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:
- 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.