Photographs of Meaning: A novel social media intervention for adolescent and young adult cancer patients

BACKGROUND

Adolescents and young adults with cancer (AYAs) have distinct psychosocial needs compared to pediatric and adult patients due to the interaction between the cancer experience and their developmental stage [1]. They are at-risk for a variety of negative psychological outcomes, including depression, anxiety, posttraumatic stress and fears of recurrence [2–4]. AYAs have consistently reported unmet psychosocial needs, both during and after treatment [1, 5]; however, AYAs underutilize psychological support services which may be due to differences in AYAs’ developmental life stage and the associated preferences (social outings with other survivors, refusal to return to cancer center) [5].

Social media (SM) provides a promising platform for engaging AYAs. Individuals ages 18-29 are more likely than individuals ages 50 - 64 to use SM (88% vs 64%) [6]. Given their comfort and familiarity with SM as a communication tool, supportive interventions utilizing SM may be more appealing and less stigmatizing than traditional psychotherapeutic interventions.

The aim of this study was to assess the feasibility of a novel intervention called Photographs of Meaning (POM). POM-AYA was designed to provide AYAs an opportunity to reflect on and process themes in a non-conventional manner, using a SM application to facilitate engagement. Meaning-centered psychotherapy (MCP) in individual and group contexts has been shown to be an effective treatment in adult cancer populations in reducing psychological and spiritual distress [7]. Meaning-based approaches have promise in AYA populations given their focus on identity, social connectedness and hope, which are all salient developmental themes associated with this population. Photovoice is a participatory research method in which participants take pictures to illustrate their situations [8, 9]. POM-AYA was developed based on MCP and photovoice concepts and is introduced to AYA cancer survivors here.

METHODS

Design:

This exploratory study assessed the feasibility of POM-AYA, a 10-week meaning based intervention for AYA cancer population. Participant enrollment, retention, and satisfaction data were used to assess the feasibility and engagement rates of the intervention.

Participants:

104 eligible participants were identified from a single cancer center. Eligibility criteria were: (1) age 15-24 at the time of diagnosis, (2) diagnosed within the last three years, and (3) English language comprehension in oral and written form. Exclusion criteria were: a diagnosis of mental retardation, severe or untreated psychopathology, or dementia. Participants were recruited through a mailing and follow-up phone call regarding the nature and purpose of the study.

This study was approved by the local institutional review board.

Social media application:

Participants were given access to a closed study portal on the PixStori^™ mobile and website application. PixStori ^™ is a social media platform by which participants are able to upload photographs along with audio or text narratives. Participants’ “pixstories” were shared among the cohort and the Pixstori^™ portal enabled the participants to view, “like”, and comment on one another’s posts.

Intervention:

The POM-AYA intervention was derived from MCP, an empirically supported manualized psychotherapy for advanced cancer patients [7]. Content areas were adapted for an AYA population and converted into 9 weekly themes. Participants were instructed to upload a minimum of two pictures with accompanying text or audio narration each week based on their interpretation of the weekly theme. Instructions regarding the narrative content of the themes were adapted from photovoice methods (“Tell us about the picture and what’s going on, and “Tell us the story about why it’s important”) [8, 9].

Weekly themes were: “Who am I?”; “Living with cancer”; ”What matters most?”; “Understanding my roots”; “What makes me proud?”; “Coping with bad days”; “Living life to the fullest”; “Experiencing the moment”; “My story of uncertainty and hope”; and a review week. Participants completed a satisfaction questionnaire and follow-up interview at the end of the intervention.

RESULTS

Participant Characteristics:

Thirteen participants were recruited ranging in age from 17 to 26 (M_age= 23.15; SD_age = 2.76) and 83% were female. Most were leukemia/lymphoma survivors (54%), along with papillary thyroid carcinoma (23%) and melanoma (15%) survivors. Three participants (23%) did not participate while 5 participants (38%) completed at least 9 of 10 weeks. Remaining participants partially completed the 10 weeks. Excerpts narratives are shown in Table 1. Of the 5 participants who actively participated, 3 lived between 22.8 and 504 miles from the cancer center. Forty-seven percent lived beyond 15 miles from the cancer center.

Table 1:

Weekly themes and sample narratives.

Week:	Quote Example:
Week 1: Who am I?	Pp004: “Who am I? Happy. This picture was taken after my diagnosis. I was in the middle of my first cycle of chemo and had decided that I wasn’t going to let cancer define me. I was going to continue to be happy.”
Week 2: Living with cancer, how has cancer changed who I am?	Pp002: “I chose this picture because it’s one of my scars from melanoma and it’s a daily reminder of what I went through, but also that I survived it and I beat cancer.”
Week 3: What matters most?	Pp008: “I think week 3 is really tough for probably all of us. Of course family and friends matter to us the most, but another thing that matters to me is just being happy. Waking up and being happy every day…” I think that’s tough on every human even if they have cancer or not. I mean, life is really tough. I choose this picture because I was extremely happy, I think one of the happiest times I’ve ever been was at the ocean. I felt happy and free and just peaceful, like I left all of my problems at the shore.”

Overall, results of the satisfaction questionnaire indicate positive reactions from those who participated with 100% indicating they would recommend the POM-AYA intervention to others. 50% expressed discomfort with the audio narrative and all participants felt the number of assigned photos each week was appropriate. 33% indicated their preference for a larger cohort size, while 67% found the cohort size appropriate.

Qualitative responses in the follow-up interview were also positive. One participant stated “Honestly, I thought it was pretty awesome, I was really happy to be a part of it, so I don’t have anything for feedback…I think it will be a really good thing.” Participants welcomed the opportunity to share experiences with others: “Really nice to connect and see life after a diagnosis in people similar in age and how they deal with it and see what works them and how they get through their day-to-day life and cope.” The only negative feedback came from frustration associated with technical problems recording their narratives.

Discussion

In this study, an exploratory method to engage AYA cancer patients and survivors was introduced. Based on MCP and photovoice, POM-AYA is an innovative and feasible program which may be a promising SM intervention to enhance psychological well-being among AYAs.

The strengths of the POM-AYA includes its flexible time commitment and its ability to be offered remotely compared to traditional psychotherapy. Indeed, the majority of participants lived over 15 miles from the cancer center and 2 of the most active participants living 75 and 504 miles away. The SM feature provides easy accessibility and allows participants to engage as they wish. The feedback from participants confirm the POM-AYA tasks are neither difficult to complete nor too long in duration of intervention. The posting of photographs and narratives based on themes facilitated AYAs to share their thoughts in ways conventional psychosocial tactics may not, and it also encouraged social connectedness with the other participants.

Our results reflect the difficulty in engaging AYA cancer patients in psychosocial interventions despite extensive outreach efforts as it has been previously described [10]. Only 12% of eligible participants were recruited. Of these, under 50% of participants regularly participated. Feedback from participants identified how a remote consent process and a less “clunky” SM application would enhance the POM intervention experience.

Overall, participants responded positively to the structure and content of the intervention. Given this positive feedback, the POM intervention has significant promise for further investigation as a support mechanism for AYA cancer patients. An additional cohort study is underway and indeed an upgrade to the application along with a more streamlined remote consent process has been included.

Five Key Points.

1. AYA cancer patients and survivors have unique psychosocial needs compared to pediatric and older adult populations.

2. AYAs do not readily engage in traditional psychosocial interventions.

3. Photographs of Meaning (POM) is a novel approach using a social media platform to deliver a 10-week supportive intervention based on meaning-centered psychotherapy and photovoice.

4. Participants (AYAs 16 – 24 years of age) expressed high rates of satisfaction with the content of the intervention, as well as with the social media platform, and described the experience as beneficial.

5. POM has the potential to enhance the psychosocial well-being of AYAs who have endured a stressful experience such as cancer, with future larger-scale studies needed to assess efficacy.