Discussion
Much has been made of the idea that cancer survivors need help to ‘move
on’ from the disease and get the necessary help and support to live
beyond cancer. Booklets (National Cancer Institute, 2014), support
packages (Shaw, et al ., 2017), digital applications (Miller
et al ., 2015; NearSpace Inc., 2014; Schover et al ., 2012;
Hong, Pena-Purcell & Oy, 2012; Yun et al ., 2012), psychological
interventions (Malin, Sayers, & Jefford, 2011; Coscarelli et
al ., 2011), ongoing follow-up (Beaver, Williamson, & Chalmers 2010;
Wang et al ., 2014) by specialist oncology professionals (Mathews
& Semper, 2017), information about long term survival (Jackson, Scheid,
& Rolnick, 2013) and coping mechanisms (Rogers, 1983) have been
developed to help survivors do this. The United States Institute of
Medicine (Hewitt, Greenfield, & Stovall, 2006) researching improving
quality of life for cancer survivors notes the following components
grounded in the medical model of care as essential to survivorship care:
(a) prevention and detection of new cancers and recurrent cancer
(including surveillance for cancer spread, recurrence, or second
cancers); (b) intervention for consequences of cancer and its treatment;
(c) coordination between specialists and primary care providers to
ensure that all of the survivor’s health needs are met for both cancer
and noncancerous conditions, and the care of concurrent conditions; (d)
the use of a patient-centred approach defined as including
responsiveness to patients’ needs, effective communication and
information sharing, encouragement of the adoption of healthy
lifestyles, and assistance in accessing community support services.
Survivorship care plans (SCP) are said to be the key (Hewitt,
Greenfield, & Stovall, 2006). Mathews and Semper (2016) have noted that
the need for help is possibly greater than what is observed and that
therefore, provision should be made for increased and extended support.
These solutions are based in the idea that survivors have ‘problems that
can be remediated by intervening with professional solutions. Care is a
matter of finding the right solutions for each person and implementing
these in the right way. The link between these interventions and an
improved quality of life is assumed.
Our findings indicate that the quality of the lived experience of cancer
survivors through and after the cancer journey comes about because of
‘meaning-making’ of the experience that is, how their world views,
concepts and experiences cause them to interpret their situation.
Feeling connected (or not) to self, others and context was not related
to the experience per se, but to the interpretation of the experience.
What each person had lived through shaped how they saw their future,
with concepts of self and community being fluid, dynamic and unique to
everyone who entered the cancer journey.
Other researchers have touched on this. For example, Mathews and Semper
(2017) note that breast cancer survivors perceive a systemic absence in
support from oncology teams and rapid deterioration in support from
personal support networks. We interpret this lack of support as
disconnectedness. They go on to say survivors can find benefits from the
cancer experience, allowing for adjustment and enabling a successful
transition from a cancer patient to cancer survivor. We interpret this
as finding connectedness.
Interventions that do not meld with the world view of the person for
whom they are being recommended (as is often the case with the medical
model approach to care) are unlikely to result in improving the quality
of life of cancer survivors. For healing to occur there needs to be
connectedness between the health professional and the person receiving
care and connectedness between the intervention and the person’s
framework of meaning because, as this research shows, connectedness
itself is essential to a positive lived experience. Shanfield (1980)
suggests that cancer survivors make sense of their experiences through
their emotions, concerns about mortality, and the sense of
vulnerability. Survivors who thrive integrate life and death within
their personal life history using their framework of meaning (Leigh,
1992).
The medical model, in being based on the idea that an external observer
is better placed to understand the lived experience of the people in
need of care than the people themselves, is not designed to facilitate
this. The shortcomings of the medical model have been noted by many
authors. For example, Chen, Krupa, Lysaght, McCay and Piat (2011) Deegan
(2007, 1988) and Swarbrick (2006), have found it to be un-therapeutic,
disempowering, and not conducive to healing when used as the basis of
care for people with mental illness. The medical model is therefore
unlikely to be an appropriate starting point for caring for suffering
cancer survivors. If this is indeed the case, nurses may need to rethink
their approach to care if they are to contribute to improving the
quality of life of cancer survivors as understanding the meaning
survivors attach to their experiences is essential to effective care.
We advocate a therapeutic relationship based in a human caring model in
caring for cancer survivors as noted in the work of Watson (1999) and
Titchen (2001). Watson (1999) makes a case for human caring as being the
core of the nursing profession. She advocates a caring-healing model
that accommodates the meaning-making of the people nurses care for. She
notes that nursing within a caring science context has a worldview in
which belonging (connectedness) comes before the separate ontology of
being, and before principled, rational-intellectual worldly endeavours.
(Levinas, 2000; Watson, 2005a). Titchen (2001) proposes that the
presence of the therapeutic relationship lies at the heart of
patient-centred nursing and uses several concepts to articulate this:
-
Particularity ; getting to know the patient within the context
of their specific illness and the context of their lives in relation
to their responses, physical functioning and body typology and
feelings, perceptions, beliefs, imaginings, expectations, memories,
attitudes, meanings, self-knowledge, knowledge about and
interpretations of health and illness, experience of illness and what
is happening, responses to illness, concerns and significant social
relationships, life events and experiences
- Reciprocity ; an exchange of concern, knowledge and caring that
occurs in a close interpersonal nurse-patient relationship
- Mutuality ; a genuine relationship between the nurses and the
people for whom care is provided
- Graceful care ; the nurse using all her physical, humanistic and
spiritual abilities to promote the patient’s healing and personal growth
(Titchen, 2001, p. 71).
Several recovery models being adopted by nurses providing care to people
with mental illness lend support for our proposal (Caldwell, Sclafani,
Swarbrick, & Piren, 2010; Davidson, et al ., 2007; Farkas, 2007;
Farkas, Gagne, Anthony, & Chamberlain, 2005; Jacobson & Greenley 2001;
Onken, Craig, Ridgway, Ralph, & Cook, 2007). For example, Onken
et al . (2007) have identified aspects of the human caring model
that include relating care to meaning, and purpose in life, and helping
those receiving care to re-establish or maintain social roles and
meaningful relationships in their communities.
These models sit well with helping cancer survivors attain connectedness
by helping them make sense of the experience within their own world
view. Within this context surviving cancer is not something that is to
be overcome but to be experienced. Healing involves being with the
person, accepting their world view and facilitating their accepting and
naming the invisible wounds that have been created by the cancer
experience so they can connect (or reconnect) with their ‘self’,
‘others’ and their ‘context’.
Implementing this approach is not without its challenges. In recent
decades, linear economic models that have led to the health discourse
being conceptualised as a series of financial transactions have
dominated health systems. (Grossman, 1972; Wagstaff, 1986; Muir, 2006).
In being based in the same assumptions as the medical model (Barker,
2001; Muir, 2006; Delaney & Lynch, 2008; Farley-Toombs, 2011, Chen
et al ., 2011) they have often worked to undermine the caring
aspect of nursing. Governments have ‘invested’ in health care (for
example: Ter-Minassian, 2014) and want people to be processed in the
shortest possible time and to receive the least expensive care to reduce
health costs. A framework dominated by the medical and economic models
(Muir, 2006) may be unable to support a caring-health model of care
where connection is required. Watson (2005b) notes that conventional
medicalised views of people are unsustainable in the absence of
belonging. In other words, belonging is a prerequisite for all the other
care that is provided. Paradoxically, if economic and financial models
continue to dominate health systems we may find ourselves in situations
that resemble hamster wheels whereby we intervene endlessly trying to
‘fix’ the people we care for, neither reducing costs nor attaining our
goals. We believe it is therefore incumbent on nurses to not lose sight
of the essence of what it is to care for others and advocate for space
in the health system to let this occur.