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NIH Public Access Author Manuscript Palliat Support Care. Author manuscript; available in PMC 2010 January 31. Published in final edited form as: Palliat Support Care. 2009 September ; 7(3): 315. doi:10.1017/S1478951509990241. NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author Manuscript Development and validation of the Family Decision-Making SelfEfficacy Scale MARIE T. NOLAN, PH.D., R.N.1,2, MARK T. HUGHES, M.D., M.A.2,3, JOAN KUB, PH.D., R.N. 1, PETER B. TERRY, M.D., M.A.2,3, A
  Development and validation of the Family Decision-Making Self-Efficacy Scale MARIE T. NOLAN, PH.D., R.N. 1,2, MARK T. HUGHES, M.D., M.A. 2,3, JOAN KUB, PH.D., R.N. 1, PETER B. TERRY, M.D., M.A. 2,3, ALAN ASTROW, M.D. 4, RICHARD E. THOMPSON, PH.D. 5, LORA CLAWSON, M.S.N., R.N., N.P. 3, KENNETH TEXEIRA, PH.D. 6, and DANIEL P.SULMASY, M.D., PH.D. 6,7 1 School of Nursing, Johns Hopkins University, Baltimore, Maryland 2 Berman Institute of Bioethics,Johns Hopkins University, Baltimore, Maryland 3 School of Medicine, Johns Hopkins University,Baltimore, Maryland 4 Division of Medical Oncology and Hematology, Maimonides Medical Center,Brooklyn, New York 5 Bloomberg School of Public Health, Johns Hopkins University, Baltimore,Maryland 6 St. Vincent Catholic Medical Centers, New York, New York 7 New York Medical College,New York, New York Abstract Objective— Several studies have reported high levels of distress in family members who have madehealth care decisions for loved ones at the end of life. A method is needed to assess the readiness of family members to take on this important role. Therefore, the purpose of this study was to developand validate a scale to measure family member confidence in making decisions with (consciouspatient scenario) and for (unconscious patient scenario) a terminally ill loved one. Methods— On the basis of a survey of family members of patients with amyotrophic lateral sclerosis(ALS) enriched by in-depth interviews guided by Self-Efficacy Theory, we developed six themeswithin family decision making self-efficacy. We then created items reflecting these themes that wererefined by a panel of end-of-life research experts. With 30 family members of patients in an outpatientALS and a pancreatic cancer clinic, we tested the tool for internal consistency using Cronbach’salpha and for consistency from one administration to another using the test–retest reliabilityassessment in a subset of 10 family members. Items with item to total scale score correlations of lessthan .40 were eliminated. Results— A 26-item scale with two 13-item scenarios resulted, measuring family self-efficacy indecision making for a conscious or unconscious patient with a Cronbach’s alphas of .91 and .95,respectively. Test–retest reliability was r  = .96,  p = .002 in the conscious senario and r  = .92,  p = .009 in the unconscious scenario. Significance of results— The Family Decision-Making Self-Efficacy Scale is valid, reliable, andeasily completed in the clinic setting. It may be used in research and clinical care to assess theconfidence of family members in their ability to make decisions with or for a terminally ill lovedone. Keywords Decision making; Self-efficacy; End of life; Family; Scale Address correspondence and reprint requests to: Marie T. Nolan, School of Nursing, Johns Hopkins University, 525 North Wolfe Street,Baltimore, MD 21205. NIH Public Access Author Manuscript Palliat Support Care . Author manuscript; available in PMC 2010 January 31. Published in final edited form as: Palliat Support Care . 2009 September ; 7(3): 315. doi:10.1017/S1478951509990241. N I  H -P A A  u t  h  or M an u s  c r i   p t  N I  H -P A A  u t  h  or M an u s  c r i   p t  N I  H -P A A  u t  h  or M an u s  c r i   p t    INTRODUCTION The purpose of this article is to describe the development of a scale that will allow us tounderstand the level of confidence that family members have for participating in health caredecisions for terminally ill loved ones. We first identified a need for such a scale when ourstudy of terminally ill patient decision making revealed that a high percentage of patientspreferred shared decision making with family. The challenge, however, is that family and othersurrogate decision makers are often unprepared for end-of-life decision making and manyreport high levels of distress from this role (Teno et al., 1997; Tilden et al., 2001; Sulmasy etal., 2006). There is a dearth of measures to assess advance care planning (Mularski et al.,2007), and, although there are instruments to measure how confident family members are intheir caregiving roles (Steffen et al., 2002), we found no instruments that measured familymembers’ confidence in their ability to take part in health care decision making with or for aterminally ill loved one. In this article we describe the development and validation of the FamilyDecision-Making Self-Efficacy Scale. The scale has two scenarios that reflect how familyparticipation actually occurs. The first covers decisions when the patient retains the capacityto participate, and the second covers decisions made on the supposition that the patient lacksdecisional capacity. For simplicity, we refer to these as the conscious and unconsciousscenarios within the scale. Background Our study of the natural history of end-of-life decision making in 130 patients with end-stagecancer, heart failure, or amyotrophic lateral sclerosis (ALS) examined how patients preferredto involve their family and physician in health care decision making. When considering familyinvolvement, 44% preferred to share decision making equally with a family member. Whenconsidering both family and physician involvement given a hypothetical situation in whichthey would not have decisional capacity, 33% of patients preferred that their family’s input begiven greater weight than their physician’s input (Nolan et al., 2005). When we followedpatients for 6 months, these preferences did not change significantly (Sulmasy et al., 2007).This stability of patients’ preferences for family involvement is good news for the timing of advance care planning. Health professionals can begin these discussions soon after the patienthas been identified as having a terminal illness. Having a method to measure the familymembers’ confidence in their ability to participate in decision making at the level desired bythe patient could greatly enhance advance care planning. Defining the Construct of Family Decision-Making Self-Efficacy As part of the natural history of end-of-life decision making study described above, weinterviewed a subgroup of 16 family members after the death of their loved one. We found thatonly 50% of patients who preferred shared family decision making actually experienced thisat the end of life (Nolan et al., 2008). Using in-depth qualitative interviews with the familymembers, we used a directed content analysis approach in which open-ended questionsregarding the phenomena of interest are used to start the interview followed by more structuredquestions using existing theory (Hsieh & Shannon, 2005). In this case, we started with broadquestions about the types of health care decisions made near the death of the patient and howthey were made. Following this, we asked more structured questions based on Bandura’s(1997) Self-Efficacy Theory. This theory states that self-efficacy or confidence that one canperform a behavior is influenced by three main factors: previous performance of the desiredbehavior, vicarious experience of observing others perform the behavior, and positive feedback that one can successfully perform the behavior. In the structured phase of the interview, weasked family members whether they had any previous experience in health care decisionmaking with or for a loved one near the time of death, whether they had observed anotherperson make these types of decisions, or whether they had received positive feedback from NOLAN et al.Page 2 Palliat Support Care . Author manuscript; available in PMC 2010 January 31. N I  H -P A A  u t  h  or M an u s  c r i   p t  N I  H -P A A  u t  h  or M an u s  c r i   p t  N I  H -P A A  u t  h  or M an u s  c r i   p t    anyone regarding their ability to participate in these types of decisions. We also asked whetherthere were other things that made their participation in these decisions easier or more difficult.We analyzed family member responses and identified six main themes: being a surrogate,choosing treatments, accepting palliative care, meeting spiritual needs, maintaining familyharmony, and communicating with health professionals (Nolan et al., 2008). METHODS Content Validity From the six themes of family decision making self-efficacy, we developed 23 items with a 5-point Likert Scale ranging from 1 (“completely disagree”) to 5 (“completely agree”) for thefirst version of the Family Decision-Making Self-Efficacy Scale. We then provided a copy of these items to a multidisciplinary panel of end-of-life decision-making researchers includinga doctorally prepared nurse, a psychiatrist, and an internal medicine specialist. We asked panelmembers whether or not each item reflected the theme of decision-making self-efficacy it wasmeant to represent. We also asked them to recommend wording for any item that wouldimprove clarity, brevity, grammar, or other aspects of the tool. Finally, we asked panel memberswhether, collectively, all of the items provided a representative sample of the domain of itemsthat measure family member perceived self-efficacy in decision making for a terminally illfamily member. Based on panel member input, we revised several items to make them morespecific.One reviewer recommended that the scale accommodate both a single family member whowould be the decision maker with or for a terminally ill loved one and the situation in whichseveral family members would serve in this role. We addressed this concern by giving thefollowing directions at the start of the scale, “In some families, one person makes health caredecisions with a sick loved one. In other families, several family members or friends makedecisions with the sick loved one. When answering the questions below, please keep in mindyour particular situation.” We wanted to allow for one person to complete the scale with inputfrom others without requiring each family member to complete his or her own scale. We alsochanged the anchors to “cannot do at all” to “certain I can do” to more clearly reflect theconstruct of self-efficacy on which the scale was grounded. The conscious scenario in the toolhas the stem, “If my loved one prefers to have help in making health care decisions, I amconfident that I will be able to help: …”. The unconscious scenario begins with, “If my lovedone becomes too ill to make health care decisions, I am confident that I will be able to: …”. Pilot Testing the ScaleSample— We obtained approval from the Johns Hopkins Medicine Institutional ReviewBoard for a pilot study of this instrument as part of a larger pilot study of a family decision-making self-efficacy intervention. This intervention study, which took place in the out-patientsetting, involved a brief guided patient–family discussion of the patient’s desire for involvingfamily in health care decisions and the family member’s confidence that he or she could takeon this role. The discussion was tailored to address any low levels of family decision-makingself-efficacy followed by recommendations for further discussion at home. Inclusion criteriafor patients were having a preoperative appointment in the surgical clinic for pancreatic canceror in the ALS Comprehensive Care Clinic, 18 or older, and able to read and write in English.These two disease groups were selected because of two different trajectories to the end of life;one is characterized by a rapid decline (pancreatic cancer) and the other by a gradual declinein health status. Inclusion criteria for family members were having a patient who met the studyinclusion criteria who consented to inviting the family member to participate, 18 or older, andable to read and write in English. NOLAN et al.Page 3 Palliat Support Care . Author manuscript; available in PMC 2010 January 31. N I  H -P A A  u t  h  or M an u s  c r i   p t  N I  H -P A A  u t  h  or M an u s  c r i   p t  N I  H -P A A  u t  h  or M an u s  c r i   p t    Procedures— A caregiver in the clinic asked patients if they would like to hear about thisstudy, and if the patient was interested, one of the research team members described the studyand obtained written consent from interested patients and family members. In most cases, thefamily member accompanied the patient to the clinic. Twenty-six patients (46%) approachedto participate declined, so their family member was not invited to participate. Thirty patientsand family members consented to participate and were enrolled. We gave family members boththe conscious and unconscious scenarios within the Family Decision-Making Self-EfficacyScale in the clinic at baseline along with a demographic form that we developed.We tested the interitem correlations and item to total scale correlations using the Pearson’sCorrelation to determine the internal reliability of the scale. We dropped items from the scalethat had at least one interitem correlation less than r  = .40. Then we tested item to total scorecorrelations. Once a final version of the scale was obtained, we used the Cronbach alpha testto measure the internal reliability of each version of the family decision-making scale. We alsoperformed a test–retest reliability on a subsample of six family members at baseline and at 4weeks. During the pilot, we dropped one additional item that asked the extent to which thefamily member felt prepared to discuss the patient’s funeral if the patient wanted to discussthis. This was deleted as a family member thought that this was an upsetting question. Thefinal conscious and unconscious scale versions are in Appendixes I and II, respectively. Known Groups Validity— According to Self-Efficacy Theory, family members withexperience making decisions for an ill loved one should have greater self-efficacy for thisbehavior than those without this experience. In our qualitative work and the qualitative work of others, surrogate decision makers have described this type of experience as helpful inpreparing them for the decision making role (Vig et al., 2007; Nolan et al., 2008). Also, previousstudies of caregiver self-efficacy have revealed that spouses have lower levels of self-efficacycompared to nonspouses (Depp et al., 2005). To test these relationships in this study, we usedStudent’s t  test for independent groups to see if there was a difference in the family decision-making self-efficacy between those with and without experience with this type of decisionmaking and whether there were differences between spouse and nonspouse family members. RESULTS We recruited a convenience sample of 30 surrogates of patients with pancreatic cancer or ALS.Table 1 provides a summary of the patient and family characteristics. Psychometric Properties After we dropped items that had interitem correlations of less than .40, 13 items remained inthe conscious version of the scale and 13 items remained in the unconscious version of thescale. They were not the same items, however. So, we identified a subscale with an overlap of 9 items common to both versions of the scale for use by investigators or clinicians who desiredto compare the scores on the conscious and unconscious versions of the scale (see AppendixIII). For each version of the scale, we determined an item to total scale score correlation. SeeTable 2 for item to total score correlations in the conscious version of the scale and Table 3for item to total score correlations for the unconscious version of the scale.The 13 items within the conscious scenario of the scale had strong internal consistency(Cronbach’s α = .91) as did the 13 items within the unconscious scenario of the scale(Cronbach’s α = .95). The test–retest reliability using Pearson’s Correlation was r  = .96,  p = .002, in the 13-point conscious scenario and r  = .92,  p = .009, in the 13-point unconsciousscenario. For the 9-item overlap subscale, Cronbach’s α was .91 for the conscious scenarioand .93 in the unconscious scenario. Test–retest reliability was r  = .97,  p = .001, in the consciousscenario and r  = .90,  p = .01, in the unconscious scenario. NOLAN et al.Page 4 Palliat Support Care . Author manuscript; available in PMC 2010 January 31. N I  H -P A A  u t  h  or M an u s  c r i   p t  N I  H -P A A  u t  h  or M an u s  c r i   p t  N I  H -P A A  u t  h  or M an u s  c r i   p t  
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