The aim of this study was to analyse the disease lung cancer and its influence on the daily life as well as the views and needs of people with advanced lung cancer during the course of illness and the needs and problems of their relatives, to draw conclu-sions from this knowledge and to derive practical recommendations in order to im-prove the care situation. The emphasis of this study was based on the period of palli-ative-oncological therapies.
The qualitative explorative interview study was conducted between February 2013 and May 2014 with four data collection intervals. The patients and their relatives were recruited in two university hospitals in Lower Saxony a federal state of Germany.
In total 43 qualitative interviews with 17 patients and 9 relatives were made and could be completed and utilised.
In every data collection interval an open guided questionnaire was used with ques-tions concerning patients’ individual needs and their current health care situation.
The basic material was analysed in three different steps. According to the grounded theory method by Strauss and Strauss/Corbin the evaluation of their individual expe-rience with the illness lung cancer was performed. To examine the individual needs during the course of illness, the qualitative content analysis by Mayring was used. In order to compare the needs of all participants in various times, types were generated by using the typification method by Kuckartz.
Experience lung cancer from patients perspective
Lung cancer can be perceived as highly threatening and determines one’s own sense of being. The diagnosis appears to call forth a feeling of powerlessness, which can lead to ‘information passivity’ with the unconditional acceptance of aggressive tumour treatment. Patients are considerably impaired by potential side effects so that routines in daily life are omitted. After a periode of powerlessness, patients assume the need to get back some everyday routines (e.g. exercise their profession).
Fur-thermore patients show an ambivalent behaviour: on the one hand they realise the rapidly advancing progression of their disease which is based on the recurrent expe-rience of physical weakness and this fact increases their fear of experiencing a pain-ful dying process; on the other hand they continue to foster the hope of being healed and they interpret their physicians’ statements and the aim of their therapy objectively wrong (e.g. curative instead of palliative). In the therapeutic process it is difficult for physicians to detect these misunderstandings because patients try to retain their composure in the interaction with their social and therapeutic environment to pretend everyone their physical and psychological strength. The patients in this sample hided their high physical and psychological stress level with the consequence that psycho-social (auxiliary-) care wasn’t served.
Individual needs during the course of illness
Depending on the stage of the illness, patients suffer different conditions of stress and deficiencies. Patients combine physical stress predominantly with side effects of tumour therapies more than with the illness itself. This patient perspective counter-acts the effect acknowledging and accepting of the severity of the disease.
For interviewees it was a burden to talk about the illness as they noticed emotional insecurity between themselves and their relatives which were caused in a difficulty to talk about the disease situation and possible consequences of the illness. Therefore a tense situation occurs in the patients’ private environment and conflict potential arises. During the course of illness patients show a recurrent need to get information about contact points for their frequent and significant symptoms in order to organise their further treatment focused on their needs, independent from the treating physi-cian.
Particularly noticeable was that participants of the study didn’t consider general or specific palliative (auxiliary-) care although they had frequent and significant symp-toms but they combined this way of treatment with a disruption of their treatment and the initiation of terminal phase.
Regarding the extreme experiences of different conditions of stress and deficiencies, patients develop the needs to get answers about the remaining lifespan and the ex-pected course of disease. Based on this elucidation patients want to reduce physical tortures and emotional distress by planning their care for advanced stages to ensure the consent for possible incapacitated moments.
127 Types of needs
There are different types of needs among patients with lung cancer so that the themes (e.g. hope) they may focus on are the same but differ in the expectation how physicians should react on them to ensure patient-centred care based on individual needs. Patients show different requirements in ‘shared decision making’ wich is de-pendent on their living environment: In the dialogue between the treating physician and the patient it could be less important to plan next steps of tumour therapies than to organise patients’ everyday challenges, because these could be influenced by recommended medical-treatments (e.g. timeconsuming lines of therapy).
Experience lung cancer from relatives’ perspective
Relatives of patients with lung cancer experience significant changes in their own lives. The occurrence of sudden serious illness with unexpected frequent symptom burden for the family member, leads to a change in social roles between relatives and patients. The spouses of affected persons unconsciously get a central role in particular and have to undertake to fulfill a number of tasks such as giving supportive care. In some parts of life, relatives try to avoid these burdens by taking some time out from the disease which is attended by stress. Relatives provide daily assistance with nursing practice, emotional and spiritual succour as well as financial support and they experience high levels of physical and psychological strain without articulating these suffers in contact with physicians. The psychological distress level for patients and their relatives is equal high but psycho-oncological offers mostly persist for pa-tients and less for their relatives till nowadays.