Family Empowerment Satisfaction Team 2008 Youth Inpatient Satisfaction Survey Report
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1 MENTAL HEALTH ASSOCIATION OF SOUTHEASTERN PENNSYLVANIA Family & Youth Division Montgomery County Office Parents Involved Network (PIN) Parenting Plus Training & Education Center (TEC) Children s Crisis Response Center Advocacy Project (CRC-AP) Parent Empowerment for Advocacy through Knowledge (PEAK) Family/Empowerment/Satisfaction Team (FEST) Family Empowerment Satisfaction Team 2008 Youth Inpatient Satisfaction Survey Report Martha Hochschwender, Family Advocate William England, Division Director Family Empowerment Satisfaction Team (FEST) Montgomery County, PA Submitted February 19, 2009 to Montgomery County Behavioral Health 601 DeKalb Street, Suite 3 Norristown, PA Ext. 550 Fax: mha@mhasp.org A United Way Agency
2 TABLE OF CONTENTS PROJECT OVERVIEW 3 OBJECTIVE 4 PROCEDURES 4 Sample Tools Data Collection RESULTS.. 4 DISCUSSION. 7 Page2
3 2008 YOUTH INPATIENT SATISFACTION SURVEY Family Empowerment Satisfaction Team (FEST) Montgomery County is a program of the Family and Youth Division of the Mental Health Association of Southeastern Pennsylvania. It exists as an independent, nonprofit advocacy organization whose mission is to work together with parents and caregivers of children and adolescents with emotional and behavioral disorders to improve services and supports with the goal of making services more family driven. FEST involves Montgomery County stakeholders in the development and implementation of FEST studies and reports study results to stakeholders. FEST conducts outreach to secure information and input from families and youth who are receiving or recently received behavioral health services in Montgomery County. FEST facilitates communication between families and the behavioral health system about accessibility, appropriateness and effectiveness of services, as well as family satisfaction with services. Using a strengths-based Appreciative Inquiry approach, FEST asks families about their experiences - what worked and what can be improved, through questionnaires, interviews and focus groups and reports the findings to Montgomery County s Behavioral Health Office to support its continuous quality improvement efforts. At times a child or adolescent s behavioral health problems escalate in severity and may necessitate inpatient hospitalization in a psychiatric facility to help stabilize the condition as quickly as possible. These facilities have units designed to accommodate children and adolescents and meet the unique needs of these youth. The Horsham Clinic and Brooke Glen Behavioral Hospital are inpatient facilities located in Montgomery County offering programs for children and adolescents. Both these facilities are used by the county to provide necessary services for Montgomery County youth in crisis. Youth services at The Horsham Clinic are delivered in separate units for children ages 4-12 and for adolescents ages A team of psychiatrists, social workers, nurses, teachers, and counselors develop an individualized treatment plan, to address the specific needs of the child or adolescent. The family and youth, if able, participate in the treatment planning. Individual, group, and family therapy, as well as parent or caregiver and youth education may be integrated into the treatment plan. Brooke Glen Behavioral Hospital also offers services for children and adolescents in crisis from mental illness and behavioral disorders. Resources and support are available to help address the crisis and behavioral health disorder. Two units serve youth, one for children ages 5-12 and the other for adolescents ages Pre-teens ages may be placed in either unit based on maturity and individual needs. A physician-led team of clinical professionals focuses on treating each person - not just his or her illness. In 2008, Montgomery County Behavioral Health enlisted county satisfaction teams, including Family Empowerment Satisfaction Team (FEST) Montgomery County, to conduct independent satisfaction surveys with individuals and their families from the county who were receiving inpatient services through HealthChoices. FEST was asked to survey parents or caregivers and youth on their satisfaction with inpatient services at Brooke Glen Behavioral Hospital and The Horsham Clinic. All satisfaction surveys, whether for adult inpatient services or for youth services, included three state mandated, performancebased contract (PBC) questions and additional questions required by the county. FEST adapted county and state questions to make them applicable, in both language and content, to youth and their families, and incorporated a strengths-based approach used in all FEST surveys. Page3
4 FEST contacted both The Horsham Clinic and Brooke Glen Behavioral Hospital and met with the countydesignated representatives to explain that FEST would be conducting satisfaction surveys with families and youth receiving inpatient services in their facilities. FEST informed them of the methods they would use to elicit input from parent/caregivers and adolescents and described FEST s strengths-based approach to asking survey questions. FEST toured the children s and adolescent units at both facilities and had the opportunity to learn more about their programs. OBJECTIVE FEST designed the 2008 Youth Inpatient Satisfaction Survey to accommodate the needs of families in meeting the objective - measuring family and youth satisfaction with children s and adolescents inpatient services provided at The Horsham Clinic and Brooke Glen Behavioral Hospital. PROCEDURES When establishing the procedures for conducting this survey, FEST s foremost consideration was sensitivity to family needs during the child s hospitalization. FEST concluded that mailing questionnaires to parent/caregivers and adolescents within a week of receiving the youth s discharge data would be the least intrusive way to conduct the survey. Flyers notifying families to expect an important questionnaire in the mail were to be inserted in the discharge packets. FEST hoped that providing advanced notice would maximize the number of surveys completed by families. Survey Sample Parents or caregivers of children and adolescents who received youth inpatient services at The Horsham Clinic or Brooke Glen Behavioral Hospital through Montgomery County HealthChoices from October - December of 2008 were asked to participate in this survey. Tool FEST created three separate questionnaires to collect quantitative and qualitative data from parent/caregivers, adolescents, and children. Parent/Caregiver Survey with 28 questions, including the 3 state mandated questions (Questions 1-3) Youth Survey - Ages with 20 questions including the state mandated questions (Questions 3-5) Youth Survey - Ages 13 and Under asking five questions Data Collection FEST designed a flyer to be inserted in the discharge packets to explain to families that they would be receiving a questionnaire from FEST in the mail FEST mailed questionnaires to 15 parents or caregivers, within one week of receiving discharge data from Montgomery Count Behavioral Health, and included a Family and Youth Division brochure, cover letter, return envelope, and a youth questionnaire if the child was 13 years old or younger FEST mailed 6 questionnaires directly to adolescents, ages 14-18, with a brochure, cover letter and return envelope FEST called all parents or caregivers and youth 14 and over, approximately three weeks after the questionnaires were mailed, to ask if they had completed the questionnaire, would like another copy mailed or would complete the questionnaire over the phone and answer several additional questions RESULTS Of the 15 youth discharged from The Horsham Clinic and Brooke Glen Behavioral Hospital between October and December of 2008, 10 parent/caregivers (over 66%) completed the questionnaire. Many opted to complete it by phone. Four adolescents responded to the Youth Survey - Ages Page4
5 The results from the parent/caregiver survey have been reported in aggregate form, and all identifiable information has been omitted from the findings in the following summation. Only general information obtained from the survey for youth ages will be provided in this report to preserve confidentiality. Parent/caregivers were asked three state mandated questions. The responses to these Performance Based Contracting (PBC) questions are displayed in Table 1. Table 1 - Results of the Pennsylvania State Mandated Questions 1) In the last 12 months did you or your child have problems getting the help you need? :a T T: Yes (always) Sometimes No (never) No response Total 30% 0% 70% 0% 100% 2) What effect has the treatment your family received had on the quality of your child s life? Much A little About the A little Much No Total better better same worse worse response 20% 50% 30% 0% 0% 0% 100% 3) Were you and your child given the chance to make treatment decisions? Yes (always) Sometimes No (never) No response Total 60% 30% 10% 0% 100% Based on the findings from the quantitative data, parents and caregivers identified aspects of their child s inpatient experience that they perceived as positive. Tables 2-5 summarize the areas where parents and caregivers reported the highest levels of satisfaction. Table 2 TREATMENT DECISIONS Were invited to participate in treatment planning meetings Felt like an important part of child s inpatient treatment Table 3 STAFF COMMUNICATION Used language they could understand Kept them informed about their child s progress Discussed child s medication with them Table 4 STAFF SENSITIVITY Child was treated with dignity and respect Sensitive to child s and family s culture Table 5 PREPARATION FOR DISCHARGE Comfortable about aftercare plan Knew how to access aftercare supports 80% - True 80% - True T 80% - Always/ Mostly 70% - Always/ Mostly 90% - Yes 80% - Yes 100% - Yes 80% - Agree/Strongly Agree 80% - Agree/Strongly Agree Page5
6 When asked about their involvement in treatment decisions, a high percentage of parent/caregivers felt they had been included. The one exception was in response to the statement, the staff understood that I knew my child better than they did and valued my input, where only half the parent/caregivers agreed. Concerning staff communication, parents and caregivers reported high levels of satisfaction in the use of language they could understand, discussion about their child s medications, and being kept informed on their child s progress. 50% responded that someone was available to talk to them when they called about treatment concerns, while 40% reported they were sometimes available. 30% felt that staff pointed out what their child and family did well. Families, for the most part, perceived staff as sensitive in treating the child with dignity and respect and sensitive to the family and child s culture. 60% of parents and caregivers agreed that the care their child received was appropriate for his or her needs. 60% reported the staff helped them feel there was hope for improvement for their child, while 40% were not sure or disagreed. Only 40% of parent/caregivers reported feeling that the staff cared about the whole family, not just the child. When asked about preparation for discharge, parent/caregivers responded positively to all questions, with 70% answering that the staff helped prepare their child for returning home to make a smooth transition and that they felt they were included in discharge planning. 80% felt comfortable about the aftercare plan and knew how and where to access the after-care supports needed by the child. 60% of families reported they had not been informed or were not sure if they had been informed on how to use the hospital s complaint and grievance process. 60% said they would recommend the facility to other families for their children, 20% were not sure, and 20% said no. Adolescent Responses Adolescents were asked five questions about whether they felt the treatment they were receiving was right for them. 50% reported being involved in treatment planning and all responded that the treatment had been helpful - yes (25%), somewhat (75%). A summary of the responses to the state mandated questions, Questions 3-5 on the questionnaire, is as follows Were you given the chance to make treatment decisions? Yes (50%) In the last 12 months were you able to get the help you needed? Always/Mostly (75%) What effect has the treatment you received had on the quality of your life? 75% responded either a little better or much better. Adolescents reported satisfaction with staff communication, with the exception of feeling they were treated with dignity and respect, where a small percentage disagreed. Most youth did not agree with the statement, The staff helped my family understand how they could help me the most. In response to open-ended questions, youth felt there was at least one staff member they could talk to or go to for help. Several youth expressed concern about falling behind in school and thought it would help to be able to do their schoolwork while in the hospital. Most youth did not think there was enough to do and would like to go outside or to the gym more often. Only one questionnaire from Youth - 13 and under was returned. No results will be provided in this report. Page6
7 DISCUSSION Although the level of satisfaction reported in the area of Treatment Decisions was generally high, the majority of people chose mostly when answering three of the four questions asked. Interviews did not provide additional insight into specific improvements the hospitals could make. However, FEST recommends greater consideration be given to Question 7, the staff understood that I knew my child better than they did and valued my input, which was the question showing the lowest level of satisfaction in the area of Treatment Decisions. 50% of parent/caregivers did not agree with this statement. When interviewed by FEST, one person expressed that the staff thought they knew the child better, adding, I really didn t like that aspect of the treatment process. Recognition of the parent/caregiver as the expert in terms of knowing their child best gives validity to their input in related matters of treatment, and, in turn, might strengthen their feelings of value in helping make treatment decisions. When looking at the overall survey, questions about aspects of Staff Communication and Staff Sensitivity that tended to overlap with one another showed the lowest levels of satisfaction. In the area of Staff Sensitivity, only 40% of parents or caregivers reported feeling that the staff cared about our whole family, not just our child receiving services. 40% of parent/caregivers did not agree or were unsure if the staff helped our family feel there was hope for improvement for our child. In the area of Staff Communication, only 30% of respondents felt that Staff members pointed out what my child and our family did well. Similarly, adolescents lowest level of satisfaction was in response to a question about Staff Communication, the staff helped my families understand how they could help me the most. None of these questions concern clinical treatment, rather they all involve a concerted effort on the part of staff to reach out to both the families and youth. This pattern, evidenced by the low level of agreement or satisfaction to the questions related to this aspect of treatment, could be significant in the overall feeling of satisfaction with inpatient services and feelings of hope and support that become internalized by families and youth. It is recommended that the hospitals continue to raise staff awareness about these components including how critical they are in providing holistic treatment to the youth and families. Engaging families and youth in any of the above-mentioned conversations requires awareness or sensitivity to the family dynamics and needs. Deliberate communication by the staff must also be sincere, non-judgmental, and convey empathy. Some staff do this innately, while others might find it awkward. Special training of staff, particularly those who have frequent contact with parents during visiting hours, may be needed. If training is part of staff hiring or continuing education procedures, perhaps more can be done to bolster newly learned skills*. Parent/caregiver input in response to open-ended questions addressed several important issues noted in past satisfaction surveys. Parent/caregivers cited that improvements in hospital policy were needed to better accommodate families, such as extending visiting hours. The length of the admissions process continues to be an area of distress for families as well as for the children, already in crisis, who become increasingly agitated during the process. One parent reported being told by the police to take the child to MCES, which turned out to be a Very frightening experience. FEST is aware that changes have been implemented to improve the process for evaluating and admitting youth to inpatient facilities, yet families report not knowing where to go, the wait being too long, and experiences where a bed has not available for their child. Additional outreach and sensitivity training for the police and emergency centers in Montgomery County is recommended. If a child or adolescent is already receiving behavioral health services, the provider should be addressing the steps families should take if symptoms were to escalate to the point of crisis. If families and youth have been given clear instructions and if the provider has *Attitudinal changes of staff at any level may be necessary if they have not learned or do not embrace core beliefs of resiliency/recovery. A body of literature is available which address this issue. (Examples - Deegan, P.E., Recovery, Rehabilitation and the Conspiracy of Hope, 1988 or Rapp, C. A., The Strengths Model, New York: Oxford University Press, 1998) Page7
8 assisted them in creating a crisis plan well in advance of a crisis, families would know whom they should contact and where to go if either mobile crisis services or inpatient hospitalization were to be required. If this is not taking place, perhaps outreach to providers is necessary. FEST made follow-up phone calls to all families around a month after the youth s discharge and, with the exception of phone numbers that did not work, eventually had the opportunity to speak with all parents or caregivers involved in the survey. Roughly half of the families reported ongoing difficulties with their child and need for additional help. FEST referred several families to the PIN (Parents Involved Network) program for assistance in locating services. However, there did not seem to be a direct correspondence between the continuing challenges the family was facing and parent/caregiver satisfaction with inpatient services. In fact, several of these families reported being very satisfied with the inpatient services. Several parents expressed great dissatisfaction as a result of specific incidences in the inpatient facilities; one resulted in a complaint being filed with Magellan. With the exception of self-identifying information, the input provided in their questionnaires was added to the aggregate data. So, although the sample was small and the two hospitals involved and the ages of the youth were not equally matched, the quantitative results were consistent with the general information provided in the interviews. In conclusion, parent/caregivers reported satisfaction in a number of aspects of the areas of Treatment Decisions, Staff Communication, Staff Sensitivity, and Discharge Preparations, as well as with the PBC questions. Among the areas needing the most improvement were staff sensitivity and communication regarding the whole family and the family - child relationship. Parent/caregiver input also showed lower satisfaction in some policy matters, such as being informed about the complaints and grievance process and extending visiting hours to better accommodate families. Although families continued to face challenges once the youth was discharged, most families and adolescents reported improvement in the youth s quality of life as a result of the treatment they had received. Page8
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