Stabilising of Life: A substantive theory

Aino-Liisa Jussila, Ph.D.

Abstract

The purpose of this grounded theory study was to explore how
families live after one parent has been diagnosed with cancer and
to develop a substantive theory to explain how families solve the
main concern in their lives. The study design was prospective
using 32 joint couple conversations with parents of 13 families
(N=26) during different stages of the cancer trajectory as well as
26 hours of observations of five families, including ten parents
and nine children (N=19), collected during a boarding course on
psychosocial rehabilitation. The data consisted of 2377 incidents
and a memo fund of 97 pages. The main concern of families was
how to respond to the shock of a parent falling ill with cancer.
The core category was stabilising of life through facing of
hardships and assuming an attitude towards the future which
patterned out as detaching, fighting, adjusting and submitting.

Introduction

Cancer as a disease influences not just one person in the
family; instead, it can be perceived as a family disease since the
falling ill of one family member affects the entire family and its
well-being (Anderson and Tomlinson 1992, Åstedt-Kurki et al.
1999, Anderson 2000). Therefore, when one of the parents falls ill
with cancer, it impacts the everyday life of the diagnosed person
and their family members. In addition, the cancer patient’s
relatives or significant others find that the disease is a part of
their lives (Eriksson 1996, Kuuppelomäki 2000, Eriksson and
Lauri 2000a, 2000b, Eriksson 2001, Lindholm et al. 2002).

It is essential to include the family in caring for the patient
and to treat the entire family as a patient, since the family has a
great importance to the cancer patient. According to earlier
research, however, the family may even be ignored and
misunderstood by health care professionals, although the family
with cancer has many issues to be addressed in order to be able
to decrease anxiety and to be able to offer the emotional support
that the patient requires. Thus, family life with cancer should be
studied to improve health care of the cancer patients and their
families.

The Discovery Process

The purpose of this grounded theory study was to explore
how families live after one parent has been diagnosed with
cancer and to develop a substantive theory to explain how
families solve the main concern in their lives. The study design
was prospective using 32 joint couple conversations with the
parents of 13 families (N=26) at different stages of the cancer
trajectory as well as 26 hours of observations with five families,
including in total ten parents and nine children (N=19), collected
during a boarding course on psychosocial rehabilitation. The data
consisted of 2377 incidents and the memo fund of 97 pages. The
data was collected and analysed according to the classic grounded
theory methodology (Glaser, 1978, 1998, 2001).

A Grounded Theory of Family Survivorship through
Stabilising of Life

The substantive theory of family survivorship and its core
category of stabilising of life provide a typology of strategies for
families living with a parent diagnosed with cancer. According to
this typology, families can remain in one type of behaviour or
move from one to another. The properties of stabilising of life are
facing of hardships and assuming an attitude towards the future.
They are related to the feelings and actions prevailing in the
family and, in turn, indicate that the family’s stabilising of life,
as regards facing of hardships and assuming an attitude towards
the future, entails either detaching from the disease, fighting
against the disease, adjusting to life with the disease or
submitting to the disease.

Stabilising of life for a family with cancer either follows the
sequence of behavior in accordance with the subcore categories or
varies between the four behavioral patterns. The variation of
stabilising of life depends on the situation-specific realisation of
criteria representing the various feelings and actions involved in
facing of hardships and assuming an attitude towards the future.
Stabilising of life is manifested in the family based on different
criteria depending on whether facing of hardships and the
associated feelings and actions are life-embracing, persistent and
active or powerless, dejected and passive, and whether assuming
an attitude towards the future and the feelings and actions
related to it are positive, hopeful, meaningful, balanced and
trusting or negative, hopeless, anxious, fearful and doubtful. The
variation in stabilising of life is manifested as variation in the
different stages included in its four different behavior patterns.

Detaching from the Disease

The life of a family detaching from cancer is marked by
maintaining of hope, which is characteristic of the atmosphere in
the family throughout the process of detaching from the disease.
As hopes of recovery awaken, the family maintains hope
supported by the recognition of dispelling concerns and optimistic
thinking. This is manifested in the family’s positive attitude
towards life and their active role in detaching from the disease.
In the family’s process of detaching from the disease,
maintaining hope is followed by living trustingly. In this phase,
family members live in the present as fully as possible trying to
avoid the effects of being ill. When the family is balanced and
shares an atmosphere that evicts concerns, family members live
trusting in the future. There is trust among family members in
detaching from the disease and dispelling concerns, and they
strive actively and trustingly for the future.

Despite detaching from the disease, suffering from cancer
does not pass without effects in the family. When the family
members’ life values change while living with the disease, and
spiritual growth and reinforcing of self-esteem take place, the
family’s self concept changes. In this stage, the active pursuit of
meaningfulness in life, which is built on a new set of values, is
now more pointedly evident in the family members’ lives as they
strive for detaching from the disease.

Progressing of recovery is, in a way, a turning point towards
better, as it consists of feelings and actions associated with
becoming motivated in self care, increasing of treatment
satisfaction, restoring the zest of life and facilitating of life in the
family. When family members take care of the parent and
promote his/her recovery, treatment satisfaction increases. This,
in turn contributes to restoring the zest of life thereby facilitating
the life of the family. The active nature of the family, a positive
attitude in treating the ill family member, and a feeling of
meaningful life promote the patient’s feeling of recovery and
detaching from the disease. At the same time, facilitating of life
amidst the disease appears more and more real.

Continuing the habituated life releases the family from the
circumstances of the disease and enables the detaching from the
disease and the continuing of normal life. When the family’s life
returns to normal and when the relationships have remained the
same despite the disease, the family can resume normal,
everyday routines. Resuming the former life is also manifested in
a positive attitude towards life, a balanced atmosphere in the
family, and the feeling of meaningful life as the family detaches
itself from the disease.

Fighting against the Disease

In the atmosphere of a family fighting against the disease,
becoming surprised by the disease and grieving over falling ill
enter into the first stage of the process of fighting against the
disease. Deliberating about falling ill, which starts the process of
fighting against the disease, comprises the emotions and actions
linked to becoming confused by the disease and seeking reasons
for falling ill. After the family hears about the disease, they are
perplexed and start to deliberate about the disease. Then, the
fearful and anxious atmosphere prevailing in the family is
strengthened by the active seeking for reasons for falling ill.

In the family’s process of fighting against the disease,
deliberating about falling ill is followed by rebelling against the
change in life
. In this phase, family members gather up all their
resources in order to resist the disease and to prevent it from
taking the upper hand. When deliberating about life becoming
more difficult, the family rebels against the change in life
brought about by the disease and criticises the patient’s
treatment in order to bring about changes. Prevalent is a critical
and rebellious but also guilty atmosphere on the one hand, and
on the other hand, unyielding and life-embracing behaviour
aimed at evicting troubles within the family. These intertwine
with a feeling of hopelessness towards the future as the family
fights against the disease.

Overcoming adversities is an expression of the family’s
strength in the process of fighting against the disease. When the
family takes responsibility for the patient’s treatment and
creates fighting morale, they keep up the overcoming of
adversities by processing their worries and by dispelling the
feeling of disease among them. In this stage, the family
overcomes the feelings of hopelessness with their own activity as
they fight the disease.

In the process of fighting against the disease and overcoming
many adversities, people prepare themselves for the after-effects
of treatments and for the deterioration of the patient’s present
condition. Preparing for worse involves feelings and actions
related to getting accustomed to the after-effects of the
treatments and to preparing for a decline in the patient’s
condition. When the family is preparing itself for the after-effects
of treatments, it is simultaneously preparing for worse by
anticipating a decline in the patient’s condition. In the fight
against the disease, this is manifested in a feeling of anxiety in
spite of active and life-embracing actions.

Ensuring functionality enables the fight against the disease.
It involves feelings and actions in the family relating to securing
the future, bearing responsibility for the family, protecting close
ones, rationalising the facing of disease and adopting a new way
of spending time. Family members are ensuring the functionality
during the parent’s disease by aiming in different ways to secure
the future. Moreover, they aim to bear the responsibility for each
other, protect each other from the negative effects of the disease,
rationalise their attitude towards the disease as well as adopt a
new way of spending time.

Adjusting to Life with the Disease

Clarifying of facts begins the process of adjusting to life with
the disease. In this phase, assuming a serious attitude towards
treatment and realising the limited scope of the future are
central features of the family’s atmosphere. When the nature of
the cancer becomes clear, the facts relating to the disease are
clarified and the family starts to live according to the realities
brought about by the disease. At first, the atmosphere in the
family is dejected, but little by little, the family members begin to
act according to the situation as they adjust to life with the
disease.

In the family’s process of adjusting to life with the disease,
clarifying of facts is followed by resorting to help, during which
the family members seek to find relief from their difficult
situation. Family members experience finding relief not only in
contacts to others close to them or in their philosophy of life, but
also in resorting to the individual resources and relying on the
expertise of various professionals. In this phase, despite the
prevalent anxious atmosphere, family members aim to overcome
the feeling of powerlessness prevailing among them as they are
adjusting to life with the disease.

Returning to life is an essential phase in the parent’s and
his/her family’s process of adjusting to life with the disease,
whereby the family members feel concretely that living with the
disease is possible. As the family becomes accustomed to changes
in life, family members begin returning to life by means of being
perplexed by the ending of treatment, attaching to the present
and processing being ill. The atmosphere in the family is hopeful
and the feelings towards the future are trusting as the family
adjusts to life with the disease.

As life is stabilising, the feeling of togetherness among the
family is deepening with the process of adjusting to life with the
disease. Suffering from a disease results in an intensifying of
togetherness
, both by strengthening the intimate relationship and
unifying the family, as well as by bringing their immediate circle
closer together. Thereby, in the family’s atmosphere, signs of
hopefulness, but also helplessness may be detected as the family
members are adjusting to life with the disease.

Maturing through hardships enables the family’s adjusting
to life with the disease by maintaining equilibrium and realising
the importance of looking after oneself. In so doing, the family
notices a higher level of acceptance of circumstances in
comparison with the early days of suffering from the disease.
Maturing through hardships is manifested within the family both
as noticing the hardships caused by being ill and as realising the
solution to them as the family is adjusting to life with the
disease.

Submitting to the Disease

Life coming to a standstill begins the process of submitting
to the disease, wherein family members are shocked to hear
about a parent falling ill and may even experience feelings of
panic and fear of death. They feel as if their entire life is coming
to a standstill due to feelings of shock caused by the grave nature
of the disease. Then, an atmosphere of giving up and
surrendering prevails as they submit to the disease. This sense of
surrender is especially enhanced by uncertainty about the nature
of the disease and fearfulness towards it.

In the family’s process of submitting to the disease, life
coming to a standstill is followed by succumbing to fear, when
different kinds of feelings of anxiety spread from one family
member to another. As dreading the different treatments
spreads in the family and being ill as such is felt as a source of
concerns, family members are comprehensively overcome by fear.
Then, the atmosphere in the family is dominated by a dread
directed towards the disease itself, receiving treatments for it
and living with it, all of which contribute to succumbing to fear.

Succumbing to fear is followed by being burdened by
concerns
, whereby the disease has become a permanent burden
in the life of the family. Along with being burdened by concerns,
life for the family becomes more difficult and stabilises by
submitting to the disease. When the family becomes aware of the
parent’s deteriorating condition, they feel that concerns and
hardships are nearly overwhelming. A powerlessness and
passivity in evicting troubles and an uncertainty towards the
future emerge among the family.

Life turning more difficult complicates the everyday life of
the family and attaches the life of the family to submitting to the
disease. When the everyday life of the family becomes
burdensome and the relationship between the parents faces the
crisis caused by the disease, the life of the family becomes more
difficult and family members become depressed. The entire
immediate circle experiences feelings of dejection. This is
manifested in the family as passivity and hopelessness as well as
submitting to the disease.

Getting caught in being ill attaches the family to the
circumstances of being ill and ties them to submitting to the
disease. When the family, in a way, clings to being ill and family
members grow tired, the family undergoes getting caught in
being ill. The disease takes control over the everyday life of
family members and submitting to the disease deepens. Among
the family, this is manifested in life’s filling with the disease.

Discussion

Many deductive studies have identified the impact of an
adult’s cancer diagnosis and treatment on the functioning of the
family and their importance in relation to the patient’s and the
family’s adjustment to cancer (Cooley & Moriarty, 1997). In
addition, many researchers have found that a family member’s
cancer diagnosis is the family’s concern and affects the entire
family (Cooley & Moriarty, 1997, Shepard et al., 1999). There is a
link between a patient’s feelings of helplessness or hopelessness
in the face of cancer and inappropriate communication among the
family members (Inoue et al., 2003). There is also evidence that
the cancer diagnosis of an adult family member is a shock to the
entire family (cf. Mellon 2002).

This inductive substantive theory of family survivorship
(Jussila 2004) has the core category of stabilising of life as a
response to the shock with two properties: facing of hardships in
the family and assuming an attitude towards the future in a
family. The emergent theory and its typology of stabilising of life
include some similar characters to the family survivorship model
(Mellon & Northouse, 2001, Mellon, 2002), derived from the
resilience model of family stress, adjustment and adaptation
according to McCubbin and McCubbin (1996). According to the
family survivorship model (Mellon & Northouse, 2001, Mellon,
2002), the illness survival stressors relate negatively to the
family’s understanding of cancer. These stressors include
concurrent family stressors, fear of recurrence, and somatic
concerns. Furthermore, family resources, such as the
resoluteness of the family and social support for the family,
relate positively to the family’s understanding of cancer.
Moreover, the family’s understanding of cancer relates positively
to quality of life and mediates the effect of the illness survival
stressors and the family resources. (Mellon & Northouse, 2001,
Mellon, 2002.) Therefore, the family’s quality of life is strongly
related to facing of hardships and assuming an attitude towards
the future in the family, which are the two properties of
stabilising of life. Thus, the outcome variable of the family’s
quality of life in the family survivorship model by Mellon and
Northouse (2001) has some similarities with this substantive
theory of family survivorship and its typology of stabilising of
life, although this inductive theory has its own unique and
powerful character.

Families perceive stabilising of life as essential in their
survivorship. Stabilising of life in a family of a parent suffering
from cancer has similarities with the theory of reconstructing
reality in a family of a child with recently diagnosed cancer
(Clarke-Steffen, 1997). The families view reconstructing reality
as creating a new normalcy. During the transition of living with
childhood cancer, families are using strategies of managing the
flow of information, reorganising roles, evaluating and shifting
priorities, changing the future orientation, assigning meaning to
the disease and managing the therapeutic regimen. (Clarke-
Steffen, 1997). Hence, the character of the process is involved in
reconstructing reality as well as in stabilising of life in order to
continue living in the family with cancer.

Stabilising of life in a family is closely connected to
normalizing of life on an individual basis, as stated by Killoran et
al. (2002), when long-term survivors of metastatic cancer attempt
to normalize their lives through the process of selftransformation.
It is characterised by viewing the diagnosis as
insignificant; questioning the diagnosis or disbelieving the
severity of disease; not worrying; not questioning the cause for
the disease; and explaining the recovery in terms of faith in
medicine, spirituality and personal volition (Killoran et al., 2002).
Stabilising of life is also closely related to the process of
transforming personal tragedy on an individual basis through
different phases identified as encountering darkness, converting
darkness, encountering light, and reflecting light among breast
cancer patients (Taylor, 2000). The similarity between a family’s
stabilising of life and an individual’s normalizing of life through
transformation is found in the character of the process, although
stabilising of life has its own character in the typology as well.

In this research, the typology of stabilising of life consists of
detaching, fighting, adjusting and submitting. The typology of
stabilising of life in a family with cancer is now compared to the
typology of functioning of the family during the palliative phase
of cancer according to Kissane et al. (1994). Cohesiveness,
expressiveness and conflict are the parameters in differentiating
adaptive families from those coping poorly and those whose
members develop psychological morbidity. The members of
supportive families with high cohesiveness have a low level of
psychological morbidity and function competently in the social
world. Accordingly, supportive families have similarities with
families behaving in a detaching manner during stabilising of
life. Supportive families as well as conflict-resolving families
have low psychosocial morbidity, while ordinary families with
intermediate levels of cohesion, expressiveness and conflict
experience somewhat higher psychosocial morbidity. Therefore,
the character of conflict-resolving and ordinary families
resembles the character of families behaving in an adjusting
manner during stabilising of life because the number of conflicts,
differences of opinion and negative feelings is tolerable.
Furthermore, hostile families with a great number of conflicts
have the highest levels of psychological morbidity and poorest
levels of social adjustment and have some similarities with the
families behaving in a fighting manner during stabilising of life.
On the other hand, sullen families having some conflicts, poor
cohesion and limited expressiveness resemble the families
behaving in a submitting manner during stabilising of life.
(Kissane et al., 1994.)

This substantive theory of family survivorship (Jussila 2004)
provides researchers, health care professionals and educators
with a greater understanding of the perspectives of caring
families with cancer in health care. It may also be used in
developing the health care of families and in developing the
education of health care professionals.

Author

Aino-Liisa Jussila Ph.D.
Senior Lecturer
School of Health and Social Care
Oulu University of Applied Sciences
Professorintie 5
FIN-90220 Oulu
E-mail: aino-liisa.jussila@oamk.fi

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