Table 1

Included articles in the systematic review (ordered by date)

AuthorCountryTarget participantsNo.MethodologyAimsOutcomesThemesLimitationsRecommendations
Hefferman et al14USANICU staff
  • Nurses—initial survey

  • Nurses—second survey

  • Neonatologists

  • Respiratory care supervisor

  • Advanced practice nurses (Level III NICU)

98
24
67
3
1
3
Two qualitative surveys—convenience sample—spaced two months apart
  • To explore ethical dilemmas healthcare professionals faced and describe the impact, if any, such dilemmas had on their care or sense of self as healthcare providers

  • Explore whether dilemmas elicit moral distress

  • Expressed moral distress raises more questions regarding resuscitation and treatment of infants born at ‘edge of viability’

  • Difficult dilemmas can bring about moral distress in healthcare professionals

  • Advancing technology

  • Disproportionate care

  • Medical hierarchy

  • Decision-making

  • Survey sought ‘ethical dilemmas’ and the term was used interchangeably with moral distress

  • Initial survey results made available to all staff prior to second survey

  • Unknown response rate

  • Unclear aims and methodology

Those experiencing moral distress need to ‘be given a voice’ in the decision-making process
Solomon et al11USAMultidisciplinary paediatric staff in PICUs, medical, surgical or haematology/oncology units.
Overall response rate 64% (54%–71% across sites)
  • attending physicians

    • PICU attending physicians

  • ‘house officers’

  • nurses

    • PICU nurses (3 Children's hospitals and 4 general hospitals with PICUs)

781
209
25
116
456
267
  • Quantitative questionnaire, population based

  • Based on the Decisions Near the End of Life Institutional profile

  • To determine the extent to which a variety of healthcare professionals are in agreement with one another and with published ethical recommendations regarding the withholding and withdrawing of life-sustaining therapies and the role of parents in end-of-life decision-making

  • To determine the extent to which healthcare professionals are concerned with problems of overtreatment

  • 80% of critical care physicians and 69% of critical care nurses reported acting against their conscience and ‘saving children who should not be saved’

  • 56% of critical care physicians and 32% of critical care nurses reported feeling that sometimes the treatment they offer children is overly burdensome

  • Conscience

  • Burdensome care

  • 64% response rate

  • Did not have a probability-based sample of institutions

  • Healthcare professionals working solely in neonates were excluded

  • More research on regard for the dead-donor rule

  • More ethics education required

  • More interdisciplinary and cross-subspecialty discussion of inherently complex and stressful paediatric end-of-life cases

Janvier et al12Canada
  • Nurses,

  • Residents (University centre, high-risk obstetric service, maternity hospital NICU, outborn NICU)

115
164
Quantitative questionnaire, population basedTo determine the frequency of ethical confrontations (using a moral distress definition explicitly described) and factors associated with increased frequency
  • Moral distress was experienced by 35% of nurses and 19% of residents

  • Ethical confrontations are influenced by knowledge levels regarding outcomes of preterm infants (more moral distress when inaccurate knowledge)

  • Ethical confrontations are more frequent where there is more cultural diversity.

  • Ethical confrontations

  • Knowledge

  • Attending physicians not included

  • Limited definition of ethical confrontations

  • Only examined overtreatment and not undertreatment component of moral distress

  • Ethical confrontation may be unavoidable and beneficial when approached critically and discussed as a team

  • Further studies to equip trainees and healthcare workers with the tools to examine confrontations, to learn from, and profit from them

Catlin et al27USACritical care nurses
  • Neonatal

  • Paediatric

66
53
13
  • Pilot

  • Mixed methods, convenience sample

  • Multiple choice and open-ended surveys

To verify the clinical use of their concept of conscientious objection in cases of moral distressAnalysis of conscientious objection use in neonatal and paediatric nursing care
  • Ambivalence towards technology

  • Futility

  • Powerlessness

  • Fear of consequences

  • Defining conscientious objection

  • Is conscientious objection merely voicing a difference of opinion or refusing to follow through?

To direct research towards interventions ‘that will prevent futile care as well as to protect and defend nurses from the pain of powerless and participation in such cases that appear to harming patients’
Lee and Dupree18USAPICU staff
(multidisciplinary)

(Single centre PICU)
29
  • Qualitative descriptive study, population based

  • Semi-structured interviews

To describe the experiences of PICU healthcare professionals caring for a child who dies and to determine whether healthcare professionals experienced moral distressGrief was more prominent as a response than moral distress
  • Communication

  • Accommodating wishes of others

  • Ambiguity about technology use

  • Grief

  • Emotional support

  • Interviewed until saturation of themes but small sample of 8 patients

  • Enrolled after deaths; ?appropriate timing

  • Greater moral distress associated with patients that are thought to have received disproportionate care

  • Communication; interventions to improve availability of physicians to parents

  • Emotional support for staff

Cavaliere et al4USARNs
n=196 (48% response rate)

(2 level III NICUs)
94
  • Quantitative, descriptive, correlational study, convenience sample

  • MDSNPV (Moral distress scale—paediatric version)

To describe moral distress of RNs working in NICUs and to identify the situations associated with their moral distress
  • Moral distress, as identified by MDS was infrequent and low intensity

  • Mean intensity scores for top 10 distressing situations ranged from 1.71 to 3.18

  • Following family wishes to continue when not in child's best interest caused greatest moral distress

  • Continuing at family's wishes despite not ‘best interest’ of patient

  • Powerlessness

  • Analysis limited to items within MDS

  • Homogenous demographics of nursing staff

  • More studies required using the MDSNPV to refine tool

  • Exploration of more heterogenous populations to aid generalisability

McGibbon et al15CanadaPICU nurses

(Paediatric hospital)
23
  • Qualitative study, theoretical sampling

  • Institutional ethnography

  • In-depth interviews, participant observation and focus groups

To reformulate the nature of stress in nursing with attention to contextual aspects of nursing
  • Nurses’ stress is very much related to the social relations of power which may lead to moral distress

  • Formulations of nursing stress (including moral distress) must reflect the dynamics between the nurse, the environment and surrounding relationships and hierarchies

  • Emotional distress

  • Burden of responsibility

  • Constancy of presence

  • Bodily caring?

  • Being mothers, sisters, daughters and aunts

Convenience sample rather than reaching saturation of themesConceptualisations of nurse’ stress including occupational, moral distress and traumatisation require further contexualisation
Lawrence21USARNs n=98 (14% response rate)
  • NICU n=90 (8%)

  • PICU n=62 (18%)

  • MICU n=46 (22%) (3 ICUs)

28
7
11
10
  • Quantitative, descriptive, correlation study, convenience sample

  • Demographic Data Collection Tool

  • UWES

  • MDS (in part)

  • CRPQ

  • RRQ in part

To examine how nurses’ moral distress, education level and CRP related to work engagement
  • Negative direct relationship between moral distress and CRP. Positive direct relationship between CRP and work engagement

  • An increase in RN education is associated with increase CRP (in NICU)

  • Education

  • Workplace engagement

  • Moral distress

  • CRP

  • 14% response rate

  • Convenience sample

  • CRPQ not standardised

  • Only the ‘not in the best interest’ frequency subscale (7 items) was used limiting the scope of MD examined

  • Strategies to promote CRP and reduce moral distress are recommended, to promote work engagement

  • Further studies required on the role of education in nurses’ work engagement recommend

Sannino et al17ItalyNurses
n=472 (86% response rate)

(15 level III NICUs)
406
  • Quantitative, cross-sectional questionnaires, convenience sample

  • MDSNPV-Italia

  • To evaluate the frequency, intensity and level of moral distress experienced by nurses working in NICUs

  • To assess whether nurses working in NICUs with >/=1000 deliveries/year experience a higher frequency, intensity and level of moral distress than nurses working in NICUs <1000 deliveries

  • Low moral distress rate as measured by MDS. Initiating care when felt futile ranked highest cause of moral distress

  • No association between the number of deliveries in a centre and the moral distress of nurses

  • ‘Aggressive’ use of technology without perceived benefit

  • Honouring parental decision-making

Sample limited to Northern ItalyFurther studies required in neonatal context
Molloy et al16CanadaNurses

(Tertiary academic referral hospital)
15
  • Qualitative interviews, convenience sample

  • Secondary analysis of data

To increase understanding of moral distress experienced by nurses involved in the decision-making regarding resuscitation of neonates at the margins of viability (<25+6 weeks)Nurses perceive a lack of power and influence in the neonatal resuscitation decision-making process
  • 5 themes contribute to moral distress

  • Uncertainty

  • Questioning informed consent

  • Differing perspectives

  • Harm and suffering

  • Being with the family

  • Secondary analysis- analysis limited to original data

  • Only 15 respondents

  • Provide staff with coping mechanisms

  • Engage more effective communication strategies

  • Additional research on why nurses feel helpless in decision-making

Sauerland et al7 (Part II)USANurses working in NICU/PICU and intermediate care settings
n=152 (35% response rate)

(Academic safety net hospital—provides significant service to lower socioeconomic population)
53
  • Quantitative questionnaires, convenience sample

  • MDSNPV

  • Olson's HECS-S

To explore perceptions of moral distress, moral residue and ethical climate among registered nurses
  • PICU and NICU nurses experience less moral distress than those in adult ICUs

  • Greatest distress caused by inadequate staffing, incompetent staff, performing unnecessary tests and treatments and continuing life support when not in child's best interest

  • Work climate was ranked as moderately ethical

  • Work climate

  • Moral distress

  • 35% response rate

  • Single site

  • Lack of differentiation between NICU/PICU nurses and involvement in critical care vs intermediate setting

Intervention studies that address moral distress at the individual, intraprofessional/interprofessional environment and hospital policies
Trotochaud et al19USAMultidisciplinary paediatric healthcare providers
  • NICU nurses

  • NICU other

  • PICU nurses

  • PICU other Overall response rate ranged from 26.3% for physicians across all departments to 40.9% for nurses across all departments) (3 Children's hospitals)

1113

84
38
79
47
  • Quantitative descriptive study, convenience sample

  • MDS-R

  • Survey questions on demographic and intent

  • To determine the degree of moral distress experienced by paediatric providers from different professional groups and working in different clinical settings

  • To describe the relationship of moral distress to paediatric provider intent to leave

  • To identify situations more likely to be associated with paediatric provider moral distress

  • Both physicians and nurses experience moral distress (percentage, describe)

  • ‘Aggressive’ burdensome end-of-life care not considered appropriate is commonly associated with moral distress

  • Moral distress

  • ‘Aggressive treatment’

  • Teamwork

  • <30% response rate across all paediatric and neonatal professionals

  • Responses from single organisation

Strategies that help providers recognise morally distressing situations when experienced
Wall et al20CanadaMultidisciplinary
  • dieticians,

  • respiratory therapist

  • social worker

  • nurses,

  • physicians,

  • medical resident (multicentre PICUs)

16
3
1
1
7
3
1
  • Qualitative interviews and focus groups, convenience sample

  • Secondary analysis

To explore organisational influences on moral distress for healthcare professionals working in PICUsIndividual experience, ethical climate and organisational structures are intertwined in creating moral distress
  • Relationships with management, organisational structure and processes

  • Workload and resources

  • Team dynamics

  • Small sample size with limited generalisability.

  • Secondary analysis—moral distress was not a focus of the original interview questions

Further exploration of the impact of organisational structures on moral distress is required
  • CRP, critical reflective practice; CRPQ, critical reflective practice questionnaire; HECS-S, hospital ethical climate survey; ICU, intensive care unit; MDS, moral distress scale; MDS-R, moral distress scale revised; MICU, medical intensive care unit; MDSNPV, moral distress scale neonatal-paediatric version; NICU, neonatal intensive care unit; PICU, paediatric intensive care unit; RN, registered nurse; RRQ, reflection-rumination questionnaire; UWES, Utrecht work engagement scale.