retinopathy of prematurity.org :

 a speech by Helen Harrison on  Parents' Concerns in hospital nurseries
to the Tenth Canadian Ross Conference in Pediatrics, September 1994

 

This speech as well as the "Consensus Statements" and "Parent's Perspective of Proceedings" in this series  were first published in the Report of the Tenth Canadian Ross Conference in Pediatrics, GCI Communications,  Ed., Montréal, Abbott Laboratories, 1995.   It is posted here with Mrs. Harrison's kind permission.

 

References
 

 

1 Harrison H(1993). The principles for family- centered neonatal care. Pediatrics' 92: 643-50.

 

 

2 Harrison H, Kositsky A. The Premature Baby Book. New York: St. Martins Press, 1983.

 

 

3 Eikner S ( 1986). Dealing with long-term problems:  A parent's perspective. Neonatal Network, 3: 43-9.

 

 

 


 


 

  

 

  

  Preemies and their parents get short shrift

 

in many intensive care nurseries

 
 

Davidpreem02.jpg (21412 bytes)

Parents' Concerns about the NICU: Environmental Issues and Developmental Care 
by Helen Harrison

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1   2   3   4   5    of this series

Consensus Statements and 
Concluding Comments

Introduction

The following text states the consensus on guidelines for environmental light and noise. Also contained in these pages are recommendations for clinical practice in the NICU and suggestions for future research.

The invited presenters and small- group workshops served as a basis for further discussion by speakers and participants to formulate guidelines and recommendations for optimizing the environment of the NICU. In reaching these guidelines the participants attempted to respond to the goals of the conference outlined at the beginning of this book.

The guidelines and recommendations are based upon available scientific information as far as possible.  They were reached by all conference participants in their efforts to recommend changes where there was sufficient evidence and to identify areas requiring further research in order to continue to optimize the physical and psycho- social environment of the infant in the NICU.

*

Consensus on guidelines for environmental light

Recommendations for clinical practice

1. Ambient light levels should be monitored in NICUs to ensure compliance with currently recornmended workplace standards.

2. The minimum light levels which permit the NICU staff to carry out their work safely and effectively should be established.

3. Light levels at the infants face (i.e., in the incubator, the overhead warmer or the crib) should also be measured.

4. Ambient non- therapeutic blue wave- length light (<500 nm) should be minimized in the NICU environment.

5. Ambient light levels in NICUs should allow for the experience of day- night cycling in the infants, especially as the time for discharge home approaches.

6. Individualized light sources should be used for each infant in the NICU.  
 

Recommendations for research

1. Prospective randomized clinical trials (RCT) of the influence of environmental light on infants' growth and development, well-being, visual function and retinopathy of prematurity (ROP) should be undertaken.

2. Safe and effective methods of shielding infants' eyes from environmental light sources should be developed and evaluated.

*

Consensus on guidelines for environmental sound

Recommendations for clinical practice

1. Each NICU should monitor its sound levels for at least a 24- hour period annually, and more often if there are apparent changes in noise levels or nursery design.

2. As reduction in environmental sound levels is unlikely to have deleterious effects, NICUs should examine measures to reduce sound levels including modification of physical facilities and equipment, staff scheduling and activities. The noise level in the NICU environment should always be less than 65-70 dB.

3. Noise levels in NICUs should always be less than occupational health standards for adults.

4. When usual noise levels are exceeded (for example in helicopter transport) safe and effective ways to shield infants' ears should be used.

5. Neonatal and follow-up programs should screen at-risk newborns for hearing loss.

6. While environmental noise levels should be moderated, potentially beneficial sounds, such as the voice of a parent, should not be discouraged.

 
Recommendations for research

1. Detailed characterization of the levels and effects of sound in the NICU environment should be studied.

2. Patterns and causes of hearing loss in infants cared for in NICUs should be determined. This should include consideration of variations in susceptibility to ototoxic drugs and noise.

3. Clinical trials designed to measure the effect of reduced sound levels in the NICU infants' environment are recommended."

4. Effects of noise on infants' development, well- being and behavioural organization should be undertaken.

*

Consensus on guidelines for infant- sensitive developmental care

Recommendations for clinical practice

1. We recommend the concepts of "Infant- Sensitive
Family- Centred Care", taking into account the: 

  • Clinical status of the infant

  • Behaviour

  • Temperament

  • Environment

  • Development

  • Family

  • Attention to positive and negative stimuli (including hazards and pain)

  • Caregiver compatibility

  • Consistency of caregiver

2. Introduce the above concepts into training programs for all staff.

3. Encourage ways of improving communication between families and caregivers.

4. Set up systems to promote consistency and continuity of care by reducing the number of caregivers.

5. Set up systems to encourage assessment of the infants behaviour in order to develop individualized care plans, to reduce stress- responses (in the infant as well as in the parents) and to promote optimal development.

6. Encourage cooperation between caregivers, researchers and industry to promote infant- friendly equipment.

Recommendations for research

1. "Infant- Sensitive Family- Centred Care Programs" should be assessed by well- designed research.

2. Methods for stress reduction and state regulation should be evaluated scientifically for effectiveness and safety.

*

Consensus on guidelines for family- centred care

Recommendations for clinical practice

1. Neonatal care includes respect for the emotional needs of parents and families as well as their infant(s). This is facilitated by establishing rapport with parents, understanding their values, and being aware of their relevant life experiences.

2. Neonatal intensive caregivers should be sensitized to promote the needs of parents and to minimize actual or perceived loss of control over their infant so that they may assume their more normal roles as parents. Parents should be informed in the medical and ethical decision- making process.

3. Each NICU should have physical structures and procedures in place which facilitate the ongoing sensitivity of caregivers towards family- centred care.

4. NICUs need to become active in recognizing the needs of families and care- givers for ongoing emotional support.

5. We strongly support increased consistency of caregivers.

6. Consideration should be given to ensure continuity of care at discharge.

7. All NICUs should provide facilities for families to room-in with their infants before discharge.

8. Research is an integral feature of the NICU environment and parents should be invited to participate at all stages of its development and conduct.

*

Parent's Perspective of Proceedings
by Helen Harrison

As a parent and parent advocate, I am delighted that this conference has taken place. The consensus statements developed here are consistent with "The Principles for Family- Centered Neonatal Care"1 and with recommendations from parents concerned with the effects of short- wavelength light. 

Along with the ethical guidelines developed last year in Canada and the proposed conference on neonatal pain, these consensus statements address in a substantive manner almost every environmental and caregiving concern of NICU parents. Nevertheless, I think that there are two additional areas to consider for future recommendations, or for amending the current proposals.

The first area is peer support. We have made no specific recommendation mentioning parent- to- parent support, yet it can be vital to the well- being of families not only during the babys stay in the NICU, but throughout the childs life. 

I was speaking yesterday with a physician at the conference who specializes in follow-up.  He commented that some parents drop out of follow-up after their child reaches the age of two or three only to return to the clinic at age six or seven when learning disabilities become an issue.

Though parents turn to professionals for help at various stages, they can also benefit from contact with other families who have gone through similar experiences.

Over the years I have been struck by the number of prematurely born children, adolescents, and adults who are interested in peer support for themselves. I recently received a letter from a girl who was in the NICU with my son eighteen years ago. 

I remember the neurosurgeon taking me over to see this little girl (who had just been shunted for hydrocephalus), so that I would know what to expect from my son's surgery.  Eighteen years later, the girl — who was unaware of our previous connection — found my name in a hydrocephalus parent support group newsletter which listed me as having a son with hydrocephalus who was around the same age as her. 

She wrote to me and we had a very emotional reunion.  I told her about meeting her as a newborn and she told me of her interest in contacting other teenagers with similar problems. She has agreed to write an account of her experiences for the next edition of The Premature Baby Book2

Giving and receiving peer support has clearly been important to her and to others. I hope peer support for prematurely born children and their families will become a recognized part of the standard of care.

I would also like to see more in the statements pertaining to communications, on the need to fully inform parents about their infants' diagnosis, treatments and prognosis. 

Yesterday, I heard some of you voicing concerns about "overwhelming" parents with too much information. In my experience, parents usually want a great deal more information than some professionals are willing to give. 

I'd like to read a quote by Shay Eikner, a mother who wrote about the situation she and her husband encountered after the premature birth of their twins:

"The need for information was our biggest frustration from the beginning and something I expect will continue. I was amazed to find that our ongoing questions about the boys' conditions and treatments were viewed by some as too probing and not our concern... 

Shortly after the boys' birth I asked a neonatologtst for reading material about premature infants.  I was given a Johnson & Johnson pamphlet entitled. "Your New Baby."

During most rotations we were able to find at least one physician who respected our concerns and gave information freely, but there were times when we resorted to eavesdropping on rounds to discover certain facts. ... 

Our need for information was not for the purpose of second- guessing. ...  it was our way of coping.  It came from a legitimate need to bepart of events that would have a lifelong impact on us...

I have yet to hear a parent tell of being terrified by needless graphic details of possible long- term problems to which their critically ill newborn might succumb. What I have heard instead is the frustration of having legitimate concerns minimized...

During a conversation I had with a social worker on this subject, she asked 'How do you tell a family nicely that their child may be handicapped?'  That made me wonder how often the sheer unpleasantness of the task becomes the overriding factor. There is no nice way to tell parents, but it can be done with sensitivity and caring." 3

I remember a Parent Care conference in which another social worker attempted to give a talk on parents' rights in the NICU.  She opened with the question: "What should parents be told about their baby?" With one voice the audience of parents shouted : "Everything!"

For the next hour, members of the audience from around the U.S. got up and told how information in the NICU had been withheld from them, or presented selectively. The social worker never had a chance to deliver her speech!

I realize that it is not possible to spend all of your time informing and educating parents, so I would encourage the use of supplementary forms of information. These might include interactive videos, audio and video tapes, books and articles (including medical texts and articles), to be placed in a resource library for parents.

These could supplement (but never replace) your conferences with the parents, parent access to the infant's chart, and rounds discussions.  With some additional attention to peer support and the parents' need for information, this conference will have substantively addressed the major environmental and caregiving issues that concern families. I look forward to reporting the results of this conference to NICU parents and their organizations.  Thank you.

*

Continue to Jill Lawson's chilling account of routine surgery without pain relief for premature babies and her uphill battle against ghastly medical prejudices.

  

 
 

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