Participants are reluctant to seek help with their caregiving duties even

    from other family members for many reasons. Some feel that no one can

    care for their loved one as well as they do, and so feel guilty leaving their

    loved one with anyone else. Others feel they have no one to ask for help, or

    are waiting for people to volunteer.

Most caregivers are unfamiliar and uncomfortable with outside services.

    Participants are especially resistant to the idea of receiving respite services

    from an outsider. Few were aware that such services are even available, and

    most assume that they would have to pay someone to provide this service.

    Many argue that their loved one would not feel comfortable having a

    stranger care for them. Many say they would not feel comfortable using a

    respite service to do something “just for themselves,” and would only use

    such services to get things done like shopping or laundry.

     Caregivers are reluctant to discuss their caregiving responsibilities at

    work. Some of the caregivers have talked with their employers about the

    affect caregiving has on their work lives, and many have found their

    employers to be supportive and flexible. However, this is not always the

    case. Some are reluctant to talk with people at work about their caregiving.

    A few say they have harmed their careers or even had to give up jobs

    because of their caregiving role.

Many caregivers are reluctant to talk about or even speculate on

    whether or how caregiving affects their own health. They admit to

    feeling tired and stressed, but few talk of other effects. Only a handful have

    talked to a doctor about their caregiving. On the other hand, a few say they

    have been clinically depressed or physically ill as a result of caregiving.

Lake Snell Perry & Associates

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

    Groups ; Page 6 of 32

    FINAL 9/01

There is little or no awareness of caregiving organizations. Few

    participants have heard of NFCA, NAC or any other caregiver organization;

    some are surprised to hear such organizations exists. And, just as

    participants are reluctant to view themselves as caregivers, so to are they

    resistant to the idea of joining a group of caregivers be it a national

    organization like NFCA or a local support group. Many question what the

    benefits would be in being part of a group. Some believe you cannot learn

    to be a caregiver; you “either know how to do it or you don‟t.” They also

    feel such groups would just be an arena for people to complain, or a place

    people go for recognition, or a “pat on the back” which they do not need.

    Lastly, they see this as a private role, and simply do not think about their

    “rights” as caregivers in the public sphere.

    While there are significant barriers to self-awareness, there are some who have crossed the barrier emphatically to become empowered. There is a

    strong, vocal minority of caregivers who do appreciate the need for time away, and stress the need for a separate existence and identity from that of caregiver. They have scheduled their lives, to the extent possible, to have time on their own or with other family members. Some view their work as a refuge, others meditate, go to the gym, or have scheduled “nights out.” They value their time away and encourage others in the group to take time for themselves. Taking a break, they argue, makes you a better caregiver.

     Strategic Implications Most caregivers, if they are looking for help or advice of any sort, are interested in how they can do a better job as a caregiver or improve their loved one‟s quality of life. This suggests that the best way to approach caregivers is to start by talking about caregiver resources, ways to help the person for whom they are caring, and improving themselves as caregivers. Then, you can talk about making things better for themselves, focusing on the fact that getting the help and support they need, and taking time for themselves, will make them better caregivers.

Lake Snell Perry & Associates

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

    Groups ; Page 7 of 32

    FINAL 9/01

Parents Who Are Caregivers Are Different:

     The participants in our focus group of parents are different from other

    caregivers in how they view themselves and their role. While these

    parents too are somewhat ambivalent about the term “caregiver,” they are

    more aware of the uniqueness and special demands of their role as the

    parents (or grandparents) of children with special needs. Those whose

    children need a great deal of care are especially enlightened in this regard.

    In general, they see themselves as part of a group with special concerns and

    needs, and they feel that to do the best possible job as parents they must

    recognize these special needs.

     For the most part, these parents talk more easily about feeling

    overwhelmed and resentful on occasion, and recognize the need for self-

    care and respite opportunities. Even while they stress this, they

    appreciate and value their role.

     In short, parent caregivers are different. They seek out and have a

    connection to other caregivers. Perhaps it is because they believe they are

    in such an unusual situation i.e., most other parents have healthy children

     that they seek out parents like themselves. A spouse or adult child caring

    for an aging parent, on the other hand, may not feel so different. Rather,

    they see their caregiving simply as part of their spousal or child role and

    so are much less likely to look to other caregivers for support.

Strategic Implications

    Family caregivers are a diverse group. Parents of special needs children

    are generally different from spousal caregivers and adult child caregivers

    of parents. Parent caregivers tend to be more aware of their extraordinary

    role and its demands. There is a lot to learn from this group especially

    those we talked to about embracing the role while realizing its demands

    and getting help.

Lake Snell Perry & Associates

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