Exploring Adolescents' Cancer Journey Through Photovoice: A Narrative Synthesis

Abstract

Purpose:

Photovoice is a novel and promising intervention for working with youth in healthcare settings. Despite this, few studies have examined the efficacy of photovoice as a clinical tool for working with teenagers who are on their cancer journey. To better understand the needs of teenagers with cancer and the ways that photovoice can be utilized to address these needs, a systematic review of the literature was undertaken.

Methods:

Keyword searches of six databases were completed, including MEDLINE, EMBASE, PsycINFO, Social Work Abstracts, Sociological Abstracts, and Health and Psychosocial Instruments. Searches were limited to articles focusing on the psychosocial needs of adolescents, aged 13–17, who were on active cancer treatment.

Results:

Sixty-four articles were identified that discussed the psychosocial needs of teenagers on active cancer treatment. The needs of these teenagers can be understood as being influenced by the physical changes and symptoms, psychological impact of diagnosis and treatment, short- and long-term social impacts of cancer, impact on holistic well-being, and need for clear, age-appropriate communication. Among these articles, only four articles used photovoice as a methodology and none examined the impact of photovoice as an intervention for teenagers who were currently on active treatment.

Conclusion:

Photovoice is uniquely positioned among other psychosocial interventions to help address the needs of teenagers on their cancer journey. Despite this, few researchers have examined the efficacy of photovoice as a psychosocial intervention for teenagers who are currently on active treatment.

Introduction

Adolescence is a period of change and flux characterized by transformations in a number of areas. Throughout this formative stage, adolescents go through a period of rapid physical changes, sexual maturation, as well as emotional, cognitive, and social development. This stage can also be characterized by a questioning of one's values, beliefs, and goals through the process of identity formation, a growing concern with and awareness of body image and self-esteem, and a greater desire for independence, coupled with an increase in the importance of peers.^1–5

While adolescence itself may pose a challenge for many healthy teenagers, a cancer diagnosis results in a marked disruption in the “normal” journey through this developmental phase. Patients who navigate adolescence while simultaneously adjusting to a cancer diagnosis and the demands of treatment often see one challenge compounded by the other.⁶ These teenagers may experience a “dual crisis” in trying to balance the developmental tasks of adolescence while also attending to cancer-related stressors.⁵ Establishing autonomy, personal identity, and developing relationships with peers and romantic partners remain important and essential tasks despite the diagnosis of cancer.

On average, 140 new cancer diagnoses have been made each year over the last 10 years among teenagers (aged 13–19 years) in hospitals across Ontario that report to the Pediatric Oncology Group of Ontario ([POGO], unpublished report, 2016). Despite the number of total diagnoses being relatively small, cancer is the largest cause of natural death among adolescents and young adults.⁷ Although improvements have been made in the treatment and survival of children and adults year over year, studies have shown that the same rate of improvement has not materialized among adolescents and young adults.^7–9 The lag in treatment outcomes points to a need to examine all aspects of adolescent cancer treatment.

The Hospital for Sick Children (SickKids) is a pediatric tertiary hospital in Toronto, a large urban setting in Ontario. SickKids serves children and teenagers until the age of 18 years in the Greater Toronto Area, as well as the province of Ontario. In 2016, a research program examined the efficacy of photovoice as a psychosocial intervention for adolescents on active cancer treatment. Inspired by the clinical experience and expertise of the oncology social workers at SickKids, the program involved a systematic review of the current literature on adolescents on cancer treatment and the implementation of a photovoice group (Georgievski, Shama, Lucchetta, and Niepage, manuscript in preparation, 2017).

The following article presents a synthesis of the systematic literature review to better understand the various psychosocial needs that arise in treating teenagers with cancer and the role that photovoice plays as a novel and innovative methodology for helping to address their needs. Photovoice, as a tool, facilitates a discussion that highlights and addresses some of the challenges faced by a group, while also promoting self-advocacy, self-esteem, and skill development in an underserved population. By understanding the unique experiences, needs, and potential opportunities that this population presents, clinicians, researchers, and policy makers can better address the different factors that influence engagement with care, treatment adherence, and medical and psychosocial outcomes.¹⁰

Methods

The current synthesis was developed to better understand the (i) biological and psychosocial needs and strengths of adolescents with cancer, (ii) role of photovoice as a potential intervention for addressing challenges and fostering resilience among these teenagers, and (iii) role of photovoice in encouraging action and influencing policy. As such, a systematic review of the current literature was undertaken to understand the impact of a cancer diagnosis on adolescents' health and well-being and how photovoice as a methodology has been utilized as an intervention for teenagers who are currently on treatment.

The literature review utilized six databases: MEDLINE, PsycINFO, Social Work Abstracts, EMBASE, Sociological Abstracts, and Health and Psychosocial Instruments. Only those that had a particular focus on psychosocial literature were included. Databases, such as PubMed, were omitted to allow for a more attuned review of the literature. The search strategy for each database is listed in Table 1. Database searches were limited to English language publications that focused on adolescents aged 13–17 and published from January 2007 to July 2016. Database searches were supplemented with additional keyword searches for photovoice, photo novella, participatory research, community-based research, and visual methods, as well as manual reviews of reference lists for any relevant articles. These additional searches helped formulate the background of our synthesis and were included where appropriate.

Table 1.

Database Search Strategy

1. Participatory research or research group^*	27,051
2. “Cancer patients” or “oncology patients”	293,005
3. Limit 2 to “adolescent (13 to 18 years)”	205,069
4. Limit 3 to English language	185,264
5. Limit 4 to adolescent <13 to 17 years>	9,549
6. Limit 5 to year “2007-current”	5,829
7. 1 and 6	3
8. 1 and 2	367
9. “Needs assessment”	48,022
10. 2 and 9	970
11. Youth or adolescent^* or teen^* or “young adults”	2,508,399
12. 11 and 11	90
Total	490

Indicates truncated keyword.

The database searches yielded 490 references that were further screened for relevance to the research questions. Using the title, abstract, and keywords of each article, references were included if they addressed the psychosocial factors influencing the health of adolescents with cancer and/or utilized photovoice as a methodology for working with teenagers with cancer. This screening process yielded a final data set of 64 articles. An additional search was conducted to identify articles that utilized photovoice to examine the experiences of adolescents with cancer. While four articles were identified that utilized photovoice with a cancer population, only one of these articles specifically used photovoice with adolescents. These 64 articles are presented in a narrative synthesis on the psychosocial needs of adolescents with cancer and the role of photovoice as a novel, therapeutic intervention for meeting these needs.

Results

Issues facing adolescents throughout cancer treatment: an integrated framework

Adolescent cancer patients face a very different treatment course than children and adults by virtue of the complex and rapid shifts that define this developmental period. There appears to be a prevailing set of cancer-related disruptions that are experienced by teenagers as a result of their life stage and unique disease journey.¹¹ The natural developmental process enters a holding pattern or “suspension” following a cancer diagnosis, often with lasting consequences even after successful treatment of the disease.¹² The effects of treatment are often found to interfere with and impact adolescent development in four key areas: (i) physically, (ii) psychologically, (iii) socially, and (iv) in their holistic sense of well-being.¹³ Furthermore, the literature articulates significant concern with teenagers' informational needs not being met and advocates for a different approach toward communicating and interacting with this population.^14,15

Physical changes and symptoms

Physical changes are often visible to all involved in caring for adolescent cancer patients throughout their treatment. Fatigue, vomiting, hair and weight loss all feature prominently in self-reported concerns for teenagers in treatment.^16,17 Physical pain, however, is most frequently addressed in the literature, and is most often identified as being the most challenging and central part of their experience.¹⁸ Cancer and the premature confrontation with mortality may challenge feelings of invincibility and result in feelings of betrayal by their own body.¹⁹ Female cancer patients routinely identify higher levels of anxiety about their changing appearance, particularly relating to hair loss, weight gain, and nasogastric tube visibility, while male patients raise significant concern regarding the physical symptoms they experience.²⁰

Psychological impact of diagnosis and treatment

Adolescents living with cancer are at greater risk of distress than their healthy peers, with studies reporting a range of 17%–30% of teenage patients experiencing clinical levels of anxiety, depression, as well as post-traumatic stress symptoms. Furthermore, clinical levels of distress may last up to 3 years following a diagnosis in some instances.^1,21,22 Reinforcing these findings, other studies found that teenagers diagnosed with cancer often have higher rates of psychiatric symptoms compared to their healthy peers.^23,24 Teenagers in one study showed consistent and chronic distress, suggesting that psychological and post-traumatic stress symptoms are a persistent challenge across the course of treatment, with 25% of the sample reporting nine or more psychiatric symptoms.²⁵ Across most of the studies examined, teenagers expressed worry about treatment outcomes and the risk of recurrence, often finding themselves torn between needing psychological support and a desire to protect family and loved ones from knowing the multifaceted ways in which the diagnosis and treatment are impacting them, causing further psychological distress.^2,16,22,25

Short-term social impacts of cancer

Teenagers face a number of social challenges on receiving a cancer diagnosis, forcing them away from their emerging independence and important peer interactions and toward realignment with their families.^16,17,26 This reliance on family may result in higher reported levels of familial stress, effectively putting these teenagers in a place where family amounts to both the greatest source of social support and a catalyst for significant tension.^23,24 Adolescent cancer patients in many studies report an overwhelming sense of isolation and poor perceptions of social support, as many find themselves severed from the normalcy that school provides and the important influence of peers.¹⁶ Accessing treatment in a pediatric or adult setting often leads many teenagers to feel as if they are a minority group, as treatment needs limits their interactions with other teenagers.²⁷ Due to lack of practice, many teenagers report a loss of social skills and research has established that many are unable to negotiate risky behavior and intimacy due to fear of physical limitations or rejection by others.^3,21

Given the importance of peer influence and engagement for this population, it is important that healthcare providers work to help foster greater ties between teenagers with cancer, allowing them more chances to engage in “normal” teen activities.²⁸ Several studies have evaluated such clinical interventions, with all advocating for helping teenagers engage in everyday activities to assist in the development of higher self-esteem, self-efficacy, and social skills.^4,5 Other studies point to the importance of teen-only settings, noting the many psychosocial benefits of peer support and a marked improvement in quality of care and quality of life as clinicians become more proficient in working with this age group.^9,28

Long-term social impacts

The literature also suggests a disproportionate personal and socioeconomic impact on this population as a result of delays in educational attainment and workplace milestones.²⁹ The educational burden on this population is evident as teen cancer survivors are more likely to report underachievement in coursework, absences, learning disabilities, and the need to repeat a year compared to their healthy counterparts—with lasting impacts through adulthood and into employment.^21,23,30 In addition, studies show that teachers are more likely to perceive students with cancer as less engaged as a result of observed fatigue.^21,23 While reintegrating back into school provides many teenagers with a sense of renewed normalcy, it may also cause significant worry for some as they transition back into an environment where they feel misunderstood, left behind, and as if they have lost opportunities they can never regain.^3,22,31

The expectations that others have of cancer survivors in the work force often are markedly lower than their healthy peers.³² Adolescent and young adults living with cancer are six times more likely to report health-related unemployment and twice as likely to report being unemployed and looking for work. Family, adolescents, and survivors of adolescent cancer all discuss concerns regarding employment and health-related absences, the physical demands of work, and an inability to find work due to perceptions others have of their health.^32,33

Cancer's impact on holistic well-being

The need for a sense of normalcy among adolescents diagnosed with cancer features prominently within the literature. Each teen who receives a cancer diagnosis is faced with a premature confrontation with death, something many of his or her healthy peers cannot fathom at this developmental stage.³² Facing a cancer diagnosis forces teenagers to confront existential questions about life, death, and presents a significant opportunity for meaning making.

Faith and culture play a significant role in how adolescents navigate cancer, as these factors allow them to build a foundation on which they are able to make sense of their experiences and provide them with the belief that they can overcome these challenges.^18,33–35 While many struggle at first to comprehend and adjust to their diagnosis and treatment, many are able to adapt and see positive growth despite difficulties. In much of the literature, faith and culture are closely linked. Where faith allows teenagers to explore a higher purpose, this is often within the context of cultural and ethnic communities. This suggests there is significant resiliency within this population that healthcare providers can help foster. A cancer diagnosis also provides an opportunity for post-traumatic growth for many teenagers, through which their experiences and the meaning they derive from them help many develop an emotional maturity that surpasses their healthy peers.²⁸

Informational needs of adolescents in cancer treatment

In addition to the psychological and social distress that physical changes and side effects produce, teenage cancer patients routinely report that their information needs are unmet.³⁶ In one study, an overwhelming 57% of adolescent patients reported that staff failed to communicate in at least one area of concern.³⁷ This may be the result of a tendency for parents and clinicians to shield adolescents from negative information, thereby inadvertently restricting the teen's independence.^12,38 Age-appropriate communication is needed to reshape the personal/professional interactions and prevent teenagers from feeling patronized, unheard, and burdened by repeated questions about medication and diagnosis.^15,27 Effective communication has also been shown to help teenagers better maintain and regulate emotions, manage stress, and cope with treatment side effects.³⁸

Shifting the way that clinicians communicate with adolescents can assist in establishing a greater sense of control and ownership over treatment, which in turn can then be linked to better psychosocial outcomes throughout the treatment process.^1,14,15,24 The literature places teenage patients in a unique position between family-centered care and patient-centered care, and this potentially tenuous position is an important consideration for providing care.^12,39,40 Some teenagers require and use parents as mediators for difficult topics, such as fertility, while others request that their voice be brought into the conversation and that they be included in all aspects of their care.^40,41 As such, each individual requires an approach that is responsive to their individual and family circumstances, balancing teenagers' competence and familial dynamics.

Photovoice and participatory-action research

Art-based data collection has the ability to elicit information, evoke feelings, and stir memories in a way that focuses conversation and acts as a catalyst for later discussions.⁴² Photovoice is a methodology that seeks to incorporate these strengths. First emerging within health and public health literature in the mid-1990s, after being pioneered by Wang and Burris,⁴³ photovoice aims to empower the participants who researchers seek to study, actively involving them in the shaping and implementing of the research. Photovoice enables marginalized populations to educate others by promoting dialogue, encouraging action, and influencing policy.^43–46

The theoretical basis of photovoice is a synthesis of empowerment education, feminist theory, and documentary photography, with participatory action woven throughout each of these founding pillars.⁴³ Empowerment education is rooted in individual development, discussion, and fostering community participation in the process of institutional change. Through the use of images and words, participants are able to communicate their experiences, vision, and ideas. Similarly, photovoice borrows from feminist theory the desire to render visible the individual experiences in peoples' lives and critique the larger socially and politically structured forces that function to shape and reinforce these outcomes.^43,47 Photovoice engages in a process of reflection by, with, and for the communities that researchers are hoping to better understand. One of the ways this is accomplished is through the use of photography: by putting a camera directly into the hands of those who might otherwise not have the opportunity to have their voices heard, record their narratives, and reflect back on themselves and others the different facets that shape their lived reality.

Photovoice has increasingly been used throughout health and public health to explore the experiences and involve those members of society who are often the passive recipients of policy interventions. As a methodology, photovoice has been utilized to understand the strengths and needs of women living in rural China,⁴⁵ teenagers living in the inner city America,⁴⁸ and racialized women living with and impacted by HIV and AIDS.⁴⁹ Despite its adaptability to a range of settings, populations, and issues, each project shares core elements: (i) the selection and discussion of themes of interest by group participants; (ii) the distribution of cameras for participant photography; (iii) the selection of salient and important photos for discussion in the group, by participants rather than researchers or clinicians; (iv) a written narrative developed by participants of what each photo illustrates and means to them, and what steps can be taken to address the concern or enhance the strengths that were identified; and (v) the presentation of participants' photos to stakeholders to involve them in the policy process and enhance community capacity.^43,48–50 All of these steps are led by and decided on by group consensus and driven by participants, not imposed by clinicians or study lead.

Participants often meet on a weekly basis to discuss the photos that mean the most to them, based on topics previously agreed on by the group. The number of group sessions ranged from 2 to 15. While photos are sometimes part of the data analysis, often the conversation and dialogue are the primary source of data and benefit to researchers and group participants alike, with these discussions recorded, transcribed, and coded to expose the common themes that emerge throughout the diverse experiences of each participant. Photovoice renders visible the strengths and challenges faced by communities, creating a forum for discussing these different factors and fostering critical inquiry into what can and should be done to harness knowledge within underserved populations to the betterment of those affected.

Adolescents, cancer, and the potential for photovoice

Group work among adolescents with cancer has been shown to provide a sense of normalcy, acceptance, and understanding, while also helping teenagers to develop self-efficacy and boost confidence.^4,5,16,51 The literature strengthens the rationale for engaging in participatory-action research, and specifically photovoice with teen cancer patients, as this provides an opportunity for these teenagers to develop new skills, meet and engage with peers, and advocate for how healthcare providers and policy makers can better meet their unique needs within a pediatric setting. One of the greatest benefits of photovoice is the therapeutic environment it fosters. In a study examining the experiences of African American cancer survivors, researchers found that one of their participants photographed the other group participants as their sole source of meaningful support when it came to their cancer journey.³³ In another study, participants also raised the psychosocial benefits they experienced as a result of engaging in a facilitated dialogue about shared experiences. As a methodology, photovoice addresses one of the most salient themes that emerge from the literature on adolescence and cancer: teenagers need greater access to and a more meaningful connection with other adolescents living with cancer.

Furthermore, several studies have shown that the concerns and issues thought most pressing by clinicians are not in fact those raised most often and felt most important by teenagers in active treatment.³⁹ One study found that adolescent cancer patients consistently ranked their need for peer interaction higher than what their healthcare providers perceived it as.¹³ Given that teenagers occupy a difficult spot between family-centered care and patient-centered care, it becomes important for clinicians, researchers, and policy makers to ask about, hear from, and incorporate their voices and experiences when considering and formulating treatment plans and interventions.^14,39

When looking at the available research, only four studies used photovoice with a cancer population.^33,35,52 Strikingly, only one study has been published, which examined the experience of adolescents diagnosed with cancer, although done so in the survivorship context and not while on active treatment.³⁴ Regardless, these studies share common themes that illustrate the considerable impact that geographic location, family relationships, and social support have on one's experience throughout treatment. Across these four studies, participants highlighted the importance of culture and faith as a means to cope with and make sense of one's experience, speaking to the need for a holistic approach to people's well-being.^33–35,52 Photovoice fosters an opportunity to understand intensely personal and socially constructed forces, providing participants with a vehicle to navigate treatment, foster resiliency, and successful post-treatment transitions.

While a broad array of literature on adolescence and cancer emphasizes the impact of stigma in the lives of teenagers with cancer, photovoice helps provide context and detail on the strengths and opportunities for growth that emerge throughout people's cancer narratives. While much of the mainstream cancer literature focuses on deficits, photovoice provides the opportunity to highlight the positive forces that shape people's cancer experience. Attunement to one's culture and faith; moments that help individuals reframe their identity and foster motivation; and assisting individuals with reconnecting with their family, friends, and communities all feature prominently within the photovoice studies on cancer.^33–35,52 Photovoice helps illustrate the intersection between treatment and the unique viewpoint of each person, allowing healthcare providers, policy makers, and researchers the opportunity to understand how those diagnosed with cancer overcome difficulties and adjust to new roles and expectations within their families and communities. While offering stakeholders insight into the wants and needs of a population, photovoice also illuminates the strengths and possibility to tap into unrecognized resilience and opportunity.

While other studies have sought to understand the experience of teenagers actively in treatment.^{16,18,21,32,39} Yi and Zebrack³⁴ are the only authors to have used the photovoice methodology in seeking to understand the treatment experiences of adolescents with cancer, although in the context of survivorship. The absence of literature on photovoice with teenagers in active cancer treatment presents a stark gap in the literature and an opportunity to utilize this methodology with this population. Given the unique challenges that this population faces, using photovoice has the potential to affect change, both at the individual and institutional level.^43,47,48,53 Photovoice groups provide an engaging, innovative, and therapeutic space to meet and interact with other adolescents living with cancer, promote skill development, and empower teenagers to take on a meaningful role in advocating for their own needs and the needs of others like themselves.

Discussion

Cancer diagnoses can often interrupt adolescents' development. Teenagers with cancer are often confronted with unique challenges that may significantly impact their development, health, and well-being. To better understand these challenges and the needs that arise from them, Warner et al.¹³ proposed understanding the needs of teenagers with cancer through four domains: physically, psychologically, socially, and in their holistic well-being. Additional research has expanded these domains to include an understanding of the informational needs of these teenagers.¹⁶ Our synthesis built on the work of these previous researchers to further expand these frameworks.

Teenagers with cancer are confronted by a variety of physical and psychological changes associated with their diagnosis. The physical symptoms of their diagnosis and treatment can often increase teenagers' levels of anxiety and distress, particularly around their appearance and the physical symptoms they experience. These increased levels of distress can contribute to the development of psychiatric symptoms that further exacerbate the effects of a cancer diagnosis. Despite higher levels of distress and psychiatric symptomology, teenagers are often torn between seeking psychological support and protecting their families. As teenagers' families become their main source of socializing and support, teenagers often have to negotiate between the need for support to combat feelings of isolation, distress, and added family stress.

Adolescents on active treatment often perceive a lack of social support, leaving them feeling isolated. As teenagers are removed from school for prolonged periods of time, they do not engage in important peer-to-peer interactions, which can negatively impact the development of important social skills. Receiving care in pediatric or adult oncology centers, they also have few opportunities to engage in interactions with other teenagers, increasing their dependence on their families for social support and engagement. Prolonged absences from school can also negatively impact adolescents' educational attainment. This can leave many teenagers with fewer opportunities for postsecondary education and future employment. As many teenagers transition back into their communities after treatment, they often feel misunderstood, perceive themselves as lagging behind their peers, and are afforded less opportunities for school and work.

Although the literature often focuses on the challenges of a cancer diagnosis, many of these teenagers are strong and resilient, using their cancer experience as an opportunity for post-traumatic growth. This is particularly true among those who have strong familial, cultural, and/or religious identities. For many, the challenges of their cancer diagnosis are an opportunity to adapt and see positive growth, building a foundation for future challenges that they encounter in their lives. Teenagers' resilience can be supported by clinicians and healthcare providers in a number of ways, but most importantly through clear, age-appropriate communication. When teenagers' informational needs are met by clinicians, they are more empowered, better able to cope with stress, and can have improved psychosocial outcomes post-treatment.

The experiences of the adolescents' cancer journeys provide important insight into their needs and the challenges they face. As such, teenagers' stories are an important clinical tool that should be harnessed during treatment. Photovoice is uniquely positioned among other clinical interventions to help engage teenagers on their cancer journey and create opportunities for teenagers to openly share their experiences with clinicians. Through the therapeutic environment that it creates, photovoice allows teenagers to have a space where they can engage with their peers, develop new skills, and advocate for their needs. These experiences can help them to feel more connected to their peers, supported on their cancer journey, and empowered that their voices can promote positive policy change.

Despite this, few researchers have examined the role of photovoice as a therapeutic intervention for adolescents with cancer. Those who have, have primarily focused on cancer survivorship and the role of photovoice in helping survivors redefine their identities, reconnect with their families, and foster their resiliency. In studies that have used these methodologies, photovoice has helped those on active treatment learn how to share their experiences with others, including peers, family, and healthcare professionals; focus on the positive forces that impact their cancer journey, helping to build stronger identities and foster resiliency; and engage in a therapeutic space with others who share their experiences, allowing them to combat isolation and create meaningful relationships. Thus, further research needs to examine the role of photovoice as a therapeutic intervention for teenagers who are on active treatment, particularly within a hospital setting. Through the use of photovoice, teenagers on active cancer treatment may have an opportunity to become more empowered and connected, helping to motivate them to attain more positive treatment outcomes, advocate for their needs and effect change within their healthcare setting, and develop into stronger, more resilient, and healthier adults.

Conclusion

Adolescents with cancer face unique challenges that can significantly impact their development, health, and well-being. The impact of the cancer journey on these teenagers can affect their psychosocial development, their relationships with their families and peers, and the opportunities they are given to foster their maturation into adulthood. Among various interventions, photovoice is uniquely positioned to address the psychosocial and developmental needs of adolescents on active cancer treatment. Despite this, few studies have examined the efficacy of photovoice as a psychosocial intervention for this population. Thus, to further understand the role of photovoice in addressing the needs of teenagers with cancer, further research is needed that examines the efficacy of photovoice as an intervention and methodology for working with teenagers who are currently on their cancer journey (Georgievski, Shama, Lucchetta, and Niepage, manuscript in preparation, 2017).

Footnotes

Acknowledgments

The research team acknowledges that M.N. and G.G. were funded by grants from the Garron Family Cancer Centre Nursing and Allied Health Summer Student Program at the Hospital for Sick Children.

Author Disclosure Statement

No competing financial interests exist.

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