The Needs and Care Experiences of Adolescents and Young Adults Treated for Cancer in Adult Surgery Clinics: A Qualitative Study

Abstract

Purpose:

Adolescents and young adults (AYAs) with cancer hospitalized in adult surgery clinics are an overlooked group of patients. They are a minority hospitalized among elderly surgical patients, and the surroundings and care are designed with older patients in mind. A growing body of research focuses on AYAs' experiences of cancer care. However, studies exploring care experiences in terms of in-patient surgery treatment are still needed. Hence, the purpose of the study was to explore the needs and care experiences of AYAs, 15–29 years of age, treated for cancer in adult surgery clinics.

Methods:

This qualitative study was based on semistructured interviews with 15 AYAs with cancer from seven surgery clinics at Rigshospitalet, Copenhagen University Hospital, Denmark. Data were analyzed and interpreted using inductive content analysis. The Danish Data Protection Agency approved the study (project no.: 05617).

Results:

Three themes were identified: (1) being the black sheep – experiences of being young in an adult environment, (2) the significant nurse – experiences of the essential relationship between AYAs and the nurses, and (3) the wounded body – experiences of how the physically changed body affects the mind.

Conclusions:

Our findings showed that the psychosocial needs of AYAs with cancer hospitalized in adult surgery clinics were not being adequately met. Initiatives are needed to improve the psychological and social well-being of this vulnerable patient group, while hospitalized for treatment in surgery clinics.

Introduction

Adolescents and young adults (AYAs) with cancer represent a small, yet vulnerable group of patients whose lives and development are affected by a life-threatening illness. Although pediatrics, oncology, and hematology increasingly focus attention on AYAs with cancer as a particular group, AYAs with cancer hospitalized in adult surgery clinics nonetheless remain an overlooked patient group. They are a minority hospitalized among elderly surgical patients, and the surroundings and care are designed with older patients in mind.

Since 2002, the World Health Organization (WHO) has called for the development of youth-friendly health services, just as guidelines have been written to standardize a developmentally appropriate care environment.^1–3 The increase in AYA units worldwide indicates that they possess a culture that ensures that AYAs receive the physical, mental, and social support they require.^4–11 In Denmark, only a few hospital departments are dedicated exclusively to AYAs and/or AYAs with cancer.

Studies suggest that AYAs with cancer have special needs that are not always adequately met during hospitalization.^12–21 The approach health care professionals (HCPs) take toward this patient group is crucial in terms of health-related quality of life.^13,22–24 Compared with older patients, AYAs are generally more dissatisfied across all aspects of patient care and less inclined to report that they feel a sense of security, are treated with respect and confidentiality, trust the staff, and are involved in their own care and treatment.^25–27

To our knowledge, there are no studies examining AYAs' experiences of cancer care in the case of inpatient surgery. Surgical treatment regimens, which differ from oncology and hematology regimens, are typically fast-track programs with early discharge and sparse contact with a physician. The purpose of this study was to explore the needs and care experiences of AYAs, 15–29 years of age, treated for cancer in adult surgery clinics.

Methods

A qualitative study was carried out in collaboration with seven highly specialized surgery clinics: The Departments of Cardiothoracic Surgery; Orthopaedic Surgery; Urology; Otorhinolaryngology, Head and Neck Surgery & Audiology; Plastic Surgery; Neurosurgery; and Surgical Gastroenterology at Rigshospitalet, Copenhagen University Hospital, Denmark. These departments are some of the largest in Denmark treating AYAs, adults, and the elderly with benign or malignant disorders from all over Denmark. The typical patients are middle aged and elderly people from the Capital Region of Denmark. The Danish Data Protection Agency approved the study (project no.: 05617).

Participants

Fifteen AYAs with cancer were included in the study using stratified purposeful sampling to achieve maximal variation and information-rich cases, with selection based on sex, age, diagnosis, clinic, and length of hospital stay. Sampling continued until diversity and data saturation were achieved. Participants were approached, while hospitalized, by the primary investigator (A.O.) or by trained clinical nurse specialists in the period from November 2018 to April 2019. AYAs were eligible for inclusion if they were 15–29 years of age, had microscopically or histologically verified cancer, were hospitalized for a surgical procedure, and/or were hospitalized for at least one night at one of the seven surgery clinics. Table 1 provides a detailed summary of participant characteristics.

Table 1.

Participant Characteristics

Characteristics	n
No. of participants	15
Sex
Male	5
Female	10
Age
Mean age (range)	22.5 (15–29)
Level of education^a
Level 1	3
Level 3	9
Level 6	3
Marital status
Single	8
In a relationship	5
Married	2
Children
Yes	1
No	14
Primary diagnosis
Bone cancer	3
Testicular cancer	3
Gastrointestinal cancer	1
Head and neck cancer	3
Breast cancer	1
Sarcoma	2
Gynecological cancer	1
Urinary tract cancer	1
Clinics
Cardiothoracic surgery	5
Urology	4
Head and neck surgery^b	3
Surgical gastroenterology	2
Orthopedic surgery	4
Neurosurgery	1
Plastic surgery	5
Total admissions in surgery clinics^c	24
Days of hospitalization
Median (range)	5 (2–40)

Level of education is based on the International Standard Classification of Education (ISCED), 2011. Level 1, Primary education; Level 3, Upper secondary education; Level 6, Bachelors or equivalent level.

Full name: Otorhinolaryngology, Head and Neck Surgery & Audiology.

46% of the participants were hospitalized in more than one of the seven surgery clinics during their illness, but were only interviewed once.

Data collection

Data were collected using semistructured interviews. The interview guide was developed based on clinical experience and existing research in the field. The guide allowed the interviewer to manage the interview, while simultaneously permitting participants to freely share their experiences and thus gain new insights.²⁸ The interview guide is provided in Table 2. All interviews were conducted by the same interviewer (A.O.), who is a nurse and researcher and did not participate in the clinical care of participants. An experienced qualitative researcher (M.M.), together with an experienced physician specialized in adolescent medicine (K.B.) supervised the interview process. The participants were interviewed within 3 weeks after discharge from the surgery clinics. The participants had the choice of being interviewed at the research facility (11) or at the hospital in connection with an outpatient visit (4). The interviews, which lasted 20–80 minutes, were audio-recorded and transcribed verbatim. The diagnosis and length of hospital stay were obtained from electronic health records.

Table 2.

Interview Guide

Topic	Interview question
The overall experience of being an AYA with cancer hospitalized in an adult surgery ward	Can you tell me about, what it was like for you to be hospitalized in the surgical ward? What did you find positive? What did you find negative? How do you think the care and treatment you received met your needs? How could the experience have been improved upon?
The experience of the HCPs	What was your impression of the HCPs in the surgery ward? What did you expect from the HCPs? How do you think the HCPs handled the fact that you are young having cancer? If the HCPs is to become better at caring for AYAs with cancer in the future, what will your suggestions be?
The experience of the contact and communication with the HCPs	How did you experience the contact with the HCPs? How did you experience the communication with HCPs? What wishes did you have in relation to conversations with the HCPs? What did you talk about with the HCPs? If the HCPs are to become better at talking with AYAs with cancer in the future, what will your suggestions be?
AYAs' psychological needs when hospitalized in a surgery ward	How did you feel emotionally when you were hospitalized in the surgery ward? What was difficult? What kind of issues and concerns did you share with the HCPs? What kind of help and support did you need? If the HCPs are to become better at providing help and support to AYAs with cancer in the future, what will your suggestions be?
AYAs' social needs when hospitalized in a surgery ward	What were your impressions of the other patients? Whom did you share a room with, in the surgery ward, and what was it like? What needs did you have, for social contact with other AYAs during hospitalization? What opportunities did you have for contact with other AYAs during hospitalization? What did it mean to you?
The experience of the physical environment in the surgery ward	What was your impression of the physical environment in the surgery ward? What did the physical environment mean to you and why? If the physical environment should be any different, what would your suggestions be?
The experience of the physical changes	How did you experience the physical changes that the operation brought about? Has there been anything about your physical changes that you felt a need to talk about? How were you prepared for the physical changes? How were the physical changes addressed by the HCPs? What was important to you in relation to the physical changes?

AYA, adolescent and young adult; HCP, health care professional.

Data analysis

Data were analyzed using inductive content analysis. This method is characterized by being systematic organizing words into smaller content categories.²⁹ Data were organized by NVivo qualitative data analysis software. The analysis was carried out by three researchers (A.O., M.M., and K.B.) and comprised four steps. In step one, each interview was reviewed several times to gain an overall impression, while step two focused on dividing interviews into meaning units before labeling them with a code. Step three involved comparing and sorting the codes into subcategories and categories and in step four, the overall themes were identified. A.O. carried out the four steps, while M.M. and K.B. contributed with consensus on the categories and themes from step three to four by reflecting and discussing data and interpretations. The analysis subsequently involved going back and forth between the whole and individual parts of the interviews to provide a description of the categories and themes that closely mirrored the content of the data.^30,31 Examples of the analytical process are provided in Table 3.

Table 3.

Examples of the Analytical Process from Meaning Unit to Theme

Theme	Category	Meaning unit – Participant Quotes
Being the black sheep – experiences of being young in an adult environment The significant nurse – experiences of the essential relationship between AYAs and the nurses The wounded body – experiences of how the changed physical body affects the mind	Being the black sheep Social environment Physical environment Contact with the nurse Communication with the nurse Changes in physical appearance	“I felt like people were looking at me like I was a black sheep. Like, what's she doing here?” (Participant 1) “You felt like everyone's eyes were on you.” (Participant 4) “I needed someone to talk to, so I didn't feel so lonely.” (Participant 5) “I definitely think it's nicer to share a room with a young person, because you can talk together and have something in common” (Participant 14). “Would've been nice if it weren't so depressing, that you didn't constantly think about being in the hospital and that it was a little cozier with plants and things. More homey.” (Participant 7) “I don't think that people understand just how much pleasure young people get out of a PlayStation. You get 100% absorbed by it, which blocks everything else out of your mind.” (Participant 13) “When everything happens boom, boom, boom, it's unpleasant.” (Participant 3) “Well, you talk about something else, so you don't just see them [HCPs] when they're there to do something.” (Participant 15) “I knew the staff at the oncology unit better and was able to talk with them better.” (Participant 14) “If you talked more about daily life, then you felt more like you had a normal everyday life, as opposed to them talking every day about how many pills to take and things like that. I missed talking about normal stuff that made me feel like a teenager.” (Participant 6) “You want a nurse who can make you smile to make all the pain disappear.” (Participant 11) “I'm used to being able to cope with stuff on my own and being in control. For example knowing what you're going to see when they remove the bandage. I've become a bit of a control freak. You want to know.” (Participant 2) “I had a hard time with it in the beginning just after the operation. I wasn't able to deal with it at all.” (Participant 4)

Results

The analysis resulted in the identification of three main themes: (1) being the black sheep, (2) the significant nurse, and (3) the wounded body.

Being the black sheep – experiences of being young in an adult environment

Participants were generally satisfied with the care the surgery clinics provided. They did mention, however, that the surgery clinics were not designed for young people compared to what admission to the oncology clinic was like. They felt that the oncology clinics possessed greater knowledge about young people with cancer and that the nurses embraced a youth-friendly approach: “Oncology is most definitely better at young people. I think it's because of the knowledge they [HCPs] have. I don't know, maybe taking a course might help” (Participant 9). The young people were treated as adults and demands were made that could be difficult to live up to: “You were expected to be able to handle more without complaining. You were expected to endure more stuff” (Participant 14). The participants said that the approach surgery clinics took toward young people, and the information provided, indicated that the staff was used to caring for older people. This resulted in feeling out of place. Being the sole young person at a surgery clinic only reinforced the feeling of being hospitalized in the wrong place, of being a conspicuous black sheep. The duration of the admission played a role in how much the young people missed having contact with peers. AYAs hospitalized for a longer period longed for contact with other young people. Participants who had shared a room during previous hospitalizations with another young person in a similar situation spoke about how that had helped provide a feeling of community and of being connected and understood: “We were able to talk about having a breast removed, for example, so you could put yourself in each other's place and talk about personal things” (Participant 10). Likewise, to shift the focus away from their illness, it was also important to be able to discuss common interests and have a good time together.

Although the participants did not have any special expectation toward the physical surroundings in the surgery clinics, they nonetheless described them as cold, depressing, and not homey, which contributed to feeling like a black sheep in a foreign environment. Warm colors, pictures on the walls, and activities like PlayStation, games, and TV were requested to help keep negative thoughts at bay and reduce the hospital atmosphere and the feeling of being out of place.

The significant nurse – experiences of the essential relationship between AYAs and the nurses

Participants recounted how a good relationship with the nurses in the surgery clinic played a decisive role in how they perceived their hospitalization. The participants differentiated between nurses who were present and created a sense of trust and security and those who did not. If a trusting relationship was absent, the young people had no desire to share their needs. A lack of presence was viewed as a lack of care, with several participants indicating that they simply felt like just another cog in the system and as part of an assembly line: “It was a process. There was zero sense of presence” (Participant 5). The participants desired close contact with the nurses because they otherwise felt alone and forgotten. When the nurses offered the young people their time, it increased their sense of security, while giving them the opportunity to share their thoughts and needs with them. The participants did not wish to bother the nurses, which is why it was essential that the nurses initiated contact and communicated that they had time available: “It's crucial that nurses independently show an interest in speaking with you because then you know that they have the time for it. It felt uncomfortable to reach out to a nurse to say, could you please listen to me because I have some things I'm struggling with” (Participant 9). The participants wanted to spend more time with the nurses and on aspects other than practical tasks because mental issues dominated their thoughts: “Mentally, it's been brutal. You feel stuck, torn away from your familiar surroundings, which I think is a difference between being older and younger. The physical aspects haven't taken up a great deal of space in my head. The greatest challenge has been dealing with my thoughts” (Participant 4). Speaking with the nurses, however, was often not possible at the surgery clinics.

Conversations about life outside of the hospital helped to maintain a sense of normality for the young people, while they were admitted to the surgery clinic. The participants wanted to discuss ordinary life, for example, friends, their interests, work, and school which also comprise an area where the nurses took on significance. Small talk was also mentioned as a tool that could help draw the focus away from their illness. They explained that not all nurses had the ability to meet and understand them as young people. They felt that the nurses in the surgery clinic were not used to communicating with AYAs, resulting in situations where the young people became insecure and nervous and/or felt uncomfortable: “The surgery clinic doesn't often see young people, making it difficult for them to know how to talk to me” (Participant 7). Taking a humoristic approach was highlighted as a ray of light in an otherwise difficult time. They liked it when the nurses were lively and applied humor in their communication as this helped to keep their negative thoughts at arm's length.

The wounded body – experiences of how the physically changed body affects the mind

Surgery leads to physical changes and the participants described how preparing for the postoperative physical changes was crucial to preparing mentally, emotionally, and socially. Mentally preparing helped to give the young people a sense of control. Control was critical when the participants had to surrender their bodies to surgery, as they experienced that their cancer diagnosis had taken their sense of control away from them. At the same time, being confronted with the physical changes after the operation was difficult: “The first time I underwent surgery, I couldn't even look at it at all. It's extremely rough for such a young body. I couldn't recognize myself at all” (Participant 10). The young people felt that their physical and mental boundaries had been crossed. A few of them said that they were not prepared to see the changes in their body, but had felt pressured by the nurses to confront them before they were emotionally ready. Unable to recognize themselves and feeling uncomfortable in their new body, they wanted the staff to provide support. Since physical changes were not a topic that was usually touched upon, participants felt that they had to deal with this aspect on their own. They described various coping strategies, such as keeping one's head high and thinking positively, which were tools that they did not necessarily have experience with, making it difficult to mobilize them on their own. As a result, it was not possible for the participants to maintain an optimistic, positive approach; they also had the need to grieve: “I have scars on my body and my soul, but they also tell a story … I've been through something difficult” (Participant 1). The participants who had previously been through surgery described how acceptance and becoming used to their altered body often took place in time as their mentality changed.

Discussion

Our findings provide important insight into the needs and care experiences of AYAs treated for cancer in adult surgery clinics. We found that it was taxing for AYAs with cancer to be hospitalized at the surgery clinics, even if the length of their admission was relatively brief. Their psychosocial needs were not adequately met, and they felt out of place due to a physical and social environment that was not developmentally appropriate. Previous research has indicated that AYAs in adult wards feel that they are in the wrong environment.^{14,20,32–35} Studies have shown that it may be stressful due to a lack of life experience in coping with exposure to seriously ill older people.^14,36 AYAs with cancer, however, can experience a strong relationship with peers who have cancer, research demonstrating that these relationships offer psychosocial benefits.^14,21,37,38 The participants in our study stated that they would rather be treated alongside patients of their own age, but that they rarely encountered other AYAs during their hospitalization.

AYAs with cancer have expressed a wish to be treated like adults, but nonetheless need some of the privileges and time that younger children receive.^21,39 In our study, AYAs mentioned that the nurses did not seem to be familiar with AYA patients and that they encountered adult demands and expectations that they were unable to manage. Research suggests that the inadequate approach of HCPs toward AYAs stems from uncertainty and limited knowledge due to a lack of training, while unsatisfactory facilities and an absence of guidelines on age-appropriate care hinder provision of the most suitable help.^40–44 Caring for AYAs is not the same as caring for older adults, and without greater training and awareness, HCPs may not grasp age-specific differences.⁴⁴

Previous studies showed that the approach of HCPs toward AYAs with cancer is crucial to how they experience distress and health-related quality of life during cancer treatment.^{13,15,23,24,35,45}

Our study participants pointed out the significance of nursing care, stating that the nurses' approach and communication skills had both a negative and positive impact on their stay. Building a trusting relationship with nurses was fundamental to whether AYAs shared their thoughts and needs. Research indicates that the ability to develop and maintain a meaningful relationship with AYAs is generally a challenge for nurses, particularly when AYAs are unwell or in crisis. AYAs who face life-threatening conditions such as cancer place significant stressor on those involved in their care.⁴⁴ Although communicating with AYAs with cancer is an interdisciplinary responsibility, nurses are the ones who predominantly spend time with and talk to AYAs in the surgery clinics, which means they have a golden opportunity to support and assist them.⁴⁴ HCPs used to communicating with adults often find it difficult to adopt the different style of communication necessary for AYAs.^21,44 Our study found that confidential conversations with nurses were not always possible and the nurses often failed to take advantage of the golden opportunity to create a trusting relationship. Little research is available on the skills professionals require to work with AYAs with cancer, but some tools and guidelines have been developed to help standardize age-appropriate care and assist HCPs.^{1–3,44,46–49} The HEADS assessment contains key questions concerning psychosocial issues that may provide insight into the AYA's situation and needs, while also helping to create a trusting relationship.^44,50 Guidelines can assist nursing staff when addressing physical changes and body image, particularly crucial when caring for AYAs in surgery clinics. Changes in physical appearance can be particularly distressful for AYAs with cancer when establishing their identity and body image, which means supporting them in managing their body image concerns is an essential component of psychosocial care.^49,51,52

The results of our study indicate the necessity to promote developmentally appropriate care and facilities in surgery clinics in the future. The increasing focus of oncology and hematology on AYAs with cancer should be extended to include AYAs undergoing cancer surgery; our study indicates that increased attention is also required in this context.

Methodological considerations

The qualitative interview is an appropriate method that provides insights into the significance of the studied phenomenon.²⁸ Fifteen AYAs provided rich descriptions of their needs and care experiences when treated for cancer in surgery clinics. To minimize the risk of recall bias, participants were interviewed shortly after discharge. Most of interviews were not conducted where the participants were hospitalized to minimize the risk of social desirability bias.

Interview data can be interpreted in multiple ways.²⁹ Thus, our interpretation represents one possible reading of the needs and care experiences of AYAs treated for cancer in surgery clinics. To enhance trustworthiness, three researchers (A.O., M.M., and K.B.) took part in the analysis, discussed the results, and reached a consensus.

Participants were strategically selected to enhance maximal variation and increase the credibility of the results.^29,53 Some of the limitations of the study are that participants were predominantly female and only one had been admitted to the Department of Neurosurgery and only two to Surgical Gastroenterology, which must be considered regarding the transferability of results. Moreover, the study population is broad in terms of age, types of cancer, and surgical specialty. The existence of common themes, however, can be considered a strength, and we believe that our findings are unique and should be considered when rethinking the clinical care of AYAs with cancer hospitalized in surgery clinics.

Conclusion

AYAs with cancer have psychosocial needs that are not being adequately met during surgical hospitalization. Support beyond practical tasks and clinical care was rarely experienced and AYAs felt out of place due to a lack of developmentally appropriate care. Our findings shed light on the importance of initiatives to improve psychological and social well-being for this vulnerable patient group. Our study, which provides important insights when considering future age-appropriate initiatives and interventions, indicates that AYAs with cancer hospitalized for treatment in surgery clinics require greater attention in the future.

Footnotes

Acknowledgments

We would like to thank all the participants who took the time to share their experiences. We are also grateful to the health care staff who helped recruit the participants and for our collaboration with the Departments of Cardiothoracic Surgery; Orthopaedic Surgery; Urology; Otorhinolaryngology, Head and Neck Surgery & Audiology; Plastic Surgery; Neurosurgery; and Surgical Gastroenterology at Rigshospitalet, Copenhagen University Hospital, Denmark.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This research was made possible due to funding from the Capital Region of Denmark, TrygFonden (grant number: 145973) and The Heart Center, Rigshospitalet, Copenhagen University Hospital.

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