BRIEF COMMUNICATION: What do adolescents and young adults perceive is the main challenge during the transition to survivorship?

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FEA TURES /Ch R o niq UES BRIEF COMMUNICATION

What do adolescents and young adults perceive is the main challenge during the transition to survivorship?

by Irene Nicoll, Gina Lockwood, Raymond J. Chan, Paul Grundy, and Margaret I. Fitch

“I struggle with depression and anxiety now. After my surgery, my husband and I decided we wanted to try and have a baby, but our only option was IVF. It has caused huge financial challenges and stress on our relationship. I believe I will live with this stress for the rest of my life and wasn’t given any guidance or help if there were other areas or programs we could reach out for help.” AB1100428

INTRODUCTION

M

ore than 1 million diagnoses of cancer are made worldwide in the adolescent and young adult (AYA) population (Ferrari & Barr, 2017) and over- all survival rates are approaching 80% in some countries (Close et al., 2019). The personal, societal, and socioeconomic impact of cancer on AYAs is dispropor- tionately greater than on adults. The dis- ruption to their lives at the specific stage of their development can have life-long

ramifications (Nass et al., 2015). Over the past two decades, much progress has been made in developing specialty services for this population and learning about their needs while undergoing treatment (Barr et al., 2016; Hydeman et al., 2019; Quinn et al., 2015; Sawyer et al., 2017). However, what is needed is a better understanding about their perspectives regarding transition to survivorship care.

PURPOSE

The Canadian Transitions Study (Fitch et al., 2019) provided an opportunity to explore the experiences of cancer survivors and gain a deeper understanding about the impact treatment consequences might have one to three years following the completion of treatment.

This brief communication will present the perspectives of AYA survivors about the main challenge they experienced during the transition to survivorship as reported in the Transition Study and the resulting implications for oncology nursing practice.

METHODS

The full description of the Transition Study methods is presented elsewhere (Fitch, et al., 2019). In brief, a survey was distributed to a randomly selected sample of 40,790 cancer survivors from across 10 Canadian provinces. The sample included adult survivors (aged 30+

years) of breast, prostate, colorectal and melanoma diseases with no metastatic spread, and selected hematological can- cers; and adolescents and young adults (AYA, 18 to 29 years) with all non-metastatic cancer types except testes, where metastatic disease was included. Ethical approval was given by the respective ethical boards of the 10 provincial cancer agencies that disseminated the survey.

For the purposes of this brief communication, only the comments from AYA respondents concerning what con- stituted the main challenge for them during the transition to survivorship are presented. Frequency counts were cal- culated for numerical data and content/

theme analysis was completed for the written open-ended comments (Hsiu- Fang & Shannon, 2005).

RESULTS

A total of 575 AYA survivors responded to the Transitions Study.

Sixty-one percent (n = 349) of the sample were female. Fifty-two percent (n = 299) indicated their treatment had occurred between one and three years previously and 75% (n = 433) had not experienced metastatic disease. Four hundred and ninety-seven wrote free-text responses to the open-ended question regarding the main challenge experienced as they transitioned to survivorship.

MAJOR CHALLENGE—

QUANTITATIVE RESULTS

Four hundred and ninety-seven of the 575 AYA survivors (86.4%) provided a total of 955 comments in response to the main challenge question. (See Table 1). Twenty-one (4.2%) respondents indicated they did not experience a main challenge or wrote a positive com- ment (i.e., Je n’ai pas eu de difficulté. J’ai vite repris le dessus sur ma vie; I had no dif- ficulty. I quickly took over my life.) There were 934 main challenges identified by 476 respondents. Two hundred and nine respondents (43.9%) identified a sin- gle main challenge while the remainder (n = 267, 56.1%) offered more than 1 challenge, ranging from two to 10 challenges.

The most frequently identified challenges were physical, accounting for 48% (n = 462) of the main challenges

AUTHOR NOTES

Irene Nicoll, MBA, Health Care Consultant, Toronto, ON

nicollirene4@gmail.com

Gina Lockwood, MMath, Biostatistician Consultant, Toronto, ON

lockwo12@gmail.com

Raymond J. Chan, PhD, Professor in Cancer Nursing, Cancer and Palliative Care Outcomes Centre, Queensland University of Technology, Division of Cancer Services, Princess Alexandra Hospital, Brisbane, Australia

Raymond.Chan@qut.edu.au

Paul Grundy, MD, Professor Pediatrics and Oncology, University of Alberta, Edmonton, AB Paul.e.grundy@ahs.ca

ORCID: https://orcid.

org/0000-0003-2645-8266

Margaret I. Fitch, PhD, Professor (Adjunct), Bloomberg Faculty of Nursing, University of Toronto, 207 Chisholm Ave., Toronto, ON M4C 4V9

Marg.i.fitch@gmail.com

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identified. Specific challenges were identified as reduced physical capacity (e.g., fatigue, lack of stamina), physical side effects and symptoms (pain, therapy effects) and changes in body function and appearance (scars, cognitive changes).

The second most frequently identified main challenges were psychological effects (n = 234, 24.5%). Specifically named challenges included coping with emotions (e.g., anxiety, depression, fear of recurrence) and the struggle to return to normal (managing uncertainty, regain- ing confidence, self-esteem).

MAIN CHALLENGE—

QUALITATIVE RESULTS

Five themes emerged from the qualitative analysis of written comments.

The comments reflected the inter- woven nature of living after a cancer diagnosis and treatment where what happens in one domain or area of one’s life (e.g., physical) has a resounding impact on others (e.g., emotional, practical). It seemed difficult for these survivors to compartmentalize and describe events exclusively in one domain. Many respondents described the interaction of experiences and striving to ‘get back my life’. They shared a sense that their lives had been derailed for a time and now they were trying to recover it, yet facing challenges (see Table 2 for illustrative quotes).

Theme: ‘my physical body is not the same’

A large proportion of the respondents described a main challenge for them was living with ever-present physical changes

following the end of their cancer treatment. They attributed the changes as resulting from the cancer treatment itself (e.g., fatigue, appetite/taste alterations, neuropathy), medications (e.g., hormonal fluctuations, weight gain), or physical limitations (e.g., walking difficulty, stamina, limited range of motion). In some cases, the respondents indicated they had not been informed to expect these physical changes. Although respondents antici- pated these physical consequences would dissipate over time or they would adjust to them, respondents also conveyed a sense of uncertainty about when, and if the changes would resolve.

Many respondents described a main challenge as their decreased sense of physical capacity, citing exhaustion or fatigue, lack of energy or stamina, weak- ness, loss of muscle strength or limitations in mobility. Phrases such as,

‘lack the energy to life a normal life’ and

‘no energy for daily activities’ empha- size the impact of this decreased physical capacity. Recovery from surgery was described as taking longer than they expected with accompanying frus- trations about not being able to do what they wanted to do and needing assistance. Adjusting to regimens and finding the ‘correct’ dose was noted specifically by those required to take thyroid replacement medication and those taking steroids. Numbness and/or tingling in fingers and feet was associated with cold intolerance and difficulty walking or performing some tasks.

Of particular note were the descrip- tions of changes in body appearance (e.g., having one breast, hair loss, scars,

weight change) or function (e.g., living with an ostomy), cognitive changes (e.g., memory loss, ability to concentrate, comprehension), and sexuality/

infertility. Comments about these types of changes were accompanied by reflec- tions about the psychosocial distress these changes engendered and links with self-esteem, self-confidence, relationships, and future family planning.

Some respondents wrote about feeling they had aged and finding it hard to accept these bodily changes ‘at such a young age’.

Theme: ‘dealing with all the emotional baggage’

Emotional consequences of being diagnosed and treated for cancer con- tinued to accompany many respondents into their survivorship experience. In the words of one participant, ‘there are emotional scars’. Anxiety, in some cases including panic attacks and depression were cited frequently by respondents as main challenges. Once they had finished their primary cancer treatment, many respondents found they worried about the cancer returning and how they could prevent that from happening. Fear of recurrence was a constant companion for many. Living with the uncertainty about the future and over- coming a sense of impending doom required effort.

Some respondents describing their main challenge as learning ‘to accept I had cancer’ and understanding ‘how my body betrayed me’ while others saw the challenge as ‘coming to terms with life’

and figuring out ‘who I am now’ and

‘what comes next’. Others expressed feeling a sense isolation and being out of place, ‘not myself’. Additionally, respondents described difficulty dealing with everything in their lives at this point.

They felt overwhelmed by all that had happened and distressed trying to deal with, and balance, it all. Many described a desire to talk with others about the emotions they were feeling, but either did not have someone with whom they could interact or did not know about services that served this purpose.

Theme: ‘getting things back on track’

Some respondents described a main challenge as grappling with the Table 1: Frequency of type of main challenges identified

Type of challenge Frequency of written comments

identifying main challenge Percent (%)

Physical 462 49.5

Psychological/emotional 234 25.1

Practical 88 9.4

Lifestyle adjustment 73 7.8

Health care delivery 48 5.1

Relationships/support 29 3.1

Total 934 100

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Table 2: Illustrative quotes for each theme Theme Illustrative quotes

‘my physical body is not the same’

• One of the biggest challenges post treatment was just working on my image and my self-esteem. I lost lots of weight during the entire process and I was already a fairly skinny guy to begin with. I had some anxiety in social situations and it took me a while to build my confidence levels back up. BC1002510

• Main challenge I faced was the fact that I had an Ostomy bag. After that was removed I still continue to have irregular bowel movements, but has slowly been getting better. AB 1104031

• The biggest challenge I experienced after my treatment was getting my Synthroid to the right dose. AB1100454

• Fatigue. My health condition was not what it used to be and I was unable to do anything too physical. Medication was an issue, as I needed to remember to take medication every day. This caused trouble when attending social events. AB1100487

• The main challenge for me was the recovery from surgery, the fatigue and inability to exercise and get into my normal routine. SK1200058

• Mood swings, emotional, angry, low energy, heart burn, headaches, head pulsating, major weight loss/gain, dry skin, thirst/dry mouth. BC1003381

• My hair growing back, people commenting asking why I shaved it, plus hair growing in unwanted places because of the steroids. ON-1400147

‘dealing with all the emotional baggage’

• Anxiety and depression. Unexplained symptoms appeared about four months after my final treatment such as fatigue, headaches, dizziness, tingling in face, neck and jaw twitches, not being able to concentrate, vertigo. NS1600071

• Just dealing w/emotional aspect of “cancer” label, fear of it returning/pain/death; fear of being marked as defective/unworthy and so hiding that it happened; feeling guilty when making unhealthy decisions. BC1003769

• I feel that the mental health of me and my spouse was the biggest challenge after surgery. I suffer from anxiety, depression, anger and being diagnosed and then having surgery put me into a cycle of anxiety, depression and anger and would lash out. NS1600086

• C’est plutôt ma santé psychologique qui a été difficile. Dépression suite au diagnostic + anxiété +++; It was rather my psychological health that was difficult. Depression following diagnosis + anxiety +++ QC1502788

• Mental challenges (worrying, depression) and the feeling of not being able to return to a normal life. BC1004205

• Mostly psychological dealing with the occasional “what ifs.” AB-1100398

• Not having someone to help me. Loneliness made me depressed. AB-1101265

‘getting things back on track’

• I was still in high school, so I suppose my biggest challenge was being able to go back to school and get back into routine. NB1700078

• Returning to my “normal” - going back to school, moving on from cancer. ON1401375

• Savoir et me repositionner par rapports à mes plans / projets de vie; Know and reposition myself in relation to my life plans / projects. QC1503368

• Getting used to my new condition after surgery. Stomach and esophagus were not as before, therefore I had to find out how to eat and what to eat...portions of food...etc. AB1100019

• Recommencer à faire ma vie comme s’il c’étais rien passé. De plus, je ne sais pas si je suis fertile ou non; Start making my life again as if it hadn’t happened. Besides, I don’t know if I am fertile or not. QC1502212

‘I am not the same as before’

• Just getting back to myself in every way, especially my health. MB1302931

• Now that I was done treatment ... now what do I do? How to go back to work and live in my normal world again. ON1400293

• De vivre comme si rien ne c’était passer mais que tout le monde vous traîte encore comme une personne fragile. Aussi du fait que je ne peux pas en parler sans que le monde prenne pitié de moi; To live as if nothing was happening, but that everyone still treats you like a fragile person. Also the fact that I can’t talk about it without the world taking pity on me. QC1501320

• Emotional stress and feeling like no one understood what was happening to me. Dealing with a visible surgical scar with curious friends and family and having to return to school. I felt fatigued all the time post-surgery for over a year; I physically had a hard time adjusting to my thyroid being removed. ON1400139

• Like most other cancer survivors, an overwhelming fear of death and its effects concerned me. It is extremely difficult to accept one’s self- esteem given how impairments will affect their life. At my age I often was emotionally deflated due to having two brain tumour surgeries done to save my life and realizing the harsh outcomes that affect my day-to-day existence. AB1100431

• It was hard for me to adjust to my “chemo brain”....the teachers were great, but somehow I felt they didn’t quite understand just how amazing it was that I was capable of obtaining such high mark with such a slow brain. NB-1700078

• The main challenge that I have experienced after my surgery was my sexual life to which I still struggle today. QC-1506338

‘cancer changes everything – I need proper follow-up care’

• Feeling isolated; discouraged by my physical restrictions/limitations; feeling tired and weak; waiting months and months for my hair to grow back. Main challenge: fear of cancer coming back. BC 1004074

• Eating, sleeping, going out, strenuous activity, looking for work, and anxiety. AB1100326

• Getting other healthcare providers to take my side-effects seriously. BC1005011

• Once your medical treatment is finished I felt like the doctors were done with me.... until the cancer returns. My oncologist was very desensitized and made me feel like I would be back to see her within a few years. I was 27 when I was diagnosed and still feel as though no one knows what to do with me. They don’t know how to treat breast cancer at my age, nor can they answer any of my questions about how to prevent the cancer from coming back. NB1700037

• Doctors were uneducated in dealing with complications. I suffered and still do with many debilitating after effects that are still currently keeping me from working of having any quality of life with no help or resources given. I am still trying to figure it out myself. BC1005009

• I had secondary pain and since the cancer was in remission I no longer got help. I got told “the cancer is gone, be happy.” AB-1100296

• Getting a dermatologist–oncologist to provide regular screening. QC-1506308

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practical aspects of moving on with their lives and either adjusting their lifestyle to their bodily changes (e.g., ‘cop- ing with the new normal’) or working to ‘get back to my previous lifestyle’. The primary practical challenges related to returning to work or school and financial issues. Returning to work or school meant going back to busy work environ- ments and, at the same time, having to deal with physical consequences such as fatigue and cognitive changes, and not feeling ready or able to perform at their previous level. For some, financial pres- sures meant they had to return to work before they felt ready. Some worried about job loss and missed career oppor- tunities if they did not return to work.

Others found they did not have the energy to pursue employment or found they did not want to tell a prospective employer about their cancer.

The recovery from the effects of treatment left many respondents working to achieve a previous level of func- tioning or performance, ‘getting back to normal’, and being able to function on their own. For others, the recovery called for finding a way to live with a ‘new normal’. In the former instance, respondents were engaging in exercise and fitness regimens to reach a previous level of energy and stamina, yet express- ing frustration at the length of time it was taking to do so and wondering if they would ever be able to reach their goal. They expressed the notion that six months to a year was ‘a long time’ for this to happen. Others approached the situation by adapting and making alterations to how they did things because of changes they felt were permanent. They often expressed feeling uncertain about exactly how to make the adjustments and wanted instructions.

Lifestyle changes also focused on finding the best approaches to neces- sary dietary changes, sleeping pattern alterations, mobility restrictions, and bowel pattern changes. These types of changes often led to making changes in daily routines, in the types and frequency of social interactions, and in accepting help. Finding workable solu- tions often necessitated trying different approaches, with varying degrees of suc- cess. In the words of one respondent,

‘you have to find a rhythm that is sat- isfying’. Respondents described feel- ing frustrated that they were not given information about how to go about making the adaptations instead of having to learn on their own, ‘how to best live my life now’.

Theme: ‘I am not the same as before’

Following the completion of cancer treatment and moving on with life led some respondents to experience challenges regarding their relationships with family members or with friends.

Respondents expressed worry about family members and the support those individuals could use to help them cope.

Some respondents described how they were ready to move on with their lives and family members would still be treating them as fragile. Others found their families were pushing them to return to normal as quickly as possi- ble, not truly understanding the time it takes to integrate all that happened and to regain strength and a sense of self.

Relationships with friends could also be fraught with discomfort and awkward interactions, as others do not know what to do or say to the cancer survivor. Respondents described the lack of understanding of teachers or work colleagues about what they had been through during their treatment or what issues were still a struggle. Finding ways to handle and talk about these situations was challenging for these survivors.

Some respondents described a main challenge as dealing with their infertility and concerns about future family planning. While some already had chil- dren and were coping with managing childcare responsibilities, others were concerned about when or if they could continue to build their families or how to proceed in light of infertility. Seeking assisted fertility services was flagged as a financial consideration.

Theme: ‘cancer changes everything – I need proper follow-up care’

Respondents described main challenges related to the healthcare system and obtaining appropriate and timely follow-up care for themselves. The challenges related to obtaining information, relevant communication, sensitive and

knowledgeable healthcare providers, appointment scheduling, and access to services.

Respondents experienced major challenges obtaining information they thought was important for them as survivors: what to expect during their transition to survivorship, late and long-term effects, follow-up schedules, services that were available to them, support groups (especially peer). They found they had to search out the information for themselves on their own.

If they did receive brochures or information, it was often crafted for older individuals.

Some found their interactions with healthcare providers presented a signif- icant challenge. They were often disap- pointed with the communication from healthcare providers. Respondents felt their issues were dismissed by the providers who did not seem to fully appre- ciate what they were coping with as survivors.

Respondents shared comments about experiencing a lack of organized follow-up care. Some found trying to obtain access to services or programs following treatment was their main challenge. The services mentioned specifically included physiotherapy, occupational therapy, psychology, social work, and specialists such as endocri- nology and dermatology. Lengthy wait times and lack of service availability in the local setting were mentioned frequently as barriers. Finally, developing a clear understanding about the routines for follow-up (e.g., tests, appointments) was identified as a main challenge.

Appointment schedules sometimes were not regular, convenient, or easy to navigate.

IMPLICATIONS FOR ONCOLOGY NURSING PRACTICE

Several implications for oncology nurses emerge from this work. In the first instance, oncology nurses working with adolescents and young adults need to have an appreciation and understanding about the impact of cancer treatment on these individuals after treatment is finished. This impact strikes individuals in different ways and

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can continue for a lengthy period of time. The impact is not necessarily only in one area of the person’s life, but can have multiple impacts on physical, emotional, and daily living domains.

Secondly, oncology nurses need to take the opportunity to establish relationships with AYA survivors that are based on careful listening about the survivors’ perspectives and desires. This generation of AYAs has certain charac- teristics that can influence their health behaviour including a strong sense of entitlement and self-interest, comfort with technology, connection with peers through social media, and a strong

desire for information and engagement in decision-making (Diesing, 2016;

Johnson & Romanello, 2015; Ebeling et al., 2020). Working together with AYA survivors to design follow-up plans of care that are based on comprehensive assessment and tailored to their individ- ual needs is important.

Finally, many of the challenges AYA survivors identified would be best served by linking with various community-based services (e.g., psychology, physiotherapy, occupational therapy, financial advice, etc.). Oncology nurses need to be knowledgeable about appropriate community resources and able to

refer AYA survivors as needed. This may require organizing avenues for referral between cancer programs and community-based services that are quick and easy to navigate for the AYA survivor.

ACkNOwLEDGEMENT

The authors would like to thank Ruth Bartlett of Toronto for her assistance contextualizing our data. Ruth is an AYA and is currently enrolled in graduate school at Wycliffe College, University of Toronto, studying her second Masters degree, a Masters of Divinity.

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