Abstract
Cancer diagnosis and treatments negatively affect quality of life and developmental processes of adolescents and young adults (AYAs), with self-esteem, self-efficacy, and body image discomfort reported. Despite increasing awareness of the psychosocial issues experienced by this group, a paucity of psychosocial interventions has been developed. This study aims to investigate the Framed Portrait Experience (FPE) as an intervention to promote well-being among AYA cancer survivors. A pilot study was conducted using a quasi-experimental design. The sample included 18 AYA leukemia survivors. Individuals in the intervention group (n = 10) participated in the FPE, a psychosocial program consisting of two sessions. In the first one, starting from the illness narrative recollected by the individual, pictures representing the subject in meaningful contexts are taken. Then, a selected number of pictures are used in a second encounter with a therapist to integrate the disease within past, present, and future of the participant. Survivors in the comparison group (n = 8) were offered usual psychosocial care at the participating institute. Measures of personality traits, coping, self-efficacy, self-esteem, and body image were compared at pre-test and 3 months later. Significant differences in self-efficacy and self-esteem scores were identified at post-test between the intervention and comparison group (p < 0.05). No significant differences were identified for body self-esteem. These findings provide initial evidence supporting the FPE as a low-cost and easy-to-implement intervention to promote self-efficacy and self-esteem among AYA survivors. Further research with larger samples, with more rigorous designs, and different cancer types is needed.
Introduction
Adolescents and young adults (AYAs) with cancer experience unique medical and psychosocial needs, 1 which often lead to reduced adherence to treatment 2 and whose long-term effects extend years beyond the end of active treatment.3,4 Despite increasing attention to the health-related quality of life issues faced by AYAs, the well-established long-term negative impact of the disease on psychological and social well-being, coupled with the rates of unmet informational needs, results from three recent reviews highlighted that only a limited number of interventions are currently reported in the literature.5–7
Not only there is a paucity of programs developed to address psychosocial distress and mental health,6,7 but also large variation in the reported outcomes negatively impact the ability of researchers to assess which specific intervention component contribute to successful outcomes in AYAs. Furthermore, a systematic review and meta-analysis conducted by Richter and colleagues 7 revealed that among the 12 studies addressing mental health outcomes in this group, small and nonsignificant effects were detected. Hence, it is critical to develop age-appropriate interventions able to meet the needs of this group of patients while also assessing critically whether these benefits exist and persist over time.
Among the different areas influenced by the disease, social functioning is deeply affected by changes in AYAs' identity, difficulties in social reintegration with peers, and exchanges with supportive networks. 8 The literature also suggests that body image discomfort, impaired self-efficacy, and self-esteem represent some of the late effects of cancer treatments.1,9,10 In particular, self-efficacy and self-esteem are critical constructs in the transition process for AYA cancer survivors, 9 because health care self-efficacy has been associated with physical and psychosocial quality of life, whereas self-esteem is predictive of the social domain of quality of life. 11 This article has two aims: first the rationale for the development of the Framed Portrait Experience (FPE) as a psychosocial intervention to promote self-efficacy and self-esteem among AYA cancer survivors is presented. Then, results of a pilot study examining the preliminary efficacy of the intervention are described.
The FPE
The decision to utilize photography as a medium to facilitate the elicitation of the individual's life experience when coping with cancer as an adolescent or young adult is motivated by existing studies that have shown support for the use of pictures in clinical settings. 12 Previous studies in the context of oncology indicate that the self-portrait can facilitate the elaboration of the illness experience. In the study conducted by Frith and Harcourt, 13 self-portraits realized when receiving chemotherapy, then reviewed and discussed at the end of active treatment, strengthened the ability to cope with cancer and promote a positive self-representation. This intervention is rooted in four guiding principles: first, that cancer originates an affect-laden experience; second, by the recognition of the biopsychosocial challenges of experiencing cancer during adolescence and young adulthood; third, FPE recognizes the relevance of autobiographical narration for one's sense of self, and, finally, by the use of photographic portrait as a medium to facilitate this narrative. These last two principles contribute to meaning-making and empower the ability of the subject to experience and express emotions connected to the illness. These are of particular importance to maintain a sense of identity and continuity, 14 as AYAs face cancer while they are involved in achieving critical developmental tasks. 15
The FPE integrates numerous characteristics from established techniques such as therapeutic photography and re-enactment therapy, 16 which explore the individual's personal history to create photographic representations about memories that affect the subject's feelings. Similar to what occurs in therapeutic photography, pictures are used in the FPE to initiate a conversation about the illness' impact in the person's life story. As in re-enactment phototherapy, images are co-constructed. More specifically the photographer (who is also trained as a licensed social worker) takes pictures of the participants in contexts that are meaningful for them. These pictures are later printed and used during a clinical interview session to elicit a reflection about the changes experienced as a result of cancer, and how they relate and integrate into one's narrative of past, present, and future. Although Photovoice has been used to assess needs and the life experience of AYA survivors and family members, 17 in this intervention pictures are a shared product of the current intervention rather than the own creation of the participant.
The FPE is organized in two separate sessions occurring approximately 10–15 days one from the other. In the first one, starting from the illness narrative as it is recollected by the individual, pictures representing the subject in meaningful contexts are taken. In the second meeting, a number of selected pictures are used to elaborate on the disease experience with a therapist, as a way to reorganize the narrative about cancer. Preliminary evidence has been already presented, 18 whereas data related to participants' outcomes are discussed here for the first time.
Methods
Procedure
Using a purposeful sampling approach, 20 AYA cancer survivors were recruited between January and April 2016. Of these, 10 survivors completed the FPE, while the remaining 10 comprised the comparison group. All individuals in the intervention group complete pre- and post-test measures, whereas only eight participants in the comparison group returned completed surveys at post-test. Survivors in the comparison group were offered supportive care services available at the cancer center (i.e., clinical psychologist trained in psycho-oncology, supportive groups). Individuals were eligible to participate in the study according to the following inclusion criteria: being diagnosed with leukemia in their teenage years (12–19), and having received treatment (chemotherapy) at the participating institution, a pediatric cancer center in Northern Italy. The protocol was approved by the institutional review board of the participating institution and written informed consent was obtained from the participants. As a token of appreciation for their time, participants in the FPE group received printed copies of their pictures.
Instruments
Participants completed a questionnaire packet on paper, before and after the intervention. The Body Esteem Scale 19 examined self-perception of an individual's body or appearance. The questionnaire consists of 14 items, and the respondents indicate their degrees of agreement on a 5-point Likert scale. Three factors are assessed: attribution (evaluations of one's own body), weight (weight satisfaction), and appearance (feeling about one's appearance). The three subscales had adequate internal consistency. Self-esteem was assessed with the Rosenberg Self-Esteem Scale. 20 The scale consists of 10 items rated on a Likert-like scale, from 1 (strongly disagree) to 4 (strongly agree). Items are summed to produce a single index of self-esteem. The instrument showed good internal consistency (Cronbach's alpha = 0.84). The General Self-Efficacy Scale21,22 was used to measure one's belief to reach a goal. The scale is composed of 17 items scored on a 5-point Likert scale. It is organized in three components (general efficacy magnitude, general efficacy strength, and general efficacy competence). The first factor describes personal efficacy in relation to levels of performance difficulty; strength illustrates personal self-efficacy as the ability to persevere and cope with obstacles; the third factor general efficacy competence describes a general sense of competence in facing problems. The Simple Big5 Questionnaire 23 assessed personality traits. The questionnaire consists of 15 items rated on a Likert scale (1–7) and organized around 5 personality traits: openness to experience, conscientiousness, extraversion, agreeableness, and neuroticism. The Brief-COPE Coping Orientation toward Problems Experienced questionnaire 24 measures five coping strategies (problem-oriented coping strategies, avoidance strategies, social-support strategies, positive attitude, and transcendent-oriented coping). The instrument consists of 60 items rated on a 4-point Likert scale, with Cronbach's alpha ranging from 0.70 to 0.91.
Descriptive statistics were calculated to illustrate the sample characteristics in terms of sociodemographic and clinical variables. Independent sample t-tests for continuous variables and chi-square tests for categorical variables were utilized to check the homogeneity between groups. Mean differences on the variables of interest between groups at pre- and post-test were examined with independent sample t-tests. Data analysis was conducted using SPSS version 25.
Results
Participants were mostly women (55.6%), between the ages of 18 and 26 (mean age: 22.8, standard deviation [SD] = 2.53). They were high school graduates, and at the time of the study they all were working or attending university. All participants received a diagnosis of leukemia in their teenage years and their treatment lasted between 8 and 24 months, with an average of 18 months of treatment (SD = 7.38, Table 1). No significant differences were detected between intervention and comparison group for sociodemographic, clinical characteristics, and variables of interest at pre-test. At post-test, individuals in the intervention group reported statistically higher scores on self-efficacy total score (t(16) = 2.17, p < 0.05) and in the self-efficacy competence subscale (t(16) = 2.37, p < 0.05). In addition, survivors in the FPE had higher scores for total self-esteem (t(9) = 2.46, p < 0.05). At post-test, members of the comparison group had higher score for transcendent-oriented coping (t(16) = −2.72, p < 0.05). No differences were identified for body self-esteem and personality traits (Figure 1).
Post-test differences between intervention (FPE) and comparison group. FPE, framed portrait experience.
Descriptive Statistics of the Intervention (Framed Portrait Experience) and Comparison Group
Discussion
This study described the FPE as an intervention to promote self-efficacy and self-esteem among AYA cancer survivors and illustrated results from the pilot study conducted to test the intervention. Although larger samples and more rigorous approaches are needed to fully assess the efficacy of the FPE, in this sample of AYA leukemia survivors the program promoted the individuals' ability to elaborate on the illness experience and to assimilate the disease within the larger narrative of their lives through a process aimed at integrating pictures, meaningful objects, and memories. Our findings suggest that participants display a tendency to increased self-efficacy, to perceive themselves as better able to manage problems and more equipped to face obstacles. If these findings are confirmed, the FPE can be offered to survivors experiencing low self-efficacy or to those at-risk of poor adherence to treatment. The intervention may be suitable to promote medical transition readiness and lifestyle modification, since a recent literature review showed that higher self-efficacy predicted positive health behaviors and engagement in treatment. 24 Finally, in our analysis individuals in the comparison group reported higher scores for transcendent-oriented coping at post-test, which has been associated with worries and obsessive behaviors by the authors of the instrument. 23 This finding shows similarities to the Resilience in Illness Model, 25 where illness-related distress may diminish the ability of the individual to engage and expand boundaries.
Conclusion
Limitations such as the small sample size, the lack of randomization, and absence of comparison with healthy peers affect this initial investigation. Future research is needed to further examine qualitative feedback from participants, the implementation of this intervention in more internally valid studies, and to evaluate its application in the context of age-appropriate psychosocial care offered to AYA survivors. Results of this pilot study support that the FPE and the application of photographic techniques can represent a low-cost and easy-to-implement approach to address self-efficacy and self-esteem among AYA cancer survivors.
Footnotes
Acknowledgments
Authors express their gratitude to Mr. Attilio Rossetti, photographer, and to Dr. Momcilo Jankovic, MD, for their assistance with the research project.
Author Disclosure Statement
No competing financial interests exist.
Funding Information
No funding was received for this article.