Impact of current Australian paid parental leave on families of preterm and sick infants.

AIM: Parents of preterm or sick infants are at increased risk of mental health problems. The financial stress associated with an infant's prolonged hospital stay can have an additional negative effect on families' wellbeing and child development. This study explores parent use of Australian paid parental leave (PPL) and the financial impact of having an infant requiring neonatal care. METHODS: Retrospective, cross-sectional, online survey study conducted from November 2020 to February 2021. Participants were parents of babies born from 1 January 2013, admitted to a neonatal intensive care unit or special care nursery in Australia. The survey explored use of Australian Government and private sector PPL, and financial stress. Parent-reported anxiety and depression were measured using the EuroQol Group 5D-5L Anxiety and Stress Subscale. RESULTS: Two hundred and thirty-one parents responded of which 93% had a preterm infant. Seventy-three percent of infants were hospitalised for more than 1 month, and 34% were readmitted to hospital within the first year following discharge home. Eighty-three percent of parents reported moderate, severe or extreme levels of anxiety or depression. Seventy-six percent reported that having a child in hospital had a moderate-very large financial impact on their family. Parents identified main costs to be travel, food, inability to work and direct medical costs. CONCLUSIONS: Having an infant born preterm or sick has significant emotional and financial implications for families. The current Australian Government PPL scheme does not adequately support parents of preterm or sick infants, and a change is urgently needed to improve outcomes for this vulnerable population.

Missing out on precious time: Extending paid parental leave for parents of babies admitted to neonatal intensive or special care units for prolonged periods.

In Australia, approximately 18% of newborn babies are admitted to a neonatal intensive or special care nursery. While most babies admitted to a neonatal intensive or special care nursery are discharged home within a few weeks, around 6% of babies spend more than 2 weeks in hospital. For the parents of these babies, much of their leave entitlements (Australian Government Paid Parental Leave Scheme is up to18 weeks for the primary care giver and up to 2 weeks for partners) are used before their baby comes home from hospital. The time babies and parents spend together in the early developmental period, during the hospitalisation and when the baby is discharged home, is crucial for optimal child development and bonding. Yet care givers who have a baby admitted to neonatal intensive or special care for extended periods are not currently entitled to any extra parental leave payments in Australia. We recommend the Australian Paid Parental Leave Act is changed to allow primary carers access to 1 week of extra parental leave pay for every week in hospital (for babies admitted to hospital for more than 2 weeks), up to a maximum of 14 weeks. For fathers and partners of these babies, we recommend an additional 2 weeks of extra Dad and Partner Pay. The net cost, taking into account likely productivity benefits, would be less than 1.5% of the current cost of the scheme and would improve health and socio-economic outcomes for the baby, family and society.

A pilot feasibility study of gabapentin for managing pain in children with dystonic cerebral palsy.

BACKGROUND: Gabapentin is often used to manage pain in children with dystonic cerebral palsy, however the evidence for its effectiveness in this population is limited. The primary objective of this feasibility pilot study was to assess the factors which might impact on a future randomised controlled trial including the ability to recruit and retain participants, assess adherence/compliance to the prescribed intervention, and ability to complete all outcome assessments. The secondary objective was to gather preliminary evidence for the effectiveness of gabapentin at reducing pain, improving comfort and reducing dystonia in children with dystonic cerebral palsy. METHODS: This open label pilot study recruited children aged 5-18 years with dystonic cerebral palsy and accompanying pain affecting daily activities from four centres around Australia. Children were prescribed gabapentin for 12 weeks and were assessed at baseline, 6 weeks and 12 weeks. The primary outcome was feasibility of the protocol. Secondary outcomes were pain behaviour, pain intensity, care and comfort, individualised goal setting and dystonia severity. RESULTS: Thirteen children (mean age 10.4 years (SD 2.4yrs), 9 females) were recruited from 71 screened over 15 months. Two children withdrew while eight children experienced side effects. There were issues with adherence to medication dosage regimens and data collection. Improvements were seen in pain behaviour, comfort and pain related goals at 12 weeks. Dystonia was not significantly changed. CONCLUSIONS: Whilst gabapentin has potential to improve pain and comfort in children with dystonic CP, the feasibility of implementing a definitive randomised controlled trial is low. Alternative trials designs are required to further examine the effectiveness of gabapentin in this heterogeneous population. TRIAL REGISTRATION: The trial was registered with the Australian Clinical Trial Registry ( ACTRN12616000366459 ) on 22/03/2016 and the Therapeutic Goods Administration (CT-2016-CTN-00500-1) on 22/06/2016.

Clinician Perspectives of Chronic Pain Management in Children and Adolescents with Cerebral Palsy and Dyskinesia.

AIMS: To explore perspectives of clinicians from interdisciplinary teams on the barriers and facilitators to chronic pain management for children and adolescents with cerebral palsy and dyskinesia. METHODS: Interdisciplinary focus groups (n = 2) were conducted at two Australian tertiary pediatric hospitals. Twenty-five experienced clinicians took part, including ten physiotherapists, six pediatricians, four rehabilitation physicians, four occupational therapists, and one speech and language therapist. An external moderator conducted the focus groups and data were analyzed using inductive thematic analysis. RESULTS: Four key themes emerged: "balancing the intersection of pain and dyskinesia," "difficulty communicating between so many providers," "uncertainty surrounding chronic pain education," and "differing priorities." Key barriers were identified including a lack of access to some interdisciplinary team members and formalized guidance for health professionals regarding chronic pain education. CONCLUSION: Key issues were reported to impact the delivery of coordinated inter-disciplinary chronic pain management at the tertiary level for children and adolescents with cerebral palsy and dyskinesia. In the absence of strong evidence, a strategy for implementing effective chronic pain management for children and adolescents with cerebral palsy and dyskinesia and gaining clinician consensus regarding the best practice management are recommended.

Pain in children with dyskinetic and mixed dyskinetic/spastic cerebral palsy.

AIM: To evaluate pain prevalence and characteristics in children and adolescents with predominant dyskinetic and mixed (dyskinetic/spastic) cerebral palsy (CP) motor types. METHOD: Seventy-five participants with a diagnosis of CP and confirmed dyskinetic or mixed (dyskinetic/spastic) motor type took part in a multisite cross-sectional study. The primary outcome was carer-reported pain prevalence (preceding 2wks) measured using the Health Utilities Index-3. Secondary outcomes were chronicity, intensity, body locations, quality of life, and activity impact. RESULTS: Mean participant age was 10 years 11 months (SD 4y 2mo, range 5-18y). There were 44 males and 31 females and 37 (49%) had predominant dyskinetic CP. Pain was prevalent in 85% and it was chronic in 77% of participants. Fifty-two per cent experienced moderate-to-high carer-reported pain intensity, which was significantly associated with predominant dyskinetic motor types (p=0.008). Pain occurred at multiple body locations (5 out of 21), with significantly increased numbers of locations at higher Gross Motor Function Classification System levels (p=0.02). Face, jaw, and temple pain was significantly associated with predominant dyskinetic motor types (p=0.005). Poorer carer proxy-reported quality of life was detected in those with chronic pain compared to those without (p=0.03); however, chronic pain did not affect quality of life for self-reporting participants. INTERPRETATION: Pain was highly prevalent in children and adolescents with predominant dyskinetic and mixed (dyskinetic/spastic) motor types, highlighting a population in need of lifespan pain management. WHAT THIS PAPER ADDS: Chronic pain prevalence in children and adolescents with predominant dyskinetic and mixed (dyskinetic/spastic) motor types is high. Pain occurs across multiple body locations in predominant dyskinetic and mixed (dyskinetic/spastic) motor types. Less recognized locations of pain include the face, jaw, and temple for predominant dyskinetic motor types.

The lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy.

BACKGROUND: To explore the lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy. METHODS: A convergent parallel mixed methods design was undertaken. First, a quantitative cross-sectional study of participants able to self-report their quality of life was undertaken. This study characterised pain chronicity, intensity, body locations, and quality of life. Second, semi-structured interviews were undertaken with a subset of children and adolescents experiencing chronic pain. RESULTS: Twenty-five children and adolescents took part in the cross-sectional study, 23 of whom experienced chronic pain and 13 of moderate intensity. Pain was often located in multiple bodily regions (6/21), with no trends in quality of life outcomes detected. Eight participated in semi-structured interviews, which identified three key themes including 'lives embedded with dyskinesia', 'real world challenges of chronic pain', and 'still learning strategies to manage their pain and dyskinesia'. CONCLUSIONS: A high proportion of children and adolescents with cerebral palsy and dyskinesia who were able to self-report experienced chronic pain. The physical and emotional impacts of living with chronic pain and dyskinesia existed along a spectrum, from those with lesser to greater extent of their impacts. Children and adolescents may benefit from targeted chronic pain education and management within bio-psychosocial models.

Prevalence and characteristics of pain in children and young adults with cerebral palsy: a systematic review.

AIM: The primary aim of this review is to evaluate the evidence for pain prevalence in children and young adults with cerebral palsy. Secondary aims are to identify pain characteristics and types of pain measurement used in this population. METHOD: Ovid MEDLINE, Embase, CINAHL Plus, and PubMed were searched in October 2016 and updated in November 2017. Two authors independently screened studies according to Preferred Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Pain outcomes were categorized within a biopsychosocial pain framework, with pain prevalence extracted for all recall periods and measurement types. RESULTS: One hundred and six publications from 57 studies met inclusion criteria. Pain prevalence varied widely from 14 per cent to 76 per cent and was higher in females, older age groups, and those classified within Gross Motor Function Classification System level V. Pain was most frequent in the lower limbs, back, and abdomen and associated with reduced quality of life or health status. The influence of pain on psychological functioning, interference, and participation was inconclusive. INTERPRETATION: Variation exists in reported pain prevalence because of sampling bias, inconsistent measurement, varying recall periods, and use of different participant age ranges. WHAT THIS PAPER ADDS: Pain prevalence varies from 14 per cent to 76 per cent in children and young adults with cerebral palsy. Pain is more prevalent in females, older age groups, and children in Gross Motor Function Classification System level V.

Barriers and enablers to telehealth use by physiotherapists during the COVID-19 pandemic.

OBJECTIVES: To investigate the perceived barriers and enablers experienced by physiotherapists whilst delivering community and outpatient services during the COVID-19 pandemic. METHODS: Qualitative study undertaken at a University-affiliated hospital in Melbourne, Australia. Physiotherapists working in the outpatient setting participated in a semi-structured interview. Interviews were analysed using Framework Analysis, with themes mapped to the Theoretical Domains Framework (TDF). RESULTS: From 19 interviews, we identified major themes and mapped these to the TDF domains: 1. The pandemic rapidly closed the knowledge-practice gap; 2. Adaptation of existing skills and integration of new skills were required; 3. Supportive senior leadership helped the transition; 4. Capabilities and confidence improved with time; 5. Environmental factors were crucial to success or failure of telehealth; 6. Access to and delivery of care improved for some; 7. Identification of appropriate patients and future hybrid models of care; 8. Changes in work practices, role certainty and identity; 9. Development of educational resources consolidated knowledge; 10. Socialisation of telehealth and optimism for the future. Within each domain, key barriers and enablers were also identified. CONCLUSIONS: The findings of this study suggest that the delivery of community and outpatient physiotherapy via telehealth during the COVID-19 pandemic was an initial challenge. Growing knowledge, confidence and ability to problem solve barriers enabled physiotherapists to move along the continuum of 'fear' to 'triumph' as the pandemic progressed. These results can be used by clinicians, managers, and academics to guide future workforce planning, hospital environmental design, and service delivery. CLINICAL MESSAGE.

Caregiver perspectives of managing chronic pain in children and adolescents with dyskinetic and mixed dyskinetic/spastic CP with communication limitations.

PURPOSE: Caregivers provide unique insights into managing chronic pain in children and adolescents with dyskinetic and mixed dyskinetic/spastic cerebral palsy with communication limitations. This study explored the personal challenges caregivers face in supporting their child's everyday pain management, including barriers and facilitators to effective chronic pain management. METHODS: Semi-structured interviews were undertaken with ten caregivers (all mothers) of children with either dyskinetic or mixed dyskinetic/spastic cerebral palsy. All children had chronic pain (> 3 months), were aged from 5 to 15 years, had significant functional limitations, and had either limited or no capacity to self-report their pain. Interpretative phenomenological analysis was used to explore caregivers' subjective experiences of managing their child's chronic pain within family, school, and healthcare contexts. RESULTS: Five superordinate themes emerged: 1. the continual challenge of problem solving pain and dyskinesia; 2. the pursuit of a solution; 3. unfulfilled preferences within pain management; 4. all-encompassing effects on families; and 5. the ongoing impacts of pain and dyskinesia with age. CONCLUSION: There is a need for structured pain education and resources targeted towards caregivers and support workers that account for the complex overlay of dyskinesia. There is a further need to ensure caregiver preferences for non-pharmacological pain treatments are met within family-centred care models.

Establishing consensus for the assessment of chronic pain in children and young people with cerebral palsy: a Delphi study.

PURPOSE: Inconsistent and inadequate pain assessment practices in cerebral palsy (CP) have resulted from a lack of standardisation of pain assessment, limited use of appropriate tools and failure to integrate disability and biopsychosocial models. To assist with improving consistency, this study aimed to establish consensus from key stakeholders regarding domains considered essential for measuring chronic pain in children and young people with CP. METHOD: A modified electronic Delphi study was conducted on 83 stakeholders, including clinicians, researchers, people with CP and parents of children with CP. Participants rated 18 domains sourced from existing literature as either "core", "recommended", "exploratory" or "not required". RESULTS: After two rounds of surveys, 12 domains were considered core: pain location, pain frequency, pain intensity, changeable factors, impact on emotional wellbeing, impact on participation, pain communication, influence on quality of life, physical impacts, sleep, pain duration and pain expression. CONCLUSION: These domains reflect the complexity of pain in a heterogeneous population where medical comorbidities are common and communication and intellectual limitations impact significantly on the ability of many to self-report. The domains will be utilised to build a framework of pain assessment specific to children and young people with CP guided by the biopsychosocial model.Implications for rehabilitationChronic pain is under-identified and poorly assessed in the cerebral palsy (CP) population.The perspectives of clinicians, researchers and consumers are vital for developing a framework for chronic pain assessment in CP.Consensus of key stakeholders found 12 domains considered essential to incorporate into a chronic pain assessment model in CP.