Exploring the impact of brain cancer on people and their participation

Abstract

Introduction

Brain cancer diagnoses are rising, and the prognosis is commonly life-limiting. Brain cancer symptoms and the side effects of treatment are imposing and harmful. Little is known about the effect of these symptoms and treatments on occupational participation or about the role that occupational therapy can play for people with brain cancer.

Methods

Sixteen participants with brain cancer were purposively recruited from a single site. Data was collected using semi-structured interviews. Interviews were analysed thematically.

Results

Three overarching themes were identified: (a) ‘there’s a lot of things that I can’t do anymore’: adverse effects of tumour and treatments; (b) ‘you adjust with adversity’: accepting altered occupational participation levels; (c) occupational therapy: ‘why is she here?’

Conclusions

Findings highlight a connection between brain cancer symptoms, treatment side effects and occupational participation. A disconnect was found between occupational therapy services and occupational needs. Further research could explore whether realigning occupational therapy services to address the concerns identified in this study leads to enhanced occupational participation through the journey of brain cancer.

Keywords

Oncology palliative care glioblastoma occupational therapy

Introduction

Approximately 264,241 cases of brain cancer are reported globally each year, with numbers continuing to rise (Leece et al., 2017). Glioblastoma is the most common form of brain cancer, and has the lowest five year survival rate at 22% (Australian Institute of Health and Welfare, 2017). Brain cancer produces a higher rate of functional loss, poorer quality of life and wellbeing, and a greater number of unmet care needs compared to other cancer types and has a profound impact on the person and their family (Janda et al., 2008). The aim of this research was to explore the impact of brain cancer on a person and their occupational participation, and to gain an understanding of people with brain cancer s experience of occupational therapy.

Effects of brain cancer

The effects of brain cancer extend beyond the symptoms and the effects of treatment, with physical, psychosocial and occupational impacts. Common symptoms include headaches, nausea, lethargy, seizures and fatigue, with further symptoms specific to the tumour location such as impaired vision, motor control, communication and swallowing. Neurocognitive and mental health problems can also be experienced (Petruzzi et al., 2013). Furthermore, brain cancer treatments have toxic side effects (Catt et al., 2008; McCartney et al., 2011). Fatigue is frequently reported as a serious problem of both cancer and treatment (Díaz et al., 2008; Kim et al., 2012; Pelletier et al., 2002; Silver and Gilchrist, 2011). In combination, these factors have a profound effect on daily life, impeding occupational participation and causing distress (Aaronson et al., 2011; Pelletier et al., 2002; Silver and Gilchrist, 2011).

Occupational participation concerns and occupational therapy

The current trend of longer survival rates increases the importance of understanding the impact of brain cancer on occupational participation and development of effective interventions (Yavas et al., 2012). Difficulty performing usual occupations and a need for support are commonly reported post diagnosis (Campbell et al., 2009; Janda et al., 2008). Occupational therapy has been found to be beneficial to people with cancer through its client-centred approach and focus on achievement of meaningful goals for the client (Pergolotti et al., 2016). Oncological interventions tend to concentrate on energy conservation and fatigue management, pain and symptom control including stress and anxiety management, and environmental or task modifications (Cooper and Littlechild, 2004; Penfold, 1996). However, there is a paucity of literature addressing the specific occupational therapy role in brain cancer. Despite this, emerging evidence from a small Danish study suggests that occupational therapy can achieve positive functional outcomes for people with brain cancer through collaboration, shared decision-making and common goal-setting (Hansen et al., 2017).

The Person-Environment-Occupation-Performance Model (PEOP) (Baum et al., 2015) offers occupational therapists a useful framework for exploring the impacts of brain cancer on occupational participation, and for developing, defining and evaluating the occupational therapy role with this population. The PEOP model describes how factors relating to the person, their occupations and environment enable or inhibit occupational participation (Baum et al., 2015). The far-reaching impacts of brain cancer and its treatment can be understood through the lens of this model, providing a foundation for development of occupationally focused interventions.

Brain cancer incidence and survival rates are rising, with devastating consequences for those diagnosed and their families. There are significant impacts upon occupational participation and wellbeing, but these have not been explored in detail, and occupational therapy’s potential for addressing these issues remains uncharted territory. This study forms part of a larger study which had the overall objective of determining the impact of brain cancer on a person and their occupational participation and wellbeing. However, this study specifically aimed to explore the impact of brain cancer on a person and their occupational participation, and to gain an understanding of people with brain cancer’s experience of occupational therapy. The impact of wellbeing will be discussed in a subsequent article. The research questions investigated in this study were: (a) How does brain cancer and treatment affect the person and their occupational participation? and (b) What are people with brain cancer’s experiences of occupational therapy?

Methods

A qualitative methodological focus was adopted, as this is a suitable approach for exploring an under-researched topic such as this (Creswell, 2014). A constructivist paradigm informed the research design, data collection and data analysis. Constructivism acknowledges subjectivity and the researcher’s role in constructing and interpreting data, as well as participants’ unique constructions of their experiences within their own context (Charmaz, 2014; Howell, 2013).

As the PEOP model (Baum et al., 2015) provided a theoretical framework for the study, informing development of the interview questions and providing a lens to guide data analysis, it was important to recognise and acknowledge this influence. The constructivist paradigm also provided a basis for recognising the co-constructed interpretations of participants’ experiences in the interview and data analysis processes (Charmaz, 2014).

Recruitment

Participants were recruited from a cancer care centre in Western Sydney, Australia, using purposive sampling. Multiple recruitment methods were used. People with a brain cancer diagnosis were identified on the cancer centre’s database by a member of the medical team and study information was mailed to people with this diagnosis. This information included contact details for the researchers, study information and consent forms, and an invitation to contact the researchers if interested in participating. Four researchers attended outpatient clinics, explaining the project to potential participants. Study advertisements were placed in waiting rooms and clinic areas with an invitation to contact the researchers if interested in participating. When a potential participant expressed interest in the study, a follow-up phone call was made to provide further information, explain ethical procedures and answer any questions. If the person wanted to participate in the study at this point, an appointment was made for an interview.

People were eligible to be included as participants in this study if they: had a primary brain cancer diagnosis; received treatment for their diagnosis at the recruiting cancer care clinic; were aged 18–85 years; and spoke English. Participants were excluded from the study if they had a secondary, or non-brain, cancer diagnosis, as the impact described may not have been directly related to the brain cancer and its treatments; were non-English-speaking or did not meet age restrictions.

Data collection

Data was collected through a single semi-structured interview with each participant. If the participant wanted a support person present, their nominated caregiver participated in the same interview. The interview followed a guide including questions about experiences of brain cancer, impacts on occupational participation, and any occupational therapy services received since diagnosis. These questions focused on participants’ person, environment, occupation and participation factors in these areas, as defined by the PEOP model. All interviews were audio recorded and transcribed verbatim for data analysis. Interviews typically lasted one hour and were conducted in a location of the participant’s choice.

Data analysis

Thematic analysis was employed and followed a theoretical rather than an inductive approach (Braun and Clarke, 2006). This approach to data analysis is driven by the researcher’s theoretical or analytic focus, rather than being a bottom-up approach driven by the data themselves (Braun and Clarke, 2006). In this study the researchers’ intent was to explore the occupational experiences of people with brain cancer utilising an accepted theoretical framework. It was anticipated that this approach would assist in developing recommendations for practice framed within an occupational therapy model, aiding the translation of findings into practice.

The steps in the data analysis were: (a) familiarisation with the data through reading and transcribing interviews; (b) generating initial codes which captured the meaning of data segments; (c) searching for themes by sorting and organising codes; (d) reviewing and refining the themes; (e) defining and naming the themes and (f) reporting the data’s unified story (Braun and Clarke, 2006). Data analysis was managed using NVIVO (QSR International Pty Ltd, 2015).

To ensure study rigour, researcher reflexivity, consensus coding and peer review of results were employed. Further, thick description of participant demographics and the study site enables readers to determine whether results are transferable to their own practice context.

Ethical considerations

Ethics approval was obtained from Western Sydney University’s Human Research Ethics Committee (H10944) and the Nepean and Blue Mountains Local Health District Human Research Ethics Committee (EC00151), prior to the commencement of the study. Non-coercive recruitment methods were used, and voluntary written informed consent was obtained prior to study participation. Participants were made aware of their right to withdraw at any stage. Participants’ identity was concealed from treating clinicians so as to avoid perceived coercion, with interviews being conducted by researchers external to the cancer centre. Counselling services were pre-organised in case of distress; however, they were not used. Privacy was maintained by de-identifying the data using pseudonyms and aggregating data during analysis.

Results

Sixteen participants, who self-selected their pseudonym, were interviewed about their experiences of brain cancer, its impacts on themselves and their occupational participation, and their experiences of occupational therapy. Thirteen participants were male, and three were female. Participants had a median age of 62 years (min = 44 and max = 75 years), and a median time since diagnosis of approximately six months (min = 22 days and max = 1885 days). Most participants were not working (n = 15) at the time of interview, and lived with at least one other person (n = 13).

All but one participants were current outpatients of the cancer clinic, with three receiving active treatment of chemotherapy, radiotherapy or both at the time of the study. Four participants received occupational therapy during acute inpatient treatment, while 12 did not. Where inpatient occupational therapy was provided, there was no community follow-up post discharge, except for one participant who self-referred to a private community occupational therapist. Of the 12 participants who did not receive inpatient occupational therapy, three were followed up by a community occupational therapist, and one was seen by an occupational therapist upon hospital readmission. Eight participants had not received any occupational therapy services at the time of interview.

Thematic analysis

Three overarching themes were developed through the analysis: (1) ‘there’s a lot of things that I can’t do anymore’: adverse effects of tumour and treatments; (2) ‘you adjust with adversity’: accepting altered occupational participation levels; (3) occupational therapy: “why is she here?”

‘There’s a lot of things that I can’t do anymore’: adverse effects of tumour and treatments

Collectively, participants reported a multitude of impairments arising from brain cancer and treatment. These encompassed cognitive, physiological, sensory, psychological, motor and spiritual aspects of the person. Cognitive effects included memory loss, concentration, recall and spatial awareness, as well as cognitive processing such as calculation, facial recognition and task sequencing. Donald reported spatial awareness problems when he walked into door frames and drove his forklift into walls. These problems were reported as frightening as they came without warning and caused a loss of control. After surgery, with ongoing chemotherapy and/or radiation therapy, mental sharpness was impaired, described as ‘chemo fog’ by Nicholas. Short-term memory loss was common and frequently permanent. Toura described it: ‘you hear it, but you don’t take it in’.

Physiological symptoms were prevalent, with fatigue being most common and having the greatest impact. Fatigue often occurred as a side-effect of chemotherapy and radiotherapy. Seizures were another commonly reported physiological symptom, with John stating, ‘I’m scared of bringing on a seizure now that I’ve experienced one or two’. For Noddy, seizures temporarily intensified arm spasticity. Seizures were observed to be linked to fatigue, with participants who reported the highest levels of fatigue reporting having seizures. Other physiological symptoms experienced included nausea, bowel and bladder dysfunction, loss of appetite, increased hunger, weight gain, weight loss, hair loss, oedema and sexual dysfunction.

The sensory disturbances participants experienced varied from minor to extensive. Participants reported blurred vision, phantom smells, metallic tastes and difficulty with proprioception. Limb numbness was also a common problem.

Participants described various motor control impairments, including difficulties with upper limb use due to tremors and spasticity, impaired writing and speaking ability, and difficulties with functional mobility, with some requiring mobility aids or equipment.

Spirituality was explored by most participants and was spoken about in terms of their sense of self. Brain cancer deprived participants of their independence and meaningful roles, notably challenging their spirituality in areas of self-perception and sense of purpose.

Adverse psychological effects were experienced as secondary to the physical, cognitive, physiological and sensory effects of brain cancer. Participants expressed their worry and frustration associated with the changes taking place to their functional capacity, occupations, roles and lifestyle, as well as their disease progression and life expectancy. Noddy had difficulty coping with the terminal nature of his diagnosis: ‘I’m dying. I can’t deal with it that easily’. For others, their fear was not death itself, but the impact it would have on their family: ‘I don’t want family to find me in a mess in a corner somewhere’ (Toura). Participants described feelings of guilt stemming from an increased sense of being a burden. Wizz’s guilt led him to withdraw from family: ‘I try and keep her away because it destroys her. It’s really hard for her, which makes it hard for me because I feel guilty’.

‘You adjust with adversity’: accepting altered occupational participation levels

The effects of brain cancer and its treatment required participants to actively adjust and accept their declining function to optimise their participation levels. These adjustments encompassed accepting the reality of diminishing independence, and accepting environmental supports such as assistive technology and assistance from their partner or family.

Person-factor impairments alter occupational participation

Sensory, physiological, motor and cognitive problems led to a wide range of occupational participation restrictions as participants attempted to engage in their meaningful occupations. For example, Noddy experienced right upper limb spasticity and low tone in his left arm, limiting his ability to prepare meals and drive his car. Mick found that his physiological symptoms restricted his participation in daily activities: ‘around the house, I find bending up and down challenging, I can get down no problem, getting up I’ve got to be careful … if I get up too quickly I get a bit dizzy’. Most participants also reported relying on assistive technology to mobilise and complete self-care occupations due to poor balance and weakness. Donald, for example, used a four-wheeled walker that enabled him to access his bathroom and complete self-care tasks independently.

Participants believed memory dysfunction restricted their ability to remain independent in decision-making and led to reliance upon their social supports. Toura believed that his decreasing cognitive function led to him losing the ability to independently manage his own healthcare, and he relied on his wife’s assistance in this area.

Leisure occupations were often discussed as an area of lost independence and lost meaningful participation, with blurred vision, fatigue and problems with cognition named as the common causes. Noddy was unable to concentrate to read a book, while Toura reported his memory loss impacted his ability to participate in his previously enjoyed hobby of fixing machinery. For example, he could no longer disassemble an object and remember how to put it back together. Participants regularly reported they required additional time to complete tasks and large amounts of rest, and were therefore unable to engage in physical tasks. For example, John stated, ‘I’ve had to tone so much of my lifestyle down so that I don’t fatigue out’, while Allen said, ‘There's a lot of photos that I want to go through and it would be nice if I could be awake long enough to be able to get through them’.

In regards to sexual engagement, Wizz explained how sexual dysfunction had affected his intimacy with his partner: ‘sometimes I can be a little bit slow, but that could be the medications too, and that hurts a little bit. But she understands, she just waits until I’m ready’. This change was difficult for participants to accept and led to a negative self-perception and occasional relationship strain.

Despite accepting the need to rely more on their environmental supports, a common concern for participants was the heavy impact their brain cancer had on their social supports, rather than on themselves. Toura stated: ‘Although this is an event in my life and it is an event that is happening to me, it is actually affecting a lot more people than what I expected’. Wizz agreed, saying, ‘Obviously, it’s affected everybody in the family … Yeah, it’s more unfortunate for my family’. Subsequently, expressions of guilt were common in participants’ reflections. Allen described the burden he felt he placed upon his wife: ‘my wife’s too tired after going to work and taking me to appointments and so on and so forth. Basically, looking after me tends to wear her out’.

Adjustment: an active process of managing effects of impairments on occupations

Priorities for, and approaches to, occupational participation were actively altered as participants adjusted to increasing impairments, although for some participants this was a challenge in particular areas. Productive occupations such as work remained important to those who had not been retired prior to being diagnosed, although adjustments were frequently needed. For example, John maintained his employment as he had a supportive employer who allowed him to modify his role to something more suitable. Despite the importance of work, a brain cancer diagnosis frequently led to losing employment or choosing to cease it. One participant said he was dismissed from his job because of his diagnosis and subsequent functional decline. Four others were not able to continue their work as their symptomology impacted their ability to adequately perform their role in terms of both performance and safety. Paul experienced aphasia, meaning he could not write or speak fluently, and said: ‘No, you couldn't survive in an open workplace like this because you’d be dragging things out too long’.

Despite this, all participants (except for those retired) valued the notion of re-engaging in productive roles. Nicholas stated, ‘I feel like a bit of a drain’ because of his inability to continue working, while other participants reported bargaining with employers to continue working. Overall, work was a social outlet and a means of keeping occupied as well as maintaining a provider role, which was important to participants’ sense of identity. As a result, participants strived to improve their health and fitness so they could engage in or increase their engagement in work.

Once work occupations were no longer possible, participants’ focus shifted to maintaining engagement in social and leisure occupations. These were perceived as a tool to fill time and give a sense of purpose. However, participants experienced difficulties with these occupations also.

I enjoyed going to work. Not being able to go to work is a very big change and not being able to do anything as a replacement at home is frustrating. But if I just had to stop work, being able to do something different at home would be good, but it’s stopping at work and stopping things at home. (Allen)

Restricted participation in social and leisure occupations were reported as the most difficult consequence of their diagnosis and treatment, and this was made worse when driving was ceased. It appears that this adjustment takes time, as participants with a more recent diagnosis (<4 months) were engaging less in social and leisure occupations compared with participants who were further along the brain cancer journey (>6 months).

Occupations related to closure and leaving a legacy became more important as the end of life drew nearer. These occupations, encompassing things such as putting one’s affairs in order, kept participants busy and offered a sense of control over their lives. Additionally, creating legacies motivated participants to keep living until their goal was completed. For example, George wanted to spend as much time as possible with his grandchildren so that he could develop stronger bonds with them. This motivated him to try to live for as long as possible.

Psychological adjustments were required as abilities declined and life expectancy shortened. Some participants repressed their negative thoughts with a resilient attitude: ‘You adjust with adversity’ (John). Noddy’s way of coping was to keep busy, which he could no longer do. He struggled with acceptance, and this affected his motivation to participate in leisure occupations, as well as in therapy to improve his abilities. Some participants focused on occupations that positively influenced their psychological and spiritual factors, while others placed less emphasis on this particular process of adjustment. For example, meditation was viewed by Nicholas and John as an effective method for calming and relaxation, whereas others, such as Noddy and Basil, disliked the process and did not engage.

Occupational therapy: ‘why is she here?’

Participants had varying experiences and perceptions of occupational therapy. These experiences were linked to environmental factors such as their access to services and understanding of the occupational therapy role, and the focus of the therapy they received.

Limited access and clarity surrounding the occupational therapy role

Participants expressed dissatisfaction about poor access to occupational therapy, particularly for outpatient follow-up. Toura stated, ‘we were in there [hospital] for a week, they said the OT would come and see us … and they didn’t come’. Half of the participants had seen an occupational therapist, but only three participants received a referral to community occupational therapy for follow-up. Participants were also unaware that they could receive outpatient occupational therapy or that they could have self-referred.

Most participants were uncertain how occupational therapy could have helped, and for those who had seen an occupational therapist, the value of the service remained unclear. Initially, Basil was confused as to why the therapist visited his home: ‘I thought, “that’s interesting, why is she here?”’ After experiencing occupational therapy, he described the role: ‘You look at somebody’s lifestyle and then you test various apparatus, you ask a lot of questions’. London said: ‘The occupational therapist just makes sure that you can get to the toilet and you don’t need a wheelchair’. Participants frequently requested greater communication on the role of occupational therapy, their intervention plan and their diagnosis.

Challenging the focus of care

For those who did receive occupational therapy, there was dissatisfaction with its focus. Participants prioritised participation in social and leisure occupations, yet interventions targeted self-care remediation and mobility. For example, Wizz said: ‘You don't want these things that they’re pushing onto you, and they never ask you’.

Even when assistive technology was prescribed and accepted, many participants still experienced barriers to occupational participation. This was frequently a problem with the prescription process. For example, Chrissy said, ‘The occupational therapist was supposed to show me how to use it and everything, but she just told me to go to the door, come back and that was about it’. Consequently, Chrissy abandoned the equipment on discharge, and she was unable to participate in valued occupations due to her mobility problems.

Participants believed that occupational therapy input could have played a significant role in reducing the burden of care for their family or partner, and reduced participants’ sense of being a burden. However, the impact of the person’s condition on their social supports was rarely addressed.

The net result of these factors was that participants were left to manage their occupational needs alone, so these needs remained largely unmet. Furthermore, most felt unsupported in the process of adjusting to participation difficulties.

Discussion

Using the PEOP model (Baum et al., 2015) as a theoretical framework, this study explored how brain cancer and its treatments affect the person and their occupational participation, and explored experiences of occupational therapy. Findings indicate that brain cancer and its treatments have far-reaching impacts on a person’s function, resulting in reduced occupational participation and increasing need for environmental supports. Adjustment of occupational priorities and approaches to participation was evident as participants’ capacities diminished. Occupational therapy was infrequently available, and when it was available, participants did not feel it was relevant to their priorities.

Occupational impacts of brain cancer and its treatment

This study has contributed a more detailed understanding of the impact of brain cancer and its treatment than was previously available, framed within an occupational therapy theoretical model. The far-ranging impacts include all aspects of the person, affecting all areas of occupation. Participants also experienced interactions between different person-factor effects (for example neurological factors and fatigue), which compounded occupational participation restrictions.

Previous research has suggested that increasing impairment levels in people with cancer lead to significant participation restrictions in everyday occupations as they move along the continuum from diagnosis to death (Arber et al., 2010; Hammill, 2014; Janda et al., 2008; Philip et al., 2014). In particular, restrictions to productive and leisure occupations are well established in the literature (Khan and Amatya, 2013; Taylor and Currow, 2003; von Post and Wagman, 2017). However, this study is the first to relate the impairments caused by the tumour and treatments to specific ‘person-factors’ and to explore how people with brain cancer adjust the way they participate so that they can continue engaging in meaningful occupations.

An active process of adjusting to functional changes by altering priorities and approaches to occupations was identified. In earlier stages, participants focused more on maintaining self-care and productive occupations. However, as the disease progressed and occupational participation restrictions increased, social and leisure occupations acquired greater importance. Towards the end of life, priority shifted again, to occupations associated with closure and leaving a legacy. While this progression might be broadly consistent for most people, individual priorities along this journey appeared unique.

The role of occupational therapy

Findings related to participants’ negative experiences of occupational therapy were of concern to the research team. Despite the availability and suitability of occupational therapy services, participants had a poor understanding of the occupational therapy role and were often not referred. These environmental factors of limited access and lack of knowledge have been hindering occupational therapy oncology and palliative care practice for many years globally (Chan et al., 2015; Taylor and Currow, 2003). For example, Keesing and Rosenwax (2013) found that occupation was not being adequately addressed by therapists and that carers and therapists alike had a poor understanding of the occupational therapy role. Halkett et al. (2010) identified that occupational therapists do not adequately promote the potential contribution that the profession can make to people with life-limiting illnesses or other health professionals, which may be due to occupational therapists’ own lack of knowledge of their role in this area.

Additionally, these findings suggest that participants were dissatisfied with the focus of occupational therapy interventions, and highlight the need for occupational therapists to take a person-centred approach to care. One way to achieve this is to use an occupational therapy model such as the PEOP model (Baum et al., 2015) as a framework for practice. Therapists working clinically could apply this model to develop occupationally focused interventions that address their clients’ needs and enhance their participation (Baum et al., 2015).

Particular areas of focus for development of occupational therapy research and practice are suggested by these findings. Developing systematic approaches to assessment that address all areas of functioning, occupation types, and environmental factors appears to be a priority. Preparing and supporting the person to actively maintain and alter meaningful occupations as impairment increases and priorities change is highly important. This requires a change in focus from self-care occupations to a broader range of social, leisure, closure and legacy occupations. Educating and voicing the unique role occupational therapy is able to provide to people with brain cancer is also essential.

Limitations

Like most qualitative studies, caution must be exercised when generalising findings. It is acknowledged this study was conducted at a single site, with a small number of predominantly male participants. However, data saturation was reached as per Fusch and Ness’s (2015) guidelines whereby no new information was emerging from participants’ data. Additionally, the lack of gender variation is representative of this diagnosis (Australian Institute of Health and Welfare, 2017). The decision to adopt the PEOP model to frame data collection and analysis may have influenced the emergent themes; however, it also ensured that the interviews were client-centred and addressed all aspects of the person, the environment and all types of occupations. Participants were able to introduce ideas which were then explored, regardless of whether they were linked to this framework, ensuring that the use of the framework did not limit the data. The analysis was influenced by adopting this framework; however, this is consistent with a constructivist perspective and the researchers’ intent and position were made clear from the outset. Notwithstanding these limitations, this has been the first study to explore the experiences of people with brain cancer in relation to occupational participation and occupational therapy. As such, these findings provide a unique insight into the experiences and needs of a poorly researched population group, and may be relevant to other brain cancer services worldwide.

Conclusion

This study makes an original contribution to the evidence base and is strengthened by its use of the theoretical framework of the PEOP model (Baum et al., 2015). Findings suggest that there is a dynamic interaction between the adverse effects of brain cancer and treatment, the person’s active adjustment to functional decline, and participation restrictions. Finally, it is proposed that the focus of occupational therapy with this population may require change if therapists are not closely aligning their services with their clients’ needs, their role lacks clarity, or their referrers are uninformed of the scope of the occupational therapy role with people with brain cancer. Further research is needed to develop more systematic, person-centred and holistic assessments, and interventions that target clients’ occupational priorities.

Key findings

Brain cancer and its treatments cause adverse effects to a person and may alter their occupational needs and participation levels.

An intervention study is warranted to investigate the scope of the occupational therapy role for people with brain cancer.

Promotion of the occupational therapy role in brain cancer may be required to both health professionals and consumers.

What the study has added

This study has been the first to use the PEOP model as a theoretical framework to explore the experiences of people with brain cancer in relation to occupational therapy and occupational participation.

Footnotes

Research ethics

Ethical approval was obtained from Western Sydney University’s Human Research Ethics Committee (H10944) and the Nepean and Blue Mountains Local Health District Human Research Ethics Committee (EC00151) in 2014.

Consent

Written consent was gained from all participants prior to their involvement in the study. Written, informed consent was granted to complete interviews, and allowed dissemination of de-identified findings at conferences and in written format. Consent was sought prior to all participants participating in study interviews.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The authors received no financial support for the research, authorship and/or publication of this article.

Contributorship

KH, KA and DH were involved in the conceptual design of the project and ethics application. KH, CS, NK, HI and LB completed participant recruitment and data collection. KH, KA, CS and NK completed data analysis and write up of the research. All authors reviewed manuscript drafts and approved the final version of the manuscript.

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