The importance of social relationships for brain tumor patients’ quality of life: A case for the inclusion of the concept of disclosure in psycho-oncological care

References

• Engel GL. The need for a new medical model: A challenge for biomedicine. Science. 1977;196(4286):129–136. doi:10.1126/science.847460
   PubMed Web of Science ®Google Scholar
• Borrell-Carrió F, Suchman AL, Epstein RM. The biopsychosocial model 25 years later: Principles, practice, and scientific inquiry. Ann Fam Med 2004;2:576–582. doi:10.1370/afm.245
   PubMed Web of Science ®Google Scholar
• World Health Organization. International classification of functioning disability and health (ICF). Geneva: World Health Organization; 2001.
   Google Scholar
• Darlix A, Zouaoui S, Rigau V, et al. Epidemiology for primary brain tumors: A nationwide population-based study. J Neurooncol. 2017;131(3):525–546. doi:10.1007/s11060-016-2318-3
   PubMed Web of Science ®Google Scholar
• Khan F, Amatya B. Factors associated with long-term functional outcomes, psychological sequelae and quality of life in persons after primary brain tumour. J Neurooncol. 2013;111(3):355–366. doi:10.1007/s11060-012-1024-z
   PubMed Web of Science ®Google Scholar
• Ownsworth T, Hawkes A, Steginga S, Walker D, Shum D. A biopsychosocial perspective on adjustment and quality of life following brain tumor: A systematic evaluation of the literature. Disabil Rehabil. 2009;31(13):1038–1055. doi:10.1080/09638280802509538
   PubMed Web of Science ®Google Scholar
• Zabora J, BrintzenhofeSzoc K, Curbow B, Hooker C, Piantadosi S. The prevalence of psychological distress by cancer site. Psychooncology 2001;10(1):19–28. doi:10.1002/1099-1611(200101/02)10:1%3C19:AID-PON501%3E3.0.CO;2-6.
   PubMed Web of Science ®Google Scholar
• Goebel S, Harscher M, von, Mehdorn HM. Comorbid mental disorders and psychosocial distress in patients with brain tumours and their spouses in the early treatment phase. Support Care Cancer. 2011;19(11):1797–1805. doi:10.1007/s00520-010-1021-8
   PubMed Web of Science ®Google Scholar
• Chochinov HM. Depression in cancer patients. Lancet Oncol. 2001;2(8):499–505. doi:10.1016/S1470-2045(01)00456-9
   PubMed Web of Science ®Google Scholar
• Krebber AMH, Buffart LM, Kleijn G, et al. Prevalence of depression in cancer patients: A meta-analysis of diagnostic interviews and self-report instruments. Psychooncol 2014;23(2):121–130. doi:10.1002/pon.3409
   PubMed Web of Science ®Google Scholar
• Goebel S, Mehdorn HM, Wiesner CD. Social cognition in patients with intracranial tumors – Do we forget something in the routine neuropsychological examination? J Neurooncol. 2018;140(3):687. doi:10.1007/s11060-018-3000-8
   PubMed Web of Science ®Google Scholar
• Janda M, Steginga S, Langbecker D, Dunn J, Walker D, Eakin E. Quality of life among patients with a brain tumor and their carers. J Psychosom Res. 2007;63(6):617–623. doi:10.1016/j.jpsychores.2007.06.018
   PubMed Web of Science ®Google Scholar
• Mainio A, Hakko H, Timonen M, Niemelä A, Koivukangas J, Räsänen P. Depression in relation to survival among neurosurgical patients with a primary brain tumor: A 5-year Follow-up Study. Neurosurg. 2005;56(6):1234–1242. doi:10.1227/01.NEU.0000159648.44507.7F
   PubMed Web of Science ®Google Scholar
• Chou AF, Stewart SL, Wild RC, Bloom JR. Social support and survival in young women with breast carcinoma. Psychooncol. 2012;21(2):125–133. doi:10.1002/pon.1863
   PubMed Web of Science ®Google Scholar
• Fong AJ, Scarapicchia TMF, McDonough MH, Wrosch C, Sabiston CM. Changes in social support predict emotional well-being in breast cancer survivors. Psychooncol. 2017;26(5):664–671. doi:10.1002/pon.4064
   PubMed Web of Science ®Google Scholar
• Müller D, Mehnert A, Koch U. Skalen zur Sozialen Unterstützung bei Krankheit (SSUK): Testtheoretische Überprüfung und Validierung an einer repräsentativen Stichprobe von Brustkrebspatientinnen. Zeitschrift Für Medizinische Psychologie 2004;13:155–164.
   Google Scholar
• Lincoln KD. Social support, negative social interactions, and psychological well-being. Soc Serv Rev. 2000;74(2):231–252. doi:10.1086/514478
   PubMed Web of Science ®Google Scholar
• Wong CCY, Warmoth K, Ivy S, Cheung B, Lu Q. Relation of social constraints on disclosure to adjustment among Chinese American cancer survivors: A multiprocesses approach. Psychooncol. 2018;27(3):977–982. doi:10.1002/pon.4604
   PubMed Web of Science ®Google Scholar
• Yeung NCY, Ramirez J, Lu Q. Perceived stress as a mediator between social constraints and sleep quality among chinese american breast cancer survivors. Support Care Cancer. 2017;25(7):2249–2257. doi:10.1007/s00520-017-3632-9
   PubMed Web of Science ®Google Scholar
• Adams RN, Mosher CE, Winger JG, Abonour R, Kroenke K. Cancer-related loneliness mediates the relationships between social constraints and symptoms among cancer patients. J Behav Med. 2018;41(2):243–252. doi:10.1007/s10865-017-9892-5
   PubMed Web of Science ®Google Scholar
• Lepore SJ. A social–cognitive processing model of emotional adjustment to cancer. In: Baum A, Andersen BL, eds. Psychosocial Interventions for Cancer. Washington: American Psychological Association; 2001:99–116.
   Google Scholar
• Lepore SJ, Revenson TA. Social constraints on disclosure and adjustment to cancer. Social Pers Psych Compass. 2007;1(1):313–333. doi:10.1111/j.1751-9004.2007.00013.x
   Google Scholar
• Davie GL, Hutcheson KA, Barringer DA, Weinberg JS, Lewin JS. Aphasia in patients after brain tumour resection. Aphasiology 2009;23(9):1196–1206. doi:10.1080/02687030802436900
   Web of Science ®Google Scholar
• Jenkins LM, Drummond KJ, Andrewes DG. Emotional and personality changes following brain tumour resection. J Clin Neurosci. 2016; 29:128–132. doi:10.1016/j.jocn.2015.12.007
   PubMed Web of Science ®Google Scholar
• Campanella F, Shallice T, Ius T, Fabbro F, Skrap M. Impact of brain tumour location on emotion and personality: A voxel-based lesion-symptom mapping study on mentalization processes. Brain. 2014;137(9):2532–2545. doi:10.1093/brain/awu183
   PubMedGoogle Scholar
• Fox S, Lantz C. The brain tumor experience and quality of life: A qualitative study. J Neurosci Nurs 1998;30(4):245–252.
   PubMedGoogle Scholar
• Janda M, Eakin EG, Bailey L, Walker D, Troy K. Supportive care needs of people with brain tumours and their carers. Support Care Cancer. 2006;14(11):1094–1103. doi:10.1007/s00520-006-0074-1
   PubMed Web of Science ®Google Scholar
• Sterckx W, Coolbrandt A, Clement P, et al. Living with a high-grade glioma: A qualitative study of patients' experiences and care needs. Eur J Oncol Nurs. 2015;19(4):383–390. doi:10.1016/j.ejon.2015.01.003
   PubMed Web of Science ®Google Scholar
• Hricik A, Donovan H, Bradley SE, et al. Changes in caregiver perceptions over time in response to providing care for a loved one with a primary malignant brain tumor. Oncol Nurs Forum. 2011;38(2):149–155. doi:10.1188/11.ONF.149-155
   PubMed Web of Science ®Google Scholar
• Muñoz C, Juarez G, Muñoz ML, et al. The quality of life of patients with malignant gliomas and their caregivers. Soc Work Health Care. 2008;47(4):455–478. doi:10.1080/00981380802232396
   PubMed Web of Science ®Google Scholar
• Piil K, Juhler M, Jakobsen J, Jarden M. Daily life experiences of patients with a high-grade glioma and their caregivers: A longitudinal exploration of rehabilitation and supportive care needs. J Neurosci Nurs. 2015;47(5):271–284. doi:10.1097/JNN.0000000000000158
   PubMed Web of Science ®Google Scholar
• Maercker A, Heim E, Hecker T, Thoma MV. Soziale Unterstützung nach Traumatisierung. Nervenarzt. 2016;88:18–25. doi:10.1007/s00115-016-0242-6
   Google Scholar
• Maercker A, Horn AB. A socio-interpersonal perspective on ptsd: The case for environments and interpersonal processes. Clin Psychol Psychother. 2013;20(6):465–481. doi:10.1002/cpp.1805
   PubMed Web of Science ®Google Scholar
• Frattaroli J. Experimental disclosure and its moderators: A meta-analysis. Psychol Bull. 2006;132(6):823–865. doi:10.1037/0033-2909.132.6.823
   PubMed Web of Science ®Google Scholar
• Porter LS, Keefe FJ, Hurwitz H, Faber M. Disclosure between patients with gastrointestinal cancer and their spouses. Psychooncology 2005;14(12):1030–1042. doi:10.1002/pon.915
   PubMed Web of Science ®Google Scholar
• Manne S, Badr H. Intimacy and relationship processes in couples' psychosocial adaptation to cancer. Cancer 2008;112(S11):2541–2555. doi:10.1002/cncr.23450
   PubMed Web of Science ®Google Scholar
• Pasupathi M, McLean KC, Weeks T. To tell or not to tell: Disclosure and the narrative self. J Pers. 2009;77(1):89–123. doi:10.1111/j.1467-6494.2008.00539.x
   PubMed Web of Science ®Google Scholar
• Dodson TS, Beck JG. Posttraumatic stress disorder symptoms and attitudes about social support: Does shame matter? J Anxiety Disord. 2017;47:106–113. doi:10.1016/j.janxdis.2017.01.005
   PubMed Web of Science ®Google Scholar
• Hoyt T, Pasupathi M, Smith BW, Yeater EA, Kay VS, Tooley E. Disclosure of emotional events in groups at risk for posttraumatic stress disorder. Int. J. Stress Mngmnt. 2010;17(1):78–95. doi:10.1037/a0017453
   Web of Science ®Google Scholar
• Ramm GC, Hasenbring M. Die deutsche Adaptation der Illness-specific Social Support Scale und ihre teststatistische Überprüfung beim Einsatz an Patienten vor und nach Knochenmarktransplantation. Zeitschrift Für Medizinische Psychologie 2003;12:29–38.
   Google Scholar
• Beierlein V, Morfeld M, Bergelt C, Bullinger M, Brähler E. Messung der gesundheitsbezogenen Lebensqualität mit dem SF-8. Diagnostica 2012;58(3):145–153. doi:10.1026/0012-1924/a000068
   Web of Science ®Google Scholar
• Müller J, Beauducel A, Raschka J, Maercker A. Kommunikationsverhalten nach politischer Haft in der DDR–Entwicklung eines Fragebogens zum Offenlegen der Traumaerfahrungen. Zeitschrift Für Politische Psychologie 2000;8:413–427.
   Google Scholar
• Hayes AF. Introduction to Mediation, Moderation, and Conditional Process Analysis: A Regression-Based Approach. New York, NY: Guilford Press; 2013.
   Google Scholar
• Hayes AF. The PROCESS macro for SPSS and SAS. processmacro.org​/​faq.html. Accessed January 9, 2018.
   Google Scholar
• Fischbeck S, Weyer-Elberich V, Zeissig SR, et al. Determinants of illness-specific social support and its relation to distress in long-term melanoma survivors. BMC Public Health. 2018;18(1):511. doi:10.1186/s12889-018-5401-1
   PubMedGoogle Scholar
• Philipp R, Mehnert A, Lehmann C, et al. Detrimental social interactions predict loss of dignity among patients with cancer. Support Care Cancer. 2016;24(6):2751–2758. doi:10.1007/s00520-016-3090-9
   PubMed Web of Science ®Google Scholar
• Revenson TA, Schiaffino KM, Deborah Majerovitz S, Gibofsky A. Social support as a double-edged sword: The relation of positive and problematic support to depression among rheumatoid arthritis patients. Social Sci Med. 1991;33:807–813. doi:10.1016/0277-9536(91)90385-P
   PubMed Web of Science ®Google Scholar
• Köhler M, Schäfer H, Goebel S, Pedersen A. The role of disclosure attitudes in the relationship between posttraumatic stress disorder symptom severity and perceived social support among emergency service workers. Psychiatry Res. 2018;270:602–610. doi:10.1016/j.psychres.2018.10.049
   PubMed Web of Science ®Google Scholar
• Müller J, Moergeli H, Maercker A. Disclosure and social acknowledgement as predictors of recovery from posttraumatic stress: A longitudinal study in crime victims. Can J Psychiatry. 2008;53:160–168. doi:10.1177/070674370805300306
   PubMed Web of Science ®Google Scholar
• Hawkley LC, Cacioppo JT. Loneliness and pathways to disease. Brain, Behav Immun. 2003;17(1):98–105. doi:10.1016/S0889-1591(02)00073-9
   PubMed Web of Science ®Google Scholar
• Pielmaier L, Maercker A. Psychological adaptation to life-threatening injury in dyads: The role of dysfunctional disclosure of trauma. Eur J Psychotraumatol 2011;2:8749. doi:10.3402/ejpt.v2i0.8749
   PubMed Web of Science ®Google Scholar
• Lezak MD, Howieson DB, Bigler ED, Tranel D. Neuropsychological Assessment. Oxford: Oxford Univeristy Press; 2012.
   Google Scholar
• McLean CP, Foa EB. Emotions and emotion regulation in posttraumatic stress disorder. Curr Opin Psychol. 2017;14:72–77. doi:10.1016/j.copsyc.2016.10.006
   PubMed Web of Science ®Google Scholar
• Goebel S, Strenge H, Mehdorn HM. Acute stress in patients with brain cancer during primary care. Support Care Cancer. 2012;20(7):1425–1434. doi:10.1007/s00520-011-1225-6
   PubMed Web of Science ®Google Scholar
• Mehnert A, Vehling S, Scheffold K, et al. Prävalenz von Anpassungsstörung, Akuter und Posttraumatischer Belastungsstörung sowie somatoformen Störungen bei Krebspatienten. Psychother Psych Med. 2013;63:466–472. doi:10.1055/s-0033-1347197
   Google Scholar
• Pennebaker JW, Harber KD. A Social Stage Model of Collective Coping: The Loma Prieta Earthquake and The Persian Gulf War. J Social Isssues. 1993;49(4):125–145. doi:10.1111/j.1540-4560.1993.tb01184.x
   Web of Science ®Google Scholar