The relationship with nurses is a lifeline for care-dependent patients with cancer
Michela Piredda, from Italy, takes a sympathetic look at care dependency and describes a study into how nurses view this key issue.
The concept of care dependence
Dependence is intrinsic to human beings as a consequence of the fragility of the human bodily condition and of its relationality1,2,3. However, in contemporary society autonomy, independence, self-sufficiency and rationality are seen as the key characteristics of the human individual2. Dependence is therefore stigmatised as a defeat, loss of autonomy and loss of freedom1.
Dependence on care is reported by some as negative and able to generate suffering, humiliation and helplessness, and by others as natural or positive. A negative vision of dependence may intensify the suffering and humiliation of people who become care dependent4.
Care dependency in patients with cancer
Cancer incidence and burden is growing in Europe and the population is ageing. Therefore, more patients with cancer will have co-morbidities and disability and will be more likely to face some level of dependency5. Being a burden to others is a great concern for patients with cancer6, and depending on others for the activities of daily life can cause feelings of inadequacy and inferiority7.
Staff at the Research Unit Nursing Science Campus Bio-Medico di Roma University
Care dependence is a key concept in nursing, which is aimed at helping people who are no longer independent in the activities of daily life, and to help restore or promote the possible independence, but it is still understudied. Being aware of and recognising dependence is the key to independence1. Since nursing care dependence is relational, the people involved can influence the meaning attached to dependence. In particular, nurses’ perception of patients’ dependence on care could influence their care and consequently the way the patients experience it. Only one study was found that explored the meaning of dependence as disclosed by nurses working in medical and surgical wards8.
Therefore, we conducted a multicentre qualitative study to explore the meaning attached to care dependence by nurses caring for patients with advanced cancer. The study involved oncology nurses who had at least one year of experience taking care of patients with cancer. Data collection was carried out from March 2013 to May 2014 in two hospitals in Rome: the University Hospital Campus Bio-Medico and the National Cancer Institute of Regina Elena. Nine focus groups were conducted, each lasting 30-50 minutes and including 4-8 nurses, for a total of 45 nurses. The discussions were facilitated by two moderators, audiotaped and transcribed verbatim. The transcriptions were analysed by inductive Content Analysis9.
Valentina Biagioli with her poster at the EONS-10 Congress
From the analysis of the discussions with nurses seven themes emerged that will be discussed here (Table 1) and illustrated with the participants’ words.
Dependence is a total experience that builds an immediate relationship between nurses, patients and family members
From the discussions it was clear that dependence was perceived as a total experience. As one nurse noted: “Dependency is never just physical, to define it as only physical is too limited (…) there is also a psychological component... You can’t divide these.” The relationship between nurses, patients and family members was strong and built at the first encounters. Nurse participants acknowledged that: “(Oncology) is an area where the relationship with the patient is important, so I say that it is inevitable; it is a patient in need, which at a relational level absorbs so much (from us).”
Dependence may be lived either positively or negatively both by nurses and patients
Some nurse participants expressed how the patients they care for ‘live’ their dependence, either negatively: ‘Sometimes it is humiliating to depend on other people and they often let us notice that. (…) They feel shame, above all if they are elderly, for body care,” or positively: “One look, a smile is enough, and they calm down.”
Several nurses also reported their feelings regarding the care provided to dependent patients. One participant said, for instance: “Sometimes I come home almost frustrated, because I cannot spend the time that I would like with my patients.”
Within dependence, the relationship is a lifeline and Within dependence the patient looks for a special relationship
Several participants noted that care dependent patients saw the nurses as reference points and as salvation anchors: “If you stay with them just twenty minutes, talking with them, you become a salvation anchor.” Several nurses also noted that patients looked for a special relationship with nurses: “When I was there on my shift, it was an ongoing, continuous stay in their room.”
The experience of dependence changes the history of patients, nurses and family members
The discussions highlighted how relationships between patients and family members changed because of dependence, and strong bonds were created. One nurse noted: “(..) a strong bond has been created between this father and his son, a bond that wasn’t there before. And so they gave thanks to the illness. It has been a nice thing, because they found and rediscovered themselves. Dependence somehow strengthens the relationships.” Nurses also acknowledged how caring for dependent patients helped them to change the way they saw life: “In our job, one gets positive elements, even of re-appreciating one’s own life.” And another noted: ‘One realises how life is beautiful (…) you appreciate everything you have.”
Cure and care influence dependence and The organisational context influences the experience of dependence
Among the aspects able to influence patients’ experience of dependence, nurses identify the chronicity of cancer - that allows patients to learn how to manage by themselves, the frequent hospitalisations - with their organisational context: “I think it is an environmental factor: lack of privacy, change of timing, sharing their room with another person…” and, aspects of cure: “A good treatment for pain could help to foster independence.”
Within the theme ‘Dependence may be lived either positively or negatively both by nurses and patients’, nurses in this study seem to feel that they fall short and want to have more time for their patients. This is in accordance with the finding of the study by Strandberg & Jansson8 that dependency on care is a burden for patients as well as for nurses. This study highlighted the importance of the nurse-patient relationship for the experience of dependence, in accordance with findings from a meta-synthesis on the experience of dependent patients4, and from the study with patients with cancer10. The theme ‘Cure and care influence dependence’ is also in accordance with the study with patients with cancer10. Moreover, the impact of the organisational context identified in this study is in accordance with the meta-synthesis by Piredda et al.4
Picture: Maria Teresa Capuzzo talking with a patient
In conclusion, this study helps to raise oncology nurses’ awareness of the importance of their relationship with patients and of its therapeutic function. Nurses underline trust and listening to patients as essential for autonomy recovery. Oncology nurses should also be aware that care dependent patients perceive them as lifelines. Therefore they should establish caring relationships with patients and their families, in order to improve their experience of dependence.
Piredda Michela, Capuzzo Maria Teresa, Biagioli Valentina, Marchetti Anna, Facchinetti Gabriella, De Marinis Maria Grazia.
Research Unit in Nursing Science, Campus Bio-Medico di Roma University, Rome - Italy