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The adolescent’s experience of cancer: An integrative literature review
Collegian 26 (2019) 492–501
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The adolescent’s experience of cancer: An integrative literature review Donna Drew ∗ , Ashley Kable, Pamela van der Riet School of Nursing and Midwifery, University of Newcastle, University Drive, Callaghan, New South Wales, 2308, Australia
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Article history: Received 27 September 2018 Received in revised form 18 December 2018 Accepted 16 January 2019 Keywords: Adolescent Cancer Experience Literature review
a b s t r a c t Aim: This integrative review appraises the literature that explores the experiences of the adolescent diagnosed with cancer. Background: The cancer experience has an impact on the way the adolescent lives their life, their future hopes dreams and fears, their health and wellbeing. Healthcare professionals require an understanding of what the adolescent experiences after a diagnosis of cancer and during the treatment experience to be able to provide optimal age appropriate care. Methods: The review was conducted following Whittemore and Knafl’s (2005) framework. A comprehensive search using the following four databases, CINAHL, MEDLINE, PyschINFO, Embase was undertaken for the period of 2005–2016. Google scholar, healthcare policies and guidelines reference lists were also searched. Screening and appraisal of 911 articles resulted in 22 articles being included in this review. Findings: Three themes were identified: ‘Losing what I know - this is what makes me different’, ‘Communication and information sharing - the need to know’, and ‘The importance of friends, peers and relationships’. Conclusion: This review reports that healthcare providers should be aware of the changing selfperceptions the adolescent experiences throughout the cancer journey. Accessing this information will enable healthcare providers to determine more appropriate care when these adolescents are feeling most vulnerable. The review identified there is limited information about the experience of the younger adolescent (11–15 years) with cancer. Future research may benefit from focusing on the stage of development of the adolescent with cancer. © 2019 Australian College of Nursing Ltd. Published by Elsevier Ltd.
Summary of relevance Problem Healthcare providers need to be aware of the changing selfperceptions the adolescent experiences throughout the cancer journey. There is limited information about the experience of the younger adolescent (11–15 years) diagnosed with cancer. What is already known Adolescents with cancer have unique healthcare needs that affect their quality of life, their long-term health, their ability to engage socially, and attend school. Currently dedicated Adolescent and Young Adult (AYA) cancer services offer care to adolescents and young adults aged from 15 years to 25 years. To date, there is limited research on the experience of the younger adolescent (11–15 years) diagnosed with cancer.
∗ Corresponding author. E-mail addresses: [email protected] (D. Drew), [email protected] (A. Kable), [email protected] (P. van der Riet). https://doi.org/10.1016/j.colegn.2019.01.002 1322-7696/© 2019 Australian College of Nursing Ltd. Published by Elsevier Ltd.
What this paper adds This review highlights cancer related issues for the older adolescent. Future research would benefit from focusing on the younger adolescent (11–15 years) with cancer, with emphasis on how a cancer diagnosis impacts the younger adolescent’s developing identity, sexuality, and social interactions, and engagement with social media, particularly for adolescents in rural and remote areas.
1. Introduction Adolescence is referred to as a transitional phase of growth and development between childhood and adulthood. Adolescence can be divided into three stages; Early Adolescence 11–14 years, Middle Adolescence 15–17 years and Late Adolescence 18–20 years (Bashe, 2003). A diagnosis of cancer during adolescence is an interruption to the developmental tasks of adolescence and has the potential to challenge the initiation and evolving of peer relationships and positive body image. Loss of control, powerlessness and fatigue, reported as treatment related issues contributing to this
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interruption (Fochtman, 2011; Wu, Chin, Haase, & Chen, 2009). Adolescents with cancer are emerging as a distinct group of patients from the paediatric and adult cancer population. Developing an understanding of the cancer experience with consideration of the developmental capabilities of the adolescent is essential for healthcare providers to be able to offer comprehensive and sensitive care. Adolescents today experience life very differently to previous generations. Technology, advertising, social media platforms, changing family patterns and education opportunities create a different set of pressures and experiences for the adolescent. Kim, White, and Patterson, (2016) suggest adolescents experience significant challenges due to a cancer diagnosis alongside their unique developmental needs and their need for relevant information and support. The cancer experience has an impact on the way the adolescent lives their life, their future hopes, dreams and fears, and their health and wellbeing (Carlsson, Kihlgren, & Sørlie, 2008; Mattsson, Ringner, Ljungman, & von Essen, 2007; Ramini, Brown, & Buckner, 2008; Stegenga & Macpherson, 2014). The aim of this review was to critically appraise the literature and to explore the experiences of the adolescent diagnosed with cancer.
2. Aim To critically appraise the literature that explores experiences of the adolescent diagnosed with cancer.
3. Methods This review uses Whittemore and Knafl’s (2005) process, in conducting an integrative review. An integrative review was chosen because it summarises and critiques a specific research topic by analysing previously conducted research studies and incorporates both qualitative and quantitative studies. Information gained is more comprehensive and will assist in contributing to improving care and clinical practice standards whilst identifying gaps requiring further research. 3.1. Literature search strategy A search of the literature was undertaken using the (Kable, Pich, & Maslin-Prothero, 2012) 12 step framework for documenting a search strategy, prior to critiquing and synthesising the retrieved literature. A search was conducted using the following databases: CINAHL, MEDLINE, PyschINFO and Embase, to locate peer reviewed articles. References from identified papers were screened to find additional papers that did not appear during the original literature search. Google scholar, and reference lists of relevant healthcare policies and guidelines were also searched. The search was limited to research related to humans and published in English between January 2005 and December 2016. Prior to 2005 there were few published studies that primarily focused on the adolescent’s experience of cancer. The following terms and Boolean operators AND/OR were used (‘Adolescent’, or ‘youth’, or ‘young people’, or ‘teenagers’, or ‘AYA (adolescent young adult)’), and (‘cancer’, or ‘oncology’), and (‘illness experience’, or ‘life experience’, or life change events’). The search terms used were directly related to the purpose of the review and were found in the article title, abstract or discussion sections of the articles. Search terms were tested to effectively identify types of articles that met the inclusion criteria. The authors undertook this step prior to conducting the search in all search engines to determine terms that did not locate relevant literature.
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3.1.1. Inclusion criteria The following inclusion criteria were applied: 1 Peer reviewed original research, and patient journals and blogs that reported findings about the adolescent diagnosed with cancer or referred to their experience of cancer (If previous systematic and literature reviews were located they were considered as valuable background resources if their purpose or aim was relevant to the topic of the review). Publications that were not original research were excluded because this review sought to determine the evidence to inform future research. 2 The study population included adolescent participants (11–20 years) or discrete groups of adolescents. 3.1.2. Exclusion criteria The following exclusion criteria were applied: 1 If they did not include any participants between the 12–17 years of age. 2 Systematic or literature reviews, commentaries, discussion papers, editorials. 3 If the experience reported was not about adolescents with cancer. 4 Papers written in a language other than English 3.2. Data evaluation The search of databases and search engines retrieved 911 articles and after duplicates were removed, 794 articles remained. Following screening for relevance, 718 articles were excluded and 76 articles remained. These articles were assessed for eligibility and determined to meet inclusion criteria if they reported the experience of the adolescent diagnosed with cancer. Articles retrieved, screened and critically appraised are presented in a PRISMA flowchart (Fig. 1), (Moher, Liberati, Tetzlaff, & Altman, 2009). Twenty-nine articles were critically appraised using the Critical Appraisal Skills Program (CASP) checklist for qualitative research (Critical Appraisal Skills Program, 2017) and the McMaster Critical Review Form, Quantitative Studies (Law et al., 1998) for reporting observational studies. The reasons for excluding seven studies after using the CASP checklist included: conference abstract, editorial, insufficient explanation of research design and participant selection, need for a support group, parent and sibling focus and adult focus. Twenty-two articles have been included in this review. Qualitative designs were used in 21 articles and one used a quantitative design. Studies included were conducted in Sweden (4); Canada (5); United Kingdom (2); United States of America (8); Australia (1); New Zealand (1); Taiwan (1). Sample sizes ranged from 1 to 296 participants. The study settings were: paediatric inpatient, outpatient treatment centres; adult treatment centres; participant’s homes; telephone calls; conference workshops; mailout survey and review of illness blogs. Data collection methods included open-ended semi structured interviews, focus group interviews, open ended survey and field observation notes. Participant ages ranged from 4.5 to 35 years, and 77% of studies focused on adolescents 13–35 years. Varying time frames along the illness trajectory were included and ranged from three months from diagnosis up to five years after completing treatment. Geographic locations included both urban and regional locations. 3.3. Data analysis The authors used a consistent data analysis approach for all papers, and this comprised the following steps. Data analysis commenced with a logical reduction (Whittemore & Knafl, 2005), then reduced by identifying the adolescent’s experience of cancer in the
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Table 1 Summary of articles. Study aim
Study Design /Discipline
Data Collection Method
Participant age, Number of participants, Gender
Setting
Summary of relevant findings / themes
Limitations
Carlsson et al., Sweden, 2008
To illuminate fear in adolescents with personal experience of cancer
Qualitative Phenomenological
Open ended interviews
14-16 years, 6 participants Female (n=6) Off treatment (n=6)
Paediatric oncology outpatient setting
The experience of fear related to a diagnosis of cancer and threat to personal self
Cassano et al., Canada, 2008
To explore and describe adolescent’s perceptions of a teen support group
Qualitative Descriptive / Social Work
Focus group, interviews, field observation notes
14-20 years, 11 participants Male (n=6) Female (n=5) On treatment (n=4) Off treatment (n=7)
Paediatric oncology treatment centre
Feeling normal and sharing experiences in a group setting
Einberg et al., Sweden, 2015
To describe perceptions of friendship during cancer treatment
Qualitative Descriptive / Nursing
Focus Groups
Paediatric oncology treatment centre, Local library, Conference room local hotel
Promoting friendships, feeling normal, maintaining contact and social interactions with peers
Fern et al., England, 2013
To understand the cancer experience for teenagers and young adults and to expand on previous conceptual models
Qualitative Participatory / Action research
Semi-structured peer to peer interviews, workshop
8-12 years, 15 participants Male (n=10) Female (n=5) Participants were on and off treatment <12 yrs n=11 13-25 years 11 participants Male (n=5) Female (n=6) Off treatment (n=11) >20 years n=8
Varied interpretations of the word fear. Participant attitudes dictated responses. The authors comment on the number of participants as being a limitation Participation depended on how the patient was feeling on the day. Some group members may have felt more comfortable than others to speak Developmental differences of interactions of 8 and 12 year old patients
Workshop
Life changing impact of diagnosis, information giving, place of care, role of health professionals, coping, psychological support, life after cancer
Flavelle Canada, 2011
To analyse a 90 page journal and identify key themes
Qualitative Phenomenology
Analysis of a 90 day journal
15 years 1 participant Male (n=1) Three months prior to his death
Participant’s home
Adolescent development, the escape from illness, changing symptoms, spirituality, relationships
Fochtman, USA, 2011
To describe the meanings of the lived experience for the adolescent during cancer treatment
Qualitative Phenomenology / Nursing
13-19 years 7participants Male (n=6) Female (n=1) On treatment (n=7)
Paediatric oncology treatment centre, and participant’s home
Holistic support during the illness trajectory, interdisciplinary care, social support school integration
Keim-Malpass et al, USA, 2016
To understand how adolescent’s experience cancer progression and the use of illness blogs
Qualitative Descriptive / Nursing
Interviews if required a second interview was conducted to expand on information from first interview and validate findings Text data from online blogs was reviewed
13-18 years 7 participants
Review of illness blogs
Normalising bad news given, the impact of disease progression, the concept of time
Larouche, Chin-Peuckert, Canada, 2006
To explore perception of body image and the impact of this perception on everyday life
Qualitative Descriptive / Nursing
Semi structured interviews, two interviews per patient,
14-17 years 5 participants Male (n=3) Female (n=2) On treatment (n=5)
Oncology treatment centre
Adolescent perception of being different, importance of peers whilst adjusting to a new normal
Focus was from the perspective of the cancer survivor, relapse and end of life care not reflected. The authors comment on the number of participants as being a limitation. Analysis of one journal and one adolescent’s experience, the publication of these journals is uncommon Female experience not represented Participants resided in differing geographical locations
Participants who took part may not share the same experiences as the adolescent who is digitally savvy or who does not blog or have access to various online platforms. Small number of participants only those willing participated
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Author/s, Country, Year
Table 1 (Continued) Study aim
Study Design /Discipline
Data Collection Method
Participant age, Number of participants, Gender
Setting
Summary of relevant findings / themes
Limitations
Lewis et al, Australia, 2013
To explore the experience of cancer and how it affects relationships.
Qualitative Descriptive
16-29 years 27 participants Male (n=12) Female (n=15) Off treatment (n=27)
University of Sydney offices, family home or telephone
The impact of cancer care and shift in relational priorities during adolescence and young adulthood
Trustworthiness and rigor are not discussed
Mattsson et al, Sweden, 2007
To explore negative and positive consequences of cancer during adolescence, experienced two years after diagnosis To identify aspects of care and needs of teenagers and young adults diagnosed with cancer
Qualitative Longitudinal
Participants could engage in 1,2 or 3 interviews, An opportunity was offered to work with an artist to create a self-portrait of their experience with cancer. Semi structured interviews
Three Swedish paediatric oncology treatment centres
The impact of cancer knowledge, positive and negative consequences related to care
Part of a larger study with unequal numbers of on and off treatment participants
Qualitative
Focus group interviews
Identify adaptive strategies adolescents with cancer use.
Roy’s Adaptive Model / Nursing
Structured interviews
Five adult oncology treatment centres and two paediatric oncology treatment centres Haematology/ Oncology treatment centre
Identifying and meeting the unique care needs of teenagers and young adults diagnosed with cancer
Ramini et al, USA, 2008
Groups were mixed in gender and age, which may have influenced discussions around sensitive topics. Small sample size and age range of respondents
Stegenga Macpherson USA, 2014
To explore and describe themes common to adolescents with cancer
Qualitative Longitudinal Descriptive / Nursing
Stegenga Macpherson USA, 2009
To explore the lived experience of being diagnosed with cancer from the perspective of the adolescent To identify and explore appearance related concerns relating to the experience of cancer and their psychosocial impact
Qualitative, Phenomenological
In depth interviews within first two months after diagnosis, then quarterly thereafter for the first year Semi structured interviews within the 4 to 6 months of being diagnosed with cancer
15-21 years 38 participants Male (n=22) Female (n=16) On treatment (n= 9) Off treatment (n= 29) 15-31 years 44 participants Male (n=16) Female (n=28) Off treatment (n=44) >20 years n=23 16-25 years 4 participants Male (n=1) Female (n=3) Off treatment (n=4) Mean age 21 years 12-17 years 15 participants Male (n=5) Female (n=10)
13-17 years 10 participants Male (n=1) Female (n=9) On treatment (n=10)
Paediatric oncology treatment centre or over the phone
Information to increase knowledge base and coping skills
One perspective of the cancer experience, initial diagnosis.
14 -19 years 6 participants Female (n=6)
Participant’s home
The ongoing impact of appearance changes, holding onto being normal, the meaning of cancer on completing treatment, finding the positive and increased appreciation, healthcare provision
Males not included due to their age and maturity. Recruitment staff did not include those they considered vulnerable, and who did not consider appearance to be important. Time from completing treatment may have influenced findings
Olsson et al, Sweden, 2015
Wallace et al, United Kingdom, 2007
Qualitative Interpretive Phenomenological
Semi structured interviews with adolescents who completed treatment in the previous two years
Paediatric oncology treatment centre or over the phone
Coping behaviours related to four adaptive modes physiological, self concept role function and Interdependence The adolescent identity develops over time, a diagnosis of cancer requires integration of the two.
Interviews missed due to scheduling and time point from diagnosis
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Author/s, Country, Year
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496
Table 1 (Continued) Study aim
Study Design /Discipline
Data Collection Method
Participant age, Number of participants, Gender
Setting
Summary of relevant findings / themes
Limitations
Wesley et al, USA, 2013
To determine the relationships between physical symptoms, perceived social support and affect and to test the role of perceived social support as a moderator of the relationship between physical symptoms and affect
Quantitative Observational Study
Questionnaire packages, demographic, physical symptoms, perceived social support, positive and negative affect, stressful life events and family functioning scales were used to measure patient experiences
13-19 years, 133 potential participants, 123 agreed to participate Complete data 102 77% participant response
Inpatient and outpatient children’s hospital
The study used a range of validated instruments to measure physical symptoms, perceived social support, positive and negative affect, stressful life events and family functioning. Study sample was not representative of study population
Wicks Mitchell New Zealand, 2010
To examine the adolescent cancer experience of place of treatment
Qualitative Descriptive / Psychology
In depth, semi structured interviews
Woodgate Canada, 2006a
As part of a larger study the aim of this article was to detail one of the previous study’s main categories, the degree and type of social support from the perspectives of adolescent participants with cancer As part of a larger study the aim of this article was to detail one of the previous study’s main categories, the degree and type of social support from the perspectives of adolescent participants with cancer Coping experiences of Taiwanese adolescents with cancer
Qualitative Longitudinal / Nursing
Open ended, individual and focus group interviews and participant observation
16-22 years 10 participants Male (n=6) Female (n=4) >20 years n=4 12-18 years 15 participants Male (n=8) Female (n=7)
Paediatric and adult oncology treatment centre or at home University affiliated in patient and out patient paediatric cancer unit
Adolescent experience of symptoms, pain, fatigue and nausea was related to negative affect (p < 0.01). Perceived social support from friends was related to positive affect (p < 0.01). Females reported higher negative affect and lower perceived peer support (p < 0.01)). Population studied was on active treatment. Loss of control and Benefit finding
Symptoms experienced impacted the adolescents sense of self and way of being in the world
Further research is required to confirm the category of social support and its subcategories and attributes
Qualitative Longitudinal / Nursing
Formal and informal interviews and participant observation
41/2 - 18 years 39 participants Male (n=18) Female (n=21) Mean age 10 years
Participant homes, university affiliated inpatient and outpatient paediatric cancer unit
To understand what is was like to experience childhood cancer and its symptoms
Participants varied in age, were interviewed at different points on the treatment continuum and at various sites
Qualitative Phenomenological / Nursing
Open ended interviews
Hospital setting
The experience of coping, losing confidence and rebuilding hope
Small study sample in one locality
Zebrack et al, USA, 2010
To identify aspects of behaviour that may promote or inhibit healthy psychosocial adjustment
Qualitative Descriptive / Social Work
Focus groups – option to attend
12-18 years 10 participants Male (n= 6) Female (n=4) On treatment (n=7) Off treatment (n=3) 18-35 years 17 participants Off treatment (n=17)
Conference Camp for Young Adult Cancer Survivors
Diverse age range and differing time points from completing treatment
Zebrack et al, USA, 2014
To describe medical care or experience with cancer.
Qualitative / Social Work
Open ended survey
Communication with recognition of cognitive and developmental aspects during the illness experience The impact of cancer negative and positive aspects experienced
Woodgate Canada, 2006b
Wu et al, Taiwan, 2009
15-35+ years 523 participants Age at survey >20years n=473
Survey mailed to participants home
Potential for bias due to self selection of participants
Wording may have impacted participant responses
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Author/s, Country, Year
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Fig. 1. Adolescent cancer experience PRISMA Flow Diagram.
articles. These findings were identified on a spreadsheet for further analysis. This was an iterative process comparing each of the itemised content across the studies to identify differences and similarities between the themes about the experience of the adolescent diagnosed with cancer. In the interpretive stage or final step of the analysis, patterns, relationships, differences and similarities of data collected and the frequency of significant findings and themes have been identified. The data has been displayed in a summary table (Table 1) to present relevant findings and themes. Data extracted from the literature, enabled themes to be determined and conclusions to be drawn, which resulted in overarching themes. To ensure rigour expert researchers (AK, PvdR) met regularly to discuss and consider congruence of themes and following consensus, themes were confirmed. The discussion synthesises common themes and weaves them together to focus on core issues and gaps in the literature and identifies areas for future research.
4. Findings Twenty-two relevant papers were reviewed based on inclusion criteria. Seventeen papers contained quotes from participants, other papers used patient feedback and input as data, and one paper was an analysis of an adolescent’s journal three months prior to his death. Another paper analysed the adolescent’s cancer experience through their online illness blogs. Participants shared aspects of their experiences relating to both the positive and negative consequences of a diagnosis of cancer, feeling different to healthy peers and attempting to make sense of the cancer experience. Three overarching themes were identified: (1) Losing what I know - this is what makes me different; (2) Communication and information sharing - the need to know; (3) The importance of friends, peers and relationships.
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4.1. Losing what I know – this is what makes me feel different Several studies expressed the challenges and changes adolescents faced after a diagnosis of cancer and what made the adolescent feel different. The literature indicates they experience an increased number of stressful life changes in comparison with their healthy peers, these included the life changing impact of a cancer diagnosis; the impact of symptoms associated with treatment; and the perception of being different whilst adjusting to a new normal (Cassano, Nagel, & O’Mara, 2008; Fern et al., 2013; Flavelle, 2011; Fochtman, 2011; Keim-Malpass, Stegenga, Loudin, Kennedy, & Kools, 2016; Larouche & Chin-Peuckert, 2006; Mattsson et al., 2007; Ramini et al., 2008; Stegenga & Macpherson, 2014; Stegenga & Ward-Smith, 2009; Wicks & Mitchell, 2010). Findings frequently reported the challenges, changes and losses i.e. normalcy, identity, and control that occurred related to the side effects of treatment and the imposition of adjusting to a diagnosis of cancer (Einberg, Svedberg, Enskär, & Nygren, 2015; Keim-Malpass et al., 2016; Larouche & Chin-Peuckert, 2006; Olsson, Jarfelt, Pergert, & Enskär, 2015; Wallace, Harcourt, Rumsey, & Foot, 2007; Wicks & Mitchell, 2010). In Woodgate (2006a) study adolescents identified they felt they were unable to live their life, as they once knew it, voicing their struggle with autonomy, independence and sexuality. Several studies reported that at this time the adolescent diagnosed with cancer appears to be living and struggling with the duality of living in two worlds, trying to live life normally whilst experiencing a life threatening illness and an uncertain future (Fochtman, 2011, Fern et al., 2013; Fochtman, 2006; Olsson et al., 2015; Stegenga & Macpherson, 2014; Stegenga & Ward-Smith, 2009). The development of one’s sexual identity is a process that occurs during adolescence and perceptions of physical attractiveness and positive self-esteem are key components for developing this identity. Many of the studies reported the desire to be attractive played a key role in developing self-esteem and self-consciousness, including the need to feel accepted by friends and peers (Cassano et al., 2008; Fochtman, 2011; Larouche & Chin-Peuckert, 2006; Mattsson et al., 2007; Wesley, Zelikovsky, & Schwartz, 2013; Woodgate, 2006a) Carlsson et al. (2008) identified the experience of fear in relation to altered body appearance, pain, altered taste and smell sensations, bodily intrusions experienced from procedures, and implications for gender identity related to baldness. Adolescents conveyed feelings of hopelessness when they described the impacts of side effects experienced (Flavelle, 2011; Larouche & Chin-Peuckert, 2006; Olsson et al., 2015; Wesley et al., 2013). In several studies adolescents were overwhelmed with emotions and feelings of shock, disbelief, anger, fear, loss and grief (Carlsson et al., 2008; Einberg et al., 2015; Wicks & Mitchell, 2010). Several authors identified discussions regarding fertility can be confronting as the adolescent’s options may be limited (Fern et al., 2013; Lewis, Jordens, Mooney-Somers, Smith, & Kerridge, 2013; Zebrack, Kent, Keegan, Kato, & Smith, 2014). Their ability and interest in developing interpersonal and intimate relationships was reported, along with the changes that occurred to self and body image during treatment (Flavelle, 2011; Larouche & Chin-Peuckert, 2006; Wallace et al., 2007). These concepts are challenged during treatment because of changes to the adolescent’s physical appearance and feelings of being different (Larouche & Chin-Peuckert, 2006; Olsson et al., 2015; Stegenga & Macpherson, 2014; Wu et al., 2009). Several studies raised the issue of the adolescent expressing the loss of their once normal, happy, healthy life, feeling different, and fear of relapse and dying, hopes and dreams placed on hold resulting in a state of uncertainty (Carlsson et al., 2008; Flavelle, 2011; Keim-Malpass et al., 2016; Wicks & Mitchell, 2010; Wu et al.,
2009). The cancer experience raises issues about dying and mortality, these concerns not usually paramount in an adolescent’s thoughts. Their future now threatened making them different from their healthy peers. School addresses both educational and social agendas for adolescents. The adolescent with cancer experiences school absences that vary from days, to weeks to months, adolescents identified reintegration often resulted in ‘special treatment’ making them feel different and noticed (Lewis et al., 2013) 4.2. Communication and information sharing - the need to know The need for age appropriate, honest information delivered in an individualised and caring manner by healthcare providers was a common theme in papers reviewed (Woodgate, 2006b, Fern et al., 2013; Flavelle, 2011; Mattsson et al., 2007; Olsson et al., 2015; Woodgate, 2006a; Zebrack, Chesler, & Kaplan, 2010, 2014). Participants reported: honesty; tactfulness; sincerity; and sensitivity, as important characteristics the healthcare provider should display when communicating with the adolescent diagnosed with cancer (Fern et al., 2013; Mattsson et al., 2007; Olsson et al., 2015; Wallace et al., 2007). Adolescents often sought information and communication about their disease, treatment, prognosis, potential side effects, and expected impact on their normal life and long-term survivor issues according to their developmental and chronological age (Fern et al., 2013; Flavelle, 2011; Keim-Malpass et al., 2016; Larouche & Chin-Peuckert, 2006; Mattsson et al., 2007; Olsson et al., 2015; Ramini et al., 2008; Stegenga & Macpherson, 2014; Stegenga & Ward-Smith, 2009). Zebrack et al. (2010) recommended asking the adolescent directly what they wanted to know, and to whom this should be communicated; (to parents and / or themselves and in which order). The need for age appropriate information through all stages of the cancer journey also a common theme (Cassano et al., 2008; Fern et al., 2013; Mattsson et al., 2007; Olsson et al., 2015; Stegenga & Ward-Smith, 2009). Social media has been reported to encourage adolescents to actively participate in seeking health information, however, guidance about choosing appropriate sites is warranted (Zebrack et al., 2010). Wallace et al. (2007) recommended health professionals speaking with the adolescent must consider their phase of development, as needs relating to independence and decision-making are constantly changing on their care continuum. Flavelle (2011) reported that adolescents often have the need to know or talk about their pain and symptom management; leaving legacies; and concern for family and friends, as they face the reality of a shortened life expectancy. With the continued growth and availability of social media platforms only two authors discussed journaling and participation in an online illness blogs and how this can assist with expressing feelings, and emotions and sharing experiences with those who face similar challenges (Flavelle, 2011; Keim-Malpass et al., 2016). Keim-Malpass et al. (2016) proposed reviewing online communication allowed researchers to gain further insight into adolescent’s experience with cancer, and allowed for their expression of grief. This was also a way for the adolescent to leave legacies and make meaning of their experience. The concept of time was a common thread throughout the online illness blogs. When confronted by death the adolescent alluded to time to more openly discuss their deeper feelings and experiences (Keim-Malpass et al., 2016). 4.3. The importance of friends, peers and relationships In many of the studies, the development of independence, autonomy and peer group acceptance were important, and a diag-
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nosis of cancer was an interruption to this process (Cassano et al., 2008; Einberg et al., 2015; Fochtman, 2011; Keim-Malpass et al., 2016; Lewis et al., 2013; Wallace et al., 2007; Wesley et al., 2013; Woodgate, 2006a). Einberg et al. (2015) and Cassano et al. (2008) report children and adolescents with cancer want to engage with other children and adolescents with cancer forging relationships with peers who share the experience of cancer. This peer involvement provides opportunities to address concerns such as coping with uncertainty about the future, social exclusion, body image, infertility, and forced dependence on family members (Wallace et al., 2007). Several studies reported the role of peers and the significant effects on the adolescent’s ability to renegotiate their social group (Cassano et al., 2008; Einberg et al., 2015; Flavelle, 2011; Larouche & Chin-Peuckert, 2006; Lewis et al., 2013; Ramini et al., 2008; Wu et al., 2009). Adolescents identified lack of confidence, illness burden and associated self-esteem issues and being self-conscious as interruptions or barriers to establishing or initiating intimate relationships (Woodgate, 2006b, Cassano et al., 2008; Flavelle, 2011; Larouche & Chin-Peuckert, 2006; Woodgate, 2006a). A diagnosis of cancer frequently changes the envisaged life course an adolescent hopes for, and psychological support during the transition phases of diagnosis, treatment and life after cancer are viewed as important for relationship adjustments (Fern et al., 2013; Lewis et al., 2013). Lewis et al. (2013) further suggest that the cancer illness and associated treatment changes relationships between young people, their parents and peers and influences the development and timing of new friends and developing relationships.
5. Discussion This review reveals that during the transition from childhood to adulthood, adolescents have typical concerns about who they are and who they want to be, and their identity development and sexual identity are constantly evolving (Zebrack et al., 2014). During this time, they actively initiate friendships and relationships, are aware of their changing bodies and move towards independence from their parents. Adolescents start to make independent decisions, individualise their style and work towards future goals, which includes life choices about education, career and work opportunities and hopes and dreams for their future (Einberg et al., 2015; Fern et al., 2013; Fochtman, 2011; Olsson et al., 2015; Stegenga & Macpherson, 2014; Stegenga & Ward-Smith, 2009; Wallace et al., 2007). The adolescent diagnosed with cancer, faces additional challenges, as the cancer experience disrupts, weaves and overlaps into their everyday life decisions and activities (Einberg et al., 2015; Mattsson et al., 2007; Stegenga & Ward-Smith, 2009). They may experience overprotective parents who are concerned for their child’s health and fear they may die, and this coincides with the adolescent experiencing the push pull effect of struggling for their independence (Lewis et al., 2013; Ramini et al., 2008). Several authors also suggest the adolescent is often struggling to understand the concept of their illness as they try to make meaning of their cancer experience (Fern et al., 2013; Olsson et al., 2015; Zebrack et al., 2014). Adolescents undergoing cancer treatment constantly straddle the relentless evolving needs of their medical and psychosocial care, live with a fear of relapse and the effects of treatment. They themselves are pulled between uncertainty and grief over the potential and actual losses and the fear associated with the experience of their fight for survival (Carlsson et al., 2008; Keim-Malpass et al., 2016; Ramini et al., 2008; Stegenga & Macpherson, 2014; Wicks & Mitchell, 2010).
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Self-concept or how an adolescent perceives themselves during adolescence is an important priority in their everyday life. Social media platforms (i.e., Facebook, Instagram and Snapchat) and their influence with posts about hair, body image and relationships suggest latest trends and how life should be. However, for the adolescent with cancer these priorities change, and they find themselves living with the fear of recurrence, fear of dying and loss of control, unlike that of their healthy peers (Carlsson et al., 2008; Wicks & Mitchell, 2010). Depending on the age of the adolescent, parents may attempt to withhold certain aspects of information related to cancer treatment or manage medical conversations that shield the adolescent. Age appropriate and open discussions should be encouraged to enable the adolescent to voice their opinion and share their concerns about their treatment plan and participation in clinical trials and research studies. Confidentiality or mutual protection may be a concern for the adolescent, and meetings or time for questions with their doctors without parents may need to be considered. Many papers highlighted the awareness the adolescent had regarding lost life experiences during and after the cancer experience (Cassano et al., 2008; Larouche & Chin-Peuckert, 2006; Mattsson et al., 2007; Wicks & Mitchell, 2010; Woodgate, 2006b; Zebrack et al., 2014), Wallace et al. (2007) however, discuss strength gained from experiencing a life threatening illness and comment about how participants were able to change their focus and thinking by drawing strength from the cancer experience, suggesting strength and confidence to deal with future stressful situations they may encounter in life. Only Flavelle (2011) raises the issue of spirituality and suggests the adolescent when faced with an uncertain future questions their faith, has a greater sense of hope and looks for meaning in religion. The concepts of hope, grief and loss were not widely addressed and only one paper discussed losing confidence and rebuilding hope for adolescents with cancer (Wu et al., 2009). A recent paper by Sawyer et al. (2017) describes the healthcare support service needs of adolescents and young adults with cancer and the association of unmet needs and emotional distress. Bahrami, Namnabati, Mokarian, Oujian, and Arbon, (2017) further support the importance of gradual information sharing based on the individual adolescent’s need. They suggest mental capacity, familial and cultural factors be taken into consideration. This integrative review revealed a gap in the literature about how the younger adolescent (11–15 years) experiences a diagnosis of cancer. It is suggested further research be conducted to listen to their stories enabling care in the paediatric cancer setting be tailored to support them, develop guidelines and improve practices for these vulnerable young people. Medical advancements in cancer care allow this population of adolescents to live longer into adulthood, therefore, it is imperative healthcare providers recognise the changes that are occurring in line with their normal development. Healthcare providers need to consider and respect the unique characteristics of adolescents and continue to provide flexible care across this important developmental period. Not reported in this review was how the adolescent felt about repeated hospitalisations, decisions that are made about their care, involvement in their treatment decisions and consent to clinical trials, the impact of geographic distance from home to their treatment centre. Cultural aspects and spirituality were not addressed.
6. Limitations of the review The authors designed and have identified the literature review process used for this review. A limitation of this review may be
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that studies selected were reported in English only and published from 2005 to 2016; even though specific publication inclusion and data appraisal steps have been identified there is the potential to have missed other relevant publications for this review. Participant’s demographics varied in age, gender and place of residence, thus many studies were not comparable. In some studies participants self-selected depending on how the adolescent was feeling on the day of interview, which may have resulted in more positive or negative accounts of their experiences. Some studies recruited participants whilst they were receiving cancer treatments whilst other studies recruited participants who had relapsed or who had completed treatment, thus offering different perspectives of their experiences. 7. Conclusions This review of the literature, primarily focused on the older adolescent diagnosed with cancer. The review highlighted there is limited research conducted on this topic outside of the USA, one paper only from Australia describing the experience and impact on relationships for the adolescent and young adult aged 16–29 years. These findings highlight the need to know more about the experience and needs of the younger adolescent diagnosed with cancer. Future research would benefit from focusing on the younger adolescent, and how they may be affected by cancer with emphasis on their developing identity, school experiences, social interactions and their developing sexuality. It might also focus on adolescent involvement in decision-making and the impact of a cancer diagnosis on adolescents and their relationships in rural areas. Healthcare providers should be aware of the changing selfperceptions and views about illness and treatment the adolescent experiences throughout the cancer journey. Accessing this information will enable healthcare providers to determine more appropriate care when these adolescents are at their most vulnerable state during their illness trajectory. Author contributions DD: Review Design, Data Collection, Analysis and Results, Draft Manuscript 60%. AK: Review Design and supervision, Peer review of search strategy, Analysis and Results, Manuscript Revision 20%, PvdR: Review Design and supervision, Peer review of analysis and results, Manuscript Review 20%. Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. Ethical statement An ethical statement is not applicable as this publication did not involve human or animal research as it is a review paper. Conflict of interest None. Acknowledgement Debbie Booth at University of Newcastle, provided assistance during database searches.
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The adolescent’s experience of cancer: An integrative literature review Donna Drew ∗ , Ashley Kable, Pamela van der Riet School of Nursing and Midwifery, University of Newcastle, University Drive, Callaghan, New South Wales, 2308, Australia
a r t i c l e
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Article history: Received 27 September 2018 Received in revised form 18 December 2018 Accepted 16 January 2019 Keywords: Adolescent Cancer Experience Literature review
a b s t r a c t Aim: This integrative review appraises the literature that explores the experiences of the adolescent diagnosed with cancer. Background: The cancer experience has an impact on the way the adolescent lives their life, their future hopes dreams and fears, their health and wellbeing. Healthcare professionals require an understanding of what the adolescent experiences after a diagnosis of cancer and during the treatment experience to be able to provide optimal age appropriate care. Methods: The review was conducted following Whittemore and Knafl’s (2005) framework. A comprehensive search using the following four databases, CINAHL, MEDLINE, PyschINFO, Embase was undertaken for the period of 2005–2016. Google scholar, healthcare policies and guidelines reference lists were also searched. Screening and appraisal of 911 articles resulted in 22 articles being included in this review. Findings: Three themes were identified: ‘Losing what I know - this is what makes me different’, ‘Communication and information sharing - the need to know’, and ‘The importance of friends, peers and relationships’. Conclusion: This review reports that healthcare providers should be aware of the changing selfperceptions the adolescent experiences throughout the cancer journey. Accessing this information will enable healthcare providers to determine more appropriate care when these adolescents are feeling most vulnerable. The review identified there is limited information about the experience of the younger adolescent (11–15 years) with cancer. Future research may benefit from focusing on the stage of development of the adolescent with cancer. © 2019 Australian College of Nursing Ltd. Published by Elsevier Ltd.
Summary of relevance Problem Healthcare providers need to be aware of the changing selfperceptions the adolescent experiences throughout the cancer journey. There is limited information about the experience of the younger adolescent (11–15 years) diagnosed with cancer. What is already known Adolescents with cancer have unique healthcare needs that affect their quality of life, their long-term health, their ability to engage socially, and attend school. Currently dedicated Adolescent and Young Adult (AYA) cancer services offer care to adolescents and young adults aged from 15 years to 25 years. To date, there is limited research on the experience of the younger adolescent (11–15 years) diagnosed with cancer.
∗ Corresponding author. E-mail addresses: [email protected] (D. Drew), [email protected] (A. Kable), [email protected] (P. van der Riet). https://doi.org/10.1016/j.colegn.2019.01.002 1322-7696/© 2019 Australian College of Nursing Ltd. Published by Elsevier Ltd.
What this paper adds This review highlights cancer related issues for the older adolescent. Future research would benefit from focusing on the younger adolescent (11–15 years) with cancer, with emphasis on how a cancer diagnosis impacts the younger adolescent’s developing identity, sexuality, and social interactions, and engagement with social media, particularly for adolescents in rural and remote areas.
1. Introduction Adolescence is referred to as a transitional phase of growth and development between childhood and adulthood. Adolescence can be divided into three stages; Early Adolescence 11–14 years, Middle Adolescence 15–17 years and Late Adolescence 18–20 years (Bashe, 2003). A diagnosis of cancer during adolescence is an interruption to the developmental tasks of adolescence and has the potential to challenge the initiation and evolving of peer relationships and positive body image. Loss of control, powerlessness and fatigue, reported as treatment related issues contributing to this
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interruption (Fochtman, 2011; Wu, Chin, Haase, & Chen, 2009). Adolescents with cancer are emerging as a distinct group of patients from the paediatric and adult cancer population. Developing an understanding of the cancer experience with consideration of the developmental capabilities of the adolescent is essential for healthcare providers to be able to offer comprehensive and sensitive care. Adolescents today experience life very differently to previous generations. Technology, advertising, social media platforms, changing family patterns and education opportunities create a different set of pressures and experiences for the adolescent. Kim, White, and Patterson, (2016) suggest adolescents experience significant challenges due to a cancer diagnosis alongside their unique developmental needs and their need for relevant information and support. The cancer experience has an impact on the way the adolescent lives their life, their future hopes, dreams and fears, and their health and wellbeing (Carlsson, Kihlgren, & Sørlie, 2008; Mattsson, Ringner, Ljungman, & von Essen, 2007; Ramini, Brown, & Buckner, 2008; Stegenga & Macpherson, 2014). The aim of this review was to critically appraise the literature and to explore the experiences of the adolescent diagnosed with cancer.
2. Aim To critically appraise the literature that explores experiences of the adolescent diagnosed with cancer.
3. Methods This review uses Whittemore and Knafl’s (2005) process, in conducting an integrative review. An integrative review was chosen because it summarises and critiques a specific research topic by analysing previously conducted research studies and incorporates both qualitative and quantitative studies. Information gained is more comprehensive and will assist in contributing to improving care and clinical practice standards whilst identifying gaps requiring further research. 3.1. Literature search strategy A search of the literature was undertaken using the (Kable, Pich, & Maslin-Prothero, 2012) 12 step framework for documenting a search strategy, prior to critiquing and synthesising the retrieved literature. A search was conducted using the following databases: CINAHL, MEDLINE, PyschINFO and Embase, to locate peer reviewed articles. References from identified papers were screened to find additional papers that did not appear during the original literature search. Google scholar, and reference lists of relevant healthcare policies and guidelines were also searched. The search was limited to research related to humans and published in English between January 2005 and December 2016. Prior to 2005 there were few published studies that primarily focused on the adolescent’s experience of cancer. The following terms and Boolean operators AND/OR were used (‘Adolescent’, or ‘youth’, or ‘young people’, or ‘teenagers’, or ‘AYA (adolescent young adult)’), and (‘cancer’, or ‘oncology’), and (‘illness experience’, or ‘life experience’, or life change events’). The search terms used were directly related to the purpose of the review and were found in the article title, abstract or discussion sections of the articles. Search terms were tested to effectively identify types of articles that met the inclusion criteria. The authors undertook this step prior to conducting the search in all search engines to determine terms that did not locate relevant literature.
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3.1.1. Inclusion criteria The following inclusion criteria were applied: 1 Peer reviewed original research, and patient journals and blogs that reported findings about the adolescent diagnosed with cancer or referred to their experience of cancer (If previous systematic and literature reviews were located they were considered as valuable background resources if their purpose or aim was relevant to the topic of the review). Publications that were not original research were excluded because this review sought to determine the evidence to inform future research. 2 The study population included adolescent participants (11–20 years) or discrete groups of adolescents. 3.1.2. Exclusion criteria The following exclusion criteria were applied: 1 If they did not include any participants between the 12–17 years of age. 2 Systematic or literature reviews, commentaries, discussion papers, editorials. 3 If the experience reported was not about adolescents with cancer. 4 Papers written in a language other than English 3.2. Data evaluation The search of databases and search engines retrieved 911 articles and after duplicates were removed, 794 articles remained. Following screening for relevance, 718 articles were excluded and 76 articles remained. These articles were assessed for eligibility and determined to meet inclusion criteria if they reported the experience of the adolescent diagnosed with cancer. Articles retrieved, screened and critically appraised are presented in a PRISMA flowchart (Fig. 1), (Moher, Liberati, Tetzlaff, & Altman, 2009). Twenty-nine articles were critically appraised using the Critical Appraisal Skills Program (CASP) checklist for qualitative research (Critical Appraisal Skills Program, 2017) and the McMaster Critical Review Form, Quantitative Studies (Law et al., 1998) for reporting observational studies. The reasons for excluding seven studies after using the CASP checklist included: conference abstract, editorial, insufficient explanation of research design and participant selection, need for a support group, parent and sibling focus and adult focus. Twenty-two articles have been included in this review. Qualitative designs were used in 21 articles and one used a quantitative design. Studies included were conducted in Sweden (4); Canada (5); United Kingdom (2); United States of America (8); Australia (1); New Zealand (1); Taiwan (1). Sample sizes ranged from 1 to 296 participants. The study settings were: paediatric inpatient, outpatient treatment centres; adult treatment centres; participant’s homes; telephone calls; conference workshops; mailout survey and review of illness blogs. Data collection methods included open-ended semi structured interviews, focus group interviews, open ended survey and field observation notes. Participant ages ranged from 4.5 to 35 years, and 77% of studies focused on adolescents 13–35 years. Varying time frames along the illness trajectory were included and ranged from three months from diagnosis up to five years after completing treatment. Geographic locations included both urban and regional locations. 3.3. Data analysis The authors used a consistent data analysis approach for all papers, and this comprised the following steps. Data analysis commenced with a logical reduction (Whittemore & Knafl, 2005), then reduced by identifying the adolescent’s experience of cancer in the
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Table 1 Summary of articles. Study aim
Study Design /Discipline
Data Collection Method
Participant age, Number of participants, Gender
Setting
Summary of relevant findings / themes
Limitations
Carlsson et al., Sweden, 2008
To illuminate fear in adolescents with personal experience of cancer
Qualitative Phenomenological
Open ended interviews
14-16 years, 6 participants Female (n=6) Off treatment (n=6)
Paediatric oncology outpatient setting
The experience of fear related to a diagnosis of cancer and threat to personal self
Cassano et al., Canada, 2008
To explore and describe adolescent’s perceptions of a teen support group
Qualitative Descriptive / Social Work
Focus group, interviews, field observation notes
14-20 years, 11 participants Male (n=6) Female (n=5) On treatment (n=4) Off treatment (n=7)
Paediatric oncology treatment centre
Feeling normal and sharing experiences in a group setting
Einberg et al., Sweden, 2015
To describe perceptions of friendship during cancer treatment
Qualitative Descriptive / Nursing
Focus Groups
Paediatric oncology treatment centre, Local library, Conference room local hotel
Promoting friendships, feeling normal, maintaining contact and social interactions with peers
Fern et al., England, 2013
To understand the cancer experience for teenagers and young adults and to expand on previous conceptual models
Qualitative Participatory / Action research
Semi-structured peer to peer interviews, workshop
8-12 years, 15 participants Male (n=10) Female (n=5) Participants were on and off treatment <12 yrs n=11 13-25 years 11 participants Male (n=5) Female (n=6) Off treatment (n=11) >20 years n=8
Varied interpretations of the word fear. Participant attitudes dictated responses. The authors comment on the number of participants as being a limitation Participation depended on how the patient was feeling on the day. Some group members may have felt more comfortable than others to speak Developmental differences of interactions of 8 and 12 year old patients
Workshop
Life changing impact of diagnosis, information giving, place of care, role of health professionals, coping, psychological support, life after cancer
Flavelle Canada, 2011
To analyse a 90 page journal and identify key themes
Qualitative Phenomenology
Analysis of a 90 day journal
15 years 1 participant Male (n=1) Three months prior to his death
Participant’s home
Adolescent development, the escape from illness, changing symptoms, spirituality, relationships
Fochtman, USA, 2011
To describe the meanings of the lived experience for the adolescent during cancer treatment
Qualitative Phenomenology / Nursing
13-19 years 7participants Male (n=6) Female (n=1) On treatment (n=7)
Paediatric oncology treatment centre, and participant’s home
Holistic support during the illness trajectory, interdisciplinary care, social support school integration
Keim-Malpass et al, USA, 2016
To understand how adolescent’s experience cancer progression and the use of illness blogs
Qualitative Descriptive / Nursing
Interviews if required a second interview was conducted to expand on information from first interview and validate findings Text data from online blogs was reviewed
13-18 years 7 participants
Review of illness blogs
Normalising bad news given, the impact of disease progression, the concept of time
Larouche, Chin-Peuckert, Canada, 2006
To explore perception of body image and the impact of this perception on everyday life
Qualitative Descriptive / Nursing
Semi structured interviews, two interviews per patient,
14-17 years 5 participants Male (n=3) Female (n=2) On treatment (n=5)
Oncology treatment centre
Adolescent perception of being different, importance of peers whilst adjusting to a new normal
Focus was from the perspective of the cancer survivor, relapse and end of life care not reflected. The authors comment on the number of participants as being a limitation. Analysis of one journal and one adolescent’s experience, the publication of these journals is uncommon Female experience not represented Participants resided in differing geographical locations
Participants who took part may not share the same experiences as the adolescent who is digitally savvy or who does not blog or have access to various online platforms. Small number of participants only those willing participated
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Author/s, Country, Year
Table 1 (Continued) Study aim
Study Design /Discipline
Data Collection Method
Participant age, Number of participants, Gender
Setting
Summary of relevant findings / themes
Limitations
Lewis et al, Australia, 2013
To explore the experience of cancer and how it affects relationships.
Qualitative Descriptive
16-29 years 27 participants Male (n=12) Female (n=15) Off treatment (n=27)
University of Sydney offices, family home or telephone
The impact of cancer care and shift in relational priorities during adolescence and young adulthood
Trustworthiness and rigor are not discussed
Mattsson et al, Sweden, 2007
To explore negative and positive consequences of cancer during adolescence, experienced two years after diagnosis To identify aspects of care and needs of teenagers and young adults diagnosed with cancer
Qualitative Longitudinal
Participants could engage in 1,2 or 3 interviews, An opportunity was offered to work with an artist to create a self-portrait of their experience with cancer. Semi structured interviews
Three Swedish paediatric oncology treatment centres
The impact of cancer knowledge, positive and negative consequences related to care
Part of a larger study with unequal numbers of on and off treatment participants
Qualitative
Focus group interviews
Identify adaptive strategies adolescents with cancer use.
Roy’s Adaptive Model / Nursing
Structured interviews
Five adult oncology treatment centres and two paediatric oncology treatment centres Haematology/ Oncology treatment centre
Identifying and meeting the unique care needs of teenagers and young adults diagnosed with cancer
Ramini et al, USA, 2008
Groups were mixed in gender and age, which may have influenced discussions around sensitive topics. Small sample size and age range of respondents
Stegenga Macpherson USA, 2014
To explore and describe themes common to adolescents with cancer
Qualitative Longitudinal Descriptive / Nursing
Stegenga Macpherson USA, 2009
To explore the lived experience of being diagnosed with cancer from the perspective of the adolescent To identify and explore appearance related concerns relating to the experience of cancer and their psychosocial impact
Qualitative, Phenomenological
In depth interviews within first two months after diagnosis, then quarterly thereafter for the first year Semi structured interviews within the 4 to 6 months of being diagnosed with cancer
15-21 years 38 participants Male (n=22) Female (n=16) On treatment (n= 9) Off treatment (n= 29) 15-31 years 44 participants Male (n=16) Female (n=28) Off treatment (n=44) >20 years n=23 16-25 years 4 participants Male (n=1) Female (n=3) Off treatment (n=4) Mean age 21 years 12-17 years 15 participants Male (n=5) Female (n=10)
13-17 years 10 participants Male (n=1) Female (n=9) On treatment (n=10)
Paediatric oncology treatment centre or over the phone
Information to increase knowledge base and coping skills
One perspective of the cancer experience, initial diagnosis.
14 -19 years 6 participants Female (n=6)
Participant’s home
The ongoing impact of appearance changes, holding onto being normal, the meaning of cancer on completing treatment, finding the positive and increased appreciation, healthcare provision
Males not included due to their age and maturity. Recruitment staff did not include those they considered vulnerable, and who did not consider appearance to be important. Time from completing treatment may have influenced findings
Olsson et al, Sweden, 2015
Wallace et al, United Kingdom, 2007
Qualitative Interpretive Phenomenological
Semi structured interviews with adolescents who completed treatment in the previous two years
Paediatric oncology treatment centre or over the phone
Coping behaviours related to four adaptive modes physiological, self concept role function and Interdependence The adolescent identity develops over time, a diagnosis of cancer requires integration of the two.
Interviews missed due to scheduling and time point from diagnosis
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Author/s, Country, Year
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Table 1 (Continued) Study aim
Study Design /Discipline
Data Collection Method
Participant age, Number of participants, Gender
Setting
Summary of relevant findings / themes
Limitations
Wesley et al, USA, 2013
To determine the relationships between physical symptoms, perceived social support and affect and to test the role of perceived social support as a moderator of the relationship between physical symptoms and affect
Quantitative Observational Study
Questionnaire packages, demographic, physical symptoms, perceived social support, positive and negative affect, stressful life events and family functioning scales were used to measure patient experiences
13-19 years, 133 potential participants, 123 agreed to participate Complete data 102 77% participant response
Inpatient and outpatient children’s hospital
The study used a range of validated instruments to measure physical symptoms, perceived social support, positive and negative affect, stressful life events and family functioning. Study sample was not representative of study population
Wicks Mitchell New Zealand, 2010
To examine the adolescent cancer experience of place of treatment
Qualitative Descriptive / Psychology
In depth, semi structured interviews
Woodgate Canada, 2006a
As part of a larger study the aim of this article was to detail one of the previous study’s main categories, the degree and type of social support from the perspectives of adolescent participants with cancer As part of a larger study the aim of this article was to detail one of the previous study’s main categories, the degree and type of social support from the perspectives of adolescent participants with cancer Coping experiences of Taiwanese adolescents with cancer
Qualitative Longitudinal / Nursing
Open ended, individual and focus group interviews and participant observation
16-22 years 10 participants Male (n=6) Female (n=4) >20 years n=4 12-18 years 15 participants Male (n=8) Female (n=7)
Paediatric and adult oncology treatment centre or at home University affiliated in patient and out patient paediatric cancer unit
Adolescent experience of symptoms, pain, fatigue and nausea was related to negative affect (p < 0.01). Perceived social support from friends was related to positive affect (p < 0.01). Females reported higher negative affect and lower perceived peer support (p < 0.01)). Population studied was on active treatment. Loss of control and Benefit finding
Symptoms experienced impacted the adolescents sense of self and way of being in the world
Further research is required to confirm the category of social support and its subcategories and attributes
Qualitative Longitudinal / Nursing
Formal and informal interviews and participant observation
41/2 - 18 years 39 participants Male (n=18) Female (n=21) Mean age 10 years
Participant homes, university affiliated inpatient and outpatient paediatric cancer unit
To understand what is was like to experience childhood cancer and its symptoms
Participants varied in age, were interviewed at different points on the treatment continuum and at various sites
Qualitative Phenomenological / Nursing
Open ended interviews
Hospital setting
The experience of coping, losing confidence and rebuilding hope
Small study sample in one locality
Zebrack et al, USA, 2010
To identify aspects of behaviour that may promote or inhibit healthy psychosocial adjustment
Qualitative Descriptive / Social Work
Focus groups – option to attend
12-18 years 10 participants Male (n= 6) Female (n=4) On treatment (n=7) Off treatment (n=3) 18-35 years 17 participants Off treatment (n=17)
Conference Camp for Young Adult Cancer Survivors
Diverse age range and differing time points from completing treatment
Zebrack et al, USA, 2014
To describe medical care or experience with cancer.
Qualitative / Social Work
Open ended survey
Communication with recognition of cognitive and developmental aspects during the illness experience The impact of cancer negative and positive aspects experienced
Woodgate Canada, 2006b
Wu et al, Taiwan, 2009
15-35+ years 523 participants Age at survey >20years n=473
Survey mailed to participants home
Potential for bias due to self selection of participants
Wording may have impacted participant responses
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Author/s, Country, Year
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Fig. 1. Adolescent cancer experience PRISMA Flow Diagram.
articles. These findings were identified on a spreadsheet for further analysis. This was an iterative process comparing each of the itemised content across the studies to identify differences and similarities between the themes about the experience of the adolescent diagnosed with cancer. In the interpretive stage or final step of the analysis, patterns, relationships, differences and similarities of data collected and the frequency of significant findings and themes have been identified. The data has been displayed in a summary table (Table 1) to present relevant findings and themes. Data extracted from the literature, enabled themes to be determined and conclusions to be drawn, which resulted in overarching themes. To ensure rigour expert researchers (AK, PvdR) met regularly to discuss and consider congruence of themes and following consensus, themes were confirmed. The discussion synthesises common themes and weaves them together to focus on core issues and gaps in the literature and identifies areas for future research.
4. Findings Twenty-two relevant papers were reviewed based on inclusion criteria. Seventeen papers contained quotes from participants, other papers used patient feedback and input as data, and one paper was an analysis of an adolescent’s journal three months prior to his death. Another paper analysed the adolescent’s cancer experience through their online illness blogs. Participants shared aspects of their experiences relating to both the positive and negative consequences of a diagnosis of cancer, feeling different to healthy peers and attempting to make sense of the cancer experience. Three overarching themes were identified: (1) Losing what I know - this is what makes me different; (2) Communication and information sharing - the need to know; (3) The importance of friends, peers and relationships.
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4.1. Losing what I know – this is what makes me feel different Several studies expressed the challenges and changes adolescents faced after a diagnosis of cancer and what made the adolescent feel different. The literature indicates they experience an increased number of stressful life changes in comparison with their healthy peers, these included the life changing impact of a cancer diagnosis; the impact of symptoms associated with treatment; and the perception of being different whilst adjusting to a new normal (Cassano, Nagel, & O’Mara, 2008; Fern et al., 2013; Flavelle, 2011; Fochtman, 2011; Keim-Malpass, Stegenga, Loudin, Kennedy, & Kools, 2016; Larouche & Chin-Peuckert, 2006; Mattsson et al., 2007; Ramini et al., 2008; Stegenga & Macpherson, 2014; Stegenga & Ward-Smith, 2009; Wicks & Mitchell, 2010). Findings frequently reported the challenges, changes and losses i.e. normalcy, identity, and control that occurred related to the side effects of treatment and the imposition of adjusting to a diagnosis of cancer (Einberg, Svedberg, Enskär, & Nygren, 2015; Keim-Malpass et al., 2016; Larouche & Chin-Peuckert, 2006; Olsson, Jarfelt, Pergert, & Enskär, 2015; Wallace, Harcourt, Rumsey, & Foot, 2007; Wicks & Mitchell, 2010). In Woodgate (2006a) study adolescents identified they felt they were unable to live their life, as they once knew it, voicing their struggle with autonomy, independence and sexuality. Several studies reported that at this time the adolescent diagnosed with cancer appears to be living and struggling with the duality of living in two worlds, trying to live life normally whilst experiencing a life threatening illness and an uncertain future (Fochtman, 2011, Fern et al., 2013; Fochtman, 2006; Olsson et al., 2015; Stegenga & Macpherson, 2014; Stegenga & Ward-Smith, 2009). The development of one’s sexual identity is a process that occurs during adolescence and perceptions of physical attractiveness and positive self-esteem are key components for developing this identity. Many of the studies reported the desire to be attractive played a key role in developing self-esteem and self-consciousness, including the need to feel accepted by friends and peers (Cassano et al., 2008; Fochtman, 2011; Larouche & Chin-Peuckert, 2006; Mattsson et al., 2007; Wesley, Zelikovsky, & Schwartz, 2013; Woodgate, 2006a) Carlsson et al. (2008) identified the experience of fear in relation to altered body appearance, pain, altered taste and smell sensations, bodily intrusions experienced from procedures, and implications for gender identity related to baldness. Adolescents conveyed feelings of hopelessness when they described the impacts of side effects experienced (Flavelle, 2011; Larouche & Chin-Peuckert, 2006; Olsson et al., 2015; Wesley et al., 2013). In several studies adolescents were overwhelmed with emotions and feelings of shock, disbelief, anger, fear, loss and grief (Carlsson et al., 2008; Einberg et al., 2015; Wicks & Mitchell, 2010). Several authors identified discussions regarding fertility can be confronting as the adolescent’s options may be limited (Fern et al., 2013; Lewis, Jordens, Mooney-Somers, Smith, & Kerridge, 2013; Zebrack, Kent, Keegan, Kato, & Smith, 2014). Their ability and interest in developing interpersonal and intimate relationships was reported, along with the changes that occurred to self and body image during treatment (Flavelle, 2011; Larouche & Chin-Peuckert, 2006; Wallace et al., 2007). These concepts are challenged during treatment because of changes to the adolescent’s physical appearance and feelings of being different (Larouche & Chin-Peuckert, 2006; Olsson et al., 2015; Stegenga & Macpherson, 2014; Wu et al., 2009). Several studies raised the issue of the adolescent expressing the loss of their once normal, happy, healthy life, feeling different, and fear of relapse and dying, hopes and dreams placed on hold resulting in a state of uncertainty (Carlsson et al., 2008; Flavelle, 2011; Keim-Malpass et al., 2016; Wicks & Mitchell, 2010; Wu et al.,
2009). The cancer experience raises issues about dying and mortality, these concerns not usually paramount in an adolescent’s thoughts. Their future now threatened making them different from their healthy peers. School addresses both educational and social agendas for adolescents. The adolescent with cancer experiences school absences that vary from days, to weeks to months, adolescents identified reintegration often resulted in ‘special treatment’ making them feel different and noticed (Lewis et al., 2013) 4.2. Communication and information sharing - the need to know The need for age appropriate, honest information delivered in an individualised and caring manner by healthcare providers was a common theme in papers reviewed (Woodgate, 2006b, Fern et al., 2013; Flavelle, 2011; Mattsson et al., 2007; Olsson et al., 2015; Woodgate, 2006a; Zebrack, Chesler, & Kaplan, 2010, 2014). Participants reported: honesty; tactfulness; sincerity; and sensitivity, as important characteristics the healthcare provider should display when communicating with the adolescent diagnosed with cancer (Fern et al., 2013; Mattsson et al., 2007; Olsson et al., 2015; Wallace et al., 2007). Adolescents often sought information and communication about their disease, treatment, prognosis, potential side effects, and expected impact on their normal life and long-term survivor issues according to their developmental and chronological age (Fern et al., 2013; Flavelle, 2011; Keim-Malpass et al., 2016; Larouche & Chin-Peuckert, 2006; Mattsson et al., 2007; Olsson et al., 2015; Ramini et al., 2008; Stegenga & Macpherson, 2014; Stegenga & Ward-Smith, 2009). Zebrack et al. (2010) recommended asking the adolescent directly what they wanted to know, and to whom this should be communicated; (to parents and / or themselves and in which order). The need for age appropriate information through all stages of the cancer journey also a common theme (Cassano et al., 2008; Fern et al., 2013; Mattsson et al., 2007; Olsson et al., 2015; Stegenga & Ward-Smith, 2009). Social media has been reported to encourage adolescents to actively participate in seeking health information, however, guidance about choosing appropriate sites is warranted (Zebrack et al., 2010). Wallace et al. (2007) recommended health professionals speaking with the adolescent must consider their phase of development, as needs relating to independence and decision-making are constantly changing on their care continuum. Flavelle (2011) reported that adolescents often have the need to know or talk about their pain and symptom management; leaving legacies; and concern for family and friends, as they face the reality of a shortened life expectancy. With the continued growth and availability of social media platforms only two authors discussed journaling and participation in an online illness blogs and how this can assist with expressing feelings, and emotions and sharing experiences with those who face similar challenges (Flavelle, 2011; Keim-Malpass et al., 2016). Keim-Malpass et al. (2016) proposed reviewing online communication allowed researchers to gain further insight into adolescent’s experience with cancer, and allowed for their expression of grief. This was also a way for the adolescent to leave legacies and make meaning of their experience. The concept of time was a common thread throughout the online illness blogs. When confronted by death the adolescent alluded to time to more openly discuss their deeper feelings and experiences (Keim-Malpass et al., 2016). 4.3. The importance of friends, peers and relationships In many of the studies, the development of independence, autonomy and peer group acceptance were important, and a diag-
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nosis of cancer was an interruption to this process (Cassano et al., 2008; Einberg et al., 2015; Fochtman, 2011; Keim-Malpass et al., 2016; Lewis et al., 2013; Wallace et al., 2007; Wesley et al., 2013; Woodgate, 2006a). Einberg et al. (2015) and Cassano et al. (2008) report children and adolescents with cancer want to engage with other children and adolescents with cancer forging relationships with peers who share the experience of cancer. This peer involvement provides opportunities to address concerns such as coping with uncertainty about the future, social exclusion, body image, infertility, and forced dependence on family members (Wallace et al., 2007). Several studies reported the role of peers and the significant effects on the adolescent’s ability to renegotiate their social group (Cassano et al., 2008; Einberg et al., 2015; Flavelle, 2011; Larouche & Chin-Peuckert, 2006; Lewis et al., 2013; Ramini et al., 2008; Wu et al., 2009). Adolescents identified lack of confidence, illness burden and associated self-esteem issues and being self-conscious as interruptions or barriers to establishing or initiating intimate relationships (Woodgate, 2006b, Cassano et al., 2008; Flavelle, 2011; Larouche & Chin-Peuckert, 2006; Woodgate, 2006a). A diagnosis of cancer frequently changes the envisaged life course an adolescent hopes for, and psychological support during the transition phases of diagnosis, treatment and life after cancer are viewed as important for relationship adjustments (Fern et al., 2013; Lewis et al., 2013). Lewis et al. (2013) further suggest that the cancer illness and associated treatment changes relationships between young people, their parents and peers and influences the development and timing of new friends and developing relationships.
5. Discussion This review reveals that during the transition from childhood to adulthood, adolescents have typical concerns about who they are and who they want to be, and their identity development and sexual identity are constantly evolving (Zebrack et al., 2014). During this time, they actively initiate friendships and relationships, are aware of their changing bodies and move towards independence from their parents. Adolescents start to make independent decisions, individualise their style and work towards future goals, which includes life choices about education, career and work opportunities and hopes and dreams for their future (Einberg et al., 2015; Fern et al., 2013; Fochtman, 2011; Olsson et al., 2015; Stegenga & Macpherson, 2014; Stegenga & Ward-Smith, 2009; Wallace et al., 2007). The adolescent diagnosed with cancer, faces additional challenges, as the cancer experience disrupts, weaves and overlaps into their everyday life decisions and activities (Einberg et al., 2015; Mattsson et al., 2007; Stegenga & Ward-Smith, 2009). They may experience overprotective parents who are concerned for their child’s health and fear they may die, and this coincides with the adolescent experiencing the push pull effect of struggling for their independence (Lewis et al., 2013; Ramini et al., 2008). Several authors also suggest the adolescent is often struggling to understand the concept of their illness as they try to make meaning of their cancer experience (Fern et al., 2013; Olsson et al., 2015; Zebrack et al., 2014). Adolescents undergoing cancer treatment constantly straddle the relentless evolving needs of their medical and psychosocial care, live with a fear of relapse and the effects of treatment. They themselves are pulled between uncertainty and grief over the potential and actual losses and the fear associated with the experience of their fight for survival (Carlsson et al., 2008; Keim-Malpass et al., 2016; Ramini et al., 2008; Stegenga & Macpherson, 2014; Wicks & Mitchell, 2010).
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Self-concept or how an adolescent perceives themselves during adolescence is an important priority in their everyday life. Social media platforms (i.e., Facebook, Instagram and Snapchat) and their influence with posts about hair, body image and relationships suggest latest trends and how life should be. However, for the adolescent with cancer these priorities change, and they find themselves living with the fear of recurrence, fear of dying and loss of control, unlike that of their healthy peers (Carlsson et al., 2008; Wicks & Mitchell, 2010). Depending on the age of the adolescent, parents may attempt to withhold certain aspects of information related to cancer treatment or manage medical conversations that shield the adolescent. Age appropriate and open discussions should be encouraged to enable the adolescent to voice their opinion and share their concerns about their treatment plan and participation in clinical trials and research studies. Confidentiality or mutual protection may be a concern for the adolescent, and meetings or time for questions with their doctors without parents may need to be considered. Many papers highlighted the awareness the adolescent had regarding lost life experiences during and after the cancer experience (Cassano et al., 2008; Larouche & Chin-Peuckert, 2006; Mattsson et al., 2007; Wicks & Mitchell, 2010; Woodgate, 2006b; Zebrack et al., 2014), Wallace et al. (2007) however, discuss strength gained from experiencing a life threatening illness and comment about how participants were able to change their focus and thinking by drawing strength from the cancer experience, suggesting strength and confidence to deal with future stressful situations they may encounter in life. Only Flavelle (2011) raises the issue of spirituality and suggests the adolescent when faced with an uncertain future questions their faith, has a greater sense of hope and looks for meaning in religion. The concepts of hope, grief and loss were not widely addressed and only one paper discussed losing confidence and rebuilding hope for adolescents with cancer (Wu et al., 2009). A recent paper by Sawyer et al. (2017) describes the healthcare support service needs of adolescents and young adults with cancer and the association of unmet needs and emotional distress. Bahrami, Namnabati, Mokarian, Oujian, and Arbon, (2017) further support the importance of gradual information sharing based on the individual adolescent’s need. They suggest mental capacity, familial and cultural factors be taken into consideration. This integrative review revealed a gap in the literature about how the younger adolescent (11–15 years) experiences a diagnosis of cancer. It is suggested further research be conducted to listen to their stories enabling care in the paediatric cancer setting be tailored to support them, develop guidelines and improve practices for these vulnerable young people. Medical advancements in cancer care allow this population of adolescents to live longer into adulthood, therefore, it is imperative healthcare providers recognise the changes that are occurring in line with their normal development. Healthcare providers need to consider and respect the unique characteristics of adolescents and continue to provide flexible care across this important developmental period. Not reported in this review was how the adolescent felt about repeated hospitalisations, decisions that are made about their care, involvement in their treatment decisions and consent to clinical trials, the impact of geographic distance from home to their treatment centre. Cultural aspects and spirituality were not addressed.
6. Limitations of the review The authors designed and have identified the literature review process used for this review. A limitation of this review may be
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that studies selected were reported in English only and published from 2005 to 2016; even though specific publication inclusion and data appraisal steps have been identified there is the potential to have missed other relevant publications for this review. Participant’s demographics varied in age, gender and place of residence, thus many studies were not comparable. In some studies participants self-selected depending on how the adolescent was feeling on the day of interview, which may have resulted in more positive or negative accounts of their experiences. Some studies recruited participants whilst they were receiving cancer treatments whilst other studies recruited participants who had relapsed or who had completed treatment, thus offering different perspectives of their experiences. 7. Conclusions This review of the literature, primarily focused on the older adolescent diagnosed with cancer. The review highlighted there is limited research conducted on this topic outside of the USA, one paper only from Australia describing the experience and impact on relationships for the adolescent and young adult aged 16–29 years. These findings highlight the need to know more about the experience and needs of the younger adolescent diagnosed with cancer. Future research would benefit from focusing on the younger adolescent, and how they may be affected by cancer with emphasis on their developing identity, school experiences, social interactions and their developing sexuality. It might also focus on adolescent involvement in decision-making and the impact of a cancer diagnosis on adolescents and their relationships in rural areas. Healthcare providers should be aware of the changing selfperceptions and views about illness and treatment the adolescent experiences throughout the cancer journey. Accessing this information will enable healthcare providers to determine more appropriate care when these adolescents are at their most vulnerable state during their illness trajectory. Author contributions DD: Review Design, Data Collection, Analysis and Results, Draft Manuscript 60%. AK: Review Design and supervision, Peer review of search strategy, Analysis and Results, Manuscript Revision 20%, PvdR: Review Design and supervision, Peer review of analysis and results, Manuscript Review 20%. Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. Ethical statement An ethical statement is not applicable as this publication did not involve human or animal research as it is a review paper. Conflict of interest None. Acknowledgement Debbie Booth at University of Newcastle, provided assistance during database searches.
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