Applied Science, Faculty of
Nursing, School of
DSpace
UBCV
Lee, Olivia Nicole
Master of Science in Nursing - MSN
University of British Columbia
Background: Psychosocial challenges in adolescents and young adults (AYAs) affected by cancer encompass wide-ranging concerns, including emotional distress, impaired cognition, reduced self-concept, existential concerns, sexual and reproductive health issues, interruptions to education and/or employment, and strained relationships, which can have negative implications on quality of life. The prevalence of psychosocial challenges has been estimated to impact over 60% of AYAs affected by cancer. Yet, no synthesis of qualitative evidence describing psychosocial challenges from the perspectives of AYAs themselves has been conducted leaving important knowledge gaps. Further, healthcare providers (HCPs) have described lacking AYA- specific knowledge and skills to deliver age-tailored cancer care, possibly hindering their capacity to support this population. Objective: The primary objective of this systematic review was to appraise and synthesize qualitative evidence regarding the psychosocial challenges in AYAs affected by cancer. A secondary objective was to discuss implications for HCPs caring for this population. Methods: MEDLINE, CINAHL, and PsycINFO were searched for qualitative studies published between 2006 and July 13, 2023. Included studies reported on psychosocial challenges experienced by AYAs, diagnosed with any cancer, between the ages of 15 and 39. A meta- aggregative approach was utilized to synthesize data and report the findings. Findings: Forty-seven articles were included and 13 distinct psychosocial challenges were generated that were organized into 4 overarching themes: (1) physical, (2) psychological, (3) interpersonal, and (4) daily living challenges. Clinical implications for HCPs were discussed in 25 articles and synthesized into 4 thematic findings: (1) providing information; (2) shared decision-making; (3) connecting to resources; and (4) assessing and affirming. Conclusion: This systematic review of qualitative research extends extant literature, affording an integrated and nuanced understanding of the psychosocial challenges in AYAs affected by a cancer experience. The findings provide insights that HCPs may utilize to better address the psychosocial challenges of this unique population through age-tailored and effective care.
PSYCHOSOCIAL CHALLENGES IN ADOLESCENTS AND YOUNG ADULTS AFFECTED BY CANCER: A SYSTEMATIC REVIEW OF QUALITATIVE RESEARCH by Olivia Nicole Lee B.N., University of Calgary, 2017 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) April 2024 © Olivia Nicole Lee, 2024 ii The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the thesis entitled: PSYCHOSOCIAL CHALLENGES IN ADOLESCENTS AND YOUNG ADULTS AFFECTED BY CANCER: A SYSTEMATIC REVIEW OF QUALITATIVE RESEARCH submitted by Olivia Nicole Lee in partial fulfillment of the requirements for the degree of Master of Science in Nursing in Nursing Examining Committee: Dr. Kristen Haase, Assistant Professor, School of Nursing, UBC Supervisor Dr. Amanda Wurz, Assistant Professor, School of Kinesiology, University of the Fraser Valley Supervisory Committee Member Dr. John Oliffe, Professor, School of Nursing, UBC Supervisory Committee Member iii Abstract Background: Psychosocial challenges in adolescents and young adults (AYAs) affected by cancer encompass wide-ranging concerns, including emotional distress, impaired cognition, reduced self-concept, existential concerns, sexual and reproductive health issues, interruptions to education and/or employment, and strained relationships, which can have negative implications on quality of life. The prevalence of psychosocial challenges has been estimated to impact over 60% of AYAs affected by cancer. Yet, no synthesis of qualitative evidence describing psychosocial challenges from the perspectives of AYAs themselves has been conducted leaving important knowledge gaps. Further, healthcare providers (HCPs) have described lacking AYA-specific knowledge and skills to deliver age-tailored cancer care, possibly hindering their capacity to support this population. Objective: The primary objective of this systematic review was to appraise and synthesize qualitative evidence regarding the psychosocial challenges in AYAs affected by cancer. A secondary objective was to discuss implications for HCPs caring for this population. Methods: MEDLINE, CINAHL, and PsycINFO were searched for qualitative studies published between 2006 and July 13, 2023. Included studies reported on psychosocial challenges experienced by AYAs, diagnosed with any cancer, between the ages of 15 and 39. A meta-aggregative approach was utilized to synthesize data and report the findings. Findings: Forty-seven articles were included and 13 distinct psychosocial challenges were generated that were organized into 4 overarching themes: (1) physical, (2) psychological, (3) interpersonal, and (4) daily living challenges. Clinical implications for HCPs were discussed in 25 articles and synthesized into 4 thematic findings: (1) providing information; (2) shared decision-making; (3) connecting to resources; and (4) assessing and affirming. iv Conclusion: This systematic review of qualitative research extends extant literature, affording an integrated and nuanced understanding of the psychosocial challenges in AYAs affected by a cancer experience. The findings provide insights that HCPs may utilize to better address the psychosocial challenges of this unique population through age-tailored and effective care. v Lay Summary A cancer diagnosis and treatment can cause unique mental, social, and emotional challenges for adolescents and young adults (AYAs) aged 15 to 39. These issues can cover emotional distress, changes in thinking and memory, low self-esteem, problems with sexuality and reproduction, interruptions to work and/or school, and changes to relationships, which can negatively affect AYAs’ wellbeing. However, little work has been done to summarize the range of research that reports on the challenges AYAs face from their own perspective. Many healthcare providers (HCPs) feel they cannot support AYAs well because they lack the knowledge and skills to do so. The goal of this work was to gain a better understanding of the mental, social, and emotional challenges in AYAs affected by cancer, from their own perspective. The results of this research may educate and guide HCPs in caring for this population and addressing the range of issues they face. vi Preface This thesis represents the original unpublished work by the author, Olivia Lee. Olivia Lee made substantial contributions to the conception and design of the study, completed the literature review, data collection, data analysis, and interpretation, and wrote the full thesis with the guidance of the primary supervisor, Dr. Kristen Haase, and committee members, Dr. Amanda Wurz and Dr. John Oliffe. Dr. Kristen Haase assisted with the conception and design of the study, screened 10% of the articles for inclusion, and assisted with thesis revisions. The supervisory committee, Dr. Amanda Wurz and Dr. John Oliffe, assisted with the conception and design of the study and thesis revisions. All authors read and approved the final thesis. Ethics approval was not required for this study. vii Table of Contents Abstract ......................................................................................................................................... iii Lay Summary ................................................................................................................................. v Preface ........................................................................................................................................... vi Table of Contents ......................................................................................................................... vii List of Tables .................................................................................................................................. x List of Figures ............................................................................................................................... xi List of Abbreviations ................................................................................................................... xii Glossary ....................................................................................................................................... xiii Acknowledgements ..................................................................................................................... xiv Dedication ..................................................................................................................................... xv Chapter 1: Introduction ................................................................................................................ 1 1.1 Statement of Purpose ....................................................................................................... 3 1.2 Review Questions ............................................................................................................ 4 Chapter 2: Methods ....................................................................................................................... 5 2.1 Search Strategy ................................................................................................................ 5 2.2 Eligibility Criteria ............................................................................................................ 5 2.3 Study Selection ................................................................................................................ 6 2.4 Data Extraction ................................................................................................................ 6 2.5 Assessment of Methodological Quality ........................................................................... 6 2.6 Data Synthesis ................................................................................................................. 7 2.7 Rigour .............................................................................................................................. 7 2.8 Protocol Registration ....................................................................................................... 8 viii Chapter 3: Findings ....................................................................................................................... 9 3.1 Physical Challenges ....................................................................................................... 17 3.1.1 Changed Body ........................................................................................................... 18 3.1.2 Infertility .................................................................................................................... 19 3.2 Psychological Challenges .............................................................................................. 19 3.2.1 Loss ............................................................................................................................ 20 3.2.2 Isolation ..................................................................................................................... 21 3.2.3 Uncertainty ................................................................................................................ 22 3.2.4 Autonomy .................................................................................................................. 23 3.2.5 Identity ....................................................................................................................... 23 3.2.6 Mood Changes ........................................................................................................... 24 3.2.7 Seeking Normality ..................................................................................................... 26 3.3 Interpersonal Challenges ............................................................................................... 27 3.3.1 Relationships ............................................................................................................. 27 3.3.2 Sexuality .................................................................................................................... 28 3.4 Daily Living Challenges ................................................................................................ 29 3.4.1 Cognition ................................................................................................................... 29 3.4.2 Education and Employment ...................................................................................... 30 3.5 Healthcare Provider Implications .................................................................................. 31 3.5.1 Providing Information ............................................................................................... 31 3.5.2 Shared Decision-Making ........................................................................................... 32 3.5.3 Connecting to Resources ........................................................................................... 33 3.5.4 Assessing and Affirming ........................................................................................... 34 ix Chapter 4: Discussion & Limitations ........................................................................................ 35 4.1 Limitations ..................................................................................................................... 37 Chapter 5: Implications & Conclusion ...................................................................................... 39 5.1 Conclusion ..................................................................................................................... 40 Bibliography ................................................................................................................................. 41 Appendices ................................................................................................................................... 49 Appendix A: Search Strategy in MEDLINE ............................................................................. 49 Appendix B: Study Appraisal using the JBI Qualitative Critical Appraisal Criteria ................ 50 x List of Tables Table 1: Characteristics of the Included Studies ........................................................................... 11 xi List of Figures Figure 1: PRISMA Flow Diagram ................................................................................................ 10 Figure 2: Domains of Psychosocial Challenges ............................................................................ 17 xii List of Abbreviations AYA. adolescent and young adult HCP. healthcare provider JBI. Joanna Briggs Institute xiii Glossary Adolescent and Young Adult. A person between the ages of 15 and 39 years old. Adolescent and Young Adult Oncology. A specialty practice situated between the traditional fields of pediatric and adult oncology that focuses on cancer in those 15 to 39 years old (1). Psychosocial challenges. Psychosocial challenges encompass a wide range of concerns that are not considered medical or somatic. They can affect an individual’s functioning and are often a consequence of social factors on psychological health and behavior (2,3). xiv Acknowledgements I would like to express my deepest gratitude to the faculty, staff, and my fellow students at the UBC School of Nursing, whom I have had the pleasure of learning from in this academic community. This thesis has been a journey filled with learning and growth, and it would not have been possible without the support and guidance of numerous individuals. First and foremost, I want to extend my utmost appreciation to my thesis supervisor, Kristen. Your passion for teaching and research inspired me from the very beginning of my journey as a graduate student. Thank you for your insightful feedback and invaluable guidance throughout the research and writing process. You have encouraged me to always pursue excellence in my studies and enhanced my work in countless ways through your expertise. It has been a pleasure and a privilege to learn from you these past two years. I am also immensely grateful to the members of my thesis committee, Amanda and John, for your constructive criticism and thoughtful insights. Your perspectives and expertise have been instrumental in shaping both the direction and content of my research. I am thankful for your contributions and to have had the opportunity to work with you both. I would also like to express my sincere gratitude to Katherine Miller, whose expertise in database searching was essential in developing my comprehensive search strategy. Lastly, I want to thank my family, partner, and friends for their love, patience, and unwavering support. Thank you for believing in me and providing me with endless encouragement. I am forever grateful for all you have done for me. xv Dedication I want to dedicate this project to all the AYAs who have been diagnosed with cancer and may be struggling with psychosocial challenges as a result of this life-changing event. I hope my work will contribute to enhancements in AYA cancer care that will support you in navigating this difficult journey.1 Chapter 1: Introduction Adolescent and young adult (AYA) oncology is a specialty practice (situated between the traditional fields of pediatric and adult oncology) that focuses on cancer in those 15 to 39 years-old (1). Over the past two decades, there has been a growing interest in research dedicated to this age group, as illustrated by a recent scoping review that identified 161 articles focused on AYAs affected by cancer published over a five-year period (4). It is widely known that a cancer diagnosis and treatment can cause complex physical and psychosocial challenges, with issues unique to this age group (5–8). There is also an abundance of literature documenting positive psychosocial outcomes in the wake of an AYA cancer diagnosis, including the concept of posttraumatic growth – the sense that one is more confident, capable, and able to discover new meanings in life following a traumatic experience (9–13). Despite the potential for positive psychosocial outcomes, the AYA population continues to experience fewer treatment improvements and inferior health outcomes compared to their younger and older counterparts (14). Moreover, although knowledge of physical health issues affecting AYAs with cancer has advanced, the psychosocial impacts are poorly understood (15). Among AYAs affected by cancer, a wide range of psychosocial challenges have been identified, including emotional distress, altered cognition, reduced self-concept, existential concerns, sexual and reproductive health issues, interruptions to education and/or employment, and strained relationships, which can have negative implications on quality of life (16,17). The prevalence of psychosocial challenges has been estimated to impact over 60% of AYAs (18). Psychosocial challenges in AYAs affected by cancer may be due, in part, to the timing of a cancer diagnosis, which co-occurs with a critical period of physical and psychological development that is characterized by establishing one’s identity, gaining autonomy, graduating 2 from school, beginning a career, or starting a family (19,20). Notably, the psychosocial impact of a cancer diagnosis may last months to years after concluding treatment, and can adversely impact quality of life, social functioning, employment, educational attainment, and relationships (21,22). Unfortunately, AYAs struggling with psychosocial challenges may not have access to the support required to manage the lasting impact of a cancer diagnosis and treatment. Indeed, many AYAs report unmet psychosocial needs as a significant concern during and after cancer treatment (23,24). Healthcare providers (HCPs) may underestimate the severity of psychosocial challenges experienced by AYAs, resulting in these issues being inconsistently or inadequately addressed (25). Furthermore, many AYAs experience fragmented care in outpatient medical clinics, are lost to follow-up, and/or lack awareness of the need for long-term care (26–28). This disjointed, and in some cases, inadequate follow-up care can lead to risky behaviours and even poorer psychosocial and physical health outcomes for AYAs (29,30). HCPs spend time with AYAs during their cancer journey from diagnosis through illness trajectories and may be uniquely positioned to support patients’ psychosocial challenges (31). Many AYAs develop a trusting relationship with their HCPs during cancer treatment and express gratitude and respect towards them (30). However, HCPs have also shared a lack of AYA-specific knowledge and skills in delivering age-tailored cancer care and may not be clear as to their role in caring for AYAs with psychosocial challenges, which could hinder their capacity to support this population (26,28). Recently published reviews have summarized qualitative and quantitative studies reporting on the psychosocial outcomes experienced by this population and explored the effects of interventions to enhance psychosocial outcomes (16,32–37). For example, Barnett et al. (16) synthesized the psychosocial outcomes and unique needs of this cohort, and Sodergren et al. (36) 3 reported on their health-related quality of life issues. Both reviews indicated that AYAs’ experiences are nuanced, highlighting the co-existence of positive and negative psychosocial outcomes. Notwithstanding these reviews’ contributions, the studies included within these reviews were predominantly quantitative in nature (60% and 84%, respectively), limiting a comprehensive understanding of psychosocial challenges from the perspectives of AYAs themselves that a full qualitative synthesis would be able to offer. Indeed, it is possible that issues or contexts relevant to the AYAs’ experiences of psychosocial challenges may have been missed. Moreover, few recommendations for HCPs draw from summaries of qualitative studies, underscoring the need for relevant and evidence-based clinical implications that guide HCPs in addressing the psychosocial challenges in AYAs affected by cancer. Despite these gaps in the literature, no systematic review synthesizing qualitative studies has been conducted. A synthesis of qualitative work could shed light on nuanced findings in the literature and provide specific insights into how HCPs can play a pivotal role in providing tailored and effective care to AYAs, thus ensuring greater support for this growing cancer population. Enhanced knowledge in this area will also contribute to the drive for patient-informed care, a critical factor in improving care models and patient health outcomes. 1.1 Statement of Purpose This systematic review appraised and synthesized qualitative evidence regarding the psychosocial challenges in AYAs affected by cancer. The role of HCPs in caring for this population was also explored and discussed based on the findings from this review. 4 1.2 Review Questions This systematic review of qualitative research was guided by the following research questions: 1. What are the psychosocial challenges of AYAs affected by cancer? 2. What are the clinical implications for HCPs to best address the psychosocial challenges of AYAs affected by cancer? 5 Chapter 2: Methods We conducted a systematic review of qualitative research in accordance with the Joanna Briggs Institute (JBI) methodology for systematic reviews of qualitative evidence (38) and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines (39). 2.1 Search Strategy A comprehensive search strategy was developed in MEDLINE through consultation with a health sciences librarian that was subsequently translated to CINAHL and PsycINFO. Appendix A depicts the original search strategy developed in MEDLINE. The search strategy included terms covering the population of AYAs, in the concept of psychosocial challenges, and the context of a cancer diagnosis, treatment, or survivorship. Search results were limited to English-language studies published from 2006 to July 13, 2023, which corresponds to the earliest discussions of the AYA population in the literature following a seminal report on this topic in 2006 (40). 2.2 Eligibility Criteria We included peer-reviewed primary studies of any design using a qualitative approach. No restrictions were made regarding the qualitative methodology, data collection, or data analysis techniques. While mixed methods studies were considered for inclusion, ultimately, none met the inclusion criteria. To be included, studies had to report on psychosocial challenges in AYAs diagnosed with cancer between the ages of 15 and 39. Specifically, participants’ mean or median age at the time of the study, and at diagnosis, had to be between 15 and 39-years-old. In addition, adolescents or young adults had to be the explicit interest of the study. Participants could be diagnosed with any type of cancer. 6 Exclusion criteria: (1) editorials, conference proceedings, dissertations, theses, or grey literature; and (2) no psychosocial challenges discussed. 2.3 Study Selection Covidence systematic review software was used to manage studies during screening (41). Two authors independently screened the titles and abstracts against eligibility criteria before a full-text review to determine inclusion. Any disagreements regarding study inclusion were resolved through discussion between the student and supervisors. 2.4 Data Extraction Data were extracted from the included studies and entered in a data extraction table in Excel. Information retrieved from each study included the year of publication, journal, study location, methodology and theoretical framework, study purpose, sample size, age of the participants at the time of the study and diagnosis, data collection methods, data analysis techniques, key qualitative findings, and practice implications. 2.5 Assessment of Methodological Quality Eligible studies were assessed for methodological quality using the JBI critical appraisal checklist for qualitative research (42). The congruity of a study’s research methodology with its theoretical perspective, objective, and data collection and analysis techniques were assessed. Upon assessment of each included study according to the 10 quality indicators of the JBI critical appraisal checklist for qualitative research, 39 articles were deemed to be of high methodological quality (43–81), six were of moderate methodological quality (82–87), and two were of low methodological quality (88,89). All studies were ultimately included in the review. We made the decision to include the two studies of low methodological quality based on their exploration of the psychological impact of cancer on young African women, offering unique cultural and 7 gender-related insights to the synthesized understanding of psychosocial challenges in AYAs affected by cancer (88,89). A table detailing the appraisal of each study is included in Appendix B. 2.6 Data Synthesis Data was synthesized using the JBI meta-aggregative approach for qualitative evidence synthesis (38,39). This approach involves identifying findings from the primary data and developing preliminary codes, grouping similar codes into categories, and developing a synthesized finding based on a group of categories (38). The primary author used the Excel data extraction table to develop preliminary codes based on extracted data. With support from the supervisory committee, the primary author developed the initial codes into synthesized findings pertaining to the psychosocial challenges experienced by AYAs affected by cancer. The authors’ interpretations of data guided implications for practice and the role of HCPs in caring for AYAs. One goal of our meta-aggregative synthesis was to formulate generalizable recommendations to guide HCPs, which this approach is well-suited to do (38). 2.7 Rigour Several strategies to enhance the rigour of this systematic review of qualitative research were undertaken (90). The search strategy was developed with a health sciences librarian to ensure the utilization of appropriate search terms and Boolean operators. The primary author took detailed notes on initial impressions of the data during the iterative abstraction process and engaged with multiple individuals who have expertise in AYA oncology and qualitative research and review methodology. An audit trail was developed to document methodological decisions throughout the research process. Finally, peer review of the synthesized findings was conducted 8 to ensure the analysis was derived from, and attributed to the primary data abstracted from the studies. 2.8 Protocol Registration This protocol was registered on Open Science Forum in accordance with the JBI systematic review guidelines on October 4, 2023. 9 Chapter 3: Findings A systematic search of the electronic databases MEDLINE, CINAHL, and PsycINFO yielded a total of 7310 studies. Following the removal of 1104 duplicates, the titles and abstracts of the remaining 6206 studies were screened, and 5952 studies were excluded at this level. 254 studies were sought for retrieval, and their full texts were assessed to determine eligibility. 207 studies were excluded for various reasons and the remaining 47 articles were included in the review. Reasons for excluding full-text papers that did not meet the inclusion criteria are detailed in a PRISMA flow diagram that illustrates the record screening process, as shown in Figure 1. A variety of methodological designs were used, including studies described as qualitative without a specific approach (44,50,62,67,68,70,71,74,76,80–87,89), grounded theory (45–47,54,72,73,77), phenomenology (55,59,63,73,76), narrative inquiry (58,59), ethnography (56), interpretive (53), descriptive (52,66,69,79), interpretive descriptive (60), exploratory (43,49,88), cross-sectional (48), case study (63), and longitudinal (51,55,64). The studies were conducted in various countries, including the United States (46,47,50,61,62,66,68,69,78,83,89), Canada (52,55,58,59,63,73,77), Australia (51,53,57,74,79,85), Belgium (44,45), Sweden (43,64), New Zealand (49), Germany (48), Norway (60), Ghana (88), and the United Kingdom (65,67,71,72,75,82,84,87). Two were multi-site studies conducted in several countries (76,86), one utilized a global online community for young people with cancer (56), and four did not state their location (54,70,80,81). The sample size of participants ranged from 4 to 65, with one study using 16 online blogs as its data source (61). The age of the study participants was inconsistently reported. However, of the available data, the mean or median age of the study participants ranged from 15.9 to 37.4 years at diagnosis and 15.6 to 37 years at the time of the study. Across the included studies, the lowest reported age at diagnosis was 13 (43) and the highest reported age 10 was 45 (89). Four of the included studies were based on two data sets, with two studies sharing each data set (44–47); all were included as each study reported on unique psychosocial outcomes. The clinical implications for HCPs in addressing the psychosocial challenges experienced by AYAs were mentioned in 25 of the 47 articles (44,48–54,56–58,60–68,73–75,88,89). Characteristics of the included studies are provided in Table 1. Figure 1: PRISMA Flow Diagram 11 Table 1: Characteristics of the Included Studies Study Country Methodology Study aim Data collection Sample size Age of study participants Age at diagnosis Psychosocial challenges Mention of implications for HCPs Ander et al., 2018 Sweden exploratory to explore cancer-related psychological distress experienced by adolescent cancer survivors who have expressed a need for psychological support interviews 10 17-25 (mean 21) 13-17 (mean 15.9) loss, identity, seeking normality, relationships no Belpame et al., 2016 Belgium qualitative to describe the psychosocial experiences of AYAs with cancer to further the understanding of the meanings they attribute to their experiences semi-structured interviews 23 15-25 15 or older changed body, autonomy yes Belpame et al., 2018 Belgium grounded theory to discover the psychosocial experiences of AYAs experiencing cancer, its treatment, and follow-up, the meanings they attributed to these experiences, and to capture the processes that shaped their experiences semi-structured interviews 23 15-25 15 or older changed body, loss, uncertainty, autonomy, mood changes, identity, seeking normality, relationships no Brauer et al., 2017 USA grounded theory to explore the processes of resuming work and school among AYAs after hematopoietic cell transplantation semi-structured interviews 18 19.8–34.6 (mean 26) not stated cognition, loss, mood changes, identity, relationships, education and employment no Brauer et al., 2019 USA grounded theory to explore the impact of the cancer experience on sense of life potential and perception of the future from the perspective of AYAs after hematopoietic cell transplantation semi-structured interviews 18 19.8–34.6 (mean 26) not stated uncertainty, mood changes no Braun et al., 2023 Germany cross-sectional to collect detailed self-reported information about the work, education, and financial situation of AYA survivors after acute treatment and support that was helpful semi-structured interviews 11 24-44 (mean 31.5) 18-39 (mean 25.7) autonomy, mood changes, education and employment yes Cameron et al., 2021 New Zealand exploratory to explore interactions relevant to AYA survivors and cancer and investigate whether specific interactions are more or less helpful semi-structured interviews 10 16-25 (mean 21.8) not stated autonomy, identity, relationships no Carpentier et al., 2011 USA qualitative to explore AYA testicular cancer survivors' subjective understanding of the impact of cancer as an AYA with an emphasis on romantic and sexual relationships semi-structured interviews 21 18-34 (mean 27.1) not stated infertility, identity, relationships, sexuality yes Connell et al., 2006 Australia longitudinal to explore the issues and concerns of young women with breast cancer over time semi-structured interviews 35 not stated 29-40 (median 37) infertility, mood changes yes 12 Study Country Methodology Study aim Data collection Sample size Age of study participants Age at diagnosis Psychosocial challenges Mention of implications for HCPs Corbeil et al., 2009 Canada descriptive to describe the experience of uncertainty in YAs with cancer interviews 6 19-30 (mean 25) not stated uncertainty yes Coyne & Borbasi, 2007 Australia interpretive to explore the experience of breast cancer for women under the age of 50 and their psychosocial support needs with reference to their phase of life and family concerns in-depth interviews 6 29-43 (mean 37) not stated loss, mood changes yes Currin-McCulloch et al., 2021 not stated grounded theory to explore the unique physical and psychosocial-spiritual losses and grief responses of YAs diagnosed with advanced cancer and barriers to ability to maintain hope semi-structured interview and the Hope Timeline 13 23-38 (mean 30.5) 17-38 (mean 26.7) loss, uncertainty, autonomy, mood changes, identity, seeking normality, relationships yes David et al., 2012 Wales qualitative to evaluate the psychosocial support needs of teenage YA cancer patients undergoing radiotherapy in Wales focus group 4 20-24 (mean 22.3) not stated identity, seeking normality no Drake & Urquhart, 2019 Canada longitudinal to explore YA cancer survivors' perspectives on and experiences with return to work following treatment semi-structured interviews 5 25-40 (mean 32) 18-39 education and employment no Gibson et al., 2016 online community JTV Cancer Support virtual ethnography to determine how young people describe challenges of cancer and its treatment on social media participant observation 18 11-25 2 diagnosed at 11-12, 4 diagnosed at 13-18, 11 diagnosed at 19-25, 1 unknown uncertainty, mood changes, seeking normality yes Halliday et al., 2015 Australia phenomenology to investigate and explore the lived experiences of fertility, pregnancy, and motherhood for young women who had received treatment for hematological malignancies during their childbearing years and later wished to have a biological child in-depth open ended interviews 12 25-39 not stated infertility, uncertainty, mood changes yes Hammond & Teucher, 2017 Canada narrative inquiry to explore how YAs speak to their identities in relation to their narratives of having cancer and receiving care semi-structured interviews 21 18-45 not stated identity, relationships, sexuality yes Hammond et al., 2015 Canada narrative inquiry to investigate the prevalence of 3 tricksterly themes in YAs' stories of cancer: uncertainty, subversion, possibility semi-structured interviews 21 18-45 not stated isolation, uncertainty, relationships no Hauken et al., 2019 Norway interpretive descriptive to illuminate the coexistence of negative and positive experiences of YA cancer survivors after cancer treatment semi-structured interviews 20 24-35 (mean 31.1) not stated changed body, cognition, mood changes, relationships, education and employment yes 13 Study Country Methodology Study aim Data collection Sample size Age of study participants Age at diagnosis Psychosocial challenges Mention of implications for HCPs Iddrisu et al., 2020 Ghana exploratory to explore, understand, and document the experiences of young women with breast cancer semi-structured interviews 12 28-45 not stated changed body, mood changes yes Keim-Malpass et al., 2013 USA phenomenology to gain a unique perspective on the narratives shared online by young women with cancer, specifically related to descriptions of disruptions in their life caused by the cancer diagnosis and explore the facilitators and barriers that were present in accessing healthcare services illness blogs 16 blogs 20-39 23-39 (mean 31.7) changed body, infertility, mood changes, seeking normality yes Kent et al., 2012 USA qualitative to inform researchers and practitioners about patterns of shared experience in AYA survivors from time of diagnosis onward focus group 19 15-39 16-40 infertility, autonomy, mood changes, relationships yes Kuhlthau et al., 2015 USA qualitative to evaluate the ways that CNS tumor survivorship influences AYA’s HRQoL in order to identify and describe aspects of HRQoL for inclusion in the development of an HRQoL instrument for this population focus group 19 24-40 17-38 (mean 26.8) infertility, cognition, loss, uncertainty, mood changes, identity, relationships, education and employment no Larouche & Chin-Peuckert, 2006 Canada multiple case study to explore adolescents’ perceptions of their body image when faced with cancer and its treatments and the impact of this perceived body image on their everyday life semi-structured interviews 5 14-17 (mean 15.6) not stated changed body yes Lehmann et al., 2014 Sweden longitudinal to provide insight into survivor-reported negative and positive consequences of cancer during adolescence 10 years after diagnosis and compare these with consequences reported 3 and 4 years after diagnosis interviews 28 23-29 (mean 25.5) 13-19 changed body, infertility, loss, mood changes, identity, relationships yes Lewis et al., 2012 USA qualitative to evaluate the psychosocial concerns of a group of African American breast cancer survivors who had completed a peer counseling program Sisters Peer Counseling In Reproductive Issues after Treatment semi-structured interviews 33 not stated 25-45 (mean 37.4) mood changes, relationships, sexuality yes 14 Study Country Methodology Study aim Data collection Sample size Age of study participants Age at diagnosis Psychosocial challenges Mention of implications for HCPs Lidington et al., 2021 UK phenomenology to describe the experiences of YAs diagnosed with cancer in the UK within the last five years focus group, semi-structured interviews 65 25-39 (mean 33.6) mean age 31.7 changed body, uncertainty, mood changes, seeking normality, relationships, sexuality, education and employment yes Love et al., 2014 USA descriptive to explore the unique challenges men report in the context of YA cancer online forum, focus group, key informant interviews 253 posts from an online forum, 5 men 21-36 for focus group (mean 28), 18-39 for online posts, 25-39 for interviews (mean 31) not stated n/a yes Magrath et al., 2021 UK qualitative to meaningfully explore the experiences of AYAs return to education semi-structured interviews 8 18-27 (mean 21.8) 16-19 (mean 17.6) cognition, loss, seeking normality, relationships, education and employment yes Marshall et al., 2019 UK qualitative to explore whether the concept of liminality can provide a greater understanding of those patients experiencing adolescence and cancer concurrently interviews 17 not stated treated for cancer between the ages of 15 and 24 isolation, autonomy, identity, relationships no Miller, 2015 USA qualitative to delineate sources of uncertainty experienced by breast cancer survivors under the age of 40 interviews 25 not stated 26-39 (mean 34) infertility, uncertainty, mood changes, identity, relationships yes Mishra et al., 2018 USA descriptive to characterize YA and caregiver perspectives on the impact of cancer and its treatment on HRQoL semi-structured interviews 8 23-39 not stated loss, autonomy, mood changes, education and employment no Panjwani et al., 2019 not stated qualitative to identify perceptions of uncertainty tied to age-specific tasks that YAs with cancer experience and understand how their experiences of uncertainties are shaped by the off-time nature of illness and developmental stage of young adulthood semi-structured interviews 53 18-39 mean age 25.9 infertility, uncertainty, relationships, sexuality, education and employment no Reed-Berendt et al., 2019 UK qualitative to explore experiences and opinions of low mood or depression in young people with cancer, how their mood relates to developmental challenges, strategies used to cope, and how services can improve support semi-structured interviews 19 18-31 (mean 22.4) 11-26 (mean 18.1) changed body, loss, isolation, autonomy, mood changes, seeking normality, relationships no 15 Study Country Methodology Study aim Data collection Sample size Age of study participants Age at diagnosis Psychosocial challenges Mention of implications for HCPs Rees, 2017 UK grounded theory to explore the experiences and perceptions of young women living with a history of breast cancer in the UK and the impact of breast cancer on a young woman’s life course and identity semi-structured interviews 20 26-53 (mean 37) 22-44 (mean 33.8) loss, uncertainty, mood changes, seeking normality no Robinson et al., 2014 Canada grounded theory to gain an in-depth understanding of the relationship experiences of YA cancer survivors interviews 53 mean 32.8 18-39 (mean 29.8) relationships, sexuality yes Patterson et al., 2012 Australia qualitative to inform our understanding of the needs of emerging adults with a diagnosis of cancer from a developmental perspective that appreciates the key transitional tasks of emerging adulthood focus group and individual interviews 14 20-25 (mean 22) 12-22 (mean 16) autonomy, identity, mood changes, seeking normality, relationships yes Smith et al., 2018 UK phenomenology to provide a detailed understanding of the issues faced by young people with thyroid cancer and to examine how they ascribed meaning to their experiences semi-structured interviews 8 19-34 (mean 27.1) 17-32 (mean 24.5) changed body, infertility, loss, isolation, uncertainty, mood changes, relationships yes Sodergren et al., 2018 France, Israel, Norway, Poland, Netherlands, UK qualitative to capture the HRQoL issues described by AYAs with cancer semi-structured interviews 45 14-25 not stated changed body, infertility, isolation, autonomy, mood changes, identity, seeking normality, relationships, education and employment no Thompson et al., 2009 Australia qualitative to explore the experiences of unmet physical, psychological, and social needs amongst AYA cancer patients focus group 8 22-30 22-29 (mean 24.7) isolation, uncertainty, mood changes no Tindle et al., 2019 Australia, England, USA qualitative to understand how AYA survivors of cancer conceptualize meaning in life semi-structured interviews 45 18-40 (mean 28.7) 15-29 (mean 21.3) loss, uncertainty, mood changes no Vanstone et al., 2021 Canada grounded theory to understand women’s lived experiences of the perinatal period after having received treatment for cancer and the ways in which women coped, both physically and emotionally, during their pregnancies and into the postpartum period semi-structured interviews 10 27-41 (mean 35.2) not stated infertility, mood changes no Victorson et al., 2019 USA phenomenology to better understand the lived experiences of YA cancer survivors and the psychosocial impacts that cancer has had on their lives focus group 16 28-39 (mean 33.1) not stated isolation, mood changes, identity, seeking normality, relationships no 16 Study Country Methodology Study aim Data collection Sample size Age of study participants Age at diagnosis Psychosocial challenges Mention of implications for HCPs Wallis et al., 2021 Australia descriptive to understand the implications of having survived cancer for the young person’s choice of, and participation in, meaningful occupational roles, with a view to informing occupational therapy practice semi-structured interviews and photo elicitation 4 19-24 (mean 22.8) 16-20 (mean 18.5) isolation, identity, loss, seeking normality, relationships, education and employment no Walsh et al., 2019 not stated qualitative to identify opportunities to enhance supportive care services for YA cancer patients during this transitional phase in the care trajectory in the context of their ongoing developmental, psychosocial, and medical needs semi-structured interviews 13 19-27 17-25 changed body, isolation, identity, mood changes, seeking normality, relationships no Wicks & Mitchell, 2010 UK qualitative to meaningfully explore the experiences of AYAs return to education semi-structured interviews 8 18-27 (mean 21.8) 16-19 (mean 17.6) cognition, loss, identity, seeking normality, relationships, education and employment yes Williamson et al., 2010 not stated qualitative to explore the impact of appearance change on adolescents with cancer and their parents case study interviews, photo elicitation, online survey 22 13-18 not stated changed body, isolation, mood changes no Abbreviations: AYA = adolescent and young adult; CNS = central nervous system; HRQoL = health-related quality of life; UK = United Kingdom; USA = United States of America; YA = young adult 17 Through data analysis of the 47 articles, 13 distinct psychosocial challenges were generated and organized into 4 overarching themes: (1) physical, (2) psychological, (3) interpersonal, and (4) daily living challenges. In certain instances, the descriptions of these psychosocial challenges overlapped, highlighting their interconnected nature. The domains of psychosocial challenges experienced by AYAs affected by cancer are depicted in Figure 2. Figure 2: Domains of Psychosocial Challenges 3.1 Physical Challenges AYAs described experiencing alterations to their physical body due to the cancer diagnosis and treatment resulting in a range of psychosocial impacts. Specifically, AYAs indicated physical challenges spanning body image and infertility. The impacts on body image affected multiple domains, leading to absences from school and the avoidance of social 18 interactions, and were marked by feelings of embarrassment, distress, and lowered self-esteem. The prospect of potential infertility was described as devastating for AYAs, with some expressing frustration over cancer taking away their ability to decide if and when to have children. 3.1.1 Changed Body A changed body as a result of cancer and its treatment resulted in body image concerns, which were particularly salient for AYAs who were at an age where focusing on and formulating their appearance and what others thought of them was common (44,71). Although AYAs once perceived their bodies as strong, they now seemed “achy, broken, and uncooperative” post-treatment (61). Physical changes, including hair loss, scars, changes in weight, rashes, stretch marks, pallor, and the presence of a central venous catheter, caused distress for AYAs, who viewed their bodies as different, abnormal, or disfigured compared to their peers (45,63–65,75,76,81,88). Changes in body image also affected mood, self-confidence, self-esteem, and gender identities, with some AYAs no longer feeling conventionally feminine or masculine (44,71,73,75,76,81). AYAs described being worried that their appearance attracted unwanted attention from others, making them feel exposed, self-conscious, and vulnerable (63,65,76,81). As one AYA stated: “I find myself so ugly that I am scared to go out in a crowd because I think people will look at me” (63). These worries were described as a catalyst for missed school, and staying home due to embarrassment, to avoid negative social reactions (63,75,76,81). Body image also impacted romantic relationships and sexuality, with AYAs reporting decreased interest in sexual intimacy and concerns about appearing unattractive to romantic partners 19 (63,68,70,73,76). Some AYAs claimed that until their appearance returned to normal, they would not feel fully confident in themselves (81). 3.1.2 Infertility As the AYA period includes peak reproductive years, concerns related to infertility were frequently mentioned. The possibility of infertility was devastating for AYAs and caused feelings of stress, remorse, frustration, loss, and sadness (61,62,70,76,77). AYAs expressed frustration at cancer taking away choices in life, as they balanced their desire to have children with the importance of sufficiently treating their cancer (53,72). This spurred feelings of jealousy for some, as they compared themselves to other AYAs without cancer who were free of fertility concerns (61,72). Both men and women who had the option to undergo fertility preservation before beginning cancer treatment were faced with complex family planning decisions (68,70). Some AYAs were forced to commence family planning sooner than expected as they were suddenly constrained by time and their treatment regimen, and no longer had control over when to have children (72). Many who chose not to undergo fertility preservation expressed decisional regret (61). Others felt guilty or selfish for wanting to conceive, knowing that their future children could be affected by cancer in some way (77). As one AYA stated: “Well what if…the quality of my eggs has been compromised because of chemo? So, what if there’s potential for, genetic diseases? All of these terrible things were kind of my initial thoughts. So it was that happiness of like, ‘Oh my god it happened […], then that constant fear of something will go wrong” (77). 3.2 Psychological Challenges AYAs frequently experienced significant changes to their mental and emotional state as a result of their cancer diagnosis and treatment. AYAs ascribed these changes to multifaceted 20 psychological challenges, encompassing loss, isolation, uncertainty, autonomy, identity, mood changes, and seeking normality. These challenges had a profound effect on various aspects of life, and were described by AYAs as missing key developmental milestones, social isolation, uncertain treatment prognoses, lost independence, an altered sense of self, feelings of low mood and anxiety, and a perceived inability to move forward from their cancer experience. 3.2.1 Loss Loss was frequently mentioned by AYAs in relation to their cancer experience. Loss of control was a particularly salient issue for AYAs, and many felt as though cancer robbed them of their ability to make life decisions, which they attributed to the unpredictability of their treatment schedules and the impact of treatment on their physical appearance and overall wellbeing (43,45,72,75,82). Missing out on significant life experiences, such as social events, education, graduation, employment, and independent living, due to the mental, emotional, and financial limitations imposed by cancer caused feelings of loss, frustration, disappointment, regret, and sadness for AYAs (64,65,69,71,76,79). The inability to participate in these developmental milestones was particularly challenging for AYAs, who were at an age when new shared experiences with peers were important priorities (54,71,76). One AYA articulated: “All my friends had gone to Uni, and obviously I had to stay and have treatment and stuff . . . it was seeing them, doing all the things that I wanted to do that I just couldn’t” (71). Finally, a sense of a lost future was described by some AYAs, as the life they had envisioned seemed unattainable, and they no longer held the same aspirations, beliefs, or motivation as pre-diagnosis (54,67,86). This overwhelming sense of loss made AYAs feel as though they were late or unlikely to achieve the expected milestones of their age group and resulted in disappointment, distress, jealousy, anger, depression, and failure (46,76). It also left some participants wanting to exert control over 21 some aspects of their treatment, including noncompliance or indifference toward decision-making (82). 3.2.2 Isolation AYAs frequently expressed feelings of isolation in the context of the healthcare system and in relation to others within their social network (69). Although AYAs were often surrounded by people, many found it challenging to socialize with their peers or explain their diagnosis to others, which led to feelings of isolation (75,76,79,80,89). Despite the presence of a supportive network, AYAs often grappled with feelings of isolation, and as one AYA explained: “As good as your support is, I just still feel alone. It’s my own world, [and] it’s a different world” (78). Unique experiences, brought on by their cancer diagnosis and treatment, set them apart from others, which led to persistent feelings of loneliness (78). Some AYAs reported feeling lonely after losing contact with friends who had abandoned or disappointed them (78,81). Although time alone was a necessary part of treatment, symptom management, and recovery, it often induced feelings of isolation, emptiness, and sadness (60,61,65). AYAs also questioned their faith, life’s purpose, and the meaning behind their devastating diagnosis (54,64,74). These concerns were often distressing, frightening, and lonely for AYAs, and they became acutely aware of their emotional vulnerability (43,45,72,74). Throughout their treatment, AYAs struggled to find a place to belong in the healthcare system, as they were younger than other cancer patients that they encountered and sometimes felt socially isolated, lost, and misunderstood (58,62,68,75). As they transitioned out of the structured environment of the hospital and no longer received support from their HCPs, friends, and family, some AYAs felt even more alone and unprepared to manage their ongoing health 22 concerns (71,85). These feelings of isolation made AYAs feel invisible to others and caused emotional distress, low mood, emptiness, and sadness (54,58,60,78,81). 3.2.3 Uncertainty Uncertainty was a challenge for AYAs from diagnosis into the post-treatment phase. AYAs faced uncertainty concerning treatment side effects, whether to undergo procedures, the duration and effectiveness of their treatment, and fluctuating symptoms and prognoses (52,59,65,68,72). Many felt burdened and troubled by the unpredictability of their mortality and were forced to contemplate the possibility of death at a time when they had plans for the future, including personal and professional goals (43,54,59,64,65,72). This made them reluctant to look ahead to the future, as they worried their life could end unexpectedly (64). The possibility of experiencing a relapse also led some AYAs to believe that every new symptom indicated disease progression (45,52,54,57,60,62,64,65,68,72,75,76,78,85). AYAs often felt their life was on hold and grappled with uncertainty about their future plans regarding careers, education, and marriage, which created a sense of disconnection and isolation from their peers (47,52,57,59,65,68,70,75,76,83,85). Many AYAs felt that life goals they had previously taken for granted, such as finding a partner and starting a family, were no longer guaranteed, and they braced themselves for the unknown, which caused distress, anxiety, fear, and panic attacks (45,54,59,68,70). Some also felt as though they were in an unknown space between healthy and ill (72), with one AYA describing it “like being in limbo all the time” (57). Others voiced feeling uncertain about who or what they had become as a result of their diagnosis and treatment (86). As one AYA described: “Post-treatment, psychologically 23 everything just came crashing down, I was left feeling like I didn’t have purpose, a place or role, I was lost” (79). 3.2.4 Autonomy Upon starting cancer treatment, many AYAs expressed concerns about changes in their level of autonomy. Feeling autonomous was important for AYAs in their development, especially those at a pivotal period of gaining independence from family (49,54). A cancer diagnosis often forced AYAs to become dependent on others again or move back in with their parents as they required physical, emotional, financial, and practical support (44,45,49,62,69,71,76,84). One AYA eloquently stated: “You feel so powerless. You would rather cry because of this powerlessness than from the cancer itself. You are less capable to do things yourself. You have to ask for help all the time, and you depend on others for a lot of things [...] You can’t avoid it, you are a child again” (44). Those who had to depend on family and friends for financial support felt frustrated at this perceived loss of autonomy and the inability to live independently, which was an important life experience that their healthy peers were able to achieve (44,45,49,60,69). This loss of independence was demeaning for AYAs, who felt they had regressed in relation to their peers (44,49,71,74,76). Some AYAs experienced conflicting emotions, as they desired parental support but also resisted losing the freedom they had previously achieved or anticipated (84). Others found that their parents became more protective of them following their diagnosis, which was challenging to navigate when trying to regain independence following treatment (45). 3.2.5 Identity Although AYAs often wished to remain the same person following a cancer diagnosis, many struggled with their sense of identity and did not want to be stigmatized as someone with 24 cancer or allow the disease to define and dominate their identity (45,49,58,64,78,80,87). Cancer became a defining characteristic for many and negatively impacted self-perceptions (49,76,78,83,84). As a result of their cancer journey, AYAs often felt insecure, disoriented, and questioned their goals and values (45,50,52,54,74,76,80). Despite struggling to maintain their social identities, many felt confused about who they were and disconnected from their unfamiliar bodies, thoughts, and feelings (43,54,78). Separation from pre-cancer roles within families, relationships, careers, and social circles also added to this sense of lost identity (54). Moreover, some female AYAs who were faced with physical appearance changes and potential infertility felt their strong, feminine identity was threatened, which caused feelings of grief and loss (54,68). Throughout treatment, AYAs both mourned their former selves and struggled to find a new purpose in life that incorporated cancer into their identity and life stories (45,58,68,84). Some AYAs identified with being a ‘cancer survivor,’ but this label did not resonate with everyone or accurately fit their sense of identity (78). As one AYA explained: “It was hard to be the person I was before. And I didn’t know what person I was left to be. I was lost” (46). 3.2.6 Mood Changes For AYAs, cancer treatment was often associated with various mood changes, including experiences of low mood, decreased self-esteem, and a lack of confidence (64,71,83). A cancer diagnosis was described by some as the most stressful time of their lives, shocking many AYAs who had previously perceived themselves to be invincible (53,54,62). Their diagnosis also caused feelings of confusion as AYAs struggled to comprehend what had happened, sometimes blaming themselves for their cancer (75,86). Depressive symptoms were commonly experienced by AYAs, which were sometimes hard to articulate and make sense of (64,71). Some AYAs reported low mood in response to trivial events or restrictions to previously enjoyed activities 25 and interrupted life plans (71,76,78). Complicated feelings of guilt were also voiced by AYAs, and related to survivor guilt (knowing other AYAs with cancer had not survived their diagnosis), causing their families distress and inconvenience, and failing to get better or accomplish previously set goals (74,86). Despite completing treatment, the relief of survival was often clouded by sadness and regret due to the significant impact that treatment had had on them (57). Cancer remained at the back of their minds, and the mental and emotional exhaustion from their treatment left AYAs feeling depleted (61). Some AYAs reported intrusive negative thoughts and feelings, psychological distress, flashbacks from their cancer experience, nightmares, and insomnia that were indicative of medical trauma (58,59,72,75,84). Others felt emotionally heightened and triggered by procedures or places that reminded them of their treatment (77). As one AYA described: “I can’t be in any sort of sterile medical environment without breaking out in a cold sweat” (61). Anxiety was another prominent mood change reported by AYAs that affected many aspects of their life. Anxiety surrounded their surveillance scans and follow-up visits, with AYAs using the term ‘scanxiety’ to describe their feelings (61,62). For some who were able to overcome the anxiety surrounding potential relapse, their worries shifted to the possibility of long-term treatment-related health risks or secondary malignancies (47,64,74,83,85). This heightened focus on symptoms and possible late effects of treatment resulted in diminished carefree attitudes, and highlighted the fragility of their life (47,57,60,85). As one AYA described: “Every day of my life, everything that I do, I’m constantly worrying and thinking. [...] It sucks to have to live your life constantly afraid of what’s going to come” (47). Leaving the acute healthcare system and transitioning to reduced medical visits and monitoring worsened 26 AYAs’ sense of anxiety, leading some to have intrusive thoughts and feelings of dread, as though something additionally unfortunate would occur (60,65,78,85). Moreover, AYAs also voiced anxiety surrounding their professional futures and whether they would be able to provide for themselves, their exposure and susceptibility to germs in busy environments, and the possibility of being stigmatized for their illness (46,48,60). 3.2.7 Seeking Normality Seeking normality was a recurring theme in relation to AYAs’ life outside of cancer treatment. For many AYAs, sustaining a sense of normalcy following their diagnosis was important and a sign of needing independence (56,87). Upon completion of their treatment, AYAs expected to return to their previous lives and sense of purpose, but transitioning from treatment back to their previous life proved to be more challenging than they had anticipated (43,54,74). The unexpected physical and psychosocial toll of their treatment interfered with future plans and made them feel different from their pre-cancer selves and peers (43,61,67,76). This was hard for AYAs to accept and often led to guilt, stress, and frustration at the inability to return to normal or even remember what ‘normal’ was, as so much had changed while they were undergoing treatment (45,56,67,71,79). Many were forced to adapt to a ‘new normal,’ which involved continued medical appointments, infection risk concerns, cancer recurrence worries, and late effects well into the post-treatment phase (67). Although it was often stressful and confusing for AYAs as they did not know how to proceed with their life after cancer, it was necessary for them to ‘get on with it’ and ensure that cancer did not remain the focus of their everyday life (45,59,65). However, this also proved difficult, and as one AYA described: “Cancer hovers, it’s always there no matter what I am doing. It affects my thinking, my mood, my ability to do things” (79). Even when AYAs were no longer receiving active cancer 27 treatment, they did not always feel adequately recovered, which made seeking normality and moving on to the next phase of their lives challenging (72). 3.3 Interpersonal Challenges Cancer and subsequent treatment often impacted AYAs’ capacity to engage and interact with others. As a result, AYAs commonly encountered difficulties with existing and potential friendships and relationships. The weight of a cancer diagnosis and treatment complicated interactions with friends, placed significant stress and burden on partners, and posed a barrier to initiating new romantic connections. Sexuality was also impacted, with AYAs describing changes in sexual desire and function. 3.3.1 Relationships Relationships with others, including peers and romantic partners, were often lost or strained following a cancer diagnosis (54,62). AYAs frequently voiced concerns surrounding the difficulty of maintaining or developing friendships and feeling distant from peers (43,60,62,70,71,76,78,79,83,84). Feeling left behind and excluded from social groups was particularly troubling for adolescents due to their developmental stage and desire to fit in with their peers (49,54,59). AYAs often faced dilemmas surrounding whether and how they should disclose their cancer diagnosis to their peers, making interactions particularly challenging (64,67,75,78,80). The awkward and emotional reactions from peers in response to their diagnosis were disappointing and made AYAs feel worse about how different they were (67,71). Many AYAs felt misunderstood by their peers who could not relate to what they were going through (46,50,59,60,65,70,76,78). As one AYA voiced: “People just ignored the whole thing and just didn’t talk to me very much” (83). Furthermore, others often assumed that AYAs were ‘back to 28 normal’ following treatment and failed to offer support, which frustrated AYAs and made it hard for them to voice their feelings (59,62,71). Initiating new romantic relationships was another challenge, as many single AYAs were not ready to begin dating, had limited opportunities to date, or struggled to believe they could find someone to accept them (45,62,76). Some feared that their changed persona as a result of their diagnosis and treatment might affect how future partners would treat them amid stressing new relationships (45,62). AYAs also found it challenging to disclose their diagnosis to a new romantic partner, as negative reactions from others often made them feel uncomfortable, and they thought it was unfair to burden a new partner with an unpredictable future (65,70,83,89). Other AYAs worried that disclosing their infertility to future partners would make them less desirable and be a relationship ‘dealbreaker’ (50,64,70,75,76). AYAs who were already in romantic relationships reported concerns about the negative impact of their diagnosis and treatment on their partners’ emotions and ability to cope (73,89). AYAs often struggled with various psychosocial issues, including depression, self-pity, and altered sexuality, which put an immense strain on relationships and often led to conflict (73). Many AYAs felt obliged to conceal their low mood or downplay their struggles to avoid burdening their loved ones who were already going through immense stress, which caused some AYAs to withdraw from others (60,65,71,74,76,79). Some AYAs also feared they would be abandoned by their partner, as they always felt sick, lacked time for intimacy, and experienced difficulties expressing their emotions (74,76). 3.3.2 Sexuality AYAs reported alterations to sexuality and sexual function, including a decreased interest in sex and difficulty experiencing pleasure (73,89). Changes in both sexuality and sexual 29 function led some AYAs to feel less desirable, attractive, and capable to their partners, which had the potential to strain sexual relationships (65,70,89). Concerns related to sexuality were sometimes dependent on the type of cancer the AYA was diagnosed with. For example, AYAs who underwent surgery to remove a testicle felt vulnerable and incomplete afterwards, suddenly insecure in their masculinity (50). Other AYAs who had to undergo a mastectomy due to breast cancer described feeling damaged, robbed of their womanhood, and feared their partner would not find them attractive following surgery (58,89). 3.4 Daily Living Challenges A cancer diagnosis and treatment frequently led to significant disruptions in the daily routines and life commitments of AYAs, resulting in psychosocial challenges. Changes in cognitive function led to impaired mental processes that were integral to their everyday activities, including those related to education and employment. Consequently, their ability to function effectively in academic or professional settings was also impacted, which posed barriers to AYAs resuming education and employment following cancer treatment. 3.4.1 Cognition AYAs occasionally reported changes to cognition due to their cancer treatment. Cognitive alterations were frightening for AYAs and often manifested as changes to concentration, memory, processing ability, and attention (46,60,67,83). As one AYA stated: “I used to forget a heck of a lot, all the time and just simple things like even half an hour before I was told something and I’d just forget it and I wouldn’t know why, I’d just completely blank” (67). Some of these cognitive alterations became more apparent as AYAs returned to school or work, and their mental workload increased (46,67). Their ability to study, learn, read, write, speak, and complete visual-spatial tasks was impacted by their ‘chemobrain’ or mental 30 ‘fuzziness’ (67,83). One AYA articulated: “It was kind of fuzzy like I would read a question and it would be a bit like tumbleweed, I could not focus in on what it was actually saying and like trying to think of an answer and then it would take a while” (67). 3.4.2 Education and Employment Following cancer treatment, AYAs often wanted to make up for lost time and expressed an urgency to resume school or work despite lingering health issues (46,65). AYAs who had been students prior to their diagnosis were worried about falling too far behind and being unable to complete their studies (46,60,69). For other AYAs, resuming work was financially necessary and considered an essential component of returning to normal, with some viewing their careers as a vital part of their identity and self-worth (60,65). However, those who rushed to resume school or work often held unrealistic expectations of themselves and regretted their haste in conceding they felt unprepared and overexerted (46). AYAs were also concerned about whether they would have a job to return to (having been in new jobs before their diagnosis) or whether their absence from work would affect their eligibility for career advancement (55,70). Others worried that their future employment prospects had narrowed due to the physical or psychosocial impacts of their cancer treatment on their ability to work, including cognitive alterations, decreased energy levels and physical ability, and a cancer relapse (48,55,60,65,75,76). Another issue faced by AYAs was whether to disclose their cancer history to future employers or colleagues due to fears of discrimination, being perceived as less capable, and feeling pressured to prove themselves (48,67,70,79,83). This concern was particularly salient for AYAs without job security, workplace connections, or professional experiences (70). 31 3.5 Healthcare Provider Implications Many of the studies included in this review highlighted important clinical implications for HCPs to best address the psychosocial challenges in AYAs affected by cancer. Key activities pertaining to the role of HCPs have been organized into distinct themes, outlining concrete actions HCPs can undertake to support AYAs within comprehensive cancer care. These themes include: (1) providing information; (2) shared decision-making; (3) connecting to resources; and (4) assessing and affirming. 3.5.1 Providing Information Providing cancer-related information to AYAs was frequently mentioned and pertained to various aspects of the cancer illness trajectory. The need to provide personalized, age-tailored, clear, and accurate information about AYAs’ cancer diagnosis, treatment options, potential side effects, life after treatment, risk of relapse, and how to maintain or improve quality of life were described as critical and necessary to facilitate comprehension of health status and psychologically prepare AYAs for their cancer journey (60,74,75). It was also recommended by authors of included studies that HCPs discuss the long-term effects of treatment early on and assist AYAs with planning life-adjustments post-treatment, which may stray from their pre-cancer goals (51,53,64,67). This enhanced communication from HCPs can help AYAs manage feelings of uncertainty and distress, improve their coping ability, gain a sense of reassurance and control, and alleviate fear and anxiety about unfamiliar symptoms or a cancer recurrence (52,54,56,68,88). Furthermore, the authors of two studies highlighted the importance of HCPs providing strategies to AYAs on how to communicate and prepare for discussions about their cancer diagnosis with others (49,63). 32 Authors of included studies recommended that AYAs be educated by their HCP on the physical impacts of cancer and its treatment on body image, sexuality, and infertility. HCPs can provide specific information to AYAs about potential or expected changes to their physical bodies, including alterations to breasts or reproductive organs, and discuss how these changes might affect intimate relationships (73). AYAs facing difficult decisions about fertility preservation have expressed frustration over insufficient information provided to them about fertility planning, impacting their ability to make informed choices (51). This highlights a potential practice gap and the importance of HCPs initiating comprehensive discussions with AYAs about fertility preservation options and reproduction after cancer (51,57,61). 3.5.2 Shared Decision-Making AYAs have expressed a desire to direct their own care and exert some control over decision-making (44). Therefore, involving AYAs in healthcare decision-making was described as key to ensure AYAs felt valued, respected, and empowered, ultimately benefiting their development and wellbeing (44,49,58,74). Authors of two included studies indicated that HCPs may be able to promote a patient-centred care model by communicating important cancer-related information to AYAs and allowing them to exercise autonomy by influencing aspects of their treatment (44,74). AYAs’ support networks play a prominent role, therefore assessing their coping and including them in care provision and decision-making (as possible) may enhance AYA buy-in and outcomes (53). HCPs should educate families, partners, and friends on how to communicate with and support AYAs, thus optimizing support that best meets AYAs’ needs (49,60,63,74). 33 3.5.3 Connecting to Resources HCPs can play an instrumental role connecting AYAs to relevant resources to manage various challenges that arise throughout their cancer trajectory, including psychosocial resources that address the isolating impacts of cancer (54). Many AYAs struggle to balance the demands of treatment with competing responsibilities, such as maintaining or resuming educational and professional pursuits, and HCPs may be ideally situated to alleviate some of this burden (62). This presents an opportunity for HCPs to direct AYAs to appropriate resources that may assist with navigating educational and career commitments, and minimizing disruptions to an AYA’s work, education, and lifestyle as much as possible (62,67,74). For those seeking assistance with resuming employment following treatment, HCPs can identify and facilitate access to targeted support services that can provide career and financial advice from experienced professionals (48). These services can help AYAs effectively communicate their cancer experience to their employers and manage necessary breaks or changes in their career (48). Appropriate referrals to fertility specialists and counsellors can also address the questions and concerns AYAs have about family planning early on following a cancer diagnosis (57). To address feelings of isolation, authors of included studies suggested that HCPs connect AYAs to in-person and online services that offer opportunities for peer connection, allowing them to express their thoughts and feelings, and learn about other AYAs with cancer (54,66,75). These connections can be invaluable for fostering mutual support, facilitating therapeutic conversations, reducing the impact of their cancer diagnosis, and improving coping and adjustment for this age group (75). 34 3.5.4 Assessing and Affirming Authors of included studies suggest HCPs communicate with AYAs in a way that acknowledges feelings of isolation often associated with a cancer diagnosis and inquire about how AYAs can be better supported and have their specific needs met (68). Recognizing the potential impact of uncertainty and loss on AYAs and understanding how these challenges can interrupt one’s sense of identity and ability to find meaning in life is critical for HCPs and could guide their interactions with patients (52,54). Furthermore, HCPs may wish to assess and affirm identity changes and their potential impact on other aspects of an AYA’s life, while also facilitating opportunities for AYAs to explore their shifting identity, values, and beliefs (74). It may also be beneficial for HCPs to evaluate how changes in body image may impact AYAs’ wellbeing and support them in utilizing effective coping strategies (63). This may include helping AYAs identify scenarios where they would feel comfortable in sharing their physical appearance changes with others without feeling judged, such as in a social setting with close friends (63). To tailor care to AYAs’ distinct circumstances, it is important for HCPs to recognize AYAs as individuals with unique needs, experiences, and preferences, and show a genuine interest in understanding their stories (44,52). AYAs appreciated when HCPs acknowledged their identities and personalized their approach to care (44). HCPs can also adopt a strengths-based approach and focus on the positive attributes of AYAs, such as their optimism, strong sense of identity, and supportive relationships, to reinforce positive feelings and attitudes among AYAs (58,60,64,74). 35 Chapter 4: Discussion & Limitations To our knowledge, this is the first systematic review that identified, appraised, and synthesized qualitative evidence on the psychosocial challenges in AYAs affected by cancer, and outlined clinical implications for HCPs to effectively address these issues. Navigating a cancer diagnosis and its treatment can cause complex psychosocial challenges, with issues unique to the AYA demographic (5–8). This review sheds light on the diverse psychosocial challenges experienced by AYAs that affect their physical and psychological health, interpersonal relationships, and daily activities. Prior systematic reviews have focused on synthesizing predominantly quantitative data related to psychosocial outcomes and interventions (16), longitudinal psychological, functional, and social outcomes (33), psychiatric disorders (34), and health-related quality of life issues (36) in AYAs affected by cancer. Our findings add to the existing evidence base on AYA oncology by offering a synthesis of the experiences of AYAs from their own perspective. Opting to focus exclusively on qualitative studies allowed us to highlight AYAs’ voices and experiences, capturing crucial insights into the psychosocial challenges of AYAs affected by cancer that cannot be measured through quantitative methods alone. There has been acknowledgement of the underrepresentation of AYAs in cancer research (16) and a limited understanding of the psychosocial impacts of a cancer diagnosis within this age group (15). However, the results from our review suggest psychosocial challenges in AYAs are, in fact, becoming increasingly documented. By analyzing and meta-aggregating data from 47 articles, we generated 13 distinct psychosocial challenges in AYAs affected by cancer. While many of these psychosocial challenges are common across different age groups affected by cancer, our findings highlight the unique life course timing of a cancer diagnosis and its co-36 occurrence with a critical period of physical and psychological development for AYAs. For instance, challenges related to a changed body, isolation, autonomy, uncertainty, and education and employment were particularly salient for this age group due to their unique life stage and was underscored across many studies. The AYA period is a time of heightened attention to appearance (71), yet a cancer diagnosis and treatment can alter one’s physical body, subsequently affecting body image and attractiveness. Although AYAs desire to fit in with their peers, many experienced feelings of isolation due to the uniqueness of their cancer experience. While many AYAs hope to develop autonomy from their parents and be in control of their life, a cancer diagnosis often caused feelings of dependence on others. Finally, as AYAs were faced with uncertainty, planning for their future was challenging, especially surrounding educational and career commitments. These findings demonstrate how the co-occurrence of a cancer diagnosis during a stage of important growth and development can shape and influence the psychosocial challenges experienced by AYAs. An objective of our meta-aggregative synthesis was to develop generalizable recommendations that HCPs can use to enhance their care of AYAs affected by cancer. Our analysis included 25 articles that explicitly discussed clinical implications for HCPs in addressing the psychosocial challenges experienced by AYAs. The findings of this review provide valuable insights into the multifaceted role of HCPs and key activities they can engage in to support AYAs in their management of physical, psychological, interpersonal, and daily living challenges. Several key activities emerged as important for HCPs to engage in to adequately address the psychosocial challenges of this age group: (1) providing adequate and appropriate cancer-related information, (2) involving AYAs in shared decision-making, (3) connecting AYAs to relevant resources based on identified need, and (4) assessing and affirming 37 their feelings and experiences. As many AYAs report unmet psychosocial needs as a significant concern during and after cancer treatment, it is crucial that HCPs possess a nuanced understanding of the psychosocial challenges experienced by AYAs in order to improve age-tailored practical, emotional, and social support (23,24,65). Moreover, early HCP intervention that is tailored to AYAs’ unique concerns and phase of their cancer journey is key to enhancing positive long-term health outcomes and can have a marked influence on AYAs’ wellbeing for many years following treatment (50). 4.1 Limitations There are several limitations to this systematic review. Including only studies published in English may have missed important cultural findings and contexts. The decision to include all 47 studies in the review, while comprehensive, may have influenced the conclusions drawn as some studies lacked in methodological rigour and quality. Of particular note was a lack of clarity surrounding the methodological approaches and data analysis techniques used in many of the studies. For instance, some studies claimed to employ a qualitative approach with phenomenological or grounded theory data analysis techniques, making it unclear whether a true phenomenology or grounded theory methodology was utilized. This ambiguity raises questions about the consistency and robustness of data collection and analysis, and whether certain findings were prioritized over others. Moreover, the JBI critical appraisal checklist for qualitative research does not critique a study's sampling methods, and any ambiguity in a study's description of its sample is not considered during the appraisal of its quality. Therefore, studies may be judged to be of satisfactory methodological quality and included despite lacking an explicit description of their sample, which may include individuals that do not meet the AYA definition we have adopted for this review. Including studies such as these may have implications for the 38 relevancy of synthesized findings and HCP recommendations for the AYA population. Given the varying methodological quality among the studies included in this review, the findings should be interpreted with consideration of these potential methodological implications. Future research endeavours would benefit from the adoption of clearly defined research methodologies that adhere to established guidelines for conducting qualitative studies. There is contention and debate in the literature regarding the definition of AYAs. While we opted for the most inclusive definition (i.e. 15-39 years of age), it is possible that adopting other definitions may have resulted in different findings. As previously mentioned, the reporting of participants’ ages in the studies reviewed was inconsistent, making it challenging to determine what portion of the sample fell within our defined age range for an AYA. Additionally, the criteria used to define an AYA varied across studies and often did not align with the definition adopted for this review. These observations underscore the need for future research to clearly and consistently articulate study participant characteristics, particularly with regard to defining the AYA population. This has important implications for informing psychosocial care recommendations tailored to this age group. 39 Chapter 5: Implications & Conclusion The findings from this systematic review have applied practice implications for HCPs, particularly in enhancing care for AYAs affected by cancer. This review explored the broad spectrum of psychosocial challenges faced by AYAs to facilitate a deeper comprehension of their concerns and unique needs within the context of their distinct developmental phase and life experiences. An enhanced understanding of the multifaceted challenges experienced by AYAs – including physical, psychological, interpersonal, and daily living challenges – can guide HCPs to tailor their support and effectively address AYA-specific issues within the scope of comprehensive cancer care, thereby improving the quality of care provided. Despite the extensive documentation of psychosocial challenges in AYAs affected by cancer, as evidenced by the 47 articles included in this review, there remains a gap in a coordinated care approach for this age group and a dearth of AYA-specific resources or guidelines to dictate care practices. The development of specialized guidelines, similar to the Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers created by the Children’s Oncology Group (COG) (22), could benefit HCPs providing care to this age group. The COG’s guidelines (22), which are intended for individuals living beyond a pediatric cancer, underscore the importance of annual psychosocial assessments to screen for late psychosocial effects, such as social withdrawal, educational problems, relationship problems, under-employment/unemployment, and dependent living. Drawing from the insights of this review and incorporating relevant recommendations from the COG, the creation of AYA-specific guidelines that outline the recommended frequency and composition of psychosocial assessments could greatly enhance psychosocial cancer care for this age group, thus ensuring their unique needs are adequately addressed by HCPs. 40 5.1 Conclusion The findings of this systematic review contribute valuable insights to healthcare practice and shed light on the diverse psychosocial challenges experienced by AYAs that affect their physical and psychological health, interpersonal relationships, and daily activities. Several key activities emerged as critical for HCPs to engage to adequately address the psychosocial challenges of this age group. Building on these insights, healthcare practice may greatly benefit from the development of guidelines for AYA psychosocial care, drawing on and expanding upon the recommendations from the Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers established by the COG. Standardized guidelines can promote a coordinated HCP approach to psychosocial cancer care across different healthcare settings. AYAs are a unique population who face complex psychosocial challenges associated with a cancer diagnosis and treatment. Through highlighting AYAs’ voices and experiences, this systematic review of qualitative research presented an opportunity to develop an integrated and nuanced understanding of the psychosocial challenges in AYAs affected by cancer, which can improve care models and patient health outcomes. 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Am J Pharm Educ. 2020 Jan;84(1):7120. 49 Appendices Appendix A: Search Strategy in MEDLINE Concept Keywords Medical Headings adolescents and young adults adolescen* OR teen* OR youth* OR young adult* OR juvenile Adolescent Health OR Adolescent Health Services OR Adolescent OR Young Adult OR Adolescent Psychiatry OR Adolescent Medicine OR Psychology, Adolescent or Adult cancer patients and survivors (neoplasm* OR oncolog* OR cancer*) adj3 (survivor* OR post-treatment OR living beyond OR patient*) Cancer Survivors OR Neoplasms psychosocial challenges (psycholog* OR psychosocial) adj3 (health* OR illness* OR effect* OR outcome* OR function* OR distress* OR well-being OR challeng*) Stress, Psychological OR Psychosocial Support Systems OR Psychosocial Functioning qualitative studies interview* OR narrative* OR questionnaire* OR self-report* OR survey* OR observational method* OR focus group* OR qualitative stud* Interview, Psychological OR Interview OR qualitative research OR Focus Groups OR personal narrative OR health surveys OR patient health questionnaire OR self report 50 Appendix B: Study Appraisal using the JBI Qualitative Critical Appraisal Criteria Study Congruity between the stated philosophical perspective and the research methodology Congruity between the research methodology and the research question or objectives Congruity between the research methodology and the methods used to collect data Congruity between the research methodology and the representation and analysis of data There is congruence between the research methodology and the interpretation of results Locating the researcher culturally or theoretically Influence of the researcher on the research, and vice-versa, is addressed Representation of participants and their voices Ethical approval by an appropriate body Relationship of conclusions to analysis, or interpretation of the data Overall appraisal: include, exclude, seek further information Ander et al., 2018 U Y Y Y Y Y Y Y Y Y Include Belpame et al., 2016 U Y Y Y Y N Y Y Y Y Include Belpame et al., 2018 U Y Y Y Y N Y Y Y Y Include Brauer et al., 2017 Y Y Y Y Y N Y Y Y Y Include Brauer et al., 2019 Y Y Y Y Y N Y Y Y Y Include Braun et al., 2023 U Y Y Y Y N N Y Y Y Include Cameron et al., 2021 U Y Y Y Y Y Y Y Y Y Include Carpentier et al., 2011 U Y Y Y Y N N Y Y Y Include Connell et al., 2006 Y Y Y Y Y N Y Y Y Y Include Corbeil et al., 2009 U Y Y N Y N Y Y Y Y Include Coyne & Borbasi, 2007 Y Y Y Y Y N N Y Y Y Include Currin-McCulloch et al., 2021 U Y Y Y Y U Y Y Y Y Include David et al., 2012 U Y Y Y Y N N U U U Seek further information Drake & Urquhart, 2019 U Y Y Y Y N N Y Y Y Include Gibson et al., 2016 U Y Y Y Y N Y Y Y Y Include Halliday et al., 2015 U Y Y Y Y N N Y Y Y Include 51 Study Congruity between the stated philosophical perspective and the research methodology Congruity between the research methodology and the research question or objectives Congruity between the research methodology and the methods used to collect data Congruity between the research methodology and the representation and analysis of data There is congruence between the research methodology and the interpretation of results Locating the researcher culturally or theoretically Influence of the researcher on the research, and vice-versa, is addressed Representation of participants and their voices Ethical approval by an appropriate body Relationship of conclusions to analysis, or interpretation of the data Overall appraisal: include, exclude, seek further information Hammond & Teucher, 2017 U Y Y Y Y N N Y N Y Include Hammond et al., 2015 Y Y Y Y U N Y Y Y U Include Hauken et al., 2019 Y Y Y Y Y N Y Y Y Y Include Iddrisu et al., 2020 U Y Y Y N N Y N Y N Exclude Keim-Malpass et al., 2013 Y Y Y Y Y N Y Y Y Y Include Kent et al., 2012 U Y Y Y Y N N Y N Y Include Kuhlthau et al., 2015 U N Y Y N N N Y N U Seek further information Larouche & Chin-Peuckert, 2006 U Y Y Y Y N N Y Y U Include Lehmann et al., 2014 U Y Y Y Y N N Y Y Y Include Lewis et al., 2012 U N N Y N Y N U Y U Exclude Lidington et al., 2021 U Y Y Y Y N N Y Y Y Include Love et al., 2014 U Y Y Y Y N N Y Y Y Include Magrath et al., 2021 U Y Y Y Y N Y Y Y Y Include Marshall et al., 2019 Y U U Y Y N N Y Y Y Seek further information Miller, 2015 U Y Y Y Y N N Y Y Y Include Mishra et al., 2018 U Y Y Y Y N N Y Y Y Include Panjwani et al., 2019 Y Y Y Y Y N N Y Y Y Include 52 Study Congruity between the stated philosophical perspective and the research methodology Congruity between the research methodology and the research question or objectives Congruity between the research methodology and the methods used to collect data Congruity between the research methodology and the representation and analysis of data There is congruence between the research methodology and the interpretation of results Locating the researcher culturally or theoretically Influence of the researcher on the research, and vice-versa, is addressed Representation of participants and their voices Ethical approval by an appropriate body Relationship of conclusions to analysis, or interpretation of the data Overall appraisal: include, exclude, seek further information Reed-Berendt et al., 2019 U Y Y Y Y Y Y Y Y Y Include Rees, 2017 Y Y Y Y Y Y Y Y Y Y Include Robinson et al., 2014 Y Y Y Y Y Y N Y Y Y Include Patterson et al., 2012 Y Y Y Y Y N N Y Y Y Include Smith et al., 2018 U Y Y Y Y Y Y Y Y Y Include Sodergren et al., 2018 U Y Y Y Y N N Y Y Y Include Thompson et al., 2009 U Y Y Y U N Y Y Y U Seek further information Tindle et al., 2018 Y Y Y U Y N Y Y Y N Seek further information Vanstone et al., 2021 U Y Y Y Y N Y Y Y Y Include Victorson et al., 2019 Y Y Y Y Y N Y Y Y Y Include Wallis et al., 2021 U Y Y Y Y N N Y Y U Include Walsh et al., 2019 U Y Y Y Y N N Y Y U Include Wicks & Mitchell, 2010 U Y Y Y Y N N Y Y U Seek further information Williamson et al., 2010 Y Y Y Y Y N N Y Y U Include Abbreviations: Y = yes; N = no; U = unclear
Thesis/Dissertation
eng
Nursing
Vancouver : University of British Columbia Library
Attribution-NonCommercial-NoDerivatives 4.0 International
Graduate
Haase, Kristen
Psychosocial challenges in adolescents and young adults affected by cancer : a systematic review of qualitative research
Text