The social trajectory of brain tumor: a qualitative metasynthesis

References

• Dolecek TA, Propp JM, Stroup NE, et al. CBTRUS statistical report: primary brain and central nervous system tumors diagnosed in the United States in 2005–2009. Neuro-Oncology. 2012;14:v1–v49.
   PubMed Web of Science ®Google Scholar
• Health AIo. Australia's Health 2012: In Brief: AIHW; 2012.
   Google Scholar
• Louis DN, Ohgaki H, Wiestler OD, et al. The 2007 WHO classification of tumours of the central nervous system. Acta Neuropathol. 2007;114:97–109.
   PubMed Web of Science ®Google Scholar
• Ostrom QT, Gittleman H, Liao P, et al. CBTRUS statistical report: primary brain and central nervous system tumors diagnosed in the United States in 2007–2011. Neuro-Oncology. 2014;16:iv1–iv63.
   PubMed Web of Science ®Google Scholar
• Goebel S, Mehdorn HM. Measurement of psychological distress in patients with intracranial tumours: the NCCN distress thermometer. J Neurooncol. 2011;104:357–364.
   PubMed Web of Science ®Google Scholar
• Goebel S, von Harscher M, 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;19:1797–1805.
   PubMed Web of Science ®Google Scholar
• Ownsworth T, Chambers S, Damborg E, et al. Evaluation of the making sense of brain tumor program: a randomized controlled trial of a home‐based psychosocial intervention. Psycho‐Oncology. 2015;24:540–547.
   PubMed Web of Science ®Google Scholar
• Lidstone V, Butters E, Seed P, et al. Symptoms and concerns amongst cancer outpatients: identifying the need for specialist palliative care. Palliat Med. 2003;17:588–595.
   PubMed Web of Science ®Google Scholar
• Klein M, Taphoorn MJ, Heimans JJ, et al. Neurobehavioral status and health-related quality of life in newly diagnosed high-grade glioma patients. J Clin Oncol. 2001;19:4037–4047.
   PubMed Web of Science ®Google Scholar
• Ownsworth T, Hawkes A, Steginga S, et al. A biopsychosocial perspective on adjustment and quality of life following brain tumor: a systematic evaluation of the literature. Disabil Rehabil. 2009;31:1038–1055.
   PubMed Web of Science ®Google Scholar
• Worchel S, Austin W. Psychology of intergroup relations. Chicago: Nelson-Hall; 1986.
   Google Scholar
• Jetten J, Haslam C, Alexander SH. The social cure: identity, health and well-being. New York: Psychology Press; 2012.
   Google Scholar
• Haslam SA, Jetten J, Postmes T, et al. Social identity, health and well‐being: an emerging agenda for applied psychology. Appl Psychol. 2009;58:1–23.
   Web of Science ®Google Scholar
• Cruwys T, Dingle GA, Haslam C, et al. Social group memberships protect against future depression, alleviate depression symptoms and prevent depression relapse. Soc Sci Med. 2013;98:179–186.
   PubMed Web of Science ®Google Scholar
• Eisenberger NI, Lieberman MD, Williams KD. Does rejection hurt? An fMRI study of social exclusion. Science. 2003;302:290–292.
   PubMed Web of Science ®Google Scholar
• Schwarzer R, Bowler RM, Cone JE. Social integration buffers stress in New York police after the 9/11 terrorist attack. Anxiety Stress Coping. 2014;27:18–26.
   PubMed Web of Science ®Google Scholar
• Schwarzer R, Knoll N, Rieckmann N. Social support. Health Psychol. 2004;158:181.
   Google Scholar
• Boden-Albala B, Litwak E, Elkind M, et al. Social isolation and outcomes post stroke. Neurology. 2005;64:1888–1892.
   PubMed Web of Science ®Google Scholar
• Haslam C, Holme A, Haslam SA, et al. Maintaining group memberships: social identity continuity predicts well-being after stroke. Neuropsychol Rehabil. 2008;18:671–691.
   PubMed Web of Science ®Google Scholar
• Sandelowski M, Docherty S, Emden C. Focus on qualitative methods Qualitative metasynthesis: issues and techniques. Res Nurs Health. 1997;20:365–372.
   PubMed Web of Science ®Google Scholar
• Kersten P, Ellis-Hill C, McPherson KM, et al. Beyond the RCT–understanding the relationship between interventions, individuals and outcome–the example of neurological rehabilitation. Disabil Rehabil. 2010;32:1028–1034.
   PubMed Web of Science ®Google Scholar
• Salter K, Hellings C, Foley N, et al. The experience of living with stroke: a qualitative meta-synthesis. J Rehabil Med. 2008;40:595–602.
   PubMed Web of Science ®Google Scholar
• Levack WM, Kayes NM, Fadyl JK. Experience of recovery and outcome following traumatic brain injury: a metasynthesis of qualitative research. Disabil Rehabil. 2010;32:986–999.
   PubMed Web of Science ®Google Scholar
• Christensen ME, Brincks J, Schnieber A, et al. The intention to exercise and the execution of exercise among persons with multiple sclerosis–a qualitative metasynthesis. Disabil Rehabil. 2016;38:1023–1033.
   PubMed Web of Science ®Google Scholar
• Campbell R, Pound P, Pope C, et al. Evaluating meta-ethnography: a synthesis of qualitative research on lay experiences of diabetes and diabetes care. Soc Sci Med. 2003;56:671–684.
   PubMed Web of Science ®Google Scholar
• Bennion A, Molassiotis A. Qualitative research into the symptom experiences of adult cancer patients after treatments: a systematic review and meta-synthesis. Support Care Cancer. 2013;21:9–25.
   PubMed Web of Science ®Google Scholar
• Sandelowski M, Barroso J. Handbook for synthesizing qualitative research. New York: Springer Publishing Company; 2006.
   Google Scholar
• Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19:349–357.
   PubMed Web of Science ®Google Scholar
• Edvardsson T, Påhlson A, Ahlstrom G. Experiences of onset and diagnosis of low-grade glioma from the patient's perspective. Cancer Nurs. 2006;29:415–422.
   PubMed Web of Science ®Google Scholar
• Lovely MP, Stewart-Amidei C, Page M, et al. A new reality: long-term survivorship with a malignant brain tumor. Oncol Nurs Forum. 2013;40:267–274.
   PubMed Web of Science ®Google Scholar
• Janda M, Eakin EG, Bailey L, et al. Supportive care needs of people with brain tumours and their carers. Support Care Cancer. 2006;14:1094–1103.
   PubMed Web of Science ®Google Scholar
• Ownsworth T, Chambers S, Hawkes A, et al. Making sense of brain tumour: a qualitative investigation of personal and social processes of adjustment. Neuropsychol Rehabil. 2011;21:117–137.
   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;19:383–390.
   PubMed Web of Science ®Google Scholar
• Cavers D, Hacking B, Erridge SE, et al. Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study. Can Med Assoc J. 2012;184:E373–E382.
   PubMed Web of Science ®Google Scholar
• Piil K, Juhler M, Jakobsen J, et al. 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;47:271–284.
   PubMed Web of Science ®Google Scholar
• Salander P, Bergenheim AT, Henriksson R. How was life after treatment of a malignant brain tumour? Soc Sci Med. 2000;51:589–598. 10p.
   PubMed Web of Science ®Google Scholar
• Strang S, Strang P. Spiritual thoughts, coping and ‘sense of coherence’ in brain tumour patients and their spouses. J Palliat Med. 2001;15:127–134.
   Web of Science ®Google Scholar
• Wideheim A, Edvardsson T, Påhlson A, et al. A family’s perspective on living with a highly malignant brain tumor. Cancer Nurs. 2002;25:236–244.
   PubMed Web of Science ®Google Scholar
• Wong J, Mendelsohn D, Nyhof-Young J, et al. A qualitative assessment of the supportive care and resource needs of patients undergoing craniotomy for benign brain tumours. Support Care Cancer. 2011;19:1841–1848.
   PubMed Web of Science ®Google Scholar
• Cornwell P, Dicks B, Fleming J, et al. Care and support needs of patients and carers early post-discharge following treatment for non-malignant brain tumour: establishing a new reality. Support Care Cancer. 2012;20:2595–2610.
   PubMed Web of Science ®Google Scholar
• Carrion IV, Nedjat-Haiem FR, Marquez DX. Examining cultural factors that influence treatment decisions: a pilot study of Latino men with cancer. J Canc Educ. 2013;28:729–737.
   PubMed Web of Science ®Google Scholar
• Edvardsson T, Ahlstrom G. Illness-related problems and coping among persons with low-grade glioma. Psychooncology. 2005;14:728–737.
   PubMed Web of Science ®Google Scholar
• Koivukangas P, Koivukangas J. Role of quality of life in therapeutic strategies in brain tumors. Health Policy. 1988;10:241–257.
   PubMed Web of Science ®Google Scholar
• Halkett GK, Lobb EA, Oldham L, et al. The information and support needs of patients diagnosed with High Grade Glioma. Patient Educ Couns. 2010;79:112–119.
   PubMed Web of Science ®Google Scholar
• Birudu R, Pandey P, Arivazhagan A, Krishna Reddy N, Santosh V. Qualitative Study on Psychosocial Needs of Persons with Glioblastoma in India. Bangalore: National Institute of Mental Health and Neuro Sciences. 2014.
   Google Scholar
• Wenström I, Eriksson LE, Ebbeskog B. Living in a paradox-women's experiences of body and life-world after meningioma surgery. J Adv Nurs. 2012;68:559–568.
   PubMed Web of Science ®Google Scholar
• Shin JY, Kizilbash SH, Robinson SI, et al. Seizures in patients with primary brain tumors: what is their psychosocial impact? J Neurooncol. 2016;128:285–291.
   PubMed Web of Science ®Google Scholar
• Salander P, Spetz A. How do patients and spouses deal with the serious facts of malignant glioma? Palliat Med. 2002;16:305–313.
   PubMed Web of Science ®Google Scholar
• Adelbratt S, Strang P. Death anxiety in brain tumour patients and their spouses. Palliat Med. 2000;14:499–507.
   PubMed Web of Science ®Google Scholar
• Chambers SK, Dunn J, Occhipinti S, et al. A systematic review of the impact of stigma and nihilism on lung cancer outcomes. BMC Cancer. 2012;12:1.
   PubMed Web of Science ®Google Scholar
• Chambers SK, Grassi L, Hyde MK, et al. Integrating psychosocial care into neuro-oncology: challenges and strategies. Front Oncol. 2015;5:41.
   PubMed Web of Science ®Google Scholar
• Fox S, Lantz C. The brain tumor experience and quality of life: a qualitative study. J Neurosci Nurs. 1998;30:245–252.
   PubMedGoogle Scholar
• Tabuteau-Harrison SL, Haslam C, Mewse AJ. Adjusting to living with multiple sclerosis: the role of social groups. Neuropsychol Rehabil. 2016;26:36–59.
   PubMed Web of Science ®Google Scholar
• Martin R, Levack WM, Sinnott KA. Life goals and social identity in people with severe acquired brain injury: an interpretative phenomenological analysis. Disabil Rehabil. 2015;37:1234–1241.
   PubMed Web of Science ®Google Scholar
• Ownsworth T, Henderson L, Chambers SK. Social support buffers the impact of functional impairments on caregiver psychological well-being in the context of brain tumor and other cancers. Psychooncology. 2010;19:1116–1122.
   PubMed Web of Science ®Google Scholar
• Weitzner MA, Meyers CA, Byrne K. Psychosocial functioning and quality of life in patients with primary brain tumors. J Neurosurg. 1996;84:29–34.
   PubMed Web of Science ®Google Scholar
• Lipsman N, Skanda A, Kimmelman J, et al. The attitudes of brain cancer patients and their caregivers towards death and dying: a qualitative study. BMC Palliat Care. 2007;6:7.
   PubMedGoogle Scholar
• Ownsworth T, Goadby E, Chambers SK. Support after brain tumor means different things: family caregivers’ experiences of support and relationship changes. Front Oncol. 2015;5:33.
   PubMed Web of Science ®Google Scholar
• Schubart JR, Kinzie MB, Farace E. Caring for the brain tumor patient: family caregiver burden and unmet needs. Neuro-Oncology. 2008;10:61–72.
   PubMed Web of Science ®Google Scholar
• Aldape K, Zadeh G, Mansouri S, et al. Glioblastoma: pathology, molecular mechanisms and markers. Acta Neuropathol. 2015;129:829–848.
   PubMed Web of Science ®Google Scholar
• Mirimanoff R-O, Gorlia T, Mason W, et al. Radiotherapy and temozolomide for newly diagnosed glioblastoma: recursive partitioning analysis of the EORTC 26981/22981-NCIC CE3 phase III randomized trial. JCO. 2006;24:2563–2569.
   PubMed Web of Science ®Google Scholar
• Ownsworth T. Coping with the unthinkable: psychosocial advances in the management of primary brain tumour. Brain Impair. 2016;17:265–272.
   Web of Science ®Google Scholar
• Langbecker D, Janda M. Systematic review of interventions to improve the provision of information for adults with primary brain tumors and their caregivers. Front Oncol. 2015;5:111–121.
   PubMed Web of Science ®Google Scholar
• Khan F, Amatya B, Physio B, et al. Effectiveness of integrated multidisciplinary rehabilitation in primary brain cancer survivors in an Australian community cohort: a controlled clinical trial. J Rehabil Med. 2014;46:754–760.
   PubMed Web of Science ®Google Scholar
• Whiting D, Simpson G, Koh E-S, et al. A multi-tiered intervention to address behavioural and cognitive changes after diagnosis of primary brain tumour: a feasibility study. Brain Injury. 2012;26:950–961.
   PubMed Web of Science ®Google Scholar
• Khan F, Amatya B, Rajapaksa I, et al. Outcomes of social support programs in brain cancer survivors in an Australian community cohort: a prospective study. J Rehabil Med. 2013;1:24–33.
   Google Scholar
• Ownsworth T. Self-identity after brain injury. New York: Psychology Press; 2014.
   Google Scholar