Children's Hospice Research Articles

Role of children's hospices in caring for children, young people and families.

Children's hospices are central to specialist palliative care provision for the increasing number of children and young people with life-limiting conditions and their families. These hospices provide holistic care through a range of services, including ongoing care from the point of diagnosis, at the end of life and into bereavement. This article outlines the services provided by children's hospices, while dispelling misconceptions that they exclusively provide care at the end of life. It also explains how these services have developed and evolved as a result of technological advances. It is useful for nurses to be aware of the role of children's hospices, so that they can support the effective care of children and young people with life-limiting conditions and their families.

The Role, Contribution and Impact of Independent Nurse Prescribers and Advanced Nurse Practitioners to the Children's Hospice Workforce

The care needs of babies, children and young people who use children's hospices have changed over the last decade, with children living for longer, with more complexity. Children's hospice workforces have evolved to continue to meet these needs, including a growth in the number of nurses working at specialist and advanced levels, particularly prescribing. A 15-question survey was sent to all 54 UK children's hospices, which aimed to explore the impact of independent nurse prescribing, and specialist and advanced level nursing practice in UK children's hospices. Forty-one organisations responded, representing 76% of UK children's hospices. Increased autonomy and the ability to respond to the dynamic needs of families, and enabling family choice was recognised and valued by prescribers. Challenges included the breadth of needs of children with life-limiting conditions, and the use of medicines that are either unlicenced or used off-licence. Access to clinical supervision and continuing professional development were highlighted as enablers of prescribing practice.

An exploration of managing emotional labour and maintaining professional integrity in children's hospice nursing.

Research exploring nurse-parent relationships in children's hospices is rare. To investigate how children's hospice nurses manage emotional labour and professional integrity in their long-term relationships with parents. A purposive sample of six children's nurses, from hospices across England, recorded audio diaries and participated in telephone interviews. Narratives were thematically analysed. Three overarching, cross-cutting themes were identified-purposeful positioning; balancing personability and professionalism; coping with and counterbalancing emotional labour. All themes were indicative of and/or built upon emotional intelligence constructs, such as self-awareness, self-regulation, appropriate (managed) empathy, social skills and intrinsic motivation. Innate features of children's hospice work were important for perpetuating intrinsic motivation and satisfaction. This study provided an insight into the management of emotional labour and professional integrity by experienced children's hospice nurses. The identification of emotional intelligence skills merits further exploration in this environment, as well as other children's palliative care settings.

Work-related resources and demands predicting the psychological well-being of staff in children's hospices.

This study assessed the work-related resources and demands experienced by children's hospice staff to help identify staff support systems and organizational practices that offer the most potential to prevent staff burnout and enhance well-being at work. The relationships between individual and organizational characteristics, work-related resources and demands, and burnout and work engagement outcomes experienced by children's hospice staff were explored using two surveys: the Children's Hospice Staff survey, completed by UK children's hospice staff, and the Children's Hospice Organisation and Management survey, completed by the Heads of Care. We used structural equation modeling to assess the relationships between the variables derived from the survey measures and to test a model underpinned by the Job Demands-Resource (JD-R) theory. There were 583 staff responses from 32 hospices, and 414 participants provided valid data for burnout and work engagement outcome measures. Most participants were females (95.4%), aged 51-65years old (31.3%), and had more than 15years of experience in life-limiting conditions (29.7%). The average score for burnout was 32.5 (SD: 13.1), and the average score for work engagement was 7.5 (SD: 1.5). The structural model validity showed good fit. Demands significantly predicted burnout (b=4.65, p≤0.001), and resources predicted work engagement (b=3.09, p≤0.001). The interaction between resources and demands only predicted work engagement (b=-0.31, p=0.115). Burnout did not predict work engagement (b=-0.09, p=0.194). The results partly supported the JD-R model, with a clear association between resources and work engagement, even when the demands were considered. Demands were only directly associated with burnout. The findings also identified a set of the most relevant aspects related to resources and demands, which can be used to assess and improve staff psychological well-being in children's hospices in the UK.

Simulated learning for staff at a children's hospice: a quality improvement project.

Simulated learning has well known positive effects but its use in palliative care education is limited. A quality improvement project was undertaken at a children's hospice to develop and evaluate simulation workshops. The aim was to increase the knowledge, skills and confidence of nurses and healthcare assistants in managing challenging situations commonly experienced when caring for children with life-limiting conditions and their families. The Plan, Do, Study, Act (PDSA) model for improvement was used to test simulation workshops on a small scale using a post-workshop questionnaire and reflective diaries. Despite some initial anxiety, participants felt that the workshop had enhanced their confidence, knowledge and skills, particularly in relation to conducting challenging conversations. The project has provided insight and evidence to develop simulated learning at the children's hospice and further afield.

“Holding Families in Uncertainty”: A Framework Analysis of the Role and Impact of Children's Hospices in the Provision of Perinatal Palliative Care

There is growing international evidence of the benefits of early perinatal palliative care for babies and their families. Despite this, inconsistency remains in ways care is provided by services including fetal medicine, maternity and neonatal services, and children's hospices. The aim of this study was to answer the question “ What are the benefits and barriers to family-centered perinatal advance care planning from the perspective of professionals involved in the care of neonates and infants with life-limiting conditions?” Three focus groups comprising hospice practitioners were held across the UK. A lack of awareness of the role of hospices was described as the biggest barrier to referral to hospice services. Practitioners unanimously described having a physical presence alongside teams, as being the biggest contributor to improved multiagency working, facilitated through joint working and education provision. Early referral to hospice services, in parallel with curative services led to better outcomes and experiences of families, according to participants.

The role of children's hospices in perinatal palliative care and advance care planning: The results of a national British survey.

Perinatal palliative care services are increasingly available globally, offering a range of clinical and psychological support services to families during pregnancy, in the neonatal period and following the death of a baby with a life-limiting or life-threatening condition. Little is understood about the role of children's hospice care and how it contributes to effective perinatal palliative care. The study aims to answer the question "what is the role of children's hospices in the provision of perinatal palliative care and advance care planning in the United Kingdom?" An electronic survey was sent to all 54 children's hospices in the United Kingdom between May and June 2022. Thirty hospices responded, representing 54% of the sector. All regions of all four counties are represented. Numbers of referrals to hospices for perinatal palliative care have increased significantly over the last 5 years. Hospices provide a range of services for families and babies, usually from the point of diagnosis or recognition of a life-limiting or life-threatening condition, underpinned with counseling and emotional support. Hospices worked with a range of professionals and services, most commonly fetal medicine and neonatal services. Advance care plans were an important element of effective perinatal palliative care, strengthening parent-professional and interprofessional relationships. Children's hospice services play an important and growing role in the perinatal care of babies and families following the diagnosis or recognition of a life-limiting or life-threatening condition. The family-centered approach to care, from a broad, biopsychosocial perspective means that hospices make a unique and meaningful contribution to both the clinical and psychological needs of families. The family-centered approach to care, from a broad, biopsychosocial perspective means that hospices make an important contribution to both the clinical needs of babies, and psychological needs of families antenatally, in the neonatal period and after death.

Children's hospices: an opportunity to put the mouth back in the body.

Introduction The children and young people who utilise hospice services often have additional oral health care needs and may present with additional challenges in regard to mouth care. Hospice colleagues need support and would benefit from national direction in providing mouth care for this important group.Methods Questionnaires were provided to hospice nursing colleagues, parents and carers to assess current knowledge and confidence around mouth care and diet. An audit was also completed on hospice records to assess the recording of mouth care provision prior to the introduction of Mini Mouth Care Matters. Training was then provided to colleagues in the form of a virtual interactive learning session and a re-audit of hospice records was then completed.Results Almost 30% of colleagues had never received mouth care training and two-thirds of colleagues faced barriers in providing daily mouth care. Overall, 11% of children who accessed hospice services had never visited a dentist and nearly half of the children brushed less than twice a day. The Mini Mouth Care Matters assessment tool resulted in an increase in assessment of the mouth of children using the hospice, along with early identification of problems and improving daily mouth care.Conclusion Mini Mouth Care Matters is transferable to children's hospices and should be extended to all children's hospices nationally.

Palliative care services for children with life-limiting conditions.

Palliative care (PC) for children with life-limiting conditions (LLC) is a holistic approach to achieve the best quality of life. Highlighting collaboration between pediatric and PC services is essential in providing seamless care. Retrospective data obtained including patient cohort, disease profile, place of death, and the resource requirements for children with a LLC in the Mid-West region of Ireland over a 7-year period. Seventy-seven patients were identified (n = 77); five still receiving care, four discharged, and 68 have died. The cohort ranged in age from 1day to 17years with a mean of approximately 6years. Thirty-five percent of patients were less than 1year old. Fifty-one percent were male. Seventy-one percent were referred initially to PC for end-of-life care and 29% for symptom management. Forty-four percent had home support services in place prior to referral to PC. An advanced care plan was created for 65%. Of those that died (n = 68), 70.5% died at home, 25% in hospital, and 4.4% in residential care or a children's hospice. The clinical nurse coordinator for children with life-limiting conditions (CNCCLLC) was involved with 88% of patients. The specialist PC teams were involved with 87%; 65 patients had community support, 31 patients had in-hospital support, and 29 patients were seen by both hospital and community services. Our study highlights the growing number of LLCs and current pediatric and PC services require further resources and development.

Using mobile phones, WhatsApp and phone interviews to explore how children's hospice nurses manage long-term relationships with parents: a feasibility pilot.

Mobile phones are familiar to most nurses, but the applications available for voice recording and transfer of audio files in research may not be. To provide an overview of a pilot study which trialled the use of mobile phones, WhatsApp and phone interviews as a safe and reliable means of collecting data. A pilot study was designed to test the use of: mobile phones as a safe and reliable way to record audio diaries as research data; WhatsApp to transmit the audio files; and phone interviews to explore them. Undertaking the pilot demonstrated that the tools proposed for collecting data were useable and acceptable to the target population and that the researcher's guidance for doing so was satisfactory. New technologies enable innovation but trialling them for useability is important. Confidentiality and consent need to be carefully managed when using WhatsApp to ensure a study is compliant with data protection regulations. Collection of research data digitally and remotely has become increasingly mainstream and relied on during the COVID 19 pandemic. The methods discussed in this article provide solutions for timely data collection that are particularly useful when the researcher is geographically distant from participants. The 'in the moment' reflective nature of the audio diaries could also be applicable to non-research settings - for example, as a method of assisting ongoing professional development and/or collection of reflective accounts.

'I no longer feel alone': meeting the needs of bereaved grandparents through a children's hospice support group.

Children's hospices provide a range of family-centred care services, including bereavement support. Not all hospices provide specific services for grandparents. To explore how a hospice-based bereavement support group supported grandparents in their grief following the death of a grandchild. Grandparents attending a group were invited to complete an anonymous questionnaire. Questionnaires from eight groups, run between 2015 and 2019 were collated and interpreted to identify themes. A total of 121 grandparents attended the groups; 113 returned the questionnaires (93% response). A total of three superordinate themes were identified: environment and space, being with people who understand, and the opportunity to hear the stories of others. Grandparents valued hearing the stories of others, providing an opportunity to reflect on the experience of others. Grandparents felt supported and validated by the group. Facilitated sessions increased coping and resilience of participants, enabling grandparents to support their partner, adult children and surviving grandchildren more effectively.

Care after death in children's hospices: recommendations for moving and handling, and for managing physiological deterioration.

Children's hospices provide a range of services for babies, children and young people who have a life-limiting or life-threatening condition, including care after death in specialist 'cool bedrooms'. Care after death is a challenging but important element of hospice care. The aims of the study were to identify the practices of staff providing care after death in UK children's hospices, notably their moving and handling practices and their management of physiological deterioration, and to produce recommendations that promote safe and consistent practice in moving and handling and in managing physiological deterioration after death in UK children's hospices. An electronic survey was sent to all 54 UK children's hospices. Free-text responses were analysed using deductive content analysis and used to add depth to the quantitative findings. Out of 54 children's hospices, 33 responded to the survey. There were great variations in the way hospices delivered care after death, notably in length of stay, interventions and equipment. The lack of consistent practice grounded in evidence-based policy and training may mean that some staff experience higher levels of stress and anxiety than others and that some staff take risks when providing care after death, particularly to express empathy towards bereaved families. Recommendations are made about moving and handling a child's body after death and managing its physiological deterioration. Hospices can use these recommendations to develop policy and training, standardise what is expected of staff and support practitioners in adequately caring for children after death.

Which children and young people are at higher risk of severe disease and death after hospitalisation with SARS-CoV-2 infection in children and young people: A systematic review and individual patient meta-analysis.

SummaryBackgroundWe aimed to describe pre-existing factors associated with severe disease, primarily admission to critical care, and death secondary to SARS-CoV-2 infection in hospitalised children and young people (CYP), within a systematic review and individual patient meta-analysis.MethodsWe searched Pubmed, European PMC, Medline and Embase for case series and cohort studies published between 1st January 2020 and 21st May 2021 which included all CYP admitted to hospital with ≥ 30 CYP with SARS-CoV-2 or ≥ 5 CYP with PIMS-TS or MIS-C. Eligible studies contained (1) details of age, sex, ethnicity or co-morbidities, and (2) an outcome which included admission to critical care, mechanical invasive ventilation, cardiovascular support, or death. Studies reporting outcomes in more restricted groupings of co-morbidities were eligible for narrative review. We used random effects meta-analyses for aggregate study-level data and multilevel mixed effect models for IPD data to examine risk factors (age, sex, comorbidities) associated with admission to critical care and death. Data shown are odds ratios and 95% confidence intervals (CI).PROSPERO: CRD42021235338Findings83 studies were included, 57 (21,549 patients) in the meta-analysis (of which 22 provided IPD) and 26 in the narrative synthesis. Most studies had an element of bias in their design or reporting. Sex was not associated with critical care or death. Compared with CYP aged 1–4 years (reference group), infants (aged <1 year) had increased odds of admission to critical care (OR 1.63 (95% CI 1.40–1.90)) and death (OR 2.08 (1.57–2.86)). Odds of death were increased amongst CYP over 10 years (10–14 years OR 2.15 (1.54–2.98); >14 years OR 2.15 (1.61–2.88)).The number of comorbid conditions was associated with increased odds of admission to critical care and death for COVID-19 in a step-wise fashion. Compared with CYP without comorbidity, odds ratios for critical care admission were: 1.49 (1.45–1.53) for 1 comorbidity; 2.58 (2.41–2.75) for 2 comorbidities; 2.97 (2.04–4.32) for ≥3 comorbidities. Corresponding odds ratios for death were: 2.15 (1.98–2.34) for 1 comorbidity; 4.63 (4.54–4.74) for 2 comorbidities and 4.98 (3.78–6.65) for ≥3 comorbidities. Odds of admission to critical care were increased for all co-morbidities apart from asthma (0.92 (0.91–0.94)) and malignancy (0.85 (0.17–4.21)) with an increased odds of death in all co-morbidities considered apart from asthma. Neurological and cardiac comorbidities were associated with the greatest increase in odds of severe disease or death. Obesity increased the odds of severe disease and death independently of other comorbidities. IPD analysis demonstrated that, compared to children without co-morbidity, the risk difference of admission to critical care was increased in those with 1 comorbidity by 3.61% (1.87–5.36); 2 comorbidities by 9.26% (4.87–13.65); ≥3 comorbidities 10.83% (4.39–17.28), and for death: 1 comorbidity 1.50% (0.00–3.10); 2 comorbidities 4.40% (-0.10–8.80) and ≥3 co-morbidities 4.70 (0.50–8.90).InterpretationHospitalised CYP at greatest vulnerability of severe disease or death with SARS-CoV-2 infection are infants, teenagers, those with cardiac or neurological conditions, or 2 or more comorbid conditions, and those who are obese. These groups should be considered higher priority for vaccination and for protective shielding when appropriate. Whilst odds ratios were high, the absolute increase in risk for most comorbidities was small compared to children without underlying conditions.FundingRH is in receipt of a fellowship from Kidney Research UK (grant no. TF_010_20171124). JW is in receipt of a Medical Research Council Fellowship (Grant No. MR/R00160X/1). LF is in receipt of funding from Martin House Children's Hospice (there is no specific grant number for this). RV is in receipt of a grant from the National Institute of Health Research to support this work (grant no NIHR202322). Funders had no role in study design, data collection, analysis, decision to publish or preparation of the manuscript.

Why is corneal donation so rare in children's hospices? A survey of multidisciplinary team members attitudes, knowledge, practice, and experience.

Corneal donation is a rare event among pediatric patients dying in children's hospices in Italy. Previous research suggests that lack of knowledge and negative attitude of Health Care Professionals (HCPs) are the most relevant factors for low donation rates in hospice, rather than patient ineligibility or public refusal. We conducted a national survey to explore children's hospice staff's knowledge and attitude toward corneal donation, to survey HCPs confidence in discussing the subject with patients and families, to investigate whether staff members receive specific training about corneal donation and its potential impact on the willingness to raise the topic with patients and families. An anonymous web-based survey with multiple-choice responses was delivered to the team members of seven Italian children's hospices to test their knowledge and attitude about corneal donation. Of the seven children's hospices approached, four agreed to participate with a response rate of 48.5%. Among respondents, 70% declared that they had not received specific training about corneal donation. Results of statistical analysis showed that there were no significant differences in responses between trained and non-trained staff and among the different professionals (nurses, doctors, psychologists, AND social workers) regarding confidence in discussing the subject with patients and families. In our sample of HCPs working in Italian children's hospices, there was no difference in self-reported trust between professionals who reported receiving specific cornea donation training and those who did not. It is remarkable that training on corneal donation was endorsed by a minority of the sample.

The social and physical environmental factors associated with the play of children living with life threatening/limiting conditions: A Q methodology study.

Living with a life threatening/limiting condition changes and challenges children's play. The environment is known to support participation in play, yet there is a lack of evidence highlighting its specific factors contributing to children's play. In this study, we investigated the perspectives of children living with life threatening/limiting conditions with regard to the environmental factors that are related to their engagement in play whilst receiving inpatient healthcare. Twenty-seven children took part in this study. Participants were aged between 5 and 11 years, diagnosed with life threatening/limiting conditions and were receiving care at either a children's hospital or hospice in either Kuwait or the United Kingdom. Children were asked to rank-order a Q set according to their perceived importance. The used Q set composed of social and physical environmental factors. The data were analysed using factor analysis and content analysis. Two shared viewpoints were identified, which represented children from both countries. For Factor 1, the children's need for social connectivity guided their answers regarding the environmental factors. For Factor 2, although children considered being surrounded by others important, their selections of the play conditions directed their play. For both factors, children had relatively little concern for outdoor and the type of play to engage in, with the exception of arts and crafts play activities, which were deemed important. Play settings are important to support rich, social play experiences and opportunities that match children's play preferences. Children living with life threatening/limiting conditions in Kuwait and the United Kingdom have relatively similar play needs.

Moving and Handling Children After Death: An Inductive Thematic Analysis of the Factors That Influence Decision Making by Children's Hospice Staff.

Hospices for children and adolescents in the United Kingdom provide care to the bodies of deceased children in specially designed chilled bedrooms called "cool rooms." In an effort to develop resources to support hospice practitioners to provide this specialist area of care, this study aimed to identify the factors that influence decision making when moving and handling children's bodies after death in a hospice cool bedroom. An internet-based survey was sent to all practitioners employed by 1 children's hospice. A total of 94.9% of eligible staff responded (n = 56). An inductive approach to thematic analysis was undertaken, using a 6-phase methodological framework. Three core themes were identified that inform practitioners' perception of the appropriateness of moving and handling decisions: care of the body, stages of care, and method of handling. The complexity of decision making and variation in practice was identified. Practitioners relied on both analytical and initiative decision making, with more experienced practitioners using an intuitive approach. Evidence-based policy and training influence the perception of appropriateness and the decisions and behavior of practitioners. The development of a policy and education framework would support practitioners in caring for children's bodies after death, standardizing expectations and measures of competence in relation to moving and handling tasks.

About the Conditions, Issues and Problems of Children Palliative Care Using the Example of the Children's Hospice Activity in Saint Petersburg

The topicality of reforming the children palliative care (CPC) system due to the increase of the number of patients with cancer, congenital disorders, neurological damages, injuries consequences, genetically determined pathologies is discussed. The patterns of CPC service development, the importance to track those in need, to determine the required volume, forms, and methods of palliative care, and to develop human capacity were analyzed. The results of “Children's Hospice" (Saint Petersburg) activities in 2014-2019 years are presented alongside with the data on CPC development in Russia. This example shows the advantages of clear routing, establishment of indications for patients’ hospitalization, and availability of high-technology medical care and medications. All innovations have led to the significant change in medical conditions structure (over 80% of patients are children with neurological pathology), to the decrease in the number of hospitalizations, to the increase in the number of children who can get required respiratory support at home. The issues of high employees’ turnover and low staffing level in CPC institutions are discussed.

Паліативна та хоспісна допомога дітям

Актуальність. Паліативна та хоспісна допомога дітям є як філософією, так і методом організації надання індивідуалізованої допомоги дітям із життєво-загрозливими порушеннями. Її метою є підвищення якості життя для невиліковно хворих дітей та їх сімей, попередження та/або мінімізація страждань, оптимізація функціонування організму хворої дитини, надання можливостей для персонального й духовного зростання. Наприклад, у США приблизно 44 тисячі дітей помирають за рік, більшості з них ніколи б не була надана хоспісна допомога. Водночас серед дітей, які потребують такої допомоги, менше 10 % користуються нею наприкінці життя. Мета. Привернення уваги суспільства (та медичної спільноти, зокрема) до необхідності створення достатньої кількості сервісів (центрів) паліативної та хоспісної допомоги дітям, а також наведення прикладу роботи мобільного хоспісу для дітей у Західноукраїнському дитячому спеціалізованому медичному центрі. Результати. Вже шість років працівники Західноукраїнського спеціалізованого дитячого медичного центру на волонтерських засадах опікуються невиліковно хворими дітьми вдома, які були госпіталізовані у відділення анестезіології та інтенсивної терапії у критичному стані і за умови стабілізації стану виписані, а батьків навчають догляду за тяжкохворими дітьми в домашніх умовах. Це насамперед діти з тяжкими вродженими вадами, що не підлягають корекції, з тяжкими органічними ураженнями центральної нервової системи, прогресуючими неврологічними захворюваннями (міастеніями), онкологічними захворюваннями, що не піддаються специфічному лікуванню, генетичними захворюваннями (синдромом Вердніга — Гоффмана, синдромом Едвардса тощо). Основними критеріями нашої співпраці з родинами невиліковно хворих дітей є життя без болю та інших тяжких симптомів, допомога сім’ї, увага та повага, індивідуальний підхід. У січні 2017 року завдяки активності суспільства, партнерській співпраці нам в умовах обмежених ресурсів вдалося створити у Західноукраїнському дитячому спеціалізованому медичному центрі відділення «Мобільний хоспіс для дітей». Сьогодні пацієнтами хоспісу є 26 дітей, які мешкають у різних населених пунктах Львівщини. Чотирнадцять дітей дихають через трахеостому, семеро з них — завдяки портативним апаратам штучної вентиляції легень у режимі допоміжної вентиляції (SIMV + PSV). Вісім наших пацієнтів харчуються спеціальними сумішами через гастростому. Першими в Україні ми почали використовувати такий метод харчування дітей у паліативній терапії. Проте у Львівській області щорічно потребують паліативної допомоги 40–50 дітей. Створення відділення «Мобільний хоспіс для дітей» буде забезпечувати реалізацію мультидисциплінарного підходу до надання паліативної допомоги дітям у всіх його аспектах. Висновки. Паліативна та хоспісна допомога передбачає мультидисциплінарний підхід у лікуванні дитини з обмеженою тривалістю життя внаслідок невиліковного захворювання та спрямована на поліпшення якості життя дитини з тяжкими хронічними захворюваннями, а також на підтримку сім’ї.

Palliative Care in the Republic of Kazakhstan: Current Situation and Legal Regulation

It is known that diseases do not choose either the geography, age, or gender of the patient. And when the patient faces with terrible incurable or progressive diseases, the task arises not only to stop pain, but also to provide maximum supportive psychological assistance to both the patient and his/her relatives. Issues related to the provision of palliative care are relevant for many countries: this is a problem of not one single country or even a group of countries.&#x0D; Talking about palliative care, we mean comprehensive care for a patient diagnosed with an incurable disease, including: assessment and control of chronic pain; evaluation and control of other severe symptoms of developing disease and side effects of drugs; nursing and family training in nursing skills; psychological support for the patient and his/her family members; social and legal assistance.

Family centred neonatal palliative care in children's hospices: A qualitative study of parents' experiences

Since 1982, children's hospices in the UK have provided services where families can care for their children at the end of life (EOL) in a less medicalised environment. More recently, the services of many children's hospices have extended to newborn babies and their families. This paper explores the experiences of three families (five parents) who availed of children's hospices services when their babies required a palliative approach to care. Early diagnosis of a life-limiting condition in pregnancy allowed advanced care planning and enabled parental participation in decision-making before birth. A homely environment, as well as constant support and a sensitive approach from expert staff encouraged parental involvement in all aspects of their baby's care whilst in hospice. Extended time with their baby after death enabled parents to feel connected with their infant. The holistic and family-centred approach to care from children's hospices is highly valued by parents of newborn babies.