Advocates and Voices. Swedish patient associations, their importance to individuals with cancer and collaboration with health care

Abstract: Patient associations (PAs) have an increasing impact for their members and for the health care system. This thesis studies PAs for cancer patients (PACPs) ? currently with over 20 000 members in Sweden ? regarding coverage, activities, and collaboration with the health care system with specific reference to the members? experiences. Study I identified and characterized Swedish PACPs, their activities and member support. PACPs for patients with breast cancer and colorectal cancer were the most common. Collaboration with the health care system was reported by 69%, but only a third of the associations reported national collaboration and only one of 20 reported international collaboration. Study II investigated how 1 810 PACP members motivated their membership. Motives related to having cancer were more often reported among members of PACPs for breast cancer (38%) and gynaecological cancer (36%) than members of PACPs for prostate cancer (25%), whereas information and activities were dominant reasons for membership in the latter group. Study III assessed how the contact person (CP) activity was perceived by members with breast cancer and demonstrated that shared experiences give new perspectives on having cancer, that feelings of isolation are part of the disease identity, and that relations with others enable self-help. The relationship between the PACP member and the contact person is sensitive, however, and failure to meet with the patients? needs and expectations may strengthen feelings of isolation. Studies IV-V investigated experiences from collaboration between PACPs and health care. Participants in a network aimed at improving cancer care described their experiences. The themes that emerged reflected the impact of communication and networking, of learning, of innovation and development in cancer care, and of the PACPs members? individual cancer experiences. After five years of networking, PACP members and health care professionals who remained in the network described their experiences and different voices emerged: the hesitant, the enlightened, the liberated, and the representative voice. In summary, our studies have characterized Swedish PACPs and their activities, have demonstrated how PACP members motivate their involvement and how CP activities are experienced, and have identified benefits and difficulties in networking between PACPs and health care.