Table 40Generic Patient Experiences framework

Generic themeNarrative description
Patient as active participantReflects the role of patients as potential active participants in their health care, co-creators and co-managers of their health and use of services; responsible for self-care, participators in healthcare, shared decision-makers, self-managers, risk managers, life-style managers. Confidence in self-management is critical. Associated with issues of power and control.
Responsiveness of services -an individualised approachNeeding to be seen as a person within the healthcare system. The responsiveness of health services in recognising the individual and tailoring services to respond to the needs, preferences, and values of patients, taking into account both shared requirements and individual characteristics (such as individuals’ expectations of service cultural background, gender, and subtle issues such as preferences for humour). Includes how well clinical needs are met (for example pain management) and evaluation of how well services perform from a patient perspective.
Lived experienceThe recognition that individuals are living with their condition and experiencing it in a unique way, that family and broader life need to be taken into account, and that all of these aspects of lived experience can affect self-care. Taking into account individual physical needs and cognitive needs because of condition. Everyday experiences, hopes, expectations, future uncertainty, feelings of loss, feelings of being morally judged, feelings of blame. Some of these experiences originate ‘outside’ of the health care system but are brought with the patient into the health system; other experiences may be affected by attitudes and expectations of health professionals.
Continuity of care and relationshipsInitiating contact with services, interpretation of symptoms, co-ordination, access (barriers to), and availability of services, responsiveness of services, feelings of abandonment (when treatment ends or support is not made available). Being known as a person rather than ‘a number’. Trust in health care professional built up over time. Recognition/questioning of expertise of health care professional. Respect, including respect for patient’s expertise. Partnership in decision-making. Issues of power and control.
CommunicationNeeding to be seen as an individual; communication style and format (e.g. over telephone or in person), skills and characteristics of health care professional; body language (which can convey different information from that spoken); two- way communication and shared decision-making; compassion, empathy; the importance of the set up of consultation (for example appropriate time for questions, appropriate physical environment, number of peoples present). Listening, paying attention to the patient. Enabling questions and providing answers.
InformationInformation to enable self-care and active participation in healthcare, importance of information in shared decision-making, tailored information to suit the individual, patient wanting/not wanting information, timely information. Sources of information, including, including outside the health service (for example peer support, internet). Quality of information. Sources of further information and support. Developing knowledge and understanding, making sense of one’s health.
SupportDifferent preferences for support: Support for self-care and individual coping strategies. Education. Need for emotional support, need for hope. Responsiveness of health care professionals to individual support needs (may vary according to gender, age, and ethnicity). Importance of peer-support, groups, voluntary organisations. Practical support. Family and friends support. Role of advocacy. Feeling over-protected, not wanting to be a burden.

From: Appendix B, Thematic qualitative review: scoping report

Cover of Patient Experience in Adult NHS Services: Improving the Experience of Care for People Using Adult NHS Services
Patient Experience in Adult NHS Services: Improving the Experience of Care for People Using Adult NHS Services: Patient Experience in Generic Terms.
NICE Clinical Guidelines, No. 138.
National Clinical Guideline Centre (UK).
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