‘Your face freezes and so does your life’: A qualitative exploration of adults’ psychosocial experiences of living with acquired facial palsy

Objectives: Facial palsy (FP) is a highly visible appearance-affecting condition and can have a significant impact on facial function. Qualitative research focussing on adults’ experiences of living with acquired FP is limited. This study aimed to explore the psychosocial impact of acquired FP and to gain a greater understanding of patients’ experiences of treatment and care in the United Kingdom. Design: A qualitative interview study with individuals living with acquired FP. Methods: Ten adults with acquired FP were recruited. Their experiences were explored using semi-structured telephone interviews. Data were analysed using thematic analysis. Results: Five master themes were identified through the thematic analysis: 1) grappling with a new identity, 2) the psychosocial impact of living with facial palsy, 3) isolation: dealing with ‘one hell of a problem on your own’, 4) a life on hold, 5) coping strategies. Findings indicated high levels of distress and significant challenges in managing the functional and psychosocial changes associated with acquiring FP. Participants expressed grief for their former appearance and identity, with photographs and mirrors acting as agonizing reminders. Many reported a sense of abandonment due to uncoordinated care and, as a result, engaged in an endless and often fruitless pursuit to gain control over FP by experimenting with their own treatment. Many reported the negative impact of their altered facial expressions on social interactions and a fear of being negatively evaluated. Conclusions: This study highlights a pressing need to review how FP is managed in the UK. To improve patient well-being, health care professionals could benefit from FP education, and patients from timely access to psychological support and clearer standards of care following diagnosis

A systematic review of the psychosocial adjustment of children and adolescents with facial palsy: The impact of Moebius syndrome

Introduction: Facial palsy is often associated with impaired facial function and altered appearance. However, the literature with regards to the psychological adjustment of children and adolescents with facial palsy has not been systematically reviewed to date. This paper aimed to review all published research with regards to psychosocial adjustment for children and adolescents with facial palsy. Methods: MEDLINE, CINAHL, Embase, PsychInfo and AMED databases were searched and data was extracted with regards to participant characteristics, study methodology, outcome measures used, psychosocial adjustment and study quality. Results: Five studies were eligible for inclusion, all of which investigated psychosocial adjustment in participants with Moebius syndrome, a form of congenital facial palsy. Many parents reported their children to have greater social difficulties than general population norms, with difficulties potentially increasing with age. Other areas of psychosocial adjustment, including behaviour, anxiety and depression, were found to be more comparable to the general population. Discussion: Children and adolescents with Moebius syndrome may experience social difficulties. However, they also demonstrate areas of resilience. Further research including individuals with facial palsy of other aetiologies is required in order to determine the psychosocial adjustment of children and adolescents with facial palsy

“It’s on your shoulders now” Transitioning from child-to-adult UK cleft lip/palate services: An exploration of young adults' narratives

Objectives Treatment for cleft lip and/or palate (CL/P) in the United Kingdom is administered on a standardised pathway from diagnosis to early adulthood, with options to be re-referred in later life. At age 16, patients become responsible for their treatment decisions. Evidence from the wider health literature indicates this transition can be challenging and that this population may require additional support. The present study explored young people's experiences of transition to adult care in the context of CL/P services, with the aim of identifying support needs and informing future service delivery. Design Individual semi-structured interviews were conducted with 15 individuals with CL/P (aged 17–25 years) to explore transition experiences. Interviews lasted an average of 69 min and data were analysed using reflexive thematic analysis. Results Four themes, with subthemes, were identified: 1) Readiness for Transition covered feelings of preparedness and how health professionals approached transition; 2) Making Decisions as an Adult described concerns and considerations when making treatment decisions; 3) Finding and Using Support, reflected the roles of caregivers and peers in developing self-advocacy; and 4) Reflections on Transition Care offered insight into how care could be improved. Conclusion Individuals born with CL/P may experience challenges in becoming responsible for their own care and treatment decisions. The findings of this study indicate that a dedicated transition protocol may be beneficial, such that adolescents are prepared to confidently access and manage their care into adulthood. Opportunities for improvements in transition planning and provision are discussed

A conceptual thematic framework of psychological adjustment in caregivers of children with craniofacial microsomia

Objective: Children with craniofacial microsomia (CFM) have complex healthcare needs, resulting in evaluations and interventions from infancy onward. Yet, little is understood about families’ treatment experiences or the impact of CFM on caregivers’ well-being. To address this gap, the NIH-funded ‘Craniofacial microsomia: Accelerating Research and Education (CARE)’ program sought to develop a conceptual thematic framework of caregiver adjustment to CFM. Design: Caregivers reported on their child's medical and surgical history. Narrative interviews were conducted with US caregivers (n = 62) of children aged 3-17 years with CFM. Transcripts were inductively coded and final themes and subthemes were identified. Results: Components of the framework included: 1) Diagnostic Experiences, including pregnancy and birth, initial emotional responses, communication about the diagnosis by healthcare providers, and information-seeking behaviors; 2) Child Health and Healthcare Experiences, including feeding, the child's physical health, burden of care, medical decision-making, surgical experiences, and the perceived quality of care; 3) Child Development, including cognition and behavior, educational provision, social experiences, and emotional well-being; and 4) Family Functioning, including parental well-being, relationships, coping strategies, and personal growth. Participants also identified a series of “high” and “low” points throughout their journey and shared their priorities for future research. Conclusions: Narrative interviews provided rich insight into caregivers’ experiences of having a child with CFM and enabled the development of a conceptual thematic framework to guide clinical care and future research. Information gathered from this study demonstrates the need to incorporate evidence-based psychological support for families into the CFM pathway from birth onward

The clinical applications of working memory training

Working memory is involved in a variety of cognitive tasks, with working memory capacity predicting an individual's ability to process information and focus attention on taskrelated information. Subsequently, recent research has investigated whether working memory capacity can be improved through training and whether improvements generalise to other cognitive, behavioural or emotional domains. This training is typically adaptive in nature, changing in difficulty according to participant ability, and can be completed in the participant’s home on a computer, giving it the potential to be an easily accessible intervention for a range of clinical populations. The first paper presents a systematic review evaluating the effectiveness of computerised working memory training for individuals with neurodevelopmental disorders, which are often associated with working memory difficulties. The review found that to date, working memory training has been investigated in four neurodevelopmental disorders: attention deficit/hyperactivity disorder; autism spectrum disorder; intellectual disability and specific learning disorder. The findings indicate that although training appears to produce short-term improvements in the working memory capacity, this does not reliably generalise to other cognitive processes or disorder-specific symptoms. The second paper presents a randomised controlled trial investigating the effects of working memory training for reducing worry in high-worriers. Working memory capacity limitations, and subsequent difficulties in attentional control, are believed to be central to the maintenance of worry. Participants were randomly assigned to complete 15 days of nonadaptive working memory training using a 1-back task, or adaptive working memory training using a n-back task. Training led to improvements in working memory capacity and worry symptoms post-training and at four-week follow-up, with improvements on the adaptive training task significantly correlating with improvements in working memory capacity and worry. These findings are discussed in terms of implications for clinical practice and future research, together with the limitations of the study.</p

Understanding the Barriers and Enablers for Seeking Psychological Support following a Burn Injury

Burn injuries can be traumatic and distressing for patients, with a prolonged period of recovery. This qualitative study aimed to explore adult burn patients’ perceptions of the barriers and facilitators to accessing psychological support in a Regional Burns Service in Southeast England. Participants (five females and six males) were under the care of the burns unit and were not currently accessing psychological support. Eleven semi-structured interviews were conducted. Responses were analysed using thematic analysis. Four main themes highlighted how access to psychology was influenced by communication between the patient and service, beliefs about mental health, environmental challenges, and patient hope. Recommendations for improving access to burn psychological care included (1) the provision of patient resources to increase awareness and reduce stigma; (2) psychological skills training to encourage staff to recognise distress and respond appropriately; (3) staff training in the practice of cultural humility; (4) increasing psychological presence in outpatient appointments and via routine follow-ups

Transitioning from child to adult cleft lip and palate services in the United Kingdom: Are the NICE Guidelines reflected in young adults’ experiences?

Cleft lip and/or palate (CL/P) is one of the most common congenital conditions worldwide. Individuals born with CL/P will embark on a long-term treatment pathway throughout childhood and often into adulthood. As they grow older, young people become more involved in medical decisions. The National Institute for Clinical Excellence (NICE) has published guidance for health professionals on how transitions of responsibility should be managed in health services. The aim of the current study was to examine the extent to which the NICE recommendations are currently being implemented in UK CL/P services according to young adults’ first-hand accounts. Semi-structured interviews were carried out with 15 young adults with CL/P aged 16-25 years. Interview questions were designed to map onto the NICE guidance. Data were analysed to assess whether each guideline was met, partially met, or not met for each individual participant. Overall, findings suggest that further consideration is needed as to how best to implement the recommendations effectively. The introduction of assigned transition workers in CL/P services to co-ordinate transition to adult care offers one possible solution. Focusing on the provision of holistic, patient-centred care, this aspect of the CL/P service could include giving patients access to medical history documentation, liaison with key health professionals including GPs and dental practitioners, and the development of age-appropriate resources to facilitate the transition process

The impact of the Covid-19 pandemic on cleft lip and palate service delivery for new families in the United Kingdom: Medical and community service provider perspectives

ObjectivesProfessionals in the United Kingdom providing care to new families affected by cleft lip and/or palate (CL/P) had to adapt to ensure families’ needs were met during a time of uncertainty due to Covid-19. The aims of this study were to explore the impacts of the pandemic on CL/P care provision for new families from the perspectives of professionals working in medical and community settings along with any personal impact on professionals and their reflections on the future of CL/P care.DesignSemistructured interviews (n  =  27) were completed about experiences from March 2020 to October 2020 with consultant cleft surgeons (n  =  15), lead clinical nurse specialists (n  =  8), and staff working at the Cleft Lip and Palate Association (n  =  4). Transcripts were analyzed using inductive thematic analysis.ResultsThree themes were identified: (1) the impact of Covid-19 on the provision of cleft care in the United Kingdom, including working conditions, delays to treatment, and Covid-19 policies; (2) the impact of the pandemic on professionals’ mental health, including personal distress and concerns about Covid-19 exposure; and (3) reflections on the future of CL/P care, whereby professionals expressed both hope and concern about the Covid-19 recovery effort.ConclusionsThe ongoing Covid-19 pandemic has impacted CL/P service delivery for new families significantly, warranting recommendations for cohesive psychological support for families in addition to a safe and resourced recovery effort. Support for professionals is also suggested, following existing evidence-based models for providers’ needs that address the difficulties of working throughout challenging times

Isolation, uncertainty and treatment delays: Parents’ experiences of having a baby with cleft lip/palate during the Covid-19 pandemic

Objectives Previous literature finds that having a child with a cleft lip and/or palate (CL/P) may pose social and emotional challenges for parents. For parents of children born during the Covid-19 pandemic, such challenges may be heightened. Further, novel demands brought about by the pandemic could have caused additional hardships. The aim of this study was to describe the impact of the pandemic on new parents through qualitative exploration of their experiences. Design Semi-structured interviews were conducted with 14 parents of children born in the United Kingdom with CL/P between January and June 2020, around the start of the pandemic. Data were analysed using inductive thematic analysis. Results Three themes, with sub-themes, were identified. The first theme, “Changes to Healthcare: The Impact of Restrictions and Reduced Contact”, discussed the impact of the pandemic on perinatal care, the care received from the specialist CL/P teams, and parents’ experiences of virtual consultations. The second theme, “Family Functioning During the Pandemic”, covered parental anxiety, fathers’ experiences, and social support. The third theme, “Surgical Prioritisation: Delays and Uncertainty”, addressed changes to surgical protocols, coping with uncertainty, complications associated with delayed surgery, and how parents created positive meaning from this period. Conclusions A range of increased and additional psychosocial impacts for parents were identified, along with several coping strategies, utilization of social support, and the positive aspects of their experiences. As the pandemic continues, close monitoring of families affected by CL/P remains imperative, particularly for those at risk of emotional distress

Staff support during COVID-19 within an acute hospital trust

Background The COVID-19 pandemic has put immense pressure on the National Health Service (NHS) and all healthcare professionals, not only physically but also mentally and the need to fully develop and implement a strategy to protect the mental health of healthcare professionals has never been more urgent. Research has demonstrated that staff can be supported by strengthening teams and offering frequent well-being support. Aims To assess the feedback from delivery of a strategy to provide psychological well-being support to NHS staff during the COVID-19 pandemic and whether this ‘Support for Teams’ initiative made a positive impact on staff and in what way. Methods A mixed methods design was used to gain quantitative and qualitative feedback from staff. Feedback was collected from two groups: Well-being Leads and clinicians providing support and resources to Well-being Leads. Feedback was collected via online forms. Results Collectively, feedback responses were received from 70 staff members. The majority of staff members felt supported and benefitted from the provisions provided. Conclusions This evaluation showed that our healthcare system must continue to proactively implement and adapt staff support strategies to protect the mental well-being of healthcare professionals, both in the context of future health crises and in everyday practice. This study will assist and guide development and adaptations to health and psychological well-being support, ahead of future pandemics and to provide suitable support beyond the COVID-19 pandemic