Patient with cancer : Their preferences and experiences of participation in treatment and care decisions

Abstract: The main aim of this thesis was to investigate preferences for participating in treatment decision-making in patients with colorectal cancer before treatment and at a one-year followup and to compare the relationship between these preferences and coping factors. An additional aim was to explore the patients' meaning of illness and their experiences of decision-making concerning treatment and care. The aim of study I was to examine preferences about the degree of participation in treatment decisions among a group of patients with colorectal cancer and to relate the results to the patients' sense of coherence and the meaning they attributed to the disease. The results show that 62 % of the patients preferred a collaborative role in treatment decisions. There were no statistically significant differences between the preferred roles with respect to the patients' sense of coherence and the meaning they attributed to the disease. The aim of study II was to compare preferences for participation in treatment decisions before and one-year after surgery with the patients' sense of coherence. The results show that before surgery 71 % of the patients and at the one-year follow-up 75 % of the patients' preferred collaborative roles in decision-making. Sixty-four percent maintained their preferred roles from before surgery to the one-year follow-up. There were no statistically significant differences between the preferred roles with respect to the patients' sense of coherence either before surgery or at follow-up. The aim of study III was to explore emotional and interactional perspectives of the meaning of illness, for a one-year illness period from the time of receiving the cancer diagnosis. The constant comparative method was used to analyse data. The meaning of the illness was expressed in the main theme, 'Attempting to find meaning in illness in order to achieve emotional coherence'. The theme consists of two dimensions; unified and dichotomised embodiment. The sub-themes of unified embodiment dimension were: gratefulness, confidence in oneself and others, looking forward, and creating a new future. The sub-themes of the dichotomised dimension embodiment were; altered self-worth, loss of temporality, infringement, and loss of integrity. The aim of study IV was to explore and conceptualise the experiences of participating in decisions. The constant comparative method was used. The concept of participation was formulated into the main theme as 'Compliant participation in serious decisions'. The theme comprised two variations: complying with participation and complying without participation. Complying with participating was characterised by a high level of selfconfidence and selfcompetence and was associated refers to open dialogues between the participant, physician and nurse. Complying without participating was characterised by the participants' uncertainty and being urged to submit to decisions with a minimum delay without having time to consider the information provided or influence the treatment and care process. Conclusion: A patient's preference in participation in treatment and care decision-making seems to be preconditioned by many factors, above all their understanding of the situation, information attained, the meaning they ascribe to the illness as well as interpersonal factors. To participate (or choosing not to participate) builds on open and affirming dialogues, information and knowledge about the illness. This helps the patient to experience a sense of coherence and selfcontrol. The findings suggest that support of a patient's participation in treatment and care decision-making should aim to minimise or prevent distress and uncertainty. Increased patient participation in treatment and care decision making is interpreted as a health promoting way to cope with their illness. Further research is required to illuminate social and interpersonal aspects of patient participation in decision-making in order to develop appropriate ways of providing emotional support to this group of patients.