Cancer patients’ need for rehabilitation is growing, as more and more people live with the long-term consequences of disease and its treatment due to early detection and improved treatment regimens. There are a number of people living with incurable cancer who have symptoms that need to be managed for many years, paralleling long-term conditions. Beyond clinical management, a sense of hope is vital in enhancing their quality of life

Belchamber, C.A.

Ellis-Hill, Caroline

Gousy, M.H.

English

Bournemouth University Research Online

136 EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(3)Holistic  care www.ejpc.eu.comCancer patients’ need for rehabilitationis growing, as more and more peoplelive with the long-term consequencesof disease and its treatment due to earlydetection and improved treatment regimens.1There are a number of people living withincurable cancer who have symptoms thatneed to be managed for many years,paralleling long-term conditions.2 Beyondclinical management, a sense of hope is vitalin enhancing their quality of life, as it plays anintegral role in their psychosocial well-being.3This paper describes how a small group ofpatients in a hospice day care centre regainedhope through a two-month palliativerehabilitation programme, which included:4  Evaluation/assessment of their symptomsand referral to the appropriate members ofthe palliative care team  Physical care; for example, therapeuticinterventions to reduce lymphoedema and non-pharmacological management of dyspnoea   Co-ordinated multidisciplinary care  Psychological care  Supportive care  Spiritual care  Aromatherapy  Group work, incorporating social care   Exercise  Relaxation  Diversional therapyAll these various aspects of care areconsidered to be important components ofpalliative rehabilitation.4MethodAn interpretative phenomenologicalapproach5 was used to gain an understandingof individual experiences. Box 1 shows thecriteria used to select participants. Followingethical approval by the East Dorset ResearchEthics Committee, eight participants whoattended the day care centre for palliativerehabilitation undertook an in-depth interviewthat allowed detailed qualitative analysis. Fostering hope throughpalliative rehabilitationPalliative rehabilitation is key to enhancing quality of life for people living with cancer,say Caroline Belchamber, Mamood Gousy and Caroline Ellis-Hill,who have sought theperceptions of a small group of patients receiving rehabilitation in a day care centre   A small group of cancer patients attending a day care centre wentthrough a palliative rehabilitation programme meeting their social,physical, emotional and psychological needs. They took part in aqualitative study exploring the benefits of palliative rehabilitation.  Palliative rehabilitation provides the support needed to reduceboth the physical and psychological isolation commonlyexperienced by people living with cancer.  The open and supportive environment of palliative rehabilitationfosters a sense of hope and helps people regain a sense ofconnectedness, enabling them to live rather than just existing.Key pointsInclusion criteria: People living with cancer who had been referredto the palliative day care centre People capable of articulating their experiences People experiencing one or more of thefollowing symptoms: pain, dyspnoea, fatigue People who would have completed palliativechemotherapy and/or radiotherapy at least fourweeks before the start of the palliativerehabilitation programmeExclusion criteria: People who were not fit enough to participate in the two-month palliative rehabilitationprogramme  People who required further palliativechemotherapy or radiotherapy People who had underlying pathologies such as cardiovascular disease, a history ofcardiovascular accidents or a history ofmyocardial infarctionsBox 1. Inclusion and exclusion criteriaCopyright © Hayward Medical Communications 2013. All rights reserved. No unauthorised reproduction or distribution. For reprints or permissions, contact edit@hayward.co.uk137EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(3)www.ejpc.eu.com Holistic  careAges ranged from 45 to 82 years (median 66years); time since primary diagnosis rangedfrom one to 17 years (median seven years) andtime since the most recent secondarydiagnosis from six months to three years(median 15 months); active treatment hadbeen completed between three months andtwo years ago (median ten months). Sevenparticipants had previously had surgery, fourhad been treated by radiotherapy and five hadreceived chemotherapy. All were experiencinga number of symptoms, detailed in Table 1.The interviews covered:  Expectations from the rehabilitationprogramme at the palliative day care centrebefore and after attending  Quality of care received  Quality of communication with staff  Quality of life before and after palliativerehabilitation  Benefits of receiving palliative rehabilitation  Improvements that could be made to theservice  Most difficult symptoms to manage  Care that may have helped manage thesymptoms. The interviews were audio-recorded andtranscribed verbatim. Transcripts were read,re-read, coded and then compared todetermine overall themes, similarities anddifferences, providing a deep understandingof individual experiences.5Regaining hope The qualitative analysis found that the keybenefits of rehabilitation reported byparticipants were psychological support andhope. Participants reported many deep lossesprior to entering rehabilitation, including:loss of bodily health, of energy, strength,mobility, control, self-esteem, role and socialsupport. They described their diagnosis as‘terrifying’, ‘frightening’ and ‘devastating’ andthat they had feelings of abandonment. ‘I’dgiven up, I’d given up. Yes, that’s the only word forit, I’d given up.’ However, participants wereapprehensive about attending, or reluctant toattend, the rehabilitation programme. ‘I wasn’t sure what to expect, because it seems afinal thing, the word hospice, so I wasn’t sureabout the whole thing.’ These feelings ofapprehension changed once the participantscommenced rehabilitation. Hope developedin several ways, which are described below.Regaining hope through sharing Group work was seen as enjoyable, importantand an encouragement to each other,promoting perseverance as well as a sense ofidentity and unity.6 ‘I think doing it in a group isgood, because it is encouraging, as you are spurringone another along.’ Comparing themselves withothers was a source of inspiration and anincentive for participants. The group exercisesalso helped to alleviate the sense of a loss ofphysical ability. ‘Being a sporty person, that’s thesort of thing that I miss.’ The act ofaccomplishing tasks in a group enhancedparticipants’ self-worth, which increased theirability to do more, which in turn reduced theirlevels of fatigue. ‘It gives us the opportunity oftrying something new, of trying somethingTable 1. Physical symptoms experienced by participantsParticipant Cancer Pain Dyspnoea Fatigue Lymphoedema Cramps Dry coughdiagnosis Lower limbs Upper limbs1 Right breast cancer Yes – Yes Yes – – –(recurrence)2 Bilateral breast Yes Yes Yes Yes Yes Yes –cancer3 Renal cell Yes Yes Yes – Yes – –carcinoma4 Cancer of the – Yes – – – – Yesoesophagus5 Cancer of – – Yes – – Yes –the colon6 Right breast Yes – Yes – – – –cancer (recurrence)7 Prostate cancer – Yes Yes – – – Yes8 Cancer of – – Yes – – – Yesunknown primaryCopyright © Hayward Medical Communications 2013. All rights reserved. No unauthorised reproduction or distribution. For reprints or permissions, contact edit@hayward.co.uk138 EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(3)Holistic  care www.ejpc.eu.comdifferent, and perhaps after a while you realise youcan do other things.’ The diversional therapychanged participants’ psychological responseto their symptoms. ‘It makes you forgeteverything else; I mean I forget … I forget to bebreathless.’ Interaction with staff during groupwork was seen by patients as a key element ofrehabilitation. Regaining hope through caring Although the rehabilitation programmeconsisted mainly of group work, participantsdescribed receiving individual attention,feeling important and cared for, whichnurtured a positive outlook and hope. ‘Thecare here has been excellent, [I’ve been] wellpampered; it does make you feel very special.’Participants felt that staff, through attentivelistening and responding to them as valuedindividuals, were giving them theopportunity to express emotions duringconversations without time constraints, thusproducing an atmosphere of comfort andsecurity. Participants also reported that thetherapeutic interventions not only had apositive effect on their bodily health – with anincrease in strength and reduction in pain,fatigue and dyspnoea – but also hademotional and spiritual benefits. Participantsfound aromatherapy particularly beneficial,describing it as relaxing both physically andpsychologically. ‘Complete relaxation, absoluteheaven just to be, just for somebody to dosomething for you […], it was lovely, making yourelax […], making you relax in your mind.’Regaining hope through controlParticipants reported that, beforerehabilitation, physical pain frequentlydisturbed their normal sleeping patterns andwas often associated with cramp, musclespasm and lymphoedema. Reduction in painthrough interventions such as the use ofcompression stockings for lymphoedemamanagement had a beneficial effect onparticipants’ mobility and well-being. ‘Thestockings do help, the legs don’t ache so much andit makes it easier to walk.’ Fatigue, requiringwill, effort and courage to keep going, was alsoa frequently mentioned symptom. ‘I wouldn’thave thought about getting up and going for awalk, it just wouldn’t have appealed to me. I justwouldn’t have had the energy.’ Dyspnoea wasoften perceived as being even worse than painor fatigue. One participant called their lungs‘the main engine of your body’, which meantthat any reduction in lung function was felt tobe a step nearer to death, causingpsychological and emotional distress, anincrease in dyspnoea and loss of control.After rehabilitation, participants reported animprovement in mobility, muscle strength andstamina. From a psychological point of view,they reported feeling more positive, relaxed,accepting, with the ability to ‘do normalthings’ and be in control, which contributedto their sense of hope. ‘I think it’s because I’mseeing other people and I’m not feeling sorry formyself. […] Now I’m even doing the washing up athome, and I never would have dreamt of doing thata few months ago.’ Participantsdescribed being in control oftheir symptoms and felt theyhad improved physically andpsychologically. ‘There was agreat change in my health fromwhen I first came to the palliative day care centre.[…] I was very, very low, I was extremely low. I wasstill very weak and weary and tired, and thattiredness has disappeared completely.’Participants’ perceptions were that palliativerehabilitation had improved their quality oflife by giving them some sense of purpose, areason to live rather than just existing. DiscussionParticipants had different backgrounds andexperiences, but they also had things incommon: their diagnosis, similar symptomsof pain, dyspnoea and fatigue, and the factthat their overall well-being had deterioratedsince diagnosis. These factors are common tomost people living with cancer referred topalliative day care centres. Therefore,although the number of participants wassmall, findings from this study may beapplicable to a wide variety of people with acancer diagnosis and palliative care settingsoffering rehabilitation.Participants found that the following key factors helped them regain hope during palliative rehabilitation:  Active interaction  A positive change in attitudeDiversion  Challenges Unity and wholeness  Achievable goals Feeling valued as an individual  Incentives A comforting environment Normality A sense of well-beingBox 2. What fosters hope during palliative rehabilitation? Gaining a sense ofcontrol may be theturning point in therehabilitation processCopyright © Hayward Medical Communications 2013. All rights reserved. No unauthorised reproduction or distribution. For reprints or permissions, contact edit@hayward.co.uk139EUROPEAN JOURNAL OF PALLIATIVE CARE, 2013; 20(3)www.ejpc.eu.com Holistic  carePrior to rehabilitation, participants feltisolated and often became anxious andwithdrawn, which led to loss of control, lowmood or depression. This state of isolation isdescribed by Fromm7 as one of the majorbehavioural responses to the loss of hope. Asfound by other studies, emotional andspiritual pain were seen to be as stressful asphysical pain.8 Psychological symptomsappeared to affect, and be affected by,perceptions of fatigue, physical symptoms anddisability, especially in those with dyspnoea,as has also been found by Pearman9 and byLee.10 Changing from a negative to a positiveattitude was perceived to be key to the changein bodily health, supporting Mellon’sfindings11 and stressing the psychological aswell as physical effect of rehabilitation. Participants mentioned the importance ofthe environment created by staff, which wasin contrast to the clinical setting, where anindividual seems to exist solely through theirpathology, symptoms, disability andlimitations.12 Findings indicate that not all thesymptoms experienced by people with cancercan be directly attributed to the disease itself.The environment of the day care centreprovided peer recognition and respect, theopportunity to belong to a group and engagein human relationships, a sense of securityand protection, and the opportunity forcreation and recreation.13Buckley and Herth14 have proposed seven hope-fostering strategies, includinginterpersonal connectedness. This‘connectedness’ may have promoted trust,enabling the healthcare professionals toexplore participants’ unique and individualstories. This gave participants freedom toadjust and accept what was happening to their bodies. Once this process had takenplace, participants felt able to achieve more in their lives. Palliative rehabilitation diminished feelingsof hopelessness15 by providing a sense ofcontrol. Gaining a sense of control may be theturning point in the rehabilitation process,bringing people from isolation and depressionto competence and self-esteem – a process thatis achieved by their own actions. Thus it can be said that palliativerehabilitation provides the support needed toreduce both the physical and psychologicalisolation commonly experienced by peopleliving with cancer.ConclusionsPalliative rehabilitation enables people notonly to learn how to control their long-termsymptoms, but also to create new meaning. Inour study, an open and supportiveenvironment fostered a sense of hope andgave participants the mental well-being andphysical energy to look outwards and regain asense of connectedness with themselves andtheir lives, enabling them to live rather thanjust existing. Box 2 highlights key factors that helpedparticipants regain hope during palliativerehabilitation. Further research is needed toexplore these findings, by conductingquestionnaire-based surveys in other hospicesettings offering palliative rehabilitation, andby using validated questionnaires assessingquality of life administered before and afterpalliative rehabilitation.Declaration of interestThe research described in this article was sponsored by the Association ofChartered Physiotherapists in Oncology and Palliative Care, Medi UK Ltd andthe Board of Trustees of the specialist palliative care centre at Lewis-ManningHospice, Poole, Dorset. The authors declare that they have no financialrelationship with these organisations and that there is no conflict of interest.References1. Davies NJ. Cancer survivorship: living with or beyond cancer. Cancer NursPract 2009; 8: 29–34.2. Hindle S. Cancer survivorship and the role of support workers. BritishJournal of Healthcare Assistants 2010; 4: 482–485.3. McClement SE, Chochinov HM. Hope in advanced cancer patients. Eur JCancer 2008; 44: 1169–1174.4. Belchamber CA, Gousy MH. Rehabilitative care in a specialist palliative day care centre: a study of patients’ perspectives. Int J Ther Rehab 2004; 11: 425–434. 5. Smith JA. Beyond the divide between cognition and discourse: usinginterpretive phenomenological analysis in health psychology. PsychologyHealth 1996; 11: 261–271.6. Belchamber CA. Participants’ perception of groupwork in the managementof cancer symptoms in older people. Groupwork 2009; 19: 79–100.7. Fromm E. Revolution of Hope: Toward a Humanized Technology. New York:Harper and Row, 1970.8. Chen ML. Pain and hope in patients with cancer: a role for cognition.Cancer Nurs 2003; 26: 61–67.9. Pearman T. Psychosocial factors in lung cancer: quality of life, economicimpact, and survivorship implications. J Psychosoc Oncol 2008; 26: 69–80.10. Lee EH. Fatigue and hope: relationships to psychosocial adjustment inKorean women with breast cancer. Appl Nurs Res 2001; 14: 87–93.11. Mellon S. Comparisons between cancer survivors and family members onmeaning of the illness and family quality of life. Oncol Nurs Forum 2002; 29: 1117–1125.12. Galvin D. The Clinical Attitude in Rehabilitation and Alternatives … A Reaction. In: Woods DE, Wolf A, Brubaker D. The Clinical Model inRehabilitation and Alternatives. New York: National Rehabilitation CounselingAssociation and World Rehabilitation Fund, 1983: 39–43.13. Bauer D. Foundations of Physical Rehabilitation: A Management Approach.Edinburgh; Churchill Livingstone, 1989.14. Buckley J, Herth K. Fostering hope in terminally ill patients. Nurs Standard2004; 19: 33–41.15. Scialla S, Cole R, Scialla T, Bednarz L, Scheerer J. Rehabilitation for elderlypatients with cancer asthenia: making a transition to palliative care. PalliatMed 2000; 14: 121–127.Caroline Belchamber, Physiotherapy Lecturer, School of Health and Social Care, BournemouthUniversity, Bournemouth; Mamood Gousy, PrincipalLecturer, School of Health and Social Care, Universityof Greenwich, London; Caroline Ellis-Hill, SeniorLecturer, Centre for Qualitative Research, School ofHealth and Social Care, Bournemouth University,Bournemouth, UKCopyright © Hayward Medical Communications 2013. All rights reserved. No unauthorised reproduction or distribution. For reprints or permissions, contact edit@hayward.co.uk

Beyond the divide between cognition and discourse: using interpretive phenomenological analysis in health psychology. Psychology Health

Cancer survivorship and the role of support workers.

Cancer survivorship: living with or beyond cancer. Cancer Nurs Pract

Chochinov HM. Hope in advanced cancer patients.

Comparisons between cancer survivors and family members on meaning of the illness and family quality of life. Oncol Nurs Forum

Fatigue and hope: relationships to psychosocial adjustment in Korean women with breast cancer. Appl Nurs Res

Fostering hope in terminally ill patients. Nurs Standard

Foundations of Physical Rehabilitation: A Management Approach.

Pain and hope in patients with cancer: a role for cognition. Cancer Nurs

Participants’ perception of groupwork in the management of cancer symptoms in older people. Groupwork

Psychosocial factors in lung cancer: quality of life, economic impact, and survivorship implications.

Rehabilitation for elderly patients with cancer asthenia: making a transition to palliative care. Palliat Med 2000; 14: 121–127. Caroline Belchamber, Physiotherapy Lecturer, School of Health and Social Care,

Rehabilitative care in a specialist palliative day care centre: a study of patients’ perspectives.

Revolution of Hope: Toward a Humanized Technology.

The Clinical Attitude in Rehabilitation and Alternatives … A Reaction. In: Woods

Fostering Hope Through Palliative Rehabilitation

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