Preferences for receiving information among frail older adults and their informal caregivers : a qualitative study

Background: Patient involvement in clinical decision making is increasingly advocated. Although older patients may be more reluctant to become involved, most do appreciate being informed. However, knowledge about their experiences with and preferences for receiving information is limited, and even less is known about these topics for frail older people.

Objective: To explore the experiences of frail older people and informal caregivers with receiving information from health care professionals as well as their preferences for receiving information.

Methods: We conducted semi-structured interviews with frail older people (n = 11, 65–90 years) and informal caregivers (n = 11, 55–87 years). Interviews were transcribed verbatim and analysed using a grounded theory approach.

Results: Frail older people and informal caregivers varied in their information needs and discussed both positive and negative experiences with receiving information. They preferred receiving verbal information from their physician during the consultation; yet would appreciate receiving brief, clearly written information leaflets in addition. They employed several strategies to enhance the information provided, i.e. advocacy, preparing for a consultation and searching their own information. Contextual factors for receiving information, such as having enough time and having a good relationship with professionals involved, were considered of great importance.

Conclusions: Participants described a wide range of experiences with and preferences for receiving information. However, even if the information provided would meet all their preferences, this would be of limited significance if not provided within the context of an ongoing trusting relationship with a professional, such as a GP or practice nurse, who genuinely cared for them.