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Corbett M, Heirs M, Rose M, et al. The delivery of chemotherapy at home: an evidence synthesis. Southampton (UK): NIHR Journals Library; 2015 Apr. (Health Services and Delivery Research, No. 3.14.)

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The delivery of chemotherapy at home: an evidence synthesis.

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Appendix 8Qualitative data extraction summary

General detailsAim/methodologyPopulation/data collectionAnalysisSummary of findings
Main reference: Bakker et al. 200157
Canada
Linked references: an additional comparative quantitative paper was mentioned but unobtainable
Perspectives: patients
Aim: to gain an understanding of cancer patients’ experienced of receiving chemotherapy at community clinics
Methodology: not reported
Sampling: participants were purposively sampled to cover each of the 13 community chemotherapy clinics
Population: all patients living in the area were given the choice of treatment at the regional cancer centre or at a community clinic, of these, 28 were interviewed
Data collection: unstructured interviews conducted in the patient’s home with a research assistant. Interviews were taped and transcribed
Patients were asked about receiving treatment at the community clinic, and were asked to compare this experience with visits or appointments at the regional centre including examples of the advantages or disadvantages
Demographic data were collected and summarised
Thematic analysis of the interviews using transcripts. First three interviews reviewed by full research team, subsequently analysed by two researchers. Emergent themes and coding categories were described and line-by-line coding used
Coding framework and examples were discussed with the wider research team
Of the 28 who began community treatment, two chose to return to the regional cancer centre to finish their treatment
Two key themes emerged:
Balancing gains and losses:
Perceived differences in cancer treatment were grouped under QoL (travel time, lifestyle management, disruption) and biomedical care (technical competence, access to information, interaction with other patients) and participants seemed to trade these off when making the decision about where to have their treatment
Communication links:
This referred to communication between patients and health-care providers, as well as between health-care professionals at the different treatment locations. Patients felt it was easier to establish rapport with community staff. Although regional centres were associated with greater expertise, patients were willing to trade off so long as clear evidence of communication links with cancer specialists (e.g. telephone, fax, computer)
Most patients preferred gains in QoL over medical expertise
Main reference: Butler 198459
California, USA
Linked references: none
Perspectives: patients and their family
Aim: unclear, appears to be an audit of a new service providing home care
Methodology: not reported
Sampling: unclear, 15 patients were mentioned as receiving the new treatment and all were asked about their experiences
Population: n = unclear although 15 patients are mentioned, some of whom received outpatient treatment and others experienced treatment at home
Equal numbers of men and women. Ages ranged from 30 years to 65 years
Data collection: questions about experience of treatment were included in routine outpatient review appointments with the oncology clinical nurse specialist
Not reportedPatients indicated that their QoL, was improved when they had control over their daily activities
Hospitalisation for chemotherapy was disruptive and prevented a sense of normality. Access to regular support systems was interrupted by hospitalisations
Home chemotherapy improved many of these aspects but patients were concerned about the functioning of the catheter and pump
Main reference: Corrie et al. 20134
UK
Linked references: Corrie et al.,98 Corrie,99 Corrie et al.,100 Corrie (2013, Cambridge University Hospitals NHS Foundation Trust, unpublished document)
Perspectives: patients; health-care professionals
Aim: to assess experience of the treatment from patient and staff perspectives
Methodology: framework (no further details reported)
Sampling: patients purposively sampled for maximum variation, staff sampling not reported
Protocol mentions selecting one in every 10 patients plus their carer, but unsure if this was successful or how many took part
Population: patient participants were taking part in a three-arm RCT comparing home, community and outpatient treatment. Included curative, palliative and supportive care (see Appendix 3 for more details)
11 patients; five consultant oncologists; three GPs; five chemotherapy nurses; two hospital pharmacists and two senior managers
Data collection: semistructured interviews conducted before treatment and after 12 weeks of treatment with patients. Interviews were recorded and transcribed
Matrix-based framework analysis approachMost patients expressed support for their treatment location regardless of setting. Most patients expressed a preference for future treatment in the community. Notably, many patients declined to be randomised due to strong prior preferences
Clinical staff were concerned about patient and staff safety, particularly in relation to the home environment. The hospital and GP settings were seen as more secure
Although attitudes to safety concerns improved during the trial, this was not reflected in increased patient referrals
All groups felt that community treatment offered patients convenience but raised concerns about affordability
Main reference: Crisp 201060
Canada
Linked references: none
Perspectives: patients
Aim: to explore and describe the perspectives of cancer patients receiving active treatment who chose to receive or refuse home chemotherapy
Methodology: interpretive description
Sampling: convenience sampling by nurses from the Cancer Treatment at Home pilot programme conducted by Alberta Health Services
Population: plan was to interview five who accepted home treatment and five who refused it, but impossible to recruit those who declined treatment at home and so additional accepters were recruited for a total of 10 participants
Vignettes of all participants presented, context was large metropolitan area
Length of treatment ranged from months to 4 years. Both curative and palliative treatments were given
Data collection: semistructured interviews, recorded and transcribed plus field notes. Took place in patient’s home or at the Cross Cancer Institute
Nine interviews analysed (one lost due to technical problems)
Constant comparative analysis and ongoing engagement with the data, focused on inductive analysis. Use of transcripts, research notes, in-process diagrams and audio recordings
Analysis followed each interview with key concepts being added to a master board. Researcher and supervisor both involved in process
Summaries of research results offered to participants
Home was identified as being a ‘natural habitat’ in which they were better able to adapt to their circumstances. Patients were better able to redistribute their resources including time, energy and finances in ways that were meaningful. They felt that the care provided was enhanced and they were more receptive to teaching. Lastly patients viewed themselves as less ill and were better able to cope with their treatments
Main reference: Frølund 201141
Denmark
Linked references: Frølund 2011,41 full published paper, quant results
Perspectives: patients
Aim: to examine how patients experience chemotherapy at home, and how it affects their everyday lives
Methodology: not reported
Sampling: all patients in the case series were included
Population: six patients (50% male, aged between 63 years and 73 years) taking part in the case series, all with experience having treatment both in hospital and at home
All were diagnosed with bone marrow cancer in 2009
Supportive care treatment
Patients were scheduled to receive either 16 or 24 treatments; home treatment was given between 3 and 11 times
Data collection: semistructured interviews recorded and transcribed
Refers to Steinar Kvale
Paul Ricoeurs hermeneutic phenomenology
  • A naive reading, first reading
  • A structural analysis, coding for meaning units using direct quotations
  • A critical interpretation and analysis of units and codes
Six main themes identified: patients preferred home treatment over hospital treatment; patients are less fatigued and stressed; home treatment has less adverse impact on patients’ daily lives; patients have more energy left over for social relationships; patients feel less medicalised and accordingly home treatment increases quality of life
Having experienced nurses from the oncology department provides a sense of security
Main reference: Hall 200830
UK
Linked references: none
Perspectives: patients
Aim: to compare the experience of receiving chemotherapy at home vs. in hospital
Methodology: humanistic approach/phenomenology
Sampling: all patients in the trial were included
Population: 15 patients were randomly allocated to treatment groups: 10 received treatment at home and five in the hospital. All patients were interviewed. See Appendix 3 for more details
Data collection: semistructured interviews (timing unclear) were recorded and transcribed
Thematic analysis (Bowling 1997)Quality of life was an important factor in how care was perceived by patients. Both groups expressed satisfaction with the quality of their care; however, variations were also present in service provision
Theme: comfort and security
Theme: privacy
Theme: practicalities
Theme: relationships
Patients treated at home were more strongly positive about their experiences and felt that it should be an option offered to all patients
Main reference: Hansson 2011,61 Ph.D. thesis
Denmark
Linked references: Hansson et al.,38 non-randomised trial report; Hansson et al.,67 qualitative paper; Hansson 2010,105 abstract; Hansson 2011, Hansson 2012,106 abstract
Perspectives: patients (children) and family members
Aim: to describe family members’ experiences of a hospital-based home-care programme for children with cancer
Methodology: descriptive inductive method
Sampling: purposively sampled families from a pool of 53 children. Sample was based on differences in diagnosis, family constellation, parents’ occupation, number of home-care visits and duration of treatment programme
Population: 14 parents representing 12 families were invited, of which two declined. 11 interviews conducted, recorded and transcribed
Detailed sample characteristics and eligibility given in page 61 of full paper
Number of home-care visits 9–66. Duration of treatment 3–16 months
Data collection: unstructured interviews were recorded and transcribed
Location and family member involvement in interview was chosen by the parents (six at home, five in hospital)
Both parents = three families
One parent = six families
Both parents individually = one family
Child and sibling = five families
Transcriptions were analysed using Graneheim and Lundman (2004) methods. Content analysis used as an interpretative process for analysing written communication. Focused on differences and similarities in the text
Analysed using concepts of meaning units, codes, subthemes and themes
Four steps:
All authors read each interview several times
Transcript divided into meaning units by first authors, each meaning unit then condensed into a description
Condensed meaning units are labelled with codes, abstracted and compared for similarities and differences by all authors
Each subtheme critically read, compared and a main theme formulated with is thread of underlying meaning
Preliminary interpretations and themes presented to peers for discussion and credibility checking
Main theme: supporting the family to remain intact throughout the childhood cancer trajectory
Subthemes:
‘Decreasing the strain on the family and ill child’
‘Maintaining normality and an ordinary life’
‘Fulfilling the need for safety and security’
Main reference: Hjorleifsdottir et al. 200864
Iceland
Linked references: Hjorleifsdottir et al. 2007109
Perspectives: patients
Aim: to explore perceptions of care and service provided in an outpatient setting (also looked at experience of having cancer and coping strategies)
Methodology: inductive qualitative
Sampling: oncology nurses selected patients to be approached for the study, more than one hospital clinic included
Population: n= 25
Having radiotherapy or chemotherapy in an oncology outpatient clinic
16 women, nine men (mean age = 55 years, SD 13 years). 60% receiving chemotherapy, 40% receiving radiotherapy
Curative (n = 16), symptom control (n = 8), palliation (n = 1)
Data collection: semistructured interviews carried out in preferred location (most chose private room at oncology clinic). Recorded and transcribed
Interview questions reported
Manifest and latent content analyses used. Detailed descriptions provided. Most analysis carried out by one authors working from transcripts using verbatim quotations and pre-established categories. Three other authors also read the analysis during the process and contributed ideas and discussionFindings:
Satisfaction in the outpatient clinic depended on delivery of drugs, caring attitudes of the health professionals and the caring encounters
Negative factors included waiting times, difficulty parking and the clinic environment however there was tolerance around other patients sometimes needing more time with a doctor
Other sections of the results focused on the impact of the diagnosis, coping strategies including attempting to maintain normality and keeping the uncertainty at a distance (only those findings relating to care received and satisfaction with outpatient setting extracted)
Main reference: Iredale et al. 201151
UK (Wales)
Linked references: none
Perspectives: patients
Aim: to determine who was using the bus (mobile cancer support unit) and explore their perceptions of having treatments on the bus
Methodology: not reported (part of a mixed-methods project with a quantitative survey plus interviews)
Sampling: all patients were invited to participate in interviews
Population: six chemotherapy patients and four social care patients took part. The bus provided both chemotherapy and social care services
Data collection: bus visitors were given a survey to complete and also invited to attend follow-up interviews
Semistructured interviews with questions informed by prior interviews with Tenovus (cancer charity) and Velindre (hospital) staff took place in patients’ homes. Recorded and transcribed
Aimed to capture first impressions, experiences of treatment and comparison with previous treatment elsewhere
Thematic analysis (no further details)Most patients spoke very highly of the bus both based on first impressions and interior appearance and cleanliness
Bus was said to be more convenient, more personal and more organised in comparison to previous treatment experiences
Treatment on the bus was reported to save time and money, with reduced levels of stress and anxiety
As confirmed by author, all quotations and comments on service were from chemotherapy patients
Main reference: Kelly et al. 200462
UK
Linked references: none
Perspectives: patients; health-care professionals
Aim: examine the existing outpatient chemotherapy provision and assess the feasibility of providing a home-based chemotherapy service
Methodology: not reported
Sampling: targeted convenience sampling of patients with colorectal cancer as their treatment likely to be more amenable to home chemotherapy
Purposive sampling of health-care professionals based on role and experience
Population: five patients with colon cancer currently undergoing outpatient chemotherapy with 5-FU
12 health-care professionals; consultant oncologists, chemotherapy nurses, pharmacist, nursing directorate and financial managers and local commissioner of cancer services
Data collected between February and April 2000
Data collection: semistructured interviews recorded and transcribed
Patient interview topics included: experiences of outpatient service (travel, side effects, general satisfaction), financial impact of illness/treatment and views on the proposed home chemotherapy service
Health-care professionals were asked about opinions on current service, contracting and cost issues and feasibility of a home service
Transcripts were analysed thematically on a line-by-line basis by two researchers working independently
Exemplar quotes were identified and interview themes were then integrated with contract and cost data from the rest of the paper (mixed methods)
Views on current service provision:
All patients were generally satisfied with their care. Any negative comments related to waiting and journey times (all patients reported being delayed by up to 5 hours on at least one visit)
Health-care professionals expressed concerns about waiting times and current service configuration, physical set-up contributed to problems
Views on home-based chemotherapy:
Patients reported a mixture of views; some felt that it would be a good idea and would reduce travel time with treatment given in a familiar and private setting. Some patients expressed concerns about safety and need for expertise from staff
Health-care professionals were interested at least in theory in the provision of home chemotherapy. They raised concerns about funding, practicalities of patient numbers and increased demand
Specific points relating to changes were made including the need for structured development and reference to local Cancer Networks
Main reference: Mitchell 201139
UK
Linked references: Mitchell 2013,50 published paper
Perspectives: patients and partners
Aim: to explore experiences of people with cancer who received chemotherapy treatment in outpatient clinic and/or on board the MCU
Methodology: interpretive phenomenological approach
Sampling: convenience sampling, first 10 to respond to invitation in each setting were interviewed
Population: n = 20
Ten patients attending the mobile cancer unit, 10 attending the outpatient clinic
Data collection: in-depth interviews in patient’s home (n = 19) and in researcher’s home (n = 1). In some cases spouses or partners were also involved
All interviews were recorded and transcribed. Interviews lasted between 1 hour and 3 hours
An interview journal was also kept to record notes on context and body language
Thematic phenomenological analysis involving three readings of the transcripts to familiarise, code words/sentences/paragraphs, and then to allocate codes to new or existing categories
Exemplary statements for each category were collected. Analyses were verified through discussion with a colleague
Themes were developed from the categories
Only the findings relating to the process of receiving chemotherapy were presented, although participants told of their full journey through symptoms, diagnosis, referral and treatment
Theme: in it together
Theme: car parking and travel
Theme: waiting for treatment in clinic
Theme: having chemotherapy on the MCU
Theme: privacy, dignity and safety
The cancer and chemotherapy journey was described as being undertaken by the participant and their significant other. Available car parking and travelling impacted on quality of life, as did the environment and accessibility of nurses to discuss issues with participants. The most important, distinguishing feature between receiving chemotherapy in outpatient clinic and the MCU was the amount of time spent waiting. Having treatment on the MCU was perceived to be less formal and, therefore, less stressful. Participants reported significant savings in time spent travelling, waiting and having treatment, expenditure on fuel and companion time and costs
Main reference: McIlfatrick et al. 200763
Northern Ireland, UK
Linked references: none
Perspectives: patients
Aim: to explore patients’ experiences of having chemotherapy in a day-hospital setting
Methodology: not reported, based on Meleis’s theory of nursing transitions
Sampling: convenience sample of patients who had experienced at least one cycle of chemotherapy as an outpatient and as an inpatient
Population: n = 30
Ages ranged from 21 years to 77 years; seven different cancers included; 50% had ovarian cancer; range of chemotherapy treatments given
Data collection: semistructured interviews conducted in a private room in the day hospital, recorded and transcribed. Topic areas were reported
Narrative analysis was used, specifically Polkinghorne’s two-stage process. Generalised paradigmatic analysis of narratives followed by an in-depth analysis of the narratives
Member checks were used to establish ‘trustworthiness’, eight patients were asked to comment on themes following analysis
Analysis was carried out by one researcher and checked by another and coding was performed by two blinded researchers. Agreement on themes and narratives was generally reported
Findings:
Four key themes were identified:
Facing the situation
Perceptions of the day hospital (positive sense of normality vs. negative dehumanising)
System issues (environmental and organisational)
Looking ahead
The themes in italics above relate directly to this review and these results were extracted in full
Main reference: Pace et al. 200929
UK (England)
Linked references: Pace et al.102
Perspectives: patients
Aim: a randomised comparison (crossover) of outpatient and community chemotherapy that included a satisfaction outcome
Methodology: not reported
Sampling: all participants selected for the trial (see Appendix 3)
Population: two patients took part in the trial, of which 11 provided additional information on their experiences
Data collection: Chemotherapy Patient Satisfaction Questionnaire which includes an open-ended question
Examples of feedback were provided from four patientsPatients mentioned less waiting time, ability to maintain normality and reduced tiredness following treatment as a consequence of community-based treatment
Main reference: Rischin et al. 200032
Australia
Linked references: King 200154
Perspectives: patients
Aim: to determine patient preferences between hospital- and home-based chemotherapy
Methodology: not reported
Sampling: all eligible randomised patients who completed treatment were included
Population: 20 participants who completed the RCT and returned their questionnaires. (See Appendix 3 for more details)
Data collection: questionnaire administered after two treatments (crossover design ensured all patients would have experienced both settings) to 20 patients
Questionnaire included open-ended questions about ‘any perceived difficulties or advantages of treatment in hospital or home’
Not reported; summary lists of reasons and comments were providedNo concerns relating to chemotherapy in the home were reported, some patients reported problems with hospital treatment (transport difficulties and waiting times)
Almost all of the patients listed advantages to being treated at home; only one patient felt that there were advantages to being treated in the hospital
Main reference: Smith and Campbell 200458
Scotland, UK
Linked references: none
Perspectives: health professionals
Aim: to explore how key health professionals view current models of outreach cancer care. (Study also collated data on current schemes serving remote rural cancer patients)
Methodology: mixed methods (quantitative survey plus semistructured interview)
Sampling: outreach clinics defined as more than 1 hour’s drive from one of five cancer centres. Key agents were identified for interview (no further details)
Population: n = 19
Oncologists (5), clinical nursing manager (1), liaison sister (1), lead cancer nurse (1), specialist nurses (11) covering a total of 23 geographical locations of which seven did not provide chemotherapy
Data collection: semistructured telephone interviews recorded and transcribed
Findings:
Widely varying practices in the delivery of cancer care were reported. Health professionals felt the main issues are expertise, travelling, accessibility for patients, communication (between cancer centres and outreach clinics) and expansion of the rural service
Professionals were generally keen to see an expansion of the rural services if expertise and communication issues could be addressed
Main reference: Stevens et al. 200456
Canada
Linked references: Stevens et al.,33 RCT; Breitfield,104 editorial; Stevens et al.,55 patient views
Perspectives: health-care professionals
Aim: to explore the views and experiences of health-care professionals involved in a crossover RCT comparing home vs. outpatient chemotherapy for children
Methodology: not clearly reported
Sampling: purposive sampling to include range of experience, education and roles
Population: 33 health-care professionals were interviewed after 6 months of delivering the home chemotherapy programme
Clinic nurses, community nurses, paediatrician, care co-ordinator, programme administrator, laboratory manager and pharmacist
Data collection: individual semistructured interviews including topics on strengths and limitations of the programme, resource/training/education implications, extending the programme, impact of the programme on their role
Three experienced interviewers collected the data in a private room. All interviews recorded and transcribed
Mayring’s content analysis was used. Transcriptions read line by line; memos used to record developing insights. Inductive reasoning used to organise data into categories and emergent themes
Inter-rater checks carried out by independent researcher coding sections of transcripts; analysis discussed between two researchers to check for discrepancies and agree consensus
NVivo used to display and manage the data including participant characteristics
Thirteen broad categories developed then collapsed into three key categories
Data from community and hospital-based staff were initially analysed separately and then compared
Perceived family benefits
  • Reduction in disruption
  • Decrease in psychological stress
Human resources and service delivery implications
  • Consistency in personnel and care
  • Skills and knowledge requirements
  • Advantages of administering treatment at hospital
  • Problems with community laboratories
  • Communication problems
  • Uncertainty of the process
  • Need for eligibility criteria

Impact on role of health-care professionals:
Hospital staff
  • Workload issues
  • Decreased patient interaction
Community staff
  • Increased workload
  • Increased job satisfaction
  • Accommodating schedules
Main reference: Stevens et al. 200655
Canada
Linked references: Stevens et al.,56 Stevens et al.33
Perspectives: patients (children) and parents
Aim: to examine the perspectives of children with cancer (and their parents) on a home chemotherapy programme
Methodology: not reported
Sampling: convenience sampling within a crossover RCT to recruit parents and children to the study following a 6-month period of home chemotherapy (some chemotherapy treatments had to be delivered in hospital; blood work took place in community laboratory)
Population: 23 families, of which five were single-mother families
24 individual parent and 14 individual child interviews took place
Overall: 19 mothers, 5 fathers, and 14 children over 6 years took part. Average child age was 12 years
Demographics reported in full paper
Data collection: semistructured interviews asking about advantages and disadvantages of home chemotherapy, patient preference and how setting affected daily life were recorded and transcribed
Place of interview was chosen by the participants and most took place in a private office in the hospital
Descriptive exploratory content analysis. Transcripts read line by line by two researchers. Memos created independently to record analytic insights, coding ideas and key points
Data collected in a table according to common topics of discussion – using exact wording from participants
Using inductive reasoning, data organised into categories that reflected emerging themes
Compared raw data with themes to note similarities/differences and make comparisons
Discussion and consensus was used to merge the categories from each researcher
Five main categories:
  1. Financial and time costs
  2. Disruptions to daily routines
  3. Psychological and physical effects of home chemotherapy
  4. Recommendations and caveats
  5. Preference for home chemotherapy
Conclusions: when home chemotherapy was compared with hospital clinic-based chemotherapy, parents reported fewer financial and time costs and less disruption to their work and family schedules, and children reported more time to play/study, improved school attendance, and engagement in normal activities. Although some parents felt more secure with hospital chemotherapy, most found it more exhausting and stressful. At home, children selected places for their treatment and some experienced fewer side effects. Although some co-ordination/communication problems existed, the majority of parents and children preferred home chemotherapy
Main reference: Taylor 2008,24 Ph.D. thesis
UK (England)
Linked references: Taylor et al.,110 full paper
Perspectives: patients; carers; health-care professionals
Aim: to evaluate the perspectives of health-care professionals, patients and carers on ambulatory cancer care developments
Methodology: mixed-methods approach using triangulation, underpinned by postmodern and social constructionist approaches
Sampling: participants were identified through a mixture of convenience and purposive sampling
Population:
Health-care users:
Home chemotherapy users (n = 3)
Nurse-/pharmacist-led clinic receiving capecitabine (n = 3)
Chemotherapy day-unit users (n = 3)
Carers (n = 2)
Focus groups including patients and carers (n = 2 groups)
Health-care professionals:
Pharmacists; commercial home-care company; nurses (district and specialist); GPs; consultants; multidisciplinary group
Data collection: focus groups and interviews conducted by the practitioner-researcher
Most were recorded and transcribed, field notes taken during focus groups. Focus groups were conducted early on and used to develop the research
Thematic framework analysis: familiarisation; identification of thematic framework; indexing; charting and mapping; interpretation. Focus group data used to develop framework for analysis and structure the interviewsThere was a continued drive by the government to move treatments from day-case hospital settings to outreach ambulatory care settings including cancer. Patients required flexibility throughout their journeys, hospital infrastructure and a collective experience with other patients. These could be lost through outreach ambulatory care developments. Health-care professionals identified a lack of professional and physical capacity to deliver ambulatory care as expressed in the policies

5-FU, 5-fluorouracil; MCU, mobile chemotherapy unit; QoL, quality of life; WHO, World Health Organization.

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