Effectiveness of storytelling interventions on psychosocial outcomes in adult patients with a life-threatening illness: a systematic review protocol

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1 Effectiveness of storytelling interventions on psychosocial outcomes in adult patients with a life-threatening illness: a systematic review protocol Mai Nanna Schoenau 1,2 Inger Marie Jackson 1,2 1 University Hospital of Copenhagen, Rigshospitalet, The Heart Centre, Department of Cardiothoracic Surgery, Copenhagen, Øresund, Denmark, 2 Danish Centre of Systematic Reviews in Nursing: an Affiliate Centre of the Joanna Briggs Institute Review question/objective: The objective of this review is to identify the effectiveness of storytelling interventions on psychosocial outcomes. In this review, storytelling is where adult patients with a life-threatening illness tell their illness story, facilitated by a healthcare professional. Specifically the review questions are: What effect does storytelling interventions have on adult patients with a life-threatening illness with regard to depression, anxiety, distress, satisfaction with life, quality of life, stress and coping? What is the effectiveness of different formats of storytelling interventions (dyad or group) on adult patients with a lifethreatening illness? What is the effectiveness of storytelling interventions of different intensities (number, duration and frequency of sessions) on adult patients with a life-threatening illness? Keywords Life-threatening illness; narratives; psychosocial; storytelling Background E very human being is a storyteller, and we are all surrounded by stories. What did you do yesterday? What is your job? What happened when you got ill? We all tell stories, and consequently, everyday life is filled with many stories. Storytelling takes place in every culture in the form of entertainment, education, cultural preservation and instilling moral values. The theoretical concept of narratives emerges from stories and storytelling. Narrative theory considers stories as a construction of our life. 1 Narrative theory also covers a special analytical, theoretical or practical way of working with stories. 1,2 In this review, we use the word storytelling rather than narrative to illustrate the process of telling a story, rather than the product of narration. Storytelling is an essential part of life, as it is often used as a way of explaining who we are as individual human beings, who we wish to be and what values we hold. Hence, among the fundamental functions Correspondence: Mai Nanna Schoenau, mai.nanna.schoenau@ regionh.dk There is no conflict of interest in this project. DOI: /JBISRIR of stories and storytelling is creating and maintaining an identity. 1 6 Narrative theories stress that stories constitute our self-understanding and create meaning in our life. 4,5 Letting people tell their story gives them a feeling of participation and involvement in their own lives. 7 Previous research in medical anthropology by Kleinman 8 and Mattingly 9,10 has described the therapeutic potential of narratives of illness. Research has described how stories create a method for organizing and shaping people s experiences and thoughts, but also how storytelling enables a translation of psychological and emotional distress into a language that allows people to forget or move beyond their experience. 1,4,5,11 Research shows that telling your story after a traumatic event, such as a life-threatening illness, is a fundamental need and may promote health. 4,5,11 In addition, the inability to share one s story can cause psychological distress. Narrative theories say that inviting people, who have experienced a life-threatening illness, to tell their illness story gives them an opportunity to replace a restrictive story about their identity and illness with a more nuanced story that is based on lived experiences, values, dreams and hopes. Illness stories allow patients to make sense of their JBI Database of Systematic Reviews and Implementation Reports ß 2016 THE JOANNA BRIGGS INSTITUTE 52

2 suffering. They offer a biographic and social context of the experience of illness and suggest coping strategies. They also create potential for personal development. 12 Storytelling has been carried out in many different ways, with various purposes and for people with many kinds of illnesses. For example, as an educational strategy for people with chronic illness, 13 as a way of creating hope in children with cancer 14 and as a way to break social isolation for people with breast cancer. 15,16 This review will focus on the use of storytelling, defined as a two-way interaction between a storyteller and a listener. The listener is an educated healthcare professional, who has the role of encouraging the storyteller to verbally tell his/ her story. The storyteller in this review is defined as an adult patient suffering from a life-threatening illness, for example, but not limited to, cancer, cardiovascular diseases or stroke. This review will explore if and how storytelling can be used to improve patients psychosocial consequences of illness. Furthermore, this review will explore the effectiveness of different formats and intensities of storytelling. Format refers to the way in which the intervention is carried out, whether it is an individual session between a health professional and a patient, or in a group interaction between a group of patients and a health professional. Intensity refers to the number of sessions that the intervention consists of, whether it is a one-off session, or it is a session repeated over a specific period of time. This is an important aspect in the planning of future interventions, including storytelling. In-depth understanding bolstered by research in this area will be useful in clinical practice for developing intervention programs. Identifying the effects of storytelling interventions will greatly increase the level of awareness among researchers and healthcare professionals, and thus help to improve psychosocial care for a patient with a life-threatening illness. An initial search in PubMed, CINAHL, PsychINFO, JBI Database of Systematic Reviews and Implementation Reports, PROSPERO and Cochrane Library indicated that no systematic review on the effect of storytelling interventions exists or is currently underway. Therefore, a systematic review on the effectiveness of storytelling interventions on psychosocial outcomes in adult patients with a life-threatening illness is warranted. Inclusion criteria Types of participants The review will consider studies that include adult patients aged 18 years or over with a life-threatening illness, irrespective of gender and race. Life-threatening illnesses include but are not limited to, cancer, heart disease, AIDS, chronic obstructive pulmonary disease and stroke. Types of interventions The review will consider studies that evaluate a storytelling intervention compared with usual care (i.e. no intervention) or compared with pre- and post-intervention. This review will include studies in which a storytelling intervention is the only intervention used, but will exclude studies that combine storytelling with any other intervention in the experimental group. The included studies must have explicit descriptions of the storytelling intervention regarding format and intensity. Outcomes The outcome of interest will be psychosocial outcomes measured with validated instruments, such as, but not limited to: Depression, anxiety, distress and satisfaction with life measured with Hospital Anxiety and Depression Scale, 17 Brief Depression Rating scale, 18 Hopkins symptom check list eight items, 19 Distress Thermometer 20 and Satisfaction With Life Scale. 21 Quality of life, stress and coping measured with Short Form Health Survey (SF-36), 22 Cantril s Ladder scale 23 and Index of Clinical Stress. 24 Types of studies The review will consider both experimental and epidemiological study designs, including randomized controlled trials, non-randomized controlled trials, quasi-experimental studies, before and after studies, prospective and retrospective cohort studies, case-control studies, pilot studies and analytical cross-sectional studies for inclusion. This review will also consider descriptive epidemiological study designs, including case series, individual case reports and descriptive cross-sectional studies for inclusion. Search strategy The search strategy aims to find both published and unpublished studies. A three-step search strategy will JBI Database of Systematic Reviews and Implementation Reports ß 2016 THE JOANNA BRIGGS INSTITUTE 53

3 be utilized in this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by an analysis of the text words contained in the title and abstract as well as of the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Third, the reference list of all identified reports and articles will be searched for additional studies. Studies published in English, Danish, Swedish or Norwegian will be considered for inclusion in this review. Databases considered for inclusion in this review will be searched from inception. The databases to be searched include: PubMed, CINAHL, PsycINFO, Scopus, SWEmed and Embase. The search for unpublished studies will include: Grey Literature Report, OpenGrey and MedNar. Initial keywords to be used will be: Storytelling, storytelling intervention, narrative intervention, narrative interview. Psychosocial, depression, anxiety, distress, satisfaction with life, quality of life, stress and coping. Assessment of methodological quality Papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Meta-Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI) (Appendix I). Any disagreements arising between the reviewers will be resolved through discussion or with a third reviewer. Data extraction Quantitative data will be extracted from papers included in the review using the standardized data extraction tool from JBI-MAStARI (Appendix II). The data extracted will include specific details about the interventions, populations, study methods and outcomes of significance to the review question and specific objectives. Data synthesis Quantitative data will, where possible, be pooled in statistical meta-analysis using JBI-MAStARI. All results will be subject to double data entry. Effect sizes expressed as weighted mean differences (for continuous data) and their 95% confidence intervals will be calculated for analysis. Heterogeneity will be assessed statistically using the standard chi-square and also explored using subgroup analyses based on the different study designs included in this review. Sub-analyses will, where possible, be done in regard to different format and intensities of storytelling interventions. Sub-analysis on different life-threatening illness will not be performed, as this is not the objective of this review. In cases in which statistical pooling is not possible, the findings will be presented in narrative form, including tables and figures to support data presentation where appropriate. References 1. Polkinghorne DE. Narrative knowing and the human sciences. Albany, NY: State University of New York Press; Ricoeur P. Time and narrative. Chicago, IL: University of Chicago Press; Frank AW. Health stories as connectors and subjectifiers. Health (London) 2006;10(4): Frank AW. Letting stories breathe: a socio-narratology Chicago, IL: University of Chicago Press; Frank AW. The wounded storyteller: body, illness, and ethics. 2nd ed Chicago, IL: The University of Chicago Press; Martinsen K. Care and vulnerability. 1st ed Oslo: Akribe; Jackson M. The politics of storytelling: violence, transgression, and intersubjectivity Copenhagen: Museum Tusculanum; Kleinman A. The illness narratives: suffering, healing, and the human condition New York, NY: Basic Books; Mattingly C. Healing dramas and clinical plots: the narrative structure of experience Cambridge: Cambridge University Press; Mattingly C, Garro LC. Narrative and the cultural construction of illness and healing. Berkeley: Calif University of California Press; Evans BC, Crogan NL, Bendel R. Storytelling intervention for patients with cancer: Part 1 development and implementation. Oncol Nurs Forum 2008;35(2): Kalitzkus V, Matthiessen PF. Narrative-based medicine: potential, pitfalls, and practice. Perm J 2009;13(1): Cangelosi PR, Sorrell JM. Storytelling as an educational strategy for older adults with chronic illness. J Psychosoc Nur Mental Health Services 2008;46(7): Hedtke L. Creating stories of hope: a narrative approach to illness, death and grief. Aust N Z J Fam Ther 2014;35(1): Hoybye MT, Johansen C, Tjoernhoej-Thomsen T. Online interaction. Effects of storytelling in an internet breast cancer support group. Psycho-Oncology 2005;14(3): Oxford University Press. Oxford advanced learner s dictionary. Oxford: Oxford University Press; JBI Database of Systematic Reviews and Implementation Reports ß 2016 THE JOANNA BRIGGS INSTITUTE 54

4 17. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983;67(6): Kellner R. The brief depression rating scale. In: Sartorius N, Ban T, editors. Assesment of depression. Springer-Verlag; 1986: Lipman RS, Covi L, Shapiro AK. The Hopkins Symptom Checklist (HSCL) factors derived from the HSCL-90. J Affect Disord 1979;1(1): Roth AJ, Kornblith AB, Batel-Copel L, Peabody E, Scher HI, Holland JC. Rapid screening for psychologic distress in men with prostate carcinoma: a pilot study. Cancer 1998;82(10): Diener E, Emmons RA, Larsen RJ, Griffin S. The satisfaction with life scale. J Person Asses 1985;49(1): Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992;30: Kilpatrick FP, Cantril H. Self-anchoring scaling: a measure of individual s unique reality world. J Individ Psychol 1960; 16(2): Abell N. The index of clinical stress: a brief measure of subjective stress for practice and research. Soc Work Res Abstr; 27(2): JBI Database of Systematic Reviews and Implementation Reports ß 2016 THE JOANNA BRIGGS INSTITUTE 55

5 Appendix I: Appraisal instruments MAStARI appraisal instruments JBI Database of Systematic Reviews and Implementation Reports ß 2016 THE JOANNA BRIGGS INSTITUTE 56

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8 Appendix II: Data extraction instruments MAStARI data extraction instruments JBI Database of Systematic Reviews and Implementation Reports ß 2016 THE JOANNA BRIGGS INSTITUTE 59

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