Abstract
Background
Bereavement support is a core component of palliative care for adults and children, as well as for bereaved family members (Leitlinienprogramm Onkologie, 2020; Psychosoziale Arbeitsgemeinschaft in der pädiatrischen Onkologie und Hämatologie, 2019; Radbruch & SA, 2010). Following the death of a child, family members often require professional support to help them cope with their grief (Barrera et al., 2007; Cacciatore, 2021; Dyregrov, 2004). However, families’ social networks are often unprepared to provide sufficient support. The literature suggests that bereaved family members tend to have a greater risk of mortality (Li et al., 2003; Rostila, Saarela & Kawachi, 2012a; 2012b) and a higher incidence of mental disorders such as complicated grief (Meert et al., 2010; Meert et al., 2011; Wijngaards-de Meij et al., 2008) and anxiety and depression (Kreicbergs et al., 2004). This also applies to children, although they often present with different grieving behaviour than older persons (Auman, 2007; Kirwin & Hamrin, 2005). To prevent these effects and to find good ways of dealing with grief, individuals and groups may access various support options.
Research has shown that individual bereavement support (e.g., peer groups, individual support meetings) can best address family members’ needs (Aoun et al., 2018; Aoun et al., 2017; Downar et al., 2020; Muller & Klaschik, 2001; Schoonover et al., 2022). However, grief is very individual, and not everyone benefits from a support group (DiMarco et al., 2001): for example, one study found that only the most stressed mothers benefited significantly from parental groups involving parents with similar experiences (Murphy et al., 1998). Following bereavement, parents are challenged to develop a new sense of normality in everyday life. Hospital and trauma service staff can positively influence this grieving process (Oliver et al., 2001). Furthermore, online support services may generate significant improvements in post-traumatic stress, grief, depression and overall mental health (Kersting et al., 2011). Furthermore, compared to the loss of other relatives, providing support for parents losing a child is a special situation that poses specific challenges for counsellors: In recent studies, caregivers described the fear of disappointing parents because they felt unable to fulfil their needs, which increased pressure on themselves. They also felt tension caused by dyadic dimensions: 1) maintaining hope in anticipatory grief vs. realistic outlook, 2) achieving emotional closeness vs. emotional distance, and 3) exploring emotions versus containing emotions (Kochen et al., 2022). In case of accompanied parents, caregivers found that parents struggled with the paradox of not being able to protect their child, contrary to their parental instincts, as they were unable to save them in this situation. A particular challenge for the caregivers was the relief and normalisation of this inner conflict and these feelings. The main difference from bereavement support in other contexts is the more intensive focus on parents' own understanding of their role. To achieve this, it is seen as helpful to allow parents to experience how they feel about being a parent (Kochen et al., 2021).While many studies have examined the impact of bereavement support on family members, less research has explored the perspectives of bereavement counsellors on bereavement support and the organisation and structure of such services.
For access to palliative care and support services (e.g. bereavement services) for paediatric patients and families, certain barriers were described by Haines et al. (2018): 1) lack of adequate funding at the policy/payment level, 2) lack in healthcare system, including staff and access issues in different organisations, 3) difficulties integrating the offered care in existing care models at the organisational level and 4) individuals, with a focus on patient, family and provider characteristics. Another barrier for healthcare provision from professionals’ perspectives was the unpredictability of parental feelings and reactions (Kochen et al., 2021). Because parents cope with grief by switching between different strategies (Darlington et al., 2018; Stroebe, M. & Schut, 1999; Verberne et al., 2019), feelings can manifest themselves in many forms (e.g. fear, anger, sadness).
In Germany, there are various options for grieving people to receive advice and support: Support offered voluntarily by welfare and church organisations, hospice services, and volunteers as well as support offered by professional trained bereavement counsellors or psychotherapists. Only psychotherapy is systematically refinanced by health care insurance providers. That is why volunteer services lack financing for their work. However, according to the Federal Chamber of Psychotherapists, patients in need of psychotherapy usually only receive an initial appointment within six weeks after their initial request. Subsequently, only about half of all patients in need of treatment get a seamless transition into psychotherapy. Around 40 percent of those seeking help wait at least three to nine months for treatment to begin (Bundes Psychotherapeuten Kammer (BPtK), 2021). In addition, not every grief situation requires long-term psychotherapeutic support (Stroebe, Margaret, Schut, & Stroebe, 2007), but rather episodic needs-based support with the implementation of rituals (Nikkola et al., 2013).
In Lower Saxony, the “Bereavement Network Lower Saxony” (BNLS) project, founded in 2021, provides professional bereavement support to families grieving their life-limiting ill or already deceased children. The BNLS is externally funded and offers its services free of charge, independent of families’ place of residence or financial situation. The concept of the network is to support the affected family members (parents, siblings, grandparents, and other close relatives) in their (anticipatory) grief. Bereavement support is provided by the network’s bereavement counsellors before the death of children with life-limiting illnesses and after the funeral. In addition, the support offered is also aimed at families who have experienced bereavement due an accident or suicide of a child. The network’s concept includes professional, resource-orientated bereavement support for the families, initially for the first year of grieving. Families can decide how many of the 10 counselling appointments they would like to attend in the first year of grieving. Moreover, possibilities for self-help such as attending a bereavement group, bereavement support for siblings or attending a support group together with the family members are offered.
All bereavement counsellors of the BNLS are psychologists, therapists, educators or specialists in nursing or medicine, and completed a further training in professional bereavement support. The acquisition of professional bereavement counsellors is done in collaboration with the Federal Association of Bereavement Support e.V. (BVT), which has a nationwide network of professionally trained bereavement counsellors (at least 200 teaching units of 45 minutes each). The bereavement counsellors work for the network on a fee basis.
The present study aimed at examining BNLS bereavement counsellors’ experiences providing bereavement support and their perceptions of the overall organisation of the BNLS.
Methods
Design
The present study described counsellors’ experiences providing bereavement support within the BNLS, on the basis of interviews with bereavement counsellors. In accordance with the explorative nature of the research, a qualitative method was applied. The Ethics Committee of Hannover Medical School granted ethical approval (No. 10211_BO_K_2022, 18.02.2022).
Sampling and Recruitment
Following a convenience sampling strategy, a recruitment letter was sent to all 45 BNLS bereavement counsellors in May 2022. Only counsellors who had not yet provided bereavement support in the network were excluded. Counsellors’ email addresses were provided by the BNLS.
A total of 15 bereavement counsellors agreed to participate in the study. Each potential participant received a study information sheet and a socio-demographic questionnaire. Interview dates were arranged individually with participants and interviews took place between mid-June and mid-August 2022. Written informed consent was provided by all participants prior to study participation.
Study Material
A workshop was organised with two coordinators, two counsellors of the BNLS, and three researchers to determine the topics and guiding questions for the interview guide. Subsequently, the interview guide was developed, tested and consented within the research team. It included 15 major topics, referring to work experiences (from the point of initial contact to the end of accompaniment), the network organisation, current challenges and suggestions for improving bereavement support within the BNLS (see supplementary file “Interview guide of interviews with bereavement counsellors”).
Data Collection
Participants of the Semi-structured interviews (n = 15).
Interview Guide Topics for the Semi-structured interviews.
Data Analysis
Code Tree.
Results
In total, 12 semi-structured interviews with 15 participants were conducted. One interview was arranged as a group interview with four bereavement counsellors, who wished to participate as a team. The number of female participants was 13, and participants’ average age was 49.2 years (range: 35–61). Interviews lasted 37–53 minutes.
Work Experiences with Affected People
Process of Support
Bereavement counsellors described different ways of establishing initial contact with affected families: (a) via the BNLS, (b) via their personal websites and contacts and (c) via medical staff. Contact is made through the coordinator or the [BNLS] project leader. Families contact the bereavement network or are referred to the bereavement network. (Transcript 4, 4–5, female counsellor) At the moment, I am in contact with people I know, including families who are already receiving treatment here at the hospital. So, either they know about the offer already and come to me or they are sent by the palliative care unit. (Transcript 7, 4–5, female counsellor)
Particularly in rural areas, there are challenges in reaching affected families due to a lack of awareness and networking. This is reflected in a minor number of support cases. Of course, I would really like it if you could also get cases via the network [here]. That’s not the case [here]. […] I live in a rural area, so it’s really difficult to establish that here. I’m all alone here from the network. (Transcript 1, 172-177, female counsellor)
Following the initial contact, most counsellors described a similar process of social anamnesis, followed by conversations with individual family members to clarify their personal needs. I start with a basic social anamnesis so that I can first see who I am dealing with, in what context and with what needs. Most of the time there are also siblings. Then there is also an exchange about this and then the disease often becomes the topic. (Transcript 7, 18–20, female counsellor)
Counsellors often experienced their first contact with family members as very emotional, as this was when family members opened up about their loss and pain. They are in a state of emergency and for many families it is not easy to let anyone else in. (Transcript 4, 17–18, female counsellor)
To help these families, counsellors had to create a trusting relationship from the start. They used a variety of strategies to achieve this. First, they listened to family members without judgement and expressed sympathy for their pain, facing the challenge of expressing emotional closeness while protecting themselves and maintaining a professional distance. By listening… empathically. I think that being able to listen is one of the most important qualities in bereavement support. So, I say it’s not so good if you go in there, give good advice and immediately impose something. (Transcript 4, 23–25, female counsellor)
Furthermore, it was very important for many counsellors that the families chose the meeting place. Some families preferred the cosy environment of their own home, while others were happy to have conversations in a neutral space (e.g., the counsellor’s office). Three bereavement counsellors also offered to meet in a place that symbolised family members’ connection to their deceased child (e.g., the grave). It is always a question of whether they would rather have me come to their home or whether they would rather do it here in our office. (Transcript 12, 67–69, female counsellor)
Barriers in Supporting Bereaved Parents
Counsellors also noticed differences in families’ grieving processes, depending on the time that had elapsed since the life-limiting diagnosis or death of the child, as well as differences depending on the diagnosis or cause of death. That is very, very different. When it comes to handicapped children or severely handicapped children, it is not necessarily a time when the end is already foreseeable, but it is more about the fact that it is life-limiting and with other palliative diseases such as cancer or severe metabolic diseases, where it is clear that someone does not have that much longer. There it is usually later, because it is less foreseeable. (Transcript 2, 26–30, female counsellor)
This unpredictability of parental feelings and reactions, which can be connected to both inter- and intra-family peculiarities, represents a particular barrier in bereavement support for parents. It turned out to be important for the interviewees to acknowledge the parental feelings and to respond to the paradox of the parental desire to protect their own child and to normalise the feelings that arise. I think important questions are [..] in the beginning it’s more about surviving at all. […] at some point it becomes relatively important to hear that: “I’m normal. The way I feel is not an illness. It’s okay the way I am and I’m allowed to be like this.” (Transcript 11, 40-43, female counsellor) Some bereavement counsellors also noted special topics and questions that frequently arose, such as treatment options, saying goodbye or organising a funeral, unfulfilled hopes, prospects of future change and the integration of grief into everyday life. It is important for the mother to talk about what is no longer and what will no longer be. [Talking about] The future takes up a large part of the time. Especially when anniversaries are approaching […]. During the lesson we look at: Okay, what can you do, how can you stabilise yourself, who can stand by you? (Transcript 5, 39–42, female counsellor)
Some counsellors describe that these topics can also be a challenge for themselves, as the death of a child by suicide or an accident, for example, is not an everyday event for the counsellor and can lead to insecurities in dealing with the affected person. I have a lot of experience, but […] this was a new encounter for me, too and I thought: What am I supposed to say to this mum? (Transcript 5, 22-24, female counsellor)
All Bereavement counsellors used various materials and symbols to help families deal with their grief and show them possibilities for staying connected with their deceased child. So, in my last family we sewed little hearts out of the girl’s T-shirt and […] the girl got one of them in her hand […] and they also sewed lots of little hearts that went into the siblings’ pockets and backpacks. Simply as a sign that they are still connected to each other. (Transcript 3, 80–84, female counsellor)
Benefit from Support Provided
Counsellors noticed various reactions and changes in families’ behaviour that suggested that their methods and conversations were effective in providing support. Nine counsellors received direct reports from families indicating that the support sessions left them feeling better. Counsellors also observed that families came to participate more in social life, seeing friends and engaging in group activities. Furthermore, they noticed that parents' (mental) health improved over time, allowing them to return to work. When people come back to life like this. When everyday life comes back a little bit. So, when we arrange steps like this. When we can talk about work again, or about re-habilitation, or about holidays, or about nice things that they have done (Transcript 1, 89–92, female counsellor)
Fourteen counsellors observed that families were able to open up more to their friends over time. If families felt emotionally stable after a few months of support sessions, they often made a decision, in collaboration with their counsellor, to end the bereavement support. However, most counsellors expressed to families that they would be available to talk to them again at any point in the future, should they require further support. If I have the feeling that the person I’m supporting only makes the appointments to meet with me somehow, or so that the appointment can continue to take place, because it has simply become such an institution, then this is the very latest time to leave. But it’s also when I see that grief has found its place. And I’m not gone. I always say that the support was also over a longer period of time and that the families still have the opportunity to get in touch. (Transcript 7, 62–64, female counsellor)
Attitudes and Approaches
All bereavement counsellors felt that it was particularly important to focus on family members’ individual needs. Thus, they modified their conversations according to various factors, such as family composition, children’s age, previous experiences and current problems. I am someone who asks a lot of questions, who is interested. Who is interested, who doesn’t pretend to be anything, who doesn’t have any tips on board if they aren’t asked for, and who says that I can support a lot, but they are the boss and specify what they need as a family. And also, who needs what in the family. That I am then available for the whole family. (Transcript 1, 33–38, female counsellor)
When bereavement counsellors felt that they were unable to meet families’ needs, they addressed this with them directly and tried to find another way to help. Some found it necessary to refer family members to other institutions or bereavement groups. So, if I have the feeling that the atmosphere is not right or that maybe there is something they are not addressing, then I bring it up cautiously and say: do you think this is the right thing for you or could you imagine that it would work better with someone else or should we look again to see if a bereavement group would be better for you? (Transcript 8, 110–114, female counsellor)
Bereavement counsellors focused on the whole person and the whole family, using a comprehensive, resource-oriented approach. Above all, I try to accompany them in a systemic approach or in a systemic idea: in the end, they are the ones who know best what they need and how to find a solution for their grief. […] to convey this very resource-oriented view again and again, where their possibilities and resources lie, or simply to give them impulses. (Transcript 9, 104–111, female counsellor)
However, it was also a challenge for the counsellors if the parents had other mental illnesses that required more extensive therapy and made the actual work of bereavement support more difficult. What can be a challenge is when people, in addition to their grief, are also in very existential situations […], or have a mental illness, such as depression, who are simply traumatised, have a traumatic experience that has not really been dealt with well therapeutically. Then, in my experience, there is a situation where the current loss often brings up something that may not have been dealt with, but was nevertheless kept in a certain calm. And then […] I’m confronted with many other issues at one time. (Transcript 9, 211-222, female counsellor)
In such situations, counsellors interact with other support systems and use their contacts to find, for example, a therapy option for the affected person. I would definitely always use my networks and my possibilities for clients to simply make sure that they get the best possible care. (Transcript 9, 232-235, female counsellor)
At the same time, counsellors distanced themselves personally from the suffering to protect themselves. This once again highlights the challenge of the tension between achieving emotional closeness and maintaining professional (emotional) distance. They have nothing at all to gain if I suffer from it. From a purely cognitive point of view, it’s quite logical. They can’t buy anything at all if I suffer with them. I feel for them, yes. But the suffering… so, creating more suffering is nonsense and I simply don’t want that either. Not even for me. I am so selfish that I say: I should enjoy my work and even in the most difficult situations I should have a feeling of self-worth and self-care. (Transcript 6, 133–136, male counsellor)
All counsellors agreed that families should not have to pay for the bereavement support, themselves, because grief can lead to serious illnesses, and thus bereavement support may be understood as a preventive health measure. Clients who say: ‘No, I can’t afford that.’ And then I see how I can somehow manage it and… to make it possible somehow. That is difficult. Money is always difficult and I have to say that I also find it difficult, because when the body is sick, I take out my health card and go to the doctor, but when the soul hurts, then I have to pay for it. (Transcript 5, 207–209, female counsellor)
Comparison with Volunteer Support
Counsellors compared their work to the bereavement support provided by volunteers (e.g., within hospice services), expressing different views. On the one hand, all counsellors (i.e., both BNLS counsellors and volunteers) had the same tasks and field of activity. So, in my opinion, there are no differences at all. I have been a volunteer myself for years […]. The type of support is the same. The tasks are the same. (Transcript 4, 89–90, female counsellor)
On the other hand, some noted a difference in qualifications. For example, all BNLS counsellors had received professional training within the federal association, and this was not often true for volunteers. Those of us here in the network all have this qualification according to the guidelines of the federal association, which volunteers do not have. I work as a volunteer myself and not all of them have this. I don’t think all volunteers have this intensive exchange either, and that is a big issue, and the training that we have all done also means that we have to deal with our own way of dealing with things. (Transcript 5, 107–110, female counsellor).
Compared to volunteers, BNLS bereavement counsellors spent more time with each family, because they were not providing support in their free time. In addition, counsellors perceived that some volunteers were not sufficiently emotionally detached and developed private relationships with the families they supported. Volunteering is, so to speak, in free time and it would not have been possible for me to invest so much time and I can do it more intensively this way because I can accompany each individual. (Transcript 7, 74–75, female counsellor) So, if you do it professionally, you don’t end up in a situation where you become too close and the contact becomes more friendly. Which I think is more likely to happen in the voluntary sector, which is also what I experience. (Transcript 12, 205–207, female counsellor)
Four BNLS counsellors also emphasised that public perception played a major role in their work, and volunteers tended to be perceived less favourably. Most counsellors felt that support work should be evaluated on the basis of the counsellor’s qualifications, rather than the counsellor’s institution. It also gets away from this strange image, well, it’s just a bit of a leisure activity for retired women who have the time to spare, but to really think about it, and not to make such a big distinction between full-time and voluntary work, but rather to always make the distinction according to what it is like, what the qualifications are like. (Transcript 9, 454–458, female counsellor)
Bereavement Network Organisation
Overall, all counsellors provided positive feedback on BNLS’s organisation and supervision of bereavement support. I think they do it quite well. They are really well organised and try to create offers and also respond to the needs of the individuals. (Transcript 2, 338–340, female counsellor)
As part of their support coordination, BNLS documented cases in an online database. Counsellors considered this a simple and practical process, for accounting purposes. We are of course also required to document our cases and this is also very well solved. This is entered online into a database. I describe the situation and the course of events and then it is sent off and that is the documentation. (Transcript 5, 153–154, female counsellor)
All counsellors also perceived the regular training offered by BNLS positively. However, some noted that they would be more likely to participate in this training if they were offered more choice over the topics and dates, thereby overcoming the barrier of uncertainty about topics that are not often discussed in their own support sessions. The trainings are of course always targeted to the topics of death and grief, or conflicts, and I was able to participate before I even had the case. (Transcript 5, 168–169, female counsellor)
Fixed contact persons at the BNLS (i.e., coordinators) offered support for counsellors, registering their individual wishes and suggestions for overcoming the barriers of the organisational structure in the large scale of support in Lower Saxony. [The coordinator] is available at all times and who really has ideas and who is also very creative in her thinking and who really listens to things first before she says yes or no. (Transcript 8, 445–447, female counsellor) Of course, there is the consultation with our coordinator, whom I think we can simply talk to and describe our sorrow, and then there is the supervision, which I also find good. (Transcript 3, 302–304, female counsellor)
Counsellors described that the BNLS had contact persons and support for public outreach (through, e.g., newspaper articles, trade fair stands, the BNLS website and flyers). In particular, bereavement counsellors working in rural areas were active in promoting their work (and the BNLS) to doctors, communities and support institutions, in order to reach more people and overcome barriers of access. Overall, ten counsellors perceived BNLS’s public relations work as pleasant and meaningful. It’s also a good mixture between sad and happy. I think this kind of communication and public relations always has a certain… playful and relaxed quality and that’s a good thing. (Transcript 8, 212–214, male counsellor)
The BNLS also arranged for counsellors get in touch with each other to share experiences. In urban areas, counsellors were given opportunities to exchange ideas with colleagues in person; whereas in rural areas, such communication tended to take place online. BNLS also offered supervision, bringing counsellors from all over Lower Saxony together online in small groups to exchange interdisciplinary ideas. All counsellors considered this very helpful in overcoming the barrier of having to offer support over a large geographical area and the organisational/individual barrier of interprofessional exchange simultaneously. Team meetings really do take place on a regular basis. So that, even if you don’t have a family for support or something, you still stay involved and the bereavement network doesn’t somehow become more and more distant for you. (Transcript 12, 248–251, female counsellor)
The cases that were discussed in supervisions were consultations that took place within the network. BNLS was partly responsible for initiating these consultations, but it did not do so in all areas. Rather, consultations were also set up through local partnerships and counsellors’ personal websites, especially in rural areas. Well, I live in a very rural area and far away from the action and if the network knew that there was a grieving person looking for someone here in my district, they would certainly contact me, but it’s just not like that. (Transcript 5, 219–220, female counsellor)
Development Opportunities for the Bereavement Network
Public Relations
Bereavement counsellors considered it particularly important that the impact of their support was maintained or increased. They also deemed it important for someone within the organisation to keep track of the counsellors and create more creative impulses through the procurement of materials. I think it’s important that someone from the organisation keeps in touch with all the counsellors to see how the process is going. (Transcript 5, 175–176, female counsellor)
Ten counsellors were unsure of the general level of demand for their support services in the population. Therefore, most of them hoped that the BNLS would become better known, to increase awareness and reach all families in need of consultation. A challenge may always be: How can families be reached again who have such a need. Because your family only accepts such an offer if you are in such a way yourself of a situation and then maybe it’s also random whether you come across it or not. (Transcript 2, 350–352, female counsellor)
Some counsellors recruited colleagues to the BNLS in an attempt to increase staffing in areas and regions that were underserved and thereby overcome the challenge of the availability of support in rural regions. However, the focus remained on qualified training. Well, a lot of people don’t even dare to go into the grief work […] And the other thing is, it’s also a very expensive thing. The trainings that you need, and that I also find right and important, cost a lot of money and not everyone who might then want to do this work afterwards can afford it. (Transcript 3, 369–373, female counsellor)
All interviewees considered it inevitable that the BNLS would become better known through greater use of publicity. Suggestions included campaigns at large events and partnerships with (university) clinics and physicians. Cooperation with other associations was also mentioned as potentially helpful for providing financial support to young people interested in undertaking the training and improving recognition of grief work, in general. Greater awareness would also improve access to support for those affected and thereby remove a barrier that exists for many of those services. But also, in the big public we have to do it differently again. Through events […] in the cities where you could appear where you show yourself. With the health care insurance companies, with the big hospitals, in the university hospital […] that will get around (Transcript 1, 414–418, female counsellor) A very big aim is lobbying for grief work to be recognised as something that is important and supportive. Unfortunately, that is still not the case. (Transcript 4, 198–199, female counsellor)
Financing
Improving recognition of grief work was also mentioned as important for ensuring continued funding for BNLS. In particular, counsellors stressed the need for greater recognition of bereavement support as a preventive measure for mental illness. They believed that this could open up opportunities for cooperation with health insurance providers and represent a first step towards regular promotion of bereavement support as preventive medicine. At the moment it’s based on donations, foundations […] but if no other donors come along, the network cannot exist anymore. (Transcript 5, 200–202, female counsellor) I would also do my utmost to ensure that children […] get not psychiatric. Who then have to go to psychotherapy with a story of grief, which doesn’t belong there. I think this could be discussed with health care insurance providers as a preventive measure. (Transcript 6, 276–278, female counsellor)
Improve (Access to) Support
Counsellors described that such services would also be useful for expanding BNLS’s offerings to more individuals and thereby overcome the barrier of access. In many federal states, there is no comparable project that supports grieving families. Exactly, I’m on the road a lot and I’m also at other congresses and exchange ideas there and we’re often envied for the offer because there isn’t anything like that in other regions of Germany. (Transcript 7, 208–209, female counsellor)
Nine counsellors desired more regular in-person meetings to get to know their colleagues from all over Lower Saxony and to network more closely with them to take better advantage of the network’s benefits and support each other. I think it just takes time… that has to do with the network establishing itself, with people knowing about it. And [knowing] that there is such networking even more clearly within the network, so that you also know who is actually on the road where, regionally. […] to have something like a map. (Transcript 6, 149–156, male counsellor)
Two counsellors expressed a wish for further professional support (e.g., through an external trained contact person) and formal support standards. In addition, many counsellors requested new training topics, in line with their own ideas. To develop a common idea of it. That there might just be more standards, so to speak. In the sense that you say: as a network, you assume that a regular support has maybe 20 hours and is maybe at this and that distance. (Transcript 11, 343–347, female counsellor)
Counsellors also made recommendations for improving documentation. Specifically, they described that a standard questionnaire could provide more precise information about individual needs and difficulties during the support process and reveal areas in which the work could be improved. In terms of the network, it might also be interesting […] to get a more uniform picture… if the questions are then given. (Transcript 5, 157–158, female counsellor)
Self-Care
All counsellors described that they emotionally detached from the topics discussed and the situations experienced in the support sessions, and expressed that they had resources to cope with their work in their private lives. Depending on their personal preferences, counsellors spent their free time engaging in sports, socialising with friends and playing music, as forms of self-care. Now I’m going to do nothing for a week. I have such a good balance with lots of cycling, lots of sport and lots of music. (Transcript 1, 214–215, female counsellor)
Even outside their leisure time, most counsellors sought interprofessional exchange with colleagues or BNLS contact persons and supervisors to help them work through stressful support sessions. Well, I did it through supervision and through the fact that I have a circle of colleagues here that I discuss things again anonymously. (Transcript 11, 237–238, female counsellor)
Discussion
Six main themes emerged from the interviews with bereavement counsellors about their experiences providing support to families of deceased children and their perceptions of the BNLS organisation: (1) counsellors’ experiences working with affected people, (2) counsellors’ attitudes and approaches, (3) counsellors’ comparison of BNLS versus volunteer support, (4) counsellors’ opinions about BNLS, (5) counsellors’ suggestions for improving BNLS and (6) counsellors’ forms of self-care. The first and second themes summarised counsellors’ perceived opportunities associated with their work. The other themes pertained to aspects of the BNLS.
Grief is always an individual process. Therefore, personalised bereavement support (involving, e.g., peer groups or individual support meetings) may best address the needs of grieving family members following the loss of a child (Aoun et al., 2018; Aoun et al., 2017; Downar et al., 2020; Muller & Klaschik, 2001; Schoonover et al., 2022). The experiences of bereavement counsellors underline that personal conversations with family members and general responsiveness to their needs seem to positively impact family members’ social behaviour and health. Although the BNLS offers bereavement support on a large scale for many families in Lower Saxony, the network also manages to respect the individuality of the grieving process. By offering professional bereavement support, the network complements the existing services offered by volunteers and psychotherapists. Although they are involved in the same field of work, there are differences in training and further education. The bereavement supporters in the network, who have completed the major basic qualification certified by the federal association, supplement the offer of voluntary support with professional support, including anticipatory and complicated grief. In contrast to psychotherapy, this support is also targeted to groups of family members instead of single persons and enables episodic support without long waiting times for a place for psychotherapy. In the present study, bereavement counsellors considered their work important for preventing against chronic grief and mental illnesses such as depression. However, they noted that, as their work is not classified as preventive by health care insurance providers, it is not systemically refinanced in Germany. Thus, there is a risk that financial limitations may prevent some potential clients from accessing the service. This risk may be further compounded by the fact that parental grief tends to be lifelong, requiring long-term coping strategies (Arnold & Gemma, 2008; Cacciatore, 2010; Laakso & Paunonen-Ilmonen, 2002). Furthermore, this finding is consistent with some barriers to accessing palliative care services, which identified coverage of services through payment and policy as a key issue. Innovative state models with consistent coverage in the interest of the society as a whole have already been recommended (Haines et al., 2018).
The problems of a lack of financing and various offers of bereavement support can also be observed internationally: In Austria, for example, the Federal Working Group for Bereavement Support (BAT) was founded in 2013 to develop quality criteria for bereavement support. The resulting standardised curriculum sets out minimum standards for the training of bereavement counsellors. These training courses address volunteers in church organisations, hospice and palliative care institutions, as well as working groups in palliative, educational and psychosocial fields (Dachverband Hospiz Österreich, 2023). In the UK, volunteers have played a key role in bereavement support since the hospice movement in the 1960s. There is a variety of basic and advanced courses for counsellors to enable them to work with those affected. Almost all hospitals with palliative care units as well as inpatient and outpatient hospice services in the UK offer bereavement support by volunteers (Relf, 1998). Dangel translated and adapted the British guidelines for paediatric palliative care in Poland (Dangel T & Karawacki, 1999). In Poland’s first children’s hospice in Warsaw, for example, bereavement support for parents and siblings is offered in addition to (pain) therapy for children. All hospice services are offered free of charge to those affected. Funding is mainly provided by donations (73%) (Friedrichsdorf S & Zernikow, 2002; Hare, 1999).
Even if the counsellors interviewed in our study did not comment on other systems, it can be inferred that care structures with professional counsellors are also being established in other countries to complement the voluntary work in order to ensure care. This demonstrates the transferability of the BNLS concept and the potential for networking to ensure quality and standardised bereavement support.
Bereavement counsellors attempted to arrange their support to align with family members’ financial resources, which grieving mothers in a previous study perceived as empowering care by respecting their individual desires (Lundqvist et al., 2002). Many family members consider it important to be able to stay in touch with their child (at the time of death) and to create memories that provide comfort in the future (Meert et al., 2009; Meert et al., 2005). The present results confirm this need for many bereaved family members and show that bereavement support may provide individual approaches to meet it. Counsellors felt it important to impress upon families that different family members may display vastly different grieving behaviours. This was aimed at preventing misunderstandings. Indeed, studies have shown that, for example, children of different ages can show completely different grieving behaviours (Auman, 2007) and it is especially important for parents to perceive this and classify it correctly (Wallace Chi Ho et al., 2022). That family members behave differently when grieving also corresponds to the barrier described in the literature of the unpredictability of parental feelings and reactions. Knowledge of parents’ emotional reactions and coping strategies could help to reduce health professionals’ fear of emotionally charged conversations, thereby removing barriers to end-of-life discussions (Kochen et al., 2021).
As bereavement support is a highly individual intervention, it may be challenging to identify and evaluate quality support criteria. On the one hand, bereavement counsellors noted that a high number of support sessions with bereaved family members seemed to increase family members’ satisfaction (Nikkola et al., 2013); on the other hand, the aim of bereavement support is for family members to no longer require it in their everyday life. The present findings suggest that, early in the support process, bereavement counsellors should show empathy and address the individual needs of bereaved family members, to encourage further meetings to be arranged. However, ultimately, it is a good sign if bereaved family members can operate well on their own, without bereavement support.
The present study also contributed new findings about the experiences of bereavement counsellors within the BLNS. In particular, counsellors valued the opportunities provided by the BLNS to network with and exchange experiences with one another, in a context in which such an exchange of interprofessional knowledge is otherwise difficult. Additionally, they perceived the accessibility of BNLS contact persons (to whom they directed their suggestions and comments) as very important for maintaining the quality of their work and overcoming barriers of a bureaucratic organisational structure. Ultimately, the BNLS was recognised as an important support for counsellors’ individual work, allowing them to provide high-quality bereavement support to grieving families. This was also confirmed by counsellors’ forms of self-care, which included supervision within the network in addition to more personal strategies for handling emotional stress. Such support in dealing with emotional stress and difficulty seemed to prevent against stress and burnout (Epp, 2012; Sihvola et al., 2022), as well as depression (Tarantino et al., 2013), enabling the counsellors to provide more compassionate care (Biber, 2022). This may be particularly important for counsellors, who, like other palliative care providers, are at high risk of burnout and compassion fatigue. The challenges counsellors face in their daily work are particularly emotional stress, compassion fatigue and cost pressures that affect the whole healthcare system (Grauerholz et al., 2020).
Another suggestion for improvement of access to support for those affected, is to raise public awareness of the network, as those affected, especially in rural areas, more or less find out about the offer by chance and therefore not all of them have the opportunity to make use of the support.
To support the development and improvement of the BNLS and to complete this qualitative analysis at hand, further research should aim at investigating the experiences of some accompanied relatives and compare the results to the present findings.
Strengths and Limitations
The present study was based on an analysis of 12 qualitative interviews with 15 (out of a total 45) bereavement counsellors working within the BNLS. For a qualitative study, this represents high coverage of the field, ensuring the consideration of a broad range of experiences.
Furthermore, this study deals with the under-researched field of bereavement support from a practitioner’s perspective. To date, most of the literature presents the perspective of the bereaved.
Our results from the BLNS are transferable to volunteer bereavement support initiatives throughout Germany and beyond, because the BLNS serves as an example for an overall challenge of bereavement support in health care systems.
During the recruitment phase, bereavement counsellors were approached by the BNLS and all bereavement counsellors who responded to the interview request were interviewed. A selection bias, whereby participants may have tended to have a positive attitude towards the BNLS, cannot be excluded. Furthermore, it cannot be ruled out that the group interview led to a different dynamic in answers than in the individual interviews. A further methodical limitation is that, within the analysis of the interviews, only one author conducted the coding. However, to compensate for possible faults, the coding tree and coding guide were checked separately by two raters.
Conclusions
Bereavement counsellors perceived professional bereavement support as a core component of the care provided to family members grieving their life-limiting ill or already deceased children, and a form of care that complements the existing offers of volunteers and therapists and offers thereby an opportunity to close a gap in care. As bereavement support for bereaved parents is particularly challenging for counsellors, they need good training and interprofessional exchange in order to avoid personal insecurities and long-term emotional stress (Kochen et al., 2022). Against this background, counsellors experienced the BNLS as very supportive and positive. Specifically, counsellors perceived the interprofessional exchange and supervision that the BNLS offers as stress relieving, representing an advantage over bereavement support work outside the network. Finally, counsellors considered it particularly important that support for and recognition of the BNLS’s work be maintained or increased through greater public outreach and strategic partnerships.
Looking to the future, all counsellors considered it inevitable that the network would become better known through greater public relations to improve reach and effectiveness. Partnerships with clinics and doctors were seen as potentially helpful in overcoming individual barriers in society to the awareness and recognition of bereavement care, and thereby increasing the access for bereaved families to the BNLS services. This would also improve the professional image of the BNLS.
Supplemental Material
Supplemental Material - Bereavement Counsellors’ Experiences Supporting the Families of Deceased Children Within a German Bereavement Network– A Qualitative Interview Study
Supplemental Material for Bereavement Counsellors’ Experiences Supporting the Families of Deceased Children Within a German Bereavement Network– A Qualitative Interview Study by Merle Betke, Stephanie Stiel and Sven Schwabe in OMEGA-Journal of Death and Dying
Footnotes
Acknowledgments
We thank all interview partners for their participation in the study. We also acknowledge Valerie Appleby’s copy-editing of the language in the present article.
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) received no financial support for the research, authorship, and/or publication of this article.
Ethical Statement
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