Beruflich Dokumente
Kultur Dokumente
Exploration of the familys role and strengths after a young woman is diagnosed
with breast cancer: Views of women and their families
Elisabeth Coyne a, *, Judy Wollin a, Debra K. Creedy b
a
School of Nursing and Midwifery, Grifth University Logan Campus, University Drive Meadowbrook, Queensland 4131, Australia
b
Center for Mothers and Babies, University of Queensland, Australia
a b s t r a c t
Keywords: Purpose: This exploratory descriptive study examined the role and strengths of the family when sup-
Nursing porting the younger woman (<50 years) after a diagnosis of breast cancer. The perspectives of women
Young women
and family members were sought.
Family
Breast cancer
Method: Participants were recruited from oncology outpatient units in Australia. Semi-structured
Qualitative interviews interviews guided by the Family Resiliency Framework were undertaken with 14 young women with
breast cancer and 11 family members who reected on the roles of family. Transcripts were analysed
individually and in family groupings.
Results: Women with breast cancer and their family members experienced a range of emotions during
the treatment period. Roles within the family changed as members responded to their circumstances.
Analysis of interview transcripts identied the following primary themes; just being there, paradox of
help and buffer from society. A secondary theme related to support, specically the changing role of
support for family members, highlighting the strengths and experiences of family.
Conclusion: Recognition needs to be given to the complexity of changing roles experienced by young
women with breast cancer and their families. Young women with breast cancer require unique forms of
support because of the nature of their experience. Family roles were shaped through a shared sense of
commitment and open communication amongst members. Families may demonstrate a range
of strengths but are also vulnerable during this stressful period. Health professionals need to be aware
of the possible needs of families, assess their adaptation to changing circumstances, and intervene
through the provision of information, and counselling to enhance coping.
2011 Elsevier Ltd. All rights reserved.
1462-3889/$ e see front matter 2011 Elsevier Ltd. All rights reserved.
doi:10.1016/j.ejon.2011.04.013
E. Coyne et al. / European Journal of Oncology Nursing 16 (2012) 124e130 125
2001). Many families tend to maintain strong interactions and an treatment approaches, side effects, and disease trajectory and
optimistic attitude when faced with adversity while other families communicate their concerns as they support each other.
struggle (McCubbin et al., 1998). Northouse et al. (2005) in their
quantitative study of 134 dyads (patientecaregiver) identied Breast cancer in young women
several concepts: role adjustment problems for family members,
illness uncertainty, and a perceived lack of support for family Breast cancer is the second leading cancer-related cause of death
members when caring for a woman with breast cancer. They also for women worldwide, with one in eight women being diagnosed
identied the positive inuence of family support on quality of life of prior to the age of 85 years and twenty ve percent of these women
both patient and family. Understanding family interactions during aged less than 50 years (AIHW, 2010; WHO, 2009). Women less than
health adversity provides information on how families work fty years of age, are more likely to be premenopausal and in a phase
together to maintain normative functioning. of life involving child-rearing; with different concerns related to
Previous international research has explored family responses their condition and treatment than older women (Dunn and
to health adversity although few studies have included both the Steginga, 2000). Factors associated with life cycle and social roles
patient and several different family members. Several studies have of young cancer sufferers may exacerbate the breast cancer experi-
used a dyad approach, recruiting the patient and one family ence (Connell et al., 2006; Dunn and Steginga, 2000; Manuel et al.,
member, often the partner, to provide information regarding the 2007). The younger woman is likely to be diagnosed with a cancer
family response to cancer (Manne et al., 2005; Northouse et al., requiring aggressive multimodal treatments that have adverse
2005; Zwahlen et al., 2009). These studies highlight the benet physical and psychological consequences for the woman and her
of family member inclusion in the research particularly to supporting family (Bloom et al., 2004; Coyne and Borbasi, 2006).
understand the communication and interaction between the Family members report role adjustment concerns due to
couple. Other researchers have explored childrens responses to increased demands for care-giving, and difculty managing the
parents with cancer, highlighting not only the distress felt by the womans side effects of treatment and cancer pain (Northouse,
children but also their strength to adapt which reinforces the need 2005; Yates et al., 2004). In addition, they often perceive little
to include a range of family members in research (Forrest et al., support from health professionals and lack of understanding about
2009; Kennedy and Lloyd-Williams, 2009; Osborn, 2007). the health system (Northouse et al., 2005; Yates et al., 2004).
Womens perspectives of family support have also been investi- Exploration of the caregivers experience of cancer pain manage-
gated through qualitative studies, identifying that support was ment in 75 Australian caregiver dyads identied a willingness by
received from a wide range of family members, but the specic family members to participate in pain management care but also
nature of family roles and the strengths demonstrated in such a great deal of distress and difculties in this role (Yates et al.,
contexts are less well known (Bloom et al., 2004; Walsh et al., 2004). An American study of family intervention with couples
2005). While individual data is important, insights from a range (mean age 54 years) identied improvement of the care-giving
of family members may provide a broader perspective of family experience but this was not sustained over time (Northouse et al.,
experiences after a diagnosis of breast cancer. 2005). Working with the family to develop family strengths may
improve longer term adaptation. Changes within roles and the
Strengths of the family associated distress for the family occurs up to 18 months after
diagnosis identifying the need for early identication and support
Families will attempt to support each other and draw on of family members (Bultz et al., 2000). During this time the family
personal strengths to assist adjustment in response to hardship aims to maintain normality but often to the detriment of family
(McCubbin et al., 1998). The Family Resiliency Framework provides functioning and individual family members (Northouse, 2005).
a structure for exploring family responses with a particular focus This study explored the roles and experiences of family members
on strengths (McCubbin et al., 1998). Strengths of the family when supporting the younger woman with breast cancer, and forms
include commitment to the family, communication within the part of a larger study. The main research question was What are the
family (general sharing of information, styles of communication strengths and resources young women and their family members
and humour), family roles (leadership, stability), exibility in the use during treatment for breast cancer?. The Resiliency Model of
face of changing circumstances, and personal appraisal of the Family Stress provided the theoretical framework for the study
illness (meaning of cancer for the family) (McCubbin et al., 1998; being presented. The framework was adopted based on the
Walsh, 2006). Understanding these family strengths may enable complexities of the family experience after the diagnosis of breast
family members to understand the nature of the stressful event cancer (McCubbin et al., 1998). This framework recognises that an
and recognise changes within the family. A strength based adverse event for one family member will inuence the whole
approach also recognises that the response and challenges may family, acknowledges the complex processes associated with family
not be all negative but rather an opportunity for personal and responses, and views the family as a holistic unit. Key aspects of this
family growth (Sears et al., 2003; Walsh, 2006). Although not all theory include: family functioning (roles), communication, coping
families have the ability to adapt positively, several aspects of strategies and adjustment. The framework also recognises that the
family strengths can be explored to provide an understanding of family response is inuenced by factors such as the existence of an
why some families move forward while others do not (McCubbin extended family, culture and community. The framework allows for
et al., 1998). exploration of how the family works together, or not, during
Communication has been identied as a key strength when a stressful event (McCubbin et al., 1998). The recruitment of both
supporting a woman with breast cancer (Lewis et al., 2008; Manne young women with breast cancer and their family members allowed
et al., 2005). In a study with couples, Manne et al. (2005) found that for an insight into the dynamic family environment as the whole
mutual open communication improved the emotional wellbeing of family adjusts to the diagnosis of breast cancer.
both the woman and her partner. The appraisal of the stress or
illness is another strength, which inuences individuals reactions Method
and subsequent ability to adjust (Low et al., 2006). Coping may also
be compromised by specic contextual factors. In regards to breast Semi-structured interviews with young women and their
cancer, the younger woman and her family need to understand families were conducted. Participants were asked to comment on
126 E. Coyne et al. / European Journal of Oncology Nursing 16 (2012) 124e130
condence to turn around and start questioning. Participants also the toilet and things like that but I felt really uncomfortable about
spoke of how family support often had specic roles. Mia explained people coming in .you feel you should be able to look after your
how the family chose different members to assist her during family. Robyn.
treatment, my daughter comes with me and a sister in-law, we took
Small gifts and gestures were appreciated including owers,
her because she was good at remembering stuff. Gail spoke of her
books to read, and offers to care for the children so they could rest.
daughters coming to nd out more information, My youngest
It appeared that women and their families valued additional
daughter is a nurse so she made sure she came with me, so she knew
support but not all offers for assistance were useful. The paradox
exactly what was happening . if I didnt have the girls there I would
occurs when support is needed to help the woman with cancer
have just listened and gone with the ow. Family participants told
maintain family functioning but the support provided was not
stories of how they devoted parts of their lives just to be there for
always personally acceptable. In some cases, support had negative
the woman with breast cancer. Sophie, Janes daughter, explained
psychological consequences and was an intrusion on personal
how she went with her mother to treatment sessions just to be
space.
there for her, often missing out on normal teenage activities.
I just wanted to be some moral support for her and just her Buffer from society
company because I knew sometimes shed be there for hours This theme related to the protective buffer that family provided
waiting, the doctors appointments and treatments, shed be sitting for the woman and how they themselves developed a protective
up there for a while. barrier. Karen, a single mother described how she would phone one
family member with a treatment update and ask them to phone
Support during treatments was characterised by the provision of
everyone else with news as it was too stressful for her to make
emotional support and encouragement. Support may have involved
multiple calls and impart the same news. Participants also reected
distraction, talking, doing pleasurable activities before the treat-
that some family and friends were not good sources of support. This
ment and being there during the long drive to and from hospital.
realization required protective strategies to be put in place. Robyn
Kate, Lynnes mother, spoke of the drive to the hospital, we chatted
spoke about how she ltered information to friends.
on the drive to chemo it was an unspoken rule not to mention the
cancer. Lynne also mentioned this time as reinforcing the strength You learn who can cope with what youre trying to tell them and
of support, She comes every Friday with me. so I think the bond that who you cant so, you know you develop, what to say yeah Im
its formed . its certainly shown our strengths as a family and bought ne and to other people say No Im having a bad day.
us all so much closer together. Charlie, Annas partner, described
Lynne, a single mother, commented that some friends were
how they walked before treatments to reduce the tension; .as you
unable to just be there and help her through this period of illness.
walk you burn up a lot of nervous energy. um. and I think that sort
of kept us reasonably sane. Its almost like theyll cross the road because theyre scared .
Another aspect of this support was the provision of emotional thats just their inability to deal with the word cancer because its
support at home, as family members provided close emotional a big word, its a really big word . but this has bought the family
support for the woman with cancer. Charlie spoke of his wifes closer together, we all know weve got to rely on each other.
parents, Annas very close to her mum [mother], she gets on really
Similarly, family members often ltered phone calls for the
well, they were just there and they were probably the only people we
woman to reduce possible emotional stress of talking to someone
felt really comfortable with. Other women with large families spoke
known to be less helpful. Lynne explained that her 12 year old son
of the whole family being there as well, It seemed to really come
would lter calls on the weekends after her chemotherapy to give
naturally with everyone have to be there for her . I only saw the
her time to recover unless its God I dont want to speak with them.
positive side with them all Gail. Representatives from each family
God was Lynnes mother Kate. Rachel explained how her partner
group told a story of just being there in supporting the woman with
took all the phone calls although he became exhausted from this, S
breast cancer.
took on everything, every phone call, every appointment, everything.
He just took it all on board.
The paradox of help
Family provided practical support such as child care, transport,
The changing role of support for family members
as well as shopping and meal preparation, however the trans-
A perceived strength of the family was the provision of
ference of these roles and responsibilities was not accepted by all
protection or cushioning from life outside of the breast cancer
the women as it often accentuated their vulnerability. Some
event. Women and their family members moved between the role
perceived extra help as acknowledgement of their sick role. Charlie
of supporting and being supported at different times as the
described We werent, you know inrm. I mean Anna sort of treated
family moved through the breast cancer journey. Mia talked of
herself as if she wasnt ill, it was more of a problem. The types of
times when her husband needed support Probably two days of
practical support and attitudes towards providing this support
crying, not by me, from my husband and daughter . I was just saying
varied according to family structure. Members of smaller family
Ill be right you know. Participants also talked of trying not to
units resisted some forms of practical support, whereas open
burden family members with their own distress. The women with
extended families found the provision of practical support to be one
breast cancer worried about how their partners/mothers were
less thing to worry about. Gail who was part of a big family
supported by others. Sally expressed concern about her partner
explained that everyone helped, my girls made sure everything was
during times when she struggled to cope with her condition and
spotlessly clean, meals cooked and everything else, and looked after us
admission to hospital, it was all very well for me to be leaning on him
really well . so I didnt cop any stress that way, the girls made sure.
as my support but he didnt have very much support.. Rachel
Robyn explained how the school mothers helped but it was
explained how her partner was there for her but she was uncertain
sometimes hard to accept. Help from others sometimes repre-
how he was coping, thats really hard, coping for him. I think C pretty
sented the womans inability to no longer care for her family.
much buries his head in the sand [chuckle]. Just as well he is not here to
The mums [mothers] at school rallied and did up a roster about listen to that. Samantha, Janes sister commented on her feelings of
meals . which was a huge help. . they offered to help and scrub needing help, I think it is hard for the support people because it feels
128 E. Coyne et al. / European Journal of Oncology Nursing 16 (2012) 124e130
like we have nothing . forgotten people. Samantha spoke of how and Barton, 2008). Fergus and Gray (2009) explored relationship
she never burdened her sister with her feelings but just kept sup- vulnerabilities of couples during breast cancer noting different
porting Jane and Sophie (Janes daughter) through the treatment. levels of support and adjustment comparable to the current
Mothers of women with breast cancer played a pivotal role as research. Although the women in this research often wanted close
support person that was both different and as important as spousal support, they were mindful of the emotional needs of family, and at
support. The partners of women reported having a role of other times they needed space to nd themselves in their personal
protector; sheltering the woman and family from the outside journey. Both the women and their family members often guarded
world. Mothers reported that they tried to take away the hurt and their distress, and did not share this openly or only asked for
of feeling distressed that it was their daughter and not them support when they were unable to achieve their emotional balance.
suffering a life-threatening disease. Kate (Lynnes mother) This nding is consistent with that of Manne et al. (2005) who
described her anguish when they sat together during chemo- discussed similar changes in communication between couples
therapy. She reported saying to her daughter, I cant believe were when coping with breast cancer.
here having chemo and its you not me. Similarly, the women with The support role of family members through just being there
cancer acknowledged how their mothers often felt sorrow and was varied and characterised by companionship, distracting the
distress, yet tried to make sure they were always there for their woman from thinking about the breast cancer, and participating in
daughters. Rachel explained how her parents provided support so medical consultations. These roles were performed by different
Ive got my Mum and Dad here, still alive and theyve been excellent family members depending on the individual needs of the woman.
offering more intimate things I suppose like nances if we needed it, The ability of the family to be exible and manage changing roles in
and Mums there you know whenever. response to stressful circumstances can reduce the overall level of
Partners reported different levels of psychological distress. anxiety of members and maintain family functioning (Board and
Some male partners reported hiding their true feelings from the Ryan-Wenger, 2000; Mellon and Northouse, 2001).
woman with cancer in an attempt to shield them from their The theme of the paradox of help related to being able to accept
distress, and yet the women perceived the distress. Gail support for practical concerns such as child-minding, transport and
commented home help. Participants talked about this practical support role as
one which reduced the stress for the woman with breast cancer and
I know my husband hid a lot from me because he didnt want me to
conrms previous research ndings on family resilience (Walsh
see how distressed he was. It is only now, later that hes come clean
et al., 2005). Effective practical support was predicated on good
and admitted it just absolutely terried him . I think he could
communication to enable open discussion about the personal
have probably done with a bit of counselling. Gail.
distress experienced by the women, negotiating changing roles and
Conversely, Charlie (husband of Anna in a family with a two year responsibilities, and accepting the need for additional help. The
old child) commented that they shared and talked openly the paradox of help was linked to family dynamics and inuenced
whole time. yeah youve got to cry . one day I actually threw up. which resources and coping strategies the family group used.
um. because I felt so bloody awful about it all. The partners role Northouse (2005) noted that communication styles inuence the
was about supporting and accepting decisions. Charlie explains, I ability of family to work together and seek outside assistance.
tried to be sort of not judgmental in the way she wanted to go, the way Although at times accepting help was seen by the woman in the
she wanted to manage. Mias husband also openly showed his current study as an inability to maintain her own role within the
emotions but with acceptance was able to develop a new role of family, there was variability amongst participants. Perceptions of
protector. Mia commented He spent the whole weekend crying and practical support reected the womans personal appraisal of her
that really shocked me, but once he did that, he then moved on and he illness as either a positive challenge where extra help was needed
was strong, he was my protector. It was this positive strength which or as a negative inuence on her self-concept as carer/homemaker
helped some women stay positive and work out plans together as in her family. Consistent with the Family Resiliency Framework, the
a family as a survival mechanism. appraisal of the situation greatly inuenced the family dynamics
and adjustment (McCubbin et al., 1998).
Discussion The ndings from the current study identied that family
formed a buffer from society for the woman with breast cancer.
The current study provided unique insights on the younger Related to the appraisal of the breast cancer and individual coping
womans perspective of her family during her breast cancer journey strategies, participants acknowledged that some people outside the
and the family members experience. This expands on previous family were unable to cope with the implications of the cancer
research, which has predominantly explored the experiences of diagnosis. The women with breast cancer avoided contact with
women, or older women with breast cancer, or a dyad approach to these people in an attempt to reduce their own distress and
family support. The analysis of data identied the different roles maintain a positive self-belief. This is consistent with ndings from
and responses of the family during their adjustment to breast previous research that explored positive reappraisal after breast
cancer and those of the woman with breast cancer. Key ndings cancer diagnosis, identifying the strength in being able to nd
related to the strength of family in providing emotional and prac- meaning in adversity (Low et al., 2006; Sears et al., 2003). Partici-
tical support, negotiating the helping role, and understanding pants acknowledged that some individuals were unable to cope
when they themselves needed help. with the implications of the cancer diagnosis and they avoided
The Family Resiliency Framework informed an understanding of contact with these people in an attempt to reduce their own
the strength of family support, revealing the quiet supporting role distress. However lack of acceptance and withdrawal of others may
of family; a role of being there providing emotional support. consequently increase the distress for the woman with breast
Family participants spoke of forming bonds, staying positive cancer (Northouse, 2005). The ability to normalise the stress of
through the journey, and about the dynamic nature of their being a situation was similar to ndings of previous studies (Walsh,
there role. Previous research exploring the husbands perspective 2006), where it was noted that an individuals past experience
of supporting their wife with ovarian cancer described a similar altered their ability to cope with the current crisis. Being able to
theme, changes in the marital relationship both positive and accept feelings of distress becomes a journey of personal growth
negative as they supported the woman with ovarian cancer (Ponto when faced with a crisis. It is important for health professionals to
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