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In North America, parents are not expected to outlive their child. When they do, neighbours, co-workers, friends and family do not know what to say or do resulting in parents feeling isolated in their grief and left alone to find the support they need. The Paediatric Palliative Care team at Capital Health's, Stollery Children's Hospital (Stollery) in Edmonton, Alberta, Canada began a programme of bereavement follow-ups in April 2002 to offer support to families who had experienced the death of their child. In Part 1 of this article (deJong-Berg and deVlamming, 2005) implementation and the current state of the programme is outlined, and in Part 2 we present the results of the programme evaluation conducted in spring, 2005. Eighty-one families were invited to take part in a satisfaction survey to determine the helpfulness of this bereavement follow-up programme. Twenty-nine parents, representing 21 families, took part. Parents reported that written information received was useful and that they felt supported knowing a resource was available. They also felt also felt that the programme extended the care given by the Stollery staff throughout their child's illness and death. This article reports the findings of the programme evaluation and discusses the implications for practice and future research.

The World Health Organization suggests that palliative care needs to offer a support system to the family during the patient's illness as well as during his/her bereavement. Bereavement follow-up services in paediatrics offer families an additional source of support in their grieving process. This article reviews the development of a bereavement follow-up programme delivered by the paediatric palliative care team and explores the lessons learnt and challenges faced in developing the programme.

The World Health Organization suggests that palliative care needs to offer a support system to the family during the patient's illness as well as during his/her bereavement. Bereavement follow-up services in paediatrics offer families an additional source of support in their grieving process. This article reviews the development of a bereavement follow-up programme delivered by the paediatric palliative care team and explores the lessons learnt and challenges faced in developing the programme. [ABSTRACT FROM AUTHOR]

The care a family receives at the time of perinatal loss can have a significant and lasting impact, hence it is important for healthcare providers to offer quality care that will meet the family's needs. Our hospital embarked on a journey to develop a perinatal bereavement programme that would give compassionate and excellent care to all families who experienced perinatal loss at any time during their pregnancy. Components of our bereavement programme include leadership, administrative and financial support, communication, well-educated and supported staff, and a process for individualised care. A perinatal bereavement programme can help institutions, large or small, to provide quality care for bereaved families and help them through this difficult experience. The purpose of this article is to discuss hospital-wide bereavement care, both on a large scale, detailing the specifics of programme development, and on a smaller scale, individualised care for families. [ABSTRACT FROM AUTHOR]

Background: There is a reliance on voluntary organisations in healthcare. Education is necessary to keep up-to-date with best practice. The authors' aim was to identify education priorities of voluntary organisations that support parents who experience pregnancy/perinatal loss, to inform the development of an education day. Method: A modified Delphi study was undertaken to identify education needs. There were two Delphi rounds, inclusive of free text, where voluntary group experts reflected on responses in order to develop a consensus among the group. Results: There were 12 responses to Round One and seven responses to Round Two. From a list of 10 subjects, Round One identified 64 sub-topics, which were then determined as essential, desirable or not relevant in Round Two. The final 55 sub-topics were included in the education day. Conclusion: This study identified educational needs of voluntary organisations. A standardised approach was necessary to develop an education day that is responsive to their learning needs. [ABSTRACT FROM AUTHOR]

Background: During the COVID-19 pandemic, redeployed staff whose services were temporarily suspended were offered a range of opportunities for work to support efforts to manage the impact of the pandemic. A new team, known as the Cygnets was established within an existing team SWAN, to provide non-specialist end of life and bereavement care during the COVID-19 pandemic. It is important to evaluate new services and one important component of this is understanding the perceptions of those staff who took on the new role. Aim: To evaluate the service from the perspectives of staff. Method: A purposive sample of 14 NHS staff who had worked as Cygnets during the COVID-19 pandemic took part in three focus groups. Results: The themes identified broadly followed the focus group schedule. Participants considered that overall, they had benefited greatly from the challenge of taking on the Cygnet role, and that this had been a learning experience. Conclusions: This was a rapid response to a need for increased provision of compassionate end-of-life care and was a beneficial experience for staff. More research is required into the broader value of the role within the hospital infrastructure. [ABSTRACT FROM AUTHOR]

Background: The rising prevalence of life-limiting conditions in children and young people warrants an evaluation of paediatric palliative care, hospice services and delivered care. Aim: First, this study aimed to develop a deeper understanding of how extended viewing is experienced by the parents of a deceased child (or young person) with a life-limiting condition, based in Australia. Second, this study aimed to evaluate the quality of bereavement care delivered during the first few days after death. Findings: A total of 17 bereaved parents of 13 children completed an interview. In-depth interviews were audio-recorded, transcribed verbatim and thematically analysed. While the authors acknowledge the complexity and individual nature of grief, four broad themes were identified, namely the importance of the 'physical environment' being conducive to spending time with their child; 'seeing their child'; 'time to say goodbye'; and 'supportive care'. Conclusion: The findings of this study reinforce that extended viewing can provide therapeutic benefits for parents, as well as the importance of a skilled palliative care nursing workforce in assisting with grief management. [ABSTRACT FROM AUTHOR]

Background: Little research has been published from a global perspective regarding needs of nurses and midwives related to perinatal bereavement. Objective: To identify needs and concerns of US and Spanish nurses and midwives who have worked with perinatal death and to identify the bereavement interventions they use to help families with this experience. Methods: A cross-sectional study was conducted. Data were collected in 2011 from US (n=44) and Spanish (n=15) nurses and midwives via a questionnaire. Results: Statistically significant differences between the nurses/midwives in each country were found regarding needs relating to knowledge, communication skills and managing personal feelings. Interventions of accompanying, listening, offering keepsakes, baptism discussion, and funeral planning were also found to be significantly different between the two groups. Conclusions: These findings demonstrate a continued need to increase the standard and consistency of perinatal bereavement care worldwide. Bereavement education in nursing curricula and practice settings in both cultures is essential to increase the standard of care. [ABSTRACT FROM AUTHOR]

The article discusses strategies for supporting families undergoing emotional pain and grief. Topics covered include the occurrence of complicated grief that may arise from a maladaptive response, and palliative care setting nurses' referral of parents to resources that have a bereavement care plan and support groups. Also noted is the need for nurses to remain present, show empathy, and engage in effective communication.

Aim: This study aimed to explore the experiences and perceptions of nurses caring for dying patients and their families in the acute medical admission setting. Methods: A qualitative interpretive descriptive methodology was used to explore the experiences and perceptions of 15 nurses recruited via purposive sampling from three acute medical wards of a hospital in Hong Kong. Results: The nurses perceived insufficiency and experienced great mental and physiological strain regarding their caring roles in this setting. Four themes were derived from the findings: lack of preparedness for patients' deaths, reflecting on their own nursing roles for dying patients, reflecting on the meaning of death and their personal experiences of the death of their own family members, and coping with caring for dying patients. Conclusions: There are similarities between these experiences and those of nurses in similar settings in different cultures. There is a need for further research into and educational preparation of nurses in bereavement care and means of coping with somatic, cognitive, behavioural, and emotional responses in an environment where the emphasis is on curing people who are dying rather than caring for them. [ABSTRACT FROM AUTHOR]

Background: 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. Objective: 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. Design: A qualitative exploratory study consisting of a focus group interview with registered nurses from the children's hospice and organ donation teams. Method: 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. Results: 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. Conclusion: 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. [ABSTRACT FROM AUTHOR]

Neonatal death is one of the most challenging elements of nursing and midwifery practice and health professionals supporting parents following such a loss often develop their skills in bereavement care through experience and modelling from experienced peers. For student nurses and midwives who have limited exposure to neonatal death during their clinical experiences, developing the skills to support bereaved parents is a priority during their undergraduate education. Clinical simulations can aid student learning in this complex area of clinical practice and assist them to engage effectively in support for bereaved parents. This paper reports on a qualitative study where the use of neonatal resuscitation simulation is used to prepare a group of undergraduate (double degree) nurse midwives to support bereaved parents surrounding neonatal death. The findings indicate that this simulation can assist students to develop and reflect upon their bereavement support skills in the context of unexpected neonatal death. They also point to the need for equipping students with self care strategies to manage their personal responses to the highly emotive context of neonatal death and supporting the bereaved mother. [ABSTRACT FROM AUTHOR]

METHOD: In-depth organisational case studies of five English hospice bereavement services. ANALYSIS: Thematic analysis of qualitative interviews and focus groups and scrutiny of documentary material provided by the hospice bereavement services. FINDINGS: Despite the differences in philisophies and activities among the hospices a common pattern of support were apparent. All made contact with the bereaved relatives or main carers shortly after the patient's death, all provided information about practical and emotional aspects of bereavement and a mixture of social and therapeutic support. None of the hospices used formal 'risk assessment', but at all sites there were processes in place to identify people who might benefit from bereavement support. Pre-bereavement support and continuity between this and bereavement support were important aspects. CONCLUSIONS: The case studies allowed analysis of individual characteristics and comparison between services. The high response rates suggest that the questionnaires used were acceptable to bereaved people. A clear and explicit rationale for bereavement support activities is a pre-requisite for the development of a cohesive and integrated programme of support to help resolve difficult decisions about individual clients. Pre-bereavement support by hospice staff positively contributes to the person's experience of bereavement. Hospices should address the issue of providing the appropriate level of bereavement support. [ABSTRACT FROM AUTHOR]

Aim: To explore the role of UK district nurses in providing care for adult patients with a terminal diagnosis by reviewing qualitative research. Design: Meta-ethnography was used to conduct the synthesis. Data sources: CINAHL, MEDLINE and British Nursing Index (BNI) were searched comprehensively for primary research relating to the role of UK district nurses in palliative care. Review methods: The abstracts and titles of 700 papers were screened against inclusion criteria, of these 97 full papers were appraised. Some 24 studies reported in 25 papers were selected for inclusion in the synthesis. Findings: In total, five key themes were identified: valuing the role; practical role; relationships with patients and families; providing psychological support; and role uncertainty. Further synthesis yielded two ‘lines of argument’. The concept of the ‘expert friend’ argues that the atypical relationship district nurses cultivate with patients underpins district nurses’ provision of palliative care and profoundly influences the nature of psychological support given. Secondly, the concept of ‘threat and opportunity’ encapsulates the threat district nurses can feel to their traditional role in palliative care through changing health and social policy, while recognising the benefits that access to specialist knowledge and better training can bring. Conclusion: The findings have implications for understanding the motivators and barriers experienced by district nurses delivering palliative care in a time of unprecedented change to community health services [ABSTRACT FROM AUTHOR]

Background: This paper builds on findings from phase one of a participatory action research study, which investigated support for family carers at the end of life in an acute hospital setting in Scotland, UK (Dosser and Kennedy, 2012). The research presented here is the second phase of the participatory action research study, in which nursing staff from an acute hospital ward are involved in ongoing analysis of data and ideas guided by action cycles and reflection. Methods: Two key change initiatives are reported; improving nurses’ communication skills and improving the environment for family carers of loved ones at the end of life within the acute hospital setting. To address these points, nurses were enrolled on a communications skills course, and a new room for family carers was integrated into the hospital. Results: Data were analysed from interviews and questionnaires with the nurses, and from insights gathered in a reflective diary taken by the researcher. The changes implemented improved the confidence of participants in communicating with carers as well as patients and colleagues. Conclusion: The findings highlight practical strategies and communication issues that can potentially impact on the grief experience of family carers, such as having a safe space nearby to rest in private, away from the bedside. [ABSTRACT FROM AUTHOR]

Background: Children's palliative care is a rapidly developing specialism internationally. Bereavement support is an integral component of children's palliative care but to date little research has investigated the bereavement support that mothers in Ireland use following the death of their child. Objective: The aim of this study was to explore mothers' experiences of bereavement support in Ireland following the death of their child from a life-limiting condition. Method: A descriptive qualitative design was used. The study sample was ten mothers who had been bereaved in the previous 5 years. All mothers were recruited to the study by a gatekeeper from a voluntary organisation. Data were obtained through unstructured single interviews and analysed using conventional content analysis. Results: The findings indicate that the mothers relied on a combination of informal and formal bereavement support. In addition to depending on others to provide support, the mothers described their ability to self-support. Conclusions: The findings show that mothers in Ireland use a variety of sources of support following the death of their child from a life-limiting condition. Health professionals involved in caring for families and children with a life-limiting condition should have an understanding of these sources. [ABSTRACT FROM AUTHOR]

Care managers (CMs) have an important role in coordinating care for cancer patients who are in the end-of-life stage; however, little is known about their views of death and their experiences while caring for older cancer patients. This study was conducted to examine CMs' views of death and caring for older cancer patients in a home care setting in Japan. Convenience sampling was undertaken, and 35 offices from 43 approached services agreed to participate. The final valid sample included responses from 136 CMs (90.7%). Most CMs, including nurses, care workers, home helpers, and social workers in home care settings, experienced difficulty in managing the care of cancer patients in the end-of-life stage. Respondents reported a wide array of experiences with end-of-life care, care management, and seminar attendance, and their ages and Frommelt Attitude Toward Care of the Dying (FATCOD) scores were associated factors. Moreover, multiple regression analysis indicated that better attitudes toward caring for the dying were positively associated with seminar attendance. These results suggest that CMs need education about palliative and end-of-life care in order to promote good home care for cancer patients. [ABSTRACT FROM AUTHOR]

Objectives: To evaluate the quality of care offered to terminally ill children and their families in the last days of life in two Brazilian Paediatric Intensive Care Units (PICUs) from the parents' perspectives. Methods: This was a qualitative, exploratory study. Parents of a child who had died in one of the PICUs 6-12 months previously were invited to take part in two interviews: a private meeting with the PICU assistant physician who cared for their child, to discuss and review any outstanding issues related to the diagnosis, treatment, and prognosis, and a recorded interview with a researcher who was not involved in the child's treatment. Data from the interviews with the researcher were posteriorly grouped in categories according to recurrent terms. Results: Six categories emerged, three of which are reported here. The quality of communication was low; the medical staff frequently used technical terms, limiting understanding. Parental participation in the decision-making process was scarce; decisions were based on the medical perspective. Finally, families reported uncompassionate attitudes from the medical staff and excessive technology in the final moments surrounding the child's death, although nurses were highly involved with palliative care measures and demonstrated sympathetic and supportive postures. Conclusion: The interviews uncovered deficiencies in the care provided to parents in the PICUs, indicating a need for changes in practice. [ABSTRACT FROM AUTHOR]

Life-limiting childhood illness is a traumatic experience presenting parents with psychological, physical, and social challenges. While cultural influences affect all parents coping with the life-limiting illness and end-of-life period of their child, little is known about the experiences of Chinese American parents. The purpose of this comprehensive literature review was to describe Chinese American parents' experiences during their children's end-of-life period from a culturally informed perspective. Important themes in the literature are revealed including culture-based phenomena regarding philosophy of life and illness that can affect treatment choices, cultural mores that influence parental behaviour in Western health-care systems, specific communication patterns within families and between families and providers, certain coping risks, and gender-based roles and caregiving activities that have implications for provider communication patterns. The findings are consonant with the larger literature regarding the impact of traditional culture and values on Chinese family and health behaviours. Health professionals must be sensitive to Chinese American parents' communication styles, unspoken concerns, and unresolved cultural conflicts in American health-care settings. Educational interventions may be very helpful in this regard. [ABSTRACT FROM AUTHOR]

Aim: To explore family members' supportive interactions in palliative care and the emotional experiences that they associate with these interactions. Methods: Qualitative individual interviews were performed with bereaved family members recruited from an urban palliative care service in Sweden. The interviews were analysed using inductive qualitative content analysis. Results: Five categories of supportive interactions with staff members were linked with emotional consequences: informational support, supportive encounters, professional focus of staff, a supportive environment, and bereavement support. Having a dialogue with family members nurtured certainty and security, supportive encounters gave a warm and comforting feeling, and bereavement support contributed to feelings of strength. Environmental factors contributed to dignity. Conclusion: Supportive interactions with staff and within a home-like environment help to build resilience if tailored to the family member's own needs. [ABSTRACT FROM AUTHOR]

Objective: To describe Spanish nurses' preparedness to care for hospitalised terminally ill patients and how this translates into care delivery. Methods: An exploratory, sequential mixed methods study with two stages. Stage I used unstructured observations of 22 hospital nurses over 235 hours to understand their daily reality, followed by semi-structured interviews with 21 nurses to elicit their perspectives. Stage 2 was a regional survey (65% response rate) concerned with hospital nurses' opinions of caring for terminally ill patients and their perceived competence. Results: The nurses felt competent to provide physical but not emotional care for terminally ill patients. They reported that care could be improved, particularly through providing more emotional care. This coincided with an observed focus on physical care. The nurses reported a lack of support in caring for terminally ill patients and wanted more education on emotional issues and dealing with their own feelings. Conclusion: There is a need for an integrative approach in Spain that combines an educational programme with a supportive environment, focusing on developing nurses' competence to deliver emotional care and deal with their own feelings. Promoting a supportive environment might enable nurses to change their behaviour when caring for terminally ill patients and deal with patients' emotional as well as physical needs. [ABSTRACT FROM AUTHOR]

This paper reports findings from an exploratory qualitative study concerning end-of-life support for family carers in an acute ward setting. The participants included bereaved carers of patients who had died in an acute ward or hospice, as well as health professionals. Interviews and focus groups were used to collect data. The study provides insights into the perceptions and needs of carers at the end of life and the challenges these present for nursing staff in an acute ward. This paper focuses on one key theme incorporating issues around communication between family and nursing staff and the availability of practical facilities. It provides information that may be beneficial to hospital staff who work in acute areas where there is an expectation they will support carers around the time of death. [ABSTRACT FROM AUTHOR]

Aim: To describe the meaning of Thai Buddhists' lived experiences caring for family members who died a peaceful death in intensive care units. Methods: The study made use of hermeneutic phenomenology. The participants were nine family caregivers from the southern Thailand region. Data was generated from individual interviews, and Van Manen's approach was used to analyse and interpret the data. Findings: Nine themes structured the experiences and were reflected within the four lived worlds of relationality, corporeality, temporality, and spatiality. The participants struggled when making decisions about their family member's life in the context of changing hope. Feelings of stress and exhaustion were common. The participants valued empathetic understanding as a means for maintaining relationships with others in giving and receiving compassionate care. Caring for the self in order to give mindful care and doing one's best in the moment also significantly contributed to achieving a peaceful death. Conclusion: The findings suggest nursing practice guidelines for models of family-centred care and family participation in end-of-life care in intensive care units. [ABSTRACT FROM AUTHOR]

Nurses have key roles in the coordination and delivery of community-based palliative care. The purpose of this study was to examine the differences between rural and urban community nurses' delivery of palliative care services. A survey was distributed to 277 nurses employed by a community agency in Ontario, Canada, and a 60% response rate was obtained. Nurses reported spending 27% of their time providing palliative care. Rural and urban nurses had similar roles in palliative care but rural nurses spent more time travelling and were more confident in their ability to provide palliative care. Both groups of nurses reported moderate job satisfaction and moderate satisfaction with the level of interdisciplinary collaboration in their practice. Several barriers to and facilitators of optimal palliative care provision were identified. The study results provide information about the needs of nurses that practise in these settings and may provide a basis for the development of strategies to address these needs. [ABSTRACT FROM AUTHOR]

Although anticipatory grief is a much-debated and critiqued bereavement concept, it does offer a way of understanding and exploring expected loss that may be helpful in certain situations. In end-of-life care in adult intensive care units, families often act as proxy decision makers for patients in the transition from curative treatment efforts to planned treatment withdrawal. Despite there being a developed evidence base to inform care of families at this time, few of the clinical studies that provided this evidence were underpinned by bereavement theory. Focusing on end-of-life intensive care practices, this paper integrates work on anticipatory grief and family interventions to present a family-centred framework of care. Through this it is argued that the complex needs of families must be more comprehensively understood by doctors and nurses and that interventions must be more systematically planned to improve quality end-of-life care for families in this setting. [ABSTRACT FROM AUTHOR]

The aim of the study was to explore terminally ill patients' and their families' experiences of hospital end-of-life care. The study design was a qualitative approach using interpretive phenomenology, which was applied prospectively. Ten patients and their closest family members were recruited in one Swiss university hospital. Data collection included repeated observations, conversations with patients, and interviews with family members. It was found that people led unique lives; when a terminal illness intruded and during hospital stays, they continued to live their particular life. The hospital was experienced differently, as prison, heaven, or necessary sojourn. A caring stance of the professionals was crucial to patients' and families' sense of being well cared for. When care providers lacked skills or did not recognize patients and family members as persons, they suffered. In contrast, adequate care interventions improved their quality of life. The experience of being in the hospital cannot be separated from patients' and families' life stories. [ABSTRACT FROM AUTHOR]

Aim: To identify the palliative care education needs of registered general nurses (RGNs) and health-care assistants (HCAs) working in care of the older person units (nursing homes). Method: A questionnaire was sent to all RGNs and HCAs working in nursing homes run by the Health Service Executive (HSE) in one health-care region in Ireland. Results: RGNs identified eight specific educational needs: understanding of the dying process; pain and symptom management; improved communication skills; nutritional assessment issues; practical skills; the appropriate use and management of syringe drivers; and the role of complementary therapies. HCAs identified a need to improve their communication skills and clarify their role. Both groups identified the need for support when caring for dying patients and the need to improve their understanding of palliative care and the role of specialist palliative care (SPC) services. There was a significant difference between the RGNs' and the HCAs' level of understanding of palliative care (P=0.00). Conclusion: This study demonstrated that RGNs and HCAs working in care of the older person settings have palliative care educational needs. It also established a difference in the educational background and palliative care understanding of RGNs and HCAs. This study therefore identified the need to develop separate education programmes. [ABSTRACT FROM AUTHOR]

National and international comparative studies on provision of palliative care are lacking and further research would be beneficial for the development of national policies and effective service frameworks in different countries. This literature review focuses on a comparison of the development, structure and provision of the palliative care services in the United Kingdom (UK) and the Czech Republic (CZ). The aim of the review is to find out if the systems used in each country could benefit the development of the services in the other. The historical development of palliative care services and frameworks and the current provision of palliative care services in the CZ and the UK will be described, analysed and compared. The challenges and constraints within the Czech and UK health-care systems preventing delivery of palliative care to all patients with palliative care needs will be identified. The aim is to provide the reader with a simple, but comprehensive picture of palliative care services within the UK and the CZ as they currently exist, offering a building block for possible future research. [ABSTRACT FROM AUTHOR]

Introduction: Children's hospices have the facilities to enable a child to remain at the hospice following their death until the time of the funeral if desired by the family. The use of cold bedrooms (or beds) to reduce the rate of the body's physical deterioration enables the family to have unrestricted access and close proximity to the child throughout the 24-hour period. Aim: To explore how bereaved families experience the child remaining in a cold bedroom following the child's death in the period January 2002-March 2005. Objective: To survey all the families whose child had been cared for in a cold bedroom in one children's hospice in South-East England (n = 34). Method: A retrospective cross-sectional survey using a postal questionnaire was conducted. Questionnaires were sent to the 31 bereaved families who were considered eligible for participation. Response: Sixteen completed questionnaires were returned (51.6%); four families declined participation (12.9%); eleven families did not reply (35.5%). Results: The experiences of sixteen families were obtained. The families expressed that they found the experience physically, practically and emotionally supportive, as they were able to continue to act as the child's parents, to choose and control how their child's care occurred, to say their farewells at their own pace and to plan the funeral of their choice. These results must be interpreted with the clear recognition that the experiences of 48.4% of the sample are unknown. Reasons for non-participation were explored. Conclusion: The study has methodological limitations but presents an investigation into the experiences of parents whose child has been cared for in a cold bedroom. These families all described the experience positively. [ABSTRACT FROM AUTHOR]

This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate around the term 'hospice' versus 'palliative care'; the different and unique needs of children requiring a palliative approach compared with adult hospice patients; and information about planning and beginning the study, including the rationale for a pilot, details about the study site, recruitment and procedures, and data collection and analysis. The results from the pilot study, as well as implications for practice and research are reported in part two. [ABSTRACT FROM AUTHOR]

Aim: To present findings from a review of key literature and from a scoping of current provision of support for children facing the death of a parent. A summary of the findings from these is reported here. Methods: To set out the background and context to the evaluation of a new service aimed at supporting children and families facing the loss of a parent from cancer, key literature was reviewed and a scoping of current bereavement support for children and families was conducted using online searching, telephone and face-to-face communications. Findings: The review processes uncovered a range of national and local bereavement services. Bereavement was reported as a normal life event and part of human experience. Health, education and social services personnel need to respond to individual needs, accepting that not all bereaved children require complex, long-term interventions. Conclusions: At national and global levels there was recognition that the needs of bereaved children require careful assessment. A complex range of initiatives have been developed across the UK aimed at supporting children facing the death of a family member. The fragmented nature of provision makes it difficult to be comprehensive or all-inclusive when describing service provision in this area. [ABSTRACT FROM AUTHOR]

This article will describe how Macmillan nurse facilitators conducted a training needs analysis in order to inform and develop an education programme in palliative care for district nurses. A questionnaire was developed and distributed to all 250 district nursing staff in the north/east sector of Glasgow to identify the priority training issues relating to palliative care. This included all district nursing sisters, first and second level registered nurses and auxiliary nursing staff working within the community setting. An 85% response rate to the questionnaire was achieved and an education programme was developed and delivered to address the needs identified by staff. This article goes on to describe the process of the training needs analysis and the benefits of providing an education programme that addresses the educational needs of staff members. Reference is made to a larger evaluation study which highlights staff members' views on both these points. [ABSTRACT FROM AUTHOR]

Sleep is a complex process known to be essential for health, wellbeing, and optimal physical and psychological functioning. Therefore, sleep disturbance may lead to serious consequences. Advanced cancer patients are known to experience a complex constellation of symptoms requiring round-the-clock care. This reality, coupled with the current demographic, social, economic and health policy trends which are shifting palliative care from the hospital to the community setting, will see family members increasingly assuming responsibility for the provision of this care at home. Despite the positive aspects of caregiving, studies report that families experience stress and exhaustion. Given that patient and family constitute the unit of care in palliative care, this area warrants our attention. This article reviews the literature related to family caregivers' disturbed sleep while caring for someone with advanced cancer. What is known and directions for future research will be addressed. [ABSTRACT FROM AUTHOR]

Background: There are few studies in the literature describing or evaluating the workload of children's community nurses prior to and following the death of a child with a non-oncological life-limiting disorder. Method: A documentary analysis of nursing records of all children under the care of the Lifetime Service who died during a 5 year period was carried out. Results: The number of visits and telephone calls involving children's community nurses in the end of life and bereavement periods was analysed and the level of the input to families found to vary widely. In total, the number of visits ranged from 0-50 (median 8). The total number of telephone calls made or received for each child ranged from 0-127 (median 20). Calls and visits were with a wide range of people relating to diverse subject areas and continued even when children were in hospital. Conclusion: Community children's nurses liase with a wide range of professionals and organisations and the nature of their workload at the end of life is often hidden. [ABSTRACT FROM AUTHOR]

Method: In-depth organisational case studies of five English hospices. Analysis: Thematic analysis of qualitative interviews and focus groups and scrutiny of documentary material provided by the hospice bereavement services. Findings: All of the hospices ran events where bereaved people met with other bereaved people who had been in contact with the hospice. They all offered some form of more intensive one-to-one support, spiritual support, and ran remembrance events. Three types of one-to-one support were offered: Counselling Befriending Support from paid bereavement staff. Ongoing telephone support from trained bereavement volunteers appeared to be an acceptable and cost-effective way of providing low intensity bereavement support. Running social bereavement support groups is difficult and resource intensive. ‘Drop- in’ events appear to perform a useful role for both bereaved people and bereavement services. There seemed to be no readily available sources of support for people with particularly complex bereavement problems. Conclusions: All of the hospices were offering appropriate types of bereavement support that clearly met Components 1 and 2 of bereavement support in the NICE guidance. In the absence of any agreement about ‘best practice’ for adult bereavement support services it is the integration of bereavement support as a central aspect of hospice activity that is most likely to improve bereavement support for adults in the future. [ABSTRACT FROM AUTHOR]

One impact of the baby boom generation and improved medical care is that nursing homes will be the place of care and site of death for growing numbers of frail, older persons dying of chronic progressive illnesses. The nursing home settings may appear to be an appropriate environment wherein residents could receive palliative care, but the literature suggests that provision of such care is replete with challenge. Some of these challenges are external to the nursing home environment and are beyond the setting's control, others have internal origins and to some extent may be under the home's control. In part I of this two-part article, we review and critically analyse the primary external factors identified in the literature — characteristics of the residents — as they impact on the ability of care homes to deliver palliative care. [ABSTRACT FROM AUTHOR]

Aim: To test the validity, reliability and feasibility of using a modified version of Parkes' (1993) Bereavement Risk Index (BRI) and bereavement support protocol in an Australian home hospice care setting. In addition, the study aimed to explore what types of family members are most likely to experience a more difficult grief reaction. Design: A prospective, descriptive study was used. One hundred and fifty bereaved family members participated. Bereaved family members were classified as high, medium or low risk and received a structured bereavement support protocol based on their level of risk as measured by the BRI. Findings: Results indicated that a shorter 4-item version of the BRI was more internally consistent than the longer version and demonstrated good predictive validity when correlated with outcome measures at 3 months following the patient's death. Conclusion: The modified 4-item BRI demonstrated acceptable reliability and validity and was brief and simple to use. Nurses were able to use the instrument with minimal training and were able to adhere to a matched bereavement support protocol. [ABSTRACT FROM AUTHOR]

Aim The purpose of this article is to describe educational needs in end-of-life (EoL) care for staff and families of residents in long-term care (LTC) facilities in the province of Ontario, Canada. Barriers to providing end-of-life care education in LTC facilities are also identified. Design, setting and participants Cross-sectional survey of directors of care in all licensed LTC facilities in the province of Ontario, Canada. Results Directors of care from 426(76.9% response rate) licensed LTC facilities completed a postal-survey questionnaire. Topics identified as very important for staff education included pain and symptom management and communication with family members about EoL care. Priorities for family education included respecting the residents' expressed wishes for care and communication about EoL care. Having sufficient institutional resources was identified as a major barrier to providing continuing education to both staff and families. Conclusion Through examining educational needs in EoL care this study identified an environment of inadequate staffing and over-burdened care providers. The importance of increased staffing concomitant with education is a priority for LTC facilities. [ABSTRACT FROM AUTHOR]

Aim To investigate psychological distress, family functioning and complicated grieving in parents whose child had died from cancer, and as a function of whether: (a) the deceased child had also received stem cell transplant (SCT) any time during curative treatment; and (b) the place of the child's death (home or hospital). Design A cross-sectional case-match design. Sample Fifty-six Australian bereaved parents in two groups: 28 whose child had also received SCT, matched with 28 (on deceased patient variables) whose child had not received SCT. Results Parents in the `SCT group' (n = 28) reported relatively higher levels of depression, anxiety and stress, and - for those whose child had also died in hospital - a greater likelihood of meeting the criteria for traumatic grief than those parents whose deceased child had not received SCT. There were no significant group differences in family functioning. Conclusion Routine psychosocial screening, especially for families undergoing SCT, may contribute usefully to a proactive model of palliative care in identifying parents at risk for complicated bereavement outcomes. [ABSTRACT FROM AUTHOR]

The aim of this article was to critically evaluate the author's role as a hospital-based palliative care nurse in supporting the adolescent child of a dying parent. The approach taken and the resources that were available have been reflected upon. The article explores whether it was possible to adapt the theory of bereavement support for those working with adults within the constraints of a busy acute hospital. It was found that although there were limitations to the amount of support the author could give within her role, there remains a window of opportunity for all healthcare professionals within this field to support parents in preparing their children for bereavement. [ABSTRACT FROM AUTHOR]

Aims This article reports on a small exploratory survey aimed at establishing the perceived training needs of palliative care staff related to supporting people with intellectual disabilities. Methods Questionnaires were collected from a sample of 46 palliative care staff. Respondents were asked to describe 'worrying issues' about supporting a person with intellectual disabilities. Answers were analysed using content analysis. Results Most respondents (37, 80%) highlighted communication as a concern. Other major issues included assessment and symptom control, patient comprehension, empowerment and ethical issues/consent. Discussion Communication and symptom assessment can be challenging, particularly in people with limited verbal communication skills. Palliative care staff need to be aware of the range of communication methods used by people with intellectual disabilities. Conclusion There is a lack of information and training materials around intellectual disabilities for palliative care staff. This needs to be addressed. More work is needed to develop appropriate training in this area. [ABSTRACT FROM AUTHOR]