Compendium on Preterm Birth Employing Systems-Based Practice for Patient-Centered Care Produced in cooperation with: American Academy of Pediatrics The

Compendium on Preterm BirthCompendium on Preterm Birth

Employing Systems-Based Practice Employing Systems-Based Practice for Patient-Centered Carefor Patient-Centered Care

Produced in cooperation with:American Academy of PediatricsAmerican Academy of Pediatrics

The American College of Obstetricians and GynecologistsThe American College of Obstetricians and Gynecologists

Association of Women’s Health, Obstetric and Neonatal NursesAssociation of Women’s Health, Obstetric and Neonatal Nurses

© March of Dimes 2008

Compendium on Preterm BirthPatient-Centered Care © March of Dimes 2008

Disclosure Statement &Funder Acknowledgement

Disclosure Statement

The staff, planning committee members, and reviewers of the Compendium on Preterm Birth have reported that they have no potential conflict of interest to disclose.

Funder Acknowledgment

The Compendium on Preterm Birth is funded entirely by the March of Dimes.


Objectives

At the completion of this section, participants should be able to:

– Recognize the components of a patient- and family-centered care plan that coordinates multidisciplinary services and resources as it relates to preterm birth


All plans of care should be decided with the patient and family’s strengths, identified goals, and needs in mind and with their participation whenever possible.

Antepartum preterm labor might require the woman to decrease her physical activity or even stop working for a time.

The impact of the care plan on the family’s finances and health insurance is a major consideration and should be discussed.

Developing a Patient- and Family-Centered Care Plan


A multidisciplinary team approach should be used in care planning.

Nurses can provide expertise in directing patient care, stabilizing the mother and newborn, counseling, coordinating care, and providing patient teaching.

A social worker may need to address anticipated financial concerns and/or assist in locating community resources.

The prenatal health care provider will determine how often prenatal visits should occur and what medical interventions are necessary.

The neonatal staff should discuss neonatal issues with the family, assessing their beliefs, values and goals for the baby while providing information about the anticipated care needs of the baby and the range of possible neonatal outcomes.

Developing a Patient- and Family-Centered Care Plan (continued)


Other sources of support for the multidisciplinary team might include:

Other women who have experienced preterm labor/birth

Home-care nurses or agencies

Pastoral assistance for the family with ties to a religious community

Online support communities

– March of Dimes Share Your Story: www.shareyourstory.org

– Sidelines: www.sidelines.org

Developing a Patient- and Family-Centered Care Plan (continued)


Families of very low birthweight infants had higher stress levels, ongoing medical problems and more school problems (Taylor HG et al., 2001).

During the first six months after the birth of low-birthweight infants, most mothers had to leave their employment (Gennaro S, 1996) .

Parents continue to exhibit high stress levels at year 3 related to developmental delays (Singer LT et al., 1999) .

Effect of Preterm Birth on Families

Sources: Gennaro S. Image J Nurs Sch 1996;28:193-8; Singer LT, Salvator A, Guo S, et al. JAMA 1999;281:799-805; Taylor HG, Klein N, Minich NM, et al.

Arch Pediatr Adolesc Med 2001;155:155-61.


Adverse physiological effects– Weight loss– Muscle loss– Calcium loss

Increased stress for the woman and her family– Negative emotions– Role reversals– “Missing out”– Being a prisoner

Antepartum Activity Restriction (Bedrest)Women’s Experiences

Sources: Heaman M, Gupton A. Birth 1998;25:252-8; Maloni JA et al. Biol Res Nurs 2004;5:177-86; Maloni JA. J Obstet Gynecol Neonatal Nurs 1993;22:422-6.


Family difficulties–taking on additional responsibilities

Emotional distress–adverse emotional effects and confusion felt by children

Anxiety about health of mother and baby

Child-care difficulties–relying on others’ help

Financial difficulties–loss of income or savings

Effects of Bedrest on the Family

Sources: Maloni JA et al. J Obstet Gynecol Neonatal Nurs 2001;30:165-73; Maloni JA et al. Image J Nurs Sch 1997;29:183-8; May KA. J Obstet Gynecol Neonatal Nurs 1994;23:246-51.


Help identify diversionary activities for the woman who is asked to restrict her activities

Empower women by providing opportunities to have a sense of control over their care and circumstances

Celebrate milestones–every week gained is important!

Coping with Bedrest


Counsel the woman about medical leave of absence and the Family Medical Leave Act

Help the woman and her partner understand the rationale for restricted sexual activity and identify alternative ways to be close and affectionate

Coping with Bedrest (continued)


May 2003 ACOG Practice Guideline #43

“Bedrest, hydration and pelvic rest do not appear to improve the rate of preterm birth, and should not be routinely recommended.”

Clinical Recommendations on Bedrest


Involve family members in developing the plan of care

Assist the mother living alone to identify sources of support

Help family members renegotiate roles and routines

If possible, arrange the physical space to minimize activity

Emphasize the importance of asking for help from social networks and how to get help when no natural support network exists

Acknowledge and commend the family for the hard work they are doing for the woman and the baby

Inform the family about local and national support groups

Helping Families with Home Care


If long-term hospitalization is necessary:

Help the woman to organize her time by setting short-term goals and celebrating those accomplishments

Acknowledge the importance of what the woman is doing to help bring the healthiest baby possible into the world

Provide opportunities for repeated contacts to discuss issues or concerns and to clarify or augment information shared

If a partner is involved, support and engage the partner throughout this period of time as well

Assist the woman in maintaining family relationships and functioning

Give the woman as much control as possible Help the woman to focus on future possibilities

Interventions for the Hospitalized Pregnant Woman

Source: Stainton MC. MCN Am J Matern Child Nurs 1994;19:24-8.


Explains reasons for and details about maternal transport, if necessary

Answers questions and validates concerns

Gives parents information about the logistics of delivery and NICU care

Supports the family with compassion

Provides grief counseling, when needed

Preparing Parents for a Preterm Delivery

A neonatal and perinatal provider counsels parents:


Data on neonatal survival rates in general and for the particular institution

An overview of potential problems and their treatments and complications

The possibility of long-term disabilities

The possibility that expectations for the baby may change after birth depending on the condition of the newborn

Information for Parents of an Infant at the Threshold of Viability

Source: ACOG Practice Bulletin #38, 2002.


Shock

Guilt that she “caused” the preterm labor

Concern for the baby’s health

Relief that the unpleasant side effects of medications will be over soon

Anxiety about the labor and birth

Sadness over not completing the pregnancy

Women’s Feelings about the Impending Birth of a Preterm Infant

Source: Freda MC & Patterson ET, 2004


Early intervention programs have been shown to be helpful with developmental issues – help the parents find such programs in their locale

Discuss the need for frequent medical visits to track growth and development, RSV prevention, etc.

Help parents identify a pediatric primary care provider

Preparing Parents of a Preterm Infant for Discharge to Home

Sources: AAP, 1998; Bakewell-Sachs S, Blackburn S, 2001; Majnemer A. Semin Pediatr Neurol 1998;5:62-9.


Preparing Parents of a Preterm Infant for Discharge to Home (continued)

Provide written information about the development of preterm infants

Help parents find community support groups (www.shareyourstory.org)

Help parents develop confidence and competence in caring for their infants (parent education, opportunities to learn and demonstrate infant care skills)

Sources: AAP, 1998; Bakewell-Sachs S & Blackburn S, 2001; Majnemer A. Semin Pediatr Neurol 1998;5:62-9.

Documents

Compendium on Preterm Birth Employing Systems-Based Practice for Patient-Centered Care Produced in cooperation with: American Academy of Pediatrics The