Distress in the care of people with chronic low back pain: insights from an ethnographic study.

Introduction: Distress is part of the experiences and care for people with chronic low back pain. However, distress is often pathologised and individualised; it is seen as a problem within the individual in pain and something to be downplayed, avoided, or fixed. To that end, we situate distress as a normal everyday relational experience circulating, affecting, moving in, through, and across bodies. Challenging practices that may amplify distress, we draw on the theorisation of affect as a relational assemblage to analyse physiotherapy clinical encounters in the care of people with chronic low back pain. Methods: Adopting a critical reflexive ethnographic approach, we analyse data from a qualitative project involving 15 ethnographic observations of patient-physiotherapist interactions and 6 collaborative dialogues between researchers and physiotherapists. We foreground conceptualisations of distress- and what they make (im)possible-to trace embodied assemblage formations and relationality when caring for people with chronic low back pain. Results: Our findings indicate that conceptualisation matters to the clinical entanglement, particularly how distress is recognised and navigated. Our study highlights how distress is both a lived experience and an affective relation-that both the physiotherapist and people with chronic low back pain experience distress and can be affected by and affect each other within clinical encounters. Discussion: Situated at the intersection of health sociology, sociology of emotions, and physiotherapy, our study offers a worked example of applying an affective assemblage theoretical framework to understanding emotionally imbued clinical interactions. Viewing physiotherapy care through an affective assemblage lens allows for recognising that life, pain, and distress are emerging, always in flux. Such an approach recognises that clinicians and patients experience distress; they are affected by and affect each other. It demands a more humanistic approach to care and helps move towards reconnecting the inseparable in clinical practice-emotion and reason, body and mind, carer and cared for.

Partnering with consumers to co-design a person-centred coding framework for qualitative patient experience data.

BACKGROUND: Patient Reported Experience Measures (PREMs) provide health organisations insight into how 'person-centric' care is. Qualitative data in PREMs surveys provide essential context about experience but are challenging to analyse at an organisational level. OBJECTIVE: To co-design a person-centred coding framework to assist in the analysis of qualitative PREMs data. PATIENT INVOLVEMENT: Consumer representatives were involved in problem identification, co-design, coding of raw data (testing), evaluation and manuscript authorship. METHODOLOGY: Co-design principles guided production of a deductive coding framework with Picker Principles of Person-Centred Care as a conceptual framework. The framework was co-designed over 4 stages, with cross-professional stakeholders (including two consumer representatives): 1) assessment of current state and understanding priorities; 2) adapting Picker Principles of Person-Centred Care as a coding framework; 3) testing and evaluation of a coding template over two quality improvement (QI) cycles against measures of inter-coder reliability and perceived usefulness; 4) endorsement and planning for implementation. RESULTS: The Picker Principles were a suitable coding framework for inpatient PREMs data, and a coding template in an electronic spreadsheet met end-user needs. Results of the first QI cycle indicated a need for 'less academic' domain names and definitions, which were reviewed and updated to a first-person perspective in partnership with a consumer representative. Inter-coder reliability measures and qualitative feedback improved after cycle two testing and evaluation. DISCUSSION: This single site study produced a feasible solution to apply person-centred principles to analyse PREMs data and requires testing in different settings. Cross-disciplinary partnerships enabled the development of a reliable and acceptable deductive coding framework that was usable for people without prior experience in qualitative data analysis. PRACTICAL VALUE: Our solution offers an example for health services to harness the value of qualitative PREMs data and partner with consumers to take person-centric action to improve the safety, equity, and experience of healthcare.

Bringing researchers to the consumer table: The process and outcomes of a consumer roundtable on telehealth.

INTRODUCTION: Despite the significant expansion and rapid uptake of telehealth services as a COVID-19 response, the pandemic restricted opportunities to involve health consumers in telehealth research. Authentic consumer and community involvement in research begins with engagement in priority-setting. We report here on the process and outcomes of a consumer-led event intended to support involvement of consumers, from early in the research process. METHODS: In 2022, The University of Queensland's Consumer and Community Network hosted a Consumer Roundtable to 'bring researchers to the consumer table' and explore emerging issues and priorities for future research. The event used World Café Method, with three 20-min rounds of small group discussion centred on questions about telehealth experiences, followed by a facilitated harvest discussion about future research directions. Participants' notes from small group discussions were subjected to conventional inductive content analysis, and a visual record was created in real-time by a graphic artist. RESULTS: Twenty-eight consumers and 22 researchers took part. Content analysis identified three main foci from discussions: person-centred care, better access to better care, the (unrealised) potential of telehealth. Research questions prioritised by consumer vote focussed on marginalised groups and stigmatised conditions; differences between telehealth and face-to-face healthcare delivery; and the experience of conveying and receiving compassion via telehealth. DISCUSSION: The Consumer Roundtable created early engagement between health consumer representatives and telehealth researchers, which has yielded ongoing partnerships. World Café method proved particularly useful for seeding relationships between researchers and consumers. However, there was limited opportunity to generate consensus about research priorities.

Co-designing nutrition interventions with consumers: A scoping review.

BACKGROUND: There is little known about nutrition intervention research involving consumer co-design. The aim of this scoping review was to identify and synthesise the existing evidence on the current use and extent of consumer co-design in nutrition interventions. METHODS: This scoping review is in line with the methodological framework developed by Arksey and O'Malley and refined by the Joanna Briggs Institute using an adapted 2weekSR approach. We searched Medline, EMBASE, PsycInfo, CINAHL and Cochrane. Only studies that included consumers in the co-design and met the 'Collaborate' or 'Empower' levels of the International Association of Public Participation's Public Participation Spectrum were included. Studies were synthesised according to two main concepts: (1) co-design for (2) nutrition interventions. RESULTS: The initial search yielded 8157 articles, of which 19 studies were included (comprising 29 articles). The studies represented a range of intervention types and participants from seven countries. Sixteen studies were published in the past 5 years. Co-design was most often used for intervention development, and only two studies reported a partnership with consumers across all stages of research. Overall, consumer involvement was not well documented. No preferred co-design framework or approach was reported across the various studies. CONCLUSIONS: Consumer co-design for nutrition interventions has become more frequent in recent years, but genuine partnerships with consumers across all stages of nutrition intervention research remain uncommon. There is an opportunity to improve the reporting of consumer involvement in co-design and enable equal partnerships with consumers in nutrition research.

Pallister-Killian syndrome: Multiband FISH of tetrasomy 12p.

Two patients with mosaicism for tetrasomy 12p are described. One was diagnosed at the age of 14 years with severe mental retardation and other dysmorphologic findings and abnormal skin pigmentation. Chromosome analysis of a blood sample showed a normal female karyotype. A skin biopsy specimen showed mosaicism for a marker chromosome. The other patient was diagnosed prenatally, from a chorionic villus sample, but only in the direct preparation. Mosaicism for a marker chromosome was demonstrated. The ultrasound examination revealed no abnormalities. Multicolor and multiband fluorescence in situ hybridization analyses showed that the marker chromosome was derived from chromosome 12p, which confirmed the diagnosis of Pallister-Killian syndrome in both patients. To our knowledge, this is the first report of the use of these fluorescence in situ hybridization techniques in Pallister-Killian syndrome whereby the nature of the marker chromosome could be confirmed to be derived from chromosome 12p.