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Journal of Family Social Work

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It Should Have Been Happening To Me: The Psychosocial Issues Older

Caregiving Mothers Experience

Victoria H. Raveisa; Sheindy Prettera; Monique Carreroa

a
Psychosocial Research Unit on Health, Aging and the Community, New York University, New York,
New York
Online publication date: 18 March 2010

To cite this Article Raveis, Victoria H. , Pretter, Sheindy and Carrero, Monique(2010) 'It Should Have Been Happening To

Me: The Psychosocial Issues Older Caregiving Mothers Experience', Journal of Family Social Work, 13: 2, 131 148
To link to this Article: DOI: 10.1080/10522150903503002
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Journal of Family Social Work, 13:131148, 2010

Copyright # Taylor & Francis Group, LLC
ISSN: 1052-2158 print=1540-4072 online
DOI: 10.1080/10522150903503002

It Should Have Been Happening To Me:

The Psychosocial Issues Older Caregiving
Mothers Experience
VICTORIA H. RAVEIS, SHEINDY PRETTER, and
MONIQUE CARRERO

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Psychosocial Research Unit on Health, Aging and the Community,

New York University, New York, New York

The occurrence of cancer is an event of significant importance to

family functioning. The present analysis reports on an understudied group profoundly affected by this health event: older mothers
caring for an adult child with cancer. As part of a study of breast
cancer survivors and their family caregivers, a subsample (N 13)
of older caregiving mothers (mean age 68) participated in focused
interviews. The interviews, conducted in English or Spanish, were
audio-taped, transcribed, and subjected to content analysis.
Analyses of the mothers accounts elucidate complex psychosocial
reactions to their adult daughters cancer diagnosis that are
informed by life-cycle considerations. These reactions, which
include a reawakening of maternal behavior, a need to come to
terms with the asynchronous nature of their daughters health
event, and an intense feeling of personal responsibility, illustrate
the need for family-centered care in oncology.
KEYWORDS adult daughters, breast cancer, caregiving, family
centered, motherdaughter relationship, parent caregiver, personal
vulnerability

This study has been funded by grants from the Department of Defense, Breast Cancer
Initiative, DAMD17-00-1-0215 and the New York State Breast Cancer Research and Education
Fund, NYS DOH C017945.
Address correspondence to Dr. Victoria H. Raveis, Psychosocial Research Unit on Health,
Aging and the Community, New York University College of Dentistry, 380 Second Avenue,
Suite 301, New York, NY 10010. E-mail: victoria.raveis@nyu.edu
131

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V. H. Raveis et al.

When a family member becomes ill, the ramifications of the illness are
experienced throughout the family system. Over the last few decades, an
expanding body of family-based research has been documenting the impact
of cancer on the family (Baider, Cooper, & Kaplan De-Nour, 2000; Dorval
et al., 2005; Mitschke, 2008; Ponto & Barton, 2008). These efforts have
informed the growing movement for a paradigm shift from a biomedical
model of care to one that is patient and family centered (Kelly, Reinhard,
& Brooks-Danso, 2008; Rolland, 2005).
Families face a set of psychosocial challenges imposed by their relatives
cancer including coping with uncertainty, dealing with illness-related losses,
and adapting to the changes engendered by the cancer and its treatment
(Raveis, 2007). Investigations have found elevated levels of emotional and
psychological distress among family members (Ferrario, Zotti, Massari, &
Nuvolone, 2003; Matthews, Baker, & Spillers, 2003; Mitschke, 2008; Raveis,
Karus, & Siegel, 1998; Raveis & Pretter, 2005a; Toseland, Blanchard, &
McCallion, 1995), sometimes higher than that of the cancer patients themselves (Gilbar & Rephaeli, 2000; Northouse, Mood, Templin, Mellon, &
George, 2000). Family members may experience a period of crisis fraught
with severe emotional distress and life=death concerns upon learning of their
loved ones cancer diagnosis, which parallels the existential plight cancer
patients encounter following their diagnosis (Raveis & Pretter, 2005b).
A relatives cancer diagnosis may also be indicative of heightened susceptibility to the disease in the family. Family members learning of their relatives illness may be simultaneously confronted with their own increased
cancer risk. Women with one first-degree relative with breast cancer have
almost twice the risk of the disease compared to those with no family history
of breast cancer. Women with two first-degree relatives have almost three
times the risk (Collaborative Group on Hormonal Factors in Breast Cancer,
2001; Metcalfe et al., 2009). Investigations have documented that women at
increased risk for breast cancer due to a family history of the disease have
heightened anxiety levels associated with their risk status (Kash, Holland,
Halper, & Miller, 1992; Lerman et al., 1993). Some women, who are at
increased risk for breast cancer, experience a paralyzing sense of
cancer-related worry that severely affects their ability to function on a daily
basis (Lerman et al., 1993).
As in other illness situations, the family is integral to the care and
support provided to persons receiving treatment for cancer (Schumacher,
Stewart, Archbold, Dodd, & Dibble, 2000; see reviews by Kotkamp-Mothes,
Slawinsky, Hindermann, & Strauss, 2005; Northouse, 2005). Family caregivers
assist cancer patients in dealing with the diseases physical and psychosocial
consequences, in addition to addressing any treatment-related needs. Their
care can encompass emotional support, financial aid, and the provision of
services ranging from instrumental aid and assistance with personal care,
to health care tasks and mediation with formal care providers (Raveis et al.,

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Psychosocial Issues of Older Caregiving Mothers

133

1998). With public policies and practice models shifting the focus of care to
outpatient settings and the community, there is widespread recognition of
the critical disease management and care provision tasks families perform.
This awareness has led policy makers and the health and social service
professions to acknowledge that family caregivers must be recognized as
partners in care (Reinhard, Brooks-Danso, Kelly, & Mason, 2008, p. 4)
and need to be supported in their care responsibilities (Given, Given, &
Kozachik, 2001; Rolland, 2005). Indeed, in 2008 the State of the Science
Symposium: Professional Partners Supporting Family Caregivers issued a
primary recommendation to develop and promote a patient- and familycentered service paradigm (Kelly et al., 2008, p. 9).
Family-centered care is vital to maintaining family functioning and
enabling families to sustain their involvement in disease management. Not
only can a diagnosis of cancer significantly affect the family (Pitceathly &
Maguire, 2003; Raveis & Pretter, 2005b), but a compelling body of evidence
has established that family caregiving imposes burdens and strains that may
further compromise family functioning (see review by Kim & Given, 2008).
The demands of caregiving compete with the day-to-day role responsibilities
of the family caregivers own life, particularly when care provision is
long-lasting or intense, as can occur with diseases such as cancer. Although
informal caregiving takes place within a family context, it can affect adversely
on the caregivers everyday life, impose strains on the broader family system,
challenge the caregiver, who has to balance the needs of the care recipient
with those of other family members, and necessitate major lifestyle changes
(B. A. Given et al., 2001; Kotkamp-Mothes et al., 2005). Studies have
documented a variety of emotional sequelae of caregiving for the familial
cancer caregiver, including increased levels of depression, anxiety, helplessness, hopelessness, emotional exhaustion, low morale, distress, feelings of
isolation, guilt, and anger (B. A. Given et al., 2001; C. W. Given et al.,
1993; Haley, LaMonde, Han, Burton, & Schonwetter, 2003; Kotkamp-Mothes
et al., 2005; Pitceathly & Maguire, 2003; Raveis et al., 1998).
Family members who are at increased risk for cancer may experience
additional stress caring for their relative with cancer. As caregivers, they
are afforded firsthand exposure to their relatives cancer experience.
Although this can serve to normalize or demystify the cancer experience
for the caregiver, the opportunity to witness their relatives treatment and disease difficulties may intensify their own fears and dread of cancer (Raveis &
Pretter, 2005b). Any anxiety and concern these caregivers may be experiencing about the risk of cancer for themselves or other family members can be
compounded by the distress and strain engendered by their care provision.
These familial caregivers are further challenged in that they must
simultaneously deal with their anxieties and concerns about their relatives
prognosis while integrating their reactions to their own risk status and the
uncertainty of their future (Raveis & Pretter, 2005a,b).

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V. H. Raveis et al.

The purpose of the current analysis is to inform efforts to advance a

family-centered service paradigm in cancer care. As informed by Rollands
Family Systems Illness (FSI) model (Rolland, 2005), the analysis incorporates
a systems perspective, examining the cancer experience within an individual
and family life-span perspective. Older caregiving mothers are the analytic
focus. They are an understudied caregiving group hypothesized to be
profoundly affected by this health event. Efforts to investigate and address
the impact of cancer in adults on the family system have mostly focused
on spouses and adult caregiving daughters (Dorval et al., 2005; Hodges,
Humphris, & Macfarlane, 2005; Mosher & Danoff-Burg, 2005; Northhouse,
Templin, & Mood, 2001; Oktay, 2004; Raveis, 1999; Raveis et al., 1998;
Wellisch & Lindberg, 2004; see review by Pitceathly & Maguire, 2003). Little
is known about the cancer experience in the extended family, and only
limited attention has been focused on older mothers caring for adult children
(e.g., Gilbar & Ben-Zur, 2002; Gilbar & Rephaeli, 2000).

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METHOD
Data on a subsample of older caregiving mothers were drawn from an investigation of family caregivers to breast cancer survivors. In-depth focused
interviews (Merton, Fiske, & Kendall, 1990) were used to obtain dense
description from the family caregivers about their cancer experience and provision of support. The protocol for the study was reviewed and approved by
an Institutional Review Board.

Eligibility Criteria and Recruitment

Eligible patientfamily caregiver dyads in the larger investigation consisted of
patients in active outpatient treatment for breast cancer whose caregiver was
a first-degree female relative (i.e., mother, sister, or daughter), age 18 or
older, who did not have a personal history of cancer, and who was involved
in providing practical assistance and=or emotional support to the patient
since her breast cancer diagnosis. Female breast cancer outpatients were
identified through an ongoing review of a major metropolitan hospital
centers admission and discharge records. The hospitals catchment area
includes diverse socioeconomic and racial=ethnic neighborhoods. Patients
were sent a letter notifying them of the study. The letter also contained
all the elements of informed consent. Following the mailing, a clinician
researcher telephoned the patients to discuss the study further, determine
their interest in participating, and confirm their eligibility. Interested eligible
patients were asked to nominate a first-degree female relative who was
involved in their care (i.e., provided them with informal support and assistance). With the patients permission the caregiving relative was then

Psychosocial Issues of Older Caregiving Mothers

135

contacted, via letter and follow-up phone call, to discuss study participation.
Only those patientcaregiver dyads in which both members were willing to
participate were accrued.

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Data Collection Procedures

Family caregivers met once with a clinician interviewer for an in-depth,
focused interview (Merton et al., 1990). At the onset of the research
meeting, signed informed consent was obtained. The focused interview
lasted on average 1 hour and was conducted in English or Spanish. A
bilingual interviewer conducted the Spanish interviews. The interviewers
were female social workers or health educators who had been trained for
the study in focused interviewing techniques. Throughout the focused
interview, family caregivers were encouraged to talk spontaneously,
determine the flow of the interview, and introduce any issue they considered relevant to the cancer experience. The clinician interviewers
facilitated the flow of information through neutral prompts and by
focusing on general topics or issues, probing only to encourage
elaboration or clarification (Merton et al., 1990). This process enabled
the family caregivers stories to emerge on their own, in context, eliciting
their personal frame of reference with minimum input or influence
from the interviewers (Denzin & Lincoln, 1994). The discussion covered
a variety of topics, including their reactions to their relatives cancer
and its treatment, the circumstances leading to their assumption of caregiving, changes in their relationship with their ill relative since the illness,
their assessment of the ill relatives support needs, their caregiving
experiences, and their perceived vulnerability to cancer. With permission
the family caregivers interviews were audio-taped for transcription and
analysis.

Qualitative Analysis
The audio-taped caregiver interviews were transcribed verbatim into
computer text files and subjected to content=thematic analysis (Miles &
Huberman, 1994; Polkinghorne, 1989). This allowed for the systematic
identification of topics of discourse (themes) present in the caregivers narratives and the specification of relationships among these themes and=or with
contextual factors (Atkinson, 1998; Polkinghorne, 1989).
An iterative process of analysis was followed in which the investigative
team read, reread, and discussed a randomly selected subset of the interview
transcripts to develop an initial set of codes that reflected a provisional conception of the factors likely to be of theoretical importance in understanding
the family caregivers cancer experiences. These initial codes emerged from
the caregivers narrative accounts and were further informed by prior

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V. H. Raveis et al.

research, clinical experience with patients, and their familial caregivers and
the extant literature. This coding scheme underwent further revision and
expansion as additional interview transcripts were read and coded. Through
this iterative process a set of core codes representing the phenomena of
central interest was developed. For each core code, subsequently one or
more secondary codes were established that represented either more specific or restricted aspects of the phenomena. These secondary codes served
to contextualize the phenomena and suggest underlying personal meanings.
Ultimately, the investigative team developed shared definitions of the core
and secondary cores and a common set of criteria by which to identify
and code them. This constituted the coding manual.
Two members of the research team independently read and coded the
interview transcripts on an ongoing basis. Interrater agreement of the codes
assigned was assessed on a subsample of interviews and was found to be
excellent (i.e., exceeding 90% agreement). Isolated coding discrepancies
were resolved through joint discussion and verification of the text with other
interviews having the same code. As the data gathering proceeded, the coding scheme (and manual) continued to be refined and expanded upon to
reflect and incorporate emerging insights from the focused interviews. Revisions to the coding scheme were also applied to interviews that were coded
earlier. Pertinent coded material was retrieved, stored in separate text files,
and subjected to content analysis. NVivo, a software package for the analysis
of qualitative data, was used to facilitate coding, text searches, and retrieval
(Richards, 1999).

Participant Characteristics
The current analysis is focused on the subsample of older caregiving
mothers to adult daughters with breast cancer (N 13). Caregiving
mothers ranged in age from 56 to 78, with a mean age of 68 years. About
two fifths (38%) were employed at the time of the interview. More than
one half (54%) were currently married, 38% were divorced or widowed,
and 8% were single or living with a partner. Sixty-nine percent of
the caregiving mothers self-identified as White, non-Hispanic; 23% as
Hispanic; and 8% as Black, non-Hispanic. Their ill daughters were
between age 34 and 56 years, with a mean age of 44. More than one half
(54%) of the daughters were employed. Thirty-eight percent were married, 31% were widowed, divorced, or separated, and 31% were single
and=or living with a partner. Eight-five percent of the ill daughters had
children; most (76%) had two or more children. About one fourth
(23%) of the ill daughters shared a household with their caregiving
mothers. Forty-six percent had been diagnosed with local disease, 46%
with regional, and 8% had metastatic breast cancer. Eight-five percent
had been diagnosed with breast cancer between 6 and 12 months ago.

Psychosocial Issues of Older Caregiving Mothers

137

RESULTS
In-depth focused interviews enabled each caregiving mother to fully
articulate her reactions to her adult daughters cancer diagnosis and the
meaning and implications of the cancer experience on their family life.
Analysis of the mothers narratives documents that the occurrence of
cancer was an event of significant importance to family functioning.
The salient issues that emerged from the mothers interviews focus on
three broad categories relevant to family-centered care: (1) family members emotional responses to the illness, (2) family functioning during
the illness, and (3) hereditary risk.

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Family Members Emotional Responses to the Illness

Older caregiving mothers described complex emotional reactions to their
daughters illness, represented by the following themes: (1) experiencing a
cacophony of emotions; (2) feeling enervated, paralyzed, and overwhelmed,
and (3) confronting an altered and uncertain future.
EXPERIENCING A CACOPHONY OF EMOTIONS
The caregiving mothers accounts documented the intense array of emotions that family members experience over the disease course. Shock,
denial, anxiety, fear, sadness, distress, and guilt were some of the feelings
reflected in the mothers reports. Their narratives also revealed that they
often experienced one or more emotions simultaneously: I was frightened, sad. This intensified the impact. As one mother described it, It
hit me like a ton of bricks. Another recalled, She told me this and I just
hung up the phone and cried.
FEELING ENERVATED, PARALYZED AND OVERWHELMED
Mothers recounted that they were challenged in coming to terms with the
enormity of their daughters health situation. As one mother recounted, I just
found it was very overwhelming for me. And I just had to escape into other
thoughts. I had to just absorb it very gradually. Knowing that their child was
ill was sufficient to demoralize some older mothers and impair their functioning. Your kids are supposed to be okay . . . when theyre not okay, youre
not really yourself . . . you dont have the same interest in doing things.
One mother vividly described her reaction when her daughter informed
her of her illness. Overwhelmed. You just cant, it just envelops you. It just
engulfs you. You can just go into it, like a black ocean kind of feeling. That
its just too big, its all encompassing, and it just, it buries you alive.

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V. H. Raveis et al.

CONFRONTING AN ALTERED AND UNCERTAIN FUTURE

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The mothers accounts of their response when they learned of their daughters cancer diagnosis and processed the implications documented that cancer evoked an instinctual reaction in them that raised fears and worries about
their daughters survival. I just felt like the world was coming to an end, for,
for my world was coming to an end, and I just, just couldnt accept the fact
that my daughter might come to a premature death.
Although the initial concerns mothers held about their daughters health
generally diminished over time, some mothers remained troubled and uncertain about the ultimate outcome. But still, within me, it bothers me, because
I dont know if shes going to overcome this. I just dont know. Mothers
were challenged by uncertainty over the efficacy of their daughters treatment for her long-term survival. You wonder if the treatment is going to
be successful. You wonder if the treatment is going to be the right treatment.
Another mothers comments illustrate the enduring nature of these concerns
and worries for the family,
I dont think anything is going to make me feel perfectly secure. Its
impossible. Until someone says: Whoopee, we have found a cure and
no one ever again will die from cancer! Until somebody does that, I
dont think any of us can feel reassured. I think well always have doubts.

Apprehension over the possible pain and suffering they envisioned their
daughter would endure further contributed to the distress the mothers were
experiencing. These concerns are evident in the following mothers reflection
on her thoughts when she learned that her daughter had breast cancer. I
didnt think about death. What I thought about was what she would have
to go through . . . I said to myself: This is going to be a tough road to hoe.
The mothers accumulated life experiences and long-held beliefs regarding cancer and its probable consequences contributed to their fears and
worries about their daughters well-being. As one mother shared,
I know so many people who have not been able to recover completely,
that it lurks in the back of my mind, and its very hard for me to forget.
And thats why I say terror, and thats why I say fear, and thats why,
Im very, Im still frightened about it, even though my daughters outlook
is very optimistic and very upbeat.

Family Functioning during the Illness

Analysis of the mothers accounts revealed that family functioning during illness is affected by the developmental stages of the extended family system.
Four themes emerged: (1) parental nurturing reawakens, maternal bond
strong; (2) parental rights and responsibilities continue into adulthood; (3)

Psychosocial Issues of Older Caregiving Mothers

139

asynchronous development in the family life cycle; and (4) caregiving affects
family relationships.

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PARENTAL NURTURING REAWAKENS, MATERNAL BOND STRONG

The mothers narrative accounts indicated that for some, their daughters
health situation resurrected long-past behaviors. Caregiving responsibilities
were regarded as merely the resumption of mothering responsibilities relinquished when their children were grown. The following description offered
by one caregiving mother illustrates how her current caregiving mirrored
her earlier parenting, Fixing her food, and waiting on, you know, if anything she really need, fluffing up her pillow. You know, doing little things
that mothers love to do for their children.
Even though their daughters were adults, the strength of the maternal
bond was evident in the caregiving mothers discussions of their responses
to their daughters illness. As one mother related, All you can think of is . . .
when theyre sick, you just want to be there. Another stated, No matter how
old they are, theyre still your baby.
Some caregiving mothers related how they imposed their assistance on
their daughter even when help was not needed because they needed to feel
that they were doing something for her. As one mother explained, She [ill
daughter] says: No, were fine, and I said: You know, I have to do something for you. Its just something that I have to do for myself.
PARENTAL RIGHTS AND RESPONSIBILITIES CONTINUE INTO ADULTHOOD
When the caregiving mothers discussed their caregiving experiences, their
descriptions conveyed that their involvement in their daughters care was
precipitated by an instinctive sense of responsibility, as well as a strong
belief that it was their right and responsibility, as a parent, to be involved
in their daughters care, even though their daughter was an adult. The
enduring nature of parental responsibility is clearly evident in the following
comment one caregiving mother made: You take care of your kids when
theyre not feeling well. I dont care if theyre adults or not. Parental privilege is illustrated in this next statement: I wouldnt want anyone else to do
it. Shes mine.
Embedded within these beliefs of parental responsibility and privilege is
an implicit assumption that parents are capable of handling threats to their
family. I wouldnt want anyone else to do it. Thats my job. Im the one. I
brought her into the world, son of a gun, Im going to make sure she stays
in this world. For some mothers, though, when faced with an illness, such
as cancer, their sorrow and sadness is intensified by their realization that they
are powerless to change the outcome. It makes me sad to have a daughter
who has an illness that I cant take care of. I cant kiss it and make it better.

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V. H. Raveis et al.

ASYNCHRONOUS DEVELOPMENT EVENT IN THE FAMILY LIFE CYCLE

The mothers narrative accounts indicated that these caregiver mothers
regarded their adult daughters illness as an asynchronous life-course
development. The mothers in the current study generally completed
raising their children years earlier. Now, at a stage in their lives with
their child-rearing years passed, when have they may have been
anticipating retirement, a less-demanding lifestyle and more leisure time,
these caregiving mothers have experienced a resumption of their
parenting role. As one caregiving mother shared, this development
affected family functioning, exerting unexpected time and resource
demands.

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Its a strain on my time, in terms of losing time. I havent been able to do

things that I have wanted to, or need to do in my own house. I havent
been able to see people with my husband that we wanted, that we would
have liked to see.

The caregiving mothers reports documented that their daughters illness was
a development that disrupted expectations they held about life and their
future. As one caregiving mother stated,
It has opened my eyes to a lot of things that could happen within a short
time . . . I expect to be the first one in the family to leave this earth, but
sometime it doesnt happen that way . . . . So you never know what in life,
even what can happen in a lifetime.

The mothers accounts also indicated that the timing of the onset of their
daughters illness shattered basic assumptions they held about the developmental stages of family life. As one caregiving mother explained, Its
like a curse, its a curse, because mothers are supposed to get sick before
children.
The mothers comments revealed that their reactions to their daughters
illness took into consideration not only their daughters stage of the life cycle,
but also their own. Some older mothers shared that, as elderly persons, they
felt they had already fully lived their lives. They explained further that they,
not their daughter, should have been the one who developed cancer. As one
mother explained, It should be happening to me, not to my child. Im the
one whos old, Im the one who could go, and my child is young and has
a life ahead of them. Similar sentiments are reflected in another mothers
statement. I hate to see her like that. Like I said, this is what I should be
going through, not her. Im 72 years old, you know, so what, if I have breast
cancer, you know? I mean, Ive already gone through my life.
Caregiving affects family relationships. As children grow into adulthood,
they generally become self-sufficient and self-reliant. The motherdaughter

Psychosocial Issues of Older Caregiving Mothers

141

relationship in adulthood is constrained by differences in their life stages

and the developmental tasks that they are engaged in. The mothers statements documented that even in the context of serious illness family functioning is affected by these developmental issues. As one caregiving mother
commented,

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Its a fine line, we march on. And you have to be very careful. Its one
thing when your kids are little and you can control things. Its a whole
other thing after they reach adulthood . . . . You have to be careful with
what you say and how you say it.

Another consequence of mothers being involved in their daughters care

is that it exposed them to their daughters illness-related vulnerability. This
exposure elicited a variety of protective and supportive actions that altered
how mothers related to their daughter. As one mother explained, I now
see her in a different way . . . . I see her defenseless in certain things. I dont
want her to be like that and so I have thrown myself over her to protect her.
Mothers also spoke of the effort they took to keep their worries and feelings
about the cancer diagnosis and its ramifications hidden from their daughter.
I really tried not to tell her how frightened I was. I didnt want her to feel
insecure. She seemed to be confident. I was the one with doubts. And I didnt
want to influence her. I didnt want to make her frightened.
Mothers reported that caregiving improved and strengthened their
relationship with their daughter. The intimacy and shared experiences that
characterizes care provision intensified their relationship with their adult
daughter. As one mother commented, We are closer than we were before.
Mothers acknowledged that they valued the opportunity that care provision
offered for their daughters to appreciate their efforts. She [ill daughter]
said something about how much she admired me, and stuff like that . . .
which was nice.
In some instances, mothers found that the time that they spent with their
daughter during her treatment and recovery period provided an opportunity
to redefine or reestablish their earlier relationship. As one mother related, It
was nice to spend one-on-one time, too. Usually everything we do is a mass
movement. You know, its like a big class trip. We go to the movies, we take
all the grandchildren. We go to a play, were taking the grandchildren.
Another explained, [Ill daughter] is a very independent young woman, so
its very difficult to do things for her . . . So it was just nice to do something
for her.

Heredity and Breast Cancer

Because of the hereditary aspect of breast cancer, the occurrence of the
disease brings awareness to extended family members of heightened

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V. H. Raveis et al.

susceptibility to the disease. For older caregiving mothers, their responses to

this aspect of their daughters illness were reflected in the following themes:
(1) reactions to personal risk and (2) culpability.

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REACTIONS TO PERSONAL RISK

A family history of breast cancer is indicative of heightened susceptibility to the
disease. For some mothers, their daughters breast cancer diagnosis presented
them with the possibility that they themselves may be at increased risk. The
womens narrative accounts indicated a range of responses to this potential
health threat. For most mothers, the concerns over their own risk were informed
by their age and stage in the life course. As one woman simply remarked, Im
75, honey, I am not worried about a thing. You just take it, if it happens, it happens. Similarly, another mother explained, Im 67, so I have felt that since
quite a few years ago, that what Im on is like a bonus in life. If youre living,
its nice, but if not, its not a tragedy anymore. Ive lived my life already.
Although their daughters illness precipitated some mothers to be proactive
in their health behavior, their comments reflected that life-course considerations
continued as a factor in how these women viewed their cancer risk status.
I do feel more vulnerable, but at this point in my life, Im really not concerned about it . . . . Everybodys got to go sometime, from something.
And if thats my fate, that will be my fate. I do what I can. I go for
mammograms . . . . But, as I say, if thats going to be whats going to happen to me, I dont have control over that. If a lump develops, I have no
control over that. If a lump develops and I take care of it, I have a little
more control, but I still dont really have control. And I cant worry about
it at this point.

CULPABILITY
Part of the distress that mothers experienced about their daughters illness
related to their attribution of the probable cause of their daughters cancer.
One mother described these concerns and feelings of self-blame. I was
asking: Why was this happening to my child? And I couldnt understand
it, you know, couldnt understand why this was happening . . . where did it
come from, why did it happen to her . . . . Did I do something in my life that
caused my child to have this?
Some mothers explicitly verbalized their beliefs about their own
culpability.
One of the things you always do [as a parent, is think]: Is there something that I could have done? Is it something I could have done better? I
mean, well, even with the cancer; maybe I should have had a different
gene pool, my gene pools a mess.

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For those caregiving mothers with an established history of breast cancer

in the family prior to their daughters diagnosis, the onset of breast cancer
in a family member was a familiar occurrence. The unanticipated aspect
was that their daughter developed cancer, whereas they remained disease
free. Their expectation was that if anyone in their immediate family would
develop cancer, it would occur in the older generation before developing
in the next generation. For these mothers, then, their sense of guilt associated
with their family history of cancer was compounded by their daughter developing cancer before they did: I shouldnt have passed this along or it should
have, it [breast cancer occurrence] should have come to me first . . . . Breast
cancer in the family, it should have come to me before it came to her. These
feelings were present even with those mothers who were previously aware
of their family history of breast cancer and had already come to terms with
their own increased risk for the disease.
I was quite bewildered and devastated . . . . Theres a family history of
breast cancer. My mother had breast cancer and her mother had breast
cancer. And I must say it never occurred to me that my child would have
breast cancer before I did. But I fully expected to have breast cancer.

DISCUSSION
With the continuing shift of cancer treatment and management to
community-based care, family members are centrally involved in their relatives care and need to be regarded as part of the care team. Family-centered
care recognizes that supporting family members in their critical support
functions is integral to the medical and psychosocial health of the patient.
However, understanding of the various ways in which the diagnosis,
treatment, and resolution of the disease affect family functioning is still
evolving. Little is known about the cancer experience in the extended
family. The current investigation documents that the occurrence of cancer
is an event of significant importance to the extended family. The caregiving mothers narrative accounts establish that they are a vulnerable group,
profoundly affected by their daughters health situation. The findings
substantiate the complexity of social connectedness in the family system
and the necessity when delivering family-centered care to incorporate
an understanding of the familys illness perceptions, the clinical course
of the disease, as well as consideration of the specific family developmental stages (Carter & McGoldrick, 1999) represented in the extended family
system.
The analysis suggests that older caregiving mothers have complicated
emotional reactions to their daughters illness. Cancer evoked an instinctual response in caregiving mothers, informed by their accumulated life

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experiences and long-held health beliefs. They experienced an intense

array of feelings and were challenged in coming to terms with the perceived enormity of their daughters health situation.
The mothers narratives also indicated that their view of their ill daughters health situation was affected by their primary affiliative relationship, that
is, they are first and foremost the mother. As such, the mothers responded to
their daughters illness with an instinctive response to provide essential care.
Some caregiving mothers embraced caregiving and conveyed proprietary
rights to the role, emanating from their parental status even though their
daughter was an adult. The enduring nature of parental responsibility,
coupled with an implicit assumption that parents are capable of addressing
threats to their familys well-being, also contributed to some caregiving
mothers setting unrealistic caregiving expectations for outcomes that they
could not be expected to control.
The mothers accounts provide evidence that for some mothers the illness reawakens their perception of their daughter as vulnerable, as when
she was a child and needed a mothers protection. The hereditary aspect
of breast cancer also contributes to some older caregiving mothers experiencing strong feelings of guilt that this family disease has passed them by
or having a sense of culpability that they have bequeathed this disease to
their children.
The mothers accounts substantiate the importance of viewing the
individual in the context of their family and the larger social context. Family
functioning during illness is affected by the developmental stages of the
extended family system. Life-cycle developmental issues were a recurring
element in the caregiver mothers reactions to their adult daughters health
condition. The adult daughters serious illness was an asynchronous life
course development that precipitated unexpected time and resource
demands on the extended family. It also was an occurrence that challenged
the caregiving mothers long-held expectations about life, their future, and
their familys future. Caregiving mothers reactions to their daughters illness
took into consideration, not only their daughters stage of the life cycle, but
also their own. Given their stage in the life course, they felt they already
had sufficient time to have fully lived their life. As a consequence, they felt
that they, not their daughter, should have been the one who developed
cancer.
Because of the hereditary aspect of breast cancer, the occurrence of
the disease brings awareness to extended family members of heightened
susceptibility to the disease. For most mothers, the concerns over their
own risk were informed by their age and stage in the life course. An attitude
that was commonly expressed was that at this point in their life course,
reflecting upon their life experiences, they felt that they had led long, full
lives. Illness in old age was regarded as a normative event and they were
not unduly concerned over the possibility.

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Limitations
It is important to recognize that this investigation focused on one type of
cancer, breast cancer, a cancer that has a fairly good prognosis for long-term
survival. The 5-year relative survival rate for all stages of breast cancer at
diagnosis is 89% (American Cancer Society, 2009). For women diagnosed
with localized disease, the 5-year relative survival rate is 98%. The majority
of the patients in this sample had localized disease.
The type of cancer treatments the patients in the sample received did
not generate long-term caregiving needs. The mothers reports of their care
provision described tasks that were not overly complex. The intensity and
duration of their care was more limited than in other types of cancer caregiving situations, such as in end-stage disease. One could consider the
caregiving situation represented in the current analysis as a best-case scenario. Nonetheless, as this investigation documents, a range of complex
psychosocial concerns were evident in the caregiver mothers narratives
and functioning in the extended family was affected. This suggests that even
in those situations when an illness event is not life threatening and caregiving
demands are lessened, the delivery of family-focused, supportive services
and programs would be beneficial.

Clinical Implications
Clinicians who are involved in counseling or supporting families need to be
aware of the complex combination of issues that older caregiving mothers
encounter. By focusing on the experience of the older caregiving mothers,
the current analysis documents the scope of concerns extended family members may be going through. These findings suggest that treatment strategies
that exclusively focus on the emotional responses to a relatives illness may
inadvertently omit consideration of the broad array of salient issues and concerns that are contributing to family functioning during illness. Counseling
and support programs need to incorporate attention to family dynamics and
the changes in interpersonal relationships imposed by care provision and
illness-related concerns. The analysis also indicates that consideration of
the needs and concerns of extended family members merits attention.
Understanding the beliefs about cancer held by family caregivers, their
perception of the seriousness of the disease, their expectation about the
illness and its probable disease course, as well as their sense of culpability
and perception of their role in the disease outcome would inform familycentered services. It is important to recognize that there is not necessarily
consensus within the family system on these beliefs and expectations, nor
are these issues routinely discussed. Providers of family-centered care should
attempt to acknowledge the perspectives of the multiple family members
who may be affected by and involved in the patients illness and treatment.

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By understanding and addressing the needs of family caregivers, familycentered care may reduce the strains and stressors that are experienced
and enhance family functioning during illness, a consequence which will
also beneficially affect the patients medical and psychosocial well-being
(Hodges et al., 2005; Northhouse et al., 2001; Patterson & Garwick, 1994).

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