Hearing the Child's Voice: Their Lived Experience in the Pediatric Intensive Care Unit

Background: More than 200,000 children are admitted annually to Pediatric Intensive Care Units (PICUs) in the US. Research has shown young children can provide insight into their hospitalization experiences; child reports rather than parental reports are critical to understanding the child’s experience. Information relating to children’s perceptions while still in the PICU is scarce. Aims: The purpose of this qualitative study was to investigate school age children’s and adolescents’ perceptions of PICU while in the PICU; changes in perceptions after transfer to the General Care Unit (GCU); differences in perceptions of school age children/adolescents and those with more invasive procedures. Methods: Interviews were conducted in PICU within 24-48 hours of admission and 24-48 hours after transfer to GCU. Data on demographics, clinical care and number/types of procedures were obtained. Results: Participants were 7 school age children, 13 adolescents; 10 Hispanic; 13 males. Five overarching themes: Coping Strategies, Environmental Factors, Stressors, Procedures/Medications, and Information. Children emphasized the importance of peer support and visitation; adolescents relied strongly on social media and texting. Parent visits sometimes were more stressful than peer visits. Video games, TV, visitors, and eating were diversional activities. In the PICU, they wanted windows to see outside and interesting things to see on the ceiling above them. Children expressed anticipatory fear of shots and procedures, frustration with lab work, and overwhelming PICU equipment. Number of child responses was higher in PICU (927) than GCU (593); the largest difference was in Environmental Factors. Variations between school age children and adolescents were primarily in Coping Strategies, especially in social support. Number of GCU procedures were the same (8 children) or greater (2 children) than PICU procedures. Discussion: Admission to PICU is a very stressful event. Perceptions from children while still in PICU found information not previously found in the literature. Longitudinal studies to identify children’s perceptions regarding PICU hospitalization and post-discharge outcomes are needed.

Parents’ Perception of Medication Treatments for Preschool Children with or at – risk for ADHD

Introduction: ADHD is a chronic medical condition that affects 3-7% of school-aged children. Over the last few years, there has been increased attention with children in the preschool age range. The American Academy of Pediatrics (AAP) recommends that treatment for ADHD in the preschool age range should take the form of behavior modification first, with medication only considered after behavior modification is not effective alone in treating the symptoms (AAP, 2011). However, little research has been done to examine parent perceptions of evidence-based treatment approaches for children in the preschool age range. Objective: This study sought to examine parent perceptions of psychotropic medication use for preschool age (4-6 years) children with or at-risk of ADHD. Method: Data was collected from 176 families who presented for treatment at a clinic in southeast Florida. Parents completed questionnaires about their family background, their child’s behavior, behavioral functioning, and their perceptions of medication treatment. Results: Preliminary results indicate that 50% of parents were not open to the possibility of medication, 44.6% of parents were open to the possibility of medication, and 5.4% of parents chose against medication when a physician recommended it. Results examining the extent to which severity of child behavior problems impacts parent perceptions of medication will also be presented. Conclusion: These findings demonstrate that parents of preschool children are hesitant to consider medication as a treatment option for their young children. The findings of this study are important as more and more young children are being diagnosed with ADHD each year

Task sharing within a managed clinical network to improve child health in Malawi

BACKGROUND: Eighty per cent of Malawi's 8 million children live in rural areas, and there is an extensive tiered health system infrastructure from village health clinics to district hospitals which refers patients to one of the four central hospitals. The clinics and district hospitals are staffed by nurses, non-physician clinicians and recently qualified doctors. There are 16 paediatric specialists working in two of the four central hospitals which serve the urban population as well as accepting referrals from district hospitals. In order to provide expert paediatric care as close to home as possible, we describe our plan to task share within a managed clinical network and our hypothesis that this will improve paediatric care and child health.

PRESENTATION OF THE HYPOTHESIS: Managed clinical networks have been found to improve equity of care in rural districts and to ensure that the correct care is provided as close to home as possible. A network for paediatric care in Malawi with mentoring of non-physician clinicians based in a district hospital by paediatricians based at the central hospitals will establish and sustain clinical referral pathways in both directions. Ultimately, the plan envisages four managed paediatric clinical networks, each radiating from one of Malawi's four central hospitals and covering the entire country. This model of task sharing within four hub-and-spoke networks may facilitate wider dissemination of scarce expertise and improve child healthcare in Malawi close to the child's home.

TESTING THE HYPOTHESIS: Funding has been secured to train sufficient personnel to staff all central and district hospitals in Malawi with teams of paediatric specialists in the central hospitals and specialist non-physician clinicians in each government district hospital. The hypothesis will be tested using a natural experiment model. Data routinely collected by the Ministry of Health will be corroborated at the district. This will include case fatality rates for common childhood illness, perinatal mortality and process indicators. Data from different districts will be compared at baseline and annually until 2020 as the specialists of both cadres take up posts.

IMPLICATIONS OF THE HYPOTHESIS: If a managed clinical network improves child healthcare in Malawi, it may be a potential model for the other countries in sub-Saharan Africa with similar cadres in their healthcare system and face similar challenges in terms of scarcity of specialists.

Congenital nasolacrimal duct obstruction:Comparison of two different treatment algorithms

Purpose: To clarify the most appropriate treatment regimen for congenital nasolacrimal duct obstruction (CNLDO). Methods: A retrospective observational analysis was performed of patients undergoing probing with or without intubation to treat CNLDO in a single institution (Royal Victoria Hospital, Belfast) from 2006 to 2011. Results: Based on exclusion criteria, 246 eyes of 177 patients (aged 0 to 9.8 years with a mean age of 2.1 years) were included in this study: 187 (76%) eyes had successful outcome at first intervention with primary probing, whereas 56 (23%) eyes underwent secondary intervention. There were no significant differences by gender, age, or obstruction complexity between the successful and unsuccessful patients with first intervention. For those patients requiring secondary intervention, 16 of 24 (67%) eyes had successful probing, whereas 22 of 24 (92%) had successful intubation. Patients with intubation as a secondary procedure were significantly more likely to have a successful outcome (P = .037). Statistical analysis was performed using the Fisher's exact test and Barnard's exact test. Conclusions: Primary probing for CNLDO has a high success rate that is not adversely affected by increasing age. This study also indicates that if initial probing is unsuccessful, nasolacrimal intubation rather than repeat probing yields a significantly higher success rate.

Parents’ Preparedness for Their Infants’ Discharge Following First-stage Cardiac Surgery: Development of a Parental Early Warning Tool

Aim The aim of this study was to explore parental preparedness for discharge and their experiences of going home with their infant after the first-stage surgery for a functionally univentricular heart. Background Technological advances worldwide have improved outcomes for infants with a functionally univentricular heart over the last 3 decades; however, concern remains regarding mortality in the period between the first and second stages of surgery. The implementation of home monitoring programmes for this group of infants has improved this initial inter-stage survival; however, little is known about parents’ experiences of going home, their preparedness for discharge, and parents’ recognition of deterioration in their fragile infant. Method This study was conducted in 2011–2013; eight sets of parents were consulted in the research planning stage in September, 2011, and 22 parents with children aged 0–2 years responded to an online survey during November, 2012–March, 2013. Description of categorical data and deductive thematic analysis of the open-ended questions were undertaken. Results Not all parents were taught signs of deterioration or given written information specific to their baby. The following three themes emerged from the qualitative data: mixed emotions about going home, knowledge and preparedness, and support systems. Conclusions Parents are not adequately prepared for discharge and are not well equipped to recognise deterioration in their child. There is a role for greater parental education through development of an early warning tool to address the gap in parents’ understanding of signs of deterioration, enabling appropriate contact and earlier management by clinicians.

Exploring the Experiences of Community-based Children's Nurses Providing Palliative Care

Aim: To explore the experiences of community children’s nurses (CCNs) and children’s palliative care nurses (CPCNs) who provide end-stage palliative care to children with cancer in the family home. Method: A qualitative approach was adopted. One-to-one interviews and facilitated case discussions were undertaken with 30 community nurses who had provided palliative care to a child or young person with cancer. A grounded theory approachwas used for data analysis. Findings: Because of the relative rarity of childhood cancer many CCNs and CPCNs engage infrequently in the palliative care of children or young people. This makes it difficult for them to develop and maintain knowledge and skills. There is a variation in the out-of-hours service provision available to families. Conclusion: Further funding is needed to develop teams of trained, experienced CCNs and CPCNs who can provide palliative care for children and young people 24 hours a day and 365 days a year. Keywords Community nursing, oncology, out-of-hours services, palliative care

Caring for Children Dying from Cancer at Home: a Qualitative Study of the Experience of Primary Care Practitioners

Background. The rarity of childhood cancers makes providing palliative care in the community an unusual event for primary care practitioners. Providing this care requires effective interprofessional collaboration with the team that forms to provide the care often working together for the first and only time. Objective. To explore the experiences of primary care practitioners following their involvement in the palliative care of a child with cancer at home. Methods. The study design was a community-based qualitative study. The study location was the West Midlands region. Purposeful sample of GPs and community nurses involved in providing palliative care to 12 children. One-to-one in-depth interviews with 47 primary care professionals (10 GPs and 37 community nurses) and 5 facilitated case discussions were undertaken. Field notes were documented and grounded theory data analysis undertaken: chronological comparative data analysis identifying generated themes. Results. GPs had minimal input into the preceding care of children undergoing treatment for cancer but sought to re-establish their role at the child’s transition to palliative care. GPs felt they had a role to play and could add value to this phase of care, highlighted their continuing role with the child’s family and acknowledged that they had gained from the experience of contributing. However, lack of specialist knowledge and uncertainty about their role within the team made this more challenging. In contrast, community nurses were routinely involved in both active treatment and palliation care phases. There was little evidence of collaboration between the specialist and primary care professionals involved. There was considerable variation in out of hours provision across cases. Conclusions. Engaging primary care practitioners needs to be more actively anticipated and negotiated at the transition to palliation. Variation in out of hours care is another cause for concern. Enhancing inter-professional collaboration and planning during both active and palliative care phases may help. Keywords. Cancer, family medicine, palliative care, paediatric.

Using Social Worlds Theory to Explore Influences on Community Nurses’ Experiences of Providing Out of Hours Paediatric Palliative Care

Abstract Background: Paediatric oncology palliative care in the community is rare and nationally there is a lack of standardisation of out of hours nursing service provision. Objectives: This paper seeks to explore influences on the experiences of paediatric nurses providing out of hours palliative care within the family home to children with cancer. The study used social worlds theory to aid identification and demonstration of the findings. Methods: Twelve community-based palliative cases were purposively selected from children with cancer treated at one regional centre. Tape-recorded interviews were undertaken with 54 health professionals (general practitioners, community nurses and allied health professionals) involved in providing their palliative care and five facilitated case discussions completed. Data analysis followed a grounded theory approach; chronological comparative data analysis identifying generated themes. Social worlds theory was used as a framework to examine the data. Results: Nurses’ experiences are shaped by their social world and those of the nursing team,child and family and the inter-professional team providing the care. The lack of a formalised service, sub-optimal inter-professional working and impact of social worlds influence the experience of the nurse. Conclusions: Social worlds theory provided a new perspective in understanding these experiences based within a paediatric palliative care setting, knowledge that can be used to inform service provision.

An Exploration of the Data Collection Methods Utilised with Children, Teenagers and Young People (CTYPs)

Background: The impact of cancer upon children, teenagers and young people can be profound. Research has been undertaken to explore the impacts upon children, teenagers and young people with cancer, but little is known about how researchers can ‘best’ engage with this group to explore their experiences. This review paper provides an overview of the utility of data collection methods employed when undertaking research with children, teenagers and young people. A systematic review of relevant databases was undertaken utilising the search terms ‘young people’, ‘young adult’, ‘adolescent’ and ‘data collection methods’. The full-text of the papers that were deemed eligible from the title and abstract were accessed and following discussion within the research team, thirty papers were included. Findings: Due to the heterogeneity in terms of the scope of the papers identified the following data collections methods were included in the results section. Three of the papers identified provided an overview of data collection methods utilised with this population and the remaining twenty seven papers covered the following data collection methods: Digital technologies; art based research; comparing the use of ‘paper and pencil’ research with web-based technologies, the use of games; the use of a specific communication tool; questionnaires and interviews; focus groups and telephone interviews/questionnaires. The strengths and limitations of the range of data collection methods included are discussed drawing upon such issues as of the appropriateness of particular methods for particular age groups, or the most appropriate method to employ when exploring a particularly sensitive topic area. Conclusions: There are a number of data collection methods utilised to undertaken research with children, teenagers and young adults. This review provides a summary of the current available evidence and an overview of the strengths and limitations of data collection methods employed.

Pediatric Oncology Palliative Care: Experiences of General Practitioners and Bereaved Parents

Objective: This qualitative study set in the West Midlands region of the United Kingdom, aimed to examine the role of the general practitioner (GP) in children's oncology palliative care from the perspective of GPs who had cared for a child with cancer receiving palliative care at home and bereaved parents. Methods: One-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents following the death. A grounded theory data analysis was undertaken; identifying generated themes through chronological comparative data analysis. Results: Similarity in GP and parent viewpoints was found, the GPs role seen as one of providing medication and support. Time pressures GPs faced influenced their level of engagement with the family during palliative and bereavement care and their ability to address their identified learning deficits. Lack of familiarity with the family, coupled with an acknowledgment that it was a rare and could be a frightening experience, also influenced their level of interaction. There was no consistency in GP practice nor evidence of practice being guided by local or national policies. Parents lack of clarity of their GPs role resulted in missed opportunities for support. Conclusions: Time pressures influence GP working practices. Enhanced communication and collaboration between the GP and regional childhood cancer centre may help address identified GP challenges, such as learning deficits, and promote more time-efficient working practices through role clarity. Parents need greater awareness of their GP's wide-ranging role; one that transcends palliative care incorporating bereavement support and on-going medical care for family members

What do GPs and Bereaved Parents Think About Paediatric Oncologists and Palliative Care?

Aim The aim of the study was to examine the experiences of bereaved parents and general practitioners (GPs) following the death of a child with cancer within the family home. This presenta-tion focuses on one of the findings; the parent and GP views on the hospital consultants’ involvement in the palliative care. Design A community based qualitative study.Setting West Midlands region, UK. Participants Purposeful sample of 18 GPs and 11 bereaved families. The sample was drawn from the families and GPs of children who had been treated for cancer at a regional childhood cancer centre and who subsequently died within the family home. Methods One-to-one semi-structured tape-recorded interviews were undertaken with GPs and bereaved parents following the death at home of a child with cancer. GPs were contacted three months after the death of the child and the parents at six months. Thematic analysis of the transcriptions was undertaken. Findings Parents described feeling abandoned at the transition to palliation when management of care transferred to the GP. Families did not perceive a seamless service of medical care between hospital and community. Where offered consultant contact was valued by families and GPs. Text and email were used by families as a means of asking the consultant questions. The GPs lacked role clarity where the consultant continued involvement in the care. Conclusions The transition to palliation and the transfer of care to community services needs to be sensitively and actively man-aged for the family and the GP. Medical care between tertiary andprimary care should be seen as a continuum. Improving GP: consultant communication could aid role clarity, identify mecha-nisms for support and advice, and promote the active engagement of the GP in the care. Exploring opportunities for integrated con-sultant: GP working could maximise mutual learning and support and enhance care provision. The level, access and duration of ongoing contact between consultants and families/GPs require clarity.

Managing Transition from Curative to Palliative: GP and Bereaved Parent Experiences

Background Children with cancer in the UK are treated in regional childhood cancer centres (RCCC). Families and health care professionals can develop close working relationships over the often-long duration of treatment. Cancer still accounts for largest numbers of childhood disease related deaths and as home is commonly the choice of location for palliative and end of life care, the child and family can face transitions both from curative to palliative care and from hospital to home. This paper reports on findings relating to these transitions from the perspectives of parents and family doctors highlighting implications for both hospital and community based health care practitioners. Aims To explore the experiences of bereaved parents and family doctors following the death of a child with cancer in the family home. Methods Ethical approval was sought and obtained. In this qualitative study one-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents. The parents were those whose child had received treatment for cancer at a RCCC in the UK and who died at home, the GPs were those involved in the palliative care. Chronological comparative data analysis using grounded theory was completed. Results Cessation of contact with the RCCC when the child receives palliative care at home can be traumatic for parents. Hospital and community based health care professionals need to carefully consider how they establish, maintain and end working relationships with the child and family. Conclusions Findings from this study provide a new perspective to the effective management of transition in paediatric oncology palliative care; managing working relationships. Findings highlight the need for hospital and community based staff to identify and employ strategies that ensure working relationships with families are effectively managed prior to, during and following the child’s transition from curative to palliative care.