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.     

Intensive care nurse practitioners in Australia: A description of a service model in an adult tertiary intensive care unit

BackgroundAlthough well-established internationally, nurse practitioners (NPs) in Australian adult intensive care units (ICUs) are rare. Australian literature clearly highlights the importance of creating ICU NP roles to meet emerging demands. An ICU NP model of care at a metropolitan hospital in Sydney provides care in four core practice areas: complex case management, vascular access, tracheostomy management, and intrahospital transport of critically ill patients. The ICU NPs also provide training and assessment for ICU nurses and medical officers in these same core practice areas and can efficiently meet service gaps in crisis such as the most recent COVID-19 pandemic.ResultsThe ICU NP program described is an innovative model of care that has demonstrated potential benefits to patients and their families. Potential benefits to the healthcare system including supporting advanced practice nursing development in regional and rural Australia and in addressing future ICU workforce issues are also identified. This model of care provides a clear role and structure for the integration of NPs in the adult ICU. Research to evaluate the impact of the role is required and is underway.ConclusionsThis model is being used to develop a national adult ICU NP fellowship training program for ICU transitional NPs preparing for endorsement or endorsed NPs who require additional ICU-specific training. This immersive clinical training program combined with didactic learning modules offers a framework to support the implementation of the adult ICU NP role as well as a framework for NP fellowship programs in other specialties.     

End-of-life care in intensive care units: family routines and environmental factors

The purpose of this study was to describe family care routines and to explore environmental factors when patients die in Swedish intensive care units (ICUs). The main research questions were: what are the physical environmental circumstances and facilities when caring for patients in end‐of‐life and are there any routines or guidelines when caring for dying patients and their families? A questionnaire was sent to 79 eligible Swedish ICUs in December 2003, addressed to the unit managers. The response rate was 94% (n = 74 units). The findings show that, despite recommendations highlighting the importance of privacy for dying ICU patients and their families, only 11% of the respondents stated that patients never died in shared rooms in their ICU. If a patient dies in a shared room, nurses strive to ensure a dignified good‐bye by moving the body to an empty room or to one specially designated for this purpose. The majority (76%) of the units had waiting rooms within the ICU. The study also revealed that there is a need for improvements in the follow‐up routines for bereaved families. Many units reported (51%) that they often or almost always offer a follow‐up visit, although in most cases the bereaved family had to initiate the follow‐up by contacting the ICU. Guidelines in the area of end‐of‐life care were used by 25% of the ICUs. Further research is necessary to acquire a deeper knowledge of the circumstances under which patients die in ICUs and what impact the ICU environment has on bereaved families.     

Evaluation of a nurse education workshop on children's grief

This paper provides an overview of the development and evaluation of an educational program to increase the knowledge of hospice and paediatric nurses who support grieving children and improve their attitudes toward death and bereavement. The specific target groups for the project included nurses providing care through community-based hospice services and inpatient palliative care units, as well as nurses providing inpatient and community-based care at a children's teaching hospital. Fifty-nine nurses from hospice, community and inpatient settings participated in three workshops. Results indicated that the workshop produced a sustained improvement in bereavement knowledge among the nurses and an improvement in their attitudes toward death and bereavement.     

Perceived Changes in Adult Family Members' Roles and Responsibilities During Critical Illness

An exploratory design was used to study the effects of critical care hospitalization on family roles and responsibilities of adult family members and how these effects changed over time. A convenience sample of 52 subjects from pediatric, neonatal, surgical, medical, and cardiovascular intensive care units was used. Data were collected using an open-ended question contained in the Iowa ICU Family Scale (IIFS). Using qualitative techniques, seven themes were identified: (a) Pulling together, (b) Fragmentation of families, (c) Increased dependence, (d) Increased independence, (e) Increased responsibilities, (f) Change in routine, and (g) Change in feelings. These findings indicate that nurses need to implement family-centered interventions such as role supplementation programs or identification of support systems to decrease role strain and role overload in families during a crisis.     

Important clinician information needs about family members in the intensive care unit

PurposeClinicians often lack key information regarding intensive care unit (ICU) families. Our objective was to identify (1) important information for clinicians to know about ICU families when making decisions and (2) important information for families to know about patients from clinicians.Materials and methodsWe identified important information items through a literature review and semistructured interviews. A separate cohort of family members, nurses, and physicians from 2 ICUs in a single institution were asked to prioritize the identified information as necessary for decision making.ResultsWe identified 21 items important for clinicians to know about families and 32 items important for families to know about patients from clinicians. Themes important for clinicians to know about family members included family background, questions, understanding, goals, concerns, well-being, and requests for additional help. Themes important for families to know about the patient included diagnosis, treatments, prognosis, clinical status, schedule, comfort, goals of care, medical team, and family participation.ConclusionsThrough qualitative and quantitative analysis, we identified important information for ICU clinicians to know about family members and for family members to know about patients. The identified information can be used to guide strategies and tools to improve assessment of and communication with families.     

Family participation in care to the critically ill: opinions of families and staff

Background Allowing family members to participate in the care of patients in intensive care units (ICUs) may improve the quality of their experience. No previous study has investigated opinions about family participation in ICUs.Methods Prospective multicenter survey in 78 ICUs (1,184 beds) in France involving 2,754 ICU caregivers and 544 family members of 357 consecutive patients. We determined opinions and experience about family participation in care; comprehension (of diagnosis, prognosis, and treatment) and satisfaction (Critical Care Family Needs Inventory) scores to assess the effectiveness of information to families and the Hospital Anxiety and Depression score for family members.Results Among caregivers 88.2% felt that participation in care should be offered to families. Only 33.4% of family members wanted to participate in care. Independent predictors of this desire fell into three groups: patient-related (SAPS II at ICU admission, OR 0.984); ICU stay length, OR 1.021), family-related (family member age, OR 0.97/year); family not of European descent, OR 0.294); previous ICU experience in the family, OR 1.59), and those related to emotional burden and effectiveness of information provided to family members (symptoms of depression in family members, OR 1.58); more time wanted for information, OR 1.06).Conclusions Most ICU caregivers are willing to invite family members to participate in patient care, but most family members would decline.Supported by a grant (AOR1004) from the Assistance Publique des Hôpitaux de Paris and the Direction Régionale de la Recherche Clinique. Affiliations of the authors are listed in the Appendix     

End-of-life care for the critically ill: A national intensive care unit survey

OBJECTIVE: One in five Americans dies following treatment in an intensive care unit (ICU), and evidence indicates the need to improve end-of-life care for ICU patients. We conducted this study to elicit the views and experiences of ICU directors regarding barriers to optimal end-of-life care and to identify the type, availability, and perceived benefit of specific strategies that may improve this care. DESIGN: Self-administered mail survey. SETTING: Six hundred intensive care units. PARTICIPANTS: A random, nationally representative sample of nursing and physician directors of 600 adult ICUs in the United States. INTERVENTIONS: Mail survey. MEASUREMENTS AND MAIN RESULTS: We asked participants about barriers to end-of-life care (1 = huge to 5 = not at all a barrier), perceived benefit of strategies to improve end-of-life care, and availability of these strategies. From 468 ICUs (78.0% of sample), 590 ICU directors participated (406 nurses [65.1% response] and 184 physicians [31.7% response]). Respondents had a mean of 16.6 yrs (sd 7.6 yrs) of ICU experience. Important barriers to better end-of-life care included patient/family factors, including unrealistic patient/family expectations 2.5 (1.0), inability of patients to participate in discussions 2.7 (0.9), and lack of advance directives 2.9 (1.0); clinician factors, which included insufficient physician training in communication 2.9 (1.1) and competing demands on physicians' time 3.0 (1.1); and institution/ICU factors, such as suboptimal space for family meetings 3.5 (1.2) and lack of a palliative care service 3.4 (1.2). More than 80% of respondents rated 14 of 14 strategies as likely to improve end-of-life care, including trainee role modeling by experienced clinicians, clinician training in communication and symptom management, regular meetings of senior clinicians with families, bereavement programs, and end-of-life care quality monitoring. However, few of these strategies were widely available. CONCLUSIONS: Intensive care unit directors perceive important barriers to optimal end-of-life care but also universally endorse many practical strategies for quality improvement.     

The management of bereavement on intensive care units

Objective To investigate the management of the bereaved on Intensive Care Units (ICU) throughout the United Kingdom, and to identify inadequacies that may exist either in the provision of staff training in dealing with bereavement or in the facilities or support available for the bereaved.Design Questionnaires were sent to the senior nurse and senior doctor in all general ICUs with more than four beds nationwide. The questions asked about nursing and medical practice around the time of a patient's death, as well as about staff attitudes towards, and training in, dealing with bereavement and the support they received for this role.Results We obtained a 68% (293/430) response rate. Most ICUs had facilities for relatives, but little for the specific needs of the bereaved. Only 6% of doctors and 21% of nurses had training in dealing with bereavement and grieving. A staff support group was available in 23% of ICUs, and 75% of the remainder thought it would be useful to have one. Lack of staff training and poor facilities for relatives were identified as the major concerns of ICU staff.Conclusion Many doctors and nurses working in Intensive Care Units feel inadequately trained to deal confidently with the bereaved. A minority of ICUs have support mechanisms available for their staff, inspite of the perceived need for them. Furthermore, many ICU staff feel the facilities they are able to offer the bereaved are inadequate. We have identified the major inadequacies and the needs of ICU staff for improved training. Meeting these needs would play a significant role not only in reducing staff stress but also minimising the morbidity in surviving relatives.     

Improving transfer from the intensive care unit: the development, implementation and evaluation of a brochure based on Knowles' Adult Learning Theory

This paper describes the development, implementation and evaluation of a transfer brochure for family members of patients in an intensive care unit (ICU) to improve patient transfer to a general ward. When family members fail to understand information, they respond in ways that affect patient recovery. The brochure was designed within Knowles' Adult Learning Theory framework and developed using a multidisciplinary team. A mixed design was used to collect data from families and nurses. Results indicate that the brochure helped nurses to address the individual family's issues during transfer from ICU. Furthermore, 95% of nurses (n = 33) recommended its introduction for all future transfers. Family members (n = 82) who received the brochure as part of their transfer were significantly more satisfied with all aspects of transfer than those who experienced ad hoc transfer methods (n = 80). These results provide strong support for Knowles' Adult Learning Theory as an educational foundation for adult learning.     

Opportunities for quality improvement in bereavement care at a children's hospital: assessment of interdisciplinary staff perspectives

This study examined the current state of bereavement care at a university-based children's hospital from the perspective of the interdisciplinary staff. In all, 60 staff members from multiple disciplines participated in in-depth interviews. In at least two-thirds of the interviews, issues related to the bereavement experience of both staff and families emerged and were consistently identified. Themes included: disparities in bereavement care based on relationship factors; logistics of time and space; geographical distances; the different cultures and languages of families; continuity in family follow-up; needs of siblings and other family members; staff communication, cooperation, and care coordination; staff suffering; and education, mentoring, and support for staff. This evidence-based needs assessment furnishes an empirical basis for the design and implementation of bereavement services for both families and staff. It can serve as a template for evaluation at other children's hospitals and thus contribute to the sound and creative development of the field of pediatric palliative care.     

The perceptions and experiences of nurses and bereaved families towards bereavement care in an oncology unit

Background

Existing bereavement literature focuses on the care provided in palliative care units or community settings. However, nurses in oncology units are in a unique position to provide bereavement care, which is care extended to the families after the death of cancer patients. This study aimed to explore the perceptions and experiences of bereavement care among nurses and bereaved family members in an oncology unit in Hong Kong.

Method

Semi-structured qualitative interviews were carried out in one oncology unit in Hong Kong with 15 nurses and ten bereaved family members. All interviews were audiotaped, transcribed verbatim and analysed by using qualitative content analysis.

Results

Among the bereaved family members, three themes emerged: being informed, being supported and being with the patient before and after the patient’s death. Among the oncology nurses, however, the three identified themes were: elements of good bereavement care, emotional response in providing bereavement care and educational needs in the provision of bereavement care. Comparatively, the experiences of and the opinions on bereavement care identified by the bereaved were more specific than those identified by the nurses.

Conclusion

The findings revealed that there is room for improvement in current bereavement care. Family members were committed to patient care and they expressed their need for more involvement in the patient care, which could result in a positive impact on their grief and loss experience. Nurses were committed to quality care, and they expressed their need for more training on knowledge, skills and attitudes to improve their readiness and competencies in the provision of bereavement care.     

Interprofessional collaboration and family member involvement in intensive care units: emerging themes from a multi-sited ethnography

Abstract

This article presents emerging findings from the first year of a two-year study, which employed ethnographic methods to explore the culture of interprofessional collaboration (IPC) and family member involvement in eight North American intensive care units (ICUs). The study utilized a comparative ethnographic approach – gathering observation, interview and documentary data relating to the behaviors and attitudes of healthcare providers and family members across several sites. In total, 504 hours of ICU-based observational data were gathered over a 12-month period in four ICUs based in two US cities. In addition, 56 semi-structured interviews were undertaken with a range of ICU staff (e.g. nurses, doctors and pharmacists) and family members. Documentary data (e.g. clinical guidelines and unit policies) were also collected to help develop an insight into how the different sites engaged organizationally with IPC and family member involvement. Directed content analysis enabled the identification and categorization of major themes within the data. An interprofessional conceptual framework was utilized to help frame the coding for the analysis. The preliminary findings presented in this paper illuminate a number of issues related to the nature of IPC and family member involvement within an ICU context. These findings are discussed in relation to the wider interprofessional and health services literature.     

Implementing an educational program to improve critical care nurses' enteral nutritional support

BackgroundAlthough international nutrition societies recommend enteral nutrition guidelines for patients in intensive care units (ICUs), large gaps exist between these recommendations and actual clinical practice. Education programs designed to improve nurses' knowledge about enteral nutrition are therefore required. In Korea, there are no educational intervention studies about evidence-based guidelines of enteral nutrition for critically ill patients.ObjectivesWe aimed to evaluate the effects of an education program to improve critical care nurses' perceptions, knowledge, and practices towards providing enteral nutritional support for ICU patients.MethodsA quasi-experimental, one-group study with a pre- and post-test design was conducted from March to April 2015. Nurses (N = 205) were recruited from nine ICUs from four tertiary hospitals in South Korea. The education program comprised two sessions of didactic lectures. Data were collected before (pre-test) and 1 month after (post-test) the education program using questionnaires that addressed nurses' perceptions, knowledge, and practices relating to providing enteral nutritional support for ICU patients.ResultsAfter the program, nurses showed a significant improvement in their perceptions and knowledge of enteral nutrition for ICU patients. There was a significant improvement in inspecting nostrils daily, flushing the feeding tube before administration, providing medication that needs to be crushed correctly, changing feeding sets, and adjusting feeding schedules.ConclusionsThe findings indicate that an enteral nutrition education program could be an effective strategy to increase critical care nurses' support for the critically ill. This education program can be incorporated into hospital education or in-service training for critical care nurses to strengthen their perceptions and knowledge of nutritional support in the ICU. This may improve the clinical outcomes of ICU patients.     

BEREAVEMENT PRACTICES AMONG CALIFORNIA HOSPICES: RESULTS OF A STATEWIDE SURVEY

During 1999-2000, the California Hospice and Palliative Care Association (CHAPCA) surveyed its 160 member hospices regarding bereavement support services. Over 80% of hospices participated, providing information about program content, staff training, and costs incurred by participants. Results revealed that a greater percentage of larger hospices and non-profit hospices offer support groups and workshops than do smaller hospices and for-profit hospices. Volunteers account for almost one quarter of bereavement staff. The professional background of paid staff is varied, with social workers and clergy being most common overall but nurses more common in small hospices. Almost 90% of hospices provide all bereavement support at no charge to the bereaved. Services most likely to be associated with a fee include special support groups, children's programs, and professional counseling to individuals and families.     

Withdrawing and withholding life support in the intensive care unit: a Spanish prospective multi-centre observational study

OBJECTIVE: To determine how frequently life support is withheld or withdrawn from adult critically ill patients, and how physicians and patients families agree on the decision regarding the limitation of life support. DESIGN: Prospective multi-centre cohort study. SETTING: Six adult medical-surgical Spanish intensive care units (ICUs). PATIENTS AND PARTICIPANTS: Three thousand four hundred ninety-eight consecutive patients admitted to six ICUs were enrolled. MEASUREMENTS AND RESULTS: Data collected included age, sex, SAPS II score on admission and within 24 h of the decision to limit treatment, length of ICU stay, outcome at ICU discharge, cause and mode of death, time to death after the decision to withhold or withdraw life support, consultation and agreement with patient's family regarding withholding or withdrawal, and the modalities of therapies withdrawn or withheld. Two hundred twenty-six (6.6%) of 3,498 patients had therapy withheld or withdrawn and 221 of them died in the ICU. Age, SAPS II and length of ICU stay were significantly higher in patients dying patients who had therapy withheld or withdrawn than in patients dying despite active treatment. The proposal to withhold or withdraw life support was initiated by physicians in 210 (92.9%) of 226 patients and by the family in the remaining cases. The patient's family was not involved in the decision to withhold or withdraw life support therapy in 64 (28.3%) of 226 cases. Only 21 (9%) patients had expressed their wish to decline life-prolonging therapy prior to ICU admission. CONCLUSIONS: The withholding and withdrawing of treatment was frequent in critically ill patients and was initiated primarily by physicians.