“We Take Care of People;What Happens to Us Afterwards?”: Home Health Aides and Bereavement Care in Hospice

Abstract

After a hospice patient dies, hospice providers can experience a variety of emotional responses. While work has been done on social workers’ and nurses’ reactions to patient death, home health aides (HHAs) have been overlooked. To address this gap, we conducted focus groups and individual qualitative interviews with 14 hospice HHAs. Questions covered HHAs’ grief responses and how they coped with grief. We found a high burden of grief reactions; many HHAs often developed very close patient relationships. HHAs also noted that they often started working with new patients almost immediately after a death, leaving little time to process the loss. However, HHAs found support from other HHAs, their supervisors, as well as family, friends, and spiritual practices to be helpful in coping with their grief. Future work should enhance support to HHAs around patient loss; for example, grief support may be embedded into hospice team activities.

Keywords

hospice grief home health aides caregivers bereavement

Introduction

Hospice provides holistic care for people with a life-limiting illness or injury; to be eligible for hospice care, a patient life expectancy of 6 months or less is required. Medicare is the primary payer for hospice services in the United States (National Hospice and Palliative Care Organization, 2012). The availability of hospice support has expanded greatly in the last two decades; in 2011, 44.6% of all deaths in the United States were in hospice (National Hospice and Palliative Care Organization, 2012). Hospice care is usually provided by multidisciplinary teams of physicians, nurses, social workers, chaplains, and home health aides (HHAs; National Hospice and Palliative Care Organization, 2012). Typically, a family member serves as the primary caregiver and works with this multidisciplinary hospice care teams to support the terminally ill individual.

Hospice providers, in turn, are well positioned to meet the needs of bereaved family members, as hospices are required by Medicare to provide bereavement services to all family members for at least a year after the hospice patient dies (National Hospice and Palliative Care Organization, 2012). Bereavement services typically offered include telephone calls, condolence letters, mailed informational materials, home visits by bereavement staff, grief workshop, grief support groups, and individual counseling (Barry et al., 2012; Demmer, 2003; Foliart, Clausen, & Siljestrom, 2001; National Hospice and Palliative Care Organization, 2010). A sizable minority of family members eligible for bereavement services will develop bereavement-related mental health disorders. Complicated Grief (CG) and depression are among the most common mental health disorders postloss; CG is characterized by prolonged, impairing grief symptoms, while depression is characterized by low mood and loss of interest in usual activities (American Psychiatric Association, 2013). About 13% of family members of deceased hospice patients experience depression and approximately 11% experience CG (Allen, Haley, Small, Schonwetter, & McMillan, 2013; Thomas, Hudson, Trauer, Remedios, & Clarke, 2014). CG and depression are both associated with a number of negative outcomes, including hypertension, sleep impairment, and suicidal ideation (Stroebe, Schut, & Stroebe, 2007). Data from a recent national survey found that 92% of U.S. hospice provide screening for depression, 97% provide screening for CG, and 79% provide either group or individual psychotherapy (Ghesquiere et al., 2015), but little data exist on the details of hospice practices in this arena.

Hospice provider bereavement care practices may also be impacted by their own responses to patient death. After the hospice patient dies, both family members and providers can have a variety of emotional responses. Work has been done on hospice social workers’ and nurses’ reactions to patient death (Eakes, 1990; Gerow et al., 2010; Maeve, 1998; Papadatou, 2009; Spencer, 1994; Wisekal, 2015), particularly in pediatric settings (Papadatou, Martinson, & Chung, 2001; Rashotte, Fothergill Bourbonnais, & Chamberlain, 1997). However, none of these studies included HHAs as the focus of the analyses, despite their essential role on the hospice team.

Our study begins to address this gap in the literature by gathering data from hospice HHAs. The study aims were:

To better understand hospice providers’ existing screening and treatment practices with family members of deceased hospice family members who are experiencing symptoms of bereavement-related mental health disorders.

To understand Hospice HHAs’ reactions to patient death, how they coped with those reactions, and how these reactions may impact interactions with family members.

To explore interest in future support and training among Home Health in working with family members and around their own reactions to patient death.

Study results could provide indications of the experiences of an underrepresented provider group and new information on bereavement services provided to family members in hospice. Ultimately, improving existing care could reduce the high emotional and health burden associated with bereavement in both providers and family members.

Methods

Cross-sectional focus groups and individual qualitative interviews were conducted with HHAs and hospice administrators at a medium-sized hospice in a large urban area. The hospice serves a diverse family member population throughout the urban area; approximately 100 patients are served each month (G. Kaplan, personal communication, November 6, 2015). Institutional review board approval was obtained through the Hunter College institutional review board before data collection began.

The study utilized convenience sampling. All (approximately 20) HHAs currently employed at the hospice were eligible for participation. Focus groups were conducted as part of a self-care day scheduled by the hospice; a group discussing the project topics was scheduled alongside other activities, such as massage, meditation, and arts and crafts. A research assistant took de-identified notes on the primary themes identified during focus groups.

At the end of the group, the principal investigator (PI) passed around a sign-up sheet where HHAs could provide contact information, if they were interested in doing an in-person interview. HHAs were told to place the sheet into a covered box (whether or not they completed it) so that interest in participation remained confidential. The PI then contacted HHAs within 2 weeks to schedule an individual interview. It was emphasized throughout the process that participation was completely voluntary. Interviews occurred both over the phone and in person (depending on HHA preference) and were audiorecorded with HHA consent. The PI led all focus groups and conducted all interviews. Interviews were transcribed using a transcription service.

Examples of questions included:

When a patient of yours passes away, what kind of feelings arise?

How do you cope with this loss?

When you see a bereaved family member who is having a difficult time with their loss, what happens in your interaction with them?

If you were to receive training in working with bereaved family members, what kind of training would you be interested in?

Two raters (the PI and a graduate research assistant) then coded each interview in Atlas.ti to ensure reliability, and any disparities were reviewed, discussed, and consensus reached. Using open coding, the PI created a codebook to identify the common themes in each interview, based on line-by-line coding of the transcripts (Creswell, 2007). Codes were grouped together into larger groups, as themes emerged. In analyzing data, the team followed the steps in thematic analysis, as outlined by Braun and Clarke (2006), which consisted of becoming familiar with the data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and creating an analytic narrative.

Results

A total of 14 HHAs participated in focus groups, and 7 (50%) were reached for individual interviews. Focus groups lasted about 1 hour and each individual interview lasted approximately 30 minutes.

Hospice Provider Practices With Family Members

Cases of complicated grief or depression

When asked whether they had seen family members with complicated grief or depression, no HHAs were able to identify specific cases. They remembered instances where family members were especially sad or angry, but not particular symptoms of mental health issues. As one noted “They react in different ways,” and

some families, they’re able to accept it, and they will talk. Some families will just—you know, they will be sad and then they will just want to step out and deal with the nurse and try to figure out things … I have people that will be in denial, like they don’t … accept it … [and others] … they’ll feel better, they’ll feel like they’re at peace now.

The lack of identification of CG and depression is likely due to the fact that HHAs have limited interactions with family members after the death, both because this is not a part of their prescribed role and because they so quickly have to start working with another patient. As one HHA said, at the time of the death, “sometimes that's the last I see them. That's it.” No HHAs had ever received any education or training in complicated grief or depression.

Relationships with family members

Yet, though, no specific cases CG and depression were identified, HHAs describe their interactions and relationships with family members. Many formed close relationships with family members during the hospice patients’ care, and the end of this relationship after the death could be painful, on both sides. As one HHA said: “It's hard to be close to the family members like that. It's hard … you're going to get attached to the family member. And you're hurting yourself too [when the relationship ends].” Family members can also get attached. One HHA who shared that after one woman’s husband died in hospice, she told the HHA “the hardest thing besides her husband dying was that she was going to miss me.” When possible and when the relationship was particularly close, HHAs attempted to stay in touch, within the boundaries of their role and many responsibilities. As one noted

I'm with them for a long period of time … We keep in touch sometimes. They even want me to come back and visit them. But I never did … I have other works to do, and I have kids. But we keep in touch.

HHAs reported that some family members wanted more contact than was possible for them, such as frequent visits or phone calls.

HHA support to family members

HHAs reported using a few different approaches with grieving family members, including listening, using spirituality, giving space to let the family member show what they needed, comforting with a hug, and listening. Regarding listening, one HHA noted “Like this lady she needs somebody to talk to her. Not to grieve with her, but she needs someone to talk to her.” Regarding giving space and comforting, another HHA said:

Sometimes it’s more like we just step back a little bit, and then when they’re ready you talk to them … Sometimes it’s best if you let them handle it themselves, than to barge in … The strategy that I use now is just wait. You know? Wait till they … you know, whatever they have to do, if it’s religious wise, or whatever they have to say or whatever. When they come now looking for us, we stand and we’re waiting, then we approach them. And then we’ll say I’m sorry for your loss, and then we start talking to them.

Many of the HHAs interviewed had strongly held Christian beliefs, and when the family members were also religious, sometimes HHAs would attempt to provide comfort through spirituality. HHAs would offer prayers for the family when attending church, for example, “Discussing shared belief systems was also used to offer reassurance to family members.” As one HHA described telling a family member after the death “I said, God is in control of everything.” Many HHAs reported discussing with family members that the patients are now in a better place, and that the family members will be with them again someday.

Other HHAs tried to support family members by encouraging them to express emotions. One HHA noted:

But you know what I said to [some of them]? I said [to them], “If you want to cry, cry.” … I said, “Don’t keep it in.” I said, “If you want to shout, shout …don’t keep it in.” I said, “Anything you want to … just do it right now … don’t keep it in.”

Knowing how best to express support could sometimes be difficult, though. As one HHA reflected: “I’ve been working five years in this and I still don’t have the words to tell them. I just say I’m sorry, but I don’t have, like, everything’s going to be okay, because it’s not.” In those cases, hugs and other noninvasive forms of physical touch might be used. As one HHA shared: “Everybody can use a hug. Sometimes you don’t say nothing, you just touch their hand because you don’t know what to say. It works sometimes.”

Hospice Home Health Reactions and Coping After Patient Death

Emotional responses after the death

HHAs reported a range of emotional reactions to the patient death, including sadness, shock, numbness grief, and relief. Many noted that because they spent so much time with the patient (often working with them 4 to 8 hours a day, every day), they had a closer relationship than with the patient than did other hospice providers. As one HHA described:

I find when people are at death's door, that's when they're the most honest, and the most vulnerable, and they're telling you about their lives and sometimes their mistakes and their regrets. And these are things that I don’t think you can speak to anybody else about, because they told you that in some sort of confidence.

This close connection could make the loss particularly painful, and many HHAs described feeling strong feelings of grief when patients died.

Coping through accepting death

At the same time, because death is so common in their work, most HHAs reported getting used to such losses, over time. As one noted, “We wouldn’t want to wish it on anybody, but it’s something, after a while, you get used to it.” Accepting the reality and inevitability of death was reported by many. As one HHA said

It’s just a part of life … It’s something you just get used to, and then you just accept it. And some people can’t accept it, but working in this field … you just accept it and just … feel sorry for the loss. But that’s about it.

Some feared that this level of acceptance made them feel emotionally shutdown, and that it could be difficult to express emotions about other things in their lives.

Coping through making meaning

In addition to adjusting to the commonality of loss, HHAs reported coping with their feelings about the loss by putting by making a larger sense of meaning about it, either in a spiritual sense or considering how the person was no longer suffering. As one said: “It's better for them, less pain. No further suffering. Especially when they're not eating and not breathing properly, it's hard for you to just sit there looking at them.”

Coping through social support

Support from others was also commonly used to cope with the loss. Often HHAs would discuss their feelings about the loss with family members or with religious leaders, but support from other HHAs was reported most frequently. As one HHA shared: “We see other hospice workers … [and they] … will say ‘Oh, I’m sorry to hear that your patient died,’ and we will talk and … we will hug each other.” This sort of informal support was greatly valued by most HHAs interviewed. One said during the focus group that “If we didn’t have each other, we would be done.”

Barriers to coping

Many noted, however, that the nature of their work prevented them from having any time to mourn or process patient deaths. All mentioned that they were usually asked to start working with a new patient immediately after the death; sometimes on the same day. The high number of patients needing care meant that HHAs were usually in immediate demand. As one stated:

Now we are like … the patient pass away today, and this afternoon they say can you cover that case. And I feel like, no, because I still feel that emptiness because I was supposed to be with that patient. But I can’t go because he passed. So I need my time [to process].

Taking time off from work to process feelings of loss could affect salary or vacation time, however, so HHAs rarely took this time.

Yet, despite these challenges, HHAs did not feel that their grief affected how they interacted with family members during or after the hospice patient’s death. The only reported exception to this were cases where patient loss also brought up reminders of HHAs own losses. The impact of these reminders could be both positive and negative. On the one hand, it made HHAs more sympathetic to family members and their experiences and allowed them to express compassion. Some HHAs reported sharing their loss experiences with family members in a way that facilitated support for family members. On the other hand, patient loss could bring up strong grief feelings about personal losses. One HHA said: “I had my dad and then my granddad … and when they both passed, then it was a little harder, because when I … see [the patients’ it’s like I’m seeing my family members.” In these cases, HHAs reported that they had to try to temporarily set aside their grief so that they could focus on their work.

Interest in Support and Training

Training in working with family members

HHAs expressed a strong interest in more support in working with bereaved family members. None had received formal training in how to do this, but instead had learned about how to interact with family members entirely through experience on the job. One shared a specific example of learning about different religious practices after a death during the course of her work:

I learned from a Jewish family. I had a young lady … when she passed, I would spend time with his mother and his sister, and they would teach me … they would show me. And then when she passed away, I asked if I could come for shiva. When I came, I came to her husband first, and he was sitting down, and he gently took my hand and he said, “Bend down … you can't stand above me.” So every time I go to shiva, I know what not to do.

Group support

HHAs also expressed a desire for more support, both formally from the hospice and informally through social connection. They very much liked the grief-support group that was led by the PI and wanted this to continue regularly. As one noted “Sometimes you have stuff on your mind, and you just need a group … Something like that would be very good, especially when you see persons dying so often.” Another added “It would be nice to talk to other workers … and everybody share a little bit of their experience. Because then it makes you feel like you’re not alone.”

In addition, social time organized by the hospice to connect outside of work was suggested:

Like if the company had more- you know, like family time, like if we were able to bond with each other more. Like … once in a while … we have a little get-together. Maybe like a little picnic for the workers … [Now] we only see each other in-service, or in meetings … It will be nice if we had a little more time.

Self-care

Encouragement of self-care on an organizational level was desired as well. One said that she’d like to know more about “how to deal with stress ourselves. Because if we stress it’s kind of hard to be understanding to anybody.” As one put it about her experience after a patient dies: “We take care of people; what happens to us afterwards?” The self-care day that the hospice organized before the project began was very appreciated by all respondents, and all wished that it would occur more often.

Organizational changes

HHAs also requested better communication from the hospice around patient death.

Our company—we know that they are busy. But sometimes, if they just give us a phone call, just don’t call and say “Your patient expired.” … Just say, “I know what it is to lose your patient.” … Because no matter what, it’s a life gone.

More sensitive sharing of this information would be very helpful, HHAs noted.

HHAs also requested having a little more time between patients, after a death “If they know this is your permanent patient, then they could say, you know what, maybe … They could probably give you a little time for yourself.” This also included more opportunity to interact with families after the death, in order to better support family members:

Maybe it would be saying a person I want to ask especially at the time the person dies. Did my mom say anything? Was she in pain? In your mind, those are questions that's there for all of us. So I think that even if it's just for a period of a few days to give a family member a chance to ask if there are any questions. Not so much for us, but maybe there is some kind of way we can help them.

Other recommendations on an organizational level included a desire for opportunities to take classes for professional development and advancement, including scholarships.

Discussion

Our focus groups and interviews with HHAs indicated that they have a unique role on the hospice team, characterized by relationships with patients and family members that can be very close, but which are also limited by time and other responsibilities. Grief is a common experience in HHAs but is rarely formally acknowledged. HHA grief could be labeled as “disenfranchised grief,” which is any grief that occurs when one experiences a loss that is different from that which is typically acknowledged by society. Such losses are not publicly mourned or openly recognized (Doka, 2008). Studies with other types of hospice staff have found that unresolved disenfranchised grief can affect factors outside of work (e.g., personal relationships, emotions, feelings of worth, eating habits; Dougherty et al., 2009; Wenzel, Shaha, Klimmek, & Krumm, 2011) and can be a cause of burnout and compassion fatigue (Wakefield, 2000). Burnout is defined as a negative psychological experience that is a reaction of workers to job-related stress, and includes a cluster of physical, emotional, and interactional symptoms, including emotional exhaustion, a sense of lacking personal accomplishment, and depersonalization (Fauri, 1978). Compassion fatigue is a form of burnout and manifests itself as physical, emotional, and spiritual exhaustion; it often occurs when compassion satisfaction (the fulfillment from helping others and positive collegial relationships in one’s work) is low (Figley, 1995). Acknowledging HHAs’ unique role on an organizational level, through some flexibility after the patient death or the opportunity for more interactions with family members, may be a helpful first step in acknowledging disenfranchised grief and its consequences.

HHAs appear to experience other reactions to hospice patient death that are similar to other hospice professionals, such as social workers’ and nurses’ (Eakes, 1990; Maeve, 1998; Papadatou et al., 2001; Papadatou, 2009; Rashotte et al., 1997; Spencer, 1994; Wakefield, 2000; Wisekal, 2015). These providers have also reported that patient death reminds them of their own losses and to experience feelings of grief and numbness over patient loss (Wlodarczyk, 2013). Coping techniques used, such as trying to make meaning out of the death, are also similar to approaches used by other hospice providers (Wlodarczyk, 2013). This implies that interventions to support other types of hospice workers may apply to HHAs as well (Wlodarczyk, 2013).

HHAs could use more formal support to process their grief and the general stress of their work. Ongoing grief groups could be instituted, for example, or grief support could be embedded into hospice team activities. Integration of brief interventions into hospice for providers could also be useful; one study evaluated a single session of group music intervention among 68 hospice employees; the intervention included writing a song around patient death and writing a message to deceased patients. Compared with a control group, those in the music intervention showed a significant decline in a measure of burden around personal sacrifice. Although there were no differences in burnout, compassion fatigue, or perceived work environment on a 30-day follow-up, participants reported finding the group helpful (Wlodarczyk, 2013). Self-care techniques could also be encouraged. One study (Carter, Dyer, & Mikan, 2007) piloted a brief behavioral sleep intervention for hospice nurses in two 1-hour sessions held in a group setting on-site at the hospice, and found some improvements in sleep and depressive symptoms.

As HHAs experience in supporting family members is entirely self-taught, more formal training in bereavement care could be instituted within hospice settings. A brief training in bereavement care for CG and depression has been piloted for general practitioners in primary care settings, for example, and patients of trained doctors showed greater improvements in CG symptoms and a greater number of mental health referrals than nontrained doctors (Guldin, Vedsted, Jensen, Olesen, & Zachariae, 2013). Another study developed a four-day in-service training for community-based pediatric palliative care service providers on bereavement care, and identified high acceptability and reports of positive outcomes in the workplace (Mackenzie & MacCallam, 2009). Such trainings could be adapted for hospice HHAs.

Limitations of this study include its sample selection. Not all HHAs employed at the partner hospice agreed to participate in the study. Those who refused or were unreachable may have had very different experiences than those who participated. Moreover, though generalizability is not a goal of qualitative research, transferability can be (Seale, 1999). Transferability involves consideration of whether the data could be applied to other situations. The study sample was made up of a very distinct group from a single hospice in a large urban area, and their experiences may not be easily transferred to other populations. Quite different findings may have been identified in other settings. These limitations may impact the transferability and credibility of the findings.

Future research could attempt to replicate these findings outside of a single urban hospice, and with larger numbers of HHAs. Findings may inform large-scale surveys of HHA experiences. This future work could also compare the experiences of HHAs to other hospice workers. Moreover, research could formally evaluate support programs for hospice providers, examine the effectiveness of support to HHAs around patient loss, and provide formal training around bereavement care, particularly for family members with bereavement-related mental health disorders.

Conclusions

Conceptual models of other providers’ grief over patient loss encompass some of the HHA experiences we identified. For example, Maeve (1998) has written about the idea of “embodiment” in nursing care, in which nurses coexperience both the joys and suffering of patients’ heath experiences, and ways that nurses connection with patients gave dimension to the nurses’ own lives. In some cases, HHAs described a similar depth of connection with hospice patients. Similarly, Gerow et al. (2010) have identified ways that nurses incorporated their spiritual worldviews into reactions to patient death, just as many HHAs did.

Moreover, more general theories of bereavement, such as Stroebe and Schut’s (1999) Duel Process Model, can be applied to HHA grief. This model conceptualizes grief as a dynamic process, in which the bereaved person naturally oscillates between loss-focused activities (such as expressions of sadness) and restoration activities (such as focusing on other areas of life and coping with changes postloss). HHAs described both the pain of losing patients and discussed ways that they distracted from grief. At the same time, there may be unique aspects of HHA grief, such as the length and number of contacts with patients and families, and the resulting depth of relationships could be further considered in these models.

The current study represents a first attempt to understand HHA experiences and practices around bereavement. HHA represent a unique and important part of the hospice care team, and they require further attention. Training, clinical research, and conceptual development around HHA grief could all be explored in future work.

Footnotes

Acknowledgments

The authors thank all the staff and participants at Compassionate Care Hospice for their partnership on this project.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was funded by a Professional Staff Congress of CUNY Research Award, Award # 68359-00 46.

Author Biographies

Angela Ghesquiere is a program manager at the Brookdale Center for Healthy Aging, Hunter College, City University of New York (CUNY). She is a geriatric mental health services researcher with a focus on increasing service access for bereavement-related mental health disorders.

Ariunsanaa Bagaajav is a second year doctoral student in the social welfare program at the Silberman School of Social Work, Hunter College, CUNY. Her current research interests include elder abuse and health services access, particularly in her home country of Mongolia.

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