exploring cancer rehabilitation services in south wales: … - judit csontos - physiotherapy... ·...

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Methodology : A purposive sample of healthcare professionals (n=20) and people affected by cancer (n=15) was recruited from two study sites. Eligible healthcare professionals had at least one year experience in cancer rehabilitation. People affected by cancer were recruited if they received rehabilitation from one of the study sites. Approval was granted by London South – East Research Ethics Committee (17/LO/2123). Written informed consent was obtained from every participant. Audio recorded, semi-structured one-on- one interviews were transcribed verbatim. Three interviews were dyadic due to people’s partner’s joining. Thematic analysis was based on Braun and Clarke (2006). Good for the body and soul Numerous people reported the positive effect of exercise classes on their health. Exercise classes as part of cancer rehabilitation were valuable for restoring physical health. Additionally, cancer rehabilitation had a major role in helping people cope with stress and anxiety related to their cancer diagnosis: ‘…I do a lot of arm work and lifting weights, which improves my overall wellbeing, because I breathe better, I relax better and I’m learning how to relax again. Oh, dear, I couldn’t go to sleep some nights, I just couldn’t relax. But now I can. And it’s partly the physical exercise I’m doing, coz I’m properly tired and the breathing exercises that I’ve… I’ve learned via Tai Chi, so it’s… it’s coming together.’ (Participant_03 affected by breast cancer) ‘…although i… it’s hydrotherapy, hm… there is a big social and mental side to it [hydrotherapy]. I would reckon that my problems were somewhere in the region of 60% mental…’ (Participant_10 affected by prostate cancer) Expert attention For people affected by cancer, it was important to have someone who understood their diagnosis and was able to reassure them with expert advice on what they could achieve and how far they could push themselves physically. ‘Even when in the pool [hydrotherapy] first I had ‘Oh, no’ I was a bit shy, I didn’t want to. But their reassurance and their coaxing me to do things. I think that’s what was the best thing for me. Hm… just putting my trust in them really.’ (Participant_28 affected by breast cancer) ‘And hm… the girls doing the Tai Chi classes are really, really good, and they’re very attentive, because they’re watching you all the time and one day I was feeling a bit hm… light headed and hm… I didn’t think I was showing it at all. And I said I was fine, and the next thing one of them was next to me saying ‘Are you Ok?’ And I thought ‘How did you know?’ (giggling) So watching, you don’t realise that they’re watching you so much…’ (Participant_02 affected by colorectal cancer) Lack of information on services as a barrier People often faced difficulties in trying to find the right services that could help with their rehabilitation needs. There was often insufficient information available for people affected by cancer to make an informed decision on who they could turn to. ‘…if you speak to people they’ll say ‘Oh, well, I’ve just had aromatherapy or acupuncture or something…’ And you’re like ‘Oh, well, I didn’t know that you can get that.’ ‘Oh, if you need to speak to this person and this…’ You know, so it’s seems to be more word of mouth, there doesn’t seem to be a formal kind of way of finding things out.’ (Participant_37 affected by breast cancer) ‘As I say, it would be nice, certainly if we had more information about [third sector] nurses, you know, because there’s not a lot of hm… information out there in… in… as my opinion. Because they do such a good job, that it… you know, do they only do the job in the gym and in the ward? I don’t know…’ (Companion_16 partner of a person affected by prostate cancer) Rehabilitation is not routine in the cancer pathway Healthcare professionals reported numerous barriers to care provision. One of the main barriers is that cancer rehabilitation is not provided routinely within the cancer pathway. This could explain why people did not always have information on available services. “Referrals into us is probably the other big difficulty, is quite ad hoc, it’s only when people know about us, so it’s not routine within pathways that if you’ve got a cancer diagnosis you get the opportunity to see a therapist.” (Professional_01 - OT) “The [Name of the surgical unit] then transfer back out to the local team, cause it might be a few weeks before they come here, they might not come here. Hm… and the teams locally are a bit more haphazard, there’s no one who, some of the community teams get referrals and phone us to ask for advice, cause they don’t feel competent to deal with neuro-oncology.” (Professional_02 - Speech and language therapist) Judit Csontos, Dr Dominic Roche, Dr Tessa Watts Exploring cancer rehabilitation services in South Wales: qualitative understanding from the perspectives of people affected by cancer and healthcare professionals Conclusion : The preliminary findings of this study indicate that cancer rehabilitation is highly valued by people affected by cancer. However, rehabilitation is still not routinely provided within the cancer pathway. This can act as a barrier to supporting people with cancer related health problems, particularly if there is scarce knowledge on available cancer rehabilitation services. Service promotion among people affected by cancer and within the multidisciplinary team may help in overcoming this barrier. Purpose : Internationally, cancer rehabilitation has been found to have positive impact on quality of life (Hunter et al. 2017). Services can consist of physical exercise, psychological support and health education, depending on people’s needs. However, 39% of Welsh Cancer Patient Experience Survey respondents reported they did not always receive practical advice or support to cope with the consequences of cancer (Welsh Government, 2017). The reason for this lack of support and the value of existing services in Wales, UK have not yet been fully investigated. The aim of this study was to explore the value, barriers and facilitators to cancer rehabilitation from the perspectives of people affected by cancer and healthcare professionals. Contact: Judit Csontos via e-mail: [email protected] Date of preparation: 10/10/2019 References: Braun, V. & Clarke, V. (2006). Qualitative Research in Psychology, 3(2), 77-101. Hunter et al. (2017). The American Journal of Occupational Therapy, 72(2), 1-11. Welsh Government (2017). Welsh Cancer Patient Experience Survey. Implications : The qualitative study reported here is part of a three phase project: Realist Evaluation of Cancer Rehabilitation Services in South Wales (REEACaRS). Within REEACaRS qualitative and quantitative methods are combined to explore in what circumstances cancer rehabilitation services work, for whom and how. Identifying the value and barriers to cancer rehabilitation can aid the improvement of services and might help more people cope better with the consequences of cancer. Feedback is given to the two specialist cancer rehabilitation services on the value and barriers to care provision.

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Page 1: Exploring cancer rehabilitation services in South Wales: … - Judit Csontos - Physiotherapy... · Exploring cancer rehabilitation services in South Wales: qualitative understanding

Methodology:• A purposive sample of healthcare

professionals (n=20) and people affectedby cancer (n=15) was recruited from twostudy sites.

• Eligible healthcare professionals had atleast one year experience in cancerrehabilitation. People affected by cancerwere recruited if they receivedrehabilitation from one of the study sites.

• Approval was granted by London South –East Research Ethics Committee(17/LO/2123).

• Written informed consent was obtainedfrom every participant.

• Audio recorded, semi-structured one-on-one interviews were transcribed verbatim.

• Three interviews were dyadic due topeople’s partner’s joining.

• Thematic analysis was based on Braun andClarke (2006).

Good for the body and soulNumerous people reported the positive effectof exercise classes on their health. Exerciseclasses as part of cancer rehabilitation werevaluable for restoring physical health.Additionally, cancer rehabilitation had a majorrole in helping people cope with stress andanxiety related to their cancer diagnosis:‘…I do a lot of arm work and lifting weights, whichimproves my overall wellbeing, because I breathebetter, I relax better and I’m learning how to relaxagain. Oh, dear, I couldn’t go to sleep some nights, Ijust couldn’t relax. But now I can. And it’s partly thephysical exercise I’m doing, coz I’m properly tired andthe breathing exercises that I’ve… I’ve learned via TaiChi, so it’s… it’s coming together.’ (Participant_03affected by breast cancer)

‘…although i… it’s hydrotherapy, hm… there is a bigsocial and mental side to it [hydrotherapy]. I wouldreckon that my problems were somewhere in theregion of 60% mental…’ (Participant_10 affected byprostate cancer)

Expert attentionFor people affected by cancer, it was importantto have someone who understood theirdiagnosis and was able to reassure them withexpert advice on what they could achieve andhow far they could push themselves physically.‘Even when in the pool [hydrotherapy] first I had ‘Oh,no’ I was a bit shy, I didn’t want to. But theirreassurance and their coaxing me to do things. I thinkthat’s what was the best thing for me. Hm… justputting my trust in them really.’ (Participant_28affected by breast cancer)

‘And hm… the girls doing the Tai Chi classes are really,really good, and they’re very attentive, becausethey’re watching you all the time and one day I wasfeeling a bit hm… light headed and hm… I didn’t think Iwas showing it at all. And I said I was fine, and thenext thing one of them was next to me saying ‘Are youOk?’ And I thought ‘How did you know?’ (giggling) Sowatching, you don’t realise that they’re watching youso much…’ (Participant_02 affected by colorectalcancer)

Lack of information on services as a barrierPeople often faced difficulties in trying to findthe right services that could help with theirrehabilitation needs. There was ofteninsufficient information available for peopleaffected by cancer to make an informeddecision on who they could turn to.‘…if you speak to people they’ll say ‘Oh, well, I’ve justhad aromatherapy or acupuncture or something…’And you’re like ‘Oh, well, I didn’t know that you canget that.’ ‘Oh, if you need to speak to this person andthis…’ You know, so it’s seems to be more word ofmouth, there doesn’t seem to be a formal kind of wayof finding things out.’ (Participant_37 affected bybreast cancer)

‘As I say, it would be nice, certainly if we had moreinformation about [third sector] nurses, you know,because there’s not a lot of hm… information out therein… in… as my opinion. Because they do such a goodjob, that it… you know, do they only do the job in thegym and in the ward? I don’t know…’(Companion_16 partner of a person affected byprostate cancer)

Rehabilitation is not routine in the cancerpathwayHealthcare professionals reported numerousbarriers to care provision. One of the mainbarriers is that cancer rehabilitation is notprovided routinely within the cancer pathway.This could explain why people did not alwayshave information on available services.“Referrals into us is probably the other big difficulty, isquite ad hoc, it’s only when people know about us, soit’s not routine within pathways that if you’ve got acancer diagnosis you get the opportunity to see atherapist.” (Professional_01 - OT)

“The [Name of the surgical unit] then transfer back outto the local team, cause it might be a few weeks beforethey come here, they might not come here. Hm… andthe teams locally are a bit more haphazard, there’s noone who, some of the community teams get referralsand phone us to ask for advice, cause they don’t feelcompetent to deal with neuro-oncology.”(Professional_02 - Speech and language therapist)

Judit Csontos, Dr Dominic Roche, Dr Tessa Watts

Exploring cancer rehabilitation services in South Wales: qualitative understanding from the perspectives of people affected by cancer and

healthcare professionals

Conclusion:The preliminary findings of this study indicatethat cancer rehabilitation is highly valued bypeople affected by cancer. However,rehabilitation is still not routinely providedwithin the cancer pathway. This can act as abarrier to supporting people with cancer relatedhealth problems, particularly if there is scarceknowledge on available cancer rehabilitationservices. Service promotion among peopleaffected by cancer and within themultidisciplinary team may help in overcomingthis barrier.

Purpose:Internationally, cancer rehabilitation has beenfound to have positive impact on quality of life(Hunter et al. 2017). Services can consist ofphysical exercise, psychological support andhealth education, depending on people’s needs.However, 39% of Welsh Cancer PatientExperience Survey respondents reported theydid not always receive practical advice orsupport to cope with the consequences ofcancer (Welsh Government, 2017). The reasonfor this lack of support and the value of existingservices in Wales, UK have not yet been fullyinvestigated. The aim of this study was toexplore the value, barriers and facilitators tocancer rehabilitation from the perspectives ofpeople affected by cancer and healthcareprofessionals.

Contact: Judit Csontos via e-mail: [email protected] of preparation: 10/10/2019

References:Braun, V. & Clarke, V. (2006). Qualitative Research in Psychology, 3(2), 77-101. Hunter et al. (2017). The American Journal of Occupational Therapy, 72(2), 1-11.Welsh Government (2017). Welsh Cancer Patient Experience Survey.

Implications:The qualitative study reported here is part of athree phase project: Realist Evaluation of CancerRehabilitation Services in South Wales(REEACaRS). Within REEACaRS qualitative andquantitative methods are combined to explore inwhat circumstances cancer rehabilitationservices work, for whom and how. Identifyingthe value and barriers to cancer rehabilitationcan aid the improvement of services and mighthelp more people cope better with theconsequences of cancer.

Feedback is given to the two specialist cancerrehabilitation services on the value and barriersto care provision.