‘Opportunity to bond and a sense of normality’:Parent and staff views of cuddling babies undergoing therapeutic hypothermia in neonatal intensive care: ‘CoolCuddle’

Abstract Background Currently, parents whose sick babies are undergoing three days of cooling therapy for hypoxic–ischaemic encephalopathy in neonatal intensive care units (NICUs) are not permitted to cuddle their cooled babies, due to concerns of warming the baby or dislodging breathing tubes or vascular catheters. Parents want to stay and care for their cooled babies and have reported that bonding is adversely affected when they are not permitted to hold them. Design and Participants Qualitative interviews with 21 parents of cooled babies in NICU (11 mothers and 10 fathers) and 10 neonatal staff (4 consultants and 6 nurses) explored their views and experiences of an intervention to enable parents to cuddle their cooled babies (CoolCuddle). Thematic analysis methods were used to develop the themes and compare them between parents and staff. Results Five themes were produced. Three themes were comparable between parents and staff: Closeness, a sense of normality and reassurance and support. An additional parent theme reflected their mixed feelings about initial participation as they were apprehensive, but felt that it was an amazing opportunity. Parents and staff described the closeness between parents and babies as important for bonding and breastfeeding. Fathers particularly appreciated the opportunity to hold and bond with their infants. Parents valued the reassurance and support received from staff, and the cuddles helped them feel more normal and more like a family at a very stressful time. In a final staff theme, they discussed the skills, number of staff and training needed to undertake CoolCuddle in NICU. Conclusions Parents cuddling their babies during cooling therapy enhanced parent–infant bonding and family‐centred care in NICU and was positively received. Adverse perinatal mental health, impaired mother–infant bonding and their effects on the establishment of breastfeeding may be ameliorated by introducing CoolCuddle. Patient Contribution Our parent advisors contributed to the interview topic guides and endorsed the themes from the analysis

Psychological wellbeing and quality-of-life among siblings of paediatric CFS/ME patients:a mixed-methods study

Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is a disabling condition known to have a negative impact on all aspects of a child’s life. However, little is understood about the impact of CFS/ME on siblings. A total of 34 siblings completed questionnaires measuring depression (Hospital Anxiety and Depression Scale (HADS)), anxiety (HADS and Spence Children’s Anxiety Scale (SCAS)) and European Quality-of-life-Youth (EQ-5D-Y). These scores were compared with scores from normative samples. Siblings had higher levels of anxiety on the SCAS than adolescents of the same age recruited from a normative sample; however, depression and quality-of-life were similar. Interviews were undertaken with nine siblings of children with CFS/ME who returned questionnaires. Interview data were analysed using a framework approach to thematic analysis. Siblings identified restrictions on family life, ‘not knowing’ and lack of communication as negative impacts on their family, and change of role/focus, emotional reactions and social stigma as negative impacts on themselves. They also described positive communication, social support and extra activities as protective factors. Paediatric services should be aware of the impact of CFS/ME on the siblings of children with CFS/ME, understand the importance of assessing paediatric CFS/ME patients within the context of their family and consider providing information for siblings about CFS/ME

Adult patients’ experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME):a qualitative study in England

Abstract Background Few studies have explored patients’ experiences of treatment for CFS/ME. This study aims to fill this gap by capturing the perspective of patients who have been treated by NHS specialist CFS/ME services in England. Methods Semi-structured interviews were conducted during the period June–September 2014 with 16 adults who were completing treatment at one of three outpatient NHS specialist CFS/ME services. Interviews were analysed thematically using constant comparison techniques, with particular attention paid to contrasting views. Results Three themes were identified: ‘Journey to specialist services’; ‘Things that help or hinder treatment’; and ‘Support systems’. Within these themes nine sub-themes were identified. A wide range of factors was evident in forming participants’ experiences, including personal characteristics such as perseverance and optimism, and service factors such as flexibility and positive, supportive relationships with clinicians. Participants described how specialist services played a unique role, which was related to the contested nature of the condition. Many participants had experienced a lack of validation and medical and social support before attending a specialist service. Patients’ experiences of life before referral, and the concerns that they expressed about being discharged, highlighted the hardship and obstacles which people living with CFS/ME continue to experience in our society. Conclusions The experiences of CFS/ME patients in our study showed that NHS specialist CFS/ME services played a vital role in patients’ journeys towards an improved quality of life. This improvement came about through a process which included validation of patients’ experiences, acceptance of change, practical advice and support, and therapeutic outcomes

What matters to children with CFS/ME?:A conceptual model as the first stage in developing a PROM

Background: Paediatric chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) is relatively common and disabling. Research is hampered because current patient-reported outcome measures (PROMs) do not capture outcomes that are important to children with CFS/ME. Aim: The aim of this study was to explore the aspects of life and health outcomes that matter to children with CFS/ME. Methods: Twenty-five children with CFS/ME were interviewed (11 males, 14 females; mean age 12.9 years (SD 2.2), range 8–17). Twelve were trial participants interviewed during the trial and 13 were recruited as part of a follow-up qualitative study. Parents were present in 19 interviews with their children. Three mothers participated in a focus group. All the interviews and the focus group were audio-recorded and transcribed. Data were analysed thematically using techniques of constant comparison. NVivo was used to structure and categorise data in a systematic way. Results: Children identified four key themes (health outcome domains): ‘symptoms’ that fluctuated, which caused an unpredictable reduction in both ‘physical activity’ and ‘social participation’ all of which impacted on ‘emotional well-being’. These domains were influenced by both ‘management’ and ‘contextual factors’, which could be positive and negative. The relationship between healthcare and school was considered pivotal. Conclusions: Children's descriptions helped to inform a conceptual model that is necessary to develop a new paediatric CFS/ME PROM. Doctors need to be aware of how children conceptualise CFS/ME; the relationship between healthcare and school is fundamental to ameliorate the impact of CFS/ME. Trial registration number: ISRCTN81456207

Patients' and health professionals' perceptions of the LoDED (limit of detection and ECG discharge) strategy for low-risk chest pain management: A qualitative study

Background: Rapid discharge strategies for patients with low-risk chest pain using high-sensitivity troponin assays have been extensively evaluated. The adherence to, and acceptability of such strategies, has largely been explored using quantitative data. The aims of this integrated qualitative study were to explore the acceptability of the limit of detection and ECG discharge strategy (LoDED) to patients and health professionals, and to refine a discharge information leaflet for patients with low-risk chest pain.Methods: Patients with low-risk chest pain who consented to a semi-structured interview were purposively sampled for maximum variation from four of the participating National Health Service sites between October 2018 and May 2019. Two focus groups with ED health professionals at two of the participating sites were completed in April and June 2019.Results: A discharge strategy based on a single undetectable hs-cTn test (LoDED) was acceptable to patients. They trusted the health professionals who were treating them and felt reassured by other tests, (ECG) alongside blood test(s), even when the clinical assessment did not provide a firm diagnosis. In contrast, health professionals had reservations about the LoDED strategy, including concern about identifying low-risk patients and a shortened patient observation period. Findings from 11 patient interviews and 2 staff focus groups (with 20 clinicians) centred around three overarching themes: acceptability of the LoDED strategy, perceptions of symptom severity and uncertainty, and patient discharge information.Conclusion: Rapid discharge for low-risk chest pain is acceptable to patients, but clinicians reported some reticence in implementing the LoDED strategy. Further work is required to optimise discharge discussions and information provision for patients

Managed Activity Graded Exercise iN Teenagers and pre-Adolescents (MAGENTA) feasibility randomised controlled trial:study protocol

INTRODUCTION: Paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is a relatively common and disabling condition, yet there is a limited evidence base for treatment. There is good evidence that graded exercise therapy is moderately effective in adults with CFS/ME, but there is little evidence for the effectiveness, cost-effectiveness, acceptability or best method of delivery for paediatric CFS/ME. This study aims to investigate the acceptability and feasibility of carrying out a multicentre randomised controlled trial investigating the effectiveness of graded exercise therapy compared with activity management for children/teenagers who are mildly or moderately affected with CFS/ME. METHODS AND ANALYSIS: 100 paediatric patients (8–17 years) with CFS/ME will be recruited from 3 specialist UK National Health Service (NHS) CFS/ME services (Bath, Cambridge and Newcastle). Patients will be randomised (1:1) to receive either graded exercise therapy or activity management. Feasibility analysis will include the number of young people eligible, approached and consented to the trial; attrition rate and treatment adherence; questionnaire and accelerometer completion rates. Integrated qualitative methods will ascertain perceptions of feasibility and acceptability of recruitment, randomisation and the interventions. All adverse events will be monitored to assess the safety of the trial. ETHICS AND DISSEMINATION: The trial has received ethical approval from the National Research Ethics Service (South West—Frenchay 15/SW/0124). TRIAL REGISTRATION NUMBER: ISRCTN23962803; Pre-results