gms | German Medical Science

Background: Family members are an important source of support for cancer patients. To meet this task they themselves need information and support. KID caller statistics consistently show that more than 40% of users are close relations of patients, suggesting needs not adequately met elsewhere. A user survey was conducted to explore whether client-centered information as provided by KID has a supportive potential.

Methods: From March through July 2005 all patients and relatives contacting the KID information hotlines were asked to participate in a survey with self-administered questionnaires comprising 46 questions in total. The first one was mailed right after the contact (wave 1), a follow-up on impact 2 weeks later (wave 2). The presented analyses focus on the needs expressed by family members and on a lasting impact of their contact with KID concerning assurance, anxiety, relationship with the patient and general coping.

Results: Of 2590 users who consented to participate 1040 (40%) were relatives with a total return of 79% for wave 1 and 53% for wave 2, roughly two thirds women and one third men. Median age was 47 and 54 years, respectively. Reasons for contacting KID were mostly need of individual information (65%), explanations (45%) and individual counselling (39%). More than 50% felt little or poorly informed about the issues in question before contacting KID. Prior sources of information were mainly the internet (22%), brochures or books (14%) and specialised physicians (13%). Of these, the internet was rated most helpful (26%), followed by brochures/books (15%) and physicians (13%). Asked about their feelings concerning the patient 54 % stated to be rather anxious. Most liked features of the KID service were that there was time to talk (75%) and that the counsellor responded to personal needs (72%). In the follow-up survey exploring the impact of the contact 50% stated that they could better cope with the situation and with the patient, 38% that they were more reassured about the medical care for the patient, and 39% felt less anxious and/or more confident (42%).

Conclusion: Client-centered and relevant telephone information is an easily accessible supportive service for patients´ relations that can reduce experience of anxiety and enhance coping and relationship with the patient. Detailed analyses of needs and impact according to age groups, education level, basic health information behaviour, cancer type and disease stage will be presented.