A FAMILY-CENTERED approach to early intervention (EI) service delivery has been promoted by legislation, research, and policy guidelines (DEC Recommended Practices, 2014; Dunst, Johanson, Trivette, & Hamby, 1991; Dunst, Trivette, & Deal, 1988; Individuals with Disabilities Education Improvement Act [IDEIA], 2004; U.S. Department of Health & Human Services & U.S. Department of Education, 2016). The essential components of family-centered service delivery have been identified as (a) a focus on family strengths and informal supports; (b) open communication; (c) service delivery flexibility; and (d) respect for family diversity and values while promoting family empowerment and decision making (Bailey, Raspa, & Fox, 2012). The latter component related to family diversity and values while respecting family empowerment and decision making may potentially create conflict when families and professionals disagree about needed services and supports. Although these guidelines are important to strive for, EI professionals often may be faced with difficult choices because there may not be a single “best” solution. In fact, research has identified such factors as leadership, training, attitudes, limited resources, and the lack of concrete strategies to guide implementation impacting the delivery of family-centered services (Gooding et al., 2011; Kuo et al., 2012; Piper, 2011).
Research has documented the beneficial effects of family-centered or “family systems” early intervention services on family self-efficacy and support leading to positive effects on child development (Trivette, Dunst, & Hamby, 2010). In a national survey of parents whose children participated in Part C and Part B—Section 619 services, results indicated that active parent involvement yielded more positive ratings of EI services and supports received (Bruder & Dunst, 2015). However, research also has indicated that the context or manner in which EI services are provided is important for positive child and family outcomes to occur (Dunst, Trivette, & Hamby, 2007). The implementation of family-centered services may be difficult at times when resources are limited, family and professional priorities differ, or a myriad of other factors interfere with the intent of family-centered service delivery. Thus, the process of delivering family-centered EI services is critical in order for children and families to receive the maximum benefit of EI.
Other considerations when implementing family-centered services are the potential ethical dilemmas faced by EI professionals. The provision of family-centered services sometimes can be difficult when the priorities and obligations of parents and service providers are in conflict. Professionals' views of needed services and supports are typically based on their own personal and professional experiences, values, and expertise (Boon, 2011). Families' views are shaped by their personal priorities and values and their experiences with professionals. Both groups are generally seeking the best outcomes for children, but families often rely on experienced professionals to help them navigate the service delivery system. In addition, other potential conflicts may relate to professional collaboration (Wesley & Buysse, 2006) and equitable access to services for all families and children (Cheatham, 2011). For example, professional collaboration is compromised when one professional questions the integrity and professionalism of other colleagues because of their practices with children and families. Moreover, limited resources and supports in EI sometimes require service providers to make difficult decisions regarding what and how much can be provided for children and their families (Courtade & Ludlow, 2007).
The very nature of EI services and supports requires EI professionals to make decisions on a daily basis about what they perceive is best for a particular child and family. Often, professionals are faced with questions such as: What is the evidence base for professional recommendations and services? What are the expected professional duties to children, families, employers, and the EI profession? And, what is fair, equitable, and respectful for families, children, and professional team members? Often, these duties can be conflicting, and knowing the appropriate thing to do in certain circumstances can be difficult (Feeney & Sysko, 1986; Freeman & Feeney, 2016).
The conflicts as noted previously require a systematic process for addressing concerns as well as examining the principles/guidelines each professional is following to achieve the best outcomes for children and families. Ethical guidance for EI professionals can be found in policy documents from the Division for Early Childhood (DEC) Code of Ethics (2009) as well as other professional organizations such as the American Speech-Language-Hearing Association (ASHA, 2016) and the American Occupational Therapy Association (AOTA, 2010). These policies provide ethical guidelines for daily practice and decision making outlining core ethical values and principles for individual professions. These policies may be included in personnel preparation program curricula, but little information is available regarding their actual application to practice.
Professional ethical guidelines also need to be considered in the context of evidence-based practices (EBPs) that have been defined as a decision-making process “integrating the best available research evidence with family and professional wisdom and values” (Buysse & Wesley, 2006, p. 12; Buysse, Wesley, Snyder, & Winton, 2006). Evidence-based practice recognizes that multiple sources of knowledge should be integrated to make a decision that will yield the best possible outcome for a particular child and family. The DEC Recommended Practices represent “the best-available empirical evidence as well as the wisdom and experience of the field” (DEC, 2014, p. 2).
Although Codes of Ethics and Recommended Practice guidelines are available for practitioners' use, information on actual practices informed by these policy guidelines is scarce. However, research has been conducted regarding practice dilemmas EI professionals experience related to family-centered services, interdisciplinary collaboration, and systems or policies interfering with evidence-based practices (Kidd, Sánchez, & Thorp, 2005). Below is a summary of the issues portrayed in the EI literature that could lead to potential ethical conflicts.
POTENTIAL ETHICAL ISSUES IN EI
Potential areas in which ethical issues may occur include professional values, priorities, and beliefs influencing the provision of family-centered care (Bruder, 2000), family empowerment or informed consent (Able-Boone, 1996; Turnbull et al., 2007), and home visiting (Bryant, Lyons, & Wasik, 1990). In addition, other ethical conflicts could occur regarding (a) the identification and placement of children who are English language learners in special education and the degree of parent involvement in the process (Cheatham, 2011; Sullivan, 2011); (b) abuse and neglect of children with disabilities (Mitchell, Turbiville, & Turnbull, 1999); and (c) the use of alternative therapeutic approaches with little or no scientific or evidence-based research to support them (American Academy of Pediatrics, 2001; Jacobson, Foxx, & Mulick, 2005; McWilliam, 1999; Rosenbaum & Stewart, 2002). The aforementioned factors can interfere with evidence-based family-centered service delivery.
An additional area that may produce ethical dilemmas is collaboration among professionals with different backgrounds, experiences, and priorities. Research has reported multiple issues impacting collaboration as experienced by consultants and teachers in early childhood settings (Glazier, Boyd, Able, Mallous, & Bell-Hughes, 2016; Wesley & Buysse, 2006). Something as seemingly simple as identifying the focus of an intervention can vary by discipline or agency, with the focus ranging from the child to the family, teacher, or program, potentially creating conflicting goals and priorities (Freeman & Feeney, 2016). Confidentiality, particularly when and with whom to share information is especially difficult when there are multiple adults involved with a child and a family. Conflicting beliefs and values among professionals also can create challenges for families (Hunt, Soto, Maier, Liboiron, & Bae, 2004). For example, some professionals may value one-on-one or pullout instruction for a child with disabilities whereas others may emphasize an inclusive approach to instruction resulting in families receiving conflicting guidance. Another issue of potential conflict is power and authority, or lack of, to initiate change or to hold others accountable (Feeney & Sysko, 1986). Although an itinerant teacher may be responsible for implementing a child's individualized program of instruction and may work with the classroom teacher on how to support the child's learning, there may be limited ways to ensure that the classroom teacher will follow through with the agreed on plan (Glazier et al., 2016). These issues can create tensions between professionals even when they share the goal of supporting the child and the family.
Finally, programmatic or policy constraints can interfere with providing quality and evidence-based services to children and families (Dunst & Bruder, 2006). Research regarding system or administrative-/program-level procedures has indicated that administrative structures focusing on three important factors, vision/leadership, organizational climate, and resources, impact EI service delivery and the manner in which families receive such services (Summers et al., 2001). The manner in which these factors are implemented directly impact the way practitioners provide services and supports to families and young children (Epley et al., 2010). Practitioners may need a balance of autonomy plus supports to practice family-centered EI. Similarly, the Active Implementation Framework (Fixsen, Naoom, Blase, Friedman, & Wallace, 2005) indicates that competency, organization, and leadership drivers need to be in place in order to create a hospitable environment to implement family-centered EBPs. Without such drivers, issues of limited resources, parent–professional conflicts, and interprofessional conflicts become more prominent and difficult to resolve.
Given these issues potentially impacting the delivery of family-centered services and the limited literature addressing them, this article provides an analysis of a focus group study designed to determine EI practitioners' ethical concerns or dilemmas in EI settings serving children ages birth to 5 years with disabilities and how they are resolved in daily contexts. Ethical issues were defined as any issue or practice problem when the right choice for the child and/or family is unclear due to conflicting responsibilities or viewpoints. This definition was derived from previous literature regarding professional ethics in early childhood as well as from relevant professional Code of Ethics guidelines (AOTA, 2010; DEC Code of Ethics, 2009; Kipinis, 1987). Our specific research questions included the following: (1) What do EI practitioners perceive as ethical concerns as outlined in an EI case study example and as described by practitioners from their own experiences? (2) How do they resolve their concerns or dilemmas within their daily practice?
A focus group research design was used to obtain EI professionals' perceptions of their ethical practice dilemmas and the problem-solving strategies they use to address them. This methodology was chosen because focus groups can be particularly useful in gaining professional perceptions about potential issues, and the group interactions can promote a range of ideas and experiences (Krueger & Casey, 2009). The focus group approach allowed us to be systematic in our data collection while flexible by exploring “naturally occurring, ordinary events in natural settings, so that we have a strong handle on what ‘real life’ is like” (Miles & Huberman, 1994, p. 10; Miles, Huberman, & Saldana, 2013). Thus, this approach allowed us to capture a range of EI professionals' views of ethical practice dilemmas and how they were typically resolved in EI daily practice.
Settings, participants, and recruitment
Eight focus groups were conducted in a southeastern state across a variety of EI program settings serving young children ages birth to 5 years with disabilities. The programs included three developmental day centers serving young children with disabilities ages 6 weeks to 5 years providing both home- and center-based services. These centers employed full-time preschool teachers and Part C home visitors and contractual allied health professionals who provided occupational and speech and language therapy. In addition, focus groups were conducted in two EI diagnostic settings whose primary focus was to conduct eligibility evaluations and provide service coordination for children ages birth to 5 years. Staff in the diagnostic settings included psychologists, allied health professionals, and developmental specialists who provided service coordination. The remaining three programs were blended Part B preschool programs serving young children with disabilities and young children who met the Head Start eligibility classification. Preschool program staff included teachers, occupational and speech and language therapists, and social workers providing inclusive preschool services in classrooms with a maximum of 18 children. Of the eight programs in which the focus groups were conducted, five served children and families in urban settings and the remaining three were programs serving children and families in rural settings.
Once university institutional review board and agency approval was obtained, all potential participants in each program were given an invitation to participate in the focus group study. The invitation provided an overview of the study, a consent letter, a sample ethical dilemma, and the planned focus group questions. Each participant was reimbursed $35 for his or her participation in the study. A total of 82 professionals participated whose primary roles included (a) teachers (72%); (b) allied health professionals (12%); (c) social workers (7%); (d) administrators (3.7%); and (d) one psychologist (1.2%). Three (3.7%) participants did not identify their particular role. The teacher participants included (a) Part C early interventionists (41%); (b) lead preschool teachers (49%); and preschool assistant teachers (10%). The majority of the participants were female (95%). Of the total participants, 72% were Caucasian, 22% were African American, and 4% were of Latino descent. Their years of experience included the following: 33% had 1–5 years, 34% had 6–15 years, and 28% had 15 or more years. Four (4.9%) respondents did not indicate their years of experience and two (2.4%) did not state their racial/ethnic background.
After discussing the focus group purpose and reviewing general focus group guidelines, participants were presented with a case study depicting an EI practice dilemma describing conflicting parental and professional views regarding a child's services. The case study was intended to provide an example practice dilemma with ethical implications in order to solicit initial discussions regarding ethical dilemmas in practice. The case study was derived from an ethnographic interview study in which parents and educational professionals were asked to identify ethical dilemmas (Able-Boone, 1996). Following the case study discussion that lasted approximately 15–20 min, the participants were asked to describe their own ethical practice dilemmas and typical resolution strategies. The sample case study and the focus group discussion protocol are included in Table 1.
The research team across all focus groups included a faculty advisor who served as the focus group facilitator and two research assistants who were doctoral students in EI and had been trained in qualitative data collection and analysis. A standard protocol was used as approved by the institutional review board that included probes and questions to ensure that each group utilized the same procedures for encouraging equal participation among focus group members and continued discussion of ethical dilemmas and resolution strategies.
The focus groups ranged from eight to 16 members and lasted approximately 1–1.5 hr. Employees in the EI settings agreed to participate in the groups after work hours at their work settings. Because of this arrangement, the focus group participant size ranged due to degree of interest or availability at each setting. A round table setting was used for the focus groups with table and chairs arranged so that participants could see and talk with each other as well as the moderator. Field notes were taken by the research team during the focus groups to document the contextual elements and group dynamics impacting the interaction of focus group members and as well to aid in the interpretation of the data (Creswell, 2007). Understanding and recognizing the focus group contexts were essential because knowledge and understanding are built not only on people's talk but also on making sense of situated meanings (Emerson, Fretz, & Shaw, 2001). Contextual elements such as the time of day, the presence of a supervisor as a member of the group, and prior familiarity and shared experience, as well as size of group seemed to affect the group dynamics and participation in the discussion. For example, participants were more fatigued when the group was held at the end of the work day and were slower to begin talking and become engaged. In the largest focus groups (14–16 members), there tended to be several group members who participated minimally. The presence of a supervisor played a variable function, in some cases appearing to inhibit the group members' responses whereas in other groups appearing to lend support and facilitate participation. Familiarity seemed to have a positive impact on group dynamics. In groups in which the members knew each other and had previously established relationships, the familiarity seemed to promote an ease of participation.
All focus groups were audio-taped and transcribed verbatim. Note takers reviewed each transcribed interview to determine its accuracy. In addition, all participants were mailed copies of the transcribed interviews as a member check procedure to determine whether the transcripts accurately reflected the group's discussion. In two cases, participants provided additional information regarding a particular issue and that information was used in the final data coding and analysis.
The interview data were coded using a constant comparative method in which themes and subcategories were constantly revised and recoded as new themes and categories emerged from the interviews (Strauss & Corbin, 1998). A constant process of organizing and reviewing the data was used to cluster the data into discrete categories or domains. This process allowed us to analyze data from the early focus groups while later focus groups were being conducted. Codes were continually refined to ensure that the interpretations were thorough and consistent across the interviews.
As the data collection and analysis process proceeded, all categories were compared and contrasted and then the primary content was grouped into major themes. For instance, when the participants discussed their own practice dilemmas, they were organized into three main categories: (1) parent–professional dilemmas; (2) interprofessional dilemmas; and (3) programmatic/policy-related dilemmas. These categories were determined by consistently exploring the focus group data. Each category had subcategories related to the particular issue. For example, interprofessional dilemmas included issues related to disagreement among colleagues regarding services and supports, uncoordinated services, and concern regarding colleagues' credibility. Table 2 provides an example of how the thematic coding evolved from the focus group discussions.
The primary data coder was the principal investigator (PI) with extensive experience in qualitative coding and analysis. The secondary data coder was a graduate student who had been trained in qualitative coding and analysis by the PI and who had taken graduate-level qualitative method courses. All data were independently coded by the above and interrater reliability coding was conducted (House, House, & Campbell, 1981). This process ensured that the specific delineation of the categories was consistent and congruent. The reliability procedure served as an interobserver agreement index in which the data coders sought to reach agreement on thematic categories and the inclusion of specific data into those categories. Agreement was sought on the description or categorization of the data rather than the frequency of the data as is done in experimental studies. The number of agreements and disagreements was calculated per page and totaled for each focus group interview. The average interrater reliability was 86%. For those data in which agreement was not initially obtained, peer debriefing was used to determine agreement of the inclusion of the data into categories. The combination of the member check procedure, peer coding, and debriefing processes helped ensure that the analysis and interpretation were done systematically and reflectively (Brantlinger, Jimenez, Klingner, Pugach, & Richardson, 2005; Maxwell, 2012).
The focus group data are presented relative to the participants' reactions to the sample case study (see Table 1) and discussion of their own ethical practice dilemmas and resolution strategies. As they discussed their own dilemmas and resolution strategies, the participants also included recommendations for additional supports needed in resolving such issues in their practice. The information later provides a summary of the major themes and categories emerging from the data analysis.
Case study reactions
Participants raised several issues regarding the case study. All recognized that despite IDEIA (2004) requiring a transition plan from the preschool to the kindergarten program, the parents' lack of permission for Ricardo's continued services in the receiving school system would be an impediment. The foremost issue was whether the teacher's obligation should be to the child or the family. Their dilemma related to respecting the family's wishes and priorities concerning their child versus considering the child's best interests as perceived by the professionals. Many participants commented that if Ricardo did not enter kindergarten with an Individualized Education Program (IEP), the process of obtaining eligibility for services within the school system would very likely take some time while Ricardo continued to lag behind his peers. As a preschool teacher emphasized, “this child will be starting with failure rather than success in his new environment.”
Furthermore, the participants even questioned whether the parents' decision might border on child neglect issues, given that Ricardo might be denied services. This position was represented by the following comment from an allied health professional:
If this concerned medical treatment, a doctor would supersede the family's choice—educational treatment does not have the gravity or importance of some medical treatment decisions but not agreeing to needed services and supports could harm this child for a long time in his educational process.
Thus, the quandary of respecting the family's priorities while also considering the child's best interests was highlighted coupled with the issue of potential parental neglect.
On the contrary, participants voiced the importance of recognizing and respecting the family's values and confidentiality. Participants expressed that perhaps in the family's culture, children with disabilities are not typically labeled or “singled out.” Thus, the school system may be asking the family to do something for their child that conflicted with their child-rearing values. Participants also voiced concerns about potential miscommunication between the family and the current EI team. They suggested that perhaps the family did not understand the intent of the accommodations and specialized interventions for Ricardo. The parents may not understand that the IEP with its services and supports could help him be more successful in kindergarten. Suggested strategies to overcome this issue included trying to better understand the parents' viewpoints via open communication and offering support. Other strategies included connecting parents with other parents from similar backgrounds who had experienced similar issues with their children. Another strategy included using cultural guides who could help the educational professionals and parents understand each other's perspectives.
Finally, the participants raised the issue of fairness to the other children and the teacher in Ricardo's kindergarten class. It was expressed that Ricardo's learning needs could be so demanding of the teacher's attention that the other children would not be provided the education they deserved. As stated by a preschool teacher, “There could be almost a whole year of kindergarten where the teacher is frustrated, Ricardo is disengaged and frustrated, and the other children in the class are not getting what they need.” All participants agreed that Ricardo's lack of supports would compromise the teacher's ability to address the needs of Ricardo and the other children in the class.
After the vignette was presented and discussed, the participants were more talkative and willing to share their own ethical practice dilemmas and how they resolve those in daily practice. The vignette discussion served as an “icebreaker” or catalyst for discussion of participants' own experiences. Dilemmas regarding parent and professional conflicts, interprofessional conflicts, and programmatic policies interfering with appropriate and effective services were the major issues of concern. The following sections provide information regarding their major concerns and resolution strategies used.
Participant-generated early intervention ethical dilemmas
The focus group participants identified ethical dilemmas including competing interpretations of appropriate practices for promoting children's best interests and different cultural values and priorities related to child rearing and education between parents and EI professionals. Other dilemmas focused on interprofessional conflicts such as lack of respect for colleagues' behavior and expertise and disagreement regarding appropriate services and supports for children and families. Finally, conflicts regarding EI policies or programmatic procedures interfering with best practices were raised. The following provides examples of these dilemmas as described by the focus group participants.
Parent and professional conflicts
Participants voiced their concerns regarding differing values and priorities parents hold regarding child rearing and children's development and education as compared with professionals' priorities. Examples of different priorities regarding child rearing included the following comment from a Part C home visitor:
I visited a home where the mother has her toddler in the play pen without much stimulation. She jokingly would say, “he is in prison”—I felt so sorry for the child—I wanted to pick him up and run away.
Other professionals voiced their concerns about parents spanking their young children. These concerns caused the early interventionists to question whether they should report parents for child neglect or abuse or if they should strive to develop a relationship with the parent to promote more appropriate parenting practices. Similar concerns related to parents seemingly not viewing EI as a priority for their child. Professionals noted excessive absences from the preschool program or parents not being home during scheduled home visits. An EI home visitor expressed her concern as: “Where do we draw the line when a family behaves inappropriately? They say that they will be home but we keep coming and they are not at home?”
Other issues identified related to linguistic differences between EI personnel and family members, resulting in communication disparity and inequity for the parents who were non-English speakers. Participants raised the question, “Is it ethical to provide services to children when you are not quite sure that their parents understand the nature of services?” It was reported that translators were not always available for developmental and diagnostic reports in a timely manner. As a preschool teacher noted,
We use an interpreter with our Spanish speaking families in IEP meetings. But the reports are typically in English at first. So, even if a report has been talked about and read to the parents, it makes me feel bad.”
Participants noted that even with an interpreter, the meaning and implications of a report often were not fully understood. The participants were concerned that parents might not have time to understand and reflect on the information concerning their children in diagnostic reports or during IEP or Individualized Family Service Plan (IFSP) meetings.
In addition to conflicts related to cultural and linguistic differences, professionals raised issues regarding major differences in parental preferences for services. One such difference related to non–evidence-based interventions for children. Such issues were described by an allied health professional as the following:
A mother was going to an autism support group and there were many different ideas shared with her about what to do for her child. She decided to take him off foods with gluten and lactose. For very young children, this is not necessarily a good thing—he would come to our program looking very pale and nauseous. It was so hard to see him like that—we didn't know what to do.
Similarly, professionals referred to some parents “who do a lot of shopping to find out what is best for their child.” Consequently, some professionals were asked to put non–evidence-based treatments on children's IFSPs and IEPs such as acupuncture and mineral and vitamin supplements.
Professionals perceived that in many cases they had different priorities for children than parents. This caused professionals to struggle with seemingly conflicting obligations such as providing family-centered services while also trying to provide evidence-based services and supports to promote children's developmental success. Other issues regarding service provision related to interprofessional conflicts and lack of collaboration interfering with effective services and supports for children and families.
Various concerns were raised about working with other professionals who were viewed as noncollaborative and whose competence was questioned. Concerns included issues such as professionals not agreeing about parents' roles in EI, effective practices in inclusive settings, and/or children's diagnoses and eligibility for services.
In terms of disagreements regarding parents' roles, participants noted that some professionals did not provide opportunities for parents to be active in their child's EI services. As an allied health professional explained “This person does not give parents enough information—she makes decisions for the parents and tells them what should be done for their child regarding therapies and medical treatment.” Participants felt that such practices reflected a “professional knows best” attitude. Instead, they advocated for strong parent–professional partnerships in which both parents and professionals have equitable access to information. Similar issues were raised related to professionals who “talked down” to parents or who provided parents with information concerning their child using a lot of professional jargon. A related concern was when professionals provided parents with technical reports with little or no opportunity for the parents to ask questions or seek clarification.
Other concerns when working with interdisciplinary professionals related to effective practices in inclusive settings. As expressed by preschool providers, “Often private therapists recommend to the parent that the only therapy model that really works is to pull the child out and drill, drill, drill but we try to do integrative therapy in our classrooms.” These professionals discussed how difficult it was to explain to parents that a transdisciplinary, integrative service delivery model currently represents what is viewed as recommended practice without seeming to “put down” or negate therapists' recommendations.
Questions regarding colleagues' wisdom or expertise related to children's diagnoses and eligibility for services also were raised. Participants discussed issues in which colleagues shared a diagnosis related to a child's developmental delays without any concrete multidisciplinary evaluation to support the assumed diagnosis. As a social worker who provided Part C services explained, “what the parent hears is the professional's opinion when that professional is not qualified to give a diagnosis and that information or opinion is shared with the parent without consulting with our team.” This was a particularly salient issue when it related to the diagnosis of autism spectrum disorder. Thus, it was concerning to professional team members when unsubstantiated information was shared with parents. Specifically, participants questioned the credibility of their colleagues when information was shared with parents outside the professionals' area(s) of expertise.
Programmatic and policy concerns
The major programmatic or policy-related dilemmas were connected to how parents may have inequitable access to services. Professionals were most concerned that educated, informed parents got more and better EI services for their children than parents who were less educated and lacked advocacy skills. It was expressed that programmatic policies and procedures could interfere with the equitable access to supports for all children. Examples included children not getting the services they needed in a timely manner because IEP meetings were not held at convenient times for parents to attend. Thus, services were delayed because of parental inability to attend the initial conference.
Moreover, participants referred to their agencies as the “gatekeepers of services” and were concerned that parents were given limited access to services. One example provided by a preschool teacher included the following:
We were serving a child with spina bifida who needed to be with her peers who were typically developing. Her mother was single and worked full time but our program only offered a more restrictive placement option for her child because of convenience and slots available. This mother did not know how to ask for other more appropriate and inclusive services for her child.
Another gatekeeping function included the myriad of service providers with whom parents had to collaborate. This was explained by an allied health professional as follows:
We can have a team working with one child and there's no funding to pay for everyone to coordinate and work together. This one child could wind up getting four very different services or not getting appropriate services at all because there are too many gatekeepers.
Participants recognized that current funding and programmatic structures impeded team building and coordination. Clearly, these early interventionists saw the need for someone such as a service coordinator to assist parents in navigating the service system but were concerned with the lack of adequate resources for effective service coordination and team collaboration.
These dilemmas focusing on parent–professional and interprofessional conflicts and policy/programmatic-level issues were of great concern. Many of these issues resonated with all participants. The participants also problem solved together about how many of these issues could be resolved in daily practice and provided examples of their daily problem-solving strategies as described below.
Focus group participants identified several resolution strategies used on a daily basis to encourage collaboration and partnerships with families and professional team members. Those strategies included (a) recognizing and reflecting on one's own values and biases; (b) providing family members with timely and accurate information regarding their children, child development, appropriate educational services, and how to access those services; and (c) engaging in open communication with families and colleagues.
Participants recognized the need for self-reflection and understanding one's own viewpoint particularly when working with families. As an allied health professional emphasized,
You need to take time to reflect on your own values, wishes, and biases. So when you get into a situation, you can stop and think: Am I somebody who is going to tell this mother what is right or wrong for her child? Is that really appropriate?
Many participants shared how some of their agencies hold staff meetings on a regular basis for the discussion and resolution of dilemmas. Participants reflected on these meetings as a time to “help us consider multiple perspectives and to think more objectively and fairly.” Thus, the need for self-awareness and respect for multiple viewpoints while finding a “common ground” were acknowledged as critical components of effective problem solving.
Participants also valued a family-centered approach by supporting families in becoming informed decision makers for their children. As a Part C home visitor highlighted, “Empowering families to become advocates by presenting parents with information and stepping back for parents to make decisions, but leaving the door open for parents to come back for more support and information is essential.” Also, the importance of partnering with families who could serve as models and mentors for other families in the advocacy process for their children was stressed. This family-centered approach espoused esteem for the family as exemplified by the following comment from a Part C home visitor:
We have to respect the opinions of the parent. Realizing that the parent knows their child best, has their best interest in mind, and that any decision they make for their child is the right decision for that child and family.
Resolution strategies related to interprofessional and policy or programmatic-level conflicts included honest and open communication between team members in order to alleviate any issues interfering with quality and equitable services for all children and families. Ongoing and open communication is also needed to create a forum for reflective problem solving. Although difficult to achieve, all participants emphasized the need to “communicate as a team while working together with colleagues and family members to come to the best resolution for the child.” Thus, time for reflection and problem solving was critical for resolving issues of concern related to children, families, and team members.
The current study sought to gain a range of perspectives early interventionists hold regarding their ethical practice dilemmas and resolution strategies. The ethical concerns participants shared were similar to issues highlighted in previous research including disagreements or conflicts between professionals and families regarding what is best for the child, interprofessional conflicts, and programmatic and policy issues interfering with recommended practice. Based on our research, early interventionists reported struggles regarding (a) navigating the differences between family priorities and their own priorities for children; (b) collaborating with colleagues; and (c) following program practices and policies that seem to conflict with children's and families' best interests. The issue of balancing one's professional obligations with conflicting responsibilities to children, families, and colleagues was evident in participants' dilemmas. The participants described their dilemmas as challenges to achieving family-centered evidence-based services.
The data highlighted that early interventionists are faced with many issues in service delivery that do not always have prescribed solutions (Kidd et al., 2005). The various stakeholders in EI bring different values, levels and types of expertise, and life experiences to the intervention process. An ethical dilemma can often result from a combination of incomplete information about a situation and strong reactions from professional and family team members. Early interventionists highlighted the importance of self-awareness and reflection of their own and others' viewpoints. The process of gathering and understanding information so that all can make an informed decision regarding services for children and families was considered essential. Participants valued open and collaborative problem solving among professionals and parents. Thus, EI professionals need opportunities and support to engage in a systematic approach to reflection and problem solving.
Given the aforementioned guidelines, supportive work environment for early interventionists while they develop and improve their practices is critical (Curry, 2008). In fact, the community of practice model proposed by Lave and Wenger (1991) referring to “groups of people who share a concern, a set of problems, or a passion about a topic, and who deepen their knowledge and expertise in this area by interacting on an ongoing basis” (Lave & Wegner, 1991, p. 4) could serve as a model for problem solving. Furthermore, early interventionists can resolve many of their ethical dilemmas by engaging in collaborative conversations with family members and other professionals while using professional Codes of Ethics as guidelines in their discussions.
Communities of practice can link EI practitioners either in a face-to-face or virtual format providing a forum for information, support, and reflection (Buysse, Sparkman, & Wesley, 2003; Odom, 2009). The problem-solving process can be enhanced by a focus on evidence-based practice and recent EI policies (U.S. Department of Health & Human Services & U.S. Department of Education, 2016) and ethical practice guidelines provided by professional organizations. The following provides examples of how practitioners might use professional Codes of Ethics with recommended or evidence-based practices (e.g., DEC Recommended Practices, 2014) in their collaborative problem-solving processes with families and other professionals.
Use of Professional Codes of Ethics
One mechanism for resolution of ethical dilemmas is the use of professional Codes of Ethics that can serve as a decision-making guide about what is a more or less effective course of action when neither is obvious. Professional Codes of Ethics can serve as guidelines in the deliberative process. These guidelines can assist in highlighting critical considerations and in selecting the most appropriate evidence-based practices for all stakeholders. These codes are not intended to be instructional manuals but a framework for making decisions in which the most acceptable and least problematic alternatives for children, family members, professionals, and other relevant stakeholders are identified (Freeman & Feeney, 2016). Below are examples of how EI professionals might use professional Codes of Ethics related to parental informed consent and professional collaboration. These were two major issues highlighted in our focus group discussions.
The struggle of providing equitable services for children when their parents do not have the experience or knowledge base to advocate for their children was raised. The inequity in knowledge between parents and professionals was of paramount concern. Given the aforementioned guidelines, parental informed consent based on the principle of self-determination should be our goal that is highlighted in the AOTA (2010) Code of Ethics as well as DEC Code of Ethics (2009) related to responsive family services. The guideline from the DEC Code of Ethics states: “We shall empower families with information and resources so they are informed consumers of services for their children” (DEC Code of Ethics, 2009, emphasis added). Similarly, the DEC Recommended Practices state that practitioners should “provide families with up-to-date, comprehensive and unbiased information in a way that the family can understand and use to make informed choices and decisions” (DEC, 2014, p. 9).
Given the aforementioned ethical guidelines, questions to consider when trying to understand the family's perspective and achieve true informed consent might include the following: (1) Is the family fully informed about the child's strengths, emerging skills, and needs? (2) Have all possible evidence-based service and placement alternatives been explored, shared, and explained? (3) Does the family understand the possible effects of services and no services on the child's growth and development? (4) Has the family had time to reflect and consider the different alternatives? All of these questions involve careful consideration of and respect for the family's cultural or religious preferences and values as well as their home language. Although professionals may not always agree with the family's identified priorities, careful reflection and discussion may lead to what is referred to as “third space” or a “common ground” as noted by the focus group participants (Barrera, Corso, & Macpherson, 2003). This process may allow families and professionals to move forward while respecting all viewpoints.
Another major ethical dilemma highlighted by professionals was related to achieving and maintaining professional collaboration. The ASHA (2016), National Association of Social Work (NASW, 2008), and DEC Codes of Ethics (2009) highlight the importance of professional collaboration for delivering the “highest quality of care.” In fact, these professional codes provide guidelines for resolving interprofessional conflicts and dealing with issues in which children's and families' well-being is compromised. In the deliberation process, it is important to consider that the professionals' perspectives may be dependent on their experiential and educational backgrounds. For instance, a therapist may not have had the experience of implementing an integrated therapy approach within a classroom or home-based setting. However, our recommendations to families should be based on evidence—scientific and clinical information and taking into account the family's wisdom and values and not on what we personally believe is good or right for children and families. Professional Codes of Ethics can assist in resolving these kinds of differences among colleagues. For example, the NASW Code of Ethics states: “Social workers should cooperate with social work colleagues and with colleagues of other professions when such cooperation serves the well-being of clients” (NASW Code of Ethics, 2008, 2.01c, p. 9). In addition, the DEC Recommended Practices included five specific practices related to teaming and collaboration to guide practitioners and families in EI.
Implications for professional development
The opportunity for EI professionals to engage in collaborative dialogues with one another and with families can assist in the decision-making process about how to achieve the most acceptable outcomes for children and families. In addition, reflective problem solving about issues of daily practice within a professional ethics education framework in preservice and in-service professional development activities can be useful (Freeman & Feeney, 2016). Indeed, research has demonstrated that when ethics is a component of preservice preparation, teachers have an increased sense of self-efficacy and commitment to their profession in addition to having more skills related to collegial collaboration and classroom management (Boon, 2011; Daniels, Mandzuk, Perry, & Moore, 2011). Developing professionals' skills in ethical deliberation could assist early interventionists as they deal with the conflicting responsibilities of daily practice. It has been recommended that effective strategies for teaching ethics include (a) exploration of personal values; (b) awareness of potential ethical issues; (c) understanding the difference between personal values and professional ethics; and (d) becoming familiar with relevant professional Codes of Ethics (Freeman & Feeney, 2016). Increased opportunities for preservice and in-service EI professionals to examine professional Codes of Ethics and use them as guidelines in resolving practice dilemmas could help in realizing the full intent of family-centered services as outlined in IDEIA.
There also is a need to address the knowledge and skill level of early interventionists related to the potential legal implications of ethical issues (Carr & Santos, 2017). As evidenced in our data, practitioners struggled with balancing family-centered practices with dilemmas regarding possible neglect of young children. Thus, professional development focused on ethical and legal issues is needed in order for EI professionals to make informed and wise choices for young children with disabilities and their families.
Limitations and future research
Several limitations to this study suggest future directions for research. First, this study did not address the individual disciplines' views of ethical dilemmas. The study's purpose was to gain a range of perspectives and not to compare and contrast perspectives across professional roles or disciplines. Our sample is overrepresented by teachers who provided direct services to young children with disabilities either in home or center-based settings. A further understanding of the ethical deliberation process across multiple disciplines would be useful for the field. For instance, social workers as opposed to occupational or physical therapists might view ethical conflicts differently and use different resolution strategies. More research is needed regarding specific ethical deliberation practices used by the different disciplinary professions. Such research could inform the field of effective strategies used within and across disciplines and roles in the EI process helping us to achieve more informed and systematic decision-making processes.
Another limitation of the study is that the early interventionists who chose to participate most likely represented those professionals who tended to be reflective about their ethical concerns in daily practice. Their perceptions may be different from other professionals; thus, generalizations about ethical practice dilemmas should be made cautiously. Second, the ethnic/racial distribution of our sample is overrepresented by White professionals and underrepresented by professionals from other racial or ethnic groups. Again, future studies might address the influence of participants' cultural, linguistic, religious, and/or ethnic backgrounds on their views of ethical dilemmas and resolution strategies.
Finally, to truly understand the ethical dilemmas encountered in EI service delivery, an examination of families' viewpoints and dilemmas is also needed. Further research investigating families' views of dilemmas regarding their children's services and supports, from their vantage points, would elucidate the unique parental role in decision making. Comparison of parental and professional perspectives regarding ethical issues could help in the resolution of dilemmas leading to more equitable and fair solutions for all.
The ethical concerns reported here are just a few of the many that arise in EI service delivery. They included issues regarding conflicting priorities between parents and professionals and among professionals as well as conflicts regarding programmatic policies interfering with evidence-based family-centered services. As early interventionists grapple with these dilemmas, we need to be reminded that “ethics is nothing more than systematic critical reflection about our obligations” (Kipinis, 1987, p. 27). Professional Codes of Ethics and evidence-based practices can provide a framework for our ongoing reflections. Systematic and reflective discussion among professionals and family members requires an attitude of respect for each position—the professionals', the family's, and most importantly, the child's. Taking the time to have these types of discussions before dilemmas occur (or as they occur) may contribute to more positive outcomes for all involved, most particularly, the children and families we serve.
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