Using the Connecting Process to Meet Family Caregiver Needs SHIRLEYR. RAWLINS, RN, CS, DSN*
lndlviduals who engage in caregiving responsibilities for dependent family members in the home setting face challenges that are little understood by others outside the circle of care. Because a large portion of energy Is devoted to caregiving tasks, caregivers potentially fail to devote attention to meeting their own needs. The purpose of this study was to develop a beginning substantive theory describing the needs perceived by caregivers and the processes by which these careglvers are able to get their lndivldual needs met. Grounded theory methodology was used to facilitate the identification of these needs and processes. This study concluded that the needs for help, hope, and happiness are the most crucial needs of family careglvers. The basic social process of connecting was identified as fundamental to meeting caregiver needs. Subprocesses of mlsconnecting and disconnecting were identified as concurrent processes that existed as functions of connecting and that affected the connecting process. The connecting process was seen as an organizing concept that could both give direction to the practice of nursing care for caregiving families and lay the foundation for continued research and theory development. (Index words: Connecting; Misconnecting; Disconnecting; Family Needs; Caregivers) J Prof Nurs 7:213-220, 1991. Copyright 0 1997 by W.B. Saunders Company
need for theory egiver
are the needs reported
(2) Are those needs being
are the basic processes
direct care to families, especially in psychiatric and community settings. If nurses are to be effective in the delivery munity,
of services to families efforts
in the com-
focus on the holistic
met? (3) What
by which caregivers
in this study
there are basic processes for getting common
to all groups
of the nature searcher’s analysis
of the caregiving
needs met that are caregivers
tasks, and (2) the re-
own life experiences
and theory development. Definition
Three major terms were used in this research study. Needs are tangible
states of being perceived ual to be necessary
or nontangible and reported
by an individThe
people who engage
f arnz ‘IY’1s a g rou P o f’ Interdependent
in tasks aimed at eliminating in providing
psychosocial, URSES have long been involved
to family questions
in the family.
Basic processes are
used and reported
by most individ-
uals for achieving
explain a considerable portion dividuals (Glaser, 1978).
of the behavior
needs of those family systems and how those needs are met.
to how family
their needs met has not been described such a way as to formulate retical
in the home
of a theofor
of the established
*Associate Dean, Georgia Baptist School and College of Nursing, Atlanta, GA. Address correspondence and reprint requests to Dr Rawlins: Georgia Baptist School and College of Nursing, 300 Blvd, NE, Atlanta, GA 303 12. Copyright 0 199 1 by W.B. 8755-7223/91/0704-0009$03.00/O
Journal of Professional Nursing,
Vol 7, No 4 (July-August),
Acknowledged time restrictions presence of a tape a potential lack These limitations and the resulting
of this study
for data collection and analysis, the recorder during the interviews, and of generalizability of the findings. may have influenced data collection formulation of an emerging theory.
The qualitative approach to this research study was guided by grounded theory methodology and family 1991:
SHIRLEY R. RAWLINS
systems theory. a theoretical
using information jects (Glaser,
from the data
from the life experiences
of the sub-
group in which anything
ber would influence & Enestvedt,
with the primary
the whole family (Lapp, Diemart, of grounded
framework of family
of explanatory 1986).
A beginning research.
review was done to provide
of reference for the conduct
major bodies of literature systems
The concept in the nursing
of the study.
as well as in writings
other social science disciplines. general
ture, and organizations,
as well as the effect of change
1 2 3 4 5 6 7
also served as
on specific types of caregivers and for the family
the researcher’s local community caregiving study.
and other demo-
for choices of sampling
was accomplished through oneinterviews with family caregiver
were interviewed questions
and adults in the
together to guide
a set of
disease. These authors im-
process was the only common-
Data collection time, tape-recorded
who were engaged
of the elderly,
and of chronically
and those with Alzheimer’s
sample of seven families (Table
groups in their own homes. Children
related to family caregivers
of social support
the health and coping
of its members.
by nurse researchers
sources as the concepts in
for this study.
made such a sig-
unit as a whole should
on the health outcomes understand
than a de-
were not controlled.
that the family
order to effectively
graphic or process variables
Nurse authors and oth-
the family context
focused on basic dom-
data with an identification
Nurse researchers have
and crisis on family dynamics. ers who examined
on family caregivers.
of the family as a system was prevalent
ysis facilitated A preliminary
data for the purpose
erated from the data rather than from the literature previous
allowed for the col-
lection and analysis of qualitative
and family systems theory provided
data from this group
of needs in family
rather than instrumental
the family as an interdependent,
1990). A combination
of a multitude
1978). Family systems theory offered an
plied the existence
The processes occurred
of data gathering
and data analysis
As data analysis of the tran-
Data Person Receiving Care
Caregivers (Age in Yr)
Husband (35) Daughter (8) Father (50) Mother (49) Wife (58) Wife (57) Son (36) Grandmother (66) Daughter (60) Niece (73) Niece (76)
Attorney Student Salesperson Community service worker Retired secretary Real estate agent Corporate executive Retired nurse Unemployed Retired secretary Retired teacher
(Age in Yr) Wife (34) Daughter
Disability Back pain
Husband (65) Husband (62) Father Grandson (4) Mother (88) Aunt (101)
Retarded Disabled amputee Alzheimer’s disease Retarded Frail, elderly Frail, elderly
USING THE CONNECTING
scribed interviews applied
began, a system of open coding was
of the people interviewed.
pared and similar an initial sought
codes clustered Main
sons who were expected
Codes were com-
or core variables
dens of caregiving
spite as positive,
the data to a con-
data and the theoretical selected
and core categories
ships to supplement
A second search of
that was woven into the observed
and “at the top of the list of help from health
parent of a disabled
from every crevice.”
child shared that connections
to make with physicians
Less than adequate
they were “hemorrhaging
or relief from the bur-
in the area of teaching.
to offer this help. Caregivers
were named as those per-
the need for respite
and raise description
As the data were analyzed tified,
home, and family members
of the words and
memos served to connect
with the final analysis ceptual
because they did not
Establishment of Validity Face validity purpose
for this study
the degree to which
in the data. A questionnaire
the family caregivers
ships of the three identified
for the the truth
was sent to
needs with the processes
used to meet those needs. Caregivers were asked to open-ended manner to the respond in a narrative, summaries
offered and to offer further
for the findings.
the processes perceived
to meet those needs. This con-
offered a face validity
for the anal-
ysis of the data and for the relationships These families validation
agreed with the needs that were identified census of caregivers
Friends were identified as another source of help, but their involvement was perceived as being different from that of the family. visitors
desired. A total of five caregiving validation
Three recurring cafegiver needs emerged from the wealth of family interview data . . . help, hope, and happiness . . .
to be the best source of
experts were not consulted
in this process.
fered a different
with expressions and “God
such as “looking
One caregiver stated she “needed to hear that there was always hope, ” and another stated she did not ever want to be given
kind of help and
the need for hope.
in this study verbalized
there was a purpose
led to identification
offered hope from two sources: Three recurring
the family group.
uses these situations
second core variable;
Family Caregiver Needs
to the situation
but equally valuable
served to re-energize Family
a need to be
from God and from expressed
a belief that
help, hope, and happiness (Rawlins, 1989). The first core variable that emerged was the needfor help. Caregivers used such expressions as “doing more” with “not enough time.” Tasks were “heavy”
Caregivers used many negative words and expressions that indicated unhappiness. They spoke of “not
and in one case described as “more than I can stand.” Caregivers spoke of having to wear a “different hat” and to do things they had never done before. Caregivers’ roles were described as situations of “doing more” and “expecting more.” Caregivers needed help in giving direct care to the dependent person in the
being able to smile anymore.” Descriptions of birthdays without recognition, a loss of “life’s pleasures,” and having to “bypass what I want” were words that emphasized the need for happiness. Caregivers needed support in an expressive as well as instrumental nature, and caring rituals were valued
that God used these human tual faith.
SHIRLEY R. RAWLINS
as an important
link to happiness.
scribed the absence of caring rituals in her life and the subsequent
all other expressed
how her elderly
very evident caregivers
tions with viable, periencing
a meeting used
One family scribe
and the family. connec-
resources was crucial to ex-
of their perceived
that making holistic
they used for getting
was a lack of attention
to all family caregiving
Family caregivers recognized that making connections with viable, helpful resources was crucial to experiencing a meeting of their perceived holistic needs.
they first entered by many needs groped
they had made used
a misconnection was not helpful
by both the as to the
care professionals help to caregivers information.
in the way of providing
the story of how
shared these per-
My gynecologist came Poor thing, he didn’t hardly got his head in what was wrong with
in the door walking out. . . . know what to say to me. He the door. . A nurse told me the baby.
Caregivers would sometimes experience misconnections with friends and other family, thus making their efforts at seeking
help less productive:
was a process that occurred that was less than ideal and that prevented caregivers from connecting in helpful ways with other people. This was eventually labeled misconnecting and was seen as a process that frequently preceded connecting. Caregivers misconnected with help in assuming their
They gave no con-
such as “not knowing,” “missed ” “distasteful things,” and “too much
she first learned her baby had been born retarded
and often found with
The nurses who come out here come to take care of H’s foot. They won’t touch anything else. They come out here to take care of what they’re paid to come out here and take care of, and they don’t bother anything else. I guess they think if they do something and later it got worse, I would sue them. Sometimes I need advice about other things and it’s hard to get that advice, too. They call, they come, and then they leave.
and his wife, nor did they inquire
their roles as a period characterized
and were seen to operate as functions
to assist a wife in caring
to the depression
The processes of misconnecting and disconnecting
aspects of both the patient
In one situation,
lated parts of the family situation.
up” to de-
basic social process of connecting was later identified a major process common
to the holistic
came periodically recognized
The Meeting of Caregiver Needs caregivers
She consumed me. I felt like she just swallowed me whole. Everything I did revolved around her. When I did get together with my family, we talked about her until we finally realized what we were doing. We might as well be there with her as to have her dominate our lives even when we were away.
Even at Christmastime last year, not one person offered to let me go with them to a shopping center except my mother. . I didn’t even get Christmas (presents) last year; it was like another day. These
They just left it up to me to keep her. One sister told me she’d come every Tuesday to stay. She came twice and then called me to say that was the only day she could play cards with her friends and she wouldn’t be back.
Misconnections also occurred with sources of hope as caregivers struggled to make sense out of life’s circumstances. Even though they expressed faith in God to support them in their burdens, it was difficult for hope to be ever-present in their thinking. One care-
USING THE CONNECTING
her faith as sometimes
of a person from a situation.
hill like a glass of water. Caregivers
gentle honesty from other people, experienced
but they sometimes
with others as false hope
seen as a more definitive As caregivers many
One thing I don’t like, though, is the kind of people that tell me what they think I want to hear; ‘You’re going to do good’ or ‘It’s going to work out.’ And you know durn well you’re facing a really tough road ahead and it’s not as easy as people think. I don’t know if they’re trying to be soothing and saying the things I want to happen or whether they are unaware.
tasks in many
were so life-
that there was no time to pursue that afforded
wife of an Alzheimer’s
in a misconInvolvement
in the care of a disabled person enmeshed the caregiver in an involuntary connection that pulled that caregiver along in a negative
had disconnected One of the most
was offered by the son of an Alzheimer’s
By my observation, most of the people, family, friends, and such disappear. It’s almost like a cancer house because no one wants to come around. . . . The net effect on the family is that the caregivers are in isolation. Not only do you have a problem, but you’ve got it by yourself.
Taking care of a sick person in the home is no easy job . . The part that is devastating is the heartbreak of seeing someone you know and love not know your name. We were driving along the street and he looked over at me and asked, ‘Where do you live? Do you have an apartment?’ Then he realized what he had said and he broke down and started crying. . It was a horrible thing to see the strength of the family in a position where he was crying.
process than misconnecting.
with certain resources and situations.
It’s impossible to keep your own mind if you’re continually subjected to nothing but a demented person. . . When a person is degenerating and you’re taking it on, you’re going the same way they aredownhill, too.
Whenthe cafegivers came to the realization that their needs were not being met, they engaged in a process of withdrawing from that nonsupportive of draining relationship and sought other ways to cope.
in the lives of caregivers
whelming caregiving need for relief:
were made with
role. One caregiver
You just have to have some relief. There’s no other way you’re going to make it. . You have to have it because you do it 24 hours a day for every day of your life. Even if you love a person dearly, you just need some time away from that routine or you will go bonkers.
One of the most devastating When the caregivers came to the realization that their needs were not being met, they engaged in a process of withdrawing from that nonsupportive or draining relationship and sought other ways to cope. Caregivers shared how a person’s “mind was gone” or how people “just stay away.” They talked about “escape” being critical at times and how friendships would “disappear.” These phrases pointed to another process that was occurring that was characterized by a definite separation of one person from another or the
types of disconnection
occurred as some caregivers experienced the gradual, irreversible slipping away of the body, mind, and spirit of the person for whom they were caring. The wife of an Altheimer’s victim described her disconnection with her deteriorating husband through writing a poem that described her pain and broken heart, and the slow death of her love for him. She asked why God could leave a man’s body but take his brain. Although many examples were found to illustrate how caregivers disconnected from sources of help and
SHIRLEY R. RAWLINS
of a disconnection
As bleak as some of the situations
hope was still caregivers.
alive in the hearts
the course of each caregiver’s
As the caregiving happiness
Caregivers and missed
gled to deal with cumstances
from their spouses and strug-
of the mar-
riage . One of the most distressing was a caregiver’s
shared the importance
of his friends
I had friends who were not associated with this family
tasks became more life-consuming,
in this respite process:
ence, there were times when these individuals themselves
that she needed time alone-a
or an hour to do exactly what she wanted
were, of the
Hope had not died.
was, she answered
who helped me and probably saved my life. I probably would have jumped off a building somewhere if it weren’t for my being able to go outside this household. That escape was critical. Friendship relationships are critical.
hope was a basic need for family care-
and they connected
ways: through with people.
in two basic
with God and interactions
for a purpose
in the situation
was part of the process of connecting
sources of unhappiness
self. Needs or desires for self-fulfillment for lack of a means to participate
Maintaining hope was a basic need for family caregivers . . .
or a lack of energy to
invest: The more I had to look after him, the less I was able to be my own person. I gave more of me over to his needs and there was less of me to do anything else.
giver happiness to the amount A final process
that was related
the processes of misconnecting and disconnecting, but that was more positive in enabling caregivers to get their needs met. Descriptions of “family support” that “made things go easier,” church friends who did “precious things, ” and “connecting trated tant. doing
how contacts Further
up” with others illuspeople
such as “believing
in the caregivers’
was the final
of love and concern
by other people.
who accepted her regardless
of how many wrinkles
out a need for coming
to an Help,
were the three
the self. This was labeled
to enter into relationships
The process of connecting was conceptualized as creating a bond of relationship, cooperation, or mucould be intentional
and was the basic social process that en-
to realize a fulfillment
had or how well her hair was combed.
about herself and how people who loved her shared that love. Those from whom she felt love were those
needed to be made, either with other people or within
tual effect. Its occurrence
inner peace. All of these descriptive phrases and coded words indicated a process by which a connection the connecting
lives. The degree of care-
of their needs
for help, hope, and happiness. Connecting with needed help was accomplished many ways. Caregivers learned that lay people could master technical skills and could function well in assisting a patient when they were informed and aware. Connections with help through respite opportunities were treasured by caregivers. When one daughter caregiver was asked what her greatest personal need
were used in attempts
a connecting process enabled
to get these
with others to
receive the proper help and to hear the words of hope and
These connections in a realization
of the pleasures
and beauty life had to
offer. Circumstances that robbed people of control and critical thinking ability led caregivers to make misconnections with sources that were only a mirage of help. These bonds were fruitless in that they offered little source of help or hope, and they brought frustration and sadness rather than happiness. Disconnectionsoccurred that could be perceived as helpful, painful, or both. This process had the potential to enable care-
USING THE CONNECTING PROCESS
ness in caregivers and concern
needs to be met.
bers in recognizing met.
and assist families
IMPLICATIONS FOR THEORY DEVELOPMENT ANDRESEARCH
the process of
that are so painful, connec-
tions that will enable them to realize help, hope, and Nurses can offer crucial help to family caregivers to sustain
and to strengthen caregivers
ious community their facilities
to care-giving resources
series of presentations aimed at providing
the most po-
to go for inspiration
for the development 1984).
in this study,
of this study
Use of the findings
and theory caregiving
in more in-depth
has raised several questions
research: (1) How does the nzrrse’s need for help, hope, and happiness
affect his or her ability
needs in caregiving to meeting health connect
to meet these
(2) Do the processes of
such as tertiary of assisting
apply in other
resources that are more effective in this study?
This study has provided lationships between needs suggested and the resulting to several additional
possibility.” Nurses can offer caregivers hope in the form of sharing possibilities, not statistics.
caregivers, it is important that the individual caregiver’s spiritual faith be encouraged. Faith in God was a common theme in this study of caregiver needs and this faith was the basis for hope. Caregivers described one facet of their happiness as that of being loved and accepted by others. Nurses, too, can promote happi-
process that is useful in meeting
have the opportunity
for practice and research would enable pronurses to engage
1,459) stated, “While others seek cures, nurses seek the compromises that infuse daily life with
and to search for more effective and
of their own caring nature (Westthe effectiveness
and hope, the healing peace,
there is a need to
ways to make nurses’ involvement
than those suggested
a place for individuals
All of these activities
and could facilitate As related
and in the home setting,
of all are the local church, temple, or synaThese religious institutions could not only of-
fer their facilities
for a nonprofit
Community tential gogue.
a need for educational
nurses or other professionals information
to offer this affective sup-
that serve to
to get their
can assist with the necessary
tions or support inevitable
in home health care activities
have special opportunities
There are ways that nurses can assist family memfrustrate
raises the family’s
Nurses who are engaged IMPLICATIONS FOR NURSING’S INVOLVEMENT WITH CAREGIVERS
that are conducive
of the scope of these ideas
of these concepts to caregiver
and processes have been discussion has given rise
and the application
look at one basic
may offer nurses needs
for needs satwould then en-
able nurses to strive for the ideal vision
Chinn (1989): a vision of individuals having the resources needed to make meaning of their lives, to participate in their own patterns of seeking health, and to resist that which would diminish their own health.
References Chenitz, W., & Swanson, J. (1986). From practice grounded
Menlo Park, CA: Addison-Wesley.
Chinn, P. (1989). Nursing patterns of knowing and feminist thought. Nlrrsing and Health Care, 10(2), 7 l-75.
Glaser, B. (1978). Theoretical Sensitivity. Mill Valley, CA: Sociology Press. Lapp, C., Diemart, C. A., & Enestvedt, R. (1990). Family-based practice: Discussion of a tool merging assessment with intervention. Family and Community Health, 12(4), 2 l-28. Mallison, M. (1988). To our president elect (editorial). American Journal of Nursing. 88, 1458.
SHIRLEY R. RAWLINS
Rawlins, S. (1989). Connecting: Meeting the Need of Family Caregivevs. Unpublished doctoral dissertation, University of Alabama at Birmingham. Stern, P. (1980). Grounded theory methodology: Its uses and processes. Image: Journal of Nursing Scholarship, 12(l), 20-23. Westberg, G. (1984). Churches are joining the health care team. Urban Health, 13(9), 34-36.