. 2022 Feb 7;111(4):716–732. doi: 10.1111/apa.16248

TABLE 1.

Baseline characteristics

Author Year Country	Aim of the study	Study design Method of data collection	Setting	Sample Deceased subjects	Content of the conversations	Parents' experiences	HCPs' experiences	Quality appraisal
Brink et al. (2017) DK	To identify parents’ experience of a follow‐up meeting and to explore whether it was adequate to meet the needs of parents for a follow‐up after their child's death in the PICU.	Generic qualitative study. Semi‐structured interviews 2—12 weeks after the follow‐up conversation.	University Hospital, Pediatric Intensive Care Unit (PICU)	Parents (n = 10) attending a follow‐up meeting 4–8 weeks after the death of their child Children (n=6) who died in the PICU with a variety of causes of death	‐ Information: Discuss various topics and, provide answers, give a causal explanation after a unexpected death. ‐ Emotional support: Discuss how parents are dealing/coping, staff showing emotions. ‐ Feedback: Parents want to provide feedback in order to improve practice.	‐ Nervousness and tension before but all pleased to have participated. Opportunity to enhance grieving process. ‐Emotional involvement from HCP’s enables better coping. ‐ Closure of the course in the PICU. Helps to find encouragement to grieve. ‐Meaningful that the meeting was interdisciplinary; attention for treatment and care ‐ Experienced no time pressure ‐ Important that HCPs involved in the meeting were those who had been present through hospitalisation and the time of the child's dead since this felt safe for them. ‐ Regarding location: stressful to return, helpful to revisit, felt as a ‘second home'. Mostly willing to return to the hospital		21 out of 32
Eggly et al. (2011) USA	To describe the development of a framework to assist paediatric intensive care unit physicians in conducting follow‐up meetings with parents after their child's death. .	Generic qualitative study. Telephone interviews 3–12 months after the death of a child	Seven academic tertiary care children's hospitals participating in the National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN), Pediatric Intensive Care Unit (PICU)	A framework for follow‐up meetings based on the experience/perspectives of parents (n = 56) of children who died in an CPCCRN PICU and PICU attendings and fellows (n = 70) practising or training at a CPCCRN site Children (n=48) who died in a CPCCRN affiliated PICU.	‐ The framework is a general set of principles adaptable to the specific context of each family's circumstances. ‐ Balance of different aspects based on the parents’ needs. ‐ Opportunity for parents to express their thoughts and feelings and identify their issues. ‐ Gaining information: Chronological course of the illness and provided treatment, the last hours of life and risks for the surviving children should be discussed using understandable terminology. ‐ Assess how parents are coping so professional referrals can be made. ‐ Parents need to gain reassurance that both the family and the medical team did everything they could to prevent the child's death. ‐ Parents want an opportunity to provide feedback regarding the care. ‐Meetings should be multidisciplinary so varying needs can be addressed. ‐ Meetings should be with the HCPs who cared for the child.		‐Felt the meetings were beneficial to parents and to themselves. ‐ Benefits for them: a better understanding of parents’ perspectives, an opportunity to increase skill and experience to assist future families, a chance to reconnect with families and find out how they are coping, an opportunity to reach closure and professional gratification. ‐ Benefits may seem trivial, but may serve to counteract burnout and compassion fatigue.	11 out of 32
Eggly et al. (2013) USA	To examine physicians conceptualisation of closure as a benefit of follow‐up meetings with bereaved parents	Generic qualitative study. Semi‐structured telephone interviews.	Seven academic tertiary care children's hospitals participating in the CPCCRN, Pediatric Intensive Care Unit (PICU)	Paediatric critical care physicians and fellows (n = 67) practising or training at a CPCCRN clinical centre and conducting follow‐up meetings with bereaved parents. Children who died in a CPCCRN affiliated PICU.	HCPs and parents should: ‐ Review details of the death ‐ Discuss new information ‐ Address new or lingering questions	Parents can move towards closure by: ‐ Gaining a better understanding of the causes and circumstances of the child's death ‐ Considering the child's end‐of‐life in retrospect ‐ Reconnecting or resolving relationships with HCPs. ‐ Gaining reassurance that HCPs did everything possible relieves parental quilt and increases trust in the medical team ‐ Providing feedback; allows them to contribute their experiences as information that would ultimately improve care for others ‐ Moving on and accepting the reality of dead; the follow‐up meeting is a point in time from which parents can move on.	‐ Some HCPs feel the word ‘closure’ does not accurately reflect the concept they want to describe. HCPs can move towards closure by: ‐ Reconnecting with families; Want to see how parents are coping. ‐ Further exploring the causes and circumstances of the death ‐ Fulfilling professional duty; their work is not complete until they provide parents with final explanations. .	19,5 out of 32
Granek et al. (2015) CA	To examine follow‐up practices employed by paediatric oncologists after patient death.	Generic qualitative study. Interviews	Two paediatric hospitals, Pediatric Oncology Department	Paediatric oncologists (n = 21) conducting follow‐up practices with bereaved families. Children who died from cancer.	‐ Parents and HCPs can talk about what had happened. ‐ Parents can ask any lingering questions. ‐ Parents want to hear that everything possible was carried out for their child.	‐ The follow‐up meetings can be a beginning of the process of slowly disconnecting from the HCPs that were a major part of their lives for so long and who they may have felt close to.		16,5 out of 32
McHaffie et al. (2001) SCO	To explore parents’ experiences of bereavement care after withdrawal of newborn intensive care	Generic qualitative study. Semi‐structured face‐to‐face interviews	Three neonatal referral centres, Neonatal Intensive Care Unit (NICU)	Parents (n=108) attending a follow‐up appointment after newborn intensive care was withhold/ withdrawn. Neonates/infants (n = 62) who died after treatment withholding / withdrawing in newborn intensive care.	Full frank information: ‐ Should be given sensitively so parents can build a clear picture of what happened and assess their future risks. ‐ Should answer parents’ questions. ‐ Should be understandable for parents in order to learn and accept the facts. ‐ Reassurance about what had been done, the decision and future risks needs to be given where possible, but no false reassurance. ‐ Sharing memories and experiences is important for emotional support. ‐Care and respect for the whole family is ensured.	‐ Wanting to find out how the parents are coping is of great value. ‐ Showing compassion and understanding, communicating effectively and demonstrating a personal interest was appreciated. ‐ Multidisciplinary is important because it is a burden to go to multiple separate follow‐up appointments. ‐ Appreciated an unhurried approach. ‐ Should be with the neonatologist who had cared for the baby before the death. ‐ Prefer to be seen soon after the death. Early contact is desirable since parents want to piece together a coherent picture in order to make progress in their grieving, to assess the risks of recurrence or the genetic implications and to contemplate another pregnancy. ‐ Revisiting the hospital can be painful.	‐ Barriers in conducting follow‐up conversations can be: workload, resources, availability of support from colleagues.	12 out of 32
Meert et al. (2007) USA	To investigate parents’ perspectives on the desirability, content, and conditions of a physician‐parent conference after their child's death in the PICU	Generic qualitative study. Audio‐recorded telephone interviews 3–12 months after the death of a child.	Seven academic tertiary care children's hospitals in the National Institute of Child Health and Human Development CPCCRN PICU	Parents (n = 56) attending a physician‐parent conference after their child's death in a CPCCRN affiliated PICU. Children (n = 48) who died in a CPCCRN affiliated PICU.	Parents should: ‐ Gain information about their child's illness and death. Topics: chronology of events, cause of death, treatment, autopsy, genetic risk and steps towards prevention, medical documents, withdrawal of life support, ways to help others, bereavement support and what to tell family. ‐ Be able to seek emotional support. Reassurance they did everything they could. Sense that HCPs still care about them. ‐ Be able to voice complaints, provide feedback and express gratitude. Improve care for other families.	The most important component is the provision of information. ‐ Difficult to comprehend information at the time of the child's demise. ‐ Highest in importance related to treatment and cause of death. ‐ Review of the sequence of events to make sense of what happened. ‐ Medical records and autopsy reports can increase the understanding. ‐ Appreciate the follow‐up meeting being with the HCPs who had close relationships with their child. ‐ The majority is willing to return to the hospital and want to meet within the first three months. ‐ Early enough to have any benefit, not too soon cause parents need to be able to comprehend was is being said. Some wanted to meet earlier, others wanted to wait until the distress of acute grief had begun to subside.		20 out of 32
Meert et al. (2011) USA	To investigate critical care physicians experiences and perspectives regarding follow‐up meetings with parents after a child's death in the PICU	Generic qualitative study. Semi‐structured, audio‐recorded telephone interviews.	Seven academic tertiary care children's hospitals in the National Institute of Child Health and Human Development CCCRN, PICU.	Critical care physicians (n = 70) practising or training at a CPCCRN clinical centre. Children who died in a CPCCRN affiliated PICU.	Elements of the meetings: ‐ Providing information (past and new information available) ‐ Emotional support (family coping, providing reassurance and expressing condolences) ‐ Receiving feedback ‐ Informational topics included: autopsy, questions, hospital course, cause of death, genetic risk, bereavement services, and legal or administrative issues. ‐ Discuss whatever the family wants to discuss	‐ Desire a follow‐up meeting with the HCP(s) who cared for their child. ‐ Benefits of the meetings included: an opportunity to ask questions and gain information, closure, reassurance, reconnection with staff, talk through feelings, professional referrals and greater trust in the healthcare team.	‐ Majority perceived that follow‐up meetings were beneficial to parents and themselves. ‐ Some report no benefit for themselves, the follow‐up meetings just allows them to fulfil their professional obligations to parents. ‐ The same HCPs desire to consider the meetings on a ‘case‐by‐case’ basis because there is a need for emotional protection. ‐ Benefits included: understanding of parents’ perspectives, opportunity to increase skill and experience assisting families, reassurance, reconnection with families, closure and professional gratification. ‐ Barriers included time and scheduling, parents and physician unwillingness, distance and transportation, language and cultural issues, parents’ anger and lack of a system for meeting initiation and planning. ‐ Logistic barriers can be overcome. Personal barriers are more prohibitive. ‐ The majority participated in follow‐up meetings that were located at the hospital and occurred within 3 months after death. ‐ Need for flexibility in timing: meet when families are ready and autopsy results are available.	.18 out of 32
Meert et al. (2014) USA	To evaluate the feasibility and perceived benefits of conducting physician‐parent follow‐up meetings after a child's death in the PICU according to a framework developed by the CPCCRN	Observational study. Video‐recorded follow‐up meetings using the CPCCRN framework and evaluation surveys completed by parents and critical care physicians.	Seven academic tertiary care children's hospitals in the National Institute of Child Health and Human Development CPCCRN, PICU	Follow‐ up meetings (n = 36). between bereaved parents (n = 50) and critical care physicians (n = 36). Children (n = 194) who died in a CPCCRN affiliated PICU.		‐ Most parents find the meeting helpful and think it will help them cope in the future. ‐ The following aspects are the most helpful: The opportunity to gain information, receive emotional support, provide feedback, honest, unhurried and nonthreatening style of communication. ‐ Most parents could understand the information.	‐ Were willing to be trained to use the structured CPCCRN follow‐up meeting framework. ‐ The majority thinks that the meeting is beneficial to parents and to themselves. ‐ HCPs benefited by: reconnecting with parents, gaining a deeper understanding of parents’ perspectives and achieving a sense of closure ‐ Most of the HCPs find the framework easy to use	23,5 out of 32 .
Meert et al. (2015) USA	To identify and describe types of meaning‐making processes that occur among parents during bereavement meetings with their child's intensive care physician after their child's death in a PICU	Secondary data analysis of an observational study, Video‐recorded follow‐up meetings using the CPCCRN framework.	Seven academic tertiary care children's hospitals in the National Institute of Child Health and Human Development CPCCRN, PICU.	Follow‐up meetings (n = 35) between bereaved parents (n = 53). Children (n = 35) who died in a CPCCRN affiliated PICU.		Four major meaning‐making processes were identified: 1. Sense making: Seeking biomedical explanations, revisiting prior decisions and roles, and assigning blame. Explain why they made the decisions they did, and sought reassurance from HCPs that the best decisions had been made 2. Benefit finding: Exploring positive consequences of the death, including ways to help others, such as giving feedback to the hospital, making donations, participating in research, volunteering and contributing to new medical knowledge and donating organs. 3. Continuing bonds: Parents’ ongoing connection with the deceased child manifested by reminiscing about the child. Parents recalled actions of HCPs that showed dignity and respect for the child. 4. Identity reconstruction: Changes in parents’ sense of self, including changes in relationships, work, home and leisure.	‐ May facilitate meaning‐making processes by providing information, emotional support and an opportunity for feedback.	22 out of 32
Midson et al. (2010) UK	To explore the experiences of parents with end‐of‐life care issues in a tertiary treatment centre.	Generic qualitative study. A survey about parents’ experiences during an interview.	A tertiary treatment hospital, PICU +Neonatal Intensive Care Unit (NICU), Cardiac Critical Care Unit (CCCU) and other wards	Parents (n = 28 families) attending a follow‐up visit after the death of their child. Children between 3 days and 17 years old who died in a tertiary treatment centre		‐ Some found that the follow‐up visit was helpful in explaining and answering questions. ‐ Other parents were left with unanswered questions and felt frustrated if further research did not answer their questions. ‐ Other parents felt that the follow‐up conversations made them re‐live the whole experience and left them with a lot of questions. ‐ Some parents were not ready for the follow‐up meeting but kept the contact details for later.		16,5 out of 32

Author

Year

Country

Aim of the study

Study design

Method of data collection

Setting

Sample

Deceased subjects

Content of the conversations

Parents' experiences

HCPs' experiences

Quality appraisal

Brink et al. (2017)

To identify parents’ experience of a follow‐up meeting and to explore whether it was adequate to meet the needs of parents for a follow‐up after their child's death in the PICU.

Generic qualitative study.

Semi‐structured interviews

2—12 weeks after the follow‐up conversation.

University Hospital, Pediatric Intensive Care Unit (PICU)

Parents (n = 10) attending a follow‐up meeting 4–8 weeks after the death of their child

Children (n=6) who died in the PICU with a variety of causes of death

‐ Information: Discuss various topics and, provide answers, give a causal explanation after a unexpected death. ‐ Emotional support: Discuss how parents are dealing/coping, staff showing emotions. ‐ Feedback: Parents want to provide feedback in order to improve practice.

‐ Nervousness and tension before but all pleased to have participated. Opportunity to enhance grieving process.

‐Emotional involvement from HCP’s enables better coping.

‐ Closure of the course in the PICU. Helps to find encouragement to grieve.

‐Meaningful that the meeting was interdisciplinary; attention for treatment and care

‐ Experienced no time pressure

‐ Important that HCPs involved in the meeting were those who had been present through hospitalisation and the time of the child's dead since this felt safe for them.

‐ Regarding location: stressful to return, helpful to revisit, felt as a ‘second home'. Mostly willing to return to the hospital

21 out of 32

Eggly et al. (2011)

USA

To describe the development of a framework to assist paediatric intensive care unit physicians in conducting follow‐up meetings with parents after their child's death.

Generic qualitative study.

Telephone interviews 3–12 months after the death of a child

Seven academic tertiary care children's hospitals participating in the National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN), Pediatric Intensive Care Unit (PICU)

A framework for follow‐up meetings based on the experience/perspectives of parents (n = 56) of children who died in an CPCCRN PICU and PICU attendings and fellows (n = 70) practising or training at a CPCCRN site

Children (n=48) who died in a CPCCRN affiliated PICU.

‐ The framework is a general set of principles adaptable to the specific context of each family's circumstances.

‐ Balance of different aspects based on the parents’ needs.

‐ Opportunity for parents to express their thoughts and feelings and identify their issues.

‐ Gaining information: Chronological course of the illness and provided treatment, the last hours of life and risks for the surviving children should be discussed using understandable terminology.

‐ Assess how parents are coping so professional referrals can be made.

‐ Parents need to gain reassurance that both the family and the medical team did everything they could to prevent the child's death.

‐ Parents want an opportunity to provide feedback regarding the care.

‐Meetings should be multidisciplinary so varying needs can be addressed.

‐ Meetings should be with the HCPs who cared for the child.

‐Felt the meetings were beneficial to parents and to themselves.

‐ Benefits for them: a better understanding of parents’ perspectives, an opportunity to increase skill and experience to assist future families, a chance to reconnect with families and find out how they are coping, an opportunity to reach closure and professional gratification.

‐ Benefits may seem trivial, but may serve to counteract burnout and compassion fatigue.

11 out of 32

Eggly et al. (2013)

USA

To examine physicians conceptualisation of closure as a benefit of follow‐up meetings with bereaved parents

Generic qualitative study.

Semi‐structured telephone interviews.

Seven academic tertiary care children's hospitals participating in the CPCCRN, Pediatric Intensive Care Unit (PICU)

Paediatric critical care physicians and fellows (n = 67) practising or training at a CPCCRN clinical centre and conducting follow‐up meetings with bereaved parents.

Children who died in a CPCCRN affiliated PICU.

HCPs and parents should:

‐ Review details of the death

‐ Discuss new information

‐ Address new or lingering questions

Parents can move towards closure by:

‐ Gaining a better understanding of the causes and circumstances of the child's death

‐ Considering the child's end‐of‐life in retrospect

‐ Reconnecting or resolving relationships with HCPs.

‐ Gaining reassurance that HCPs did everything possible relieves parental quilt and increases trust in the medical team

‐ Providing feedback; allows them to contribute their experiences as information that would ultimately improve care for others

‐ Moving on and accepting the reality of dead; the follow‐up meeting is a point in time from which parents can move on.

‐ Some HCPs feel the word ‘closure’ does not accurately reflect the concept they want to describe.

HCPs can move towards closure by:

‐ Reconnecting with families; Want to see how parents are coping.

‐ Further exploring the causes and circumstances of the death

‐ Fulfilling professional duty; their work is not complete until they provide parents with final explanations.

19,5 out of 32

Granek et al. (2015)

To examine follow‐up practices employed by paediatric oncologists after patient death.

Generic qualitative study.

Interviews

Two paediatric hospitals, Pediatric Oncology Department

Paediatric oncologists (n = 21) conducting follow‐up practices with bereaved families.

Children who died from cancer.

‐ Parents and HCPs can talk about what had happened.

‐ Parents can ask any lingering questions.

‐ Parents want to hear that everything possible was carried out for their child.

‐ The follow‐up meetings can be a beginning of the process of slowly disconnecting from the HCPs that were a major part of their lives for so long and who they may have felt close to.

16,5 out of 32

McHaffie et al. (2001)

SCO

To explore parents’ experiences of bereavement care after withdrawal of newborn intensive care

Generic qualitative study.

Semi‐structured face‐to‐face interviews

Three neonatal referral centres, Neonatal Intensive Care Unit (NICU)

Parents (n=108) attending a follow‐up appointment after newborn intensive care was withhold/

withdrawn.

Neonates/infants (n = 62) who died after treatment withholding / withdrawing in newborn intensive care.

Full frank information:

‐ Should be given sensitively so parents can build a clear picture of what happened and assess their future risks.

‐ Should answer parents’ questions.

‐ Should be understandable for parents in order to learn and accept the facts.

‐ Reassurance about what had been done, the decision and future risks needs to be given where possible, but no false reassurance.

‐ Sharing memories and experiences is important for emotional support.

‐Care and respect for the whole family is ensured.

‐ Wanting to find out how the parents are coping is of great value.

‐ Showing compassion and understanding, communicating effectively and demonstrating a personal interest was appreciated.

‐ Multidisciplinary is important because it is a burden to go to multiple separate follow‐up appointments.

‐ Appreciated an unhurried approach.

‐ Should be with the neonatologist who had cared for the baby before the death.

‐ Prefer to be seen soon after the death. Early contact is desirable since parents want to piece together a coherent picture in order to make progress in their grieving, to assess the risks of recurrence or the genetic implications and to contemplate another pregnancy.

‐ Revisiting the hospital can be painful.

‐ Barriers in conducting follow‐up conversations can be: workload, resources, availability of support from colleagues.

12 out of 32

Meert et al. (2007)

USA

To investigate parents’ perspectives on the desirability, content, and conditions of a physician‐parent conference after their child's death in the PICU

Generic qualitative study.

Audio‐recorded telephone interviews 3–12 months after the death of a child.

Seven academic tertiary care children's hospitals in the National Institute of Child Health and Human Development CPCCRN PICU

Parents (n = 56) attending a physician‐parent conference after their child's death in a CPCCRN affiliated PICU.

Children (n = 48) who died in a CPCCRN affiliated PICU.

Parents should:

‐ Gain information about their child's illness and death. Topics: chronology of events, cause of death, treatment, autopsy, genetic risk and steps towards prevention, medical documents, withdrawal of life support, ways to help others, bereavement support and what to tell family.

‐ Be able to seek emotional support. Reassurance they did everything they could. Sense that HCPs still care about them.

‐ Be able to voice complaints, provide feedback and express gratitude. Improve care for other families.

The most important component is the provision of information.

‐ Difficult to comprehend information at the time of the child's demise.

‐ Highest in importance related to treatment and cause of death.

‐ Review of the sequence of events to make sense of what happened.

‐ Medical records and autopsy reports can increase the understanding.

‐ Appreciate the follow‐up meeting being with the HCPs who had close relationships with their child.

‐ The majority is willing to return to the hospital and want to meet within the first three months.

‐ Early enough to have any benefit, not too soon cause parents need to be able to comprehend was is being said. Some wanted to meet earlier, others wanted to wait until the distress of acute grief had begun to subside.

20 out of 32

Meert et al. (2011)

USA

To investigate critical care physicians experiences and perspectives regarding follow‐up meetings with parents after a child's death in the PICU

Generic qualitative study.

Semi‐structured, audio‐recorded telephone interviews.

Seven academic tertiary care children's hospitals in the National Institute of Child Health and Human Development CCCRN, PICU.

Critical care physicians (n = 70) practising or training at a CPCCRN clinical centre.

Children who died in a CPCCRN affiliated PICU.

Elements of the meetings:

‐ Providing information (past and new information available)

‐ Emotional support (family coping, providing reassurance and expressing condolences)

‐ Receiving feedback

‐ Informational topics included: autopsy, questions, hospital course, cause of death, genetic risk, bereavement services, and legal or administrative issues.

‐ Discuss whatever the family wants to discuss

‐ Desire a follow‐up meeting with the HCP(s) who cared for their child.

‐ Benefits of the meetings included: an opportunity to ask questions and gain information, closure, reassurance, reconnection with staff, talk through feelings, professional referrals and greater trust in the healthcare team.

‐ Majority perceived that follow‐up meetings were beneficial to parents and themselves.

‐ Some report no benefit for themselves, the follow‐up meetings just allows them to fulfil their professional obligations to parents.

‐ The same HCPs desire to consider the meetings on a ‘case‐by‐case’ basis because there is a need for emotional protection.

‐ Benefits included: understanding of parents’ perspectives, opportunity to increase skill and experience assisting families, reassurance, reconnection with families, closure and professional gratification.

‐ Barriers included time and scheduling, parents and physician unwillingness, distance and transportation, language and cultural issues, parents’ anger and lack of a system for meeting initiation and planning.

‐ Logistic barriers can be overcome. Personal barriers are more prohibitive.

‐ The majority participated in follow‐up meetings that were located at the hospital and occurred within 3 months after death.

‐ Need for flexibility in timing: meet when families are ready and autopsy results are available.

.18 out of 32

Meert et al. (2014)

USA

To evaluate the feasibility and perceived benefits of conducting physician‐parent follow‐up meetings after a child's death in the PICU according to a framework developed by the CPCCRN

Observational study.

Video‐recorded follow‐up meetings using the CPCCRN framework and evaluation surveys completed by parents and critical care physicians.

Seven academic tertiary care children's hospitals in the National Institute of Child Health and Human Development CPCCRN, PICU

Follow‐ up meetings (n = 36).

between bereaved parents (n = 50) and critical care physicians (n = 36).

Children (n = 194) who died in a CPCCRN affiliated PICU.

‐ Most parents find the meeting helpful and think it will help them cope in the future.

‐ The following aspects are the most helpful: The opportunity to gain information, receive emotional support,

provide feedback, honest, unhurried and nonthreatening style of communication.

‐ Most parents could understand the information.

‐ Were willing to be trained to use the structured CPCCRN follow‐up meeting framework.

‐ The majority thinks that the meeting is beneficial to parents and to themselves.

‐ HCPs benefited by: reconnecting with parents, gaining a deeper understanding of parents’ perspectives and achieving a sense of closure

‐ Most of the HCPs find the framework easy to use

23,5 out of 32

Meert et al. (2015)

USA

To identify and describe types of meaning‐making processes that occur among parents during bereavement meetings with their child's intensive care physician after their child's death in a PICU

Secondary data analysis of an observational study,

Video‐recorded follow‐up meetings using the CPCCRN framework.

Seven academic tertiary care children's hospitals in the National Institute of Child Health and Human Development CPCCRN, PICU.

Follow‐up meetings (n = 35) between bereaved parents (n = 53).

Children (n = 35) who died in a CPCCRN affiliated PICU.

Four major meaning‐making processes were identified:

1. Sense making: Seeking biomedical explanations, revisiting prior decisions and roles, and assigning blame. Explain why they made the decisions they did, and sought reassurance from HCPs that the best decisions had been made

2. Benefit finding: Exploring positive consequences of the death, including ways to help others, such as giving feedback to the hospital, making donations, participating in research, volunteering and contributing to new medical knowledge and donating organs.

3. Continuing bonds: Parents’ ongoing connection with the deceased child manifested by reminiscing about the child. Parents recalled actions of HCPs that showed dignity and respect for the child.

4. Identity reconstruction: Changes in parents’ sense of self, including changes in relationships, work, home and leisure.

‐ May facilitate meaning‐making processes by providing information, emotional support and an opportunity for feedback.

22 out of 32

Midson et al. (2010)

To explore the experiences of parents with end‐of‐life care issues in a tertiary treatment centre.

Generic qualitative study.

A survey about parents’ experiences during an interview.

A tertiary treatment hospital, PICU +Neonatal Intensive Care Unit (NICU), Cardiac Critical Care Unit (CCCU) and other wards

Parents (n = 28 families) attending a follow‐up visit after the death of their child.

Children between 3 days and 17 years old who died in a tertiary treatment centre

‐ Some found that the follow‐up visit was helpful in explaining and answering questions.

‐ Other parents were left with unanswered questions and felt frustrated if further research did not answer their questions.

‐ Other parents felt that the follow‐up conversations made them re‐live the whole experience and left them with a lot of questions.

‐ Some parents were not ready for the follow‐up meeting but kept the contact details for later.

16,5 out of 32