“Golden” moments and more in grief talk: Healthcare professionals’ approaches to discussing loss and grief with parents of children with severe neurological impairment

Abstract

Background:

Experiential studies on healthcare professionals’ approaches to loss and grief discussions with parents of children with severe neurological impairment are needed to understand grief experiences of this emerging population

Aim:

This study aimed to explore healthcare professionals’ experiences regarding their approach to these discussions, as well as to gather recommendations for best practices in initiating these conversations.

Design:

A qualitative exploratory study was conducted. Transcripts were analysed using reflexive thematic analysis, adhering to the reflexive thematic analysis reporting guidelines (RTARG).

Setting/Participants:

The study purposively sampled healthcare professionals (n = 20) from medical, health, allied health, and social care disciplines. Participants were recruited within hospital, hospice, community, and disability settings in Ireland.

Results:

Four key themes were identified during the analysis: (1) Conversations with a Purpose, (2) Being Receptive to Moments for Grief Talk, (3) It’s the Parent’s Story, and (4) A Skilled and Compassionate Workforce. They represent how professionals purposefully engaged in loss and grief discussions, attuning to moments when parents were receptive to such discussions. Professionals emphasised the need to respect parents’ autonomy in seeking and accepting grief support. Compassionate communication was central to these discussions.

Conclusions:

This study represents a foundational step in understanding how professionals approach discussions of loss and grief. The themes underscore the need for increased awareness among professionals to ensure grief support is available at the level of contact, as advocated by the public health model of bereavement support. This study emphasises the importance of supporting bereavement care throughout the condition trajectory.

What is already known about this topic?

• Parents of children with life-limiting severe neurological impairment experience multiple personal losses and anticipatory grief during the course of their child’s condition.

• Existing bereavement literature primarily focuses on care after the loss of a child.

• There is a significant gap in understanding professionals’ discussions of loss and grief with parents during the child’s condition trajectory.

What this paper adds?

• This study sheds light on the complex factor’s healthcare professionals consider before initiating conversations about loss and grief with parents of children with severe neurological impairment.

• Professionals highlight that parents often suppress grief to focus on their child’s needs, reflecting patterns similar to end-of-life research.

• The disenfranchised nature of parents’ personal losses further compounds their grief experience.

• Bereavement training among professionals was associated with a greater focus on psychoeducation, recognition of parent readiness and initiation of advance care planning discussions.

Implications for practice, theory, or policy

• Embedding grief-informed practice across all disciplines involved in the care of these families is warranted.

• Greater attention should be given to understanding the unique grief dynamics experienced by this parent group, particularly in the context of an unpredictable trajectory.

• Further research to address the gap in understanding the impact of loss and grief discussions on bereavement outcomes.

• The public model of bereavement support could serve as a useful framework for addressing the grief support requirements of this group.

Introduction

Children with severe neurological impairments represent a heterogeneous group, encompassing many congenital and neurological conditions associated with severe disabilities, cognitive impairments, and developmental delays. ¹ They have complex care needs, characterised by unpredictable disease trajectories and progressive functional decline. These children and families constitute most of those who would benefit from a palliative care approach addressing both medical and psychosocial needs. ² Advances in medical treatments allow these children to live longer within increasingly medicalised home environments, supported by multi-disciplinary teams in tertiary, primary care, disability, and specialist palliative care settings.^3,4 These conditions typically involve recurrent hospitalisations from acute episodes, during which the child may recover to their prior baseline or experience further decline. These sustained and escalating demands increase the risk of caregiver morbidity, mortality and prolonged grief disorder. ⁵ While bereavement care tailored to the individual needs of families has shown significant benefits,^6,7 existing literature predominantly focuses on care after the death of a child. There is a notable gap in research addressing loss experiences throughout the care journey for parents, particularly during periods of anticipatory grief and emotional strain leading up to the death. ⁸

Contemporary bereavement theory provides new frameworks for healthcare professionals to support parents experiencing grief.^{9 –12} This study is grounded in contemporary grief theories that emphasise the subjective and dynamic nature of bereavement. The uncertain and often prolonged nature of the illness experienced by this group distinguishes severe neurological impairment-related grief from other paediatric populations such as childhood cancer. Research in severe neurological impairment highlights prolonged uncertainty and alternating periods of relative stability and acute crises, which can lead parents to normalise survival after repeated near-death episodes and subsequently feel shocked when death occurs.^13,14 By contrast, parental bereavement outcomes in paediatric cancer are often shaped by prognostic awareness and the quality of communication during the illness^{15 –17} These losses are further complicated by limited social recognition and validation.

Even with this understanding, grief is a uniquely individual experience, and as such, grief-informed practice is critical in delivering targeted support to those at risk of encountering complications in their grieving process. ¹⁸ Some parents may find support that names and validates grief responses helpful for processing their loss, ensuring grief does not accumulate over an unpredictable illness trajectory. Additionally, interactions during the end-of-life phase related to communication and continuity of care have been linked to less long-term grief. ¹⁹ Legacy-making through dedicated activities, or the fulfilment of wishes and preferences near the time of death, provides comfort in knowing the care received aligned with goals and values. ²⁰ Recent studies by Holland ²¹ and Lichtenthal et al. ²² suggest that pre-loss grief support mitigates feelings of regret and unfinished business after death, enabling ongoing emotional connection post-loss. Professionals therefore face a tension between initiating grief-related discussions and preserving hope and coping strategies that prioritise day-to-day parenting. Recent literature on parental coping at end-of-life suggests parents downregulate their grief by employing personal supportive strategies to prioritise caregiving.^23,24

Given these complexities, healthcare professionals require robust, evidence-based guidance to inform best practices in providing support that addresses the unique needs of this parent group. This guidance is essential for understanding the appropriate timing and approaches to sensitive conversations about grief, legacy, and anticipatory mourning. This study aimed to explore the views and experiences of healthcare professionals on their approach to, and timing of such discussions, and to gather best practice recommendations.

Methods

Design

A qualitative exploratory study adopting a constructivist approach was conducted, utilising semi-structured in-depth interviews. Reflective thematic analysis ²⁵ allowed for deep exploration of the phenomenology underlying healthcare professionals’ experiences of discussing loss and grief with parents of children with life-limiting severe neurological impairments. The study was reported following the reflexive thematic analysis reporting guidelines (RTARG). ²⁶

Reflexivity

Reflexivity acknowledges that knowledge generation in qualitative research is subjective and context-dependent. ²⁷ This study was shaped by the lead researcher’s bereavement knowledge, social work practice experience, and commitment to a social justice value-system. The first author is a principal social worker with extensive experience in children’s disability and formal training in bereavement support. Reflexive engagement, including reflective notetaking by the primary researcher and in-depth discussions with the second researcher who had a predominantly research-based background with significant experience of research on death, dying and bereavement, informed decisions throughout the research design and data analysis, ensuring rigour and transparency in knowledge production.

Population and sampling

Potential participants were drawn from medical, health, allied health and social care professions working in hospital, hospice, community and disability settings. In Ireland, paediatric palliative care services are delivered through a multi-disciplinary, co-operative team approach, usually led by a hospital-based paediatric consultant. Standards of palliative care knowledge, including grief and bereavement, can vary. Purposive sampling was employed to recruit professionals who had experience of working with this parent group. These included nurses working across various roles, social work, psychology, physiotherapy and a palliative care manager. No specific exclusion criteria were applied if the inclusion criteria were met.

Recruitment

Recruitment was conducted via social media platforms and through professional associations and specialist organisations who agreed to disseminate information about the study within their networks. This information highlighted the focus on discussions of loss and grief in advance of the death of a child from severe neurological impairment and included an invitation to contact the lead researcher (EB). Those who expressed an interest in participating were sent an information sheet and consent form via email. Additional snowball recruitment occurred through word of mouth, with participants invited to share information with colleagues. Professionals were recruited within specialist and non-specialist settings, with those in specialist roles typically having access to bereavement education and training.

Participant characteristics

Twenty participants were recruited from a range of healthcare professions across Ireland to ensure a wide geographical representation. Prior to their current roles, participants had diverse practice experiences, primarily in general nursing or disability-related positions. During the analysis process as described below, the influence of bereavement training and experience was noted, and so relevant information is provided in Table 1. Ten professionals had received relevant training at Level 9 (postgraduate), and a further five clinicians were working in specialist palliative care posts reflecting significant experience relevant to the study. In the remaining cases, participants either indicated they had no training, or it was unclear. Sixteen participants were interviewed by EB, while the remaining four were interviewed by SG.

Table 1.

Participant characteristics (n = 20).

Professional role	Type of organisation	Relevant training	Relevant experience
Nurse (n = 10)	Children’s hospice (n = 7) a	No information on formal training = 10	0–4 years = 6
Social worker (n = 5)	Private nursing agency (n = 3)		5–9 years = 7
Other (n = 5)	Community palliative care (n = 2)	Evidence of level 9 bereavement/palliative care or therapy training = 10	10–14 years = 2
	Children’s charity (n = 2)		15–19 years = 2
	Disability service provider (n = 2)		20+ years = 3
	Maternity hospital (n = 2)
	Other (n = 3) a

^aDenotes a split post that is double counted.

Data collection

In-depth semi-structured interviews were conducted between March and August 2024, either in person or via Zoom, using an interview topic guide (see Supplemental Material) informed by the integrative conceptual framework in Figure 1. This synthesised three inter-related bodies of knowledge: contemporary grief research (including dual-process and attachment-based models), bereavement theory (particularly meaning-reconstruction), and empirical literature on parenting children with severe neurological impairment, which highlights prolonged uncertainty, emotional burden, anticipatory grief and disrupted parental identities. Together, these literatures conceptualised anticipatory grief as a dynamic, relational and meaning-based process embedded within intensive caregiving, and shaped questions about timing, identity and meaning. Specifically, grief-trajectory and dual-process models informed questions about how and when conversations about deterioration and prognosis occurred; attachment theory informed questions about parental identity and fear of separation; and meaning-reconstruction theory informed questions about how parents made sense of cumulative loss. Severe neurological impairment research grounded these concepts in prolonged and uncertain illness.

Figure 1.

Integrative conceptual framework informing study design and data collection.

Interviews explored participants’ professional backgrounds, experiences of supporting parents, and perspectives on discussing grief prior to a child’s death, with opportunities to offer practice recommendations. Interviews were flexibly tailored to participants’ experience (e.g. greater focus on anticipatory conversations for those with post-death experience). Field notes were written after each interview. Interviews lasted 30–80 min (mean 60), were audio-recorded with consent, transcribed verbatim and de-identified.

Data analysis

The data were analysed using reflexive thematic analysis, ²⁵ which enabled a thorough exploration of participants’ positioning, perspectives, and practices. Initially, EB listened to all recordings and read and reread the transcripts to become familiar with the dataset. During this process, it became evident that professionals with bereavement training and experience (as described in Table 1) were more likely to initiate conversations relating to loss and grief. Consequently, the coding and theme generation processes were divided into two data segments to account for this difference.

For both data segments, coding labels were identified through reflective engagement with the data at both semantic and latent levels. Coding labels from each data segment were organised into initial themes using mind-mapping techniques to identify the underlying story of each theme. These initial themes were then shared with SG, who also reviewed a sample of coded transcripts, providing comments to support EB’s reflection and analysis. For example, following discussion of Theme 4 as it developed, the descriptor “skilled” was incorporated to more accurately capture the connections that became evident through reflection on the influence of training and experience. As a result, the thematic analysis presented represents the first author’s own critical reflection, with SG’s role one of supporting consideration of alternative perspectives in the analysis.

In the integrative phase, initial themes from both data segments (provided as Supplemental material) were reviewed to explore conceptual resonances and distinctions. The initial themes from both data segments were discussed and amalgamated, refined, and renamed to generate the final themes. Some were merged or rearticulated to reflect shared patterns, while others were retained to preserve unique aspects of professional perspectives. For example, “HCPs’ supporting role” was merged with the theme of “Conversations with a purpose,” while “Holding the space” was integrated with “Trusted HCPs are uniquely placed to respond to parent cues” and renamed “Being receptive to moments for grief talk.” These revisions reflected overlaps in how professionals recognised and responded to emotional cues from parents, indicating a readiness to engage in such discussions. The final themes offer a reflexively developed synthesis that captures the complexity and diversity of professionals’ understandings of parental grief.

The analysis was also guided by the theories that shaped the design of the study. Meaning reconstruction theory provided a focus on how healthcare professionals interpreted parents’ efforts to make sense of the child’s diagnosis and the uncertain trajectory, which shapes the nature of their grief over time. The dual process model drew attention to how professionals observed parents’ oscillation between confronting loss and attending to the demands of this unpredictable disease trajectory. ²⁸ Continuing bonds theory sensitised the analysis to the ways in which grief manifests as a dynamic process of maintaining bonds through memories, caregiving, and identity that shape parents’ ongoing experience. In addition, anticipatory grief further sensitised the researcher to emotional responses prior to the child’s death. Finally, the concept of disenfranchised grief helped illuminate how parents’ experiences of loss were frequently minimised or rendered invisible. This perspective enabled the analysis to capture not only overt expressions of grief but also those that were implicit, delegitimised or silenced. Together, these frameworks shaped the coding and interpretation processes, enabling the development of themes that reflected the complex, non-linear, and relational nature of parental grief as recognised and engaged with by healthcare professionals.

Ethics

Ethics approval for this study was granted by University College Dublin (HS-C-24-3-Brennan-Guerin) and LauraLynn Ireland Children’s Hospice (LLEC 14 Version 1 12 Feb 2024).

Results

Four themes were developed during the analysis: (1) Conversations with a Purpose, (2) Being Receptive to Moments for Grief Talk, (3) It’s the Parent’s Story, and (4) A Skilled and Compassionate Workforce. Anonymised quotes were used to highlight key findings from the analysis. As noted above, the analysis highlighted the influence of training on perceptions, with some themes showing more nuanced patterns relating to training than others. Participants with bereavement training more often described intentional, psychoeducational and anticipatory approaches to grief conversations, including normalising intrusive thoughts, supporting meaning-making, and preparing parents for future loss. Those without training relied more on experience and relational sensitivity, often expressing uncertainty about timing and concern about causing harm, indicating that training shaped the depth, timing and therapeutic focus of these conversations rather than whether they occurred. Patterns related to these groupings are noted in the findings where relevant, noting that the comparisons were not marked in all four themes.

The finalised thematic framework, presented as a conceptual map in Figure 2, illustrates the overall narrative of the analysis and identifies both links to themes (how specific practices and processes connect to each theme) and relationships between themes (how the themes dynamically interact in practice). In Figure 2, Theme 4 underpins all other themes, reflecting how professionals’ skills, training, and emotional and relational work shape the way grief conversations are initiated and sustained. Themes 1 and 2 show how these capacities are enacted through purposeful conversations and attentiveness to moments of openness, while Theme 3 represents the interpretive centre of the framework, where parental identity, meaning-making and autonomy shape how grief is experienced and expressed.

Figure 2.

Conceptual model of professionals’ engagement with parental grief.

Theme 1 – Conversations with a purpose

This theme captures healthcare professionals’ beliefs, grounded in their knowledge and experience of the profound impact of loss and grief on parents, that simply listening to the parent’s story was not enough. Instead, they needed to actively engage with their story to offer comfort, guidance, and support. By actively listening, participants felt they could help parents process complex emotions to support coping and adaptation, and ultimately, improve bereavement outcomes.

I would get that sense that they want a listening ear, they want an opportunity to discuss it, and they want an opportunity to discuss it with somebody who isn’t going to say don’t be thinking like that (P10).

As illustrated in Figure 2, Theme 1 is linked to Theme 4, with compassionate communication and professional skill forming the mechanism through which purposeful grief conversations are enacted, marked by preparation and a focus on outcomes.

Over time, each small opportunity to validate and normalise emotions was regarded as invaluable, helping parents gradually make sense of the broader reality of the impending loss of their child: “I think it’s always just normalise what they are going through. And it’s the pain of love and the pain of losing somebody” (P01). Meaningful and purposeful conversations were best initiated when parents signalled their readiness to engage. With trust established, professionals noted that parents were more receptive to discussing how uncertainty affected their identity, worldview, and social circumstances.

Parents often feared judgement when expressing difficult emotions, such as thoughts about being ready for their child to die to prevent further suffering:

So that mother had an incredibly harrowing summer where she had reached the stage of wanting and needing him to go for himself. That hugely contributed to guilt both when he was dying, and afterwards she very much felt that she’d wished him away. (P12).

To address this, professionals made a conscious effort to offer unconditional support which, they observed, was not always available within the wider family or social circle. Professionals recognised that some episodes marked irreversible decline and felt responsible for helping parents prepare for this reality: “only when they started to reflect on, actually, I’ve lost so much, and what my real fears and worries are when I actually lose my child” (P04). The aftermath of an acute episode or noticeable changes in a child’s condition created opportunities to discuss disease progression:

The most important conversations are before the fact. Like, the more you can plan, the more you can kind of plant those seeds with parents the more in control and maybe empowered they feel (P10).

In assuming a psychoeducational role, bereavement-trained participants felt they helped parents better understand intrusive thoughts and confusing emotions triggered by envisioning a future without their child: “[Parents] may have thoughts like this, and that’s very normal, and that’s quite typical of the human mind that we start to prepare ourselves for the future” (P02). Figure 2 shows how these purposeful conversations depend on professional skill (Theme 4) and create the conditions for parents to explore meaning and identity (Theme 3).

Theme 2 – Being receptive to moments for grief talk

In Figure 2, Theme 2 occupies a bridging position between professional skill (Theme 4) and the parent’s narrative (Theme 3), reflecting how professionals must first recognise and hold moments of emotional openness before deeper meaning-making can occur. The daily realities of caregiving often left parents with little time to process the meaning and impact of their child’s diagnosis. By attuning to moments when parents were open to telling their story, they sought to create a reflective space for grief talk. Holding this space allowed parents to explore complex and conflicting emotions related to their child’s uncertain trajectory, to feel heard, validated, and shift focus, momentarily, to consider their own needs:

Giving them a space where they can have a little cry if that’s what they want to do and just holding the space so that they know that I’m not afraid of them crying. I’m not afraid of their grief (P14).

Creating a safe space allowed parents to discuss sensitive issues, articulate fears and concerns, and receive emotional validation for feelings that were often silenced in everyday interactions:

They just don’t want the young person to suffer anymore. And for the parent to even say that—you can sometimes see it as a physical release, that they’ve finally had an opportunity to share that in a safe and boundaried space (P02).

In doing so, parents were able to acknowledge the profound yet socially marginalised losses they experience, aligning with the concept of disenfranchised grief:

Many families are reluctant to acknowledge. . . they feel almost ashamed that they have that sense of loss and grief, and that they’re grieving for the child they were going to have. It’s quite prevalent, but it is almost an elephant in the room (P15).

Such conversations required professionals to maintain a heightened awareness of emotional cues and signals, often revealed through a trusted and supportive relationship:

Sometimes you get a moment with them where you feel maybe this is the opportunity just to take that minute. . . And you might take that opportunity, a golden opportunity (P05).

Training helped professionals recognise these moments and respond with empathy. As illustrated in Figure 2, these moments of receptivity connect Theme 2 directly to Theme 3, enabling parents to explore ambivalent, often socially silenced thoughts about their child’s prognosis within a trusted relational space. Professionals used open-ended questions to assess parents’ prognostic understanding. For trained professionals, this approach underscored future discussions regarding advance care planning and memorial work:

The seeds you plant can take years to germinate. It is slow because there is that fear of accepting that the outcome is going to be death (P10).

Referral to palliative care services was recognised as a significant event in the child’s trajectory, marking a clear point where discussions of loss and grief could be approached with greater openness as the child’s impending death became more real for parents:

Often for them to accept a referral of coming to a hospice or needing hospice support, things have dramatically changed for that family (P17).

Theme 3 – It’s the parent’s story

At the heart of their work was the parent’s story, their unique journey shaped by their worldview, life circumstances, and expertise in knowing their child. Respecting this meant meeting parents where they were, listening without judgement to what mattered most to them, while affirming their role as the central figures in their child’s life. Their role, essentially, was to be alongside parents in their journey, to offer emotional support while allowing them to navigate their needs at their own pace. The large numbers of professionals involved could overwhelm parents, highlighting the need for sensitivity regarding who they felt comfortable opening up to:

Sometimes we as professionals can see families need help or need support. But really it’s for them to decide that. So I always try to make myself available and let parents know that I’m here (P08).

Understanding the value parents placed on their parenting role was central to this approach. Professionals maintained a positive outlook, celebrating each milestone no matter how delayed, or different, from typical developmental progress.

A child might crawl, sit on their own, walk and it could be at a much later stage. But that’s to be celebrated every day, whatever it is the child is doing on that journey, that’s progress (P05).

Respect for parental autonomy in discussions about loss and grief was rooted in a rights-based approach that acknowledged parents’ choices and respected their unique path through grief.

You’re always seeking consent, and I think you’re always checking in with them. How far do I want to go and letting them be the drivers and be the parents and decide (P01).

Hope sustained many parents, making reluctance to engage in difficult conversations an adaptive coping strategy. I think hope is incredibly important, you’re not going to get through your days if all you’re thinking about is the sick child in front of you all the time, and you can’t see past that it’s hard to keep moving and keep going (P18).

Figure 2 shows Theme 3 as the interpretive centre of the framework, where parental identity, hope, and meaning-making shape how grief conversations are received, timed and sustained across themes 1 and 2.

Theme 4 – Skilled and compassionate workforce

In Figure 2, Theme 4 underpins all other themes, highlighting how professional skill, training and emotional capacity shape whether and how grief conversations (Themes 1 and 2) can occur in ways that honour the parent’s story (Theme 3). Compassionate communication enabled professionals to respond in the moment to evolving needs. In community teams, those with bereavement training felt equipped to provide grief support beyond helping parents adapt to changing daily realities towards exploring the emotional impact and meaning of the child’s health deterioration over time.

Maybe the child has been very unwell, and they can sense there’s a change here. Maybe there’s more acceptance of this child is not going to survive maybe as long as I thought, and there could be conversations (P05).

In contrast, those without training relied on their practice experience to navigate sensitive conversations. They acknowledged this sometimes constrained their ability to offer comprehensive and tailored support:

I would often feel out of my depth and feel that I need better counselling skills to support parents through bereavement and loss, and I absolutely see it as part of our role (P12).

Moreover, concern was expressed that professionals who lacked the necessary skills, training, or sensitivity risked pushing conversations in ways that might cause harm due to lack of supervision, compassion fatigue, or driven by unexamined emotional needs:

I think it’s very normal for parents to cope by just keep going, they keep moving. And there is a chance that it could be counterproductive at times, to open that unless it first comes from the parent (P20).

Meanwhile, grief went unrecognised in disability services, where the primary focus was on rehabilitation, despite evidence of long-standing relationships, often from birth. This contributed to missed opportunities to address grief support needs.

When I worked in disability services, staff weren’t comfortable or trained in anticipatory grief. I see that as a huge gap now (P15).

In particular, concerns were raised about a pervasive culture of death denial within disability services:

We all knew as a professional team these children were going to die eventually, but nobody was actually talking to the mothers about it (P04).

Discussion

The findings, as represented in Figure 2, represent a dynamic system rather than a set of discrete themes. The model shows how a skilled and compassionate workforce (Theme 4) enables professionals to engage in purposeful and timely grief conversations (Themes 1 and 2), which in turn support parents’ meaning-making, identity and autonomy (Theme 3). These processes are mutually reinforcing: training supports recognition of moments for grief talk, while feeling heard and respected supports parents’ engagement in anticipatory and meaning-focused grief conversations. Participants typically assessed parents’ openness to these discussions by interpreting parental cues, particularly in response to significant events, such as health deterioration or emotional distress. Psychoeducational support was frequently used to validate and normalise grief-related emotions. Importantly, participants emphasised respect for parental autonomy, allowing parents to dictate the pace and nature of their grieving process. They expressed concern that pressuring parents into conversations about grief could exacerbate distress.

The dynamics of parental grief described by participants align with previous qualitative research on grief at the end-of-life.^23,24 Parents were observed to often suppress their grief to focus on caregiving, limiting grief-related conversations to trusted professionals. Our study appears to extend this finding by indicating that the pattern may occur across the caregiving trajectory and may involve an additional layer of complexity related to disenfranchised grief arising from personal losses that are not always publicly acknowledged. ²⁹

Discussions resonated with previous research identifying the importance of preparation for the impending loss which focus on valuing the parenting role, ³⁰ advance care planning, ³¹ and memorial work. ³² Additionally, participants identified the influence of meaning-making on mediating pre-loss grief. In the literature, the absence of meaning-making has been linked to heightened grief intensity after the death. ³³ As depicted in Figure 2, meaning-making does not occur in isolation but emerges through repeated, skilfully held conversations that are responsive to parental readiness and grounded in long-term support relationships. Additionally, pre-loss grief and inadequate preparation were associated with adverse bereavement outcomes, which appear to be mediated by caregivers’ coping styles and their ability to adapt and employ flexible coping strategies.

Implications of the study

The findings of this study indicate healthcare professionals play a crucial role in supporting parents to sustain caregiving during an uncertain trajectory and may also mitigate adverse bereavement outcomes. While there are similarities between these parents and those who have lost children to cancer, notable differences arise from the experience of caring for a severely disabled child from birth. A detailed programme of research is necessary to fully understand the emotional and psychological needs of these parents and to tailor grief support according to the public health model of bereavement to mitigate risk of prolonged grief disorder. ³⁴

In our study, professionals who had received bereavement training reported feeling more equipped to engage with parents on sensitive topics. Integrating these experiences into bereavement training could lead to a more comprehensive and compassionate approach, potentially improving bereavement outcomes. However, the reluctance to acknowledge and address grief within disability services exacerbates the challenges families face, as their grief may often be overlooked or marginalised. This highlights the urgent need for the disability sector to adopt more inclusive practices that better address the diverse needs of all families accessing their services.

Limitations

This study has several limitations that should be considered when interpreting the findings. First, the participants self-selected for interviews and were likely to have a particular interest in the topic, which may introduce selection bias. As a result, the experiences shared by participants may not represent those of all individuals in similar circumstances, limiting the generalisability of the findings.

Conclusions

Participants in this study recognised their important role in discussing loss and grief with parents, using their knowledge and skills to engage in conversations when parents showed receptiveness. As the end-of-life approached, professionals in specialist roles intentionally initiated these discussions to help prepare parents for the challenges ahead. Parents were often observed to downregulate grief in order to sustain caregiving.