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2 A comparison of the nurse work environment between perinatal and non-perinatal hospice providers Lisa C Lindley, Mary Lou Fornehed, Sandra J Mixer A perinatal death represents a profound loss for parents (Davies et al, 2005), who increasingly desire to maximise the time they have with their infants (Brosig et al, 2007). Almost a million families experience a birth tragedy each year in the USA (Ventura et al, 2012), which includes miscarriage, ectopic pregnancy, stillbirth, and neonatal death. Perinatal death is defined as death at less than 7 days of age, whereas foetal deaths include those with gestation of 28 weeks or more, up to the time of birth. Perinatal hospice is generally family-centred, comprehensive, and integrative (Rousch et al, 2007; Calhoun, 2010). Perinatal hospice care, also referred to as perinatal palliative care, is delivered by an interdisciplinary team of nurses, obstetricians, paediatricians, social workers, and chaplains (Kilby et al, 2011) in approximately 130 in the USA, or 2% of the total (National Hospice and Palliative Care Organization, 2012; Perinatal Hospice and Palliative Care, 2013). Whereas a traditional hospice team may establish a care plan for a patient who has been diagnosed with a lifelimiting health condition, a perinatal hospice team delivers care for the foetus, infant, mother, and family before, during, and after birth (Sumner et al, 2006; Munson and Leuthner, 2007). A perinatal hospice team, for example, may facilitate the development and execution of a birth plan that outlines the mode and site of delivery, delivery room management, and after-birth care of the mother and infant (D Almeida et al, 2006). A team may also coordinate and provide care after the delivery, especially if the infant goes home, as well as bereavement services later for the parents and family (Williams et al, 2008). Nurses have a unique role in providing perinatal hospice care (Davies et al, 2005). It involves taking physical care of the infant and psychological care of the family to meet their unique needs (Branchett and Stretton, 2012; Friedman and Bloom, 2012). Nurses implement these specialised care roles by providing culturally sensitive Abstract Background: Hospice nurses have a unique role in providing perinatal care, yet little is known about the work environment in which nurses provide care for families and infants at the end of life. Objective: To compare the nurse work environment between perinatal and non-perinatal. Methods: Data from the 2007 US National Home and Hospice Care Survey was used. The sample included 526 US hospice agencies. Comparisons were calculated using the Pearson chi-square and Wald tests. Results: A majority of provided perinatal care (60%). Compared with non-perinatal, the perinatal nurse work environment had a significantly higher proportion of registered nurses (mean 0.87 vs mean 0.79), along with clinical nurse specialists and nurse practitioners to support them (95.6% vs 84.9%). Nurses within perinatal care providers worked in a climate of significantly greater safety (95.6% vs 84.9%) and technology (63.7% vs 47.1%). Conclusions: Understanding the unique perinatal hospice nurse work environment may be essential for advancing knowledge and compassion for mothers and babies at the end of life. Key words: Perinatal hospice l End-of-life care l Nurse work environment l Hospice organisations l Hospice nurse education for the family, so that they understand what to expect prior to the birth of the infant as well as during the post-partum period (Balaguer, et al, 2012; Youngblut and Brooten, 2012). Perinatal hospice nurses may also assist parents with decision making in regards to the trajectory of care for the dying infant and with providing valuable resources for the family, such as social worker assistance. The nurse often prepares the baby for transport, teaches parents to care for their infant, monitors equipment and medications, and assesses respiratory, nutritional, and developmental issues (Das and Leuthner, 2004; Catlin, 2007). Although barriers to delivering nursing care for infants at the end of life have been identified (Kain, 2006), nurses are crucial in ensuring patient-centred care for families and their newborns. Despite the specialist nature of the care delivered by nurses in perinatal hospice, few Lisa C Lindley is Assistant Professor, College of Nursing, University of Tennessee, Knoxville, 1200 Volunteer Blvd, Knoxville, TN , USA; Mary Lou Fornehed is Doctoral Student and Sandra J Mixer is Assistant Professor, College of Nursing, University of Tennessee, Knoxville, USA Correspondence to: Lisa C Lindley llindley@utk.edu International Journal of Palliative Nursing 2013, Vol 19, No

3 Table 1. Conceptual model Hospice characteristics Affiliation Service area Facility size Organisational age Ownership Teaching status Accreditation RN, registered nurse Nursing unit environment RN unit size Patient acuity RN leadership RN support services Nursing unit structure RN proportion RN education RN certification Safety climate Career climate Technology climate studies have examined the nurse work environment, comprising the hospice environment, nursing unit environment, and nursing unit structure. Recent studies have shown that the characteristics of the particular hospice environment, such as ownership, size, affiliation, organisational age, and accreditation, are positively associated with providing care for infants and children (Lindley et al, 2013). Nursing scholars have also reported that the nursing unit environment influences care. Unit size, work complexity, support services, and patient acuity have been positively related to patient outcomes (Baernholdt and Mark, 2009; Bacon and Mark, 2009; Bae et al, 2010). These same studies also reported that patient outcomes were affected by the nursing unit structure, including the proportion of registered nurses (RNs), RN education level, RN certification, and working conditions. Understanding the perinatal hospice nurse work environment is important if we are to advance knowledge and compassion in this area of end-oflife care. Providing information on the state of perinatal care will assist nurses and other clinicians in understanding what importance is placed on perinatal services. In addition, it will provide guidance on where education is needed and who should receive it in order to increase perinatal services. Finally, improving our knowledge of perinatal hospice may benefit clinicians who need to refer patients to perinatal hospice care. Aim The purpose of the study was to compare the nurse work environment between perinatal and non-perinatal hospice providers. Methods Design and sample Data from the 2007 National Home and Hospice Care Survey (NHHCS) was used in a retrospective comparison study. The 2007 NHHCS was used because it provides the most current data available from the Centers for Disease Control and Prevention (CDC), which provides national data on perinatal hospice agencies. A total of 1036 home and hospice agencies participated in the 2007 survey. Sample inclusion criteria were certification by Medicare or Medicaid and state licensure to provide hospice care services. Agencies were excluded if they were a home health agency only, had no RNs on staff, or had missing observations in the data. The final sample for this study comprised 526 agencies that provided hospice services. Ethical considerations Internal Review Board approval for this study was obtained from the University of Tennessee, Knoxville, USA. Data source The NHHCS dataset is a voluntary survey conducted by the CDC. One of the continuing series of nationally representative sample surveys of US home health and hospice agencies, it was first conducted in 1992 and then repeated in 1993, 1994, 1996, 1998, 2000, and, most recently, The survey was designed to provide descriptive information on agencies and their staffs, services, and patients. Data was collected between August 2007 and February 2008 through in-person interviews with agency directors and their designated staffs (CDC, 2007). No patients or families were interviewed directly. Data quality was managed by editing all survey responses for accuracy, consistency, logic, and completeness (CDC, 2007). Measures Three groups of variables were created for the hospice characteristics, nursing unit environment, and nursing unit structure, as recommended by Mark et al (1996) and others (Bacon and Mark, 2009) (Table 1). Hospice characteristics Perinatal care was defined as whether the agency provided maternal and neonatal care to patients. Affiliation was measured categorically as whether were freestanding agencies (e.g. hospitalbased, home health-based, long-term care-based). Using Metropolitan Statistical Area status, service area was categorised as whether delivered care in metropolitan, micropolitan, or rural locations. The facility size variable was operationalised as small size if a hospice had 100 patients per day and large if they had >100 patients per day. The total number of years a hospice had been licensed was the measure for organisational age. Ownership was operationalised 536 International Journal of Palliative Nursing 2013, Vol 19, No 11

4 as whether a hospice reported its profit status as for-profit or other (i.e. private not-for-profit or government). Teaching status was measured as whether the agency was ever used as a clinical training site for students. Accreditation was defined as the agency being accredited by the Joint Commission for Accreditation of Healthcare Organizations. Nursing unit environment RN unit size was defined as the number of full-time equivalent (FTE) RNs on staff per patient. A measure of patient acuity was derived from whether the nurses cared for patients receiving continuous home care. RN leadership was defined as whether the agency s director had a nursing degree. RN support services was measured as whether there was a clinical nurse specialist (CNS) or nurse practitioner on staff. Nursing unit structure RN proportion was calculated as the proportion of RN FTEs divided by the total number of RN and licensed practical nurse FTEs. Whether the nursing unit had RNs with their highest degree as a baccalaureate in nursing was the measure of RN education. RN certification was defined as whether any RNs had any medical specialty certifications. As a proxy measure, safety climate was defined as whether influenza vaccinations were encouraged for nurses. A binary measure of whether a hospice agency provided a career ladder for nurses was created for career climate. Technology climate was operationalised as whether nurses currently used an electronic medical records system. Data analysis The primary aim of the study was to compare the nurse work environment of perinatal and nonperinatal hospice agencies. Descriptive statistics were calculated for the hospice characteristics, nursing unit environment, and nursing unit structure. Additionally, the Pearson chi-square test for differences in proportions and Wald test for difference in means were used to provide comparisons among perinatal and non-perinatal agencies. Survey weights were applied to all analyses to adjust for sampling bias because of the complex nature of the NHHCS survey data. The results are presented in the form of univariate distributions and means. Analyses were conducted using Stata 11.0 (StataCorp). Results Sixty per cent of the sample of 526 hospice agencies provided perinatal care to patients. Table 2. Weighted comparison of the characteristics of the perinatal and non-perinatal (n=526) Variable Perinatal Non-perinatal P-value Affiliation Freestanding 39.6% 67.2% Non-freestanding 60.4% 32.8% 0.001*** Service area Metropolitan 45.7% 77.8% Micropolitan 30.6% 15.4% Rural 23.7% 6.9% 0.001*** Facility size Small 88.9% 81.8% Large 11.1% 18.2% Organisational age 16.1 years 11.7 years 0.005** Ownership For-profit 15.1% 49.5% Non-profit or government 84.9% 50.5% 0.001*** Teaching status 87.5% 68.9% 0.005** Accreditation 37.4% 30.1% **Significant at P ***Significant at P Hospice characteristics Many of the characteristics of the perinatal significantly differed from those of the non-perinatal (Table 2). The perinatal were predominately non-freestanding (e.g. hospital-based, home health-based, longterm care-based) (60.4% vs 32.8%) and operated in metropolitan areas (45.7% vs 77.8%). They were commonly older organisations, which were non-profit or government owned (84.9% vs 50.5%). They were more often teaching agencies (87.5% vs 68.9%). There were no significant differences in facility size or accreditation status. Nursing unit environment Table 3 summarises the nursing unit environment. Perinatal had a significantly larger RN unit size than non-perinatal. Additionally, 22% of perinatal had RN support staff resources in the form of CNSs or nurse practitioners, vs only 11% of non-perinatal. There were no significant differences in patient acuity or RN leadership between perinatal and non-perinatal agencies. Nursing unit structure The variables that defined nursing unit structure are displayed in Table 4. Hospices that provided perinatal care had a significantly higher proportion of RNs on their nursing staff than nonperinatal providers. There was also a difference International Journal of Palliative Nursing 2013, Vol 19, No

5 Table 3. Weighted comparison of nursing unit environment among perinatal and non-perinatal (n=526) Variable Perinatal Non-perinatal P-value RN unit size *** Patient acuity 12.5% 17% RN leadership 71.3% 73% RN support services 21.6% 11% 0.021* *Significant at P ***Significant at P RN, registered nurse Table 4. Weighted comparison of nursing unit structure among perinatal and non-perinatal (n=526) Variable Perinatal Non-perinatal P-value RN proportion *** RN education BSN 90.2% 88.2% 0.64 RN certification 70.1% 61.9% Safety climate 95.6% 84.9% 0.004** Career climate 24.9% 39.1% Technology climate 63.7% 47.1% 0.044* *Significant at P **Significant at P ***Significant at P BSN, Bachelor of Science in Nursing; RN, registered nurse in the safety climate between the hospice types. A significantly higher percentage of perinatal (95.6% vs 84.9%) encouraged influenza vaccinations among their nursing staff. Finally, there was a difference in the technology climate between perinatal and non-perinatal, with a significantly higher percentage of perinatal (63.7% vs 47.1%) having electronic medical records systems. There were no significant differences in RN education, RN certification, or career climate. Discussion This study comparing the nurse work environments of perinatal and non-perinatal hospice agencies was one of the first studies to explore the perinatal work environment. The study found that agencies that provided perinatal hospice care were most often non-freestanding, urban, older, non-profit or government, and teaching facilities. Interestingly, perinatal agencies were typically affiliated with hospitals, home-health, or long-term care organisations, whereas paediatric hospice researchers have reported that most that provide care for children are freestanding agencies (Lindley et al, 2012). An explanation for these contradictory results might relate to the unique health needs of the perinatal population. With advances in medical technology and the ability to detect high-risk pregnancies, specialised obstetric care for mothers and infants is often initiated and monitored in hospitals (Friedman and Bloom, 2012). Women who already have a relationship with an urban acute care institution may transition to the hospital s community-based hospice programme as they progress in their pregnancy. This finding suggests that patients may be able to access urban hospice support services and obstetrical health professionals simultaneously, in order to develop a specific birth plan. It also suggests that, when patients use a hospital s hospice programme, there may be a relatively seamless coordination of the care provided to mothers and their infants from the birth to the death of the infant. Although perinatal hospice may be well-defined and coordinated in urban areas, the findings also reveal that mothers and infants may lack accessible perinatal hospice services in rural locations, which has implications for clinical care and warrants future research into rural perinatal hospice care among hospice providers and recipients. An unexpected finding was that perinatal had significantly more nursing support services than non-perinatal. Given the complexity of perinatal end-of-life care, mothers and infants may have an increased need for the advanced nursing knowledge of CNSs or nurse practitioners in care planning. In end-of-life care, the CNS supports hospice staff nurses by providing clinical expertise in the development, implementation, use, and evaluation of clinical pathways (Gurzick and Kesten, 2010). The CNS is also responsible for disseminating, consulting on, and educating on best care practices among the nursing staff (Ling, 2005), along with delivering emotional care and physical support to patients and their families (Skilbeck and Payne, 2003). Likewise, the role of the nurse practitioner in hospice care is typically to assist the staff nurse with symptom management, patient and family education and counseling, coordination of care, and maintenance of continuity of care (Williams and Sidani, 2001). This combination of skills and knowledge may be critical for these non-traditional hospice patients. Therefore, CNSs and nurse practitioners may contribute to safely and compassionately managing the care of these high acuity, specialty patients and families. Another interesting finding was the safety climate of perinatal. The study showed a safety climate of encouraging perinatal hospice nurses to get their influenza vaccine. Nurses who work among mothers and infants may appreciate their fragile health conditions at the child s end of life. They may be motivated to get the influenza vaccine to keep themselves and their 538 International Journal of Palliative Nursing 2013, Vol 19, No 11

6 patients healthy (Clark et al, 2009). Patient contact may necessitate extra precautions for those who are immunocompromised (Music, 2011). Future research might examine the relationship between safety climate and patient outcomes in perinatal hospice care. Limitations The study has several limitations. First, the data were self-reported by. Although the CDC conducted quality checks on the data, hospice administrators may have been reluctant to report negative information through a government survey. Second, the data were crosssectional rather than longitudinal. Therefore, no causal conclusions can be drawn. Finally, the most recent data available from the CDC were from Given the significant changes in the hospice industry, including the updated 2008 Conditions of Participation (in Medicare and Medicaid), the data may now be less representative. However, this study represents one of the first attempts to explore the nursing work environment using these data. Clearly, there is a need for ongoing systematic data collection and analysis related to understanding the perinatal hospice nurse work environment. Implications Although the perinatal hospice environment continues to evolve, the findings from this research have implications for hospice administrators and clinicians today. As hospice administrators decide whether to provide perinatal hospice care services, they may need to assess their nurse staffing and support services. For example, agencies that lack highly skilled nursing staff may want to evaluate their manpower planning and recruitment strategies for nurses. Having adequate nurse staffing may be an important component of a hospice s ability to provide care to mothers and infants. In addition, may need to assess their nursing resources. Having a CNS or nurse practitioner on staff may assist in coordinating care across disciplines through good communication and provide important clinical nursing expertise through a well-formulated and documented plan of care for a high-acuity specialty patient population such as perinatal hospice patients (Wool, 2013). Hospice administrators may need to evaluate the impact of these resources for their overall patient population and understand the cost benefit analysis of adding such resources. The perinatal hospice environment can present challenges for nurses who must interact with grieving families in an emotional and spiritual manner that is seen as compassionate and supportive. Nurses without preparation for this end-of-life care role sometimes find themselves uncomfortable with the idea of death in this patient population, as well as with the need to withdraw perinatal life-sustaining care (Youngblut and Brooten, 2012). Nurses can prepare themselves to provide perinatal hospice care through further education such as through the End-of-Life Nursing Education Consortium ( by preparing for Certification for Perinatal Loss Care / National Board for Certification of Hospice and Palliative Nurses ( through formal debriefing, and through the use of mentors. In addition to providing holistic, compassionate care for mothers and infants, nurses may also need to engage in self-care including ensuring adequate sleep, nutrition, and exercise and nurturing holistic mental health and spirituality (Morgan, 2009). Thus, empowering hospice nurses may be important for providing care to the perinatal patient population. Conclusion In summary, understanding the unique perinatal hospice nurse work environment is essential for advancing knowledge and compassion in this area of end-of-life care. This study showed that perinatal have a higher proportion of registered nurses, along with CNSs and nurse practitioners to support them, and a climate of safety and technology. With this knowledge, hospice administrators and nurses can collaborate to secure the resources needed and improve the nursing work environment to care for this population, thus influencing patient and family outcomes and nurses wellbeing. Bacon CT, Mark B (2009) Organizational effects on patient satisfaction in hospital medical-surgical units. J Nurs Adm 39(5): Bae SH, Mark B, Fried B (2010) Use of temporary nurses and nurse and patient safety outcomes in acute care hospital units. Health Care Manage Rev 35(4): Baernholdt M, Mark BA (2009) The nurse work environment, job satisfaction and turnover rates in rural and urban nursing units. J Nurs Manag 17(8): Balaguer A, Martín-Ancel A, Ortigoza-Escobar D, Escribano J, Argemi J (2012) The model of palliative care in the perinatal setting: a review of the literature. BMC Pediatr 12: 25 Branchett K, Stretton J (2012) Neonatal palliative and end of life care: what parents want from professionals. J Neonatal Nurs 18(2): 40 4 Brosig CL, Pierucci RL, Kupst MJ, Leuthner SR (2007) Infant end-of-life care: the parents perspective. J Perinatol 27(8): Calhoun BC (2010) Perinatal hospice: compassionate and comprehensive care for families with lethal prenatal diagnosis. Linacre Q 77(2): perinatal have a higher proportion of registered nurses, along with clinical nurse specialists and nurse practitioners to support them, and a climate of safety and technology. International Journal of Palliative Nursing 2013, Vol 19, No

7 Catlin A (2007) Home care for the high-risk neonate: success or failure depends on home health nurse funding and availability. Home Healthc Nurse 25(2): Centers for Disease Control and Prevention (2007) National Home and Hospice Care Survey. (accessed 4 November 2013) Clark SJ, Cowan AE, Wortley PM (2009) Influenza vaccination attitudes and practices among US registered nurses. Am J Infect Control 37(7): D Almeida M, Hume RF, Lathrop A, Njoku A, Calhoun BC (2006) Perinatal hospice: family-centered care of the fetus with a lethal condition. J Am Phys Surg 11(2): Das UG, Leuthner SR (2004) Preparing the neonate for transport. Pediatr Clin North Am 51(3): Davies V, Gledhill J, McFadyen A, Whitlow B, Economides D (2005) Psychological outcome in women undergoing termination of pregnancy for ultrasound-detected fetal anomaly in the first and second trimesters: a pilot study. Ultrasound Obstet Gynecol 25(4): Friedman TC, Bloom AM (2012) When death precedes birth: experience of a palliative care team on a labor and delivery unit. J Palliat Med 15(3): Gurzick M, Kesten KS (2010) The impact of clinical nurse specialists on clinical pathways in the application of evidence-based practice. J Prof Nurs 26(1): 42 8 Kain VJ (2006) Palliative care delivery in the NICU: what barriers do neonatal nurses face? Neonatal Netw 25(6): Kilby MD, Pretlove SJ, Bedford Russell AR (2011) Multidisciplinary palliative care in unborn and newborn babies. BMJ 342: d1808 Lindley LC, Mark BA, Daniel Lee SY, Domino M, Song MK, Jacobson Vann J (2013) Factors associated with the provision of hospice care for children. J Pain Symptom Manage 45(4): Ling J (2005) Palliative care in Irish nursing homes: the work of community clinical nurse specialists. Int J Palliat Nurs 11(7): Mark BA, Sayler J, Smith CS (1996) A theoretical model for nursing systems outcomes research. Nurs Adm Q 20(4): Morgan D (2009) Caring for dying children: assessing the needs of the pediatric palliative care nurse. Pediatr Nurs 35(2): Munson D, Leuthner SR (2007) Palliative care for the family carrying a fetus with a life-limiting diagnosis. Pediatr Clin North Am 54(5): Music T (2011) Protecting patients, protecting healthcare workers: a review of the role of influenza vaccination. Int Nurs Rev 59(2): National Hospice and Palliative Care Organization (2012) NHPCO Facts and Figures: Hospice Care in America Edition. Statistics_Research/2012_Facts_Figures.pdf (accessed 6 November 2013) Perinatal Hospice and Palliative Care (2013) Perinatal hospice/palliative care programs and support. (accessed 5 November 2013) Roush A, Sullivan P, Cooper R, McBride JW (2007) Perinatal hospice. Newborn Infant Nurs Rev 7(4): Skilbeck J, Payne S (2003) Emotional support and the role of Clinical Nurse Specialists in palliative care. J Adv Nurs 43(5): Sumner LH, Kavanaugh K, Moro T (2006) Extending palliative care into pregnancy and the immediate newborn period: state of the practice of perinatal palliative care. J Perinat Neonat Nurs 20(1): Ventura SJ, Curtin SC, Abma JC, Henshaw SK (2012) Estimated pregnancy rates and rates of pregnancy outcomes for the United States, nchs/data/nvsr/nvsr60/nvsr60_07.pdf (accessed 5 November 2013) Williams D, Sidani S (2001) An analysis of the nurse practitioner role in palliative care. Can J Nurs Leadersh 14(4): 13 9 Williams C, Munson D, Zupancic J, Kirpalani H (2008) Supporting bereaved parents: practical steps in providing compassionate perinatal and neonatal end-of-life care. A North American perspective. Sem Fetal Neonatal Med 13(5): Wool C (2013) State of the science on perinatal palliative care. J Obstet Gynecol Neonatal Nurs 42(3): Youngblut JM, Brooten D (2012) Perinatal and pediatric issues in palliative and end-of-life care from the 2011 Summit on the Science of Compassion. Nurs Outlook 60(6): International Journal of Palliative Nursing 2013, Vol 19, No 11

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