'What are you hiding from me?' A qualitative study exploring health consumer attitudes and experiences regarding the patient-led recording of a hospital clinical encounter.

OBJECTIVE: Health consumers (patients, their family, friends and carers) are frequently using their smartphones to record hospital clinical encounters. However, there is limited research which has explored the social interaction surrounding this behaviour. Understanding the consumer perspective is key to informing policy and practice. This study explored consumer attitudes and experiences regarding patient-led recordings. METHODS: Semistructured interviews were undertaken with 20 hospital consumers. Participants were recruited via advertising, posters and invitation letters. Interviews were digitally recorded and transcribed. Data were analysed using thematic analysis. FINDINGS: Four main themes were identified relating to participant perspectives of patient-led recordings: (1) consumers viewed clinician consent as important, although they reported different experiences of the consent process, (2) consumers indicated that a clinician refusing the recording had the potential to undermine the consumer-clinician relationship, (3) consumers were both uninformed and misinformed regarding relevant policy and legislation and (4) consumers expressed a number of expectations regarding their rights to record and of the health service in supporting this practice. CONCLUSION: Consumers want to record their clinical encounters with the consent of their clinician but are unprepared to navigate consent discussions. Health services and clinicians should inform consumers who want to record about their rights and responsibilities, to support the consent process and safe recording environments. Clinician refusal to consent to a patient-led recording may not lead to increased covert recording; however, clear communication about the reasons for refusing a recording is needed to protect the consumer-clinician relationship. PATIENT OR PUBLIC CONTRIBUTION: A health consumer was part of the research team and was involved in all stages of this study, including the design, data analysis and reviewing of the manuscript.

Beyond Recording the Clinical Discussion: A Qualitative Study into Patient-Led Recordings in Hospital.

Patient-led recording occurs when a patient records a clinical encounter with their smart device. Understanding patient-led recording is important in ensuring a safe and patient-centered response to this behavior. This exploratory study provides insight into the patient perspective of patient-led recordings. We conducted 20 semistructured interviews with hospital and health service patients. The interview data was analyzed using thematic analysis. We identified three themes relating to patient-led recordings, including patient engagement, psychosocial, and health service. Findings suggest that health services move beyond querying the permissibility of recording and consider how to maximize the benefits of recording while reducing the risk of harm. Patients and clinicians need to be made aware of the potential broader psychosocial benefits of recording a clinical encounter during hospital admission. These results point to an urgent need for health services to develop policies and resources that support clinicians to work within a culture of recording.

Conducting a paediatric multi-centre RCT with an industry partner: challenges and lessons learned.

There are many benefits of multi-centred research including large sample sizes, statistical power, timely recruitment and generalisability of results. However, there are numerous considerations when planning and implementing a multi-centred study. This article reviews the challenges and successes of planning and implementing a multi-centred prospective randomised control trial involving an industry partner. The research investigated the impact on psychosocial functioning of a cosmetic camouflage product for children and adolescents with burn scarring. Multi-centred studies commonly have many stakeholders. Within this study, six Australian and New Zealand paediatric burn units as well as an industry partner were involved. The inclusion of an industry partner added complexities as they brought different priorities and expectations to the research. Further, multifaceted ethical and institutional approval processes needed to be negotiated. The challenges, successes, lessons learned and recommendations from this study regarding Australian and New Zealand ethics and research governance approval processes, collaboration with industry partners and the management of differing expectations will be outlined. Recommendations for future multi-centred research with industry partners include provision of regular written reports for the industry partner; continual monitoring and prompt resolution of concerns; basic research practices education for industry partners; minimisation of industry partner contact with participants; clear roles and responsibilities of all stakeholders and utilisation of single ethical review if available.

Smartphone standoff: a qualitative study exploring clinician responses when a patient uses a smartphone to record a hospital clinical encounter.

OBJECTIVES: Patients are initiating recordings of their clinical encounters using a smartphone. While this is an important, universal issue, little is known about the clinician viewpoint. Understanding clinician perspectives and behaviours is key to ensuring the protection of patient and clinician interests. This study aimed to gain a deep understanding of clinician attitudes and behaviours to patient-led recordings of hospital clinical encounters. DESIGN: Semistructured interviews were conducted with 20 hospital clinicians. Participants were recruited using a combination of purposive and snowball sampling. Interviews were digitally recorded and transcribed. Transcripts were analysed using thematic analysis. SETTING: This study took place at two hospitals in the metropolitan area of Gold Coast, Australia. PARTICIPANTS: Participants included clinicians with varying levels of experience, or clinical managers in the roles of: medical, nursing and midwifery, and allied health staff. RESULTS: The 20 participants interviewed were from a range of health disciplines and clinical areas and most had experienced a patient-led recording. Three themes emerged when exploring participant attitudes. First, that recording was a significant and controversial topic. Second, that experiences often informed clinician attitudes and many clinicians held conflicting views. Finally, a perceived loss of control was a significant stressor. A further three themes emerged relating to clinician behaviours when a patient asks to record. Decision-making involved balancing multiple factors often in pressurised situations. Shared decision-making was shaped by power dynamics and, finally, decision-making was not informed by hospital policy. CONCLUSIONS: While patient-led recordings were viewed as beneficial, clinician welfare and patient safety may be at risk when a patient records a clinical encounter. Current safeguards, such as hospital policies, are not used and may not meet the needs of clinicians when decision-making is complicated by power dynamics. More research is needed to better understand how clinicians can be supported in this critical domain.

Defining covert recording: A qualitative study exploring the experiences of clinicians when a patient records a hospital clinical encounter using a smartphone without consent.

Background: Patients use their smartphones to covertly record their clinical encounters in hospital. However, this issue is poorly understood. Insight into the clinician perspective will help inform policies and practices that deliver safe environments for patients and clinicians. Objective: This study aimed to gain a deep understanding of clinician attitudes and behaviours when a patient covertly records a hospital clinical encounter using a smartphone. Methods: Semi-structured interviews were undertaken with 20 hospital clinicians. Participants were recruited via purposive and snowball sampling. Interviews were conducted in person or via Microsoft Teams. Interviews were digitally audio recorded and transcribed. Data was analysed using thematic analysis. Results: Most of the 20 participants reported they had either suspected or experienced a patient covertly recording a clinical encounter. Covert recordings occurred across a broad range of clinical disciplines and contexts. Themes were identified from participant perspectives, including discernment of patient intention, likeliness to consent to the recording if asked, anticipated risks and potential benefits associated with the covert recording. These themes have led to the categorisation of three forms of covert recording: (1) Intentional Covert Recording (2) Inadvertently - Covert Recording, and (3) Beneficial Covert Recording. Conclusion: Clinicians have varied experiences and responses when a patient covertly records a clinical encounter. Findings indicate that nuanced strategies may be required to support clinicians to manage covert recording, whilst balancing the needs of patients.

Australian health professionals' perspectives of psychosocial adjustment to visible differences: A qualitative analysis of pediatric populations.

Living with a visible difference (e.g., disfigurement) can compromise a child's psychological wellbeing. Although some children can adjust well, others can develop a range of appearance-related issues such as social anxiety, low self-esteem, and body dissatisfaction. However, current research fails to confirm what factors contribute to appearance-related distress, and what factors buffer the consequences of living with a visible difference. Semi-structured qualitative interviews were conducted with 16 Australian specialist health professionals who care for children with visible differences. Interviews explored the type of appearance-related psychosocial concerns presented to a pediatric hospital, perspectives on the impact of appearance-related distress, as well as factors and processes that health professionals perceive influence adjustment. Data were subjected to inductive thematic analysis. Rich evidence was offered by health professionals, which demonstrated deep understanding of the psychological wellbeing of their patients. Three themes were identified: Mind, Body, and Soul; Stages of Life; and Individual Differences. Findings highlighted the complexity of appearance-related distress, with individual differences in adjustment, and the powerful impact it can have on a child's short and long-term psychosocial wellbeing. The importance of reaching consensus in the conceptualisation and measurement of psychological wellbeing is stressed, and key domains associated with adjustment are proposed.

Opening a Pandora's Box that can't be salvaged: Health professionals' perceptions of appearance-related care in an Australian pediatric specialist hospital.

Many children and young people struggle adjusting to the psychosocial consequences (e.g., body dissatisfaction, social anxiety, and stigmatisation) of visible differences (or disfigurement). As appearance-affecting conditions often require specialist multidisciplinary team care, health professionals are in a unique position to offer psychosocial support and intervention. However, there is a dearth of literature on how appearance-related concerns are managed in pediatric hospital settings. Sixteen Australian specialist health professionals participated in semi-structured qualitative interviews to address this gap. Interviews explored current appearance-related psychosocial service provision, barriers in accessing appearance-related care, and perceptions of online platforms to deliver specialist support and intervention. Thematic analysis demonstrated four themes: We can do it better, Capability versus availability, Online generation, and Putting appearance on the agenda. This research highlighted the potential value of online platforms to increase accessibility to specialist appearance-related care, the need for more psychosocial resources to be integrated into appearance-related specialities, prioritising the development of low to medium appearance-related support and intervention, increasing the appearance-related knowledge of health professionals and families, and the need for more holistic approaches in routine care.

Psychological and psychosocial functioning of children with burn scarring using cosmetic camouflage: a multi-centre prospective randomised controlled trial.

BACKGROUND: Burns leave patients with long-term physical scarring. Children with scarring are required to face challenges of reintegration into their community, including acceptance of an altered appearance and acceptance by others. This can be difficult given society's preoccupation with physical appearance. Limited research exists investigating validity of cosmetic camouflage as a psychosocial intervention for children with scarring. This study investigated whether using cosmetic camouflage (Microskin™) had a positive impact on health-related quality of life, self-concept and psychopathology for children and adolescents (8-17 years) with burn scarring. METHOD: A prospective multi-centre randomised controlled trial was conducted across Australian and New Zealand paediatric hospitals. 63 participants (49 females, mean age 12.7 ± 2.1 years) were enrolled. Data points were baseline (Time 1) and at 8 weeks (Time 2) using reliable and valid psychometric measures. RESULTS: Findings indicate there were significant improvements in socialisation, school and appearance scales on the Paediatric Quality of Life Inventory and psychopathology scores particularly peer problems decreased. However self-concept remained stable from baseline throughout intervention use. CONCLUSION: Cosmetic camouflage appears to have a positive impact on quality of life particularly socialisation. Cosmetic camouflage is a valid tool to assist children with scarring to actively participate socially within their communities.

Psychosocial functioning differences in pediatric burn survivors compared with healthy norms.

Burn injury is one of the most traumatic injuries a child or adolescent can experience. When a burn injury occurs, the child can suffer pain, uncertainty, fear, and trauma from acute treatment to rehabilitation and reintegration. He or she can also experience long-term psychosocial and psychological difficulties. The objective of the study was to compare health-related quality of life (HRQoL), psychopathology, and self-concept of children who have suffered a burn injury with a matched sample of healthy controls. Sixty-six children and adolescents with a burn injury, who were aged between 8 to 17 years, and a caregiver were recruited from six burn centers in Australia and New Zealand. Participants completed the Paediatric Quality of Life Inventory, the Strengths and Difficulties Questionnaire, and the Piers-Harris Self-Concept Scale (P-H SCS). Scores were compared with published normative data. As scarring and appearance are a distinct issue, the Paediatric Quality of Life Inventory cancer module perceived physical appearance subscale was also included. Pediatric burn survivors and their caregivers reported significantly higher emotional and behavioral problems and lower HRQoL, but no significant differences in self-concept compared with healthy counterparts. Pediatric burn survivors also reported significantly poorer perceived physical appearance than the matched pediatric cancer sample. Burned children reported lowered quality of life, particularly related to scarring and appearance; however, they reported normative self-concept. This may be because of self-concept being a psychological trait, whereas HRQoL is influenced by societal norms and expectations. Psychosocial support is necessary to build positive coping strategies and manage the unpleasant social experiences that may reduce quality of life.