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Evidence-Based Review of Nursing Interventions to Prevent

Secondary Disabilities in Fetal Alcohol Spectrum Disorder

Linda M. Caley; Nancy Shipkey; Theresa Winkelman; Christine Dunlap; Sara Rivera 

Pediatr Nurs.  2006;32(2):155-162.  ©2006 Jannetti Publications, Inc.

Posted 07/06/2006

Fetal alcohol spectrum disorder (FASD), an umbrella term used to describe the constellation of effects that occur because of prenatal alcohol exposure, is a serious and widespread problem. First described in 1973 as fetal alcohol syndrome (FAS), a great deal is now known about prenatal alcohol exposure and its prevalence. Children with FAS represent only a portion of children exposed prenatally to alcohol. Research has documented a spectrum of effects of prenatal alcohol exposure, and multiple terms have been developed to cover the different effects. Recently, governmental and advocacy organizations in the United States and Canada developed a consensus definition to cover the multiple terms previously used including fetal alcohol syndrome (FAS), alcohol related neurodevelopmental disabilities (ARND), fetal alcohol effects (FAE), alcohol related birth defects (ARBD), and partial fetal alcohol syndrome (PFAS). The Consensus Statement is as follows:

Fetal alcohol spectrum disorder (FASD) is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications. The term FASD is not intended for use as a clinical diagnosis (Bertrand et al., 2004, p. iv).

Guidelines (Bertrand et al., 2004) giving specific criteria for referral and diagnosis of FAS versus other problems due to prenatal alcohol exposure can be found at the Centers for Disease Control and Prevention (CDC) Web site: www.cdc.gov/ncbddd/fas/faspub.htm.

Significance of the Problem

FASD is the leading known preventable cause of mental retardation in western civilization and one common reason a child's development and learning is affected. The need to address the prevention of secondary disabilities caused by prenatal alcohol exposure has become a national priority (CDC, 2002). Secondary disabilities are those not present at birth but that occur because of the primary disability. Research has demonstrated that secondary disabilities associated with FASD can be prevented or lessened by a better understanding and appropriate interventions (Streissguth, Barr, Kogan, & Bookstein, 1996).

Nurses encounter children and families throughout all parts of their lifespan who are at risk for or who have FASD, and nursing interventions are key to the prevention and treatment of this problem. Secondary and tertiary nursing interventions have proven to prevent secondary disabilities and enhance outcomes for high-risk children in multiple research studies (see Alexander, Younger, Cohen, & Crawford, 1988; Brooten et al., 1988; Brooten et al., 1986; Brooten et al., 1994; Lipman, 1988; Melnyk et al., 2001; Olds, Henderson, Chamberlin, & Tatelbaum, 1986; Weisman, 1992). While many of the interventions in these studies apply to children and families with FASD, we only included those strategies specifically aimed at children and families with FASD in this review.

The Clinical Question

We undertook this review to answer the question, "What is the state of the evidence for nursing interventions to prevent secondary disabilities in children and families affected by FASD?" This was a necessary first step prior to developing effective interventions in this area. According to van Meijel, Gamel, van Swieten-Duijfjes, and Grypodonck (2004), identification of existing intervention practices is an extremely valuable and necessary aspect of developing evidence-based interventions.

Search Strategy

This review followed the method described by Garrard (1999) in Health Sciences Literature Review Made Easy: The Matrix Method. Garrard's method describes steps for planning and managing the search of the literature, selecting and organizing documents for review, abstracting and synthesizing the findings. Some common terms used to conduct such a review are shown in Table 1 .

A preliminary search identified no previous review of nursing interventions for preventing secondary disabilities in FASD. Therefore, a wide net was cast in undertaking this search to identify articles or research studies written by nurses or in the nursing literature about FASD. Three of the authors, the reference librarian at the University at Buffalo, and staff from the SAMHSA Center for Excellence on FASD all conducted searches for articles between 1980 through 2004 using Journals at Ovid, CINAHL, Medline, PsychInfo, Cochrane Reviews, the metasearch engine Dogpile, and Digital Dissertations. The search terms included fetal alcohol syndrome, fetal alcohol effects, alcohol related neurological disorders, FASD, nursing interventions, prevention, secondary disabilities, foster care, questionnaires, and surveys. The search yielded 1,090 references. Endnote Reference Manager Software was used to capture the article information.

Selection and Organization of Articles for Abstraction

References were exported to Microsoft Excel and abstracted in two rounds. Three of the authors reviewed the articles separately. All members of the team were pediatric or school nurse practitioners (PNP/SNP) or PNP students enrolled in a graduate nursing program who had successfully completed the research course requirements for their respective graduate program.

In round one, the articles were coded for the profession they were written by or aimed at by reading the abstract. The codes were: 1.1 nursing, 1.2 health professionals, 1.3 social workers, 1.4 juvenile justice, 1.5 foster care, 1.6 other, and 1.7 non human studies. If at least two of the three coders agreed that an article was written by or was specifically aimed at nurses, contained nursing interventions for FASD, or addressed health professionals in general, it was included in the next round for abstraction. If there was any doubt the article met the criteria, it was included for abstraction. This resulted in 110 references chosen for abstracting.

In round two, the remaining 110 references were read completely for abstraction. During this process, 46 were further excluded due to inability to obtain the full article, inability to translate the article from the language in which it was written, or the fact that there was no actual information in the article about FASD. Articles written before 1990 were eliminated since many contained information no longer considered relevant given the latest research or were not consistent with recent guidelines (Bertrand et al., 2004). Sixty-four references remained for abstraction.

Data Extraction Strategy

To abstract the data from the remaining articles, a review matrix was set up in Microsoft Excel. The matrix included a summary of the article; whether it was research and, if so, what type of research; if it included nursing interventions; if those interventions were aimed at preventing secondary disabilities; and the type of intervention recommended.

The type of nursing intervention recommended was identified using a model developed by Keller, Strohschein, Lia-Hoagberg, and Schaffer (1998). In Public Health Interventions - Applications for Public Health Nursing (Public Health Nursing Section, 2001), Keller et al. describe three levels of nursing intervention: community-focused, systems-focused, and individual/family-focused.

Community-focused practice changes community norms, community attitudes, community awareness, community practices, and community behaviors and is directed toward entire populations within the community or occasionally toward target groups within those populations. Systems-focused practice changes organizations, policies, laws, and power structures. The focus is not directly on individuals and communities but on the systems that impact health. Individual-focused practice changes knowledge, attitudes, beliefs, practices, and behaviors of individuals. This practice level is directed at individuals, alone or as part of a family, class, or group. (p. 4-5)

At each of those levels, the authors identify 17 possible types of interventions grouped together by those interventions frequently implemented together. For example, health teaching and counseling often occur together in consultation with other professionals. Figure 1, adapted from their model, shows the levels of intervention as well as the types of interventions.

Figure 1. 

Methods of Data Synthesis and Key Results

Once abstracted, the data was analyzed by type of reference and type of intervention to identify themes that emerged about nursing interventions to prevent secondary disabilities in FASD.

Of the 64 references, 28 contained recommendations for nursing interventions to prevent secondary disabilities. Four of these references were research based (Clement-Murphy, 2001; Free, Russell, Mills, & Hathaway, 1990; Gardner, 2000; Hess, 1996) and could be considered level VI evidence, that is evidence from a single descriptive or qualitative study (Melnyk & Fineout-Overholt, 2005). The research studies are summarized in Table 2 .

Twenty-four references were Level VII evidence, opinion of authorities. There were no systematic reviews or meta-analysis of randomized controlled trials (RCTs) or evidence-based clinical practice guidelines (Level I). There were no RCTs (Level II), well-designed controlled trials without randomization (Level III), or well-designed case-control and cohort studies (Level IV) (Melnyk & Fineout-Overholt, 2005).

The findings from the literature are synthesized below by categories and type of intervention.

Referral and Follow-up, Case Management, and Delegated Functions

Referral and Follow-up. Referral and follow-up interventions assist individuals, families, groups, organizations, and communities to utilize necessary resources to prevent or resolve problems or concerns. Referral and follow-up most often follow the implementation of another intervention, such as health teaching, counseling, delegated functions, consultation, screening, and case-finding. It also is an important component of case management. On occasion, it is implemented in conjunction with advocacy (Public Health Nursing Section, 2001, p. 80).

Referral was the most recommended nursing intervention, mentioned in 24 of the articles (Applebaum, 1995; Clement-Murphy, 2001; Cramer & Davidhizar, 1999; D'Apolito, 1998; Dempster, 1996; Dychkowski, 2000; Eliason & Williams, 1990; Eustace, Kang, & Coombs, 2003; Fitzgerald, 1999; Free et al., 1990; Gardner, 2000; Hess, 1996; Hess & Kenner, 1998; Hogan, 1992; Kenner & D'Apolito, 1997; Kenner, Dreyer, & Amlung, 2000; Oklahoma State Nurses Association, 1997; Redding, 1992; Redding & Selleck, 1993; Remkes, 1993; Robinson, 1999; Savage et al., 2003; Smitherman, 1994; Wekselman, Spiering, Hetteberg, Kenner, & Flandermeyer, 1995). References mentioned 12 different types of referrals necessary: (a) early intervention services (12 articles), (b) referral of mother to alcohol treatment programs (8 articles), (c) counseling and support groups (6 articles), (d) interdisciplinary teams or specialist in FAS (7 articles), (e) follow-up care for developmental delay (4 articles), and (f) respite care (3 articles). Additional recommendations included referral to community services, crisis management, child welfare, public health nurses, therapeutic childcare, and agencies that monitor the home environment.

Case Management. Case management interventions optimize self-care capabilities of individuals and families and the capacity of systems and communities to coordinate and provide services (Public Health Nursing Section, 2001 p. 93).

Ten references recommended case management (Clement-Murphy, 2001; Cramer & Davidhizar, 1999; Dempster, 1996; Eliason & Williams, 1990; Fitzgerald, 1999; Hawke, 2002; Hess & Kenner, 1998; Redding, 1992; Remkes, 1993; Wekselman et al., 1995), although the exact recommendations were different in each one. The recommendations fell into two categories: general recommendations and nursing specific recommendations. General recommendations included case management for financial assistance, resources available, medical, educational services, physical therapy, speech, behavioral care, and social needs. Nursing specific recommendations included the nurses' responsibility for coordination of services, discharge planning, and assuring access to care and continuity of services.

Delegated Functions. Delegated functions are direct care tasks that a registered professional nurse carries out under the authority of a health care practitioner, as allowed by law. Delegated functions also include any direct care tasks a registered professional nurse entrusts to other appropriate personnel to perform (Public Health Nursing Section, 2001 p. 113). There were no recommendations related to delegated functions.

Screening, Case-finding, Outreach, Disease and Health Event Investigation, and Surveillance

Screening, case-finding, outreach, surveillance, and disease and other health event investigations often are implemented together. Case-finding is closely linked with screening of individuals and families and the two terms are sometimes used interchangeably (Public Health Nursing Section, 2001, p. 56).

Screening. Screening interventions identify individuals with unrecognized health risk factors or asymptomatic disease conditions in populations. The Public Health Nursing Section (2001) identifies three types of screening described in the literature: mass, targeted, and periodic. The recommendations for screening in this review fall mainly into the category of targeted screening at the individual level.

Twenty references mentioned screening as an intervention to prevent secondary disabilities (Applebaum, 1995; Clement-Murphy, 2001; D'Apolito, 1998; Dempster, 1996; Dychkowski, 2000; Eliason & Williams, 1990; Eustace, 2000; Fitzgerald, 1999; Gardner, 2000; Hawke, 2002; Hess & Kenner, 1998; Hogan, 1992; Kenner & D'Apolito, 1997; Oklahoma State Nurses Association, 1997; Redding, 1992; Redding & Selleck, 1993; Remkes, 1993; Savage et al., 2003; Smitherman, 1994; Wekselman et al., 1995). The majority of articles (14) suggested screening of women, especially alcoholic mothers, as a first step toward identifying an infant at risk for FASD. One article specifically suggested screening in homeless shelters. Three articles recommended screening infants for delay/neurodevelopmental delay, growth retardation, or physical abnormalities. Other recommendations included the use of developmental evaluations, specifically the Denver Developmental Test and the use of physical and laboratory data such as urine drug screens and meconium testing.

Case-finding. Case-finding interventions locate individuals and families with identified risk factors and connect them to resources. It often leads to referral and follow-up.

Eleven references recommended case-finding (Applebaum, 1995; Clement-Murphy, 2001; D'Apolito, 1998; Dempster, 1996; Eustace et al., 2003; Fitzgerald, 1999; Gardner, 2000; Hess & Kenner, 1998; Kenner & D'Apolito, 1997; Smitherman, 1994; Wekselman et al., 1995). Specific recommendations included case-finding in homeless centers and in families who adopted children or are providing foster care and keeping a high level of suspicion for FAS in adolescents and adults with developmental disabilities, attention deficits, or conduct disorders.

Outreach. Outreach interventions locate populations-of-interest or populations-at-risk and provide information about the nature of the concern, what can be done about it, and how services can be obtained (Public Health Nursing Section, 2001, p. 41).

Six references contained recommendations for outreach (Applebaum, 1995; Clement-Murphy, 2001; Eustace et al., 2003; Fitzgerald, 1999; Hawke, 2002; Kenner & D'Apolito, 1997). Recommendations fell into two categories. The first was outreach to the community at large through education, and to teenagers, those in homeless shelters, and women with drinking problems. The second was outreach to professionals, specifically obstetrical and pediatric physicians, and to clinics.

Disease and Other Health Event Investigation. Disease and other health event investigation interventions systematically gather and analyze data regarding threats to the health of populations, ascertains the source of the threat, identifies cases and others at risk, and determines control measures. The threats may be actual or potential. The investigative process consists of identifying and verifying the source of the threat; identifying cases, their contacts, and others at risk; determining control measures; and communicating with the public, as needed (Public Health Nursing Section, 2001, p. 29). There were no recommendations in this area.

Surveillance. Surveillance activities describe and monitor health events through ongoing and systematic collection, analysis, and interpretation of health data for the purpose of planning, implementing, and evaluating public health interventions (Public Health Nursing Section, 2001, p. 13). There were no recommendations in this area.

Health Teaching, Counseling, and Consultation

Health Teaching. Health teaching interventions communicate facts, ideas, and skills that change knowledge, attitudes, values, beliefs, behaviors, and practices and skills of individuals, families, systems, and/or communities (Public Health Nursing Section, 2001, p. 121).

Eleven references recommended specific types of health teaching for parents who have a child with FASD as a means of preventing secondary disabilities (Clement-Murphy, 2001; Cramer & Davidhizar, 1999; Fitzgerald, 1999; Free et al., 1990; Gardner, 2000; Hess & Kenner, 1998; Kenner & D'Apolito, 1997; Kenner et al., 2000; Redding & Selleck, 1993; Robinson, 1999; Wekselman et al., 1995).

The most frequently mentioned example of teaching was teaching parents strategies that work with children with FASD. Examples mentioned more than once were the need to teach parents: (a) how to provide a safe environment, (b) behavior management strategies, (c) growth and development, (d) how to recognize the infants behavioral cues to promote parent-infant interaction, (e) how to provide sensory integration, and (f) ways to build on the child's strengths by rewarding even the smallest steps taken. Several references recommended teaching the following related to understanding the diagnosis: (a) FASD is brain damage, (b) realistic expectations, and (c) that getting a diagnosis of FASD may help the family get needed services to prevent secondary disabilities. One author mentioned that helping the family see that they were going to have to change their lifestyle was the key to living successfully with this diagnosis.

The second type of recommendation for health teaching relates to helping parents learn strategies to help the child maintain control and regain it again when necessary. The recommendations included (a) developing routines, (b) alerting the child to changes in routines before they happen, (c) calming techniques such as providing physical comfort through a back rub and time out, (d) verbally redirecting the child and any negative behavior, (e) attaining eye contact, and (f) giving the child a neutral place to work through anger such as a bean bag or large cushion. Additional recommendations included helping parents learn how to deal with sleep disturbances and what community resources were available.

Counseling. Counseling interventions establish an interpersonal relationship with a community, system, family, or individual intended to increase or enhance their capacity for self-care and coping (Public Health Nursing Section, 2001, p. 151).

Six references recommended counseling (Applebaum, 1995; Cramer & Davidhizar, 1999; Fitzgerald, 1999; Free et al., 1990; Smitherman, 1994; Wekselman et al., 1995). Recommendations for families included crisis management and group sessions. For children, counseling was recommended to help them deal with feelings and fears and to strengthen coping strategies.

Consultation. Consultation seeks information and generates optional solutions to perceived problems or issues through interactive problem-solving with a community, system, family, or individual. The community, system, family, or individual selects and acts on the option best meeting the circumstances. (Public Health Nursing Section, 2001, pp. 165).

Three references recommended consultation (Dempster, 1996; Free et al., 1990; Kenner & D'Apolito, 1997). Recommendations included consultations with experts and specialists and consultations for referral to daycare and transportation.

Advocacy, Social Marketing, and Policy Development and Enforcement

Advocacy. Advocacy interventions plead someone's cause or act on someone's behalf with a focus on developing the community, system, individual, or family's capacity to plead their own cause or act on their own behalf. Advocacy is frequently used with other interventions, such as referral and follow-up, community organizing, and policy development and enforcement. Advocacy is often discussed in relation to case management (Public Health Nursing Section, 2001, pp. 263-264).

Seven references recommended advocacy as a nursing intervention (Clement-Murphy, 2001; Cramer & Davidhizar, 1999; Dychkowski, 2000; Eustace et al., 2003; Redding & Selleck, 1993; Robinson, 1999; Wekselman et al., 1995). Two articles made specific recommendations: (a) nurses should advocate for individual patients and families to find information and services; and (b) at the system level, nurses should advocate for more treatment facilities for pregnant women who have alcohol problems and for comprehensive services for families. One reference specifically recommends advocating to eliminate the stigma of FAS.

Social Marketing. Social marketing, a relatively new intervention first introduced in 1971, utilizes commercial marketing principles and technologies for programs designed to influence the knowledge, attitudes, values, beliefs, behaviors, and practices of the population of interest (Public Health Nursing Section, 2001, p. 285). No recommendations were made relating to social marketing.

Policy Development and Enforcement. Policy development and enforcement interventions help place health issues on decision makers' agendas, acquire a plan of resolution, and determine needed resources. Policy development results in laws, rules and regulations, ordinances, and policies. Policy enforcement compels others to comply with the laws, rules, regulations, ordinances, and policies created in conjunction with policy development (Public Health Nursing Section, 2001, p. 313).

While many articles reviewed made recommendations for nurses to become involved in policy development and enforcement to prevent FASD, one article made a specific recommendation that nurses need to be visibly involved on the legislative level to lobby for FAS education and services for families affected by it (Robinson, 1999).

Key Conclusions

The majority of the evidence for nursing interventions to prevent secondary disabilities in children and families affected by FASD is Level VII evidence, opinion of authorities. The literature review revealed no evidence-based nursing interventions to prevent secondary disabilities in FASD but did show an increasing interest in this area. By far, the most frequently mentioned interventions, even in those references with recommendations for preventing secondary disabilities, were nursing interventions to prevent the occurrence of FASD.

Implications for Clinical Practice

The majority of recommendations for preventing secondary disabilities were in the areas of referral and follow-up, screening, case-finding, health teaching, and case management. Nurses working with children and families affected by FASD can review the suggestions made in those areas and compare them with their practice. For example, nurses need to have readily available a referral list of agencies and practitioners who have an interest and expertise in dealing with the problems associated with FASD. They should familiarize themselves with the latest recommendations on identifying and screening for FASD in order to identify populations in their communities at high risk for FASD. By reviewing the suggestions under health teaching, nurses can identify the type of content that should be included in teaching parents strategies that work with children with FASD, including those that help the child maintain control and regain it again when necessary. Finally, recommendations related to case management highlight the need for this intervention and suggest activities that nurses can undertake or refer their clients to another professional who can.

Research

The analysis and synthesis of this literature does suggest many examples of interventions that nurses believe are necessary. This information will be instrumental in moving toward evidence-based nursing interventions to prevent secondary disabilities in FASD. Studying current intervention practices is one part of the model proposed by van Meijel et al. (2004) for developing and testing complex nursing interventions, especially those in which the clients play an important role. According to van Meijel et al.:

The primary goals of studying intervention practices are to identify the different types of interventions that nurses are using, to describe how the different types of interventions are used in practice, and to gain insight into the experiences of providers and clients with available interventions (p. 88).

The analysis of current practices related to nursing interventions identified here can be further developed and refined using scientific methods (van Meijel et al., 2004). They can then be combined with a review of the literature on the nature of the problem (problem analysis) as experienced by children and families affected by FASD as well as a review of the literature on the client's expressed needs and requests for care. The studies by Clement-Murphy (2001), Free et al. (1990), Gardner (2000), and Hess (1996) provide a starting point for understanding the problems and needs as expressed by those affected by FASD. When combined with the findings from other studies of problems and needs and this evidence-based review of nursing interventions, the building blocks necessary to develop and test nursing interventions to prevent secondary disabilities in FASD are in place.

The Evidence-Based Practice section focuses on: the search for and critical appraisal of the "best evidence" to answer challenging clinical questions; single studies with strong clinical practice applications; or evidence-based strategies to improve practice so that the highest quality, up-to-date care can be provided to children and their families. To obtain author guidelines or submit manuscripts, please contact Bernadette Melnyk, PhD, RN, CPNP/NPP, FAAN, FNAP or Leigh Small, PhD, RN-CS, PNP; Section Editors; Arizona State University College of Nursing; PO Box 872602; Tempe, Arizona 85287-2602; 480-965-6431; Bernadette.Melnyk@asu.edu or Leigh.Small@asu.edu

Table 1. Glossary of Terms

Table 2. Level VI Evidence - Single Descriptive or Qualitative Study

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Acknowledgements

The authors would like to acknowledge Sarah Judkiewicz; MS, PNP;, Sharon Murphy, Associate Librarian, University at Buffalo; and the staff at the Substance Abuse and Mental Health Services Administration (SAMHSA) Center for Excellence on Fetal Alcohol Spectrum Disorder (FASD) for their assistance with the initial literature search.

Linda M. Caley, PhD, RN, PNP, NNP, is Assistant Professor, School of Nursing, University at Buffalo, Buffalo, NY.

Nancy Shipkey, MS, RN, PNP, is Doctoral Student and Research Assistant, School of Nursing, University at Buffalo, Buffalo, NY.

Theresa Winkelman, MS, RN, SNP, is Clinical Faculty, School of Nursing, University at Buffalo, Buffalo, NY.

Christine Dunlap, MS, CPNP, RN, graduated from School of Nursing, University at Buffalo, Buffalo, NY.

Sara Rivera, MS, CPNP, RN, is Doctoral Student and Research Assistant, School of Nursing, University at Buffalo, Buffalo, NY.