Use of serial qualitative interviews to understand patients' evolving experiences and needs

Hamano, Jun; Kendall, Marilyn; Carduff, Emma; Worth, Alison; Harris, Fiona; Lloyd, Anna; Cavers, Debbie; Grant, Liz; Sheikh, Aziz

doi:10.1136/bmj.b3702

Cited by 253 publications

(286 citation statements)

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“…The longitudinal approach permitted the researcher to follow participants as they deteriorated, so those in the last months of life were represented. The design enabled prospective, retrospective and real‐time accounts of experience, where participants moved beyond public accounts of illness to reveal their private thoughts and fears (Cornwell, 1984; Murray et al., 2009). Therefore, the study was not based solely on retrospective accounts of experience.…”

Section: Discussionmentioning

confidence: 99%

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Living and dying with metastatic bowel cancer: Serial in-depth interviews with patients

2017

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Colorectal cancer is the second highest cause of cancer deaths. There are significant physical and psycho‐social effects on quality of life with advanced disease. Despite this, there are few accounts of the patient experience from advanced illness through to dying. We elicited the longitudinal experiences of living and dying with incurable metastatic colorectal cancer by conducting serial interviews with patients for 12 months or until they died. The interviews were analysed, using a narrative approach, longitudinally as case studies and then together. Thirty‐six interviews with 16 patients were conducted. Patients experience metastatic colorectal cancer in three phases; (1) Diagnosis and initial treatment; (2) Deterioration and social isolation and (3) Death and dying. Many patients initially said they hoped to survive, but, as “private” and in‐depth accounts of the experience emerged in further interviews, so did the understanding that this hope co‐existed with the knowledge that death was near. Palliative chemotherapy and the challenge of accessing private accounts of patient experience can inhibit care planning and prevent patients benefitting from an active holistic palliative care approach earlier in the disease trajectory. This study has immediate clinical relevance for health care professionals in oncology, palliative care and primary care.

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Section: Discussionmentioning

confidence: 99%

“…We used serial in‐depth interviews to understand how patient experiences and needs changed as illness progressed (Kendall et al., 2015; Murray et al., 2009). Participants were interviewed over a year; each participating in up to three interviews.…”

Section: Methodsmentioning

confidence: 99%

Living and dying with metastatic bowel cancer: Serial in-depth interviews with patients

2017

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“…However, conducting repeated data collection in different care and home contexts over 18 months was of great value to achieve the breadth of the experience of being a participant in one’s own care (Polit & Beck, 2006). According to Murray et al (2009), there is a risk in longitudinal qualitative research to generate a large volume of data and thus, making the analysis process unmanageable. Hence, the initial number of 15 patients was considered sufficient to maintain the overview and depth of the data analysis.…”

Section: Discussionmentioning

confidence: 99%

“…The design was longitudinal, and ethnographically-inspired fieldwork was used to explore the COPD illness and treatment trajectory during and after hospitalization for a severe AECOPD (Hounsgaard, Petersen, & Pedersen, 2007; Murray et al, 2009; Saldaña, 2003; Spradley, 1980). The study was conducted in a department of respiratory medicine at a regional acute hospital in rural Denmark and in the participants’ own homes.…”

Section: Methodsmentioning

confidence: 99%

“…Interviews took place in the participants’ own homes, except for two held at the hospital. In conducting serial interviews, the researcher built up a relationship with the participants and focused on changes over time (Murray et al, 2009). The interviews followed a semi-structured interview guide containing questions about how participation in one’s own care arose and developed through the study period.…”

Section: Methodsmentioning

confidence: 99%

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The experience of being a participant in one’s own care at discharge and at home, following a severe acute exacerbation in chronic obstructive pulmonary disease: a longitudinal study

Andersen

Thomsen

Poul

et al. 2017

International Journal of Qualitative Studies on Health and Well

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Purpose: In healthcare related to hospital discharge and follow-up, it is acknowledged that patient participation can strengthen self-management in patients with chronic obstructive pulmonary disease. However, the meaning of participation in care following a severe acute exacerbation is less described. Therefore, the aim of this part of a larger study was to explore patients’ experiences of participating in their care around discharge and in their subsequent day-to-day care at home. Method: The study was designed as a qualitative, longitudinal study. Data were collected by repeated participant observations and in-depth interviews with 15 patients within a period of 18 months post-discharge. A phenomenological-hermeneutic approach was used to interpret the data. Results: Before discharge, the patients struggled to regain a sense of control in their efforts to build up strength, and acquire sufficient clarity and confidence to face self-management at home. At home, the patients strived to comply with advice and encouragement in a struggle to stay motivated and confident, and to ask for help. Conclusions: With more knowledge about patients’ participation in care, healthcare professionals can encounter patients in ways that are sensitive to their specific care and support needs and, thereby, contribute to the promotion of patients’ health and well‐being.

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Being as Normal as Possible: How Young People Ages 16–25 Years Evaluate the Risks and Benefits of Treatment for Inflammatory Arthritis

Hart

McDonagh

Thompson

et al. 2016

Arthritis Care & Research

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ObjectiveTo explore how young people (ages 16–25 years) with inflammatory arthritis evaluate the risks and benefits of treatment, particularly treatment with biologic therapies.MethodsThis qualitative study involved in‐depth interviews (n = 44) with young people, trusted others (e.g., parents), and health professionals; audio‐recordings (n = 4) of biologic therapy–related consultations; and focus groups (n = 4). Analysis used techniques from grounded theory (open and focused coding, constant comparison, memoing, and mapping).ResultsYoung people aspired to live what they perceived as a “normal” life. They saw treatment as presenting both an opportunity for and a threat to achieving this. Treatment changes were therefore subject to complex and ongoing evaluation, covering administration, associated restrictions, anticipated effects, and side effects. Information sources included expert opinion (of professionals and other patients) and personal experience. Previous treatments provided important reference points. Faced with uncertain outcomes, young people made provisional decisions. Both trusted others and health professionals expressed concern that young people were too focused on short‐term outcomes.ConclusionYoung people value treatment that helps them to live a “normal” life. There is more to this than controlling disease. The emotional, social, and vocational consequences of treatment can be profound and lasting: opportunities to discuss the effects of treatment should be provided early and regularly. While making every effort to ensure understanding of the long‐term clinical consequences of taking or not taking medication, the wider impact of treatment should not be dismissed. Only through understanding young people's values, preferences, and concerns can a sustainable balance between disease control and treatment burden be achieved.

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Use of serial qualitative interviews to understand patients' evolving experiences and needs

Cited by 253 publications

References 28 publications

Living and dying with metastatic bowel cancer: Serial in-depth interviews with patients

Living and dying with metastatic bowel cancer: Serial in-depth interviews with patients

The experience of being a participant in one’s own care at discharge and at home, following a severe acute exacerbation in chronic obstructive pulmonary disease: a longitudinal study

Being as Normal as Possible: How Young People Ages 16–25 Years Evaluate the Risks and Benefits of Treatment for Inflammatory Arthritis

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