Table 3.

Data extraction table.

Qualitative
Author(s) country	Study aim (s)	Sample	Research design	Analysis	Key findings	Limitations
Henderson, et al.,44 Australia	To identify what paediatric healthcare professionals consider important when preparing for an EOL discussion.	Convenience sample n = 36 Medical, Nursing, AHP	Group interview	Descriptive content analysis	Themes identified: communication, healthcare professional perspectives, interdisciplinary team role, patient and family perspectives, practical issues, addressing mistakes, and healthcare professional education.	All participants had means to post anonymous comments but not all spoke at the interview. Results are from staff in one Australian state. Data saturation may not have been attained.
					Conflict makes it more difficult.
					Acknowledging own anxiety and the uncertainty of each and every case.
					Timing has to be right for the family rather than health professionals
					Ask the parents: ‘‘are you ready to have this conversation about. . .’’
					Ensure private environment.
Hiscock and Barclay,45 United Kingdom	To investigate views and experiences of health professionals on discussions about advance care planning with teenagers and young adults with life-limiting neuromuscular diseases.	Health professional in adult and child health (6 different professions within neuro, respiratory, general and pall care).	Nine 1:1 Semi-structured interviews	Thematic content Analysis	Who: Those health professionals with long-term relationship with parent are best.	Small sample size with a wide range of health professionals
					Where: Home best.
					When: Progression of disease was the main factor for initiation but this was problematic as resulted in delay and therefore less time for discussions.
					Barriers: Parent/patient not ready/block discussion. Health professional themselves not ready. Organisational factors such as transition. Indicators for starting discussions such as cues and questions from patient/family or their answers to health professionals cited.
					Although deterioration in NMD follows a predictable pattern there was no agreed consensus with health professional re advance planning.
Jack et al.,46 United Kingdom	To explore health care professionals’ views and experiences of paediatric advance care planning in hospitals, community settings and hospices	Purposive sample n = 21. Dr, Nurses, AHP, Bereavement, C/A, Midwives	Naturalistic interpretative design. Semi-structured interviews.	Thematic Content Analysis	Themes identified:	Sample only included professionals who had been directly involved in the end-of-life care of children during the specified time frame.
					The timing of planning conversations, including waiting for the relationship with the family to form; the introduction of parallel planning; avoiding a crisis situation.
					Supporting effective conversations around advance care planning, including where to have the conversation; introducing the conversation; and how to approach the topic encompassing the value of advance care planning and documentation for families.
					How to introduce the conversation was an important consideration for the participants. Example was given of how they approach families to initiate paediatric advance care planning conversations when a child is showing signs of deterioration and another emphasised the emotional value of the advance care planning process for the family. Picking up family readiness cues was noted.as part of timing the initiation of paediatric advance care planning.
Lotz et al.,24 Germany	To investigate the attitudes and needs of health care professionals with regard to paediatric advance care planning	Purposeful sampling n = 17 Doctors, Nurses, Social health professional	1:1 Semi-structured interviews	Qualitative content analysis MAXQDA-10 software	Perceived as helpful by providing a sense of security and control, improving quality of care and ensuring respect of patients’ and parents’ wishes.	The convenience sample of health professionals which was known to the researcher may have biased the results. The area in which may have resulted in an overly advanced view of the current paediatric advance care planning practice and health professionals’ attitudes toward paediatric advance care planning which would make the study difficult to replicate in less advanced areas.
					Problems identified related to professionals’ discomfort and uncertainty regarding end-of-life decisions and advance directives.
					Timing – Identified early initiation of paediatric advance care planning shortly after diagnosing an incurable condition, but this was recognised as unrealistic in many cases and that family’s readiness was important.
					Specific times to initiate – such as discharge at home or a severe deterioration of the child’s condition were indicated.
					Paediatric advance care planning was noted to be an individualised process with continuity of staff qualified to facilitate, the need for multi-professional meetings and for professional education all requirements.
					Difficulties identified: health professional discomfort with paediatric advance care planning, unclear responsibilities, uncertain prognoses, difficulties in initiation, problems identifying the child’s wishes, the burden for parents, paediatric advance care planning document limitation, uncoordinated communication and insufficient implementation within health care system.
Mitchel and Dale,15 United Kingdom	To explore the experiences of senior medical and nursing staff regarding the challenges associated with Advance Care Planning in relation to children and young people with life-limiting illnesses in the Paediatric Intensive Care Unit environment and opportunities for improvement.	Purposeful sampling n = 14 Consultants and senior nursing staff.	1:1 Semi-structured interviews	Thematic Content Analysis	Themes identified: Recognition of an illness as ‘life-limiting’; paediatric advance care planning as a multi-disciplinary, structured process; the value and adverse consequences of inadequate paediatric advance care planning and additional difficulties of advance care plan at transition points.	Conducted within one PICU in England and included a relatively small number of participants.
					Benefits: Opportunity to make decisions regarding end-of-life care in a timely fashion and in partnership with patients, where possible, and their families.
					Barriers: Recognition of the life-limiting nature of an illness, illness trajectory and gaining consensus of medical opinion as key barriers to initiating paediatric advance care planning. The multidisciplinary, dynamic nature of the process, time constraints, conflicting clinical demands and lack of formal training in communication skills were also barriers and specific to the PICU setting, a lack of established rapport with the family was identified as a problem.
Zaal-Schuller et al.,47 Netherlands	To investigate the experiences of the parents and the involved physician during the end-of-life decision-making (EoLDM) process for children with profound intellectual and multiple disabilities (PIMD).	Various recruitment strategies n = 14 Doctors and parents of children with PIMD.	1:1 Semi-structured interviews	Qualitative data analysis software, MaxQDA	Themes identified: The influence of previous healthcare encounters, Anticipation and timing of the EoLDM process, Provision of information and advice, Reasons for disagreement, Contributions to decision-making, The final decision maker.	Fathers’ perspective is lacking. Recall bias is possible.Parents could have a more positive view about the EoLDM process if their child was still alive.In cases of disagreement doctors responded broadly making the comparison between the experiences of parents and physicians more difficult.Generalizability limited as only Dutch hospitals studied.
					Facilitators: Relationship with the family which Physicians put a lot of effort into to achieve and maintain. Parents knowledge of the medical conditions and their experiences with treatments during previous critical illnesses which was recognised by doctors as Parents of children with PIMD being experts and allowed more influence in decision-making.
					Barrier: Previous negative healthcare experience. Many physicians had an idea about how parents felt about EoLD, they found it very difficult to identify when parents were ‘ready’ to discuss these decisions. Uncertain prognosis and unforeseen complications. Parents’ difficulties fully understanding information. Parents wishing for ‘everything to be
					Done, even treatments considered futile and the opposite.
					Both parents and physicians preferred a shared decision-making approach though there were differences in the understanding of what SDM was.
					Disagreements were not uncommon but strengthened the decision-making process as they were discussed.
					Timing: Acute deterioration
					Reviewed if improvement/deterioration and at annual reviews
Quantitative
Author(s) country	Study aim (s)	Sample	Method	Analysis	Results	Limitations
de Vos et al.,48 Netherlands	To investigate how Dutch paediatric specialists, reach end-of-life decisions, how they involve parents, and how they address conflicts.	N = 138 Medical specialists’ paediatric intensivists, oncologists, neurologists, neurosurgeons, and metabolic paediatricians	National cross-sectional survey.45 Questions.	SPSS – Significance level of .05 used.	End-of-life decision discussed with colleagues before discussing it with parents. Initiate discussion re LST pre-crisis situations. 25% use local guidelines. Initiated by the medical team in 75% of the cases in 4% by the parents, and in 21% by both.Decision making Paternalistic half – parents informed and asked, ¼ Parents informed but not asked for their permission. 1/4 advised parents and they decided. The chosen approach is highly influenced by type of decision and type and duration of treatment. Conflicts within medical teams arose as a result of uncertainties about prognosis and treatment options. Most conflicts with parents arose because parents had a more positive view of the prognosis or had religious objections to treatment discontinuation. All conflicts were eventually resolved by a combination of strategies.	Number was low for a national survey. Results are the opinions of respondents, not on direct observations. Only Doctors’ perspective.
Durall,27 USA	To identify barriers to conducting advance planning discussions for children with life-threatening conditions	E-mail invitations n = 266 Doctors and Nurses ICU areas and oncology in two Children’s hospitals.	Electronic Survey – 148 questions derived from clinician and parental focus groups. De novo and existing questions. Pilot tested.	SPSS. Pearson χ2, Mann–Whitney U tests.	Response rate 54%.	Limited generalisability as only Doctors and nurses from three departments within one hospital. Participation may have been influenced by experience. Patient and parental perspectives not studied.
					Timing: 71% of clinicians believed that ACD typically happen too late.
					92% believed that a discussion regarding overall goals of care should be initiated upon diagnosis or during a period of stability. 60% reported that these discussions typically take place during an acute illness or when death imminent.
					Who: Only 1% of clinicians believe that patients or their parents should initiate ACD; the majority felt that responsibility rests with one of the patient’s physicians or advance practice nurses.
					Barriers: Unrealistic parent expectations, differences between clinician and patient/parent understanding of prognosis, and lack of parent readiness to have the discussion. Nurses identified lack of importance to clinicians and ethical considerations as impediments more often than physicians. Physicians believed that not knowing the right thing to say was more often a barrier. There are also perceived differences among specialties. Cardiac ICU providers were more likely to report unrealistic clinician expectations differences between clinician and patient/parent understanding of prognosis as common barriers to conducting ACD.
Forbes,49 Australia	To better understand current attitudes and practices relating to discussions concerning the withholding and withdrawing of life-sustaining medical treatment (WWLSMT) among medical staff in the paediatric setting.	N+ 385 Doctors and Medical Students.	Anonymous online survey	SAS	Response rate 42%.	One Hospital in one state. Response rate was only 42.1% of which 50% were junior Doctors.
					Majority of Junior Doctors are uncomfortable discussing WWLST.
					Experience led to more comfort in WWLST discussions with clinical acumen, communication skills and the observation of more senior colleagues also rated highly. Confidence in having WWLST discussions correlates with experience.
					Most learned through experience and by observing more senior colleagues, with 58% of Junior and 35.8% of Senior staff having no specific communication training regarding WWLSMT.
					Barriers: concerns about family readiness for the discussion, prognostic uncertainty, family disagreement with the treating team regarding the child’s prognosis/diagnosis and concerns about how to manage family requests for treatments that are not perceived to be in the child’s best interests.
Harrison et al.,50 USA	To understand communication among health care professionals regarding death and dying in children.	N = 133 Nurses, Doctors Psychosocial Clinicians. One USA Hospital.	Survey – paper. Doctors – 24 items, nursing – 27 items, psychosocial – 56 items.	Spearman’s correlation, a Multivariate Analysis of Variance (MANOVA) and Analysis of Variance (ANOVA)	Response rate 90%. Comfort in discussions: Health care professionals who felt comfortable discussing options for	There may have been Selection bias as participants had the option to participate – those more likely to be interested in this topic would participate. Potential recall bias. Including the parents’ perspective absent. Definition of previous training could have been clearer.
					end of life care with colleagues also felt more comfortable: initiating a discussion regarding a child’s impending death with his/her family discussing options for terminal care with a family, discussing death with families from a variety of ethnic/cultural backgrounds,guiding parents in developmentally age-appropriate discussions of death with their children, identifying and seeking advice from a professional role model regarding management concerns, or interacting with a family following the death of a child.
					Who: Doctors were more likely and were more comfortable than other staff to initiate discussions.
					Training: Health care professionals that received formal grief and bereavement training were more comfortable discussing death.
Kruse et al.,51 USA	To evaluate the extent to which paediatric providers have knowledge of code status options and explore the association of provider role with (1) knowledge of code status options, (2) perception of timing of code status discussions, (3) perception of family receptivity to code status discussions, and (4) comfort carrying out code status discussions.	N = 263 nurses, trainees, and Doctors	Cross-sectional survey. Hard copy. Instrument contained 10 items	SAS	Response rate 90%. Knowledge of code status (resuscitation) options was consistently low – which differed to perceived knowledge of which Doctors perceiving themselves as having the greatest knowledge.	One site, which may limit the generalisability of findings.Provider’s perspective only; no study of patient/parent perspectives. Study did not look at differences in specialities and differences in stage of experience/training not accounted for.
					Comfort. 58.2% of Doctors have the highest comfort level when discussing code status. Nurses and trainees were similar.
					Family receptivity to discussions – Doctors and trainees perceive families to be more receptive to discussions than nurses do.
					Timing: Nurses perceive Timing of discussions to be too late (63.4%) and most Doctors (55.6% feel they are timed right with none thinking they are too late.
Sanderson et al.,25 USA	To identify clinician attitudes regarding the meaning, implication, and timing of the DNR order for paediatric patients.	E-mail invitations n = 266 Doctors and Nurses ICU areas and oncology in two Children’s hospitals.	Electronic Survey – 148 questions derived from clinician and parental focus groups. De novo and existing questions. Pilot tested.	SPSS. Pearson χ2, Mann–Whitney U tests.	Response rate 54%.	Study involved clinicians from only three departments within one hospital, therefore, may have limited generalisability. No patient and parental perspectives.
					Timing: There is a defined difference between what health professional believe is the correct time to initiate DNR discussions, n = 99 at presentation and n = 79 when stable as opposed to what is happening in practice acute illness n = 80 or when death imminent n = 131. Most clinicians reported that resuscitation status discussions take place later in the illness course than is ideal.
					Barriers: unrealistic parent expectations (39.1%), lack of parent readiness to have the discussion (38.8%), and differences between clinician and patient/parent understanding of the prognosis (30.4%) were identified as most common.
					There was substantial variability in the interpretation of the DNR order. Most clinicians (66.9%) believe that a DNR order indicates limitation of resuscitative measures only on cardiopulmonary arrest. In reality, more than 85% believe that care changes beyond response to cardiopulmonary arrest, varying from increased attention to comfort to less clinician attentiveness.
Basu and Swil,11 Australia	To assess physicians’ experiences and education regarding paediatric advance care planning. To assess barriers to advance care plan initiation, including the adequacy of exposure and education regarding advance care planning and whether practitioners would deem improved education and resource provision useful.	N = 93 Paediatricians, intensivists and advanced trainees	Electronic Survey	Microsoft Excel	Patients with life-limiting conditions are encountered frequently, with 57% of respondents caring for at least 10 such patients during the last 2 years.	Small sample size and a single hospital site may reduce generalisability.
					Who: 46% felt that multidisciplinary teams were the most appropriate to initiate advance care plan discussions
					Barriers: Prognostic uncertainty and lack of experience and education were identified as barriers by 43% and 32%, respectively. Personal clinician factors and relationships with families.
					Training: Exposure to ADVANCE CARE PLAN and education during training inadequate
					Time: 64% of respondents felt that ADVANCE CARE PLAN discussions should occur early around the time of diagnosis or during a period of stability; however, 57% observed discussions occurring late in illness after multiple acute, severe deteriorations.
Bradford,52 Australia	To define optimal components of an early paediatric palliative care consultation.	n = 19 Medical physician, Nursing, Allied health	Delphi study	Percentage frequencies and Standard deviation	Response rate 19.	Response rate – low for survey but appropriate in a Delphi study. No accepted benchmark for consensus. Only experts from Australia and New Zealand.
					Priorities: establish rapport with the family, establishing the family’s understanding of palliative care; symptom management; an emergency plan; discussion of choices for location of care, and a management plan. Components considered suitable to defer to later consultations, or appropriate to address if initiated by family members, included: spiritual or religious issues; discussion around resuscitation and life-sustaining therapies; end-of-life care; and the dying process.
Non-research
Author(s) country	Author details	Content		Main information relating to review – Limitations are that it is the authors view although based on experience and often research papers.
Harrop,53 United Kingdom	Health professionals from one UK Children’s Hospice and two bereaved mothers who used advance care planning provide their views. Research to back up practice and experience.	Professional and user information – Authors share experiences, in the context of national guidance on the use of advance care plans.		Advance care planning influences the treatment received and improved their experience of care. Recognised as a difficult area of practice for healthcare professionals. Health professional and families appear to benefit when the process is fully informed, and the child and family are actively involved. Honesty about area of clinical uncertainty and an understanding of the dilemmas faced both by clinicians and families are most likely to lead to a successful outcome both for the advance care plan and ultimately for the care agreed within it.
				Time – When it best suits the family, but it depends on diagnosis. Sometimes it is clear – e.g. change in goals. increasing intercurrent illnesses.
				How – Warning shot, time to think, additional resources e.g. leaflet, blank advance care plan documentation.
Haynes et al.,54 United Kingdom	Dr’s and Nurse in Neurodisability and PPC	Step by step guidance on introducing and creating paediatric advance care planning’s for child with severe disabillity		Increase number of LL/LT children dying in pICU. The importance that the family should have a paediatric advance care planning document with emergency care plan which has (i) Emergency plans, (ii) wishes for EOL and non-medical choices. Who: A trusted health professional well known to child and family. Prerequisites: Early identification of the life limiting condition, open discussion regarding prognosis, acknowledgement of uncertainty, parallel planning, early introduction to PPC services, paediatric advance care planning preferences. Preparation by health professional: Clear knowledge of condition and treatment. Discussion with other health professional involved. Introduction of paediatric advance care planning ‘idea’ to family. Suggested phrases. Options available and discussions on these. Information on EOL, death and following death preferences. How the document should be agreed, updated and shared and how to approach non-agreement.
Mack and Joffe.,55 USA	Two medical doctors based in Paediatric Haematology and Oncology.	Considers communication about prognosis in the context of the patient–clinician relationship which in paediatrics is unique due to the tripartite relationship of parent, child, health professional.		Health professional perceptions – That prognostic information will cause patients emotional distress, take away hope.
				Could be inaccurate, may cause the patient to ‘give up’ and that some patients do not want to know what is ahead. Some believe that those from minority racial or ethnic backgrounds may be less likely to want prognostic information.
				How – honest and supportive conversation. Doctors who face considerable prognostic uncertainty can begin conversations by using language that is open to multiple possible outcomes long before acute deteriorations necessitate urgent decision-making.
				Time – Doctors often do not know when to initiate paediatric advance care planning discussions particularly when dealing with uncertain prognosis. Life limiting illnesses are diverse and often have long, waxing and waning courses, paediatricians’ opinions about the optimal timing of referrals to palliative care vary widely, potentially fostering divergent practices in discussing prognosis. Inexperienced with communication about end-of-life care, which may lead to delays in conversations about prognosis and care preferences.
Pao and Mahoney,56 USA	Psycho-oncology Doctor and Research Assistant.	Paper comments on the preparation, rationale, and benefits of paediatric advance care planning discussions in a developmentally sensitive manner with adolescents with LL/LT conditions.		Health professionals must look at their own readiness to engage by taking a self-inventory, learning communication skills, and understanding individual barriers.
				Talking with adolescents who have a life-threatening or life-limiting illness is one of the most difficult tasks a health care provider (health professional) can undertake.
				Adolescents want to be included in medical decision-making through the illness trajectory including making decisions around end-of-life.
				Prognosis is not necessary before initiating advance care planning discussions.
				Time: not easy to know when is best to initiate advance care plan conversations with patients and families. Balancing act between the adolescent’s readiness and that of their family’s and, separately, the health professional’s readiness.
				Suggested timing questions for health professional.
				Readiness assessment probing by asking adolescents whether end-of-life conversations would be helpful or upsetting, and if they feel comfortable discussing preferences when treatment options become limited.
Sidgwick et al.,57 United Kingdom	Paediatric Intensive care (pICU) & Paediatric palliative care (PPC) Doctors	Parallel planning in paediatric critical care		Repeated admissions to pICU of LL children with often death whilst receiving critical care. Acknowledges difficulty in initiation. Who – Identifying right competent trusted professional a challenge. Learn by observing experienced colleagues. Advocates more children with LLCs should be offered parallel planning before pICU admission but acknowledges that often parents not ready to make decisions or change their mind in a crisis.
Tsai et al.,58 Canada	Physicians and Ethicists	Position statement on advance care planning in children. To assist health care practitioners to discuss advance care planning for paediatric patients in varied settings.		Health professionals should educate themselves to be comfortable initiating discussion. Advance care planning is part of the standard of care. Wishes regarding emergency and life-sustaining therapies should be documented
				Who: Health professional responsibility to initiate these discussions.
				When: Should occur early and regularly before crises arise, and as the goals of care are clarified or change over time.
Wiener et al.,59 USA	Psycho-oncology Doctor and Research	Commentary on progress in the area. Focuses on how healthcare professionals can approach advance care planning (advance care plan) with adolescents and young adults (AYA), involve their family members, and engage the entire health care team.		How: Assess advance care plan discussion readiness. Tailor to the individual needs of the AYA and family.
				Time: AYA and family must acknowledge that cure may not be possible. When in relatively stable health and willing to engage in conversations about future treatment and lack of future treatment.
				Who: Member of the healthcare team who has the confidence and trust of the AYA and their family and who understands the specific psychosocial needs. Doctors, by nature of their role, are uniquely responsible for relaying bad news.
				Preinitiation: family must acknowledge that cure may not be possible. They also need to be amenable to explore the AYA’s thoughts, preferences, and/or goals.
				Barriers: providers feeling unprepared or without adequate skills to guide EOL discussions,
				Health professional perceptions: parental concern that discussing plans, including life support options or presenting an EOL planning document may send the message that the medical team wishes to withdraw care or that death is imminent.