Abstract
This study aimed to investigate experiences of verbal and written information about sex and relationships among men and women treated with hematopoietic stem cell transplantation. The study also aimed to investigate the demand for information and assessment of the quality of written patient information material entitled “Sex and relationships in the treatment of blood diseases.” Few studies exist that shed any light on the demand for information about sex and relationships on the part of patients with hematological diseases before, during, and after their treatment. A total of 216 patients undergoing treatment for malignant blood diseases between 2000 and 2010 participated in this study. Patients’ experiences of information about sex and relationships, and their opinions about the written patient information, were assessed using a questionnaire created specifically for this study. Most patients (81 %) had not received information about sex and relationships from a healthcare professional. Almost 90 % of men felt that verbal information was important, compared with 82 % of women. The majority also held that written information was important. These results indicate that patients, regardless of gender, age, and treatment, consider oral and written information about sex and relationships to be important and that the healthcare system should provide the information. The written patient information was considered to play an important role in creating an opening for a conversation about a sensitive topic such as sexuality, and also as a source of reference and support for the patient and his/her partner.
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References
Gratwohl A, Niederwieser D (2012) History of hematopoieteic stem cell transplantation: evolution and perspectives. In: Häusetmann P, Steiger J, Passweg J (eds) Transplantation dermatology. Current problems in dermatology, 43rd edn. Karger, Basel, pp 81–90
Hatzimichael E, Tuthill M (2010) Hematopoietic stem cell transplantation. Stem Cells Cloning Adv Appl 3:105–117
Oguz G, Akin S, Durna Z (2014) Symptoms after hospital discharge following hematopoietic stem cell transplantation. Indian J Palliat Care 20(1):41–49
Niederbacher S, Them C, Pinna A, Vittadello F, Mantovan F (2012) Patients’ quality of life after allogeneic haematopoietic stem cell transplantation: mixed-methods study. Eur J Cancer Care 21:548–559
Humphreys CT, Tallman B, Altmaier EM, Barnette V (2007) Sexual functioning in patients undergoing bone marrow transplantation: a longitudinal study. Bone Marrow Transplant 39:491–496
Meston CM, Buss DM (2007) Why humans have sex. Arch Sex Behav 36:477–507
Southard NZ, Keller J (2009) The importance of assessing sexuality: a patient perspective. Clin J Oncol Nurs 13(2):213–217
WHO (2006) Defining sexual health: report of a technical consultation on sexual health, 28–31 January 2002. World Health Organization, Geneva
Lewin B, Fugl-Meyer K, Helmius G, Lalos A, Månsson SA (1996) Sex in Sweden. On the Swedish sexual life 1996. Folkhälsouniversitetet, Stockholm
Gansler T, Kepner J, Willacy E, Soloe C, Rupert D, Jarblum M, Driscoll D, Orr A, Fitzgerald T, Esparza A (2010) Evolving information priorities of hematologic cancer survivors, caregivers, and other relatives. J Cancer Educ 25:302–311
SFS: 1982:763 Hälso- och sjukvårdslagen (the Swedish Health Care Act) Available at http://www.riksdagen.se. In Swedish. Accessed 28 Oct 2014
Burke Beckjord E, Arora NK, McLaughlin W, Oakley-Girvan I, Hamilton AS, Hess BW (2008) Health-related information needs in a large and diverse sample of adult cancer survivors: implications for cancer care. J Cancer Surviv 2:179–189
Hautamäki-Lamminen K, Lipiäinen L, Beaver K, Lehto J, Kellokumpu-Lehtinen P-L (2013) Identifying cancer patients with greater need of information about sexual issues. Eur J Oncol Nurs 17:9–15
Flynn KE, Barsky Reese J, Jeffery DD, Abemethy AP, Lin L, Shelby RA, Porter LS, Dombeck CB, Weinfurt KP (2012) Patient experiences with communication about sex during and after treatment for cancer. Psycho-Oncology 21:594–601
Paul CL, Carey ML, Hall AE, Lynagh MC, Sanson-Fisher RW, Henskens FA (2011) Improving access to information and support for patients with less common cancers: hematologic cancer patients’ views about web-based approaches. J Med Internet Res 13(4):e112
Cohen MZ, Jenkins D, Holston EZ, Carlson ED (2013) Understanding health literacy in patients receiving hematopoietic stem cell transplantation. Oncol Nurs Forum 40(5):508–515
Iconomou G, Viha A, Koutras A, Koukourikou I, Mega V, Makatsoris T, Onyenadum A, Assimakopoulos K, Vagenakis AG, Kalofonos HP (2006) Impact of providing booklets about chemotherapy to newly presenting patients with cancer: a randomized controlled trial. Ann Oncol 17:515–520
Rasmusson E-M, Plantin L, Elmerstig E (2013) ‘Did they think I would understand all that on my own?’ A questionnaire study about sexuality with Swedish cancer patients. Eur J Cancer Care. doi:10.1111/ecc.12039
Olsson C, Berglund A-L, Larsson M, Athlin E (2012) Patient’s sexuality—a neglected area of cancer nursing? Eur J Oncol Nurs 16:426–431
Ançel G (2012) Information needs of cancer patients: a comparison of nurses’ and patients’ perceptions. J Cancer Educ 27(4):631–640
Güleser GN, Tasci S, Kaplan B (2012) The experience of symptoms and information needs of cancer patients undergoing radiotherapy. J Cancer Educ 27:46–53
Brace I (2008) Questionnaire design: how to plan, structure and write survey material for effective market research, 2nd edn. Kogan Page, London
McGrath PD (2012) The impact on sexuality after diagnosis and treatment for a hematologic malignancy: finding from Australia. Oncol Nurs Forum 39(6):595–600
NØrskov K H, Scmidt M, Jarden M (2015) Patients’ experience of sexuality 1-year after allogeneic haematopoietic stem cell transplantation. Eur J Oncol Nurs: 1–8
Olsson C, Athlin E, Sandin-Bojö A-K, Larsson M (2013) Sexuality is not a priority when disease and treatment side effects are severe: conceptions of patients with malignant blood diseases. J Clin Nurs 22:3503–3512
Saunamäki N, Engström M (2013) Registered nurses’ reflections on discussing sexuality with patients: responsibilities, doubts and fears. J Clin Nurs 23:531–540
Daneback K, Månsson S-A, Ross M W, Markham C M. (2012) The Internet as a source of information about sexuality. Sex Education: Sexuality, Society and Learning 12(5). doi:10.1080/14681811.2011.627739
Cho J, Noh H-I, Ha MH, Kang SN, J-y C, Chang YJ (2011) What kind of cancer information do Internet users need? Support Care Cancer 19:1465–1469
Moult B, Franck LS, Brady H (2004) Ensuring quality information for patients: development and preliminary validation of a new instrument to improve the quality of written health care information. Health Expect 7:165–175
Acknowledgments
The author wish to thank all the patients who were involved in this study and gave their valuable input. Many thanks to Sun Nilsson, Graphic Designer, Communications Unit at Skane University Hospital, for the help with the layout of the questionnaires, and to Helene Jacobsson, R & D Centre, Lund, for the help with the statistical analysis and layout.
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Wendt, C. Perception and Assessment of Verbal and Written Information on Sex and Relationships after Hematopoietic Stem Cell Transplantation. J Canc Educ 32, 681–689 (2017). https://doi.org/10.1007/s13187-016-1054-x
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DOI: https://doi.org/10.1007/s13187-016-1054-x