Receiving Bad News: A Thematic Analysis of Stroke Survivor Experiences

Abstract

Background:Breaking bad news to patients may be required in service provision to stroke survivors. While challenging, it may be critical to the retention of optimism and participation in rehabilitation.Objectives:To explore the experience of stroke survivors when receiving bad news (RBN) from medical practitioners.Methods:Data were obtained via 1:1 interviews conducted at stroke support groups with survivors at least 12 months into recovery and subsequently transcribed for thematic analysis and coded using NVivo.Results:Eight of 10 participants experienced RBN, and 2 participants did not. The themes of being “lucky to be alive” and waiting for “delayed information” were expressed by all participants early in the interviews. Three sub-themes emerged and were labelled alliance, dissent, and dissatisfaction, each with a further 3 contextual themes. The perception of RBN was marked amongst the dissent and dissatisfaction groups, with the latter reporting negative implications for their rehabilitation as well as negative emotions, such as anger and anxiety. The perception of a poor-quality relationship with medical practitioners was said to impede rehabilitation and recovery processes. The dissent group was characterized by initial disbelief after RBN and consequently poorer long-term outcomes, whilst the Alliance group experienced very good quality of care due to existing personal knowledge and therefore did not perceive RBN during their early medical meetings.Conclusions:In the period soon after their stroke, survivors required their medical practitioners to not only communicate knowledge and information, but also needed validation of their hopes and fears for the future from an empathically attuned clinician.

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

“…The 28 included studies were conducted in eight different countries: nine in the USA, 16 24-31 six in the UK, 12 17 22 23 32-34 five in Australia, [35][36][37][38][39] three in Canada, [40][41][42] two in Italy, 43 44 one each in Sweden 45 and Turkey, 46 and one in Canada and France 20 21 (see table 1). Included studies most frequently came from the stroke literature (n=10), 22-24 27 32 33 35 36 39 45 while similar numbers came from TBI (n=6), 20 21 25 26 29 30 42 SCI (n=5) 28 40 43 44 46 and multiple neurological conditions (n=5), 12 17 34 37 41 with a minority from the brain tumour literature (n=2).…”

“…20 43 46 Complaints included HCPs not being proactive in providing information 27 42 or not providing timely information. 20 21 26 39 Patients and caregivers described negative emotions associated with not receiving information including frustration, 20 21 29 43 worry, 39 caregiver stress, 43 delay in acceptance and adjustment, 42 and decreased trust in, and poorer relationships with, their treating HCPs. 29 42 Consistency in approach and language across different HCPs was viewed as essential, with concerns raised when different professionals provided incongruous information.…”

“…33 Some studies, particularly those involving stroke survivors, suggested that some patients could reject or deny information about recovery provided when they were not ready to hear it, particularly where it was perceived to be negative and challenged their hopes of returning to their previous lifestyle 22 23 33 39 46 : I just thought, I'll be all right, I'll be all right… the people told me that you will get aphasia and that you're going to have that for the rest of your life and I thought, yeah, I'll be over that in a couple of weeks' time, and never did [get over it]. (Patient who had a stroke) 39 Some HCPs felt that the most important time to provide information was during rehabilitation (although of note, no studies included the rehabilitation of patients with brain tumours), when patients receive therapy to help them regain their independence, with some suggesting 'drip-feeding' it over time, 17 37 40 or providing it in the context of a formal meeting 17 : In the back of your mind, you've got some rough plan of 'I don't think she is really going to ever get functional verbal speech' so you do your other stuff along the way to try and bring them to that point as well. (Speech and language therapist) 37 In some cases, the practicalities of discharge forced therapists to discuss recovery towards the end of rehabilitation, 22 23 particularly where a patient's home environment was deemed unsuitable or their care needs had increased 12 32 :…”

“…As a result, they were concerned about the impact negative information could have on patients' mood, hope and subsequently motivation to participate in rehabilitation 12 17 24 33 34 40 ; a feeling which was echoed by some patient and caregiver participants. 39 HCPs feared that a loss of motivation could result in a negative prediction becoming a self-fulfilling prophecy: I just don't want to sort of squash their hope … they sort of give up a lot and also they don't maintain their home exercise programme. (Occupational therapist, community rehabilitation) 43 These fears could result in HCPs being unwilling or hesitating to discuss recovery with patients and families.…”

“…16 Where information about recovery was provided, patients and families felt that HCPs should deliver it with compassion and empathy, 20 21 27-29 38 39 46 as well as positivity, allowing them to maintain hope and motivation 20 21 28 30 36 38 39 46 : I think they need to be more in empathy with the patient rather than just a number. (Patient who had a stroke) 39 They wanted positive messages, including a focus on the function the patient retained, rather than what they had lost 28 38 : I would prefer the initial statement to be addressing the positive aspect of the condition, e.g., 'you are capable of doing almost all you did before the accident'. (Patient with SCI) 28 This presentation of 'good news' alongside bad news was observed, 32 and also acknowledged as a strategy by some HCPs.…”