Family conflict and aggression in the paediatric intensive care unit: Responding to challenges in practice

Abstract

The paediatric intensive care unit (PICU) is a high-stress environment for parents, families and health care professionals (HCPs) alike. Family members experiencing stress or grief related to the admission of their sick child may at times exhibit challenging behaviours; these exist on a continuum from those that are anticipated in context, through to unacceptable aggression. Rare, extreme behaviours include threats, verbal or even physical abuse. Both extreme and recurrent ‘subthreshold’ behaviours can cause significant staff distress, impede optimal clinical care and compromise patient outcomes. The unique PICU environment and model of care may magnify stressors for both families and staff and the family-centred approach to care (FCC) central to paediatric practice, may also contribute to contextual challenges. Pervasive conflict in paediatric healthcare is harmful for patients, families, PICU staff and the institution more broadly. We propose that caring for children and caring for staff are inseparable goals and the latter has been inadvertently but detrimentally deprioritised as FCC has become a primary focus. A transparent and graded hierarchy of responses to variable levels of challenging behaviour is necessary to ensure that families are supported, while HCPs remain protected in the workplace. This requires establishing firm limits supported by all teams and levels of the institution. As such, we aim to identify and clarify the context and impact of challenging parent and family behaviour in the PICU and to offer potential, proactive mitigation strategies, based on reflections and stakeholder discussion following recent clinical challenges and experiences in our unit.

Keywords

Minors care for specific groups clinical ethics health care quality health care occupational health patient relationships professional ethics

Introduction

Conflict in paediatric practice and paediatric intensive care units (PICUs) is an increasingly recognized clinical challenge.^1–3 There is rapidly expanding literature examining triggers for conflict and approaches to resolving disagreement between medical teams and families.^3–6 Recent high-profile cases from the UK have been widely examined in both the medical literature and the public domain.^7–9 Indeed, the proposed ‘Charlie's Law’ following the Gard case recognised the need for better ways to ameliorate substantial harm from conflict in paediatric healthcare.¹⁰ Recent clinical experience in our unit echoes this broader trend.

The focus of much discourse has been, appropriately, on how paediatric health care professionals (HCPs) can best serve the interests of our patients and their families. This emphasis has potentially diverted attention away from considering the acute impact of such conflict on HCPs themselves, except when moral distress ensues.^11,12 We examine this issue in the unique PICU context and propose reasons why its influence has been insufficiently weighted in the safety calculus. We outline a continuum of challenging behaviours encountered by PICU staff and reflect on some flow-on-effects of prioritising the family-centred model-of-care (FCC). We suggest that the impact of conflict on healthcare staff well-being specifically is inadequately accounted for in current literature, with much FCC research and meta-analyses being primarily focused on parents and families.¹³ More robust empirical research is required to comprehensively quantify harm in this multifaceted area of paediatric care as currently research on mitigating strategies is equivocal.³ We conclude that a re-balance is necessary to mitigate these under-examined factors which are inextricably linked to the safety and quality of paediatric health care.

The PICU context

PICUs provide high acuity care for children who are critically ill or injured. As such, they are high-stress environments for parents, carers and HCPs alike.¹⁴ Parents and carers may be shocked, grieving, anxious, sleep-deprived and confused.¹⁵ HCPs in the PICU anticipate these human responses and aim to alleviate stressors and support families by offering information, empathy, patience and support.¹³ Despite awareness and sensitivity to predisposing factors, HCPs nevertheless encounter challenging family behaviours that are, at times, sufficiently extreme to cause harm.¹⁶

The PICU differs from other hospital areas; as factors including the physical environment and the clinical context intensify the ways in which parents and families experience and engage in their child's care. This contributes to the increased prevalence of challenging family behaviours in PICU and a magnified effect on HCPs.^1,16 Parents and families frequently suffer both acute and chronic stress because of their child's health care concerns.¹⁵ Care provided in PICU is invasive and complex with most parents unfamiliar with the medical language and technology common to this area. The clinical acuity of PICU patients necessitates constant monitoring and frequent investigations; this may aggravate anxiety for parents who are alert to alarms or on ‘tenterhooks’ waiting for results that may affect their child's survival. What has been normalised for PICU staff is often foreign and frightening to parents.¹⁵

The role of parents as decision-makers, carers and advocates for their child may be undermined in this environment.¹⁷ Their wish ‘to be a good parent’ may be intrinsically challenged, and perceived parental disempowerment can be variably attributed. Firstly, PICU medical equipment often limits parents’ ability to physically interact with their children and sedation may mean the child is, in a more abstract way, ‘absent’. Secondly, standard staff procedures to achieve clinical control may lead to a sense that the child belongs to PICU staff rather than the parents. Thirdly, parents have reported they are often ‘listeners’ rather than active participants in decision making; ‘separated’ by implicit power differentials, comprehension of medical jargon, or asked to leave the room in emergencies.¹⁴ All these factors can aggravate parental stress and challenge the central parental role.¹⁸ Recent research showed that families in ICU primarily feel sadness, anger and fear and use a vast array of individual coping strategies.¹⁹ Despite this, two-thirds experienced depression, anxiety and post-traumatic stress during the admission and one half of this group still experienced these symptoms three months post admission.¹⁹

Intensive care units share a 24-hour care model, providing families continuous access to treating clinicians. This is essential for decision-making, however ‘around the clock’ bedside activity can be detrimental to parent's physical well-being, worsening sleep deprivation and hunger.²⁰ Parents may feel that their role as an advocate or ‘good parent’ requires them to be ever-present.¹⁴ Additionally, competing interests of staff caring for other sick children can lead families to perceive that clinical care is insufficient and interpret this as ‘undervaluing’ their child. Families of chronic patients or those with life-limiting conditions may be especially vulnerable to such perceptions.¹⁶

The PICU environment also exacerbates the effects of challenging family behaviours and conflict on staff. PICU nursing staff shifts are generally 12 hours duration, thus bedside nurses may be exposed to negative family interactions for protracted periods. Highly expressed emotions from parents can be challenging to manage in a unit where space is at a premium and the clinician–patient ratio is high.¹⁵

Finally, the microcosmic nature of a PICU allows for rapid dissemination of information and experiences between families and staff. Families often bond over shared ordeals and commonly become well acquainted with other families. Similarly, PICU teams are often close-knit and are likely to share grievances and discuss the impact of interactions with families. For all parties, constantly experiencing challenging communication and behavioural styles can perfuse the unit with malaise, and pervasive interpersonal tension can tacitly lead to avoidance between parents and HCPs.²¹

Patient and family-centred care

Paediatric HCPs in the developed world now consider patient and FCC a core component of clinical practice.¹³ The evolution from a ‘paternalistic’ model of medical decision-making to a shared decision-making model has been ubiquitous.^15,22 Concurrently, a sociocultural shift in western societies has promoted respect for autonomy and the rights of individuals to have their choices and wishes prioritised.¹⁸ The uptake of FCC has reflected and amplified these shifts.

The presumed benefits of the FCC model are numerous¹³: children are relational beings who generally flourish within a family. For children whose conditions are complex, chronic or rare, parents are often the true experts in their child's care and their intimate knowledge of their child must be respected and valued.²³ However, exclusively prioritising FCC principles without sufficient consideration of HCP well-being is problematic. In contrasting ‘centeredness’ of patient (PCC), child (CCC) and FCC, current health models may be confusing for HCPs.¹⁸ PCC and CCC focus predominantly on the individual ‘rights’ and needs of patients;²⁴ and arguably all inadequately acknowledge that caring for staff is integral to caring for children and families.

We propose that tolerance by HCPs of unacceptable behaviours has been an unintentional byproduct of overemphasis on some core principles of FCC rather than a weakness of the FCC model per se.²⁵ In our experience, this occurs implicitly and yet frequently in clinical practice for a multitude of interrelated reasons. FCC requires open communication and values the patient and family's preferences to allow the facilitation of a trustful therapeutic relationship.²⁶ Parents have a prima facie right, ethically and legally, to make decisions for their child as long as those decisions do not cause significant harm to the child.²⁷ However, the tipping point at which ‘family-centred-care’ becomes ‘family-directed-care’ is poorly defined. So discerning what level of assertive ‘advocacy’ should be tolerated from families who are under significant stress, can pose difficulties in a culturally and ethically pluralistic environment.²⁸

Indisputably, the decisions and behaviour of HCPs may generate further family stress, both acutely and chronically.¹⁴ Recent guidelines for Family-Centred-Care in Neonatal, Paediatric and Adult ICUs recognise that models of care and clinical interactions can often be improved to provide better for the needs of family.¹³ We endorse evidence-based approaches and communication styles proven to improve family support. These include incorporating patient and family perspectives with co designed and co-produced models of care²⁹ and prioritising family breaks and sleep. Improving communication strategies both interpersonal and written.¹³ And the need for continuity of care and messaging to carers has led to calls for a designated, or continuity care intensivist for sick children when multiple specialties are involved.³⁰ These practices should be championed in paediatric health care settings, as initial optimal family support is always preferable to manage expectations and pre-empt communication breakdowns. Nevertheless, supportive care strategies should not necessitate undue tolerance of behaviours that result in psychological distress to HCPs.⁴

Defining the continuum of behaviours

PICU HCPs regularly encounter a spectrum of challenging family behaviours.¹¹ Families have varying emotional and personality styles, as do clinicians²⁵ and these characteristics profoundly influence behavioural responses, particularly in high-stress situations.¹⁴ Of note, we stipulate labelling only behaviours themselves as challenging to avoid negative attribution to the person or family themselves. We recognise, as is well described in the literature, that the spectrum of ‘triggers’ for challenging behaviour is broad, and includes acutely or chronically stressed parents with critically unwell children and families who have lost trust or been under supported by the healthcare system.³¹ In some cases, family members may have underlying mental health issues, for example, a personality disorder, which may affect their interpersonal communication when under stress.³² More training in dialectical behaviour therapy approaches, for instance, may assist staff to acknowledge and validate the emotion (not the behaviour) and manage emotional lability consistently.³³ Although families may use and tolerate emotive communication styles outside the PICU, such expression can potentially be damaging to PICU HCPs and to other patients and families experiencing their own healthcare journey.

At the worst end of the spectrum, HCPs occasionally experience physical and verbal abuse or direct threats. Although extremely aggressive behaviours are rare, they exist on a continuum with behaviours that may be more insidious and variably tolerated. Delineating a transition point from understandable and acceptable stress responses to an unacceptable and damaging threshold can be difficult. Teams may only recognise that behavioural lines have been crossed in retrospect. Identifying and maintaining consistent behaviour limits is difficult, as the parent or carer is not the patient, and paediatric healthcare fundamentally relies on parents and carers collaborating with HCPs and being reasonable surrogate decision makers for their children.^34,35

One of the most detrimental behaviours encountered is recurrent, (in) direct, subthreshold or passive-aggressive behaviour towards staff. This can indicate unremitting anxiety and includes parent/carer hypervigilance, microaggression and repeated impedance of standard care. In other instances, families may target and criticise certain staff at the bedside, make derogatory comments about care to other families, or overtly favour some staff over others. Other passive-aggressive behaviour signals may include refusing consent to procedures such as routine blood tests, imaging or other daily tasks essential to patient care. This behaviour can persevere despite increased support and HCPs providing ongoing clinical rationale in an effort to maintain the therapeutic relationship^4,13,31 (Example case Box 1).

Harms arising from challenging relationships

In understanding and acknowledging the harms generated by such negative behaviours, the obligation to address them becomes apparent. If the trustful therapeutic relationship between parents and the PICU team breaks down, this generates harm to the patient, their family, staff and the institution (Table 1). We argue that harms to patients and families have been well characterised in the literature^13,21 but the harms to staff less so. Consequently, management strategies have inadequately accounted for the needs of valued staff.

Table 1.

Harms arising from conflict and challenging behaviour in paediatric healthcare settings.

Patients	Families	HCPs/staff	Institutions
Reduced time for clinical assessment and management due to time spent managing conflict.	Inequitable care to other patients due to the time-consuming nature of challenging family behaviours	Increased moral distress from struggling with conflictual and complex cases	Increased reputational damage to health institutions if negative comments are widely shared online or via social media.
Limiting of clinical encounters with the child or ‘clustering cares’ due to conflict avoidance.	Loss of trust in the therapeutic relationship due to adversarial interactions: potentially affecting the child's current and future care	Increased psychological stress due to excessive scrutiny or criticism from family members	Increased inter and intra disciplinary division within the institution as complaints are registered.
Increased risk of clinical errors and adverse events when staff experiencing incivility perform sub-optimally	Increased stress and anxiety for parents who feel unable to leave the bedside	Feelings of disempowerment due to inability to manage challenging behaviours resulting in compassion fatigue, burnout and professional compromise. Increased cognitive bias in clinical reasoning Negative ‘labelling’ of particular carers.	Reduced trust in the institution and the care teams by other community patient cohorts Potentially inequitable institutional responses.

HCP: health care professional.

Unmanaged aggression causes substantial harm.⁵ A parent who demonstrates aggressive interpersonal behaviours has a particularly damaging effect on staff with less hierarchical authority⁶ and criticism and complaints take a particular toll on nursing and junior medical staff. Simulation studies of NICU teams exposed to moderate rudeness showed significantly decreased team performance.³⁶ Parental scrutiny of staff undertaking a child's care may increase the likelihood of error by reducing higher cortical functioning, resulting in the phenomenon of ‘choking under pressure’.³⁷

Trained HCPs in PICU generally have high-level communication skills and value clinical characteristics such as compassion, fortitude and resilience; so seemingly unfounded criticism of their care is anathema. Repetitive negative interactions may therefore result in increased staff burnout, stress leave or the loss of highly trained PICU staff.^12,38 Championing civility in healthcare and addressing the cumulative detriment of incivility is key. The ‘Civility Saves Lives’ UK program promotes mutual respect, on the premise that ‘civil work environments’ decrease medical errors, stress and improve patient outcomes.³⁹

Finally, while long-stay patients are all eventually discharged from the PICU, HCPs must remain to continue their critical and demanding work. Losing and replacing highly trained staff is costly, hence there are both ethical and resource-sparing imperatives to prioritise the physical and psychological safety of HCPs.⁴⁰

Proportionate responses to challenging behaviours

Following a literature review and recent clinical experiences with harmful sequelae, we propose that approaches focused solely on FCC principles not only have equivocal evidence¹⁹ but do not sufficiently and systematically address the harms to staff from challenging behaviours. Although the appropriate response to physical threat or violence is documented in most institutional policies, verbal aggression is far less straightforward to manage.

Adopting solutions that promote the needs of staff along with those of patients and families requires mutually clarifying safe boundaries for all parties and shifting a culture of sometimes excessive tolerance within an FCC model. Formulating such solutions is not straightforward due to the individual nature of each patient and family circumstance and variations in HCP's approach.⁴¹ We argue that along with active efforts to improve communication and engage parents and carers in mutually agreed and openly articulated goals, the following strategies should be more embedded in organisational policy and PICU staff education and practice.

Early recognition and managing expectations

Effective early communication about a child's clinical trajectory, mutual goals and potential setbacks will benefit most families. Recognising avoidance behaviour, from both clinicians and families, as well as parental hypervigilance or ‘micromanagement’ is essential.⁴¹ Active trust building can increase resilience in therapeutic relationships, particularly where there is a history of prior distrustful healthcare interactions. Psychosocial engagement and trauma-informed support from social work, psychological medicine, and relevant pastoral care if accepted by families is invaluable.⁴² A concurrent integrated palliative care approach may be appropriate for children with clinical deterioration and a life-limiting condition.^41,43 Clinical ethics consultation (CEC) also has a role in scenarios where ethical values are in tension⁴⁴ and may help air diverse perspectives and improve outcomes in PICU.^45,46 Facilitated mediation (FM) with a professional external mediator to ameliorate bias and perceived conflicts of interest may also be a useful pathway at this stage.^47,48

Some international paediatric institutions have proposed a system of ‘red flags’ to pre-emptively identify characteristics predictive of conflict.¹⁶ This approach recommends early identification of behaviours like immutable reasoning or ‘magical thinking’ and communication avoidance. This may provide opportunity for exploration of the family's values and preferences and assist to deescalate conflict.⁴ Drawbacks of an early identification approach however, include the risk of labelling parents as ‘difficult’ and exacerbating an adversarial dynamic. Additionally, equity issues are raised by any approach requiring a higher investment of HCP resources; with time spent managing behaviourally, rather than clinically complex patients and families.

A graded response to behaviours, limit setting and mediation

Once challenging family behaviours are recognised, a cohesive early response is essential. A suite of tools for identifying apposite supports and setting clear limits may include the use of a graded response matrix or a validated conflict prevention and management framework.^5,49 This enables staff to recognise nascent (micro)aggression and levels of developing conflict, and to institute appropriate strategies at each level to prevent escalation.^44,49 This should be done with ongoing family support – utilising clear, empathic communication styles.^50,51

Both CEC and/or specialised mediation^52,53 can assist by addressing conflict and elucidating unconscious values in clinical decision making.^44,46,54 Interest-based or FM is the type most commonly utilised in healthcare and can offer a voluntary, transparent process with a neutral facilitator to identify and promote the common interests of both parties. FM is now recommended in many health government and institutional guidelines in cases of disagreement, along with seeking a second opinion^55,56 FM aims to shift both parties’ entrenched views towards a focus on mutually identified goals such as the child themselves and to develop sustainable agreements or behaviour contracts. Bioethics mediation differs in nuanced yet significant ways from CEC. Although the latter strives to infuse ethical considerations into ‘ought’ questions in healthcare decision-making, the former aims for neutrality, confidentiality and self-determination of the parties.⁵⁷ These approaches intersect and can offer iterative, complementary processes to improve health outcomes.⁵³ Justice Francis in summation of the Gard case reiterated this saying ‘I recognise, of course, that negotiating issues such as the life or death of a child seems impossible… However, it is my clear view that mediation should be attempted in all cases such as this one even if all that it does is achieve a greater understanding by the parties of each other's positions.’

This highlights the importance of training for staff in conflict resolution, de-escalation of aggressive behaviour, and timely mediation services, which have shown benefit in particular paediatric contexts.^6,43,58

Setting tolerance limits for staff protection

Protecting staff from challenging family behaviours is essential to maintaining a healthy, functioning workplace. In our experience, a proactive approach involving ongoing supportive communication with staff and setting agreed and supported thresholds has been well received. Early recognition of ‘empathy fatigue’ and moral distress, while providing opportunities for multidisciplinary discussion in regular team huddles can mitigate these effects and power differentials in decision-making.³⁸ Senior clinician support for limit setting and communication of this to families is essential; identification of unacceptable behaviour should be followed by discussions with family to establish expectations and limits such as a conditional entry, which protects healthcare settings and staff. Social work and psychological medicine support for HCPs experiencing distress associated with family engagement should also be offered early to alleviate vicarious trauma effects.⁵⁹

‘Last resort’ management strategies

The exclusion of a parent or carers from the bedside of their critically unwell child should be a last resort. However, in cases of repeated passive or active threats, hostility or verbally abusive treatment of staff, it may form a necessary component of behaviour agreements. These may include conditional visitation, security engagement or a ‘code black’ (a designated institutional conflict or threat code).⁶⁰ Medico-legal support and child protection unit advice is necessary if the child is at risk of serious harm from carer behaviour or requests for increasingly non-beneficial treatment.⁶¹

Our recommendation is for clearly designated and communicated consequences, and proportional periods of exclusion in response to specific behaviours. This should be transparently and respectfully articulated and agreed in writing with involved family members by the medical and nursing team leads. Family support should be ongoing, and patient complaint pathways offered to parents in parallel. Subsequent reintroduction to the unit is based on the re-establishment of trust with delineation of acceptable (and unacceptable) behaviour. Imposing conditional entry restrictions requires support from hospital executive and timely utilisation of hospital security services and should be clearly but neutrally documented in the electronic medical record. HCPs need to be empowered and educated to use appropriate services judiciously to minimise disruption to other patients and families.

Executive institutional support

Enactment of any or all these strategies requires strong leadership, communication and collaboration as well as endorsement of the defined limits by institutional administration. The PICU leadership team requires clear stepwise policies and guidance from hospital executives to implement conditional entry agreements. Direct contact between clinical governance executive and families may be necessary to reinforce the limits set by the PICU. And in parallel to explore family concerns or complaints impartially. It is important to guard against interdisciplinary or institutional ‘splitting’ and ensure all clinical and administrative levels are aligned with regards to the clinical goals and the child's best interests.

Conclusion

We have proposed a reappraisal of the cultural responses to challenging parent and family behaviour in the PICU to clarify its impact on staff and FCC outcomes. We outline potential management and evidence-based strategies grounded in recent clinical experience. We have highlighted the emotional responses of parents who have sick children in an unfamiliar medical environment to delineate the boundary between ‘anticipated’ or acceptable and aggressive or unacceptable behaviours, as the latter results in defined harms. This area of critical care is gathering more evidence-based research to identify links to patient safety and medical error resulting from incivility, but more is required.⁶² Our intention is to clarify and reject pejorative values that may be subconsciously at play; and rather promote an evolved model of FCC. Delineating stressors for all stakeholders within the PICU may assist other units and institutions to address this issue explicitly. We argue this is a necessary first step in developing strategies that ensure safety for children, families and staff alike. The strategies proposed, when applied consistently, aim to enhance the complex PICU journey of the child and family while protecting valuable staff. More broadly they aim to promote pluralism, solidarity and a positive ethical environment in the PICU.

Box 1:

A compound clinical case vignette highlighting a spectrum of challenging behaviours

A three-month-old infant with mitochondrial disease is invasively ventilated after presenting with a respiratory tract infection. The infant is now unable to be weaned from ventilation due to neurological deterioration. Recognising the family's anxiety and grief, staff offer social work and psychology support but this is strongly rejected. In further attempts to build trust and provide support, staff allow the mother to remain and sleep at the bedside overnight, although this is not unit policy. The child's mother becomes increasingly hypervigilant and is frequently critical of bedside nursing staff's abilities when performing routine care. The mother also refuses standard recommended investigations; the child's neurologist advises a repeat MRI of the brain; however, the mother refuses the transport required for this investigation due to concerns that this will induce further neurological injury. Several times each week, she requests new experimental investigations and treatments be added to her child's care, each of which the treating intensivist assesses and discusses with her. On several occasions, she becomes verbally aggressive (swearing and raising her voice) to nursing, junior medical staff and the ward clerk. This is witnessed by other children and families in the unit, with resulting complaints. After six weeks in intensive care, multiple nursing staff each shift are requesting not to be allocated to this patient. One staff member has taken extended stress leave after feeling repeatedly ‘berated’ by the patient’s mother. Managing equitable care for all patients in the unit becomes challenging.

Footnotes

Acknowledgements

The authors thank Prof. David Isaacs for reviewing this paper and giving valuable feedback. The authors thank Prof. Clare Delaney for discussing the ethics of conflict in healthcare settings and sharing graded strategies.

Author contributions

Both authors contributed to all aspects of manuscript preparation, including literature review, initial drafting and all revisions to develop final manuscript.

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.

ORCID iDs

Shreerupa Basu

Anne Preisz

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