Why is corneal donation so rare in children's hospices? A survey of multidisciplinary team members attitudes, knowledge, practice, and experience
Humans; Attitude of Health Personnel; Health Knowledge, Attitudes, Practice; Child; Patient Care Team; Surveys and Questionnaires; Hospices; attitude; children's hospice; corneal donation; Cornea
BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
Giugni C; Cecchi C; Santucci C; Giometto S; Lucenteforte E; Ricci Z
Pediatr Transplant
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/petr.14217" target="_blank" rel="noreferrer noopener">10.1111/petr.14217</a>
Children's palliative care: examination of a nursing rotation programme
Attitude of Health Personnel; Children's hospice; Children's palliative nursing; Clinical Competence; Hospice and Palliative Care Nursing/education; Humans; Job Satisfaction; London; Nursing Staff/education; Pediatric Nursing/education; Program Evaluation; Rotation programmes
An 8-month rotation programme was implemented for five nurses employed in two kinds of children's palliative care environments: hospital wards and hospices. This study reports the views of the nurses completing the rotation. The research drew on appreciative inquiry and involved a pre- and post-rotation interview and questionnaire. Thematic analysis of the interviews revealed seven themes: adjusting to the rotation programme; support mechanisms; being safe; new knowledge and skills; knowledge exchange; misconceptions; future plans. These were supported by the questionnaire findings. Although the nurses identified some frustration at having to undertake competency assessments relating to previously acquired skills, as well as being out of their 'comfort zone', all the participants highly recommended the programme. They commented very positively on the support they received and the overall learning experience as well as the new insight into different aspects of care. In addition, they were able to share their newfound knowledge and expertise with others.
Whiting L; Whiting M; Petty J; O'Grady M
International Journal of Palliative Nursing
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.12968/ijpn.2021.27.1.20" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.1.20</a>
Family centred neonatal palliative care in children's hospices: A qualitative study of parents' experiences
Children's hospice; Family-centred care; Neonatal; Palliative care; Referral
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.
Mendizabal-Espinosa R M; Price J E
Journal of Neonatal Nursing
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jnn.2020.08.005" target="_blank" rel="noreferrer noopener">10.1016/j.jnn.2020.08.005</a>
Experiencing place identity and place belongingness at a children's hospice: Parents' perspectives
Children's hospice; parent perspective; place belongingness; place identity
Children's hospices are key players in the provision of palliative care services for families with children with life-limiting conditions (LLCs). However, evidence suggests that some of the negative terminology/language which surrounds the notions of palliative and hospice care may contribute to the lack of uptake of hospice services by families. This article reports two elements of place bonding: parents' experiences of place identity and place belongingness at a children's hospice in a region in England. Underpinned by a constructivist grounded theory methodology, focus groups were undertaken with 24 parents of children with LLCs accessing a children's hospice. Despite initial reservations associated with the identity of the hospice, parents described how and why their view changed and therefore consequently how they were able to experience the hospice differently. This article demonstrates how parents' views of the identity of the hospice change and how the hospice becomes a place where parents experience a sense of belongingness.
Dunbar H; Carter B
Journal of Child Health Care
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1367493520915134" target="_blank" rel="noreferrer noopener">10.1177/1367493520915134</a>
Effectiveness of a Volunteer Training Program on the Learning Support of Children in Hospice Palliative Care
pediatric palliative care; children with life-threatening conditions; children's hospice; learning support; sharing experiences; volunteers
BACKGROUND: Volunteers are expected to play a key role in children's hospice. However, there is a lack of information about how to cultivate effective volunteer training programs. OBJECTIVE: To verify the effect of a training program on volunteers' confidence in providing learning support and sharing experiences with children with life-threatening conditions and their families in a children's hospice. METHODS: In this pre-post study, participants were 48 undergraduate and graduate students from 3 universities in Japan. They received 5 lectures on children's hospice learning support. They evaluated the training program by rating their self-confidence in meeting each of the 15 program goals on a questionnaire. RESULTS: An exploratory factor analysis of the questionnaire yielded 12 goals in 4 factors: understanding of one's own and others' mental state, accommodating the learning needs of children with life-threatening conditions, understanding and accommodating the physical state of children with life-threatening conditions, and understanding the significance of children's hospice. A paired t test revealed that participants' self-confidence had increased significantly in 3 of these 4 factors after the program. However, the score for accommodating the learning needs of children with life-threatening conditions decreased but not significantly. CONCLUSION: Although it needs some improvements, the program was effective for improving volunteers' self-confidence in and understanding of learning support and sharing experiences with children with life-threatening conditions.
Niinomi K; Soejima M; Hiraga K; Kodama S; Okazaki S; Nakao S
American Journal of Hospice and Palliative Care
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1049909119860249" target="_blank" rel="noreferrer noopener">10.1177/1049909119860249</a>
Pediatric Deaths Attributed to Complex Chronic Conditions over 10 Years in Korea: Evidence for the Need to Provide Pediatric Palliative Care
cause of death; Child; Children's Hospice; complex chronic conditions; infant; Korea; Newborn; Only Child; Palliative Care; pediatric palliative care; Pediatrics; Terminal Care
BACKGROUND: Pediatric palliative care (PPC) is the active total care of children suffering from life-threatening illnesses. Palliative care includes symptom management, psychosocial support, and end-of-life care. Despite significant advances in disease diagnosis and treatment, resources for PPC of children with serious illnesses are limited in Korea. This study aimed to investigate the scale, time trends, disease composition, regional distribution, and unmet needs of children dying from complex chronic conditions (CCCs). METHODS: We examined available information on children who died of CCCs from 2005 to 2014 using the cause of death statistics in Korea. RESULTS: There were 36,808 cases of pediatric deaths in Korea during that 10-year period, one-third (12,515 cases, 34.0%) of which were due to CCCs. In 2014, there were 1,044 cases of pediatric deaths due to CCCs (9.8 deaths per 100,000 children) in Korea. The rate of pediatric deaths due to CCCs has declined over this 10-year period. Among CCCs, malignancy was the most common cause of death overall, as well as in children and adolescents, whereas neonatal disorders were the most common cause of death in infants. Although over 1,000 children die from chronic illnesses each year, there are no hospitals or institutes in Korea that meet the minimum standards for specialized PPC. CONCLUSION: To improve the quality of life of children suffering from CCCs and to support their families who face enormous distress, children with CCCs should be able to access adequate palliative care services. Health authorities should consider supporting the establishment of PPC centers and increasing PPC accessibility in Korea.
Kim MS; Lim NG; Kim HJ; Kim C; Lee JY
Journal Of Korean Medical Science
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3346/jkms.2018.33.e1" target="_blank" rel="noreferrer">10.3346/jkms.2018.33.e1</a>
Exploring the rewards and challenges of paediatric palliative care work - a qualitative study of a multi-disciplinary children's hospice care team
burnout; Child; Children's Hospice; Clinical reflection; Clinical supervision; end of life; hospice care; Hospices; Only Child; Paediatric palliative care; Palliative Care; Qualitative Research; Reward; Staff support; Work-related stress
BACKGROUND: Children's hospices are a key provider of palliative care for children and young people with life-limiting and life-threatening conditions. However, despite recent policy attention to the provision of paediatric palliative care, little is known about the role of children's hospice staff and the factors that may impact on their wellbeing at work. This study explored the rewards and challenges of working in a children's hospice with an aim to identify staff support and development needs. METHODS: We conducted an exploratory, qualitative study involving thematic analysis of semi-structured interviews with 34 staff and three focus groups with 17 staff working in a multi-disciplinary care team in a UK children's hospice. RESULTS: Participants identified rewards and challenges related to the direct work of caring for children and their families; team dynamics and organisational structures; and individual resilience and job motivation. Participants described the work as emotionally intensive and multi-faceted; 'getting it right' for children was identified as a strong motivator and reward, but also a potential stressor as staff strived to maintain high standards of personalised and emotional care. Other factors were identified as both a reward and stressor, including team functioning, the allocation of work, meeting parent expectations, and the hospice environment. Many participants identified training needs for different aspects of the role to help them feel more confident and competent. Participants also expressed concerns about work-related stress, both for themselves and for colleagues, but felt unable to discuss this at work. Informal support from colleagues and group clinical reflection were identified as primary resources to reflect on and learn from work and for emotional support. However, opportunities for this were limited. CONCLUSIONS: Providing regular, structured, and dedicated clinical reflection provides a mechanism through which children's hospice staff can come together for support and learning, and demonstrates an organisational commitment to staff wellbeing and development. Being aware of children's hospice specific rewards and challenges can help to ensure that staff feel supported and competent in their role. Breaking down barriers to discussing work-related stress and enhancing awareness about early signs of burnout is also important.
Taylor J; Aldridge J
Bmc Palliat Care
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-017-0254-4" target="_blank" rel="noreferrer">10.1186/s12904-017-0254-4</a>