Audio recordings of consultations with doctors for parents of critically sick babies

Koh THHG, Budge D, Butow P, Renison B, Woodgate P

Background - Methods - Results

Cover sheet

Title

Audio recordings of consultations with doctors for parents of critically sick babies

Reviewers

Koh THHG, Budge D, Butow P, Renison B, Woodgate P

Dates

Date edited: 16/11/2004
Date of last substantive update: 15/11/2004
Date of last minor update: 15/11/2004
Date next stage expected 30/09/2006
Protocol first published: Issue 4, 2003
Review first published: Issue 1, 2005

Contact reviewer

Dr Koh THHG Guan, MB, MA, FRCPCH, FRACP
Neonatologist
NICU
The Townsville Hospital
100 Angus Smith Drive
Townsville
Queensland AUSTRALIA
4814
Telephone 1: 0747962985
Facsimile: 0747962980
E-mail: guan_koh@health.qld.gov.au

Contribution of reviewers

THHG K was primarily responsible for this review and wrote the background. All reviewers contributed to the development of the protocol and BR played a key role in developing and performing the search startegies. Using a trial-inclusion checklist prepared by THHG K and PW, all reviewers agreed to independently assess identified trials according to the inclusion criteria stated in the protocol (study type, participants, intervention and outcomes). We planned that differences be resolved by consensus. THHG K and PW wrote the discussion and conclusions.

Internal sources of support

Centre for Clinical Studies - Women's and Children's Health, Mater Hospital, South Brisbane, Queensland, AUSTRALIA

External sources of support

Royal Children Hospital Foundation, AUSTRALIA
Department of Health and Ageing, Commonwealth Government, Canberra - Supporting the Centre for Clinical Studies, Mater Hospital, AUSTRALIA

What's new

Dates

Date review re-formatted: / /
Date new studies sought but none found: / /
Date new studies found but not yet included/excluded: / /
Date new studies found and included/excluded: / /
Date reviewers' conclusions section amended: / /
Date comment/criticism added: / /
Date response to comment/criticisms added: / /

Text of review

Synopsis

Synopsis pending.

Abstract

Background

Family centred care is an important part of neonatal intensive care. Ensuring effective communication in the neonatal intensive care unit (NICU) is a challenge but is crucial to the implementation of family centred care. Providing parents in NICU with audiotape recordings of their conversations with neonatologists could promote effective communication.

Objectives

The objective of this review was to assess the usefulness of providing parents of sick babies with audiotape recordings of their consultations with neonatologists.

Search strategy

The standard search strategy of the Cochrane Neonatal Review Group was used. This included searches of electronic databases: Oxford Database of Perinatal Trials, Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library Issue 3, 2004), and MEDLINE (1966 - February 2004); and previous reviews including cross references and expert informants. There were no language restrictions applied to the electronic searches. Hand searching of conference and symposia proceedings was restricted to the English language.

Selection criteria

Randomised or quasi-randomised trials of any form of providing parents of babies in NICU with audiotape recordings of their conversation with doctors in the NICU.

Data collection & analysis

Four reviewers independently assessed the eligibility of the trials.

Main results

Our searches did not identify any trials which met the eligibility criteria.

Reviewers' conclusions

There is no information available from randomised or quasi-randomised trials to demonstrate any benefits from providing parents in NICU with audiotape recordings of their conversations with neonatologists.

Background

National health organisations have advocated optimal communication and the open provision of information in the NICU in order to reduce parents' sense of vulnerability and loss of control (NHMRC 1996, Crown 2002). However, parents in a neonatal intensive care unit often find it difficult to understand, remember and adjust to information given to them (Perlman 1991; Jedlicka-Kohler 1996). Indeed one study found that some parents denied ever been spoken to by the specialists when the conversation actually did happen and was recorded on audio cassette tapes (Koh 1998). The lack of parental recall of the content of conversations with the doctors has also been documented when informed consent is sought from parents of NICU babies for participation of their babies in research (Rogers 1998).

Traumatic experiences such as the babies being on life support evoke intense emotions and depressed mood states. Empirical evidence shows that powerful negative emotions can disturb memory (Loftus 1982). Similar to adult patients other reasons for poor understanding by parents in NICU include poor communication techniques and lack of time in consultations, contradictory messages from different members of the team, poor health of the parents, parent denial, inexperience in terminology, unwillingness to ask questions because of the perception they are using up precious time of the doctors, and the lack of opportunity to review the information given (Tattersall 1994; Ley 1967).

Yet parents of sick babies are keen to know as much as possible about their baby's condition, treatment and likely outcome. Parents of babies in NICUs have written cogently about the need for family centred neonatal care (Harrison 1993) which recognises the parents and family as the constant in a child's life and empowers parents with support, respect and encouragement, thus enhancing their strength and competence. Neonatal teams have started to devise, implement and assess different family centred care strategies (Moore 2003; Saunders 2003). Indeed, society in general is becoming better informed about health, and a ground swell of support and government backing exists for the campaign being waged by consumer lobbies and patient organisations for better health information and for greater involvement in decision making. Parents like adult patients want honest, unbiased, up to date information about the illness of their sick babies, its likely outcome and the risks and benefits of different interventions (Richards 1998). It has been claimed that seventy to eighty per-cent of malpractice suits are the result of a breakdown in communication between doctor and patient (Lilienthal 1998).

Problems such as failure to provide information, poor communication, lack of time, contradictory messages and use of medical terminology could be attributed to the doctors. Although these are areas which might be improved if doctors also listened to the audio recordings of their conversations with parents, exploration of this is beyond the scope of this review.

Many authors have focused on the communication of bad medical news to identify favourable physician behaviour and good patterns of doctor-parent interaction (Scott 2004a). These authors have suggested that any intervention aimed to improve parent understanding needs to reduce anxiety, provide an opportunity for information review, be sensitive to patients' varying information needs, and be economical in cost and time, easy to use and non obtrusive. Oncologists and psychologists have shown that providing adult cancer patients with an audiotape of their consultation satisfies these criteria, and is effective in reducing anxiety and enhancing understanding of the diagnosis and treatment options, without increasing depression (Scott 2004a). Two observational studies in newborn babies suggest that it is practical to audiotape parents-neonatologists / paediatrician conversations and that parents seem to like this adjunct in communication (Koh 1998; Watkinson 1994).

The aim of this review is to determine whether there is evidence that provision of consultation audiotapes to parents in NICU is beneficial, and whether in the light of that evidence further clinical trials are warranted. This review will also consider trials of audio recordings made in the context of obtaining informed consent

Objectives

The primary objectives of this review were to determine the effects of providing parents in NICU with audio recordings of their conversations with neonatologists on information recall and understanding and psychological outcomes including postnatal depression, general health and anxiety state. We intended to investigate the role of neonatal variables (e.g. gestation, outcome), parental variables (e.g. age, marital status, parity, race) and intensity of intervention ( e.g. number of recordings) in modifying effects of the intervention.

Criteria for considering studies for this review

Types of studies

Randomised and quasi-randomised controlled trials of providing parents of babies in NICU with audio recordings of their conversation with doctors in NICU.

Types of participants

Parents of babies admitted to NICU. Parents of both single and multiple pregnancies were eligible. There were no restriction on postnatal age at entry.

Types of interventions

Providing parents of babies in NICU with audio recordings of their initial conversation with doctors in NICU and subsequent conversations considered significant by the doctors, e.g. discussion about conditions such as cerebral insults, seeking of informed consent. Control intervention would be no provision of audiotapes.

Types of outcome measures

One or more of the following outcomes must be reported.

The primary outcome is the usefulness of the tapes, grouped into three types of effect: use of tapes and information recall or understanding; experience of health care (including participation in subsequent consultations, complaints) and parental health and wellbeing. Data about participants' uses and opinions of their recordings and summaries were also extracted.

Secondary outcomes include impact of the tapes on psychological morbidity such as post natal depression, general health, anxiety state and coping / parenting ability of parents, controlling for baby well-being as defined by psychometric measures (post natal depression, anxiety, marital status, parenting skills) of the mothers at different periods in the postnatal period; and involvement of other family members as defined by the number of times the relatives used the audio-recordings.

Search strategy for identification of studies

The review drew on the search strategy for the Cochrane Neonatal Review Group. See: Cochrane Neonatal Group, Search strategy for specialised register in: The Cochrane Library, Issue 4, 2001.

A comprehensive search was undertaken by the reviewers including Oxford Database of Perinatal Trials, The Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library, Issue 3, 2004), OVID Pre-MEDLINE and MEDLINE 1966 to 15.6.04, EMBASE 1966 to 15.6.04, OVID CINAHL 1982 to 15.6.04, OVID PsycINFO 1966 to 15.6.04, Australasian Medical Index 1968 to 17.6.04, APAIS-Health 1978 to 14.6.04, Health and Society 1978 to 17.6.04, ISI Web of Science [citation index] 1992 to 16.6.04, ISI Current Contents 1992 to 26.7.04, Joanna Briggs Institute for Evidence Based Nursing and Midwifery 1996 to 23.7.0, OVID EBM Reviews ACP Journal Club 1991 to 23.7.04, PubMed 1966 to the present, Proquest Digital Dissertations 1966 to 26.7.04, New York Academy of Medicine/Academy Library/Grey literature (26.7.04) and Google for grey literature (accessed 26.7.04).

The search strategies for the major databases follow:

MEDLINE
1. neonatal intensive care unit
2. intensive care units, neonatal (MeSH - exploded)
3. neonatology (MeSH)
4. neonat$
5. newborn$
6. intensive care, neonatal (MeSH)
7. infant, premature (MeSH)
8. 1 or 2 or 3 or 4 or 5 or 6 or 7
9. family (MeSH - exploded)
10. mother$
11. father$
12. famil$ or parent$
13. professional-family relations (MeSH) or professional-family relations
14. 9 or 10 or 11 or 12 or 13
15. tape recording (MeSH - exploded)
16. tape recording$
17. audiotap$ or audio tap$
18. 15 or 16 or 17
19. communication (MeSH - exploded)
20. referral and consultation (MeSH - exploded)
21. consultation$
22. bad news
23. truth disclosure (MeSH - exploded)
24. 19 or 20 or 21 or 22 or 23
25. 8 and 14 and 18 and 24

CINAHL
1. neonatal intensive care unit
2. intensive care units, neonatal (MeSH)
3. neonatology (MeSH)
4. neonat$
5. newborn$
6. intensive care, neonatal. (CINAHL subject heading - exploded)
7. infant, premature (CINAHL subject heading)
8. 1 or 2 or 3 or 4 or 5 or 6 or 7
9. parents (MeSH - exploded) or parent$
10. mother$
11. father$
12. exp professional-family relations (MeSH) or professional-family relations
13. family (MeSH - exploded)
14. 9 or 10 or 11 or 12 or 13
15. audiorecording (CINAHL subject heading)
16. tape recording$
17. audiotap$ or audio tap$
18. 15 or 16 or 17
19. communication (CINAHL subject heading - exploded)
20. referral and consultation (CINAHL subject heading - exploded)
21. consultation$
22. bad news
23. 19 or 20 or 21 or 22
24. 8 and 14 and 18 and 23

Psycinfo
1. parents (Psycinfo subject heading - exploded) or parent$
2. mothers (Psycinfo subject heading - exploded) or surrogate parents (humans) (Psycinfo subject heading - exploded) or mother$
3. fathers (Psycinfo subject heading - exploded) or father$
4. professional-family relations
5. family (Psycinfo subject heading - exploded)
6. 1 or 2 or 3 or 4 or 5
7. audiotapes (Psycinfo subject heading)
8. tape recording$
9. audiotap$ or audio tap$
10. 7 or 8 or 9
11. professional consultation (Psycinfo subject heading - exploded)
12. consultation$
13. bad news
14. disclosure$
15. 11 or 12 or 13 or 14
16. 6 and 10 and 15

Bibliographies of identified studies were also checked and contact made with experts in the field as well as hand searching of abstracts and conference proceedings of the annual meetings of the Society for Pediatric Research (1990 to February 2004) and The European Society for Paediatric Research (1990 to February 2004). Publications in all languages were considered.

Methods of the review

The standard methods of the Cochrane Collaboration and its Neonatal Review Group were used. The five reviewers worked independently to search for and assessed trials for inclusion and methodological quality. Eligible studies were to be assessed using the following key criteria: blindness of randomisation, blindness of intervention, completeness of follow up and blinding of outcome measurement. A referee (Australasian Neonatal Review Group Co-ordinator) was to be sought for unresolved differences. Additional information were to be requested from the authors of trials, if necessary, in order to complete the trial assessment.

For each eligible trial we would perform the following systematic approach to produce a descriptive summary. Each author would extract data separately, then compared and resolved differences. Requests of the original investigators for additional data and information regarding definitions of outcomes were to be made where required. Standard methods of Cochrane Neonatal Review Group were to be used to synthesise the data. For individual trials, where possible, mean differences (and 95% confidence intervals) were to be reported for continuous variables. For categorical outcomes, the relative risk and risk difference (and 95% confidence intervals) were to be reported. For the meta-analysis, when appropriate, weighted mean differences (and 95% confidence intervals) were to be reported for continuous variables, and the relative risk and risk difference (and 95% confidence intervals) for categorical outcomes. A fixed effects model was to be used. Number needed to treat was to be calculated where appropriate.

For identified studies data we would extract on the nature and content of the conversations, the way in which the recording was delivered, and the interventions used in the comparison groups. Data were to be grouped broadly into three effect types: information recall or understanding; experience of health care (including participation in subsequent conversations, complaints etc.), and health and wellbeing. Data about participants' uses and opinions of the tapes were also to be extracted. Where available we would have performed subgroup analyses according to neonatal outcome (death, grade 3-4 intraventricular haemorrhage, periventricular leucomalacia) and maternal factors such as age, parity, race, assisted conception and marital status. Parents of multiple pregnancy were to be included but outcomes were to be reported as one per set of parents. If data were available, we would perform subgroup analysis for single versus multiple recordings in order to examine the effect of intensity of intervention. In the event of absence of quantitative data for a meta-analysis, a qualitative summary of outcomes would be presented.

To ensure that patient views and perspectives are represented in the review we contacted parents support through groups such as AUSTPREM and Preemie-L for their views.

Description of studies

We identified no studies which fulfilled the inclusion criteria nor any potentially eligible studies. The authors are currently completing a randomised trial of providing parents in a NICU with audiotapes of their conversations with neonatologists.

Methodological quality of included studies

Not applicable.

Results

Not applicable

Discussion

This review highlighted that there were no eligible studies concerning audiotaping of parents-neonatologist conversations. The searches were comprehensive, using both accepted search strategies and canvassing parent support groups including AUSTPREM and Preemie-L. Observational studies of parent-clinician encounters have demonstrated serious deficiencies in communication and high anxiety in clinical situations including perinatal death, impending preterm delivery, and the seeking of informed consent for enrolling babies in randomised clinical trials (Crowther 1995; Snowdon 1997; Zupancic 2002). Whilst there are increasing efforts to implement family centred care in NICU there are very few studies on communication between doctors and parents in NICU. Neonatologists and parents have advocated formal communication aids such audiotaping, and a simplified gestation-outcome table (Koh 2000), but no randomised trials have been done on any communication aids. Communication is crucial in the NICU (Harrison 1993) and audiotaping has been recommended by investigations into failures of health care (HMSO 2002). The lack of randomised trial on any form of communication aid is likely to be due to general views among clinicians that communication is soft science. Communication in NICUs is challenging, as parental recollection, understanding and preferences for information of their sick babies can change with the trajectory of the baby's illness. The central role of optimal communication between neonatologists and parents in NICU suggests the need for a robust randomised controlled trial to address the short and long term effects of intervention to improve communication.

Reviewers' conclusions

Implications for practice

No information is available from randomised trials or quasi randomised trials to indicate the effects of providing audio recordings of conversations with neonatologists to parents of sick babies in NICU.

Implications for research

Like in adult medicine (Scott 2004a) and in paediatrics (Scott 2004), randomised controlled trials are needed in neonatology to assess the benefits or otherwise of providing parents in NICU with communication aids, including audiotaping of their conversations with neonatologists. There should be adequate follow up of clearly identified outcomes including views and usage by parents and families of any communication aids, short term and long term impact on parental understanding, recall of information, moods, general and psychological health, marital well being, parenting skills and cost of implementing any communication aids.

Acknowledgements

External source of funding:
Royal Children's Hospital Foundation, Brisbane.

Potential conflict of interest

Three of the authors of this review are currently involved in the undertaking of a randomised trial which should be eligible for consideration for inclusion (Koh THHG, Butow P, Coory M, Budge D, Collie L, Whitehall J, Dunn, Tattersall MHN. Providing parents in a neonatal intensive care unit with audiotapings of their conversations with neonatologists: a randomised trial).

Other references

Additional references

Affleck 1991

Affleck G, Tennen H, Rowe J. Infants in Crisis: How parents cope with newborn intensive care and its aftermath. New York, NY: Springer-Verlag, 1991.

Crowther 1995

Crowther ME. Communication following a stillbirth or neonatal death: room for improvement. British Journal of Obstetrics and Gynaecology 1995;102:952-6.

Harrison 1993

Harrison H. The principles of family-centered neonatal care. Pediatrics 1993;92:643-50.

HMSO 2002

Secretary of State for Health. Learning from Bristol: The Department of Health Response to the report of the public enquiry into children's heart surgery at the Bristol Royal Infirmary 1984-1995. HMSO, Norwich, 2002.

Jedlicka-Kohler 1996

Jedlicka-Kohler I, Gotz M, Eichler I. Parents' recollection of the initial communication of the diagnosis of cystic fibrosis. Pediatrics 1996;97:204-9.

Koh 1998

Koh THHG, Jarvis C. Promoting effective communication in neonatal intensive care units by audiotaping doctor-parents conversations. International Journal of Clinical Practice 1998;52:27-9.

Koh 2000

Koh TH, Casey A, Harrison H. Use of an outcome by gestation table for extremely premature babies: a cross-sectional survey of the views of parents, neonatal nurses and perinatologists. Journal of Perinatology 2000;20:504-8.

Ley 1967

Ley P, Spelman MS. Communicating with the patient. London: Staples Press, 1967.

Lilienthal 1998

Lilienthal C. Who is sued and why? Journal of the Medical Defence Union 1998;(January):11-12.

Loftus 1982

Loftus EF, Burns TE. Mental shock can produce retrograde amnesia. Memory and Cognition 1982;10:318-23.

Moore 2003

Moore KA, Coker K, DuBuisson AB, Swett B, Edwards WH. Implementing potentially better practices for improving family-centered care in neonatal intensive care units: Successes and challenges. Pediatrics 2003;111:e450-e460.

NHMRC 1996

NHMRC Clinical Practice Guidelines. Care around preterm birth. Canberra: Australian Government Publishing Service, 1996.

Perlman 1991

Perlman NB, Freedman JL, Abramovitch R, Whyte H, Kirplalani H, Perlman M. Information needs of parents of sick neonates. Pediatrics 1991;88:512-18.

Richards 1998

Richards T. Partnership with patients. BMJ 1998;316:85-6.

Rogers 1998

Rogers CG, Tyson JE, Kennedy KA, Broyles RS, Hickman JF. Conventional consent with opting in versus simplified consent with opting out: an exploratory trial for studies that do not increase patient risk. Journal of Pediatrics 1998;132:606-11.

Saunders 2003

Saunders RP, Abraham MR, Crosby MJ, Thomas K, Edwards WH. Evaluation and development of potentially better practices for improving family-centered care in neonatal intensive care units. Pediatrics 2003;111(suppl):e437-e49.

Scott 2004

Scott JT, Prictor MJ, Harmsen M, Broom A, Entwistle V, Sowden A, Watt I. Interventions for improving communication with children and adolescents about a family member's cancer (Cochrane review). In: The Cochrane Library, Issue 3, 2004. Chichester, UK: John Wiley & Sons, Ltd.

Scott 2004a

Scott JT, Entwistle VA, Sowden AJ, Watt I. Recordings or summaries of consultations for people with cancer (Cochrane Review). In: The Cochrane Library, Issue 3, 2004. Chichester, UK: John Wiley & Sons, Ltd.

Snowdon 1997

Snowdon C, Garcia J, Elbourne D. Making sense of randomization; responses of parents of critically ill babies to random allocation of treatment in a clinical trial. Social Science and Medicine 1997;45:1337-55.

Tattersall 1994

Tattersall MHN, Butow PN, Griffin A-M, Dunn SM. The take-home message: patients prefer consultation audiotapes to summary letters. Journal of Clinical Oncology 1994;12:1305-11.

Watkinson 1994

Watkinson M. Does tape recording the disclosure of Down's syndrome help parents? Journal of Reproductive and Infant Psychology 1994;12:1-4.

Zupancic 2002

Zupancic JA, Kirpalani H, Barrett J, Stewart S, Gafni A, Streiner D, et al. Characterising doctor-parent communication in counselling for impending preterm delivery. Archives of Disease in Childhood. Fetal and Neonatal Edition 2002;87:F113-7.

Notes

Published notes

Amended sections

Cover sheet
Synopsis
Abstract
Background
Objectives
Criteria for considering studies for this review
Search strategy for identification of studies
Methods of the review
Description of studies
Methodological quality of included studies
Results
Discussion
Reviewers' conclusions
Potential conflict of interest
Other references

Contact details for co-reviewers

Ms Donna Budge
Research Nurse
NICU
The Townsville Hospital
Queensland 4814 AUSTRALIA

Prof Phyllis P Butow, BA (Hons) Dip Ed, M Clin Psych, PhD, MPH
Associate Professor
Department of Medical Psychology
Royal Prince Alfred Hsopital, University of Sydney
Missenden Rd
Camperdown
NSW AUSTRALIA
2050
Telephone 1: 0295157097
Facsimile: 0295155697
E-mail: phyllisb@med.usyd.edu.au

Mrs Bronia Renison, BA, Dip Lib
Health Sciences Librarian
Townsville Health Library
The Townsville Hospital
100 Angus Smith Drive
Townsville
Queensland AUSTRALIA
4814
Telephone 1: 07 4796 1760
Facsimile: 07 4796 1761
E-mail: Bronia_Renison@health.qld.gov.au

Dr Paul Woodgate, MBBS MMedSci(Clin Epid) FRACP
Neonatal Paediatrician
Department of Neonatology
Mater Mothers Hospital
Raymond Terrace
South Brisbane
Queensland AUSTRALIA
4101
Telephone 1: +61-7-38401911
Facsimile: +61-7-38401949
E-mail: Paul_Woodgate@mater.org.au


This review is published as a Cochrane review in The Cochrane Library, Issue 1, 2005 (see http://www.thecochranelibrary.com for information). Cochrane reviews are regularly updated as new evidence emerges and in response to comments and criticisms, and The Cochrane Library should be consulted for the most recent version of the Review.