Perspectives of patients with haematological cancer on how clinicians meet their information needs: “Managing” information versus “giving” it

Atherton, Kirsten; Young, Bridget; Kalakonda, Nagesh; Salmon, Peter

doi:10.1002/pon.4714

Cited by 11 publications

(13 citation statements)

References 35 publications

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“…One explanation is the manner in which the initial questions were used to elicit responses in our focus groups. Contrary to Bensing et al (2011), who explicitly asked their participants to formulate advice for patients and providers, and Atherton et al (2018), who prompted patients to talk about what information they received in the consultation, we asked our participants what they needed to be able to express their concerns. Therefore, we focused our study on support for concern expression and not on information provision.…”

Section: Ated) Interpersonal Communication Interventions Previous Rementioning

confidence: 99%

“…First, surprisingly, participants did not suggest that the behaviour of providers should change; the patients seemed to hold themselves responsible for concern expression. However, previous research concluded that patients believed that the responsibility of a successful consultation was held by the provider and the patient (Atherton, Youg, Kalakonda, & Salmon, 2018;Bensing et al, 2011). One explanation is the manner in which the initial questions were used to elicit responses in our focus groups.…”

Section: Ated) Interpersonal Communication Interventions Previous Rementioning

confidence: 99%

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Cancer patients' needs for support in expressing instrumental concerns and emotions

et al. 2019

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Introduction The aim of our study was to provide an overview of intervention guidelines on how to address patients' practical needs for support in expressing instrumental concerns and emotions regarding medical, psychosocial and practical topics. Methods Six focus groups of cancer patients and survivors (N = 39) were organised. An interview guide was created that consisted of three topics: (a) concerns, (b) needs for support, and (c) a Concern Prompt List. Using the framework method, the transcripts were coded and analysed in Atlas T.I. Results Patients prefer to receive practical and emotional support, help with preparation, prompts/cues, instructions on how to perform the behaviour (i.e., express their concerns or emotions), feedback, a different structure for the consultation and tailoring. Most of these techniques should preferably be delivered via interpersonal communication. Needs sometimes differ for instrumental concerns and emotions. Only some needs for support were exclusively related to instrumental concerns or emotions. The typical needs for support were not solely linked to the medical, psychosocial and practical topics. Conclusion Different needs to express instrumental concerns and emotions throughout the disease trajectory are categorised. These needs provide input for developing interventions to support concern expression.

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Section: Ated) Interpersonal Communication Interventions Previous Rementioning

confidence: 99%

Section: Ated) Interpersonal Communication Interventions Previous Rementioning

confidence: 99%

Cancer patients' needs for support in expressing instrumental concerns and emotions

et al. 2019

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“…With respect to the experiences of patients with chronic haematological malignancies, much existing literature is limited by the inclusion of individuals with both indolent and acute subtypes, with no differentiation between the two with respect to findings. Such studies have focused on issues such as information satisfaction, decision-making, and quality of life, as well as physician communication styles; identifying considerable scope for improvement [8][9][10][11][12][13][14]. Several studies have, however, specifically examined patients with chronic blood cancer subtypes in the last decade or so, with a recent survey identifying poorer diagnostic understanding compared to other malignancies [15]; a worrying issue given the link between information satisfaction and improved quality of life in cancer generally [16].…”

Section: Introductionmentioning

confidence: 99%

Incurable but treatable: Understanding, uncertainty and impact in chronic blood cancers—A qualitative study from the UK’s Haematological Malignancy Research Network

et al. 2022

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Objective Most blood cancers are incurable and typically follow unpredictable remitting-relapsing pathways associated with varying need for treatment, which may be distressing for patients. Our objective was to conduct a qualitative study to explore understanding among patients with such malignancies, including the explanations given by HCPs and the impact of uncertain trajectories, to generate evidence that could guide improvements in clinical practice. Methods The study is set within a population-based patient cohort (the Haematological Malignancy Research Network), in which care is delivered across 14 hospitals according to national guidelines. In-depth interviews were conducted with 35 patients with chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma or myeloma; and 10 accompanying relatives. Purposive sampling ensured selection of information-rich participants and the data were interrogated using reflective thematic analysis. Results Rich data were collected and four themes (11 sub-themes) were identified: 1) Knowledge and understanding of chronic haematological malignancies; 2) Incurable but treatable; 3) Uncertainty about the future; and 4) Treatable (but still incurable): Impact on patients. Patients had rarely heard of blood cancer and many expressed difficulty understanding how an incurable malignancy that could not be removed, was treatable, often for long periods. While some were reassured that their cancer did not pose an immediate survival threat, others were particularly traumatised by the uncertain future it entailed, suffering ongoing emotional distress as a result, which could be more burdensome than any physical symptoms. Nonetheless, most interviewees understood that uncertain pathways were caused by the unpredictability of their disease trajectory, and not information being withheld. Conclusions Many participants lacked knowledge about chronic haematological malignancies. HCPs acted to reassure patients about their diagnosis, and while this was appropriate and effective for some, it was less so for others, as the cancer-impact involved struggling to cope with ongoing uncertainty, distress and a shortened life-span.

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“…Clinician assessment of individual health literacy (capacity to access, process and interpret information) is therefore an essential component of SDM, as is noted by others. 15 Providing patients with information that is comprehensible, tailored to their needs and which does not overwhelm, 54 can be challenging. Strategies for ‘drip-feeding’ 54 information, are to be preferred to a one-way-flow of information from clinician to patient (‘broadcasting’), which is regarded as suboptimal.…”

Section: Discussionmentioning

confidence: 99%

Treatment decision making (TDM): a qualitative study exploring the perspectives of patients with chronic haematological cancers

et al. 2022

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ObjectivesHaematological malignancies are the fifth most common cancer in the UK, with chronic subtypes comprising around a third of all new diagnoses. These complex diseases have some similarities with other cancers, but often require different management. Surgical resection is not possible, and while some are curable with intensive chemotherapy, most indolent subtypes are managed with non-aggressive intermittent or continuous treatment, often over many years. Little is known about the views of patients with chronic haematological cancers regarding treatment decision making (TDM), a deficit our study aimed to address.Setting and designSet within the Haematological Malignancy Research Network (HMRN: www.hmrn.org), an ongoing population-based cohort that provides infrastructure to support evidence-based research, HMRN data were augmented by qualitative information from in-depth interviews. Data were analysed for thematic content, combining inductive and deductive approaches. Interpretation involved seeking meaning, salience and connections within data.ParticipantsThirty-five patients with four chronic subtypes: chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma, and myeloma. Ten relatives were present and contributed to varying extents.ResultsFive themes were discerned: (1) Preference for clinician recommendations; (2) Factors implicated in patient involvement in TDM; (3) Perceptions of proactive/non-proactive approaches to TDM; (4) Experiences of TDM at various points in the disease trajectory; (5) Support from others. Our principal finding relates to a strong preference among interviewees for treatment recommendations from haematologists, based on trust in their expertise and perceptions of empathetic patient–clinician relationships.ConclusionInterviewees wanted to be involved in TDM to varying extents, contingent on complex, inter-related factors, that are dynamic and subject to change according to differing clinical and personal contexts. Patients may benefit from clinicians assessing their shifting preferences for involvement on multiple occasions. Strong preferences for acceptance of recommendations was associated with cancer complexity, trust in clinician expertise and positive perceptions of patient–clinician relationships.

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Perspectives of patients with haematological cancer on how clinicians meet their information needs: “Managing” information versus “giving” it

Cited by 11 publications

References 35 publications

Cancer patients' needs for support in expressing instrumental concerns and emotions

Cancer patients' needs for support in expressing instrumental concerns and emotions

Incurable but treatable: Understanding, uncertainty and impact in chronic blood cancers—A qualitative study from the UK’s Haematological Malignancy Research Network

Treatment decision making (TDM): a qualitative study exploring the perspectives of patients with chronic haematological cancers

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