Information needs of patients with chronic diseases and their relatives for web-based advance care planning: a qualitative interview study

Abstract

Background Advance care planning (ACP) enables persons to identify preferences for future treatment and care, and to discuss, record and review these preferences. However, the uptake of ACP among patients with chronic diseases is relatively low. Web-based ACP programs can support patients and their relatives in ACP. However, information needs of patients and their relatives for ACP are unknown. The aim of this study is to explore information needs of patients with chronic disease and their relatives for web-based ACP. Methods We conducted semi-structured interviews with patients with chronic diseases and relatives at their home or at the study center. In three cases, the patient and relative were paired since they preferred to be interviewed together. We asked about information they would search for when to start with ACP, where they would search for information, what search terms they would use on the Internet, and what content and information they would consider important on an ACP website. The interviewer asked participants to clarify their responses during the interview. We used thematic analysis to analyze the interviewees’ responses. Results We interviewed nine patients with different chronic diseases including amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), chronic obstructive pulmonary disease (COPD) and kidney diseases, and seven relatives, namely partners or (adult) children. The interviewees were aged 24 to 80 years, nine were female and seven were male. Both patients with a chronic disease and relatives mentioned comparable information needs. Many interviewees indicated they would use the Internet to search for information about ACP. Mentioned search terms were “advance care planning”, “treatment plan”, “disease trajectory” and names of patient associations. Information needs concerned their disease trajectory and quality of life, medical treatment decisions, practical support in arranging care, the concept of ACP and guidance in ACP, communication of treatment and care preferences, peer support of others with chronic diseases, and information for relatives. Many appreciated encouragement of their healthcare providers to take a pro-active role in ACP. Conclusions We conclude that information needs for ACP included guidance in ACP, support in making decisions about medical treatment, and practical support in arranging care. We recommend adapting web-based ACP information to the information needs of patients and their relatives to increase its findability, uptake and usefulness.

The Web-Based Advance Care Planning Program “Explore Your Preferences for Treatment and Care”: Development, Pilot Study, and Before-and-After Evaluation

“…In an interview study, we identified information needs of patients with chronic diseases and their relatives regarding web-based ACP, such as the need for information about ACP and its relevance, the need for reliable information about their disease and (arranging) care, and the need for peer support, as well as search terms for finding ACP related information [ 10 ].…”

“…Finally, the scoping review helped to select appropriate outcome measures for the evaluation of the web-based ACP program, for instance, engagement in ACP, the program's usability, and the users' level of satisfaction with the program [6]. 2. In an interview study, we identified information needs of patients with chronic diseases and their relatives regarding web-based ACP, such as the need for information about ACP and its relevance, the need for reliable information about their disease and (arranging) care, and the need for peer support, as well as search terms for finding ACP related information [10]. During these meetings, the progress of the project, preliminary results, and planned next steps were discussed.…”

The Experiences of Close Relatives to Women with Chronic Obstructive Pulmonary Disease Stages III or IV: A Qualitative Study

“…Corbin and Strauss [ 35 ] state that it is important that healthy family members receive information about the sick person’s condition so that it can be incorporated into family life. Van der Smissen et al [ 36 ] conclude that information provided to relatives of people with chronic illness needs to be findable, useful and designed to support the ill person. Additionally, relatives emphasized that it was important to receive information about how to manage their situation and obtain information about where to go if they could not cope.…”

Consensus definition of advance care planning in dementia: A 33‐country Delphi study

“…In March 2019, the European Association for Palliative Care (EAPC) board approved a highly diverse task force on ACP in dementia (Table 1) with two aims: to conduct a Delphi study to (1) and data protection measures were taken as appropriate. The protocol of the Delphi study was registered at OSF 15 and in a trial registry (NL9720), 16 both on September 7, 2021.…”

“…The 43 elements (an extended and an abbreviated definition, 27 recommendations, and 14 elements of evaluation) were adapted to apply to dementia. The adaptations were informed by the task force member's expert understanding and by a total of 24 published review articles identified from 3 meta-reviews 11,17,18 in the protocol 15 ). Subsequently, four core team task force members (JTvdS, MN, LVdB, IJK) mapped the proposed adaptations to the 43 elements from the generic conceptualization 4 as "retain as is," "revise," or "delete," and three researchers also independently classified the adaptations as (1) "substantial revision" defined Next, the core team analyzed the agreed-upon and classified adaptations for dementia to identify themes.…”