Experiences and views of receiving and delivering information about recovery in acquired neurological conditions: a systematic review of qualitative literature

Abstract

ObjectiveTo review and synthesise qualitative literature relating to the views, perceptions and experiences of patients with acquired neurological conditions and their caregivers about the process of receiving information about recovery; as well as the views and experiences of healthcare professionals involved in delivering this information.DesignSystematic review of qualitative studies.Data sourcesMEDLINE, Embase, AMED, CINAHL, PsycINFO, Web of Science and the Cochrane library were searched from their inception to July 2019.Data extraction and synthesisTwo reviewers extracted data from the included studies and assessed quality using an established tool. Thematic synthesis was used to synthesise the findings of included studies.ResultsSearches yielded 9105 titles, with 145 retained for full-text screening. Twenty-eight studies (30 papers) from eight countries were included. Inductive analysis resulted in 11 descriptive themes, from which 5 analytical themes were generated: the right information at the right time; managing expectations; it’s not what you say, it’s how you say it; learning how to talk about recovery and manage emotions; the context of uncertainty.ConclusionsOur findings highlight the inherent challenges in talking about recovery in an emotional context, where breaking bad news is a key feature. Future interventions should focus on preparing staff to meet patients’ and families’ information needs, as well as ensuring they have the skills to discuss potential recovery and break bad news compassionately and share the uncertain trajectory characteristic of acquired neurological conditions. An agreed team-based approach to talking about recovery is recommended to ensure consistency and improve the experiences of patients and their families.

Palliative Care Needs Among Jordanian Women Living with Stroke: A Descriptive Phenomenological Study

“…In this study, not using a therapeutic method when telling bad news left the women in a state of confusion and shock. In the same context, a systematic review of 30 studies from eight countries indicated that to ensure emotional recovery and improve the experiences of stroke patients and their families, health staff should adopt an approach based on breaking bad news compassionately, and preparing the staff to meet the information needs of patients and their families [11].…”

“…Some participants indicated that the pain affected their mood and socialization with others. Participant woman (11) said: "I quickly became angry because of the pain, when the pain and numbness started on the left side of my body, I lost control of my mood, and I don't want to deal with anyone. "…”

“…Accordingly, Burton, Forster [11] emphasized the need to assess the palliative care needs of patients with stroke and respond appropriately to meet these needs. Thus, the purpose of the current study is to explore the palliative care needs among women who suffer from stroke in Jordan.…”

Understanding the Professional Care Experience of Patients with Stroke: A Qualitative Study Using In-Depth Interviews

“…In addition, the professional must know how to convey the information, providing information about the disease, and conveying words of encouragement in the message [ 41 ]. In the systematic review by Burton et al [ 42 ] regarding the experiences of patients with acquired neurological conditions and their caregivers about the process of receiving information about recovery, the importance of providing the right information at the right time is described, together with managing expectations and the way in which the message is given, learning to talk about recovery, and managing emotions in an uncertain context such as the recovery of acquired neurological processes. Communication between the stroke patient and healthcare professionals helps to adjust patients’ expectations towards recovery during rehabilitation [ 43 ].…”

Integrating Palliative Care Into Physiatric Care

“…He commits to thoughtful consideration of the patient’s previous experiences, current stressors, and potential desire for social supports during conversations. He will elicit and honor the patient’s preferences for type and amount of information discussed and allow the patient opportunities to initiate conversations based upon his desire for information 29,30 . See SDC Appendix 2 (Supplemental Digital Content 2, http://links.lww.com/PHM/B594) for an approach to spinal cord injury prognosis disclosure and palliative care communication skills relevant to setting goals.…”