Children's Hospice Research Articles

Compassionate extubation in children at hospice and home

At Leeds Paediatric Intensive Care Unit (PICU), whenever possible, patients are offered the opportunity to have mechanical ventilation withdrawn at a children's hospice or in the home. The aims of this study were to examine the views of the PICU staff regarding this choice, to understand their emotional and practical considerations, and to gain insight into the perceived effect on parents. An anonymous open-ended questionnaire and a focus group session invited comments from the multidisciplinary staff on the palliative care service, the options for the child to die outside the PICU, and the practical and emotional effects on themselves and the parents. Several major themes were identified: providing an appropriate environment for death in the PICU itself, parental choice, practical issues of transferring a dying child, emotional issues, service organization, and feedback from families. Overall, the staff thought that parents benefit from the choices offered. The PICU seems to fit neither the 'consultative model' nor the 'integrative model' of previous literature, but rather a 'facilitative model' not previously described.

Developing an e learning module in paediatric palliative care

AimsFollowing the introduction of competency-based training in 2007, the Paediatric Palliative Care Medicine curriculum was produced by the education subgroups of the RCPCH British Society for Paediatric Palliative Medicine and...

Music Therapy Practice in Special Education and Children's Hospice: A Systematic Comparison of Two Music Therapists' Strategies with Three Preadolescent Boys

The investigation described in this paper transpired from discussions between the two authors as we struggled to introduce a referral process for young people moving regularly between a special school and a children's hospice in Melbourne, Australia. It became apparent that each of the authors was conducting music therapy sessions with a number of the same young people in the two different settings in which they worked, sometimes within the same week. Parents organized hospice visits independently of the school system, often for respite rather than illness, and it was not feasible to expect families to communicate current music therapy information between the settings for each visit. After the failure of administrative strategies to foster communication, we began to look for more creative, rather than bureaucratic, ways of improving the consistency of service for the young people in both settings. In considering alternatives, we discussed individual young people, and a pattern began to emerge of similar practices despite the diverse settings. Clientcentered practice that incorporated abundant opportunities for choice and control was consistent across both settings, and we hypothesized that the content of sessions would be similar as a result. We chose to explore the similarities and differences in practice and how these impacted the music therapy experiences for the young people involved. Our intention was to better inform one another of relevant strategies for working with young people with profound and multiple disabilities in order to enhance service provision. In addition, we felt that hospice administrators may be interested in knowing if the skill-set for effective music therapy practice in a children's hospice mirrored that of special school clinicians as this knowledge may inform future employment opportunities.The Music Therapy Treatment Process in Two ContextsChildren's HospiceSetting and assessment. A children's hospice is structurally similar to a pediatric hospital, with nurses acting as the gatekeepers who effectively determine what services will and will not be received by young people in their care (Schwarting, 2005). The support team is modeled on adult palliative care services, incorporating consulting doctors, social workers, and counselors, as well as complementary therapists such as play therapists and music therapists (Pavlicevic, 2005). Although the perception of pediatric palliative care is usually oriented to children with cancer, it is young people with neurodegenerative, genetic, and metabolic disorders who dominate children's hospice services (Hynson & Sawyer, 2001). Many present with profound developmental delay, facing significant physical impairments and intellectual damage as well as long trajectories of illness. Instead of the end-of-life model typical of adult services, children's hospices provide respite services as a priority (Martinson, 1996). The team offers safe and stimulating care so that families may choose to utilize the opportunity for a brief period of separation in which they recuperate or spend quality time with siblings of the young person with a life-threatening illness (Sutherland, Hearn, & Eisten, 1993). In this context, the music therapist is often referred to all of the children in the hospice program on a given day, which typically ranges from five to ten. Service is determined by an emerging and intuitive process (Eaves, 2005).Treatment plan. Children's hospices are similar to pediatric oncology units in that families access services over many years and therapeutic relationships are built up over a number of visits (Dun, 2007). Quality of life is central to treatment in pediatric palliative care, and rather than focusing primarily on pain-control, this is enacted through the provision of choices to the young person and their family (Farrell & Sutherland, 1 998). These choices are broadly related to the nature of care accessed and where the care is provided, and specifically within music therapy, choices promote a sense of feeling understood and heard (Levetown, 1996; Davis, 2005). …

Referral to a specialist paediatric palliative care service in oncology patients

Cancer is the second most common cause of death in children and young people (0-19 years) accounting for 16.2% of deaths in England and Wales in 2005. Only 37.6% children and young people who died from cancer in Yorkshire were referred to Martin House Children's Hospice (MH) during the period 1990-2005. A significantly higher proportion with central nervous system tumours and a significantly lower than expected proportion with leukaemia or lymphoma were referred for palliative care. There is potential to increase the proportion of children and young people with cancer who are referred to specialist palliative care services.

747 Palliative Care for Children and Young People with Neuromuscular Conditions in Yorkshire, Uk 1987-2008

Background: Martin House Children's Hospice (MH) is located in Yorkshire, UK. It cares for children and young people with life threatening or life limiting conditions diagnosed before the age of 19 years until the age of 35 years. Many neuromuscular disorders are life limiting and therefore these children and young people may benefit from specialist palliative care services. Methods: Retrospective study using clinical database at MH from 1987 to 2008. Results: 274 patients with neuromuscular diagnoses were referred to Martin House (MH) during this time period. This is 18% of total referrals during this time period. 70.1% (192) had a diagnosis of Duchenne Muscular Dystrophy (DMD) with a peak in referrals in the year after the opening of MH, 24.1% (66) Spinal Muscular Atrophy (SMA) and 5.8% (other neuromuscular diagnoses). The mean age at referral was 9.7 years (SD 5.2) but this was significantly higher in DMD (mean 11.6, SD 3.9) than the other two groups although age at referral of DMD patients has decreased from a mean of 16 to 10 years during this period. The survival patterns differ significantly between the three groups with children with SMA having a steeper curve and therefore a significantly shorter survival time (mean 0.25 years) compared to DMD patients (mean 8.7 years). Conclusions: Children and young people with neuromuscular diagnosis form a large proportion of the referrals to a children's hospice. The survival patterns highlight the different palliative care needs of the children and young people with subgroups of neuromuscular disease.

Development of a care pathway for babies being discharged from a level 3 neonatal intensive care unit to a community setting for end-of-life care

The development of a care pathway for babies being discharged from a level 3 neonatal intensive care unit (NICU) to a community setting for end-of-life care is discussed. The development of the care pathway was a collaborative project between a level 3 NICU, the local children's hospice and the local primary care trust. The development of the care pathway enables parents to decide where they want their babies to be cared for: NICU, hospice or home care. It enables staff to rapidly refer babies and their families to hospice or community care and provides staff with the support they also need during this difficult time.

The Madison Clinic: Evaluation of a collaborative outpatient paediatric palliative care clinic

A multidisciplinary outpatient clinic at a tertiary care children's hospital supported and staffed by a children's hospice was created to enhance and expand the inpatient palliative care services available to families of children with life-limiting conditions. This clinic was created with input from clinicians, program leaders and families in developing the goals and format. The clinic was evaluated with indicators that included program data from palliative care consultations. This information was collected and recorded on a prospective basis. In the first 29 months of operation, 43 clinics were held, 39 individual patients were seen and there were 59 visits. The majority of visits were for pain and symptom management (75%), while 20% were for assessment for the hospice program. The hospice-palliative care team also provided telephone support, videoconference support and inpatient consultations. Patients reported overall satisfaction with their experiences at the clinic. A major benefit of this outpatient palliative care clinic is its ability to offer continuity of care for patients and their families. It also serves as a preliminary introduction to palliative care, particularly significant for families who are not yet ready to learn about or engage in the full hospice program.

An Educational Program in a Pediatric Hospice Setting

Canuck Place Children's Hospice, a family-centered pediatric hospice in Vancouver, Canada, provides family support and respite, pain and symptom management, and end-of-life care. One of the goals of pediatric hospice palliative care is to create an environment that supports a normal way of life and enhances quality of life. At Canuck Place, a unique school program for children with progressive life-threatening illnesses has been set up to meet this goal. This article describes the Canuck Place educational program, gives insights into the importance and challenges of providing a complete school experience, and discusses the expanded role of the teacher in the pediatric hospice setting.

The Volunteer Program in a Children's Hospice

Canuck Place Children's Hospice (CPCH) is regarded as one of the leading pediatric palliative care systems in the world. Since 1995, it has been providing hospice care free of charge to children and their families living with life-threatening conditions. The pediatric palliative hospice is a relatively new practice in health care, in comparison to the longstanding adult model. As a result, development and implementation of volunteer programs in pediatric hospices is not currently represented in literature. With over 300 volunteers at present, CPCH has built a successful program that can serve as a model in pediatric volunteer services. To present the unique volunteer roles and experience at CPCH, and share ways volunteers work to support the efforts of the clinical team. Strategies to address current challenges in the volunteer program are also addressed. Descriptive design. A current CPCH volunteer discusses the volunteer program. Interviews were conducted with the founding volunteer director of CPCH and current volunteers. The volunteer program at CPCH fully embraces the life of each child and family. Volunteer selection is the groundwork for ensuring a cohesive work force, while training equips volunteers with the knowledge to carry out their role with confidence. Areas of improvement that have been recognized include offering effective feedback to volunteers and delivering adequate level of training for non-direct care roles. The talents of volunteers at CPCH are diverse, and CPCH aims to recognize and thank volunteers for their continuous contributions.

SHELTERED CARE SETTINGS AND GOVERNING STRUCTURE OF CHILDREN'S HOSPICE IN THE U.K.

This study investigates the current state of children's hospice in the U.K. and their architectural characteristics and governing structure. This stud first collected source materials regarding children's hospice, and then generated summary overviews of all facilities. Then, we selected the study hospices in the South East of England, Where most facilities are located. Field visits were conducted at 14 facilities. During the visits, interviews with facility directors were conducted, and other data such as floor plans of facilities and patient statistics were collected. All visits were administered from October through December of 2003.

Tender Mercies

This article describes the initiation of the Children's Hospice and Palliative Care Coalition, an organization that emerged from the concern of two women for the unique needs of children with life-threatening conditions. The Coalition, based in California, was inspired to improve care for children with life-threatening conditions and their families by the 2002 Institute of Medicine report When Children Die:... (which was printed in 2003: ). Its most recent work has been to advance legislative initiatives to develop, implement, and evaluate a pilot project waiver to provide a federally funded pediatric care benefit.

Letters

Walker Morris is launching their annual Children's Charity Calendar Painting Competition, now in its 14th year. It is encouraging budding young artists to win prizes for both themselves and their schools. It is open to children over the Yorkshire and Humber region, aged five to 11, to paint a picture that depicts their favourite month of the year. Winning entries will be used to produce a calendar, sold in aid of Yorkshire's Martin House Children's Hospice Charity.

A WiPP toolkit for healthcare assistants: what's it all about?

British Journal of Healthcare AssistantsVol. 1, No. 1 InterviewA WiPP toolkit for healthcare assistants: what's it all about?Paul Vaughan, Julie SmithPaul VaughanSearch for more papers by this author, Julie SmithSearch for more papers by this authorPaul Vaughan; Julie SmithPublished Online:16 Aug 2013https://doi.org/10.12968/bjha.2007.1.1.23230AboutSectionsPDF/EPUB ToolsAdd to favoritesDownload CitationsTrack CitationsPermissions ShareShare onFacebookTwitterLinked InEmail FiguresReferencesRelatedDetailsCited byEffect of a training programme on the work of GP-based HCAs2 July 2015 | Practice Nursing, Vol. 26, No. 7Developing a high-performance support workforce in acute care: innovation, evaluation and engagement1 August 2014 | Health Services and Delivery Research, Vol. 2, No. 25The role of HCAs in a children's hospice and their L&D needs16 August 2013 | British Journal of Healthcare Assistants, Vol. 6, No. 8Healthcare assistants in general practice: a qualitative study of their experiences7 July 2010 | Primary Health Care Research & Development, Vol. 12, No. 01 1 April 2007Volume 1Issue 1ISSN (print): 1753-1586ISSN (online): 2052-4420 Metrics History Published online 16 August 2013 Published in print 1 April 2007 Information© MA Healthcare LimitedPDF download

Parents’ and Children's Perspectives of a Children's Hospice Bereavement Program

The provision of some form of bereavement services is an integral part of any pediatric hospice program. The Canuck Place hospice program has offered bereavement services since it began in 1995. A mixed-method evaluation of the impact of the Canuck Place program on the families it served during its first two-and-a-half years of operation was conducted. The bereavement services reviewed included follow-up care for families, and bereavement support groups for children and their parents. Eight children were interviewed in the initial phase, and nine completed a survey questionnaire; 28 parents rated their level of satisfaction with various aspects of their experience with the parent support group. Findings indicated that the follow-up component of the program was well-received by family members. When assessing their group experiences, children and parents most appreciated the support and understanding they received, the freedom to express themselves, a diminished sense of isolation, and the normalization of their emotions. Practical considerations when offering bereavement support groups are discussed in this paper.

No 6-Month Limit on Compassionate Care

No 6-Month Limit on Compassionate Care

A survey of the services provided by children’s hospices in the United Kingdom

One in 10,000 children die of a life-threatening condition annually, and in the UK, nearly forty hospices exist to provide care for children with life-threatening illnesses. This study was designed to explore what is offered within children's hospices and how they cared for the growing number of older children and adolescents who are living with life-limiting illness. A questionnaire was sent to all of the children's hospices in the UK (n=40), as listed in the Hospice Information (2003) Hospice Information, Hospice Directory, 2003. A number of different areas were covered e.g. staffing, services offered, nature of care provided and, in relation to older children, their links with adult hospices. Thirty-three of the 40 children's hospices returned the questionnaires--an 83% response rate. Care of adolescents with life-threatening illness was identified as an issue with more than 50% of the hospices stating that they had difficulty in liaison with adult hospices to offer support for adolescents. This study highlights that there is consistency in the high level of care being provided to children up to the age of 18, but provision of care after this age is patchy and not always readily available.

An Evaluation of a Support Group for Junior Doctors Working in Palliative Medicine

Evidence suggests that doctors working in palliative medicine experience stress and burnout. This study has 2 parts. The first investigates a pilot scheme in an inner-city hospice where junior doctors met for confidential every-third-week support sessions with an independent facilitator. Data collected from 25 doctors attending the group suggest that all respondents found it helpful, particularly through sharing clinical experiences, establishing relationships, having a confidential forum for discussion, and having protected time set aside for the group. All indicated they would value similar support in other medical settings. In the second part of the study, contact was made with 62 other adult and children's hospices in the United Kingdom to seek evidence of support provision for junior doctors in other centers. Forty-seven (76%) replied. Six (13%) had a doctors' support group. Twenty (43%) had other support measures, such as close informal support, input by a psychologist, mentoring, and clinical supervision.

The importance of awareness and communication for the inclusion of young people with life‐limiting and life‐threatening conditions in mainstream schools and colleges

Anthea Asprey and Tricia Nash both belong to the Children's Hospice South West Research Group, based at the University of Exeter. In this article, they report one aspect of a research project designed to determine the adequacy of support for young people with life‐limiting and life‐threatening conditions in the education system. They describe here a set of findings drawn from interviews with parents whose children attended LEA‐maintained mainstream schools and colleges of further education. They focus particularly on parents' perceptions of the levels of awareness of their children's needs and concerns and the consequent impact upon their successful inclusion in mainstream education. The findings show clearly that awareness of the needs and difficulties of these young people was seriously lacking. The issue of poor communication, both between school and home and between education and health agencies, was a central concern. Anthea Asprey and Tricia Nash discuss the influence of two models of disability (the medical model and the social model) upon educational practice with regard to these young people. Despite the difficulties reported here, some encouraging and helpful reports of good practice also emerged from the interviews, indicating that inclusion for these young people is not an impossible goal.

Palliative care in children in Wales: a study of provision and need

To establish incidence and prevalence of children needing palliative care in Wales. Children were identified in three ways: (1) from paediatricians using the Welsh Paediatric Surveillance Unit (WPSU); (2) referrals to the specialist palliative medicine service based in Cardiff; and (3) children under the care of the two principal children's hospices serving Wales. All children referred or reported between January 2001 and December 2002 were included. A total of 226 children were identified. Fifty (22%) were identified by paediatricians, 58 (26%) were referred to the specialist paediatric palliative medicine service, 158 (70%) had been under the care of a children's hospice, and 34 (15%) were identified by more than one source. This study identified approximately 3.75 per 10000 children. This is about half the prevalence figures quoted in the ACT/ RCPCH document in 1997. The study may underestimate prevalence. Children needing palliative medicine are still under-recognized in Wales. The overlap between children's hospice care and specialist paediatric palliative medicine is relatively small.

End-of-Life Care in a Children's Hospice Program

A project was completed in 1999 to evaluate the Canuck Place children's hospice program. This article reports only on the end-of-life care component. Results are provided from mail-out surveys with families who required end-of-life care and are supplemented by qualitative data which were collected from interviews with individuals prior to the survey. Eighteen families completed face-to-face interviews and another 70 families completed the mail-out questionnaire developed from the initial interviews. A total of 39 parents responded to the survey section about end-of-life care services. Results indicated that parents were reasonably comfortable discussing death with staff; they generally felt well prepared for their child's death because of the staff; the death of another child had a significant effect on families; parents' wishes at the time of their child's death were very supported by staff; and families were well supported by staff at the time of a child's death. Implications for practice and suggestions for future research are discussed.