'There is still a part of me that would love to be the old me again', how do adolescents and young adults (AYA) experience cancer-related bodily changes: a phenomenological interview study.

PURPOSE: Due to the increase in both cancer incidence and overall survival rates, more adolescents and young adults (AYAs) have to live with the effects that their cancer diagnosis and following treatments have on their bodies. This qualitative phenomenological study aimed to gain more insight into the way AYAs experience these effects and how they respond to these effects. METHODS: Semi-structured interviews with a sample of 11 AYAs with an age range of 25-41 years at the time of the interview, who were diagnosed with different types of cancer, were conducted. Participants were recruited via social media and patient associations until data saturation was reached. A topic guide with open-ended questions about lived experiences was used. Interpretative phenomenological analysis (IPA) was performed to analyse the transcripts. RESULTS: We identified six Group Experiential Themes based on different ways AYAs experience their bodies: (1) self-conscious body, (2) vulnerable body, (3) adapting to the body, (4) uncontrollable body, (5) remembering the body and (6) shared bodies. CONCLUSION: This study offers in-depth insight into the bodily experiences of AYAs after cancer and how they respond to these changes from a phenomenological point of view. IMPLICATIONS FOR CANCER SURVIVORS: This knowledge could be beneficial to provide more guidance for AYAs during and after their illness, by focussing on personalised psychological (after)care.

Changes in internet use and wishes of cancer survivors: A comparison between 2005 and 2017.

BACKGROUND: Given the major changes in internet use for health communication, the objective of the current study was to compare the internet use and wishes of cancer survivors between 2005 and 2017. METHODS: The authors drew a sample of 390 patients in 2005 and 539 patients in 2017 who were diagnosed with breast (128 patients in 2005 and 143 patients in 2017), prostate (96 patients in 2005 and 126 patients in 2017), or gynecologic (89 patients in 2005 and 188 patients in 2017) cancer or lymphoma (77 patients in 2005 and 82 patients in 2017) in 4 different hospitals for the periods 2002 through 2004 and 2014 through 2016. These patients were sent a paper-based questionnaire that contained 45 questions regarding demographics and 4 functions of internet use: content, communication, community, and e-health. RESULTS: The response in 2017 (53%) was lower than that in 2005 (75%). Survivors browsed the internet most frequently to search for information regarding cancer shortly after being diagnosed and while waiting for treatment. There was little change noted with regard to the relative importance attached to the various subjects. In 2017, significant increases were evident with regard to finances (+33%), health care insurance (+29%), and genetics and/or heritability (+27%). The wishes expressed in 2005 by patients were realized in part in 2017. CONCLUSIONS: A significant sample of cancer survivors in the Netherlands have indicated that the internet is an important source of information regarding their illness. However, little change was evident over the past 15 years with regard to patients' priorities regarding their wishes for internet use. The wishes of users in 2005 were found to accurately reflect the internet use of the majority of patients in 2017. The results of the current study support the belief that health care professionals should expand their online services and tailor them toward the needs and wishes of their patients.

Internet use by cancer survivors: current use and future wishes.

OBJECTIVE: The objective of this study was to evaluate the extent of internet access and use and patient characteristics associated with internet use. We also aimed to study when and at which sites cancer patients search for information, the self-reported effect on health care use, and patients' wishes with respect to future internet possibilities. MATERIALS AND METHODS: We drew a sample of 390 patients diagnosed with breast (n = 128), prostate (n = 96), or gynecological (n = 89) cancer or lymphoma (n = 77) in four different hospitals in the period 2002-2004, who were 65 years or younger at diagnosis. These patients were sent a questionnaire that contained 45 questions about demographics and three broad applications of internet use: content, communication, community. RESULTS: Of the 261 (75%) patients who responded, 60% used Internet by themselves, 9% via others, whereas 31% did not use the Internet. High education, young age, and high socio-economic status were all independently positively associated with internet use. Of the patients with complaints but pre-diagnosis, 41% searched the Internet for information about cancer daily to several times a week. After diagnosis, during treatment, and at follow-up, this was, respectively, 71%, 56%, and 4%. Although patients preferred to get reliable information from the Web site of their oncologist (88%), hospital (70%) or Dutch Cancer Society (76%), Web sites that are completely financed and created by pharmaceutical industries were mentioned most as source of information. Patients who used the Internet to find information about cancer felt themselves to be better informed about their disease (72%); only 3% thought that consulting the Internet increased the frequency of visiting their doctor, whereas 20% felt that information from the Internet influenced the treatment decision made by their doctor. Most patients who use the Internet would like to be able to access their own medical file (79%) or test results (81%) if possible. CONCLUSION: Many cancer patients use the Internet to find reliable information about their disease and treatment. Patient information centers from hospitals should be strongly encouraged to improve disease and treatment information facilities on their hospital Web site, especially since most patients view their oncologist still as the most important source of information.