Children's Hospice Research Articles

Palliative and end of life care for a child: Understanding parents' coping strategies.

Understanding of coping strategies that parents use before the death of their child is crucial and will enable us to best provide support. The current study aimed to explore parents' coping strategies, and map these onto an existing theoretical framework. Bereaved parents and parents of a child with a life-limiting/threatening condition were interviewed to investigate coping strategies, recruited through Intensive Care Units (2 Neonatal, 2 Paediatric, 1 Paediatric Cardiac) and a children's hospice. Analysis focused on coping strategies and mapping these onto the framework. 24 parents of 20 children were interviewed and identified. Parents use a variety of coping strategies (n=25) such as humour, staying positive, advocating and staying strong for others, expressing emotions and preparing, while also living life to the full, supported by others. The themes were successfully mapped onto the theoretical framework, which focuses on the constructs of approach and avoidance, as well as coping for self and others. The findings have provided a detailed account of the breadth and depth of coping strategies parents use, including those classed as avoidance. The strategies were successfully mapped onto the theoretical framework. Future research should investigate changes over times, and associations to negative long-term outcomes.

Implementation of the DIR Model and the DIR/Floortime Approach in the System of Palliative Care for Children

Introduction. One of the systems that can be used in the system of palliative care for children is the Developmental Individual Relationship (DIR)/Floortime concept, which can be flexibly adapted to individual features of a child, and at the same time it has intelligible and clearly-defined tools for work and interaction, that take into consideration not only individual peculiarities of a patient, but also their parents and specialists.
 Purpose. The purpose of the paper was to review the possibilities and prospects of using DIR/Floortime model in the system of palliative care for children.
 Methodology. The paper was prepared on the basis of input from Belarusian Children's Hospice and also took into account experience of implementation of the DIR/Floortime Model (report information of ICDL’ specialists).
 Results and Discussion. In the course of the work the main tasks for providing palliative care to sick children were outlined and 6 points of introduction of the DIR /Floortime concept into this system were singled out.
 Conclusions. The main postulates of the DIR concept fully coincide with the modern principles of palliative support. Using DIR/Floortime Model also can solve urgent tasks of the system of palliative care for children: build a team-based, positive, supportive and safe relationship around a child and family; help to prevent conflicts; improve the emotional background of the child in care

Use of subcutaneous fluids in paediatric palliative care: a case study

Quality of life is a major consideration in children's palliative care, particularly at the end of life. Optimal symptom management is crucial in maintaining quality of life, with the aim being to ensure the child is as comfortable as possible. Ensuring adequate hydration will often be part of symptom management but may be associated with several practical and ethical challenges. Subcutaneous fluid administration in children's palliative care is relatively uncommon, so there is a lack of evidence on the topic. This article demonstrates that it is feasible to use subcutaneous fluid therapy in the children's hospice setting to address patients' hydration needs and manage their symptoms. It presents a case study of a child who received subcutaneous fluids in a children's hospice for dehydration and myoclonus. It uses the case study to discuss subcutaneous fluid therapy in the children's palliative care setting, including its indications and contraindications, administration, complications and important factors to consider.

A Virtual Children's Hospice in Response to COVID-19: The Scottish Experience

This case report describes a pediatric hospice provider in Scotland and their experience implementing a telehospice program in response to COVID-19. Children's Hospices Across Scotland (CHAS) is the only provider of pediatric hospice care in the entire of Scotland, and we describe their experience offering pediatric telehospice. CHAS had strategically planned to implement a telehospice program, but COVID-19 accelerated the process. The organization evaluated its pediatric clinical and wrap-around hospice services and rapidly migrated them to a virtual environment. They creatively added new services to meet the unique needs of the entire family, who were caring for a child at end of life during COVID-19. CHAS's experience highlights the planning and implementing processes of telehospice with key lessons learned, while acknowledging the challenges inherent in using technology to deliver hospice care.

Parents' attitudes towards a difficult situation resulting from the chronic disease of their child.

The family is a reliable and permanent source of support for every human being. It is the key link in the welfare system. The aim of the study is to assess parents' attitudes towards the occurrence of a difficult situation resulting from a child's chronic illness. The study involved randomly selected parents of children with chronic diseases (N=107). The study was carried out at the Dental Clinic of the 'Little Prince' Children's Hospice in Lublin. The study revealed that for parents a difficult life situation is mainly associated with the disability of a family member or a friend, whereas the action approach is the most frequently chosen attitude towards a child's chronic disease. In the examined group of parents, a significant correlation was observed between the age of the parents and the choice of a specific parental attitude towards the child's chronic disease (in terms of intellectual approach). However, no significant correlations were found between the parents' place of residence and the choice of a specific parental attitude towards the chronic disease of a child. During the diagnosis of chronically ill children, parents should also be educated in this regard. Therapy and psychological help, as well as directing parents to relevant support groups, organizations or associations, will prove immensely valuable while coping with a difficult life situation.

When a child is sick: The role of social tourism in palliative and end-of-life care

Drawing upon transformative service research and social tourism literature, this paper explores the relationship between respite care and childhood illness. It focuses specifically upon the short break opportunities attached to respite care offered in children's hospices in the United Kingdom. Pathographies (illness narratives), shared by patients, siblings and family (n = 23), provide unique insights into ways in which each participate in respite care. Participation prompts inclusivity and normality. It offers a break from illness, and contributes to uplifting feelings of optimism, escapism and new beginnings. Conclusions drawn argue the need for healthcare policy to move beyond ‘Dying Well’ narratives into ones which celebrate ‘Living Well with Dying’. Tourism participation has much to offer such a progressive healthcare policy.

Approaches to community-based palliative care provision by children’s hospices in the UK

The number of children in the UK with life-limiting conditions and the demand for home-based palliative care is increasing. Children's hospices remain a dominant provider of palliative care. This study aimed to determine the approaches taken by children's hospices across the UK in meeting the planned and unplanned health needs of children and their families who receive palliative care at home. In addition, the survey aimed to identify the professional composition of community teams and the number of children and families supported by each service. An internet-based questionnaire survey was sent to all children's hospices in the UK, comprising ten questions exploring the size of the team, geographical areas covered, workforce composition, services offered and approaches to managing unplanned, out of hours care. Responses were received from 14 (26%) of the hospices. A total of 1,618 children and their families were being cared for by these hospices, of whom 825 received care at home. Registered nurses constituted the greatest proportion of staff and were employed by all teams. Care provided at home was broadly split into two categories: planned short breaks and responsive palliative nursing. The latter comprised advance care planning, anticipatory prescribing and active symptom control. Out of hours care was usually offered in the form of telephone support. Models of community-based care are evolving to include nurses practising at specialist and advanced levels, allowing more children with increasingly complex conditions to be cared for at home.

The regional model of palliative medical care support of patients with malignant neoplasms

The article considers issues of development of model of palliative care and analysis of its activities. The study was based on the results of medical care provided by palliative service of the Republic of Tatarstan. The palliative service is complex system that unites several different institutions. The palliative care is provided in hospital and out-patient settings. In the oncologic hospital beds are integrated to provide urgent and palliative care to patients with cancer to apply comprehensive complex of medical interventions. Out-patient care is provided by 7 field teams including oncologist (3 teams) and two paramedics (4 teams). Four field teams function day-and-night seven days a week. Since 2014, the "Children's Hospice" unit functions as element of palliative service. Since 2015, in Almetyevsk, functions field department of palliative care attached to polyclinic of oncologic dispensary/ It co0nsists of two field medical teams. The provision of palliative care is to include all stages needed: palliative care offices, outpatient services, inpatient departments and hospices. The integration of palliative care into common health care network makes it possible to apply tangible possibilities and research potential of large medical institutions and advanced technologies of modern medicine as well.

Interdisciplinary Perspectives on the Value of Massage Therapy in a Pediatric Hospice.

Canuck Place Children's Hospice in Vancouver, Canada, has been hosting a massage therapy practicum within the hospice since 2011. The practicum is delivered by upper-level massage therapy students who are supervised by a registered massage therapist and clinical instructor through West Coast College of Massage Therapy. This study aimed to explore clinicians' perspectives on the value of providing massage therapy to support children in hospice care, their families, and staff. The research participants (n = 6) comprised Canuck Place clinicians who have experience with the massage therapy practicum. In this descriptive phenomenological inquiry, semistructured interviews and thematic analysis were used. The findings demonstrated that Canuck Place clinicians valued the massage therapy practicum for its practical support in terms of creating access to massage therapy and self-care in the hospice. Massage therapy was also valued for supporting physical wellness (injury prevention/maintenance and symptom management) and psychosocial wellness (supporting dignity, interconnection, intraconnection, and rest/relaxation and providing a source of comfort/nurturing). This study is the first to explore clinicians' perceptions of massage therapy within a pediatric hospice and contributes to understanding massage therapy's potential role in the support of children, families, and staff within a hospice setting.

Coming 'Home': Place bonding for parents accessing or considering hospice based respite.

Little literature examines the cognitive journey taken by parents considering/receiving hospice care for their child. A constructivist grounded theory study explored 38 parents' views of considering/using a children's hospice. Data analysed from focus groups and interviews identified three main concepts. The focus of this paper is identified as Coming 'Home'. This concept depicts the desire and the sense of searching that parents experienced in trying to find a place, other than their actual home, where their child could access a caring environment and their parents received some respite from caregiving. Despite there being a paradox associated with hospice-based respite, once they had crossed the threshold the parents bonded with the place and experienced rootedness and familiarity. The hospice became a place of living and belonging; a place where they could 'come home'.

A qualitative descriptive analysis of nurses' perceptions of hospice care for deceased children following organ donation in hospice cool rooms.

Following organ donation, bodies of children are generally cared for in hospital mortuaries or by funeral directors, and their families are offered little routine bereavement support. A partnership between an organ donation nursing team and regional children's hospice trialled an initiative where families were offered bereavement support from the hospice, and their child's body was cared for in a 'cool room' after death. Hospice services are usually restricted to children with life-limiting conditions, and their families. To explore the perceptions and experience of nursing staff who are involved in supporting families of children and young people who have been cared for in children's hospice cool rooms after death, following organ donation. A qualitative exploratory study consisting of a focus group interview with registered nurses from the children's hospice and organ donation teams. A purposeful sample of nurses was recruited. Data were collected in a digitally-recorded focus group interview during March 2018. The interview was transcribed and analysed using a qualitative content approach. Six nurses participated in the focus group. Analysis revealed five themes that characterised the perceptions of nurses: (i) barriers to care, (ii) bereavement care for families, (iii) impact on families and staff, (iv) influencers and enablers of change, and (v) sustainability of new practices. Nurses perceived the long-term, responsive and family-centred approach to bereavement support as a strength of the hospice model, reducing the experience of moral distress in organ donation nurses.

‘Juggling amidst complexity’ – Hospice staff's experience of providing palliative care for infants referred from a neonatal unit

Hospice has been pivotal to children's palliative care provision in the United Kingdom (UK) for more than 3 decades. Some hospices have recently expanded to include care of infants transferred from neonatal units as well as antenatal referrals. Despite developments evidence suggests hospice care is often not offered to parents in neonatal units (NNU). This study examines perspectives of 17 staff from 3 children's hospices regarding the challenges and opportunities caring for infants in hospice. Data was collected from 3 focus groups and analysed using a thematic approach. Findings suggest that hospice staff juggle many complex issues when caring for infants at the end-of-life. Such issues centre round the referral process from hospital services borne from an apparent reluctance of hospital staff to let go, through involving hospice. Education, partnership working, planning for all possible outcomes seems crucial in further developing quality palliative care for infants and their families.

The Prevalence of Nonprescription Cannabinoid-Based Medicines in British Children's Hospices: Results of a National Survey.

Background: Almost 50,000 children and young people are affected by life-limiting conditions in the United Kingdom, around a third of which use children's hospices. Anecdotal evidence suggests that cannabinoid-based medicines (CBMs), specifically cannabis oil (CO), are being used by families with increasing frequency to manage distressing symptoms. The use of most nonprescription CBMs in the United Kingdom remains illegal. Objective: The objective of the study was to identify the prevalence of CO use by families who use children's hospices in the United Kingdom, and the approaches taken by those services to manage it. Design: An electronic survey was sent to each of the 54 children's hospices in the United Kingdom between May and July 2018, comprising 10 questions. Results: Forty children's hospices from across the four countries of the United Kingdom responded to the survey, representing 74% of British children's hospices. About 87.5% of hospices knew of children who use CO therapeutically. Sixty-nine percent of those hospices have received requests to administer CO during an episode of care. Approaches by organizations around CO management varied across the sectors, including arrangements for storage, administration, and recording of its use. Hospices highlighted how the lack of available guidance made decision making more challenging. Only a third of responding organizations routinely questioned families about the use of cannabis when prescribing medicines. Conclusion: CO is used extensively by children who use children's hospices. Despite recognizing the use of CO, many hospices are unable to support it. There is a need for clear guidelines on how hospices should approach the care needs of children, allowing hospices to meet the needs of children who use CO, and families in a safe, consistent, and relevant way, safeguarding all children, families, and professionals within the organization.

Evaluation of End-of-Life Care Programs at Emily's House Children's Hospice

Evaluation of End-of-Life Care Programs at Emily's House Children's Hospice

Parents' Experiences of Requests for Organ and Tissue Donation: The Value of Asking

Background A proportion of children die, making them potentially eligible to be organ and/or tissue donors. Not all are approached for donation, and experiences of those parents are not well understood. The aim of this study was to investigate to what extent organ and tissue donation (OTD) is discussed as part of paediatric end-of-life care and to explore parents' and health care professionals' (HCPs) experiences. Methods Multicentre retrospective qualitative interview study with bereaved parents, parents of a child with a long-term condition (LTC) and HCPs recruited through two neonatal intensive care units (ITU), two Paediatric ITUs, a Cardiac ITU and a children's hospice. Parents' and HCPs were interviewed about their views and experiences of discussions about OTD. Results 24 parents of 20 children were interviewed: 21 bereaved parents and 3 parents of a child with a LTC. Seven parents were asked about donation (13 not asked), 4 agreed, 2 donated. 41 HCPs were interviewed. Themes from both parents and HCPS: complexity of donation process, OTD as a coping strategy, the importance of asking and parents' assumptions about health of organs (when donation is not discussed). Additional themes from parents included factors influencing decision making and quality of care, and from HCPs describing what happens in practice and that that raising the topic is difficult. Interpretation The findings add new knowledge to our understanding of parents' assumptions about the value of their child's organs when discussions about OTD are not raised and that HCPs do not routinely ask, are sometimes hesitant to ask in fear of damaging relationships, and the reality of the complexity of the donation process. Findings suggest that given the current levels of awareness around OTD that the topic should be raised. Funding: Great Ormond Street Hospital and the University of Southampton Annual Adventures of Research funding scheme. Declaration of Interest: We declare no competing interests. Ethical Approval: Ethical approval to carry out the study was gained through the University of Southampton, the UK Integrated Research Application System (IRAS; REC reference 15/SC/0492), the ethics committee of the children’s hospice, and R&D approval secured through site-specific procedures for the two academic hospitals.

'Place bonding' in children's hospice care: a qualitative study.

Limited knowledge exists of parents' perceptions and experiences of children's hospices and how these contribute to the varied access and uptake of services. This study aimed to explore parents' perspectives and experiences of a hospice, to understand the barriers and/or facilitators to accessing a hospice, and what characteristics parents wanted from hospice provision. A two-phase qualitative study underpinned by a constructivist grounded theory methodology was employed. Phase 1 used focus groups to collect data from parents of children already accessing the hospice (n=24). Phase 2 used in-depth semistructured interviews with parents of children who did not use the hospice (n=7) and with parents who had previous experience of using a hospice (n=7). A grounded theory of place bonding was developed which illustrates the cognitive journey taken by parents of children with life-limiting conditions considering/receiving hospice care for their child. Finding a place where they belonged and felt at 'home' made the decision to accept help in caring for their child with a life-limiting condition more acceptable. The theory of place bonding offers children's hospices a new perspective from which to view how parents access, accept and build relationships at the hospice.

Evaluation of a pilot service to help young people with life-limiting conditions transition from children's palliative care services.

When young people with life-limiting diagnoses become too old for children's hospice services, they often experience challenges transitioning into adult services. A two-year pilot project was developed to try to aid transitioning, which involved a day service with occasional overnight trips. To evaluate the pilot project. Three focus groups made up of key stakeholders (young people, their parents and staff) were set up and analysed using an adopted thematic analysis framework. The participants consisted of three young people, seven parents and six staff members. Participants described the transition period as a difficult time for both young people and their families, with a perceived lack of adult services available. All groups agreed that the pilot had a positive impact on young people and their families and all were keen for the project to continue. This pilot models a service that could be adopted by other organisations in order to aid the transition between child and adult hospice services, with further potential for application in mental health and special needs services.

Meeting the needs of young adults with life-limiting conditions: A UK survey of current provision and future challenges for hospices.

The aim of this study was to seek views of UK children's and adult hospices on the availability and challenges of providing services for young adults with life-limiting conditions. Internationally, there are a growing number of young adults with life-limiting conditions and/or complex needs which are degenerative, progressive and diverse and involve complex life-long symptom, medication management as well as palliative care. There are 55,721 young adults, aged 18-40 in England, which continues to increase. The hospice sector is experiencing demands to extend services for this population despite concerns about the appropriateness of adult hospices and their nursing staff to provide care for the complex and unfamiliar conditions of this patient group. Evidence is needed of hospices' views and the main challenges faced providing services for young adults. Descriptive cross-sectional survey. xChildren and adult hospices completed an online survey exploring service provision and their views of respite care for young adults with life-limiting conditions from 18years old and onward. Data were collected between October 2015 - February 2016. Respondents (N=76 hospices) reported that children's hospices predominantly provided short breaks and end-of-life care; adult hospices provided mainly symptom management, end-of-life care and day services. Main challenges were lack of existing adult respite services; lack of funding and capacity; lack of a skilled workforce in adult hospices; and the need for better integrated service provision. Examples of good collaborative working were reported. With an increasing population of young adults and pressure on families, it is vital that services work together to find sustainable solutions to the challenges.

The role of hospice in the transition from hospital to home for technology-dependent children-A qualitative study.

To report parent and professional perspectives of step-down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom. In recent years, increasing numbers of children-dependent on long term assisted ventilation have been noted. Meeting the complex physical, emotional and social needs of the child and family is challenging. Many of these children spend extended periods in hospital even when medically stable. This was a qualitative study using an inductive, semantic analytic approach within a realist epistemology. Data collection was carried out in 2013. Interviews took place with parents (n=5) and focus groups with professionals (n=26) who had experience of step-down care. Multiple benefits of step-down in the hospice were clear. Both sets of accounts suggested that for children and families life was "on hold" in hospital. Hospice was considered a home-like environment where the child and family could "live again". Parents reflected that, in hospice they were "living, not existing" while professionals highlighted hospice as nurturing and empowering the whole family, promoting the child's development while safely meeting their clinical needs. The study highlights a number of crucial benefits to the child and family both in the immediate and longer terms. The collective perspectives therefore endorse hospice as a potential viable choice for these children and their families during the always difficult, usually protracted transition from hospital to home.

Providing holistic, specialist palliative care services to children – one paediatricians experience working in a children's hospice

Abstract The specialist provision of paediatric palliative care is a relatively new discipline. This article will review the epidemiology of paediatric palliative care and will discuss the current delivery of this care within the United Kingdom. The author will describe the nature of work within a children's hospice and in particular the role of a paediatrician working within this setting.