The initial phase of cancer care: An action research project

Abstract

Title The initial phase of cancer care- an action research projectRationale for the study Anecdotal evidence suggested that patients receiving treatment within a Cancer Unit were not receiving equitable care. Some patients reported being told their diagnosis in an empathetic manner, whilstothers reported consultants being brutal and/or uninterested. In addition, it appeared that patients were given variable levels of support and information during their initial phase of cancer care. Aims of the study The purpose of the study was to explore whether the information and support offered to cancer patients in the initial phase of care was sufficient and appropriate to their needs. It was further hoped that the findings of the study could be utilised to change services in a patient centred way. Methodology A qualitative study divided into three stages. Firstly, eighteen non-participant observations of doctor/patient consultations were carried out at the time when patients were told they had a diagnosis of cancer and given information relating to their proposed treatment. The purpose of this was to ascertain what actually happened in practice. The data resulting from this stage of the study enabled an understanding of the problem in context and facilitated the development of an interview schedule, which formed the basis of the second stage of fieldwork. Stage two consisted of thirty-three semi structured, tape recorded patient interviews. These were carried out 3- 4 months following diagnosis. The third stage of the study consisted of interviews and focus groups with consultants, clinical nurse specialists and senior managers, the purpose of which was to explore their views regarding the results of the patient interviews and perceptions of theimplementation of change in clinical practice. The approach taken to structure the data collection was based on grounded theory (Glaser and Strauss, 1967). Findings Many of the issues raised in the patient interviews were consistentwith the literature i.e. patients experience a wide variety of emotions when told they have cancer. The vast majority of patients hear little after the word "cancer", it is therefore important to repeat information and ensure patients have access to ongoing support. Patients also value being told the truth, continuity of information and doctors showing that they care. They appear more satisfied with their care where an effective multidisciplinary team exists. However, patients inthe Cancer Unit where the study was conducted did not receive equitable care, particularly in relation to the amount and type of information and support offered to them in the initial phase of cancer care. The third stage of the study explored consultants', clinical nurse specialists' and senior managers' views relating to the findings from stages one and two of the study. The health care professionals did not exhibit surprise at any of the findings but were keen to explore them further. Views relating to the implementation of change within cancer care were also explored in this stage of the study and their comments were largely consistent with the literature on change management. Innovations in practice A number of changes have been made to clinical practice, including, improved multidisciplinary team working, developing multidisciplinary documentation and developing site specific cancer pathways which identify the patients journey from the point of referral through to follow up or palliation. These pathways help patients know what to expect at each stage of their disease journey and ensure patients receive equitable care, because the pathways act as guidelines for professionals outlining good practice at each stage of the journey. All of the developments initiated to date are aimed at improving the patient experience and staff satisfaction relating to the service they provide.