Genetic Counselor Perceptions of Genetic Counseling Session Goals: A Validation Study of the...

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ORIGINAL RESEARCH Genetic Counselor Perceptions of Genetic Counseling Session Goals: A Validation Study of the Reciprocal-Engagement Model Julianne E. Hartmann & Patricia McCarthy Veach & Ian M. MacFarlane & Bonnie S. LeRoy Received: 14 May 2013 /Accepted: 9 August 2013 # National Society of Genetic Counselors, Inc. 2013 Abstract Although some researchers have attempted to de- fine genetic counseling practice goals, no study has obtained consensus about the goals from a large sample of genetic counselors. The Reciprocal-Engagement Model (REM; McCarthy Veach, Bartels & LeRoy, 2007) articulates 17 goals of genetic counseling practice. The present study investigated whether these goals could be generalized as a model of prac- tice, as determined by a larger group of clinical genetic coun- selors. Accordingly, 194 genetic counselors were surveyed regarding their opinions about the importance of each goal and their perceptions of how frequently they achieve each goal. Mean importance ratings suggest they viewed every goal as important. Factor analysis of the 17 goals yielded four factors: Understanding and Appreciation, Support and Guidance, Facilitative Decision-Making, and Patient- Centered Education . Patient-Centered Education and Facilitative Decision-Making goals received the highest mean importance ratings. Mean frequency ratings were consistently lower than importance ratings, suggesting genetic counseling goals may be difficult to achieve and/or not applicable in all situations. A number of respondents provided comments about the REM goals that offer insight into factors related to implementing the goals in clinical practice. This study pre- sents preliminary evidence concerning the validity of the goals component of the REM. Keywords Genetic counseling goals . Reciprocal- Engagement Model . Models of practice . Process goals . Outcome goals . Genetic counseling models A number of theorists have articulated goals of practice in their proposed definitions of genetic counseling (e.g., Fraser 1974; Resta et al. 2006). The essence of those goals has remained fairly constant with each new definition, suggesting consensus regarding the general nature of services genetic counselors provide. For instance, an early definition by Fraser (1974) describes genetic counseling as a process whose purpose is to educate patients about medical facts, heredity, recurrence, and patient options, in addition to helping them make appropriate decisions and adjust to a genetic condition in the family. A more recent definition of genetic counseling published by the National Society of Genetic Counselors(NSGC) Definition Task Force (Resta et al. 2006, p. 77) defines genetic counseling as: “…the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease. This process inte- grates the following: & Interpretation of family and medical histories to assess the chance of disease occurrence or recurrence. & Education about inheritance, testing, management, pre- vention, resources and research. J. E. Hartmann University of Nebraska Medical Center, Omaha, NE, USA P. M. Veach(*) Department of Educational Psychology, University of Minnesota, 250 Education Sciences Building, 56 E. River Road, Minneapolis, MN 55455, USA e-mail: [email protected] I. M. MacFarlane Department of Educational Psychology, University of Minnesota, Minneapolis, MN, USA B. S. LeRoy Department of Genetics, Cell Biology, and Development, Institute of Human Genetics, University of Minnesota, Minneapolis, MN, USA J Genet Counsel DOI 10.1007/s10897-013-9647-6

Transcript of Genetic Counselor Perceptions of Genetic Counseling Session Goals: A Validation Study of the...

Page 1: Genetic Counselor Perceptions of Genetic Counseling Session Goals: A Validation Study of the Reciprocal-Engagement Model

ORIGINAL RESEARCH

Genetic Counselor Perceptions of Genetic CounselingSession Goals: AValidation Studyof the Reciprocal-Engagement Model

Julianne E. Hartmann & Patricia McCarthy Veach &

Ian M. MacFarlane & Bonnie S. LeRoy

Received: 14 May 2013 /Accepted: 9 August 2013# National Society of Genetic Counselors, Inc. 2013

Abstract Although some researchers have attempted to de-fine genetic counseling practice goals, no study has obtainedconsensus about the goals from a large sample of geneticcounselors. The Reciprocal-Engagement Model (REM;McCarthy Veach, Bartels & LeRoy, 2007) articulates 17 goalsof genetic counseling practice. The present study investigatedwhether these goals could be generalized as a model of prac-tice, as determined by a larger group of clinical genetic coun-selors. Accordingly, 194 genetic counselors were surveyedregarding their opinions about the importance of each goaland their perceptions of how frequently they achieve eachgoal. Mean importance ratings suggest they viewed every goalas important. Factor analysis of the 17 goals yielded fourfactors: Understanding and Appreciation, Support andGuidance, Facilitative Decision-Making, and Patient-Centered Education . Patient-Centered Education andFacilitative Decision-Making goals received the highest meanimportance ratings. Mean frequency ratings were consistentlylower than importance ratings, suggesting genetic counseling

goals may be difficult to achieve and/or not applicable in allsituations. A number of respondents provided commentsabout the REM goals that offer insight into factors related toimplementing the goals in clinical practice. This study pre-sents preliminary evidence concerning the validity of the goalscomponent of the REM.

Keywords Genetic counseling goals . Reciprocal-Engagement Model . Models of practice . Process goals .

Outcome goals . Genetic counseling models

A number of theorists have articulated goals of practice intheir proposed definitions of genetic counseling (e.g., Fraser1974; Resta et al. 2006). The essence of those goals hasremained fairly constant with each new definition, suggestingconsensus regarding the general nature of services geneticcounselors provide. For instance, an early definition byFraser (1974) describes genetic counseling as a process whosepurpose is to educate patients about medical facts, heredity,recurrence, and patient options, in addition to helping themmake appropriate decisions and adjust to a genetic conditionin the family. A more recent definition of genetic counselingpublished by the National Society of Genetic Counselors’(NSGC) Definition Task Force (Resta et al. 2006, p. 77)defines genetic counseling as:

“…the process of helping people understand and adaptto the medical, psychological and familial implicationsof genetic contributions to disease. This process inte-grates the following:

& Interpretation of family and medical histories to assess thechance of disease occurrence or recurrence.

& Education about inheritance, testing, management, pre-vention, resources and research.

J. E. HartmannUniversity of Nebraska Medical Center, Omaha, NE, USA

P. M. Veach (*)Department of Educational Psychology, University of Minnesota,250 Education Sciences Building, 56 E. River Road, Minneapolis,MN 55455, USAe-mail: [email protected]

I. M. MacFarlaneDepartment of Educational Psychology, University of Minnesota,Minneapolis, MN, USA

B. S. LeRoyDepartment of Genetics, Cell Biology, and Development, Institute ofHuman Genetics, University of Minnesota, Minneapolis, MN, USA

J Genet CounselDOI 10.1007/s10897-013-9647-6

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& Counseling to promote informed choices and adaptationto the risk or condition”

Although written over 30 years apart, both definitionsclearly imply the role of a genetic counselor is to provideinformation and counsel in ways that will help patients and/orfamilies determine the best course of action for their uniquesituation.

Studies of Genetic Counseling Practice Goals

Some studies provide empirical support for proposed geneticcounseling goals. For instance, Lobb and colleagues (Lobbet al. 2001) surveyed 29 providers of genetic counselingservices in Australia to help identify goals for breast cancerconsultations. Two prevalent goals involved identifying theindividual needs and concerns of the patient, and providing anindividual and family risk assessment. When respondentswere asked to elaborate on the importance of counseling skills,many acknowledged a counseling approach to a session isequally important, if not more so, than an information-basedapproach, but that both are necessary.

Bernhardt et al. (2000) interviewed 16 experienced geneticcounselors, either individually or in focus groups, and askedthem to articulate genetic counseling goals. Their participantsidentified attempting to meet the client’s expectations as a“universal” process goal for genetic counseling sessions.They further indicated genetic counselors achieve this goalby ensuring patient questions have been answered, givinginformation, and providing emotional support. In contrast,they asserted that outcome goals vary across patients andreferral reasons. Based on a review of research on the goalsof genetic counseling practice, Biesecker (2001) similarlyargues a “unifying goal for all genetic counseling may notbe realistic or useful” (p. 326). She concludes there are mul-tiple goals of genetic counseling which vary across geneticcounseling specialties.

Wang et al. (2004) attempted to establish a framework withwhich to evaluate genetic counseling services by reviewingcurrent literature about genetic counseling goals and defini-tions. The authors maintain it is essential to first define geneticcounseling goals in order to determine processes and out-comes by which to judge the effectiveness of services provid-ed. They propose three broad categories within which toclassify genetic counseling goals: (1) educate and informclients of the genetic condition, (2) provide support and helpthem cope, and (3) facilitate informed decision-making. Theauthors, however, also say the goals of counseling will vary asa function of the genetic condition in question as well asindividual differences among patients.

While previous studies of genetic counseling practice goalshave yielded similar results, none are based on the consensus

of a large sample of genetic counselors. More researchgrounded in a specific model of genetic counseling practiceand including larger samples is needed in order to empiricallyestablish the goals of practice. The proposed Reciprocal-Engagement Model (REM; McCarthy Veach et al. 2007)articulates 17 goals of genetic counseling practice. The presentstudy investigated whether these goals could be generalized asa model of practice by assessing genetic counselors’ opinionsabout their importance and their perceptions of how frequentlythey achieve each goal.

Models of Practice for Genetic Counseling

Genetic counseling is a complex endeavor that traditionallyhas drawn from models of practice in both healthcare andpsychology (McCarthy Veach et al. 2007). Two prominentmodels are a “teaching model” common to healthcare, and a“counseling model” common to psychology. Kessler (1997)describes the goal of a teaching model within genetic counsel-ing as providing individuals with information. A teachingmodel is compatible with the profession’s traditional adher-ence to nondirectiveness (Weil et al. 2006) as it assumesindividuals are capable of making autonomous decisions oncethey receive relevant information in an unbiased fashion. AsKessler points out, however, the professional ultimately de-termines the nature of the information provided, and researchdemonstrates no one can be entirely unbiased in that regard(cf. Bartels et al. 1997). Furthermore, although much of thegenetic counselor’s role is to inform patients (e.g., aboutscreening or testing options, or a particular genetic condition),counselors cannot rely solely on a teaching model because itoversimplifies human behavior and psychosocial factors(Kessler 1997).

In contrast, Kessler (1997) describes a counseling model asemphasizing provision of education as a means of relievingpatient distress, bolstering self-confidence, understanding andsupporting the patient, promoting the patient’s sense of controland working to find solutions. In order to be maximallyhelpful to patients, genetic counselors draw from a counselingmodel in order to get to know patients, assist them in reachingdecisions which are consistent with their frame of reference,and assign personal meaning to their patients’ situations.

Although neither a teaching nor counseling model seems tofully capture genetic counseling practice, no published modelspecific to genetic counseling existed until recently. In 2007,McCarthy Veach et al. described the first model of practicespecific to genetic counseling, the Reciprocal-EngagementModel (REM). The authors convened a consensus meetingto define one or more models of practice for the geneticcounseling profession. Twenty-three program directors from20 different genetic counseling programs in North Americaarticulated five tenets, defined as “a principle, doctrine, or

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belief held in common by members of a group” (p. 714).These tenets are: relationship is integral to genetic counseling,genetic information is key, patient autonomy must be support-ed, patients are resilient, and patient emotions matter. Theparticipants also identified 17 goals (See Table 2), defined asan “aim, purpose; content specified as aim for activity” (p. 714),which reflect one or more of the five tenets. There are bothprocess goals, defined as, “conditions that must be presentduring genetic counseling sessions in order to achieve desiredgenetic counseling outcomes” (p. 719); and outcome goals,defined as, “the results of genetic counseling” (p. 719).

The REM contains components reflective of both a teach-ing model and a counseling model. Consistent with a teachingmodel, education about biomedical information comprises akey element in the exchanges between the genetic counselorand patient. Consistent with a counseling model, the REMemphasizes the influence of patient emotions, experiences,and unique characteristics on genetic counseling processesand outcomes. The model recognizes that patients have dif-ferent attributes, will make different decisions, and will copedifferently with their situations.

Purpose of the Present Study

The REM shows promise for defining and guiding geneticcounseling practice; however, further research regarding thelegitimacy of this model is necessary. Program directors de-fined the goals of the model they were teaching in theirprograms at the time of the consensus meeting. It is unknownwhether these goals are a comprehensive reflection of actualgenetic counseling practice. Moreover, due to time restric-tions, it is possible some goals may have been omitted.Therefore, research attempting to validate the REM consti-tutes an important next step. Validation of a model is anincremental process involving numerous studies with practi-tioners, educators, and patients. The present study is an initialstep towards determining the validity of one component of theREM, namely the goals of practice, from the perspective of alarger group of practitioners.

An overarching purpose of the present study was to assessthe extent to which the goals of the REM, as described andpresumably taught by genetic counseling program directors,are the same as the goals of practicing genetic counselors.Accordingly, genetic counselors were invited to participate inan anonymous online survey investigating fourmajor researchquestions: (1) How important is each of the 17 REM goals togenetic counselors’ practice? (2) How often are genetic coun-selors able to achieve each of the 17 goals in their practice? (3)What do genetic counselors regard as a particularly successfulgenetic counseling session? and (4) What do genetic coun-selors regard as a particularly unsuccessful genetic counselingsession? The first two questions are the focus of this paper.

Methods

Participants and Procedures

Upon approval by the University of Minnesota InstitutionalReview Board, an invitation to participate in an online surveywas sent to NSGC members (~N =2,124) via the listserv witha reminder one month later. Criteria for inclusion were: ge-netic counselor currently working in, or having previouslyworked in, a clinical setting providing genetic counseling topatients. The first invitation yielded 123 responses and anadditional 71 surveys were returned after the second invita-tion, for a total of 194. As it is unknown howmany individualsactually received the invitation and met participation criteria, aconservative estimated response rate is 6.6 %.

Instrumentation

An investigator-developed survey was used in this study. Thesurvey consisted of three sections. The first section containednine demographic questions. The second section contained arandomly arranged list of the 17 REM goals (shown inTable 2). Respondents were asked to rate each goal in re-sponse to these questions: How important is this goal to yourcurrent practice? (Scale: 1=Unimportant, 2=Somewhatunimportant, 3=Somewhat important, 4=Very important,and N/A), and How often are you able to achieve the goal inyour current practice? (Scale: 1=Rarely, 2=Some of the time,3=Most of the time, 4=Almost always, and N/A). For everygoal respondents had an opportunity to provide commentsafter each rating scale. They also had an option to list addi-tional genetic counseling goals not mentioned in the survey.

The third section of the survey contained two open-endedquestions inviting examples of a counseling session respon-dents regarded as particularly successful and one theyregarded as not particularly successful. Responses to thesequestions were not part of the present analysis.

A draft of the survey was piloted on two experiencedgenetic counselors, each of whom practices in a variety ofclinical settings. Based on their suggestions, a minor wordingchange was made to one question.

Data Analyses

Quantitative analyses Descriptive statistics (numbers, per-centages, means, standard deviations, medians) were calculat-ed for responses to survey items. After conducting scale anditem reliability analyses to ensure internal consistency(resulting Cronbach’s α =0.77), principal axis factor analysisusing Promax rotation was performed on importance ratingsof the 17 REM goals to determine which, if any, of the goalswere measuring the same underlying concept. Promax rota-tion allows for oblique factor solutions, meaning factors are

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not forced to have correlations of zero. As the REM goals arecertainly conceptually correlated, this approach likely betterrepresents the underlying factor structure. The importanceratings were selected as the basis for factor analysis becausewe sought empirical support for the model in terms of whatgenetic counselors think should be done in their practice, asopposed to what is currently done. Genetic counselors may belimited in practice by logistical issues, institutional policies, orother factors, so using frequency ratings may not reflect whatthey believe to be in the best interest of their patients.Clustering of goals according to importance rating also pro-vides a starting point for future research assessing prioritiza-tion of goals by genetic counselors.

Qualitative analysis Thematic analysis (Silverman 1993) wasused to inductively extract themes from responses to the open-ended items. The first author manually coded all responses fora given question, grouping into categories those which

seemed to be similar conceptually. Next she determined aname for each grouping. For responses concerning additionalgoals, classification was done according to the 17 REM goals,when possible. Throughout this process she made modifica-tions to the groupings and their names to better reflect theconcepts. Comments often were complex, sometimesresulting in multiple classifications. The initial data groupingswere then reviewed by the second author. Any disagreementswere discussed until consensus was achieved.

Results

Respondent Characteristics

The sample’s demographic information is reported in Table 1.As shown in this table, the majority were female (95.8 %),

Table 1 Respondent Demographics (n=192)

Variable n % Variable n % Variable n %

Gender Employment Setting Geographic Region of Practice

Female 182 95.8 University Medical Center 78 41.3 Region I 14 7.3

Male 8 4.2 Private Hospital/Medical Facility 45 23.8 Region II 45 23.6

Age Public Hospital/Medical Facility 29 15.3 Region III 21 11.0

20–24 5 2.7 Physician’s Private Practice 21 11.1 Region IV 55 28.9

25–29 59 32.1 Federal/State/Country Office 2 1.1 Region V 19 9.9

30–34 52 28.3 Other 14 7.4 Region VI 35 18.3

35–39 22 12 Area of Specialtya Other 2 1.0

40–44 21 11.4 Prenatal 107 56.3 Currently Seeing Patients

45–49 13 7.1 Cancer Genetics 67 35.3 Yes 182 96.3

50–54 10 5.4 Pediatrics 57 30.0 No 7 3.7

55–59 2 1.1 Adult 30 15.8 Patients Seen Per Weekb

Ethnic/Racial Group Specialty Disease 14 7.4 1 to 9 79 43.2

Caucasian/White 172 89.6 Teratogens 10 5.3 10 to 19 69 37.7

Multi-racial 8 4.2 ART 8 4.2 20 to 29 27 14.8

Asian/Pacific Islander 5 3.6 Public Health/Newborn Screening 7 3.7 30 to 39 7 3.8

Hispanic/Latino/a 2 1.0 Molecular/Cytogenetics/Biochemical 7 3.7 40 1 0.5

African Am/Black 2 1.0 Neurogenetics 6 3.2 Last Time Patients Seenc

Other 3 1.6 Cardiology 5 2.6 < 1 year 2 28.6

Educationa Other 11 5.8 1–4 years 1 14.3

MS/MA 185 97.4 Years of Experience Seeing Patients 5–9 years 2 28.6

BSN/RN 2 1.1 0 to 4 78 41.6 10–14 years 1 14.3

MPH 2 1.1 5 to 9 48 25.5 15+ years 1 14.3

PhD 2 1.1 10 to 14 33 17.6

MSW 1 0.5 15 to 19 12 6.3

Other 2 1.1 20+ 17 9

a Respondents could check all that applyb only asked of participants currently seeing patientsc only asked of participants not currently seeing patients; n’s vary slightly because not everyone answered every question

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identified themselves as Caucasian (89.6 %), and held amaster’s degree (97.4 %). Most were between 25 to 34 yearsof age (60.4 %). Themost common employment settings wereuniversity medical center (41.3 %), private hospital/medicalfacility (23.8 %), and public hospital/medical facility(15.3 %). The most prevalent practice specialties were prena-tal (56.3 %), cancer (35.3 %), and pediatrics (30 %). The vastmajority of respondents (96.3 %) were seeing patients in aclinical setting at the time of survey completion. Geneticcounseling experience varied, with most respondents havingaccrued 0–4 years (41.5 %), followed by 5–9 years (25.5 %),and 10–14 years (17.6 %).

The sample’s demographics are highly reflective of thosereported in the 2008 NSGC Professional Status Survey (PSS;Smith et al. 2009) that was available at the time of the study; inparticular, their gender, ethnic identification, age, professionaldegree, employment setting, and practice setting. The PSSreports 17.5 % of genetic counselors work in non-clinicalsettings, including 9 % who work in diagnostics laboratories;however, none of the present survey respondents reportedworking in a diagnostics laboratory. This difference was

expected, as recruitment efforts targeted genetic counselorswho see patients in a clinical setting.

Genetic Counselor Goals

Ratings of Goal Importance and Frequency

Respondents were asked to rate each of the 17 REM goals interms of its importance to their practice as well as how oftenthey are able to achieve this goal in their practice. Meanratings are shown in Table 2. Every goal was rated on averageas somewhat to very important (mean ≥ 3.00). The three goalswith the highest importance ratings are: Counselor presentsgenetic information in a way that the patient can understand,Good counselor-patient communication occurs, and Thecounselor knows what information to impart to each patient.Eight goals were rated on average as being achieved Most ofthe time to Almost always (mean ≥ 3.00). The three goals withthe highest frequency ratings are: Counselor helps the patientto feel informed, Counselor presents genetic information in a

Table 2 Means for REM Goal Importance and Frequency and Correlation between Importance and Frequency Ratings (n =182)

Goal Importance Frequency rb

n M SD Range ra n M SD Range ra

Counselor presents genetic information in a way that the patientcan understand

164 3.99 0.11 3–4 −0.23 162 3.68 0.47 3–4 0.04 −0.08

Good counselor-patient communication occurs 165 3.93 0.38 1–4 −0.07 164 3.47 0.63 1–4 0.00 0.20

The counselor knows what information to impart to each patient 164 3.90 0.31 3–4 −0.13 165 3.58 0.54 2–4 −0.06 0.26

Counselor helps the patient to feel informed 165 3.87 0.39 1–4 0.01 162 3.76 0.44 2–4 −0.06 0.37*

Counselor facilitates collaborative decisions with the patient 164 3.79 0.63 1–4 −0.01 164 3.49 0.72 1–4 −0.07 0.54*

Counselor helps patient to adapt to his or her situation 182 3.71 0.53 1–4 0.12 181 2.92 0.58 1–4 0.23 0.32*

Counselor helps the patient to feel in control 168 3.65 0.60 1–4 −0.02 168 2.91 0.68 1–4 0.01 0.44*

Counselor integrates the patient’s familial and cultural contextinto the counseling relationship and decision-making

162 3.65 0.64 1–4 0.01 163 2.88 0.74 1–4 −0.05 0.34*

Counselor works with patient to recognize concerns that aretriggering the patient’s emotions

166 3.54 0.74 1–4 −0.12 168 2.74 0.84 1–4 0.02 0.48*

Counselor’s characteristics positively influence the process ofrelationship-building and communication betweencounselor and patient

168 3.52 0.75 1–4 0.22 168 3.26 0.69 1–4 0.16 0.38*

Counselor facilitates the patient’s feelings of empowerment 164 3.44 0.68 1–4 0.01 164 2.85 0.68 1–4 −0.07 0.39*

Counselor recognizes patient strengths 167 3.40 0.69 1–4 0.03 168 2.77 0.77 1–4 0.10 0.43*

Counselor and patient reach an understanding of patient’sfamily dynamics and their effects on the patient’s situation

165 3.35 0.68 1–4 −0.16 166 2.63 0.77 1–4 −0.14 0.59*

Counselor establishes a working contract with a patient 164 3.34 0.84 1–4 −0.20 164 3.16 0.96 1–4 −0.23 0.61*

Counselor helps the patient to gain new perspectives 165 3.24 0.72 1–4 0.01 165 2.71 0.78 1–4 0.07 0.58*

Counselor and patient establish a bond 169 3.17 0.64 2–4 0.12 169 3.05 0.70 1–4 0.13 0.49*

Counselor promotes maintenance of or increase inpatient self-esteem

168 3.02 0.85 1–4 −0.04 168 2.47 0.86 1–4 0.03 0.29*

a correlation with years of experience as a genetic counselorb correlation between Importance rating and Frequency rating; *p <0.001 (Bonferroni corrected α); Both scales based on 4-point Likert items, withhigher scores indicating higher importance/frequency. n varies due to respondent missing data

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way that the patient can understand, and The counselorknows what information to impart to each patient.

Importance and frequency ratings for 14 of the 17 goalswere significantly correlated (Bonferroni adjusted α=0.001)and ranged from −0.08 to 0.61 (see Table 2). In other words,as the importance of a goal increases, the frequency withwhich it is achieved tends to increase. The three goals forwhich correlations were not statistically significant are:Counselor presents genetic information in a way that thepatient can understand (which was the only item with anegative correlation between importance and frequency);Good counselor-patient communication occurs ; and Thecounselor knows what information to impart to each patient .These three items had mean importance ratings > 3.9 andlikely were not significant because of a restricted range ofresponses (ceiling effect).

Correlations were also computed for the goal importanceand frequency ratings with years of experience as a geneticcounselor to see if perceptions tended to shift over time. Thesecorrelations ranged from −0.23 to+0.23, but none were sta-tistically significant (Bonferroni adjusted α =0.001; seeTable 2). Post-hoc sensitivity analysis showed power of 0.80for correlations of 0.31 or greater, indicating acceptable powerfor moderate correlations.

Factor Analysis of REM Goals

A principal axis factor analysis using Promax rotation wasconducted on the importance ratings for the 17 REM goals.Visual analysis of the scree plot yielded four factors whichaccounted for 51 % of the variance in importance ratings (seeTable 3 for loadings).

Factor 1: Understanding and appreciation. This factorincludes six goals which indicate the counselor and pa-tient gain an understanding of the patient’s individual,familial, and cultural characteristics. The counselor drawsupon the patient’s unique situation to set goals for thesession and works with the patient in ways to allow thepatient to feel involved and efficacious. The average itemrating for this factor was 3.49 (SD =0.60).Factor 2: Support and guidance. This factor includes sixgoals characterizing the development of a supportivealliance comprised of rapport, trust, and recognition ofpatient strengths. Within this supportive relationship, thecounselor guides patient perspective-taking, adaptation,and sense of control. The average item rating for thisfactor was 3.44 (SD =0.64).Factor 3: Facilitative decision-making. This factor in-cludes three goals pertaining to counselor actions whichpromote informed, collaborative decision-making by pa-tients. The average item rating for this factor was 3.87(SD =0.39).

Factor 4: Patient-centered education. This factor con-tains two goals which involve effectively communicatinginformation tailored to the patient’s needs and character-istics. These goals comprise teaching objectives of genet-ic counseling. The average item rating for this factor was3.97 (SD =0.17).

Open-Ended Responses about REM Goals

Respondents had the option to comment on their importanceand frequency ratings for each REM goal. Thirty genetic

Table 3 Summary of Principal Axis Factor Analysis with PromaxRotation

Goal Factor

1 2 3 4

Counselor and patient reach anunderstanding of patient’s familydynamics and their effects on thepatient’s situation

0.595

Counselor promotes maintenance of orincrease in patient self-esteem

0.503

Counselor facilitates the patient’s feelingsof empowerment

0.502

Counselor integrates the patient’s familialand cultural context into the counselingrelationship and decision-making

0.490

Counselor works with patient to recognizeconcerns that are triggering the patient’semotions

0.472

Counselor establishes a working contractwith a patient

0.233

Counselor recognizes patient strengths 0.636

Counselor and patient establish a bond 0.591

Counselor’s characteristics positivelyinfluence the process of relationship-building and communication betweencounselor and patient

0.525

Counselor helps the patient to gain newperspectives

0.458

Counselor helps patient to adapt to his orher situation

0.451

Counselor helps the patient to feel incontrol

0.416

Counselor helps the patient to feelinformed

0.662

The counselor knows what information toimpart to each patient

0.442

Counselor facilitates collaborativedecisions with the patient

0.400

Counselor presents genetic information ina way that the patient can understand

0.738

Good counselor-patient communicationoccurs

0.409

Factor names: 1 – Understanding and Appreciation ; 2 – Support andGuidance ; 3 – Facilitative Decision-Making ; 4 – Patient-CenteredEducation .

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counselors (15 %) provided a total of 95 comments whichwere classified into one or more of 8 categories. The majorityof comments referenced the frequency of goal attainment,followed by goal importance. Every REM goal wascommented on by a few respondents (See Table 4). Thefollowing section contains a brief description of the categoriesin descending order of prevalence (n ’s refer to number ofcomments). Table 4 specifies which goals are referencedwithin each category, and Table 5 contains illustrative verba-tim examples for each category.

Category 1: Goal is Patient/Situation Dependent (n=19)- goal attainment and goal importance depend on patientcharacteristics, genetic counseling specialty, patient-specific needs, and reason for the genetics referral.Category 2: Long-Term Goal (n=17) - although geneticcounselors play a role in its achievement, the goal in-volves a complex, time-consuming process that continuesbeyond the genetic counseling session.Category 3: Goal is Difficult to Achieve (n=15) –achieving certain goals can be challenging for variousreasons including time restrictions, the reality of one’ssituation (e.g., patients having little control over theirgenetic condition), the complexity of factors involved inthe situation, and counselor uncertainty of whether theyhave achieved the goal.Category 4: Inappropriate Goal (n=14) - reflects partic-ipant perceptions that the goal is beyond the scope ofgenetic counseling and/or is not a relevant goal for ge-netic counseling.Category 5: Goal Lacks Clarity (n=12) - the wording ofthe goal is unclear.Category 6: Goal is Essential (n=5) - certain goals arecrucial and/or the primary objective of genetic counseling.Category 7: Not a Goal (n=4) – reflects participantperceptions that the goal is not actually a goal; rather itis a skill/ability, a by-product of the session, or a strategyto attain some other goal.Category 8: Miscellaneous (n=9) – comment could nototherwise be classified because it was mentioned by onlyone individual.

Open-Ended Responses about Additional GeneticCounseling Goals

After rating the 17REMgoals, respondents were invited to listadditional goals that are important to them as a genetic coun-selor. Twenty-five individuals (13 %) provided a total of 41comments. A majority of their comments (n= 30) involvedelaborations of one or more of the REM goals. Examplesinclude: “1. Gaining the trust of the patient, and in turn beingable to trust her [and] 2. Establishing appropriate boundaries”

(Goal: Counselor and patient establish a bond); “…Patientslearn and understand on [sic] improvements in therapy anddecreased risks of treatment in congenital, chronic conditioncompared to previous generations or prior family experience”(Goal: Counselor helps the patient to feel informed );“Lessening harm or stress or increasing the capacity to handleit” (Goal: Counselor helps patient to adapt to his or hersituation ); “Achieve an understanding of why they are there,what was accomplished by the end of the session and where togo from here” (Goal: Counselor facilitates the patient’s feel-ings of empowerment ); “Counselor facilitates decision mak-ing, patient is comfortable with decision/plan” (Goal:Counselor facilitates collaborative decisions with the pa-tient ); and “Communicates in a manner appropriate to theindividual’s age, culture and educational level” (Goal:Counselor presents genetic information in a way that thepatient can understand).

Some respondents described ways in which a REM goal isspecific to their practice area, for instance, “Diagnosticdysmorphology role. Identify unmet medical and educationalneeds. Identify resources. I would use ‘family’ not patient forthese questions in the pediatric setting.” (Goal: Counselorpresents genetic information in a way that the patient canunderstand); and “Patients understand their choices are theirsto make – testing/not testing; pregnancy/adoption/abortion/nopregnancy; reproductive technology…” (Goal: Counselor fa-cilitates the patient’s feelings of empowerment ).

One respondent mentioned some of the goals are moreimportant during some sessions than others: “…just a com-ment that I may focus on one or a few of these goals more thanothers in any given counseling session.”

Out-of-Session Goals and Strategies

A few comments (n =11) specified professional goals or activ-ities which are not directly part of a genetic counseling session(the focus of the REM is the session). There are four categories.

Category 1: Patient follow-up –refers to maintaining arelationship with patients beyond the counseling session,specifically, making oneself available for further contact:“…the patient is able to easily reach me for follow-upshould there be a need and that barriers not be in place forreferrals in the 1st place (i.e., 1st, 2nd, and 3rd visit typesof BRCA counseling/testing).”Category 2: Keeping up-to-date – involves the geneticcounselor staying current regarding genetic informationand/or testing availability: “Remain current and up-to-date on relevant information including testing, resources,insurance coverage, etc.”Category 3: Professional growth – involves the counsel-or translating learning from one genetic counseling ses-sion to other sessions: “The counselor learns from

Genetic Counselor Perceptions of Genetic Counseling Session Goals

Page 8: Genetic Counselor Perceptions of Genetic Counseling Session Goals: A Validation Study of the Reciprocal-Engagement Model

Tab

le4

Categorizationof

Com

mentsaboutR

EM

Goalsfrom

aSu

bsetof

GeneticCounselor

Respondents(n=30)

Factor

REM

Goal

Category

Goalispatient/

situation

dependent

Long

term

goal

Goalis

difficultto

achieve

Inappropriate

goal

Goal

lacks

clarity

Goalis

essential

Not

agoal

Miscellaneous

Understanding

&Appreciation

Counselor

andpatient

reachan

understandingof

patient’s

family

dynamicsandtheireffectson

thepatient’ssituation

XX

Counselor

prom

otes

maintenance

ofor

increase

inpatient

self-esteem

XX

XX

Counselor

facilitates

thepatient’sfeelings

ofem

powerment

X

Counselor

integrates

thepatient’sfamilialandcultu

ralcontext

into

thecounselin

grelatio

nshipanddecision-m

aking

XX

Counselor

works

with

patient

torecognizeconcerns

thatare

triggering

thepatient’sem

otions

XX

Counselor

establishesaworking

contractwith

apatient

X

Support&

Guidance

Counselor

recognizes

patient

strengths

XX

Counselor

andpatient

establishabond

XX

XX

X

Counselor’scharacteristicspositiv

elyinfluencetheprocessof

relatio

nship-build

ingandcommunicationbetween

counselorandpatient

XX

Counselor

helpsthepatient

togain

newperspectives

X

Counselor

helpspatient

toadapttohisor

hersituation

XX

X

Counselor

helpsthepatient

tofeelin

control

XX

XX

Facilitativ

eDecision-

Making

Counselor

helpsthepatient

tofeelinform

edX

XX

The

counselorknow

swhatinformationto

impartto

each

patient

XX

Counselor

facilitates

collaborativ

edecisionswith

thepatient

XX

Patient-Centered

Educatio

nCounselor

presentsgenetic

inform

ationin

away

thatthe

patient

canunderstand

X

Goodcounselor-patient

communicationoccurs

XX

TotalG

oalsReferenced

104

66

33

25

Hartmann et al.

Page 9: Genetic Counselor Perceptions of Genetic Counseling Session Goals: A Validation Study of the Reciprocal-Engagement Model

patients and families, and applies feedback and newinformation to other appropriate situations.”Category 4:Miscellaneous - Two respondents commentedthat the goals of all genetic counselors are not addressed inthis study. One said:

“Do you mean goals to me as a genetic counselor orgoals in the genetic counseling encounter? These aretwo totally different things. Your survey only ad-dress[es] goals associated with the genetic counselingencounter, not goals that apply to any other situation agenetic counselor may find herself/himself in. I amassuming you mean the latter so won’t invest my timeto list the multitude of other goals that are importantoutside the clinical encounter.”

Discussion

The present study was designed to ascertain whether thegenetic counseling practice goals articulated in theReciprocal-Engagement Model could be generalized as a

Table 5 Examples of Genetic Counselor Comments about REM Goals

Category & Illustrative Comments

Category 1: Goal is patient/situation dependent (n =19)

“When it is necessary.” (Goal: Counselor promotes maintenance of orincrease in patient self-esteem)

“My setting is very specific to the woman or couple and onlyoccasionally does the family dynamic enter into the equation.”(Goal: Counselor and patient reach an understanding of patient’sfamily dynamics and their effects on the patient’s situation)

“in risk communication, perspective is quite personal…” (Goal:Counselor helps patient to gain new perspectives)

“The session needs to feel safe. If it is, communication often takes place…Not every patient is willing to communicate. That is ok though, adaptto the situation.” (Goal: Good co-patient communication occurs)

Category 2: Long term goal (n =17)

“Adapting to the current situation is a complex process. The geneticcounselor only plays a small part. But I do think it is important tohelp patients figure out how they can do this when they go home.Who they can rely on, talk to, etc.” (Goal: Counselor helps patientto adapt to his or her situation)

“In almost all settings, there isn’t enough time to build a bond…a bondis something that takes place over a number of years and after hoursof togetherness…” (Goal: Counselor and patient establish a bond)

“Again, this is long term…not sure I have data to say that I’ve done thisfrom the session.” (Goal: Counselor promotes maintenance of orincrease in patient self-esteem)

Category 3: Goal is Difficult to Achieve (n =15)

“You can’t be perfect, but you try to help the patient have all theinformation possible to make the best decision for them.” (Goal:Counselor facilitates collaborative decisions with the patient)

“It is sometimes hard to know if they truly understand.” (Goal: TheCounselor knows what information to impart to each patient)“Cultural beliefs are more difficult to incorporate than familial values for

me.” (Goal: Counselor integrates the patient’s familial and culturalcontext into the counseling relationship and decision-making)

“While in theory, I DO think this is a very important goal, whenconsidering all of the other goals just reviewed, admittedly, this onesometimes takes the back-burner.” (Goal: Counselor establishes aworking contract with a patient)

Category 4: Inappropriate goal (n=14)

“A bond it not a genetic counseling word, it is meant for psychosocialcounseling which we are not. If this is what is being taught, thenthose institutions need to get into the real world and see what wetruly do.” (Goal: Counselor and patient establish a bond)

“It is not a goal. Our job is information and support, not to go beyondthe scope of genetic counseling practice.” (Goal:Counselor helps thepatient to feel in control)

“This is not part of being a good genetic counselor” (Goal: Counselorworks with patient to recognize concerns that are triggering thepatient’s emotions)

“If the information you provide helps a patient feel empowered, that isgreat. But that is not the goal. Some patients with a negative resultwill not feel empowered and our job is not to help them feel that way.Our job is to provide information and hopefully that will help in theprocess that may lead to empowerment.” (Goal:Counselor facilitatesthe patient’s feelings of empowerment)

Category 5: Goal lacks clarity (n =12)

“Adaptation is defined in many ways in the literature-in order tointerpret your results you need to define the term as you are usingit.” (Goal: Counselor helps patient to adapt to his or her situation)

“I’m not sure I understand what is meant by ‘characteristics’?” (Goal:Counselor’s characteristics positively influence the process of

Table 5 (continued)

Category & Illustrative Comments

relationship-building and communication between counselor andpatient)

Category 6: Goal is Essential (n =5)

“It may be for [only] a brief time, but a bond of trust and showing ourwillingness to help is important.” (Goal: Counselor and patientestablish a bond)

“…The goal of genetic counseling is to help the patient feel informed.That should be the goal…” (Goal: Counselor helps the patient to feelinformed)“I hope I’m presenting info in a way the family can understand –

otherwise, I’m not doing my job.” (Goal: Counselor presentsgenetic information in a way that the patient can understand)

Category 7: Not a goal (n =4)

“if you are a genetic counselor, you need to be able to read people. Iwould not say it is a goal, but you need to be able to understandwherea person is coming from and apply it to their situation.” (Goal:Counselor recognizes patient strengths)

“Not a goal, but you need to try to be in a patient’s shoes for a minute.That is the onlyway to provide information in an appropriatemanner.”(Goal: Counselor integrates the patient’s familial and cultural contextinto the counseling relationship and decision-making)

Category 8: Miscellaneous (n=9)

“I’m considering rapport a type of bond” (Goal:Counselor and patientestablish a bond)

“This is a weird question” (Goal: Counselor helps the patient to feel incontrol)

“This is probably something I need to focus on more” (Goal:Counselor recognizes patient strengths)

Thirty respondents provided a total of 95 comments regarding the REMgoals; in this table n refers to number of comments

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model of practice, as determined by a larger group of clinicalgenetic counselors (REM; McCarthy Veach et al. 2007). One-hundred ninety-four genetic counselors rated the importanceof the 17 REM goals to their clinical practice and indicatedhow often they believe they are able to achieve these goalswith patients.

Evidence of the Validity of the 17 REM Goals

Importance and frequency ratings Every REM goal was ratedby the majority of respondents as “somewhat important” or“very important,” suggesting these goals are valid for geneticcounselor practitioners. Importance ratings were significantlyand positively correlated with frequency ratings for 14 of thegoals. In other words, as participants rated a goal as moreimportant, they tended to report achieving that goal morefrequently. Nevertheless, mean frequency ratings were lowerthan mean importance ratings for every goal, suggesting theymight be difficult to achieve, and/or are not necessarily appli-cable to every patient. Some authors (e.g., Wang et al. 2004)assert that genetic counseling goals will vary due to geneticcondition and patient individual differences. Lower meanratings may also be due to other factors such as harshness inevaluating one’s own work, variability in how one determinesgoal achievement, etc. Further research could help to deter-mine the reasons for these ratings.

There were no significant correlations between importanceand frequency ratings for the three goals rated highest inimportance by the sample [Counselor presents informationin a way that the patient can understand andGood counselor-patient communication occurs (both in the Patient-CenteredEducation factor), and The counselor know what informationto impart to each patient (in the Facilitative Decision-Makingfactor)]. Despite respondents’ perceptions of these goals ashighly important, variability in their certainty about patients’comprehension and reactions might contribute to the lack ofsignificant relationships. Indeed, some comments about thesegoals suggest it is not always possible to assess their achieve-ment (e.g., “Sometimes what I THINK makes sense to thepatient does not ACTUALLY make sense”)

Also noteworthy, none of the correlations between years ofgenetic counseling experience and counselor ratings of goalimportance and frequency were statistically significant. Thus,novice counselors’ perceptions were similar to those of moreexperienced counselors. As these results are based on self-report, additional research is needed to determine the frequen-cy with which genetic counselors at varying experience levelsachieve the goals in actual practice.

Genetic counselor comments A small percentage of respon-dents provided comments about the REM goals. One prevalenttheme pertains to factors influencing goal importance andachievement. In particular, the relevance and feasibility of

certain goals may vary across genetic counseling specialtiesand patients. The REM emphasizes the need to provide servicestailored to each specific patient and situation, implying the goalsare of differential importance and viability for a given patient.

Another prevalent theme reflects some respondents’ viewsabout the long-term nature of certain goals. For instance, time-constraints may allow genetic counselors to only touch uponmore psychosocially-focused goals. Some respondents assertedpsychosocially-focused goals of genetic counseling can only beachieved on a superficial level, if at all. These comments illus-trate the need for greater clarification of reasonable geneticcounseling outcomes. They also suggest genetic counselorsmay initiate a process that continues beyond the genetic counsel-ing session (e.g., Counselor promotes maintenance of or in-crease in patient self-esteem).

Some respondents indicated it is beyond the scope ofgenetic counselor training and practice to delve too far intomore psychosocially-focused goals. While many of the psy-chosocial goals are similar to mental health professionals’goals (e.g., Counselor works with patient to recognize con-cerns that are triggering the patient's emotions), they servedifferent purposes. Genetic counselors should attempt to un-derstand patient experiences in order to provide the mostappropriate information to facilitate the patient’s decision-making process.

Comparatively few individuals stated any of the REMgoals are not truly “goals” or they are not appropriate. Somewho indicated a particular concept is not a “goal,” alsoexpressed a belief that helping a patient in this manner doespromote the genetic counseling process. In a couple of cases,respondents expressed completely opposite opinions. For ex-ample, one individual statedCounselor and patient establish abond is an essential genetic counseling goal, while anothercounselor said it is an inappropriate goal. Although few innumber and varying in the opinions expressed, the commentswarrant consideration as the profession identifies and investi-gates genetic counseling processes and outcomes of desiredand actual service provision.

Further evidence for the validity of the 17 REM goalsderives from open-ended responses about additional goals.Although some of the respondents suggested additional goals,their suggestions either fit within existing REM goals or theywere not specific to the genetic counseling session, which isthe focus of the REM. Therefore, no new goals were identifiedthat could be added to the REM. These results demonstrate thegoals comprehensively capture genetic counselors’ sessionobjectives, and they support the relevance of the REM forgenetic counseling practice.

Of note, only a small percentage of respondents providedcomments in this study. In-depth interviews would provide aricher picture of practitioner perceptions of goal importanceand feasibility and yield more specific descriptions of how thegoals are actually accomplished in genetic counseling sessions.

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Factor Structure of the REM Goals

McCarthy Veach et al. (2007) theorized the REM goals arelinked to five tenets (fundamental principles). Factor analysisof goal importance ratings in the present study yielded anunderlying 4-factor conceptual structure (See Table 3).These four factors reflect the 5 REM tenets, suggesting con-tent validity of the model. That the analysis returned fourrather than five factors suggests practitioners may view theessential components of genetic counseling practice slightlydifferently than program directors, even while the same fun-damental tenets are present. One study is insufficient tocompletely validate or undermine the structure of the model,yet the results of this study indicate further investigation ofthis issue is needed and some reorganization of the model maybe necessary.

The first factor,Understanding and Appreciation , containssix goals emphasizing counselor and patient awareness of howthe patient’s situation and characteristics may influence theirdecision-making or feelings about a diagnosis or risk (e.g.,“Counselor facilitates the patient’s feelings of empowerment,”and “Counselor works with patient to recognize concerns thatare triggering the patient’s emotions”). Many of the goals inthis factor correspond to the REM tenets:Patients are resilientand Patient emotions make a difference . This factor signifiesall patients are unique and their characteristics and situationmust be recognized by the counselor (as well as the patient) inorder to achieve three genetic outcomes articulated in theREM: “Patient understands and applies information to: makedecisions, manage condition, and adapt to situation”(McCarthy Veach et al. 2007, p. 724).

The second factor, Support and Guidance , consists of sixgoals emphasizing development of a supportive alliance (e.g.,“Counselor and patient establish a bond” and “Counselorhelps the patient to feel in control”) in which the counselorprovides assistance to the patient to work toward achievingdesired outcomes (e.g., “Counselor helps patient to adapt tohis or her situation”). These goals imply the counselor workswith the patient in ways that allow the patient to feel involved,autonomous, and efficacious. These goals correspond to theREM tenets, Patient autonomy must be supported, Patientsare resilient, and the Relationship is integral to geneticcounseling .

The third factor, Facilitative Decision-Making , containsthree goals which had some of the highest importance ratings.These goals focus on informed, collaborative decisions(“Counselor facilitates collaborative decisions with the pa-tient,” “The counselor knows what information to impart toeach patient,” and “Counselor helps the patient to feel in-formed”). The role of the genetic counselor is not to make adecision for or be directive with patients, but rather to providethemwith information to help themmake the best decision fortheir situation and frame of reference. These three goals

correspond to the REM tenets Patient autonomy must besupported , and Information is key.

The fourth factor, Patient-centered education , contains twogoals, both of which had the highest importance ratings(“Counselor presents genetic information in a way that thepatient can understand,” and “Good counselor-patient com-munication occurs). These goals correspond to the REMtenets Genetic information is key and the Relationship isintegral to genetic counseling . Given some respondents’ com-ments that education-based goals are more important thanpsychosocially-based goals, it is not surprising Patient-cen-tered education goals had the highest mean importanceratings.

Resta et al.’s (2006) definition of genetic counseling focus-es on patient education as a means to “promote informedchoices”; however, their definition also clearly states“[g]enetic counseling is a process of helping people under-stand and adapt to the medical, psychological and familialimplications of genetic contributions to disease” (p.77). Somerespondents mentioned helping patients to adapt is not possi-ble given how genetic counseling is currently practiced (e.g.,the time-limited nature of sessions and relationships). Perhapsthe goal Counselor helps patient to adapt to his or her situa-tion would be better met if genetic counselors had more long-term contact with patients. This may also be one reasongenetic counselors rated other psychosocially-focused goals(e.g., Counselor helps the patient to feel in control orCounselor recognizes patient strengths ) as less importantand less frequently achieved than education-focused goals.

While the definition of genetic counseling implies theprocess involves both educational and psychosocial compo-nents, the results of this study indicate information goals maysupersede psychosocial goals, especially when genetic coun-selors perceive they only have sufficient time to educate theirpatients. Yet, arguably, education might be difficult (if notimpossible) to achieve in every genetic counseling sessionwithout having first established a personal connection withthe patient.

Study Limitations

While the results of this study suggest endorsement of theREM goals, the sample represents a small percentage ofpracticing genetic counselors. Though the demographics ofthose participating in this study are reflective of those in theProfessional Status Survey (PSS; Smith et al. 2009), this doesnot imply their views may be generalized to the population ofgenetic counselors as a whole. Ratings of each goal andcomments suggest most, but not all participating counselorsfeel positively about the psychosocial aspects of geneticcounseling. One participant made negative comments regard-ing some of the psychosocially-oriented goals and did not ratethe importance of those goals. Perhaps other genetic

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counselors with similar negative views chose not to participatein the study after reading the initial invitation. A study whichreached a broader range of genetic counselors would alsoallow for more powerful analyses to investigate more nuancedrelationships between importance and frequency ratings anddemographic variables, such as experience, and it might yieldincreased variability in the three correlations potentiallyinfluenced by a ceiling effect.

Respondents were not asked to rate the REM goals specificto a given practice specialty. Indeed, many indicated theypractice in more than one specialty area. Their ratings of theREM goals likely are based on multiple types of patients, thusproviding some support for the universality of the goals.Nonetheless, correlations between specialty and goalimportance/frequency could not be performed, given thatmany respondents reported multiple specialties. Additionalresearch should be done to determine the applicability of thegoals across practice specialties.

Another limitation is that respondents were not asked toreport the amount of time they are allotted to spend with eachpatient. As many respondents cited time as an influentialfactor, it is important to determine the relationship betweenlength of patient appointments and REM goal importance andachievement. Respondents also were not asked to rank the 17goals in order of their importance; therefore, the data arelimited with respect to whether genetic counselors regardcertain goals as essential and others as peripheral.

Had the factor analysis been based on frequency ratingsinstead of importance, the factor solution would likely havelooked different. As discussed earlier, the rationale for usingimportance was to try to distinguish between what participantsthink should be done and what they actually do. Nevertheless,what genetic counselors do in their sessions is likelyinfluenced by what they think is important, as evidenced bythe moderate correlations between frequency and importancein this dataset. Some sort of composite variable could havebeen created to incorporate frequency and importance, butdetermining an appropriate weighting formula to create ameaningful composite is not a straightforward process anduse of an arbitrary composite would have muddied the watersfurther.

Some respondents commented that the wording of partic-ular goals was unclear or could be interpreted in multipleways. For instance, a number of counselors took exceptionto the term “bond” in the goalCounselor and patient establisha bond . This term seemed to be unfamiliar for some, and forothers it was too “intense” to describe the nature of the geneticcounselor-patient relationship. Given the rather broad natureof all of the REM goals, it is likely the ratings were influencedby differences in subjective interpretation.

Finally, an obvious limitation is the self-report nature of thesurvey. The extent to which the sample’s responses reflect thegoals they attempt in actual genetic counseling sessions could

not be determined. Participants’ assessments of the frequencywith which they achieve the goals may also have beeninfluenced by their perceived importance of the goal (i.e.,social desirability bias). Studies analyzing actual practitionerbehaviors (cf. Butow and Lobb 2004) would yield informationabout variability among practitioners and the prevalence ofdifferent goals.

Practice and Training Implications

The findings of this study support the potential utility of theREM goals as a conceptual framework for student and geneticcounselor practice. For instance, they may be useful contentfor genetic counseling curricula, clinical rotation evaluationforms, and client satisfaction forms. The results also might beused to stimulate ongoing conversations about the nature ofgenetic counseling practice. For instance, although a majorityof respondents rated the REM goals as important and fre-quently achieved, a few individuals expressed an opinion thatpatient education is the most important, and perhaps shouldeven be the only goal of genetic counseling practice. Someregarded psychosocially-focused goals as “psychotherapy”and therefore not appropriate for genetic counseling practice.Their responses suggest a “disconnect” between teaching andcounseling aspects of genetic counseling persists.

Genetic information is a key distinguishing tenet of theREM. Moreover, genetic information is more easily defined,organized, and taught in graduate curricula, and it is moreeasily operationalized by clinical supervisors and supervisees.Psychosocial skills associated with other REM goals may bemore challenging to teach and develop as they are moreabstract and require ongoing supervision/consultation andself-reflection (Borders et al. 2006). When considering thesefactors, it is not surprising that psychosocial goals may besuperseded at best, and dismissed as irrelevant at worst, bysome practitioners. We recommend training programs and theprofession actively address this disconnect by continuing toidentify ways in which to bridge education and counseling.

Finally, the results of this study have implications forfurther development and refinement of the REM. In particular,the endorsement of REM goals supports their value for guid-ing the identification of corresponding genetic counselor strat-egies and behaviors.

Future Research Recommendations

Given their endorsement by the present sample, the REMgoals show promise as conceptual organizers for studies ofgenetic counseling processes and outcomes. Their utility inthat regard will be strengthened by additional research. Forinstance, prior authors have asserted certain goals may bemore relevant in some genetic counseling specialties than inothers (cf. Biesecker 2001). Therefore, researchers should

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examine the validity of the REM goals for different practicespecialties. Investigations involving larger samples of practi-tioners would yield further data about the validity of the REMgoals in clinical practice. Genetic counseling service providersfrom different countries should be studied in order to establishthe cross-cultural validity of the REM tenets and goals. Asmentioned previously, a small percentage of respondentscommented on the reasons for their ratings of each REM goal.Those individuals provided interesting insights into why goalsmay or may not be achieved in a clinical setting. Interviewstudies would allow for a deeper exploration of the reasonssome goals are easier to attain than others, and shed light onwhether and why genetic counselors view some goals as moreimportant than others. Interviews would additionally help toascertain variability in counselors’ opinion about education-versus counseling-focused goals. Research should also bedone to investigate patient perspectives of REM goal impor-tance and the extent to which the genetic counselor achievesthese goals.

Initial development of the REM included efforts to identifyspecific strategies and behaviors associated with each goal,but lack of time precluded completion of that task. Futureinvestigations should attempt to delineate the strategies andbehaviors that lead to the accomplishment of each goal.Studies of educators, practicing genetic counselors, and ge-netic counseling patients would aid in development of theseaspects of the model. Finally, studies of actual geneticcounseling sessions would provide further empirical evidenceregarding the extent to which the REM reflects geneticcounseling practice.

Conclusion

The purpose of this study was to assess the extent to which thegoals of the Reciprocal Engagement Model, as described, andpresumably taught, by genetic counseling program directors,are the same as the goals of practicing genetic counselors.Based on the findings of this study, genetic counselors inNorth America generally appear to support the importanceof the REM goals and believe they are able to achieve thesegoals with some frequency. The REM goals show promise asa comprehensive set of objectives to inform clinical trainingand practice and research on genetic counseling processes andoutcomes. The goals investigated in the present research arerestricted to those concerning counselor-patient interactionswithin genetic counseling sessions. They do not include pro-fessional goals for activities which take place outside of thesession, nor do they include goals for genetic counselors whowork in areas other than direct patient care. While some goalsmay not be applicable for certain patients and others may bedifficult to achieve due to patient characteristics or other

factors, it seems reasonable to expect genetic counselors willhave worked toward all of these goals at some point in theirpractice. Further researchwill help to establish the validity andutility of the goals across genetic counseling specialties andpatient and provider populations and aid in further develop-ment of associated strategies and behaviors consistent withREM tenets and goals.

Acknowledgements This study was done in partial fulfillment of therequirements for the first author’s Master of Science degree from theUniversity of Minnesota. We would like to express our sincere appreci-ation to the genetic counselors who completed the online survey. Dr.Christina Palmer served as Action Editor on the manuscript reviewprocess and publication decision.

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Genetic Counselor Perceptions of Genetic Counseling Session Goals