- Email: [email protected]
Development of a Scale to Measure Quality of Visits With Relatives With Dementia
Development of a Scale to Measure Quality of Visits With Relatives With Dementia Ladislav Volicer, MD, PhD, Laura DeRuvo, BA, Kathryn Hyer, PhD, MPP, Joanna Piechniczek-Buczek, MD, and Mary Ellen Riordan, MSW Objectives: The purpose of this study was to develop a Family Visit Scale for Dementia (FAVS-D) measuring the quality of visits between nursing home residents with dementia and their family members. Design: Scale development using a two step process based on survey data. Setting: One Veterans Administration and eleven community nursing homes. Participants: One hundred and fifteen family members visiting residents with dementia. Measurements: Responses to a preliminary scale of 41 items, developed from a qualitative study, and responses to a 15 item scale, generated from the preliminary scale by eliminating items that were answered “does not apply” by a significant number of family members and by sequential iterations that removed items with low or high item total correlations or with high item-item correlations. Questionnaires were anonymously completed by family members after visit with a relative with dementia. Results: Final FAVS-D has 14 item after eliminating 1 question that family members considered confusing. The mean score of FAVS-D was 18.7 ⫹ 6.6 (mean ⫹ SD) with a range of ⫺10 to 28. After leaving out
Despite recent advances in our understanding of pathogenesis of Alzheimer’s disease, there is still no treatment available that prevents this disease or stops its progression.
School of Aging Studies, University of South Florida, Tampa, FL (L.V., L.D., K.H.); Geriatric Research Education Clinical Center, E.N. Rogers Memorial Veterans Hospital,Bedford, MA (L.V., J.P.-B., M.E.R.); Department of Psychiatry, Boston University School of Medicine, Boston, MA (L.V., J.P.-B.). The authors have no conflicts of interest regarding this article. Address correspondence to: Ladislav Volicer, MD, PhD, University of South Florida, School of Aging Studies, 337 Dekan Lane, Land O’Lakes, FL 34639. E-mail: [email protected]
Copyright ©2008 American Medical Directors Association DOI: 10.1016/j.jamda.2008.01.012 ORIGINAL STUDIES
one outlier value, the distribution of FAVS-D score was not different from normal distribution. Reliability coefficient alpha for FAVS-D was 0.77. The factor analysis produced 4 factors: factor 1 (7 items, ? ⫽ .82) related to nursing staff interaction with residents and visitors, factor 2 (4 items, ? ⫽ .73) related to meaningfulness of the visit, factor 3 (2 items, ? ⫽ .85) related to cleanliness and factor 4 (1 item) related to the connection established between the visitor and the resident. There was a significant difference between total FAVS-D scores of two facilities that provided most of the questionnaires. Subscores for nursing staff and meaningfulness factors in these two facilities were also significantly different, while subscores for cleanliness and connection were similar. Conclusions: This study indicates that it is possible to measure family visit satisfaction. The most important factors of FAVS-D, are factor 1 related to nursing staff activity and explaining 25% of variance, and factor 2 related to meaningfulness of the visit and explaining 16% of variance. When the facility staff becomes more involved with families of their residents and helps them make visit more meaningful, the families feel more satisfied with the visits. (J Am Med Dir Assoc 2008; 9: 327–331) Keywords: Dementia; visits; scale; quality
Because of the aging population, the number of individuals suffering from Alzheimer’s disease is increasing and recently reached 5 million Americans.1 Almost 50% of individuals suffering from Alzheimer’s disease and other progressive dementias are institutionalized in nursing homes because their family caregivers can no longer manage their care and over 70% of nursing home residents have cognitive impairment. Additional individuals with dementia reside in assisted living facilities, where it is estimated that half or more of residents have cognitive impairment.1 Continuing efforts are made to improve care for residents with dementia including the culture change movement that strives for individualized person-centered care that would improve a resident’s quality of life.2 Volicer et al 327
Visits from family and friends improve the quality of life for nursing home residents with dementia. Residents with frequent family visits had lower level of psychosocial impairment3 and decreased incidence of agitation.4 Family visitors help residents to maintain their sense of identity; monitor the care received by the resident and provide feedback to the staff and fill any gaps; are a source of information for care-planning purposes; and contribute to the nursing home community by interacting with other residents, relatives, and staff.5 Education of family members may further increase beneficial effects of visits by decreasing symptoms of depression and irritability of residents and by reducing use of restraints.6 One family education program even led to slower global deterioration of residents.7 Frequency of family visits is related to family member satisfaction with care.8 Several factors were identified as hindering continuous family involvement in resident care: resistance to institutional change, family members’ fears and hesitations, institutional rules and protocols, lack of institutional encouragement of family involvement, insufficient programs addressing the social and emotional needs of the family, and ineffective communication between the staff and families.9 The purpose of this study was to validate a scale to measure quality of visit between a relative and a resident with dementia who lives in a nursing home. Based on our previous qualitative study10 we constructed a scale to measure satisfaction with family visits of residents with dementia. METHODS Study 1 The staff on the Dementia Special Care Unit at the E.N. Rogers Memorial Veterans Hospital, Bedford, MA, identified patients with family members who would be willing to participate in the study. The study was approved by the institutional review board and informed consent was obtained before initiation of the study. In a previous study10 we investigated factors affecting quality of family visits by conducting 2 focus groups with family members of residents with dementia. Based on the information gathered in the focus group, a list of items was generated and organized into a preliminary scale. The pilot test scale consisted of 41 items covering a number of dimensions that characterize the quality of the visit. Family members were asked to complete the questionnaire immediately following the visit. Study 2 Nursing home facilities in Tampa Bay region of Florida were recruited for data collection. The initial 6 nursing home facilities that volunteered for the study were supplemented with an additional 5 sites because the number of returned forms was low. Family visit surveys with self-addressed postage-paid envelopes were sent to each of the 11 facilities; the staff of each facility was asked to distribute questionnaires to family members who just completed a visit. Family visitors completed questionnaires anonymously and either handed them back to the staff in a sealed envelope or mailed them to the 328 Volicer et al
research staff. To improve facility participation, each of the 11 facilities was offered a dementia management inservice with 1 hour continuing education credits (CEUs) for nursing staff. The responses to the 15 items were “strongly disagree,” “disagree,” “neutral,” “agree,” and “strongly agree.” For analysis, the responses were recoded to ⫺2, ⫺1, 0, 1, and 2 for questions indicating positive experience and 2, 1, 0, ⫺1, and ⫺2 for questions indicating negative experience. Factor analysis with varimax rotation was performed to establish possible subscales and distribution of values was compared with normal distribution by calculating skewness and kurtosis. Reliability of the scale was determined by calculation of coefficient alpha. Total score was calculated by adding individual scores for all items and Student t test was used to compare total scores obtained from 2 facilities. RESULTS Study 1 Responses from 24 participants in study 1 were used to construct the parsimonious scale for measuring quality of family visits. Measures of central tendency and dispersion of response for each item, item-item correlations, and corrected item-total correlations were computed. The items were reduced from 41 to 15 by eliminating items that were answered “does not apply” by more than 40% of family members and sequential iterations were used to remove items that did not have an item total correlation between ⫹ 0.30 and ⫹0.70 when examined with other items, and items that had high item-item correlations. Responses to the items were “strongly disagree,” “disagree,” “neutral,” “agree,” and “strongly agree.” They were coded as ⫺2, ⫺1, 0, 1, and 2 for questions indicating positive experience and 2, 1, 0, ⫺1, and ⫺2 for questions indicating negative experience. Study 2 A total of 116 survey responses from family members were received in Study 2. Ninety-one responses to the survey indicated that the family member had a loved one suffering from dementia, 22 of the responses said that their loved one was not suffering from dementia, and 3 responses were left blank. Thus, 91 responses were used for the analysis. Families commented on 2 items in the scale that they considered confusing. One item was stated as a double negative and was deleted; its deletion improved reliability of the scale. We kept the other item but reworded it to make it clearer. Thus, we finished with a 14-item final Family Visit Satisfaction– Dementia (FAVS-D) scale that was further evaluated. Most of the responses agreed with statements indicating positive experiences and disagreed with statements indicating negative experiences (Table 1). The mean score of FAVS-D was 18.7 ⫾ 6.6 (mean ⫾ SD) with a range of ⫺10 to 28. Distribution of the scores was skewed to the right (⫺1.32 ⫾ 0.25) with increased kurtosis (3.28 ⫾ 0.50) (Figure 1). However, after leaving out 1 outlier the distribution was not different from normal distribution with skewness of ⫺0.71 ⫾ 0.26 and kurtosis of 0.39 ⫾ 0.50. Reliability coefficient alpha for FAVS-D was 0.77. JAMDA – June 2008
Table 1. Factor Analysis of Family Visit Satisfaction⫺Dementia (FAVS-D) Scale (n ⫽ 91) Item
Factor 1
1. The visit was successful because my loved one was content and at ease. 2. The visit was successful because I was able to establish a connection with my loved one. 3. The visit was successful because I held hands or provided massage to my loved one. 4. The visit was successful because I had a purpose for my visit, such as assisting my loved one at mealtime. 5. The visit was successful because I had access to food or activity items. 6. The visit was successful because I saw that my loved one had good interactions with the staff. 7. The visit was successful because my loved one was not upset when I was leaving. 8. The visit was not successful because the lack of cleanliness of my loved one interfered with the quality of the visit. 9. The visit was not successful because the level of cleanliness of other residents interfered with my visit. 10. The visit was successful because I was greeted by staff when I came to the ward. 11. The visit was successful because the staff assisted me in making my visit more pleasant. 12. The visit was successful because I noticed that the staff paid attention to the residents’ dignity and privacy. 13. The visit was successful because the staff was available to respond to my medical or status questions. 14. The visit was successful because of the support that I received from other visitors. Eigenvalue Percent variance
Factor 2
Factor 3
Factor 4
Mean ⴞ SD
0.65
0.10
⫺0.01
0.24
1.52 ⫾ 0.68
0.08
0.07
0.12
0.89
1.26 ⫾ 1.10
0.14
0.64
0.11
0.46
1.29 ⫾ 0.86
0.03
0.84
⫺0.02
0.07
1.01 ⫾ 1.04
0.29
0.75
⫺0.09
0.07
1.10 ⫾ 1.06
0.68
0.19
0.26
0.42
1.62 ⫾ 0.71
0.56
0.10
0.01
⫺0.01
0.87 ⫾ 1.17
0.16
⫺0.05
0.93
0.01
1.37 ⫾ 1.07
0.11
⫺0.12
0.88
0.16
1.35 ⫾ 1.14
0.78
0.05
0.12
⫺0.26
1.63 ⫾ 0.77
0.75
0.18
0.09
⫺0.20
1.67 ⫾ 0.63
0.68
0.21
0.18
0.09
1.73 ⫾ 0.63
0.73
-0.02
0.00
0.31
1.66 ⫾ 0.81
0.22
0.63
-0.19
⫺0.19
0.74 ⫾ 1.07
3.56 25.4
2.24 16.0
1.83 13.1
1.53 10.9
Loadings used to identify factors are underlined
The factor analysis showed 4 different factors (Table 1). Seven items that loaded predominantly on the first factor were related to the nursing staff interaction with residents and
NUMBER OF PARTICIPANTS
40
30
visitors. Four items that loaded on the second factor were related to meaningfulness of the visit. Two items loading on the third factor were concerned with cleanliness, and the only item loading on the last factor was related to ability to establish connection between the visitor and the resident. The coefficients alpha were 0.82 for the first, 0.73 for the second, and 0.85 for the third subscale. There was a significant difference between total FAVS-D scores of 2 facilities that provided most of the questionnaires (Table 2). Subscores for nursing staff and meaningfulness factors in these 2 facilities were also significantly different, while subscores for cleanliness and connection were similar.
20 Table 2. Differences between Family Visit Satisfaction⫺Dementia (FAVS-D) Scores in 2 Facilities
10
0 -10,0 -5,0
0,0
5,0
10,0 15,0
20,0
25,0 30,0
TOTAL SCORE Fig. 1. Distribution of FAVS-D total scores with superimposed normal distribution (the range of possible scores is from –28 to 28). ORIGINAL STUDIES
Score
Facility 1 (n ⴝ 10)
Facility 2 (n ⴝ 67)
P
Total Nursing staff Meaningfulness Cleanliness Connection
13.8 ⫾ 10 8.1 ⫾ 5.8 2.2 ⫾ 3.3 2.1 ⫾ 2.5 1.4 ⫾ 1.3
19.3 ⫾ 5.8 11.0 ⫾ 3.4 4.3 ⫾ 2.8 2.9 ⫾ 2.0 1.2 ⫾ 1.1
.013 .026 .040 .281 .571
Numbers are means ⫾ SD Volicer et al 329
DISCUSSION Results of this study indicate that it is possible to measure reliably satisfaction of family members during visits of their institutionalized relatives. Validity of FAVS-D is supported by an ability to find significant differences between scores obtained at 2 different facilities, even though it was an unexpected finding. Distribution of the scores is skewed to the right but the predominance of positive responses was probably because most responses were obtained from a facility where family members were more satisfied with their visits than in other facilities. Factor analysis of FAVS-D indicated presence of 4 factors. Three of them suggest ways the visits might be improved, while the fourth one, Connectedness, depends on the severity of resident’s dementia. The most important factor of FAVS-D, which explains 25% of variance is related to nursing staff activity. The visit is more successful if the resident is content and at ease, the family sees that the resident has good interaction with the staff, and the staff pays attention to the resident’s dignity and privacy. Success of the visit is improved if the staff greets the visitors, assists them, and responds to their questions. Staff may also help to distract a resident when the family visitor is leaving to prevent the resident from becoming upset by the departure. Family members’ satisfaction with nursing homes increases if the staff acknowledges and individualizes care based on the resident.11 Meaningful activities, privacy, and dignity are all domains in Kane’s12 quality-of-life scale for nursing home residents. The second factor addresses meaningfulness of the visit. The visit is more meaningful if the visitor is instructed about activities that can be done even with residents with advanced dementia. Massage and feeding is listed in FAVS-D but other activities would be helpful also. Improvement of this factor requires involvement of all disciplines. Dietary service may provide food items while activity professionals may instruct family members in meaningful activities and provide supplies for them. Social workers could help by organizing support groups for family members that would increase support the visitors receive from other visitors. Cleanliness of the residents is another important factor determining success of the visit. This factor is probably already recognized widely and it is interesting that there was no significant difference in this factor between the 2 facilities that had significantly different total FAVS-D scores. The FAVS-D and its subscales have very good reliability with alpha between 0.73 and 0.85. It will be important to establish how sensitive this scale will be in studies that will attempt to improve quality of family visits with institutionalized relatives with dementia. The factors found by factor analysis are similar to factors that were detected in the original qualitative study.10 Personal domain is similar to the meaningfulness of the visits (Factor 2), while interpersonal domain covers interaction between visitors and the staff but also between staff and the residents (Factor 1). Environmental domain is represented by cleanliness of the residents (Factor 3). Although cleanliness of the environment was not included in the final FAVS-D, attention to it is also very important. Since the number of the 330 Volicer et al
respondents in Study 1 was relatively low, it is possible that different items would be selected if the study were repeated. Another limitation of this study is low number of items in Factors 3 and 4. However, the alpha is quite high for the Factor 3 subscale and Factor 4 is related to severity of dementia that may not be influenced by programs designed to improve quality of family visits. Our goal was to design a parsimonious scale that may be easily used in clinical research. The importance of remaining physically close and maintaining intimate contact between the family member and the loved one with dementia reminds the patient that he or she is still loved, is a vital part of the family unit, and gives meaning to the visit. Keeping the connection open between the patient and the family member for as long as possible is essential to maintaining the resident’s comfort and ease and quality of life. The meaningful activity gives a sense of purpose to the family member and gives a focal point for the resident with dementia. The meaningfulness and sharing of the interactions with other visitors can allow others to find comfort and empathy in those people who are experiencing the same set of circumstances. Nursing home staff members need to recognize their role in helping to facilitate purposeful and meaningful activities for patients and their families, maintaining the cleanliness of each resident, and encouraging connections between the family members to their loved one and to other visitors. Studies of nursing home staff perceptions ranking the importance of quality-of-life domains for cognitively impaired residents revealed that certified nursing assistants were more likely than licensed nurses to recognize that they provided the comfort, security, dignity, and meaningful relationships that can improve a resident’s quality of life.13 While all nursing home staff acknowledged the importance of quality of life, cognitive impairment decreased both the staff’s ranking of the importance of qualityof-life domains and decreased the staff’s perception of their ability to influence that quality.14 By developing a quality of family visit scale we hope staff will recognize their role in facilitating visits. When nursing home staff members become more involved with families and keep open lines of patient-care communication, the family members are more inclined to perceive their visits as successful and feel confident that their loved one is being well cared for in clean and comfortable surroundings. It is hoped that availability of FAVS-D will stimulate research in this area and help nursing home staff recognize their direct role in improving quality of life and their indirect role by encouraging family to continue to visit and interact with family members suffering with dementia. FAVS-D could be also used to document the effectiveness of programs that strive to improve the visiting experience of family members. ACKNOWLEDGMENTS The authors thank Dr Ross Andel for his statistical consultation in the preparation of this manuscript and Rosann Guida, a University of South Florida intern, for her assistance with data collection. The authors are also grateful to all of the nursing home administrators, staff, residents, and their families, for their interest and willingness to participate in our study. JAMDA – June 2008
REFERENCES 1. Alzheimer’s Association. Alzheimer’s disease facts and figures 2007. Alzheimer’s Association. Available at: http://www.alz.org/alzheimers_ disease_facts_figures.asp. Accessed October 10, 2007. 2. Misiorski S. Pioneering culture change. Nursing Homes Magazine. Available at: http://findarticles.com/p/articles/mi_m3830/is_10_52/ ai_110267294. Accessed October 10, 2007. 3. Green VL, Monahan DJ. The impact of visitation on patient well-being in nursing homes. Gerontologist 1982;22:424 – 428. 4. Martin-Cook K, Hynan L, Chafetz PK, Weiner MF. Impact of family visits on agitation in residents with dementia. Am J Alzheimers Dis Other Demen 2001;16:163–166. 5. Davies S, Nolan M. “Making if better”: Self-perceived roles of family caregivers of older people living in care homes: a qualitative study. Int J Nurs Stud 2006;43:281–291. 6. McCallion P, Toseland RW, Freeman K. An evaluation of a family visit education program. J Am Geriatr Soc 1999;47:203–214. 7. Jablonski RA, Reed D, Maas ML. Care intervention for older adults with Alzheimer’s disease and related dementias: Effect of family involvement on cognitive and functional outcomes in nursing homes. J Gerontol Nurs 2005;31:38 – 48.
ORIGINAL STUDIES
8. Tornatore JB, Grant LA. Family caregiver satisfaction with nursing home after placement of a relative with dementia. J Gerontol B Psychol Sci Soc Sci 2004;59:580 –588. 9. Logue RM. Maintaining family connectedness in long-term care: An advanced practice approach to family-centered nursing homes. J Gerontol Nurs 2003;29:24 –31. 10. Piechniczek-Buczek J, Riordan ME, Volicer L. Family member perception of quality of their visits with relatives with dementia: A pilot study. J Am Med Dir Assoc 2007;8:166 –172. 11. Rantz MJ, Zwygart-Stauffacher M, Popejoy L, et al. Nursing home quality: A multidimensional theoretical model integrating the views of consumers and providers. J Nurs Care Qual 1999;14:16 –37. 12. Kane RA. Definition, measurement, and correlates of quality of life in nursing homes: Toward a reasonable practice, research, and policy agenda. Gerontologist 2003;43:28 –36. 13. Gessert C, Hyer K, Kane RL, Kane RA, Rockwood T. Cognitive impairment and quality of life: Views of nursing home providers. Alzheimer Dis Assoc Disord 2005;19:85–90. 14. Kane RL, Rockwood T, Hyer K, et al. Rating of the importance of nursing home residents’ quality of life. J Am Geriatr Soc 2005;53:2076 – 2082.
Volicer et al 331
Despite recent advances in our understanding of pathogenesis of Alzheimer’s disease, there is still no treatment available that prevents this disease or stops its progression.
School of Aging Studies, University of South Florida, Tampa, FL (L.V., L.D., K.H.); Geriatric Research Education Clinical Center, E.N. Rogers Memorial Veterans Hospital,Bedford, MA (L.V., J.P.-B., M.E.R.); Department of Psychiatry, Boston University School of Medicine, Boston, MA (L.V., J.P.-B.). The authors have no conflicts of interest regarding this article. Address correspondence to: Ladislav Volicer, MD, PhD, University of South Florida, School of Aging Studies, 337 Dekan Lane, Land O’Lakes, FL 34639. E-mail: [email protected]
Copyright ©2008 American Medical Directors Association DOI: 10.1016/j.jamda.2008.01.012 ORIGINAL STUDIES
one outlier value, the distribution of FAVS-D score was not different from normal distribution. Reliability coefficient alpha for FAVS-D was 0.77. The factor analysis produced 4 factors: factor 1 (7 items, ? ⫽ .82) related to nursing staff interaction with residents and visitors, factor 2 (4 items, ? ⫽ .73) related to meaningfulness of the visit, factor 3 (2 items, ? ⫽ .85) related to cleanliness and factor 4 (1 item) related to the connection established between the visitor and the resident. There was a significant difference between total FAVS-D scores of two facilities that provided most of the questionnaires. Subscores for nursing staff and meaningfulness factors in these two facilities were also significantly different, while subscores for cleanliness and connection were similar. Conclusions: This study indicates that it is possible to measure family visit satisfaction. The most important factors of FAVS-D, are factor 1 related to nursing staff activity and explaining 25% of variance, and factor 2 related to meaningfulness of the visit and explaining 16% of variance. When the facility staff becomes more involved with families of their residents and helps them make visit more meaningful, the families feel more satisfied with the visits. (J Am Med Dir Assoc 2008; 9: 327–331) Keywords: Dementia; visits; scale; quality
Because of the aging population, the number of individuals suffering from Alzheimer’s disease is increasing and recently reached 5 million Americans.1 Almost 50% of individuals suffering from Alzheimer’s disease and other progressive dementias are institutionalized in nursing homes because their family caregivers can no longer manage their care and over 70% of nursing home residents have cognitive impairment. Additional individuals with dementia reside in assisted living facilities, where it is estimated that half or more of residents have cognitive impairment.1 Continuing efforts are made to improve care for residents with dementia including the culture change movement that strives for individualized person-centered care that would improve a resident’s quality of life.2 Volicer et al 327
Visits from family and friends improve the quality of life for nursing home residents with dementia. Residents with frequent family visits had lower level of psychosocial impairment3 and decreased incidence of agitation.4 Family visitors help residents to maintain their sense of identity; monitor the care received by the resident and provide feedback to the staff and fill any gaps; are a source of information for care-planning purposes; and contribute to the nursing home community by interacting with other residents, relatives, and staff.5 Education of family members may further increase beneficial effects of visits by decreasing symptoms of depression and irritability of residents and by reducing use of restraints.6 One family education program even led to slower global deterioration of residents.7 Frequency of family visits is related to family member satisfaction with care.8 Several factors were identified as hindering continuous family involvement in resident care: resistance to institutional change, family members’ fears and hesitations, institutional rules and protocols, lack of institutional encouragement of family involvement, insufficient programs addressing the social and emotional needs of the family, and ineffective communication between the staff and families.9 The purpose of this study was to validate a scale to measure quality of visit between a relative and a resident with dementia who lives in a nursing home. Based on our previous qualitative study10 we constructed a scale to measure satisfaction with family visits of residents with dementia. METHODS Study 1 The staff on the Dementia Special Care Unit at the E.N. Rogers Memorial Veterans Hospital, Bedford, MA, identified patients with family members who would be willing to participate in the study. The study was approved by the institutional review board and informed consent was obtained before initiation of the study. In a previous study10 we investigated factors affecting quality of family visits by conducting 2 focus groups with family members of residents with dementia. Based on the information gathered in the focus group, a list of items was generated and organized into a preliminary scale. The pilot test scale consisted of 41 items covering a number of dimensions that characterize the quality of the visit. Family members were asked to complete the questionnaire immediately following the visit. Study 2 Nursing home facilities in Tampa Bay region of Florida were recruited for data collection. The initial 6 nursing home facilities that volunteered for the study were supplemented with an additional 5 sites because the number of returned forms was low. Family visit surveys with self-addressed postage-paid envelopes were sent to each of the 11 facilities; the staff of each facility was asked to distribute questionnaires to family members who just completed a visit. Family visitors completed questionnaires anonymously and either handed them back to the staff in a sealed envelope or mailed them to the 328 Volicer et al
research staff. To improve facility participation, each of the 11 facilities was offered a dementia management inservice with 1 hour continuing education credits (CEUs) for nursing staff. The responses to the 15 items were “strongly disagree,” “disagree,” “neutral,” “agree,” and “strongly agree.” For analysis, the responses were recoded to ⫺2, ⫺1, 0, 1, and 2 for questions indicating positive experience and 2, 1, 0, ⫺1, and ⫺2 for questions indicating negative experience. Factor analysis with varimax rotation was performed to establish possible subscales and distribution of values was compared with normal distribution by calculating skewness and kurtosis. Reliability of the scale was determined by calculation of coefficient alpha. Total score was calculated by adding individual scores for all items and Student t test was used to compare total scores obtained from 2 facilities. RESULTS Study 1 Responses from 24 participants in study 1 were used to construct the parsimonious scale for measuring quality of family visits. Measures of central tendency and dispersion of response for each item, item-item correlations, and corrected item-total correlations were computed. The items were reduced from 41 to 15 by eliminating items that were answered “does not apply” by more than 40% of family members and sequential iterations were used to remove items that did not have an item total correlation between ⫹ 0.30 and ⫹0.70 when examined with other items, and items that had high item-item correlations. Responses to the items were “strongly disagree,” “disagree,” “neutral,” “agree,” and “strongly agree.” They were coded as ⫺2, ⫺1, 0, 1, and 2 for questions indicating positive experience and 2, 1, 0, ⫺1, and ⫺2 for questions indicating negative experience. Study 2 A total of 116 survey responses from family members were received in Study 2. Ninety-one responses to the survey indicated that the family member had a loved one suffering from dementia, 22 of the responses said that their loved one was not suffering from dementia, and 3 responses were left blank. Thus, 91 responses were used for the analysis. Families commented on 2 items in the scale that they considered confusing. One item was stated as a double negative and was deleted; its deletion improved reliability of the scale. We kept the other item but reworded it to make it clearer. Thus, we finished with a 14-item final Family Visit Satisfaction– Dementia (FAVS-D) scale that was further evaluated. Most of the responses agreed with statements indicating positive experiences and disagreed with statements indicating negative experiences (Table 1). The mean score of FAVS-D was 18.7 ⫾ 6.6 (mean ⫾ SD) with a range of ⫺10 to 28. Distribution of the scores was skewed to the right (⫺1.32 ⫾ 0.25) with increased kurtosis (3.28 ⫾ 0.50) (Figure 1). However, after leaving out 1 outlier the distribution was not different from normal distribution with skewness of ⫺0.71 ⫾ 0.26 and kurtosis of 0.39 ⫾ 0.50. Reliability coefficient alpha for FAVS-D was 0.77. JAMDA – June 2008
Table 1. Factor Analysis of Family Visit Satisfaction⫺Dementia (FAVS-D) Scale (n ⫽ 91) Item
Factor 1
1. The visit was successful because my loved one was content and at ease. 2. The visit was successful because I was able to establish a connection with my loved one. 3. The visit was successful because I held hands or provided massage to my loved one. 4. The visit was successful because I had a purpose for my visit, such as assisting my loved one at mealtime. 5. The visit was successful because I had access to food or activity items. 6. The visit was successful because I saw that my loved one had good interactions with the staff. 7. The visit was successful because my loved one was not upset when I was leaving. 8. The visit was not successful because the lack of cleanliness of my loved one interfered with the quality of the visit. 9. The visit was not successful because the level of cleanliness of other residents interfered with my visit. 10. The visit was successful because I was greeted by staff when I came to the ward. 11. The visit was successful because the staff assisted me in making my visit more pleasant. 12. The visit was successful because I noticed that the staff paid attention to the residents’ dignity and privacy. 13. The visit was successful because the staff was available to respond to my medical or status questions. 14. The visit was successful because of the support that I received from other visitors. Eigenvalue Percent variance
Factor 2
Factor 3
Factor 4
Mean ⴞ SD
0.65
0.10
⫺0.01
0.24
1.52 ⫾ 0.68
0.08
0.07
0.12
0.89
1.26 ⫾ 1.10
0.14
0.64
0.11
0.46
1.29 ⫾ 0.86
0.03
0.84
⫺0.02
0.07
1.01 ⫾ 1.04
0.29
0.75
⫺0.09
0.07
1.10 ⫾ 1.06
0.68
0.19
0.26
0.42
1.62 ⫾ 0.71
0.56
0.10
0.01
⫺0.01
0.87 ⫾ 1.17
0.16
⫺0.05
0.93
0.01
1.37 ⫾ 1.07
0.11
⫺0.12
0.88
0.16
1.35 ⫾ 1.14
0.78
0.05
0.12
⫺0.26
1.63 ⫾ 0.77
0.75
0.18
0.09
⫺0.20
1.67 ⫾ 0.63
0.68
0.21
0.18
0.09
1.73 ⫾ 0.63
0.73
-0.02
0.00
0.31
1.66 ⫾ 0.81
0.22
0.63
-0.19
⫺0.19
0.74 ⫾ 1.07
3.56 25.4
2.24 16.0
1.83 13.1
1.53 10.9
Loadings used to identify factors are underlined
The factor analysis showed 4 different factors (Table 1). Seven items that loaded predominantly on the first factor were related to the nursing staff interaction with residents and
NUMBER OF PARTICIPANTS
40
30
visitors. Four items that loaded on the second factor were related to meaningfulness of the visit. Two items loading on the third factor were concerned with cleanliness, and the only item loading on the last factor was related to ability to establish connection between the visitor and the resident. The coefficients alpha were 0.82 for the first, 0.73 for the second, and 0.85 for the third subscale. There was a significant difference between total FAVS-D scores of 2 facilities that provided most of the questionnaires (Table 2). Subscores for nursing staff and meaningfulness factors in these 2 facilities were also significantly different, while subscores for cleanliness and connection were similar.
20 Table 2. Differences between Family Visit Satisfaction⫺Dementia (FAVS-D) Scores in 2 Facilities
10
0 -10,0 -5,0
0,0
5,0
10,0 15,0
20,0
25,0 30,0
TOTAL SCORE Fig. 1. Distribution of FAVS-D total scores with superimposed normal distribution (the range of possible scores is from –28 to 28). ORIGINAL STUDIES
Score
Facility 1 (n ⴝ 10)
Facility 2 (n ⴝ 67)
P
Total Nursing staff Meaningfulness Cleanliness Connection
13.8 ⫾ 10 8.1 ⫾ 5.8 2.2 ⫾ 3.3 2.1 ⫾ 2.5 1.4 ⫾ 1.3
19.3 ⫾ 5.8 11.0 ⫾ 3.4 4.3 ⫾ 2.8 2.9 ⫾ 2.0 1.2 ⫾ 1.1
.013 .026 .040 .281 .571
Numbers are means ⫾ SD Volicer et al 329
DISCUSSION Results of this study indicate that it is possible to measure reliably satisfaction of family members during visits of their institutionalized relatives. Validity of FAVS-D is supported by an ability to find significant differences between scores obtained at 2 different facilities, even though it was an unexpected finding. Distribution of the scores is skewed to the right but the predominance of positive responses was probably because most responses were obtained from a facility where family members were more satisfied with their visits than in other facilities. Factor analysis of FAVS-D indicated presence of 4 factors. Three of them suggest ways the visits might be improved, while the fourth one, Connectedness, depends on the severity of resident’s dementia. The most important factor of FAVS-D, which explains 25% of variance is related to nursing staff activity. The visit is more successful if the resident is content and at ease, the family sees that the resident has good interaction with the staff, and the staff pays attention to the resident’s dignity and privacy. Success of the visit is improved if the staff greets the visitors, assists them, and responds to their questions. Staff may also help to distract a resident when the family visitor is leaving to prevent the resident from becoming upset by the departure. Family members’ satisfaction with nursing homes increases if the staff acknowledges and individualizes care based on the resident.11 Meaningful activities, privacy, and dignity are all domains in Kane’s12 quality-of-life scale for nursing home residents. The second factor addresses meaningfulness of the visit. The visit is more meaningful if the visitor is instructed about activities that can be done even with residents with advanced dementia. Massage and feeding is listed in FAVS-D but other activities would be helpful also. Improvement of this factor requires involvement of all disciplines. Dietary service may provide food items while activity professionals may instruct family members in meaningful activities and provide supplies for them. Social workers could help by organizing support groups for family members that would increase support the visitors receive from other visitors. Cleanliness of the residents is another important factor determining success of the visit. This factor is probably already recognized widely and it is interesting that there was no significant difference in this factor between the 2 facilities that had significantly different total FAVS-D scores. The FAVS-D and its subscales have very good reliability with alpha between 0.73 and 0.85. It will be important to establish how sensitive this scale will be in studies that will attempt to improve quality of family visits with institutionalized relatives with dementia. The factors found by factor analysis are similar to factors that were detected in the original qualitative study.10 Personal domain is similar to the meaningfulness of the visits (Factor 2), while interpersonal domain covers interaction between visitors and the staff but also between staff and the residents (Factor 1). Environmental domain is represented by cleanliness of the residents (Factor 3). Although cleanliness of the environment was not included in the final FAVS-D, attention to it is also very important. Since the number of the 330 Volicer et al
respondents in Study 1 was relatively low, it is possible that different items would be selected if the study were repeated. Another limitation of this study is low number of items in Factors 3 and 4. However, the alpha is quite high for the Factor 3 subscale and Factor 4 is related to severity of dementia that may not be influenced by programs designed to improve quality of family visits. Our goal was to design a parsimonious scale that may be easily used in clinical research. The importance of remaining physically close and maintaining intimate contact between the family member and the loved one with dementia reminds the patient that he or she is still loved, is a vital part of the family unit, and gives meaning to the visit. Keeping the connection open between the patient and the family member for as long as possible is essential to maintaining the resident’s comfort and ease and quality of life. The meaningful activity gives a sense of purpose to the family member and gives a focal point for the resident with dementia. The meaningfulness and sharing of the interactions with other visitors can allow others to find comfort and empathy in those people who are experiencing the same set of circumstances. Nursing home staff members need to recognize their role in helping to facilitate purposeful and meaningful activities for patients and their families, maintaining the cleanliness of each resident, and encouraging connections between the family members to their loved one and to other visitors. Studies of nursing home staff perceptions ranking the importance of quality-of-life domains for cognitively impaired residents revealed that certified nursing assistants were more likely than licensed nurses to recognize that they provided the comfort, security, dignity, and meaningful relationships that can improve a resident’s quality of life.13 While all nursing home staff acknowledged the importance of quality of life, cognitive impairment decreased both the staff’s ranking of the importance of qualityof-life domains and decreased the staff’s perception of their ability to influence that quality.14 By developing a quality of family visit scale we hope staff will recognize their role in facilitating visits. When nursing home staff members become more involved with families and keep open lines of patient-care communication, the family members are more inclined to perceive their visits as successful and feel confident that their loved one is being well cared for in clean and comfortable surroundings. It is hoped that availability of FAVS-D will stimulate research in this area and help nursing home staff recognize their direct role in improving quality of life and their indirect role by encouraging family to continue to visit and interact with family members suffering with dementia. FAVS-D could be also used to document the effectiveness of programs that strive to improve the visiting experience of family members. ACKNOWLEDGMENTS The authors thank Dr Ross Andel for his statistical consultation in the preparation of this manuscript and Rosann Guida, a University of South Florida intern, for her assistance with data collection. The authors are also grateful to all of the nursing home administrators, staff, residents, and their families, for their interest and willingness to participate in our study. JAMDA – June 2008
REFERENCES 1. Alzheimer’s Association. Alzheimer’s disease facts and figures 2007. Alzheimer’s Association. Available at: http://www.alz.org/alzheimers_ disease_facts_figures.asp. Accessed October 10, 2007. 2. Misiorski S. Pioneering culture change. Nursing Homes Magazine. Available at: http://findarticles.com/p/articles/mi_m3830/is_10_52/ ai_110267294. Accessed October 10, 2007. 3. Green VL, Monahan DJ. The impact of visitation on patient well-being in nursing homes. Gerontologist 1982;22:424 – 428. 4. Martin-Cook K, Hynan L, Chafetz PK, Weiner MF. Impact of family visits on agitation in residents with dementia. Am J Alzheimers Dis Other Demen 2001;16:163–166. 5. Davies S, Nolan M. “Making if better”: Self-perceived roles of family caregivers of older people living in care homes: a qualitative study. Int J Nurs Stud 2006;43:281–291. 6. McCallion P, Toseland RW, Freeman K. An evaluation of a family visit education program. J Am Geriatr Soc 1999;47:203–214. 7. Jablonski RA, Reed D, Maas ML. Care intervention for older adults with Alzheimer’s disease and related dementias: Effect of family involvement on cognitive and functional outcomes in nursing homes. J Gerontol Nurs 2005;31:38 – 48.
ORIGINAL STUDIES
8. Tornatore JB, Grant LA. Family caregiver satisfaction with nursing home after placement of a relative with dementia. J Gerontol B Psychol Sci Soc Sci 2004;59:580 –588. 9. Logue RM. Maintaining family connectedness in long-term care: An advanced practice approach to family-centered nursing homes. J Gerontol Nurs 2003;29:24 –31. 10. Piechniczek-Buczek J, Riordan ME, Volicer L. Family member perception of quality of their visits with relatives with dementia: A pilot study. J Am Med Dir Assoc 2007;8:166 –172. 11. Rantz MJ, Zwygart-Stauffacher M, Popejoy L, et al. Nursing home quality: A multidimensional theoretical model integrating the views of consumers and providers. J Nurs Care Qual 1999;14:16 –37. 12. Kane RA. Definition, measurement, and correlates of quality of life in nursing homes: Toward a reasonable practice, research, and policy agenda. Gerontologist 2003;43:28 –36. 13. Gessert C, Hyer K, Kane RL, Kane RA, Rockwood T. Cognitive impairment and quality of life: Views of nursing home providers. Alzheimer Dis Assoc Disord 2005;19:85–90. 14. Kane RL, Rockwood T, Hyer K, et al. Rating of the importance of nursing home residents’ quality of life. J Am Geriatr Soc 2005;53:2076 – 2082.
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