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Original Article

Caregivers’ perception of psychosocial issues of pediatric patients with osteosarcoma: an exploratory study

Shunmugasundaram, Chindhu; Veeraiah, Surendran

Author Information
Journal of Psychosocial Oncology Research and Practice: March 2020 - Volume 2 - Issue 1 - p e15
doi: 10.1097/OR9.0000000000000015
  • Open

Abstract

1 Background

Osteosarcoma is a common type of bone cancer that includes malignant tumor of the bones that people of any age or gender can develop. Osteosarcoma mainly affects children and young adults between the ages of 10 and 30 years.[1] It has been found that osteosarcomas also occur in adults over 60 years of age.[2] Literature shows that boys are affected more than girls; studies have found that more girls aged below 15 years are diagnosed with the disease when compared to boys in that age group.[2] In Chennai, a city in the southern part of India, between 1991 and 2001, 26 osteosarcoma cases were registered, making it a rare cancer and their 10-year survival was almost 44%.[3] Advancements in treatment have resulted in a prognosis of 40% to 60% 5-year survival for most patients with primary limb disease.[3] Treatments for osteosarcoma include adjuvant therapy, limb salvation surgery, amputation, or reconstructive surgery.[4]

An osteosarcoma diagnosis and treatment can have an effect on a patient's psychological, physical, and functional outcomes.[5–7] Physical discomfort after treatment procedures includes phantom limb sensation, non-union of bone, infections of prosthesis, prosthesis mal-alignment or dislocation, bleeding, loss of joint function, stump overgrowth, systemic complications, or prosthetic failure.[6] Most common psychological concerns following diagnosis and treatment for osteosarcoma included, lowered quality of life (QOL), depression, substance abuse, pain, psychological distress, low body image, and low self-esteem.[7–11] Assessment of functional outcomes in osteosarcoma patients is complex as a result of the interplay between psychological and physical factors. Survivors of osteosarcoma were twice as likely to be unemployed than those without a cancer diagnosis.[5,6]

A cancer diagnosis involves multiple stakeholders who serve as providers of care for patients diagnosed with the disease and this may include physicians, clinicians, nurses, allied health professionals, family members, friends, and acquaintances. Previous studies have found that caregivers spend approximately eight hours providing care while 25% percent of them spend >16 hours providing care.[12] Caregiving is multifaceted and could range from assisting with everyday activities, managing symptoms, providing logistics such as coordination of care, transportation, food, assistance with seeking information from the medical team, managing paperwork related to insurance, etc.[13,14]

Primary informal caregivers of all cancer patients (family or friends) may experience caregiver burden resulting in negative psychological, social, and physiological well-being.[15] Caregivers of children (who are usually parents) are not prepared for their roles of caregiving and hence feel more burdened than caregivers of older adults with cancer. Children with terminal illness such as cancer have increased demands that often result in caregiver guilt, psychological distress and lowered family functioning.[16] Furthermore, culture plays a major influence in coping, communication, and general perception.[17] Hence, in countries such as India, it is not rare for parents of children with cancer to cope using spiritual and religious values and view cancer as one's destiny or God's will. Families also find it challenging to communicate with their children (and vice versa) about the disease or treatment and find ways to evade related topics.[18,17]

Communication between parents and their children is influenced by culture, thereby making it difficult for parents to understand the challenges children with cancer experience.[19] Hence, this study explored how patients perceive the psychosocial issues of their children (diagnosed with osteosarcoma).

2 Method

An in-depth interview using a semi-structured interview schedule was used to elicit information from caregivers of patients with osteosarcoma about psychosocial issues that the patients were experiencing. Participants were asked to take part in an interview when they accompanied their children for follow-up to the out-patient department of the regional cancer centre in Chennai. A convenience sampling method was used for this study. A funnel approach method was used to elicit responses from the participants. The funnel approach entails commencing an interview with broad topics such as introduction, participant demographics, treatment status of care receivers, etc and then progressively narrowing to the area of the subject matter applicable to the objectives of research. In-depth interviews were transcribed verbatim and analyzed.

2.1 Participants

The sample comprised primary caregivers of patients diagnosed of osteosarcoma who with osteosarcoma who were presently survivors in follow-up care (aged below 17 years of age, any gender, age, disease staging, prognosis and socio-economic status); those caring for patients from the time of diagnosis or have involved themselves to some extent in giving care for the patient; caregivers of those patients who have completed treatment; consented to participate in the study; no prior history of mental health problems among the caregivers or their children; participants who can speak Tamil or English; caregivers of patients treated at the regional cancer center-Cancer Institute (WIA) in Chennai and caregivers of those patients who did not have a relapse of the disease. Information on mental health problems was gathered from medical records and clinical staff by the researcher during recruitment.

2.2 Semistructured interview schedule

Questions in the semi-structured interview were based on literature, researcher's experience, observation, and interaction with caregivers at the study site. Questions were given to experts (psychologists, oncologists, and researchers) to assess face validity and appropriateness. The interview schedule consisted of four main questions to guide caregivers to talk about psychosocial issues their care-receivers were facing. Questions were: “How is your child's condition now?”; “What are the problems that he/she faces after the treatment?”; “What about the psychosocial issues he/she is likely to face in the future?”; “What is your take on how she is going to feel/ is feeling?.”

Based on the first few interviews, the researcher incorporated a few more questions. Questions included later were: “Details about his/her involvement in daily chores’; ’How does the society perceive your child now?”; “How do you perceive your child's future to be?.” Those participants who weren’t asked questions were telephoned for a second round.

2.3 Data collection and analysis

The researcher approached parents who were primary caregivers of pediatric patients with osteosarcoma on follow-up between June and August 2013 and recruited for the study. Twenty-eight (28) primary caregivers were approached. Fifteen (15) met eligibility criteria and eight consented to participate in this study. Caregivers who consented were provided with an explanation about the study's significance and objectives. After obtaining informed consent, interviews were conducted. At the end of seventh interview, saturation was achieved but the eighth interview was conducted to make sure saturation was fully achieved and no new information emerged.

Interviews were audio-taped, transcribed, and translated from the local language to English. Transcripts were then reviewed and analyzed by both the authors (CS and SV) to ensure accuracy. Line by line coding was performed independently, differences were discussed, and consensus was achieved between both authors. There were no predefined themes or codes which were taken into consideration during analysis. Based on coding, themes were identified. Transcripts were analyzed using content analysis. Content analysis is a method that involves evaluation and interpretation of any form of information to make inferences. To ensure rigor, analysis of data was based on grounded theory.[20]

3 Results and discussion

Cultural perceptions about cancer in children and their experiences most often emerged from parents belonging to the Asian culture. They reflected on how they thought their children (who were diagnosed with osteosarcoma and underwent treatment) coped. Findings from this study do not represent any one individual or a collective group of all South Indian parents, the study explores, describes and represents several perceptions derived from those participating in this particular study. Seven themes represented what South Indian parents perceived as common psychosocial issues in osteosarcoma patients and they are discussed below.

Participants in this study who met the said criteria included 8 caregivers (six males and two males) with ages ranging from 30 to 47 years (m = 35.8 years) for children with ages ranging from 11 to 18 years (m = 14 years). The average time taken for each interview was 45 minutes. Table 1 shows participant characteristics.

Table 1
Table 1:
Participant characteristics

Caregivers were those of osteosarcoma patients who were from 1 to 5 years post-treatment. Of the six female caregivers, five were unemployed and stay-at-home mothers and one was working as a software engineer. One of the two males was an entrepreneur and the other was a daily wages employee. All the caregivers belonged to Hindu religion.

Seven themes emerged from analysis. Themes that were coded, analyzed, and identified from the interviews were: 1. Effect of treatment and disease, 2. Uncertainty, 3. Future concerns, 4. Effect on education and activities, 5. Restricted functioning, 6. Stigma, and 7. Social relationships. Issues that emerged as themes either belonged to the present situation of patients or those issues concerning their future.

4 Effect of treatment and disease

Initial reactions to the effect of treatment and disease were a mix of distress, fear, curiosity, worry, and anxiety. Parents saw their child suffer, assumed that they would also undergo what the other children suffered resulting in perceived fear. They heard questions about fertility, repetition of treatment, and symptoms of treatment.

Some excerpts from the interviews:

Will chemotherapy impair with his/her fertility?”

Will limb salvage surgery be repeated every few months until she/he is alive?”

Does my child require medication to prevent this disease from spreading further all through their life?’.

I’m too scared when chemo was given because my daughter tends to become very weak after every chemo. Her TC count goes down, she falls sick, she cannot eat, she will faint and fall, she cannot even stand on her own. From what I have seen, other patients even have discoloration of the skin and it scares me. Will this discoloration reverse back to normal tone? I have so many unanswered questions about her treatment but I am too scared to ask.”

One mother spoke,

I feel really bad when I see other kids with two hands and then when she is standing, she has only one hand. Even though I feel really bad about it, I don’t express my feelings to her. I will joke around when I’m with her. Even her sisters ask if she will get a limb and I also know that a prosthetic limb cannot equal a real limb but still I manage to convince all of them. She even asks me how they would fit an artificial limb when she doesn’t have a shoulder, but I have assured her that it can be done.”

Excerpts showed how parents generally suppressed their emotions and queries within themselves. This clearly represented that parents of children with cancer experienced high levels of anxiety, fear, distress, and adjustment problems.

4.1 Uncertain prognosis

Most participants appeared to perceive that there could be nothing worse than an uncertain prognosis in children with osteosarcoma. They seem to have understood the complex nature of this disease and why medical practitioners do not give false promises. However, caregivers were usually distressed when they have no certain answer about prognosis.

As said by one parent,

She keeps asking me after every chemo if she will become completely alright after all the chemo cycles are over and I cannot tell her that I don’t know, so I give her hope by saying she will become completely alright. It is distressing for both of us.”

Another said,

I’m very worried. Seeing so many patients come back with relapse is really scaring me.”

She cried a lot today morning and she asked the doctor if we could go home and never came back.. Will she be cured from this disease or not? I have not gotten a clear and confident answer from anyone so far. I am tensed.”

Some participants feared whether there were curative treatments available for osteosarcoma. Having witnessed the relapse of other children, parents felt no reassurance that their child would cross the 5-year survival mark. They were anxious during every follow-up scan and doctor's appointment.

Participants discussed about generally feeling distressed, responsible, and guilty when their children asked them about prognosis or health condition in general.

4.2 Future concerns

One of the most common concerns among caregivers was about their child's future. The main worry that kept their minds preoccupied all through their care receiver's cancer journey was a concern about disease recurrence, resulting in anxiety and distress. Participants discussed an increase in distress and anxiety when they saw any small symptomatic change in their care receiver's physical condition. They also discussed that other common concerns regarding future were education, marriage, and family life.

Some excerpts from the interviews:

The major problem is if she would get this disease back. What will she do after I die?”

I always fear if the disease will come back to her. This fear in me increases especially when I see other patients coming back with a relapse. That is when even she asks me if she will die, it is a very hard time..”

She thinks she cannot do anything in her future such as studying, being like how she used to be, running, and even climbing stairs. I don’t know what she will do after me and my husband die.”

Thinking about future will only scare me more. I prefer not to think about anything.”

Every time we come for follow up I fear if he will have a recurrence of his disease.”

Caregivers also discussed concerns about being in suspense (uncertainty), assuming all possible consequences so that they could be prepared to face the worst during follow-up appointments, and about handling their hyper-vigilant thought processes.

4.3 Effect on education and activities

The most common response from caregivers about psychosocial issues for their children after cancer treatment was about disruption in education.

Caregivers discussed concerns about patients missing out on social and school life due to the disease, treatment and side effects from treatment. Their children have had to repeat a class resulting in them studying with their juniors or change schools to give them a new environment. Hence, it was quite common for children with cancer to miss out on regular education until a certain period post-treatment.

One participant, mother of a 16-year-old girl, said,

This year she should have written her public exams but she couldn’t..She wanted to study Computer science in... university, she thinks she cannot do anything in her future such as studying, being like how she used to be, running, and even climbing stairs... I’m suggesting distance education but she has no hope of going back to studying.”

Another participant, mother of a 12-year-old girl who was in follow-up, said,

Main problem is her surgery...Doctors are saying it has to be done for another 7 years. During her surgery once every six months, she has to miss school for at least a month every time, this will disrupt her education.”

The father of a 14-year-old boy who is on follow-up spoke about education, other leisure activities, and sports that his son was missing. His exact words were,

He is going to the same school but is in a lower class which is definitely making him feel bad because he is studying with his juniors. He used to be a very good cricketer and a great athlete but now he can’t play any games. He even used to play basket ball.”

The process of getting through with the disease and treatment is a tough task, as, the overall functioning of the child will most likely be affected. From the excerpts it is clear that most children have been affected because of having to miss school, and other activities, whereas some children have been affected by not being able to play with friends as before or participate in activities that they were good at.

4.4 Restricted functioning

Almost all parents or caregivers worried about their child's restricted functioning as a result of amputation or limb sparing surgery. Irrespective of the type of treatment, it was discussed that, in the first place, children found it difficult to adjust to restricted functioning, and second, parents felt additional responsibility, thereby worrying all the time.

Few excerpts from the interviews,

He should be more careful while walking or running because nothing should hurt his leg or he should be careful of not slipping and having fall”

He cannot be taken to any social functions...He used to be extremely playful until before he was diagnosed, but now after treatment he will have restricted movement and functioning of the limb”

With her crutches, she is still adjusting herself to walk on her own but she is unable to do it. For everything, she has to depend on me because she needs someone to hold her for support”.

The mother of a 15-year-old girl, whose left hand was amputated, said,

She needs my help for everything because she does not have one arm..the worst feeling comes to her when she is restricted to do all that she used to. It will be hard for her to dress up all by herself, groom her hair, etc.”

Caregivers appeared to think that there could be no childhood cancer worse than osteosarcoma because of the treatment involved. They discussed having nightmares related to their child's restricted functioning outcomes and being worried how they would be dependent on someone all through their lives because of it.

4.5 Stigma

Caregivers agreed that stigma related to cancer was common among their communities and that they were not comfortable speaking about cancer to their family and friends. Although they received a lot of family support, they found it difficult to face their community as a result of their child's treatment related disabilities (limb sparing or limb loss) and poor functioning. They found it extremely exhausting to return to a normal life by explaining to others what had happened or rekindle lost friendships and relationships. They talked about how their children keenly observed how others saw them and did not appreciate pity, sympathy, avoidance, or any sort of negative emotions.

A small number of caregivers feared their child may be discriminated by their own family members or community and were unsure how their children would cope with it.

Few excerpts from the interviews conducted:

People will pity her because she doesn’t have one hand”

He asks me if villagers from our native will isolate us and not let us live in the same village..Sometimes he suggests of relocating to some other place after the treatment”

Even in our neighborhood, everyone has gotten to know about her disease..People in our village have lots of stigma so I have thoughts of relocating.”

She's still not able to walk properly, she will limping and also experiencing pain because of that. When she limps, everyone around her are looking at her pitifully. Everyone including me as well.”

“I don’t know how the society would see him. Sometimes even he asks me if his cousins who are of the same age as him and with whom he used to play before, would take him back if he goes after treatment is completed. ”

“His friends who used to play with him are also conscious not to take him when they play fearing if he would have a fall. Now, he's only watching his friends and brother play. This is really taking a toll on his emotions. He's feeling inferior of them and has low self-esteem. I also find it tough to talk to other kids about including him while they play because later if he gets hurt by mistake, I don’t want to feel guilty or take the blame”

Caregivers found it difficult to request that their children's friends include them during play or modify play based on their functioning abilities so they did not feel left out or incapable.

4.6 Social relationships

Participants discussed how their children might be concerned about what their close friends would think about them or if they could still be a part of their “clan”. They felt that if this was resolved, then it would be easier for them to resume life like before, although they understood it would not always be possible because their kids might lose some friends and make new ones. Caregivers appeared to think that their children were less satisfied with their interpersonal relationships post-treatment.

One of the participants said,

“His friends are all trying to be the same to him but they are more conscious not to ask him for anything and it makes him uncomfortable”.

Another said,

“I have tried to make her talk to her friends. She does not want to talk to them over the phone, nor meet them. I hope she gets through this phase soon.”

5 Discussion

This study explored caregivers’ or parents’ perception of psychosocial issues in pediatric osteosarcoma patients who are receiving follow-up after treatment completion. Results discussed above depict the negative impact osteosarcoma could have on there patients. Major characteristics of childhood tend to be more or less disturbed during their journey with cancer. Every child is unique and they react according to their age, illness, lifestyle, and way of thinking and behaving. The journey through cancer, starting from first consultation till follow-up post-treatment, can be stressful. This experience might force children and their caregivers (parents or other family) to feel insecure, question the meaning of their lives, values, and objectives.[12,21]

Prior research has suggested that South Asian communities have limited awareness related to cancer and its treatment. Findings from this study suggest that concerns in pediatric osteosarcoma patients were stigma, uncertain prognosis, limited or restricted functioning, impact on social relationships, and impact on education and leisure activities. Identified concerns hold important implications for developing and structuring health promotion interventions. For pediatric patients, language should be given utmost importance, and outcome could focus on improving communication between patients and caregivers.

The core themes that emerged from the interviews were: 1. Medication and treatment effects, 2. Uncertain prognosis, 3. Fear of uncertainty, 4. Effect on education and activities, 5. Restricted functioning, 6. Social stigma and isolation, and 7. Social relationships. Sub-themes are all hidden in the core themes and constitute those issues that are evident during treatment and those that are likely to make a mark in the future. Those that were present during treatment were: stress, physical weakness, and reintegration with normal life and school functioning and those issues of the future were: fear of disease recurrence and death, anxiety, low self-esteem, body image issues, coping, and adjustment problems.

Stigma in cancer has been discussed in detail in the literature and in a country like India with ethnically diverse population and several different cultures, stigma could be more prevalent. People generally find it difficult to talk about cancer within their own communities. According to one of the parents, “it is not easy to listen to the word cancer or even talk about it within the family, between my wife and I; and we fear to even say that word; it is bad.” Some caregivers talked about how their neighbors and family members would not allow their children to play with children diagnosed with cancer just because they were diagnosed with cancer and treated. One caregiver talked about how his spouse's parents were not informed of their child's diagnosis because it would worry them or make them further distressed. It was also discussed that communities or extended family members could talk about their child's cancer diagnosis as a form of punishment from God or a sin that was carried on to them from their ancestors.

Parents or caregivers are unprepared for this sort of a stressful experience, which plays a major role in hindering their capacity to think or understand completely about the disease, treatment, and its effects, both immediate and late. Uncertainty is common in cancer care, especially when it comes to treatment and prognosis. Treating physicians usually only talk in terms of chances and do not give promises to parents or patients. Since cancer is a complex disease it is difficult for any medical practitioners to predict the exact prognosis of the patient. This uncertainty increases anxiety among parents who are usually the primary caretakers of children with cancer. Parents worry about their children coping through treatment, reaching the end of treatment, and about relapse.

After planning treatment, oncologists start the treatment and then in between monitor responsiveness. However, it makes it difficult for them to confidently predict the prognosis of patients. This was one of the major concerns of participants; participants felt that they were answerable to their child after a treatment cycle or procedure, and were distressed when they had no certain answers for those who desperately wanted updates on their health status. When patients want to know about their health and parents could not tell them with certainty, their psychological stability could be shaken leading to increase in the levels of anxiety and distress.

Literature reports that the impact of an osteosarcoma diagnosis involves long-term effects on all facets of life– physical, functional, and psychosocial [5–8,10,11]. The functional status of osteosarcoma patients is adversely affected thereby worsening psychosocial issues.[5,6] Amputees and those who undergo limb sparing surgeries cannot walk, run, or move as before.[1]

6 Limitations

This study has certain limitations. First, despite reaching theoretical saturation, findings from this study may not be generalized across the country as they are derived from only eight participants and confined to one medical centre. India is a multicultural country with a diverse population. As recruitment for this study was done in only one state, it is important to interpret the findings with caution because of the presence of various communities in one state. Third, there could have been an interaction of extraneous variables such as financial or emotional burden on responses.

7 Implications

Themes uncovered in this study could be a first step paving ways for future studies to prospectively investigate from patients directly. Interventions can be designed to focus on identified problems and thereby lessen psychosocial concerns. However, there is an urgent need to explore the awareness deficits surrounding osteosarcoma among caregivers (parents) and patients. Understanding barriers and facilitators is important while developing targeted assessments and interventions.

Personal statements from caregivers create an opportunity for health care professionals to comprehensively understand the impact that osteosarcoma could have on patients. Clinicians should pay attention to the psychosocial issues of osteosarcoma patients along with their provision of oncology care.

8 Conclusions

Perceptions about cancer and its journey vary with each individual, their culture, and socioeconomic status. This study explored caregivers’ perception of psychosocial concerns in pediatric osteosarcoma patients. Themes identified were: 1) medication and treatment effects; 2) uncertain prognosis; 3) fear of uncertainty; 4) effect on education and activities; 5) restricted functioning; 6) social stigma and isolation; and, 7) social relationships. Similar to past studies, findings from this study indicate that osteosarcoma patients had poor functional outcomes, and found it difficult to manage social settings. It is essential to study caregivers’ thinking process to help them communicate openly. Patients with cancer (irrespective of their ages) require optimal holistic care to have good quality of life outcomes.

9 Conflicts of interest statement

The authors declare that they have no financial conflict of interest with regard to the content of this report.

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Keywords:

Caregivers; Coping; Osteosarcoma; Psychological concerns; Qualitative study

Copyright © 2020 The Authors. Published by Wolters Kluwer Health Inc., on behalf of the International Psycho-Oncology Society.