Abstract

Aim:

Although there is a growing body of research literature on user perceptions of services for cancer, the specific topic of the responsiveness of services to the needs and preferences of individual patients and carers has not been explored in any depth. This study was designed address this gap in the literature and to inform policy, practice development and further research.

Methods:

This recently completed study took an exploratory approach and utilised qualitative research methods. Data were collected in in-depth conversational interviews with a purposive sample of 38 people treated for/living with cancer, and 26 of their carers. The focus of these interviews was patient and carer experiences of health and social care services that they received for cancer, with an emphasis on responsiveness and individualised care, and views on the ways in which services might become more responsive to individuals’ needs, preferences and values. Digitally recorded interviews were conducted in patients’ and/or carers’ homes with the aid of a flexible interview guide. Contextual data were also recorded. Data analysis ran concurrently with data collection and the interview guide evolved in line with themes emerging from the data. Interviews were transcribed, and analysed with the aid of the qualitative data analysis package ATLAS.ti. 

Sample:

Participants were 18 years of age or older and were recruited at a regional cancer centre, an acute trust covering a catchment area that ranged from inner-city to rural, and self-help/support groups in the North-west of England. Purposive sampling took account of age, gender, cancer type, ethnicity, distance between home and the regional cancer centre and other factors.

Findings:

Many participants tended to talk about the quality, rather than the flexibility and responsiveness, of services and some felt it was their duty to be as flexible as the services they received. Specialist cancer services and clinical nurse specialists were often cited as the most flexible and responsive services, although the communication skills of some junior oncology doctors were sub-optimal and access to nurse specialists was patchy. Day-case chemotherapy services at the regional cancer centre and outpatient appointment systems at general hospitals were lacking in flexibility and responsiveness. Speed of response was a prominent issue in relation to GP referral, investigations and receiving results. Participants had a range of preferences relating to continuity, involvement in treatment-decision making and making a choice of hospital/service. The issues of how services respond to carers/family, and manage transitions in care also came to the fore. Informal peer support, self-help/support groups, and buddies/key-workers can help to increase patients’ proactivity and assertiveness when interfacing with services.

Conclusions and implications for further research:

Services varied widely in terms flexibility and responsiveness, and individual performance made a great difference. Inflexibility and lack of responsiveness in specialist services related mainly to junior doctors’ inexperience/lack of power and/or to inadequate resources. Inequitable access to clinical nurse specialists according to cancer type has been noted in the recent Cancer Reform Strategy. The deterioration in outpatient appointment systems may relate to capacity issues exacerbated by government targets on urgent GP referrals; it seems possible that these targets have had unintended consequences and are not fit for purpose. A service user may wish to have a choice and/or negotiate about some aspects of care and at some points in his/her trajectory (e.g. discharge from follow-up) but remain passive in other contexts (e.g. decisions re initial treatment). Carers and family provide valuable support to patients, and may have needs and preferences of their own. Peer, group and professional support can foster assertiveness and proactivity in service users, and may be instrumental in promoting the flexibility and responsiveness of current and future services. 

Services and individual professionals need to be aware that service users may have preferences relating to a wide range of factors. Several opportunities for developing flexible and responsive services exist; these mainly relate to the role of the specialist nurse, new forms of follow-up, appointments systems and the process of outpatient chemotherapy. Many of the issues raised by our service-user participants could be investigated in observational research and/or interviews with health professionals.