Using focus groups to seek the views of patients dying from cancer about the care they receive

Abstract

Purpose

The prime purpose of the study was to investigate whether focus groups were a practical way of seeking the views of dying people and whether the information collected added to that collected by more established methods.

Design

A sample frame of Macmillan nurse patients was collated from which three cluster samples were randomly selected to participate in focus groups. The focus groups were structured with an experienced facilitator and recorder to answer three key questions.

Setting and participants

Patients of Macmillan nurses in three NHS Trusts in West Yorkshire who were living at home with incurable cancer. They were aware of their condition and were willing to participate.

Main variables studied

The three key questions were; what kind of help are you currently receiving? What sort of help do you want? Of the kind of help you are receiving what kind is most important to you?

Results

17 patients participated in three focus groups. Participants were generally fairly able and living with spouses or relatives. They were of varying age with different types and duration of cancer. They were receiving a range of health and social services of varying importance to them. More help was particularly wanted with support for daily living, support from specialist cancer nurses, help getting out and with housework. Macmillan nurses and general practice services were highly rated in some but not all three trust areas.

Conclusions

We propose that focus groups are a practical way of collecting information about dying patients that can complement other sources of information in planning and auditing the provision of care.

Introduction

Dying people have complex physical, social and emotional needs. ¹ Health and social services can make an important contribution to the quality of life of dying patients and their families, enabling them to remain at home. ^{1 , 2} Dying people spend most of their final year of life at home, but the majority die in hospital. ^{3 , 4} There has been an increase in the proportion of dying patients admitted to hospital in the twelve months prior to death. ^{3 , 4} There is now the opportunity to improve care and support for dying people through better integration of hospital, community and voluntary services, using the new framework of commissioning by Primary Care Groups and the national emphasis on more integrated planning and delivery of services. ⁵ Primary Care Groups are geographically based collections of general practices with developing infrastructure for the dual role of planning the provision of primary care and community services and commissioning secondary and tertiary services. ⁶

Palliative care seeks to improve the quality of life of dying people through relieving distressing symptoms and providing social and psychological support. ¹ Palliative care services should also seek to support carers and family. ¹

In the United Kingdom specialist palliative care services are provided by a mix of statutory and voluntary organisations. Voluntary organisations fund Macmillan nurses, Marie Curie nurses, day and residential hospices as well as in some areas outreach teams. Macmillan nurses are specialist cancer nurses who assess and co‐ordinate care for dying people. They frequently organise and provide training and support to general hospital and community health staff. Marie Curie nurses carry out nursing care to dying people in their own homes on a session basis. There is, in the United Kingdom, a medical speciality of palliative medicine, consisting of physicians working across hospitals, hospices and the community. Hospices provide a range of inpatient, day and outreach services for dying people.

Since palliative care is about quality of life rather than quantity, measuring outcome is particularly problematic. A key measure must be patient satisfaction. However, relatively few studies have directly sought the views and values of patients, their carers or relatives. ^{4 , 7} , 8, 9, 10, 11, 12, 13, ^–14 Using structured enquiry these studies all suggest that patients have needs that are not met by available services. This may be due to a number of reasons. Health and social services staff may be unaware of the range and severity of the needs of the dying person and their family. Staff may be constrained in what help they can provide. Staff may hold different priorities about what care they should provide and how it is provided to those of the client or client’ family.

Three studies have highlighted the differing views held by dying people, to their carers and health care professionals. Higginson and colleagues found that patients rated pain and symptom control, and anxiety symptoms significantly lower than family carers did. ¹¹ In a later study Higginson compared a standardised rating scale between patients, relatives and support team staff. ¹⁴ There was good correlation between patients and staff for pain and symptom control, and family anxiety but poor correlation for communication and patient anxiety. Thorpe found that whilst most patients would prefer to die at home they die in institutions. ³

This paper describes a study commissioned by Calderdale and Kirklees Health Authority and carried out by the University of Huddersfield’s School of Human and Health Sciences to seek the views of dying people through focus groups.

The focus group is an approach developed by social scientists which is a form of group interview. ¹⁵ The topic of interests is set by the researchers but the data produced are determined by the interaction of the different participants in the focus group. Researchers act as observers and facilitators. The potential advantage of the focus group approach over the structured questionnaire is that it is not bounded by preconceived ideas and professional views of important domains for data collection. Participants of the focus group set the domains for data collection. The interactive nature of the focus group allows participants to comment, build on and judge emerging issues. Issues and ideas may emerge that would not be articulated in individual interviews. ¹⁶ However, the focus group approach is dependent on a fairly open and balanced interchange between participants and facilitator and also on accurate recording. We decided to use the focus group approach for two reasons. We were keen to see if it was an acceptable and practical approach to seeking the views of an ill and vulnerable group. Secondly, to investigate whether the focus group approach enables a wider range of issues to be explored than in the individual interview approach of existing research studies.

This approach, to our knowledge has not been used before in seeking the views and values of dying people, although it has been used by one of the researchers to seek the views of residents of residential and nursing homes in setting standards. ¹⁷

Method

The three NHS trusts within Calderdale and Kirklees Health Authority were selected as treatment centres for sampling. Each trust provides both hospital and community services and covers one of the natural communities of Calderdale, Huddersfield and Dewsbury.

All three NHS trusts agreed to take part in the study and ethics committee approval was obtained from each trust and the University of Huddersfield Ethics Committee.

A sample frame was identified of people dying from cancer known to each trust’s Macmillan nurses. These were cancer patients who:

• were known to the Macmillan nursing services (including both hospital and community based Macmillan nurses);

• were known to have cancer for which it was felt that a cure was most unlikely;

• were living at home;

• were aware of the terminal nature of their illness.

Ten patients were randomly selected from each sample frame. Selected patients were visited by their Macmillan nurse who discussed the survey and asked their permission to be contacted by one of the research team. Basic demographic, circumstances and functional ability data were collected which included: age, gender, marital status, diagnosis, patients’ home circumstances, identity of main carer, mobility and functional ability. If the patient wanted to take part they were visited by one of the research team who explained the purpose and nature of the study and asked if they wished to attend a focus group. If they agreed they completed a consent form and identified their transport needs. The patient’s general practitioner and any consultant involved were informed of the patient’s willingness to participate in the study and asked to indicate if they had any objections to their doing so.

The three focus groups were held at hotel venues, one for each of the three trust areas. All venues were accessible for patients in wheelchairs. Refreshments were provided. A nurse was in attendance at all focus groups. Focus groups lasted one and half hours with a short break. A senior member of the research team acted as facilitator and another member as recorder. The recorder took detailed notes and the flipcharts were retained for analysis. Following the focus group the two researchers went through the notes and flipcharts to agree the accuracy of what had been recorded with what they perceived to have taken place.

Members of the focus group were asked for their views on the following three questions:

• What kind of help are you currently receiving?

• What additional help do you want now you are back home?

• Of all the kinds of help you are receiving at the moment, what kind is the most important to you?

Members of the group recorded their responses individually. After all members of the group had completed their lists their responses were written up on a flip chart that everyone could see, and checked for accuracy. The list was discussed and each item voted on by participants using a simple voting procedure to determine if the item was important and relevant to the group in general.

Results

Attendance at focus groups

Twenty‐seven patients agreed to participate in the study of which 17 attended the three focus groups which were held between 29 November 1996 and 21 March 1997. The reasons why patients did not attend were acute illness (five patients), in hospital (two patients), on holiday (one patient), and no reason or backed out (two patients).

Characteristics of patients

Table 1 summarizes the characteristics of 17 patients attending focus groups. The majority were female (59%). No participants lived alone. The main carer was a spouse for eight patients and a son or daughter for a further eight patients. The median age was 67 years, with the majority between 50 and 74 years of age. Six participants were between 25–49 years and two were over 75 years. There was a range of diagnoses of the site of cancer; most common was breast cancer (four patients) and bowel cancer (2 patients). There was a considerable range in year of diagnosis of cancer but the majority had been diagnosed less than one year previously. Although participants had a range of functional abilities, all but one were mobile and fairly or very able.

Table 1.

 Characteristics of patients attending focus groups

Help participants were receiving

Patients were receiving a wide range of health services, social services and private help from outside the family and immediate carers as shown in Table 2. There were differences between the three focus groups. Members of all three focus groups received help and support from specialist cancer nurses, had cleaners and received specific state benefits. Patients in Trust C focus group did not feel they were getting specific help from their general practitioners and patients in Trust B focus group did not feel they were getting specific help from district nurses.

Table 2.

 The range of services patients were receiving

Additional help wanted by patients

Patients wanted a wide range of help. This varied between the three focus groups. Table 3 sets out the main findings. There was agreement across all focus groups about wanting help getting out, with housework and with support from Macmillan nurses. There was less agreement about wanting equipment, help with daily living, having something to do, help to give family time off and information about benefits. Most of what patients wanted was practical help that affected daily living.

Table 3.

 Additional help wanted by patients

The comments made at the focus groups were illuminating:

‘I make myself go out every day. These four walls creep up on you. I stayed in for two months after the treatment and I got to a stage where I didn’t want to go out. My wife forced me to go out.’

‘You don’t want to vegetate at home. I’m fed up with sitting on the settee at home. I’m too house‐proud but I can’t help much.’

‘I’d rather be in a hospice than upset my family.’

‘I want to give my family time off. I feel I’m stealing their time.’

‘I get attendance allowance. That goes to my daughter who I live with. That’s all I get. It would be helpful if the hospital could give a list of what you might be able to claim. You want them to give you a list because you don’t like to ask in case they think you are grabbing and anyway people don’t know what questions to ask.’

Patients experience of the focus group

Although patient experiences of the focus groups were not formally sought, some feedback was forthcoming at the end of the focus groups when researchers talked informally to patients, and later on when Macmillan nurses fed back patients’ comments to the researchers. Patients appeared to welcome the opportunity to discuss their experiences of their illness, they found the venues accessible and satisfactory, and they did not find the focus group too strenuous.

Discussion

This was a small study, consequently the results needed to be interpreted with care.

The method which involved randomly selecting people known to Macmillan nurses sought to select patients who were representative of patients known to specialist services with a range of severity of condition. Although the people attending the focus groups differed in age, gender and diagnosis they were generally able and mobile. They are likely to be less severely affected than many patients dying from cancer are. They may well differ from the population of individuals known to services who are dying from cancer in important factors such as needs for social and health services, and experiences and expectations of services.

The focus group approach has advantages and disadvantages compared to other methods of enquiry, such as structured, semi‐structured and open ended interview questionnaires, written questionnaires, or a combination of approaches.

The main advantages of a focus group approach are that a questionnaire framework does not restrict the views sought. For a topic area such as palliative care where patient needs cover a wide range of physical, psychological, social, financial and environmental issues this is likely to be particularly useful. The approach is based on social interaction between individuals who have shared similar experiences and so can give a richer and more measured view of issues. The approach allows a consensus to be negotiated about the depth of view about particular issues. In addition, the approach can be used to assess the acceptability and validity of a structured questionnaire.

There are a number of disadvantages of focus groups compared to other approaches. They require skilful facilitation and accurate recording. In focus groups the researcher has less control over the direction, flow and contribution of individuals in data production. This may have negative as well as positive consequences. Inexperienced facilitation and poor recording may give rise to bias and misrepresentation of views. One or two individuals may either disrupt the group or influence adversely views expressed by other members. ¹⁵ In‐depth individual interviews may be more likely to elicit the subject’s true views that may not be fully expressed in a focus group setting.

Recording, as with individual questionnaire interviews, must be internally validated. In this study there were two aspects to validation. Firstly, through the use of flipcharts and voting during the focus group to check key issues were accurate elicited from the participants. Secondly, by facilitator and recorder jointly agreeing, immediately after each focus group, that recorded data accurately reflects what has gone on.

There are limitations to extrapolating the findings of focus groups to other individuals in similar circumstances. Structured questionnaire surveys, providing there is adequate sample size, allow statistical analysis and extrapolation to the identified population of interest.

Our results highlighted different issues to those in studies using structured questionnaires. Published surveys have emphasised the importance of place of death and symptom control. ^{3 , 4 , 7} , 8, 9, 10, 11, 12, 13, ^–14 Patients in our focus groups emphasised the importance of practical help with daily living, help for the family and carers, support to be more independent and to get out, more information about a wide range of issues including benefits.

Although the small numbers in each focus group make comparisons between them limited, the difference in rating of general practitioners is strikingly different. Other studies have found dissatisfaction with doctors and general practitioners. ^{7 , 11} However, one focus group identified general practitioner as an important and highly valued service but another focus group was critical of the lack of involvement of general practitioners in their care. It is interesting to note that in the NHS trust area of the former that a large well‐developed community based Macmillan nurse service has developed which works closely with general practitioners. There is no specialist in palliative medicine and a traditional inpatient based hospice. Whereas in the latter NHS trust area there is a consultant in palliative medicine, a large and influential hospice providing a range of inpatient and outreach services, but only two Macmillan nurses based in an oncology unit.

General practice, particularly in the context of the development of primary health care groups, has an important contribution to make to the care of patients dying from cancer. We believe that focus groups are a practical and acceptable way of collecting information about the views of dying patients which can complement other approaches to information collection for the planning and auditing of the care provided to dying patients by primary health care services.

Acknowledgements

We are grateful to the advice and support of Judi Goddard and Kathryn McHarg of Calderdale and Kirklees Health Authority.