- Email: [email protected]
Meeting the Needs of Bereaved Families
Judith Cohen, RN, BSN, MSN
Meeting the Needs of Bereaved Fa miIies nurses to adequately care for bereaved families.
C
aring for families experiencing the loss of a child is devastating, not only for the family, but also for obstetrical and neonatal nurses. Nurses are often uncomfortable and stressed when caring for bereaved families as a result of a lack of education, knowledge and skills. A standard of care exists that nurses should adhere to when caring for bereaved families. It’s critical that nurses follow this standard; failing to do so can cause serious psychological effects and consequences if patients and families don’t initiate the grieving process. This deficit could have profound effects on their coping and adaptation in future pregnancies and loss. A gap in the nursing literature exists regarding the critical needs of grieving families and nurses’ lack of preparation in caring for them. We need to raise awareness regarding the educational needs and support of Judith Cohen, RN, B S N , MSN, is a staff nurse in the labor and delivery unit at N o d w e s t Medical Center in Margate, FL, and a Resolve Through Sharing Counselor.
WORKING WITH GRIEF Working in obstetrics is usually known as the happy part of the hospital. When a pregnancy results in a stillborn, ectopic, miscarriage or neonatal death, this horrific, unexpected event is stressful for the family as well as for health care professionals. As a labor and delivery nurse for more than 22 years, I have observed patterns of behavior and phenomena among nurses in five different institutions in the U.S.And some telling observations can be made:
A resistance from the nurses to care for patients experiencing pregnancy loss is present and exists. One or two nurses, who have additional knowledge and training in perinatal bereavement are consistently assigned to these patients. Many nurses state that they simply didn’t know what to say or what to do when providing care for bereaved families Registered nurses typically don’t receive any education on perinatal bereavement in their undergraduate nursing programs. When polling more than 100 OB and neonatal nurses in one facility, I found none who had received such training. Also, they weren’t given any bereavement
training during orientation for OB or neonatal units Even with training, most nurses are uncomfortable in this role. After teaching a class on perinatal bereavement to more than 100 nurses, I found the majority of nurses were only “somewhat” comfortable in providing care for grieving families While guidelines exist that delineate the expected actions of nurses when caring for grieving families (Hauth & Merentstein, 1997), it appears that a knowledge and skills deficit exists despite the fact that during the past decades health care professionals have acquired an abundance of knowledge regarding the needs of families who have experienced pregnancy loss (Dent, Condon, Blair, & Fleming, 1996). These families grieve for their baby and the loss of an entire lifetime with the child. The process of grieving and
loss often takes tremendous time to resolve and heal-and the time required is usually unique for each individual. As health care professionals, we have an obligation to help families by initiating the grieving process during this difficult time.
AWHONN Lifelines
11
LEARNING TO GRIEVE Nurses play an important role as a patient advocate by listening to the family and anticipating their needs. We can also offer positive choices and help the family with decision making, as well as help them regain a sense of control so that they can acknowledge and accept their loss. Rituals that have worked their way into the standard of care include providing mementos or keepsakes for families, such as bracelets worn by the infant, footprints, pictures or locks of hair (Kowalski, 1996). Par-
given mementos as a token of remembrance. Additionally, Rousseau and Fierens (1994) found that nearly half of all moms (45.5 percent) delivering a stillborn were dissatisfied with caregiver attitudes. The relative risk of mothers’ dissatisfaction was significantly reduced if positive attitudes and support were given by the care givers. Hence, a need exists for additional nursing education to provide critical support for grieving mothers and families. Yet few institutions seem to follow through on something as simple as providing adequate support to grieving Nurse managers and educators should families.Dent et allocate money, time and education to (1996), in a retrospective study of 11 health disassist novice and experienced nurses tricts, collected data on bereaved parents’ percepto adequately care for bereaved tions of care following families, and support them in the the death of a child. They assessed how care process of facilitating families’ was coordinated between transition through their time of loss. community agencies and evaluated the preparedness of caregivers in meeting the needs of bereaved famients can also be encouraged to see lies. Among their findings, the and hold their baby; nurses can researchers reported that: encourage and respect the parents’ need to spend time alone with the Less than half of parents were given baby and their family. Information on mementos of the dead child burial options, autopsy and grieving Only 13 percent of parents received should also be provided. grief support from their general practitioners FAMILY PERCEPTIONS How grieving families perceive the Only 8 percent of their care providers had been given special traincare provided to them by their nurses ing in helping bereaved families is directly affected by the caring attitude and support given to them The authors of the study went on to following the loss of a child. Providsuggest that all professional groups ing nurses with additional education could benefit from knowledge and and knowledge in this area could training on caring for bereaved increase their skills and comfort levels families. in caring for bereaved families. NURSING PERSPECTIVES Radestad, Nordin, Steinbeck and One of the most difficult situations Sjogren (1996) found that certain nurses face is dealing activities could decrease long-term with and caring for maternal anxiety following a child lost to stillbirth. These interventions bereaved families. Hallgrimsdottir include initiating delivery as soon as (2000) assessed possible after the diagnosis is made as well as encouraging the mother to emergency nurses’ percepspend as much time as possible with tions and experience the infant. Again, parents should be
12
AWHONN Lifelines
of caring for families of critically ill
or injured patients and bereaved families. The study revealed that only a minority of participants felt they had adequate education to meet the needs of families. In that study, 72 percent found it distressing to deal with grieving families and 48 percent felt they didn’t have access to strong emotional support at work. Additionally, in this study, nurses said the most difficult aspect of caring for families was caring for bereaved families (80 percent). Most respondents (72 percent) said they felt they couldn’t meet such needs because of time constraints and staffing shortages. The study supported the need for additional staff support in this area, as well as additional nursing education. Also, Kaunonen, Tarkka, Hautamaki and Paunonen (2000) described how nursing staff experienced the death of a child and how that affected their care for families. In their research, they demonstrated that staff indeed experience grief, feelings of injustice, a sense of one’s own limited resources and relief. Supportive education of grieving families helped staff increase their ability to care for them. The authors concluded that hospital staff support families but they also identified their learning needs as supporters. This study was specific to the experiences of perinatal nurses in dealing with pregnancy loss and confirms that additional education increased the nurses’ ability to care for grieving families.
NURSING EDUCATION Gardner (1999) identified the needs and responses of nurses and midwives regarding their feelings encountered and coping mechanisms used when caring for families experiencing pregnancy loss. Common needs identified by caregivers to adequately care for bereaved families included:
Volume 5, issue 1
Increased knowledge Mentored experiences Communication skills Personal support Additionally, Wong and Lee (2000) found that when faced with an infant loss and family grieving, nurses reported experiencing a sense of helplessness, frustration and guilt. Nurses also reported that they found it difficult to communicate with bereaved relatives and were not provided the support they needed for caring regarding issues relating to death and dying. Deficiencies in nursing education were identified as an area needing improvement to help nurses in caring for bereaved families. In a review of the literature on the nurse’s role and potential in providing emotional care, Mead, Bower and Gask (1997) found nurses’ confidence was much lower when dealing with situations such as bereavement. She suggests that mental health skills be provided to all health care professionals to increase their ability to provide the emotional support needed for grieving families. She concluded that there is a growing gap between the demands made on nurses and the competence and skills they have to meet this demand. GRIEF INTO ACTION Grieving families want and need support from staff to help them cope with grief during this difficult time. Nurses lack the education and skills to adequately care for bereaved families. From the perspective of both nurses and families, it would be beneficial for nurses and other health care professionals to have additional knowledge and skills on perinatal bereavement to meet the needs of grieving families. In conclusion, I believe an imperative exists for nurses to receive adequate knowledge, support and training through ongoing educational h-services on perinatal bereavement to acquire the skills to adequately care for bereaved families. These
skills should be included in annual competencies for nurses. Nursing educators could include education on caring for the bereaved in nursing curriculums to adequately prepare nurses to care for bereaved families. Nurse managers and educators should allocate money, time and education to assist novice and experienced nurses to adequately care for bereaved families, and support them in the process of facilitating families’ transition through their time of loss.
+
References Dent, A., Condon, L., Blair, L., & Fleming, P. (1996).A study of bereavement care after a sudden and unexpected death. Archives of Diseases in Childhood, 74(6),552-526. Gardner, J. (1999).Perinatal death: Uncovering the needs of midwives and nurses in the United States, England and Japan. Journal of Transcultural Nursing, 10(2),120-130. Hallgrimsdottir, E. (2000).Accident and emergency nurses’ perceptions and experiences of caring for families. Journal of Clinical Nursing, 9(4),611-619. Hauth, J., & Merenstein, G. (1997). Guidelines for perinatal care. (rev. ed.). Washington, DC: American Academy of Pediatrics and the American College of Obstetricians and Gynecologists. Kaunonen, M., Tarkka, M., Hautamaki, K., & Paunonen, M. (2000). The staffs’ experience of the death of a child and of supporting the family. International Nursing Research, 47(l ) , 46-52. Kowalski, K. (1996).Loss and bereavement: Psychological, sociological, spiritual and ontological perspectives. In K. Simpson & P. Creehan (Eds.), Perinatal Nursing (pp. 221-286). Philadelphia: Lippincott-Raven. Mead, N., Bower, P., & Gask, L. (1997).Emotional problems in primary care. Journal of Advanced Nursing, 26(5), 879-890. Radestad, I., Nordin, C., Steinbeck, G., & Sjogren, B. (1996).Still-
birth is no longer managed as a movement: A nationwide study in Sweden. Birth, 23(4), 209215. Rousseau, P., & Fierens, R. (1994). Bereavement evolution in mothers and families after perinatal death. Journal of Gynecology, Obsterical Biology and Reproduction, 23(2), 166-174. Wong, F., & Lee, W. (2000).A phenomenological study of early nursing experience in Hong Kong. Journal of Advanced Nursing, 3 1(6), 1509-15 17.
Nurses will find additional resources for helping families grieve through these organizations:
Thecorn-
kiendr.Inc.
(708) 990-0010 www.compassionatefriends.org
m-senricer (formerly known as Resolve Through Sharing) (800)362-9567
sHARE:RegMncy&lnfant bSSSUupport.Inc.
(314) 947-56164 www.nationalshareoffice.com
SlDS A l l i i , Inc. (800) 221-SIDS www.cyfc.umn.edu/ childredsids.html
Direct all editorial inquiries to: Carolyn Davis Cockey Executive Editor 804 W. Wildwood Avenue Fort Wayne, IN 46807 Direct: 219-744-3899 Toll-free: 877-744-3899 24-hour Fax: 219-744-3899 Email: [email protected]
AWHONN Lifelines
13
Meeting the Needs of Bereaved Fa miIies nurses to adequately care for bereaved families.
C
aring for families experiencing the loss of a child is devastating, not only for the family, but also for obstetrical and neonatal nurses. Nurses are often uncomfortable and stressed when caring for bereaved families as a result of a lack of education, knowledge and skills. A standard of care exists that nurses should adhere to when caring for bereaved families. It’s critical that nurses follow this standard; failing to do so can cause serious psychological effects and consequences if patients and families don’t initiate the grieving process. This deficit could have profound effects on their coping and adaptation in future pregnancies and loss. A gap in the nursing literature exists regarding the critical needs of grieving families and nurses’ lack of preparation in caring for them. We need to raise awareness regarding the educational needs and support of Judith Cohen, RN, B S N , MSN, is a staff nurse in the labor and delivery unit at N o d w e s t Medical Center in Margate, FL, and a Resolve Through Sharing Counselor.
WORKING WITH GRIEF Working in obstetrics is usually known as the happy part of the hospital. When a pregnancy results in a stillborn, ectopic, miscarriage or neonatal death, this horrific, unexpected event is stressful for the family as well as for health care professionals. As a labor and delivery nurse for more than 22 years, I have observed patterns of behavior and phenomena among nurses in five different institutions in the U.S.And some telling observations can be made:
A resistance from the nurses to care for patients experiencing pregnancy loss is present and exists. One or two nurses, who have additional knowledge and training in perinatal bereavement are consistently assigned to these patients. Many nurses state that they simply didn’t know what to say or what to do when providing care for bereaved families Registered nurses typically don’t receive any education on perinatal bereavement in their undergraduate nursing programs. When polling more than 100 OB and neonatal nurses in one facility, I found none who had received such training. Also, they weren’t given any bereavement
training during orientation for OB or neonatal units Even with training, most nurses are uncomfortable in this role. After teaching a class on perinatal bereavement to more than 100 nurses, I found the majority of nurses were only “somewhat” comfortable in providing care for grieving families While guidelines exist that delineate the expected actions of nurses when caring for grieving families (Hauth & Merentstein, 1997), it appears that a knowledge and skills deficit exists despite the fact that during the past decades health care professionals have acquired an abundance of knowledge regarding the needs of families who have experienced pregnancy loss (Dent, Condon, Blair, & Fleming, 1996). These families grieve for their baby and the loss of an entire lifetime with the child. The process of grieving and
loss often takes tremendous time to resolve and heal-and the time required is usually unique for each individual. As health care professionals, we have an obligation to help families by initiating the grieving process during this difficult time.
AWHONN Lifelines
11
LEARNING TO GRIEVE Nurses play an important role as a patient advocate by listening to the family and anticipating their needs. We can also offer positive choices and help the family with decision making, as well as help them regain a sense of control so that they can acknowledge and accept their loss. Rituals that have worked their way into the standard of care include providing mementos or keepsakes for families, such as bracelets worn by the infant, footprints, pictures or locks of hair (Kowalski, 1996). Par-
given mementos as a token of remembrance. Additionally, Rousseau and Fierens (1994) found that nearly half of all moms (45.5 percent) delivering a stillborn were dissatisfied with caregiver attitudes. The relative risk of mothers’ dissatisfaction was significantly reduced if positive attitudes and support were given by the care givers. Hence, a need exists for additional nursing education to provide critical support for grieving mothers and families. Yet few institutions seem to follow through on something as simple as providing adequate support to grieving Nurse managers and educators should families.Dent et allocate money, time and education to (1996), in a retrospective study of 11 health disassist novice and experienced nurses tricts, collected data on bereaved parents’ percepto adequately care for bereaved tions of care following families, and support them in the the death of a child. They assessed how care process of facilitating families’ was coordinated between transition through their time of loss. community agencies and evaluated the preparedness of caregivers in meeting the needs of bereaved famients can also be encouraged to see lies. Among their findings, the and hold their baby; nurses can researchers reported that: encourage and respect the parents’ need to spend time alone with the Less than half of parents were given baby and their family. Information on mementos of the dead child burial options, autopsy and grieving Only 13 percent of parents received should also be provided. grief support from their general practitioners FAMILY PERCEPTIONS How grieving families perceive the Only 8 percent of their care providers had been given special traincare provided to them by their nurses ing in helping bereaved families is directly affected by the caring attitude and support given to them The authors of the study went on to following the loss of a child. Providsuggest that all professional groups ing nurses with additional education could benefit from knowledge and and knowledge in this area could training on caring for bereaved increase their skills and comfort levels families. in caring for bereaved families. NURSING PERSPECTIVES Radestad, Nordin, Steinbeck and One of the most difficult situations Sjogren (1996) found that certain nurses face is dealing activities could decrease long-term with and caring for maternal anxiety following a child lost to stillbirth. These interventions bereaved families. Hallgrimsdottir include initiating delivery as soon as (2000) assessed possible after the diagnosis is made as well as encouraging the mother to emergency nurses’ percepspend as much time as possible with tions and experience the infant. Again, parents should be
12
AWHONN Lifelines
of caring for families of critically ill
or injured patients and bereaved families. The study revealed that only a minority of participants felt they had adequate education to meet the needs of families. In that study, 72 percent found it distressing to deal with grieving families and 48 percent felt they didn’t have access to strong emotional support at work. Additionally, in this study, nurses said the most difficult aspect of caring for families was caring for bereaved families (80 percent). Most respondents (72 percent) said they felt they couldn’t meet such needs because of time constraints and staffing shortages. The study supported the need for additional staff support in this area, as well as additional nursing education. Also, Kaunonen, Tarkka, Hautamaki and Paunonen (2000) described how nursing staff experienced the death of a child and how that affected their care for families. In their research, they demonstrated that staff indeed experience grief, feelings of injustice, a sense of one’s own limited resources and relief. Supportive education of grieving families helped staff increase their ability to care for them. The authors concluded that hospital staff support families but they also identified their learning needs as supporters. This study was specific to the experiences of perinatal nurses in dealing with pregnancy loss and confirms that additional education increased the nurses’ ability to care for grieving families.
NURSING EDUCATION Gardner (1999) identified the needs and responses of nurses and midwives regarding their feelings encountered and coping mechanisms used when caring for families experiencing pregnancy loss. Common needs identified by caregivers to adequately care for bereaved families included:
Volume 5, issue 1
Increased knowledge Mentored experiences Communication skills Personal support Additionally, Wong and Lee (2000) found that when faced with an infant loss and family grieving, nurses reported experiencing a sense of helplessness, frustration and guilt. Nurses also reported that they found it difficult to communicate with bereaved relatives and were not provided the support they needed for caring regarding issues relating to death and dying. Deficiencies in nursing education were identified as an area needing improvement to help nurses in caring for bereaved families. In a review of the literature on the nurse’s role and potential in providing emotional care, Mead, Bower and Gask (1997) found nurses’ confidence was much lower when dealing with situations such as bereavement. She suggests that mental health skills be provided to all health care professionals to increase their ability to provide the emotional support needed for grieving families. She concluded that there is a growing gap between the demands made on nurses and the competence and skills they have to meet this demand. GRIEF INTO ACTION Grieving families want and need support from staff to help them cope with grief during this difficult time. Nurses lack the education and skills to adequately care for bereaved families. From the perspective of both nurses and families, it would be beneficial for nurses and other health care professionals to have additional knowledge and skills on perinatal bereavement to meet the needs of grieving families. In conclusion, I believe an imperative exists for nurses to receive adequate knowledge, support and training through ongoing educational h-services on perinatal bereavement to acquire the skills to adequately care for bereaved families. These
skills should be included in annual competencies for nurses. Nursing educators could include education on caring for the bereaved in nursing curriculums to adequately prepare nurses to care for bereaved families. Nurse managers and educators should allocate money, time and education to assist novice and experienced nurses to adequately care for bereaved families, and support them in the process of facilitating families’ transition through their time of loss.
+
References Dent, A., Condon, L., Blair, L., & Fleming, P. (1996).A study of bereavement care after a sudden and unexpected death. Archives of Diseases in Childhood, 74(6),552-526. Gardner, J. (1999).Perinatal death: Uncovering the needs of midwives and nurses in the United States, England and Japan. Journal of Transcultural Nursing, 10(2),120-130. Hallgrimsdottir, E. (2000).Accident and emergency nurses’ perceptions and experiences of caring for families. Journal of Clinical Nursing, 9(4),611-619. Hauth, J., & Merenstein, G. (1997). Guidelines for perinatal care. (rev. ed.). Washington, DC: American Academy of Pediatrics and the American College of Obstetricians and Gynecologists. Kaunonen, M., Tarkka, M., Hautamaki, K., & Paunonen, M. (2000). The staffs’ experience of the death of a child and of supporting the family. International Nursing Research, 47(l ) , 46-52. Kowalski, K. (1996).Loss and bereavement: Psychological, sociological, spiritual and ontological perspectives. In K. Simpson & P. Creehan (Eds.), Perinatal Nursing (pp. 221-286). Philadelphia: Lippincott-Raven. Mead, N., Bower, P., & Gask, L. (1997).Emotional problems in primary care. Journal of Advanced Nursing, 26(5), 879-890. Radestad, I., Nordin, C., Steinbeck, G., & Sjogren, B. (1996).Still-
birth is no longer managed as a movement: A nationwide study in Sweden. Birth, 23(4), 209215. Rousseau, P., & Fierens, R. (1994). Bereavement evolution in mothers and families after perinatal death. Journal of Gynecology, Obsterical Biology and Reproduction, 23(2), 166-174. Wong, F., & Lee, W. (2000).A phenomenological study of early nursing experience in Hong Kong. Journal of Advanced Nursing, 3 1(6), 1509-15 17.
Nurses will find additional resources for helping families grieve through these organizations:
Thecorn-
kiendr.Inc.
(708) 990-0010 www.compassionatefriends.org
m-senricer (formerly known as Resolve Through Sharing) (800)362-9567
sHARE:RegMncy&lnfant bSSSUupport.Inc.
(314) 947-56164 www.nationalshareoffice.com
SlDS A l l i i , Inc. (800) 221-SIDS www.cyfc.umn.edu/ childredsids.html
Direct all editorial inquiries to: Carolyn Davis Cockey Executive Editor 804 W. Wildwood Avenue Fort Wayne, IN 46807 Direct: 219-744-3899 Toll-free: 877-744-3899 24-hour Fax: 219-744-3899 Email: [email protected]
AWHONN Lifelines
13