The study used mixed methods of data collection: qualitative methods for interviewing and diary/informal record keeping as well as validated measurement tools for assessing health and social circumstances of patients. Although the sample size was small, these tools provided a standardised base to establish and compare the needs and profiles of the patient and carer population.
4.3.1 Data collection from nurses
Semi structured, face to face, interviews with each participating nurse were used at baseline and at 9 months. The data collection tools are presented in Appendix 3 .The first and last interviews gathered data on:
Their professional history and education,
Their patient caseload and other work activities,
Their working practices,
The team and organisation where they are located,
Their work activities, collaboration and communication methods with other professionals, organisations and services,
Their views on nurse case management and their job,
Any other issues of importance to them.
Brief structured telephone interviews at monthly intervals were undertaken with each nurse to gather data on the nurse’s experience during the
intervening month and give details on their contact and activities with the 5 patients in that time. Each study nurse was asked to complete a generic diary to summarise their activities and the time spent on each one for every day of a typical working week. It was intended that this diary should be
completed three times, once in the first month of the study, one in month 5 and once in the final month. In the event and following piloting, this was too time consuming for the nurses to do, so it was completed in months 1 and 9. The diary followed a basic template which could be adapted to the way individual nurses kept diary records.
Nurse case managers were also asked for copies of any internal documents relevant to their case management activities and job.
Data reported by patients/carers were checked through nurse case manager interviews at the start and end of the observation period. Information on tests conducted by nurse case managers was also obtained by this method and entered into the database to further inform the type of services
delivered to patients. Plans for nurse case managers to keep diaries of their activities with each patient recruited to the study were dropped. Piloting of the diary (which asked the nurse case managers to record all visits, telephone calls, meetings, correspondence etc) showed the task to be too time-consuming and onerous.
Documents received were listed. Data from interviews were recorded and transcribed and stored in NViVO qualitative data handling software. Tapes were then deleted. Quantative data on nurse characteristics, caseload, nurse activities with patients, and recorded services used by the patient were entered into an SPSS database. All participants were given
identification numbers and no personally identifiable data were stored in either databases.
4.3.2 Data collection from patients
Semi structured monthly interviews with each patient (face to face at baseline, at four and half months and at 9 months were undertaken; by telephone for the other months) to gather data on:
How the patient was identified as needing the nurse case manager service,
The patient’s health and personal circumstances,
The range of activities the nurse carries out with the patient, together with the amount of time in contact with the patient,
The services received and resources used by the patient and their carers, including informal care, and care and support received that is not arranged or coordinated by the case managing nurse.
As part of these interviews validated tools were used to measure: quality of life (EQ-5D TM, Brooks 1996), dependency (Barthel Index of Assessment of Activities of Daily Living, Mahoney and Barthel 1965), ability to self care (Stanford Self Efficacy Scale, Lorig et 1989), cognitive impairment (6CIT, Brooke and Bullock 1999), and depression (Geriatric Depression Score, Sheikh and Yesavage, 1986). In addition, with permission, questions from the Picker Institute patient survey were adapted to measure patient experience.
The first and last interviews included all of the measures. It was anticipated that these interviews could take some time. As some patients were likely to
be frail, these interviews were offered in sections to be conducted on two different days. Patients were provided with informal diaries structured to help patients to remember and record key events and encounters during the study period. The patients were encouraged to use this diary as an aide memoire when being interviewed by the researcher at different points in the nine month data collection period. Voice recorders were offered if preferred, instead of writing a diary. The data collection tools for the patients are given in Appendix 4
Data from interviews were recorded and transcribed and stored in NViVO qualitative data handling software. Tapes were then deleted. Quantative data on patient demography, health conditions, service use, and
assessment tools were entered into an SPSS database. All patients were given identification numbers and no personally identifiable data were stored in either databases.
Patients were asked for consent for their GP to provide the research team with information from their medical records about their health and social care service use, consultations with the GP and treatments for the 12 months before they entered the study and nine months after they entered the study (21 months in total). They were still able to take part in the study if they did not consent to this element.
Data were recorded on a standardised form, with only the research identification number and then entered onto an SPSS database. As the study was adopted by the Primary Care Research Networks covering the study sites, participating general practices were eligible for service support costs for undertaking the data extraction from records.
4.3.3 Data collection from carers
Semi-structured interviews were undertaken with participating carers at two points. The first took place soon after the patient joined the study and the carer consented. The second interview occurred at the end of the nine months of the patient’s participation. A topic guide for areas to be covered in this interview included: the types of care-giving the carer performed, perceptions of the nurse case management and of health and social care services offered and used. The Caregivers Strain Index was also
administered. The data collection tools for carers interviews are given in appendix 5
Data from interviews were recorded and transcribed and stored in NViVO qualitative data handling software. Tapes were then deleted. Quantative data from the Caregivers Strain Index were entered into an SPSS database.
All carers were given identification numbers and no personally identifiable data were stored in either database.
4.3.4 Data collection from key informants
Semi- structured interviews were undertaken with key informants either face to face or by telephone as preferred. An aide memoire for the topics to be covered in this interview included: perceptions of different types of
nurse case management, local influences on the development of nurse case management, experience of the contribution and impact of nurse case management, factors supporting or inhibiting nurse case management. Key informants were also asked for copies of any internal documents relevant to their case management activities and job. Documents received were listed.
Data from interviews were recorded, transcribed, and stored in NViVO qualitative data handling software. Tapes were then deleted.
4.3.5 Nurse attrition and reasons for missing interviews Seventeen nurses were approached to take part in the study (table 10). Of these 16 initially consented (with one person not consenting due to health problems).
Table 10. Nurse recruitment to study Number
Approached 17 Recruited/consenting 16
Withdrawals 4 Remaining in study 12
Following initial consent one nurse changed her job and withdrew, one decided the commitment was too great because of her work load and one withdrew due to problems with her health. A fourth nurse who had initially consented did not then actively participate in the study and did not respond to any further contact. Her right to withdraw without giving reason was respected, and she was replaced by another nurse. The reasons for declining to take part or withdrawing from the study soon after consenting are summarise in table 11.
Table 11. Nurses reasons for declining or withdrawing Reason
Work load Job change Health Unknown Declining to
take part
1
Left study 1 1 1 1
During the course of the data collection two nurses left their jobs, and thus the study.
Among those nurses who took part in the study there were a number of personal and organisational factors that meant full participation each month of the study was not possible. Only two of the nurses were available for interview in all 9 months of the study (1 community matron, one nurse specialist). Ten of the nurses could were not available for interview for one or more months of the study because of lack of time and workload,
particularly covering for the leave or sickness of other team members. Six
of the nurses were not available for at least one month of the study because of annual leave: this was usually because taking annual leave usually led to an intensively busy period before and after the leave. Sick leave was another significant factor during the study, with 5 of the nurses having at least one month where they were unavailable because they were off work sick. Other significant issues were compassionate leave (2 nurses), study leave and study commitments (5 nurses) and leaving their job during the course of the study (2 nurses). Six of the nurses were unavailable for interview of at least one month for unknown reasons (table 12).
Table 12. Reasons for nurses non- availability for interview in 1 or more months
Reason Workload
pressures
Job change
Health Study Leave (annual &
compassionate)
Unknown
Community Matron
3 2 3 3 1
District Nurse
3 1 2 1 1 1
Nurse
Specialist 2 1 2 2
Other 2 1 1 2 1
4.3.6 Summary of data collection undertaken
In total 118 people were recruited to the study: 18 withdrew and ten died.
A total of 782 interviews were undertaken in the case study phase (table 13).
Table 13. Total data collection for study
Interviews conducted with Number
Patient 352 Nurse 391 Carer 20 Stakeholders 19 Total interviews conducted 782
The case study phase was challenged by the slow process of recruitment and difficulties in retaining both nurses and patients for nine months. While this created difficulties for data collection, it reflected one of the strengths of case study research (Gomm et al 2000) in that it was grounded in the realities of the nurse case managers, the patients and also the service managers. The case study methodology allowed for exploration of the complex interrelationships, the multiple perspectives on the same phenomena and how the focus and delivery of the case managers’ work changed and developed over time (Yin, 2003).