title: Responses and relationship dynamics of men and their spouses during active surveillance for prostate cancer: health literacy as an inquiry framework.
abstract: BACKGROUND
  Early stage prostate cancer patients may be allocated to active surveillance, where the condition is observed over time with no intervention. Living with a cancer diagnosis may impose stress on both the men and their spouses. In this study we explore whether the scores of and verbal responses to a Health Literacy Questionnaire can be used to identify individuals in need of information and support and to reveal differences in perception and understanding in health related situations within couples.
  
  
  METHODS
  We used the nine-domain Health Literacy Questionnaire (HLQ) as a framework to explore health literacy in eight couples where the men were on active surveillance for prostate cancer progression. Scores were calculated for each domain for both individuals. For each couple differences in scores were also calculated and related to the informants' self-reported experiences and reflections in relation to participating in an active surveillance program. Also an inductive analysis was performed to identify themes in the responses and these themes were compared to those of HLQ.
  
  
  RESULTS
  The men tended to score higher than their spouses. There was no consistent relation between scores and the reported experiences and reflections. However, some interesting patterns emerged, e.g. in two of the three couples with the largest within couple differences in HLQ scores, responses revealed discrepancies in how the men and their spouses perceived their situation. Also, three themes emerged which related to six of the HLQ domains, i.e. involvement of spouses and other people around the men; support from and interaction with healthcare professionals; and use of the Internet for information retrieval.
  
  
  CONCLUSIONS
  Using the HLQ as an interview framework provided insight into the differences within couples and provided new perspectives on their experiences, including their contact with health professionals and the patient-spouse interaction when dealing with prostate cancer. The HLQ used as a dialogue tool may be an adjunct to assist healthcare providers to understand the need for support and information of men with prostate cancer on active surveillance and the dynamics within couples.
authors.affiliation: The Danish Cancer Society Research Center, Strandboulevarden 49, DK-2100, Copenhagen Ø, Denmark. lk@sund.ku.dk.|Department of Public Health, University of Copenhagen, Øster Farimagsgade 5, DK-1014, Copenhagen K, Denmark. lk@sund.ku.dk.
authors.forename: Lars
authors.initials: L
authors.lastname: Kayser
authors.affiliation: The Danish Cancer Society Research Center, Strandboulevarden 49, DK-2100, Copenhagen Ø, Denmark. nete.hn@gmail.com.
authors.forename: Nete S
authors.initials: NS
authors.lastname: Hansen-Nord
authors.affiliation: Public Health Innovation, Population Health Strategic Research Centre, Deakin University, 221 Burwood Highway, Burwood Victoria, 3125, Melbourne, Australia. richard.osborne@deakin.edu.au.
authors.forename: Richard H
authors.initials: RH
authors.lastname: Osborne
authors.affiliation: The Danish Cancer Society Research Center, Strandboulevarden 49, DK-2100, Copenhagen Ø, Denmark. annet@CANCER.DK.
authors.forename: Anne
authors.initials: A
authors.lastname: Tjønneland
authors.affiliation: The Danish Cancer Society Research Center, Strandboulevarden 49, DK-2100, Copenhagen Ø, Denmark. rikkehan@CANCER.DK.
authors.forename: Rikke D
authors.initials: RD
authors.lastname: Hansen
mesh_terms: D000223:Adaptation, Psychological; D000368:Aged; D000369:Aged, 80 and over; D003718:Denmark / Q000453:epidemiology; D005260:Female; D057220:Health Literacy / Q000706:statistics & numerical data*; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D011471:Prostatic Neoplasms / Q000453:epidemiology / Q000523:psychology*; D018454:Spouses / Q000523:psychology* / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology* / Q000706:statistics & numerical data