Published on January 15, 2008
Compendium on Preterm Birth: Compendium on Preterm Birth Employing Systems-Based Practice for Patient-Centered Care Produced in cooperation with: American Academy of Pediatrics The American College of Obstetricians and Gynecologists Association of Women’s Health, Obstetric and Neonatal Nurses © March of Dimes 2006 Objectives: 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 Developing a Patient- and Family-Centered Care Plan: 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 Developing a Patient- and Family-Centered Care Plan (continued): 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) 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) Effect of Preterm Birth on Families: 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. Antepartum Activity Restriction (Bedrest)Women’s Experiences: 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. Effects of Bedrest on the Family: 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. Coping with Bedrest: 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 Coping with Bedrest (continued): 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) Clinical Recommendations on Bedrest: 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 Helping Families with Home Care: 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 Interventions for the Hospitalized Pregnant Woman: 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 Source: Stainton MC. MCN Am J Matern Child Nurs 1994;19:24-8. Interventions for the Hospitalized Pregnant Woman Preparing Parents for a Preterm Delivery: 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: Information for Parents of an Infant at the Threshold of Viability: 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 Source: ACOG Practice Bulletin #38, 2002. Information for Parents of an Infant at the Threshold of Viability Women’s Feelings about the Impending Birth of a Preterm Infant: 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 Preparing Parents of a Preterm Infant for Discharge to Home: 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): 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.