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Research & Program Evaluation - Addiction & Mental Health
“Count to ten, take three deep breaths and say I can handle it.” SNAP™ participant. Purpose of the Evaluation St. Leonard’s Community Services has received funding from the Children’s Hospital of Eastern Ontario to evaluate SNAP™. SNAP™ (Stop Now and Plan) is a cognitive tool designed to help children aged 9 to 12 control impulsivity, think about the consequences of their behaviour and develop a socially appropriate plan. Both children and parents are expected to participate in the 8-week program. The goals of the program are to teach effective parenting skills and to expose the parents to SNAP™ by exploring ways to encourage their children’s use of the skills in home and school. In keeping with these goals, the overall purpose of the evaluation is to determine whether the program impacted on the child’s behaviour and the parents’ ability to cope has been maintained. The SNAP™ evaluation explores the following two questions:
Methods The evaluation study employed semi-structured telephone interviews with twenty-three parents who participated in SNAP™ with their children between April 2004 and February 2006. Thirty-six parents were initially contacted. An overview of the evaluation and purpose was provided as well as assurance of confidentiality and that participation was voluntary. Six parents indicated for various reasons that they were not prepared to participate in the interview. Seven parents were not available at the pre-arranged call back time. Professor Timothy Gawley, Wilfrid Laurier University, assisted with the development of the interview questions, interviewer’s script and interviewers’ training. Professor Gawley completed the data coding, and assisted with the literature review and evaluation report. Evaluation ActivitiesMeetings were held late February and early March with Professor Gawley who agreed to assist St. Leonard’s Community Services with the evaluation project. The semi-structured interview questions and scripts were created during the first week of March. The recruitment of interviewers occurred during the second week of March. Seven interviewers were selected and subsequently trained on March 15, 2006. The telephone interviews began March 16, 2006 and were completed March 24, 2006. The data coding began March 21, 2006 and was completed by March 31, 2006. Several meetings were held to review the results, compiling the final report and conducting the literature review occurred during the month of April. Results
Monthly questionnaires administered to parents and children, and semi-structured interviews with parents whose children have participated in the SNAP™ program reveal that overall, the objectives of the program have been achieved. The following findings discuss how the SNAP™ program has contributed to positive behavioural changes in participants between the ages of 9 and 12 and to maximized parenting capacity. Also discussed are recommendations for program improvement. The results are discussed in the context of the program’s expected immediate and intermediate outcomes defined in the program’s logic model. (Appendix A) While the results are organized according to the time sequence implied in the logic model, it is understood that since our research designs are repeated and/or cross-sectional, causation is not implied in this discussion. The semi-structured interview data represents a sample of parents collected at a single point in time and the time period of the respondent’s program participation is unknown. Nevertheless, the results provide evidence of certain characteristics that are qualitatively associated with each of the expected outcomes. (Appendix B)
1. General Program Feedback When asked about their child’s experience with SNAP™, parents commented about how the children enjoyed the program. Three parents suggested that while their child did not warm up to the program initially, they eventually enjoyed the experience. Children were cited to have enjoyed the activities involved in the program such as skits, passport notebooks, videos, and a very popular trip to the police station. This trip was enjoyed by many parents as well; it was regarded as a demonstration of what could happen if their child’s behaviour was not addressed. Parents also shared their praise for the program. Most frequently mentioned was the quality and quantity of information offered to parents. Parents learned a lot about parenting skills and gained a better understanding of the child’s perspectives. When asked what they would tell other parents about SNAP™, the overwhelming majority of parents responded by recommending the program to others, to encourage other parents to try SNAP™ and to “trust the program.” Other comments echoed these sentiments such as “it’s worth doing” and that SNAP™ was a “comfortable program”. Related to this comfort this was one parent who mentioned how the “kids really felt safe.” Parents also praised the learning activities involved in SNAP™. They appreciated hearing new ways of parenting their children through enhanced listening, understanding and communication. The friendliness and inclusiveness of the program staff was also a positive aspect of the program. The program setting and structure were also praised. Comments point to the appreciation for small and open group discussions as well as the bonding opportunities between parents. When asked what the parents thought their children most liked about SNAP™, some unique findings emerged. Some parents commented on how the learning experience itself had a positive impact on the child. For instance, one parent mentions how the promotion of positive reinforcement was received favourably by the child. Another parent noted how the child liked how it was “okay to be angry and that it’s not a bad thing.” While parents bonded, so did the children. The children enjoyed the interaction with other children. In one instance, a parent noted how this interaction enabled the child to feel understood; that the child was not alone in what he/she was going through. A few parents cited particular difficulties with their child’s SNAP™ experience. A number mention that the child didn’t like the classes and that the experience was not positive. Skepticism also ran through these responses with comments such as SNAP™ “would not help the child”. Parents also observed that their children were not suited for the program or that their child didn’t belong there, especially when compared to the observed behaviours and situations of other children in the program. Other difficulties included the child not liking the homework. Conversely, one parent wishes there were more activities for the child. 2. Immediate Outcomes of the SNAP™ Program
2.1. Developing and Improving Self Control; Expressing Feelings Constructively and Stopping and Thinking Prior to Making a Decision Comments from parents in the semi-structured interviews strongly affirm SNAP™’s immediate outcomes. Parents explicitly stated how their child, after participating in SNAP™, “stops and thinks about issues”, “uses SNAP™” or has “learned to calm down.” Children were noted to not “talk back as often”, “won’t react as fast” or were “not as explosive”. Other comments suggest how the ability to work through smaller problems in life was more easily achieved following SNAP™.
2.2. Parents Feel Supported Semi-structured interviews with parents highlight the support received in and from the program. Parents repeatedly mentioned how they no longer “feel alone” as they learned that other parents experienced similar issues. Parents also felt supported with the knowledge that alternative parenting solutions were possible. This support was particularly felt when parents were able to hear stories from other parents. Parents were able to confide in each other and share their thoughts and feelings with other parents. This support was reinforced by the knowledge, friendliness and inclusiveness of the staff. 2.3. Improved Parenting When asked what they felt was learned from being in SNAP™, the most frequent responses indicate changes in parenting activities. Before participation gin SNAP™, several parents mentioned how they did not understand their child or that they did not know how to deal with their child. One parent admitted to a lack of patience. In extreme cases, one parent did not want to come home from work while another didn’t want the child in the home. After SNAP™, parents report changes. One parent stated that there was a heightened “confidence in parenting skills”. One parent highlighted how the parent-child bond strengthened as the family became closer. SNAP™ enabled the family to deal with issues at home. Parents and children are said to understand each other. Parents learned to be proactive in their parenting through skills such as how to listen to the child’s side of the issue (how to listen), having patience or letting the “small stuff go” and how to communicate with the child. One parent learned that “it was normal for children to be defiant”. Other skills or aptitudes learned by the parents included the ability to calm down, not jump to conclusions, and learning the consequences of their actions. More assertive suggestions of improved parenting included the ability to “control [the] child better” and “punishing appropriately [in a] non-violent manner”. Parents also learned preventative steps to quell relational tensions before they emerged. One parent learned to acknowledge good behaviour more often. Another parent was encouraged to look at things in a more positive light. Accepting “that children or parents were not perfect” and learning not to set expectations too high for children were also suggested to have minimized tensions. 3. Intermediate Outcomes of the SNAP™ Program 3.1. Improved Self-efficacy Self-efficacy, or confidence in the ability to transfer training to everyday life, was not easily apparent in the data. Observations that children were able to think or plan before acting in a precarious situation without assistance suggests that self-efficacy has been achieved. However, for a number of children the achievement of self-efficacy was problematic. Several parents note how “not much has changed” or “nothing has changed” in the child’s thinking. Other parents admit the difficulties involved in applying and sustaining SNAP™. For example, one parent comments that while the child stopped and thought “this did not last very long.” Another parent mentions how SNAP™ was tried but “didn’t really work.” Comments such as “for a couple of weeks it worked, but only for a short while” and “tools used well during the program but difficult to sustain once out of the program” further suggest that certain children were not sustaining SNAP™ as well as others.
3.2. Improved Listening Skills The improvement of listening skills was evident for children and parents alike. When asked to describe the relationship with their child before SNAP™, one parent commented how the child wouldn’t listen. After SNAP™, four parents commented about improved listening capacity in their children. Parents also admitted to developing the capacity to listen to their children, highlighted earlier in the improvement of parenting. 3.3. Reduced “Acting Out” Behaviour Before participating in SNAP™, parents reported several instances of acting out by their children. The throwing of objects, yelling, kicking and screaming were common behaviours for some. Anger was also an issue. After SNAP™, parents note positive changes such as no yelling, the calming of a temper or a decrease in bossiness. 3.4. Increased Interest in Pro-Social Activities and Increased Positive Peer Interactions The most frequently mentioned observation by parents about their children relates to enhanced social interaction and inclusion. Before SNAP™, children were observed by parents to have engaged in relatively non- or anti-social behaviour. Physical behaviour toward others, disobedience, dominance, defiance and rebelliousness were all used to describe certain children prior to SNAP™. Actions like skipping school or stealing were also mentioned. Within the family, relationships were described as “tense”, “strained”, “difficult”; “[like] walking on eggshells”. Two parents mention how their children would “talk back.” More extreme was one parent who’s other children in the family felt threatened by the SNAP™ participant. One child was even said to have been abusive toward women. Positive changes in social interaction were witnessed by parents during and after SNAP™. Children were cited to become friendly with the counsellors and enjoyed the social aspects of the program in general. Decreased shyness was observed in one child during SNAP™. Openness was also seen in one child, as SNAP™ was able to “break through his tough exterior.” Following SNAP™, many parents observed positive changes to social activities and peer interaction. Parents comment how law-breaking behaviour and trouble at school ceased. Physical behaviour such as hitting and fighting decreased. One parent also notes how the child has since become a positive role model for other children. One child was observed to be more respectful toward others. Family relationships were also enhanced; one parent described their household as “more harmonious”, more communicative. Another parent described how issues and SNAP™ were discussed at the dinner table while two other parents observe how a child was able to “sit down and talk about what was bothering him”. Suggestions and Future Directions: Strengthening Self-Efficacy Overall, parents shared their praises for SNAP™. The overwhelming majority of comments were positive. One-word comments such as “good”, “wonderful”, “excellent”, “positive” and “perfect” dominated the interviews. Nevertheless, there were parents whose children did not benefit from SNAP™ as well as other children, and these parents offer some possible considerations for the future design and delivery of SNAP™. The only issue that emerged from the data concerns the achievement of self-efficacy. According to the SNAP™ sample, the majority of parents saw the achievement of self-efficacy in their children. Others however offered several suggestions that could enhance self-efficacy for others. Parents suggested that there be more role-playing activities in the program. One parent commented how their son “would have benefited from a more practical use of skills – practice was important of him.” More one-on-one time between children and counsellors was also mentioned. The most common suggestions for improving self-efficacy involved the establishment of pre- and post-program options. Suggestions such as “opportunities for work to be done prior to the program – a one-on-one to lay the foundation for program” and even offering similar programs for younger or older children prior to or after SNAP™ were suggested as the range of maturity among the children in SNAP™ (ages 9-12) was a concern. Comments from parents such as there “should be something for children who were younger – the ages 9-12 was a huge difference – the range of maturity was a bit of an issue”, “would liked to have started program when son was younger” and “helpful to have something in place to help change their [child’s] behaviour before age 9 – it was difficult to change their behaviour at the SNAP™ age” illustrate the demand for either a modification of SNAP™’s target age group or the promotion of related pre- and post-SNAP™ options for younger and older children. Some parents even suggested that SNAP™ be tailored to the unique needs and issues of their children, such as those experienced by early-teens (e.g., dealing with stigmatization). Comments such as “offering counselling after the program was done” and “ongoing communication with the counsellor and parent to know what the child was doing” further promote the demand for ongoing consultation between families and counsellors. The results suggest that the program deliver post-program follow-ups with parents and children to track the program’s progress and to ensure that emerging issues receive more immediate attention. Dr. Timothy Gawley, PhD. Laurier Brantford, Wilfrid Laurier University. Literature ReviewA literature review was conducted and while similarities in treatment modality and approaches were noted (i.e. small groups, short-term, cognitive behavioural-based), the empirical research on similar programs was scarce. For instance, research related to similar program circumstances such as those dealing with anger management were not salient to the activities and outcomes of SNAPTM. Knowledge Exchange Activities The final report and data analysis will be shared with the St. Leonard’s Community Services’ Board of Directors at their May meeting. A copy of the final report will be shared with the Ministry of Children and Youth Services in May. An executive summary of the project will be completed by June and will be made available by request and also available on the Agency website by October. The findings of this study will be shared with St. Leonard’s Community staff via the intranet, peer audits and in-service training sessions beginning in June. The evaluation report and executive summary will be shared with Children’s Mental Health Ontario and will available on the Agency website by October.
Respite Experience St. Leonard’s Community Services in collaboration with Tim Horton Onondaga Farms are offering a respite camp getaway experience for children/youth aged 9 to 15 with mental health and/or behavioural challenges.
“I can go to a movie or to dinner with a friend… Most recently, I went to a workshop I wanted to go to for myself. It was Friday night and all day Saturday. I went and I came home and the house was intact and everyone was intact. I felt relaxed. I came back refreshed… Some people might say it’s a luxury and say it’s not important, but I would challenge them to spend 48 hours giving total care to a special needs child, and then they can see whether it is a luxury or need. It’s very important for us to have that time for ourselves. I really do rest. The anxiety is gone. The stress level is gone. I don’t worry if they’re okay or whether they’re going to have fun. I know they are going to be okay and I know they are going to have fun.” Rachel – single parent Purpose of the EvaluationSt. Leonard’s Community Services has received funding from the Children’s Hospital of Eastern Ontario to evaluate the Respite Experience. The Respite Experience evaluation explores the question; in what ways does participation in the Respite Experience contribute to an overall sense of well-being and improved family relationships for children aged 9 to 15 with mental health problems? In the research literature, a respite is generally defined as a “planned break for the family” (Bruns and Burchard, 2000). This general definition means that many care giving situations have fallen under the respite concept including relief from the care of adults with various mental health issues and the care for more specific terminal illnesses such as cancer or Alzheimer’s disease. The following Respite Experience provides parents of children aged 9 to 15 with mental health/behavioural difficulties and/or dual diagnosis with a 24-hour respite opportunity. The goals of the Respite Experience are:
In keeping with these goals, the overall purpose of the evaluation is to increase knowledge and attempt to determine whether the Respite Experience provides any therapeutic benefit to children and their families. Methods The evaluation study employed open-ended telephone interviews with twenty-four parents whose children/youth participated in the Respite Experience between April 2005 and February 2006. Fifty-four parents were initially contacted, an overview of the evaluation and purpose was provided as well as confidentiality and that participation was voluntary. Twenty- two parents indicated for various reasons that they were not prepared to participate in the interview. Eight parents that indicated they would participate later withdrew their consent or were not available at the pre-arranged call back time. The study also incorporated the monthly feedback from the children/youth and the parents, which were conducted during the same time period. The interview questions and responses can be found in Appendix A. Dr. Timothy Gawley, Laurier Brantford, Wilfrid Laurier University, assisted with the development of the interview questions, interviewer’s script and interviewers training. Dr. Gawley completed the data coding and assisted with the literature review and the evaluation report. Results
Monthly questionnaires administered to parents and children and semi-structured interviews with parents whose children have participated in the Respite Experience reveal that overall, the objectives of the program have been achieved. The following findings discuss how the Respite Experience has contributed to an overall sense of well-being for the children and how the program has enhanced family relationships. Also discussed are reported recommendations for program improvement. The results are discussed in the context of the immediate, intermediate and long-term outcomes defined in the program’s logic model (Appendix B) and supported with a selective literature review of relevant empirical research on similar respite situations. While the results are organized according to the time sequence implied in the logic model, it is understood that since our research designs are repeated and/or cross-sectional, causation is not literally implied in this discussion. We are not necessarily dealing with the same questionnaire samples on a monthly basis, the semi-structured interview data represents a sample of parents collected at a single point in time and the time period of the respondent’s program participation is unknown. Nevertheless, the results provide evidence of certain characteristics that are qualitatively associated with each of the expected outcomes.
1. Immediate Outcomes of the Respite Experience 1.1. Children and Youth Have Fun Children and parents enthusiastically highlighted the fun provided by the various structured recreational, educational and creative activities offered by the Respite Experience. Outdoor activities such as sports, kayaking and canoeing, swimming, archery, climbing, animals, tractor rides, music, and tobogganing and kick-sleds during the winter months were all enjoyed by the children. Indoor activities such as shirt dying, plaster, mask making and other craft activities were met with approval. In particular were several children who took pride in making crafts for their mothers. The activities were also reported by parents to have experiential benefits. One parent commented how the child was able to be “exposed to a new environment and outlook on life.” Similarly, another parent comments that the child was “exposed to activities and surroundings he would never see.” The happiness of children was also apparent following their time at the Respite Experience. Parents observe that their children were happier and often “very talkative” or “more outgoing” with their family following the Respite Experience. Children would immediately share their camp experiences with the family. One child was even reported to “enjoy the days afterwards bragging about the camp.” One parent stated how, on the way back from the camp, the child was “talkative about events, people and food.” The child was “normally not as talkative.” Another parent described a “closed child” who “usually doesn’t talk” but “after camp never stopped talking.” These comments are important since many of the children were not typically social with family or peers. When children returned from the Respite Experience, some unintended emotional consequences did occur. One child was described as “flying high” when returning from the Respite Experience. Another child was described as initially “wrangy” or “hyper.” However these moments of extreme excitement were temporary. Children also could not wait to return to the camp. As one parent stated, the children “can’t wait to go back – they would go back tomorrow if they could.” In the monthly questionnaire administered between April 2005 and February 2006, 123 out of 139 children remarked that they would like to come back to the camp.
1.2. Parents Ability to Relax and Spend Quality Time with each Other and/or Other Children Previous research on similar respite experiences discuss the potential consequences of stressful care giving situations and the relief and wellness that these respite experiences can bring. According to Jivanjee and Simpson (2001), stress associated with the continuing responsibilities and demands of caregiving may result in tiredness, depression and health problems for parents. Studies by Treneman et al., (1997), Hoare et al., (1998), and Stalker and Robinson (1993), found that the principal effects of respite care on care givers are relaxation, stress reduction and a general decrease in family tension (Hartrey and Wells 2003). Caregivers who access respite care report that they are able to gain relief from caregiving responsibilities, take care of important needs and have time for relaxation. When parents have access to respite care, they are able to take time to relax, re-energize and enjoy a break from caregiving (Jinanjee and Simpson 2001). In the interviews, less stress was commonly reported among parents; they were able to “recharge the batteries”. Questionnaire and interview data reveal with intensity how the Respite Experience provided parents with opportunities for relaxation and quality time with family. In particular, parents frequently saw the Respite Experience as an important break from the responsibilities and demands of child care which provided opportunities to “relax and sleep in”, “to get a good night sleep with one eye open”, to be “much more refreshed”, to “become healthy again” or to “give strength to continue parenting.” MacDonald and Callery (2004) report how important it is for parents that their children are safe and well cared for while simultaneously receiving the rest and replenishment needed to continue caring for other children and maintain family relations. Also relaxing for parental respite participants was the knowledge that the children were in a safe and secure place. The camp itself was noted by parents as being very safe and secure, and this safety and security (knowing where their children were and what they were doing). Parents in MacDonald and Callery’s (2004) study identified another dimension of respite: time to be a “normal family”. The feeling of normalcy was derived from their sense of complete freedom – freedom to engage in usual activities without tedious planning, freedom to be spontaneous and freedom from the stigma imposed by their environment. In the results of the semi-structured interviews for the Respite Experience, several parents noted the enhanced mobility or freedom associated with the Respite Experience. In the interviews, two parents emphasized how they were able to go out and have fun. Along with the relaxation, parents were allowed to focus on each other or on other family members. Comments such as “nice to have an evening without the children”, “provides a night to ourselves and a night to be a couple”, “gave parents time for self care” and “provided a chance for us to relax and spend time together” each illustrate how the Respite Experience allowed the parents to spend quality time together. The majority of parents interviewed for a study completed by MacDonald and Callery (2004) stated they would not have been able to maintain the family unit if they had not had respite. A study by Hartrey and Wells (2003) provided the following observation from a mother of an eleven year old boy who has a profound learning disability and exhibits challenging behaviour. “Mary described how her other children have missed out on social activities such as birthday parties and music lessons because of the demands of caring for her child. Social events are easier to organize when he was in respite care because you don’t have to worry about how he would fit in.” The Respite Experience was also reported to enhance relationships between parents and other children. Questionnaire data provided more elaborate statements about these enhanced family interactions. One parent mentioned how there was “more time with the other children and less fighting in the home due to my child’s challenging behaviour.” A similar comment was made by another parent whose three other children were able to receive more attention from the parents while the fourth was attending the camp.
2. Intermediate Outcomes
2.1. Reduced Stress and Improved Ability to Cope with Child’s Behaviour Elaborating on the expectation that the Respite Experience provides opportunities for relaxation, the data suggests how it has enabled parents to reduce their stress and to cope with the child’s behaviour. The responses given by parents during semi-structured interviews are represented by the comment “not so stressed anymore”. The data do not provide overly concrete statements about the improved ability to cope with the child’s behaviour, however numerous parents mentioned how they have developed a better relationship with the child, how they have “learned to deal with the children in an effective way”, how the parents have “gained knowledge about the child’s disabilities”, how the parents have “gained knowledge about the child’s interests” and the child’s “likes and dislikes”. Of note in the Outcome Evaluation Phase I Report completed by the ARCH National Respite Network and Resource Centre indicated that the responses on caregiver stress are promising and indicated that with planned and emergency respite, caregivers experience reduced stress related to the care of their dependant family (ARCH National Respite Network and Resource Centre 2001). They further suggest that if respite were to end, stress levels would be greater than the stress they experienced before respite began. This could be due to the increased needs of the dependant family members as they age or to the caregiver’s fear of loosing a service they have come to depend upon (ARCH National Respite Network and Resource Centre 2001). 2.2. Improved Relationships with Peers In a study conducted of caregivers of children with cerebral palsy indicated that one of the reasons they accessed respite was to provide opportunities to their child for socializing (Damiani, Rosebaum, Swinton and Russell, 2004). The Respite Experience’s location provides a friendly, trustworthy and secure atmosphere that is important for the development of strong and positive social relationships: the camp has enabled children to make new friends and meet “different people.” When asked to describe what they feel has changed about their child since participating in the Respite Experience, the most frequent response among parents was how their children were “more able to interact with other kids” or to be “more social”. Behaviourally, the interviews highlight the general and specific social benefits of the experience for the children. Parents mention how the program has enabled the children to interact with their peer group when they would not normally have the opportunity to do so.
2.3. Improved Self-Esteem Self-esteem development was indicated in several ways. Beyond the direct statements about “increased self-esteem”, among the responses were the noticeable improvements in a child’s independence, a child’s self-mastery over social situations and the enhanced assertiveness (decreased shyness) of the child. Children were also observed to be more respectful and understanding to others suggesting that some children were more secure in the presence others.
2.4. Improvement in Mental-Health and Well-Being Improvements in mental health and well-being were found for both parents and children. Parents benefited from the day of rest and relaxation provided by the Respite Experience. Respite is seen as providing benefits to all members of the family (Webb 1990). Moments of family harmony brought a heightened mental break from the normal demands of family life. Among the statements by parents were how the respite experience “eliminated stress amongst both parents”. Less stress was also evident “due to less fighting amongst siblings.” One parent mentioned how the household is much calmer when the child returns from camp. It was noted in an outcome evaluation conducted by ARCH National Respite Network and Research Centre that the risk of divorce or separation may be reduced by respite care. A significant finding in the questionnaire data is the how mothers in particular benefit from the Respite Experience. Fathers also note stress reductions, however they cite circumstances such as work schedules that negate the impacts of the experience. Fathers bring unique qualities to the parent/child relationship. In addition, a positive father/child relationship enhances the quality of the marital relationship (Lamb, 1983). Both internalizing and externalizing child behaviours were predictors of higher levels of stress for fathers; for mothers, externalizing behaviours were the best predictor of stress (Keller and Honig 2004). Other research identifies the mother as perceiving the physical, emotional and behavioural demands of the child as very stressful (Bailey, Blasco and Simeonsson, 1992; Orr, Cameron, Dobson and Day, 1993). The care and demands of the child contributed to stress experienced by mothers and also had a negative effect on family harmony. (Keller and Honig 2004). Improvements in mental health and well-being were most evident among the mothers. When asked whether the experience has improved you and/or your spouse’s health and well-being, one father stated “yes, very much so for my wife” while another admitted that things were “not as strained”, but for the “mom only”. Mothers were mentioned to have more time to perform other responsibilities associated with the household and/or with other children. Single mothers were especially impacted by the program. In particular was the ability for single mothers to break away from demanding responsibilities and have a “good time.” One of the few controlled studies of the effectiveness of respite care for families with children with emotional and behavioural disorders, families who received an average of twenty-three hours per month of preplanned respite care reported that fewer out of home placements, greater optimism about caring for their child at home and reduced caregiving stress compared with similar families on a waiting list (Bruns and Burchard, 2000). They also reported that according to the families, their children displayed fewer negative behaviours in the community. While the purpose of the Respite Experience was to strengthen the health and well-being of parents, there was evidence in the data to suggest that the health and well-being of children also improved. In one instance, a parent mentioned how the program enabled their child to make the transition to adolescence. Children were also reported to be happier, more relaxed and calm. One parent notes how one child was able to “think better” and react better to problems. 3. Long-term Outcomes 3.1. Improved Family Relationships A review of findings from international studies has shown that formal respite use may decrease both caregiver burden and stress. It may also provide support, enhance coping resources and self-esteem in caregivers and increase family cohesion and adaptation (Rimmerman et al., 1989; Chan and Sigafoos 2001). ). In a study of 215 families of children with developmental disabilities who were both users and nonusers of respite care, reported beneficial outcomes of respite care included improved family functioning, improved satisfaction with life, enhanced capacity to cope with stress and improve attitudes toward the family member with developmental disability (Cohen, 1982; Cohen and Warren, 1985). The semi-structured interview results confirm that behavioural changes in children who have attended the respire experience have contributed to improved family relations. Direct responses like children being “more integrated into the family” and “siblings getting along better” confirmed the enhancement of family relations. Other changes such as honesty and relational changes such as the willingness to listen, becoming more obedient, not fighting back or being less aggressive, pointed to positive family interactions. Children were noted to be more respectful to their parents and others in general. Manners were also said to have improved in one of the children. Other observations included less television watching and the child being more communicative in the family, while one child is reported to become more aware of routines and responsibilities in the home. This echoes previous studies where respite care is observed to promote wellness in parents, enables parents to better care for their children and also provides opportunities for respite providers to model behaviours and teach children new skills (Boothroyd et al., 1998) 4. Exceptions and Future Directions
4.1. General Comments While there is an overwhelming consensus among parents and children about the merits and value of the Respite Experience, it is important to recognize certain exceptions and the reasons for them. For several respondents, the experience produced no changes to their child, parent or family circumstances. For most of these, the family’s participation in the experience was simply quite new, and the immediate outcomes of the experience were not yet evident. Other reasons included the discovery that child behaviours were medically treatable (e.g., a child who was recently diagnosed with ADHD and prescribed medication). In the questionnaire data, there were instances of bullying suggested by one parent while another suggested that child supervision be enhanced at the camp. Safety was also an issue for some parents whose children experienced some unique accidents during the experience. Without minimizing the importance of these experiences, the overwhelming consensus about the camp was that it continues to provide an extremely welcoming, friendly, safe and secure environment for children. For instance, three parents whose children require medications during the experience were praiseworthy of the way in which medications were monitored and given to children in their proper manner. 4.2. Intake and Information Efficiency An issue worth considering for the future includes the reported tediousness of the Respite application process. One parent wished that the Respite Experience was more easily accessible in so far as the parent believed that there was too much paperwork. One parent commented on the length of waiting periods while another noted the length of interview periods. Seemingly contrary to these comments are parents who suggested that more detailed information could be shared about the Respite Experience. Suggestions included the provision of camp program schedules so that parents were able to know what activities the children were participating in. Another parent suggested that more information could be provided about how “difficult situations” are handled at the camp. Another parent recommended that dietary information be provided. Finally, one parent suggested that they be able to “check out” the site themselves prior to the program. The comments suggest a demand for a more efficient dissemination of more information. It is known that the intake function is performed by another agency while St. Leonard’s Community Services operated the Respite Experience. The comments of these parents suggest that intake activities be integrated into St. Leonard’s Community Services’ activities so as to minimize the communication and information sharing (and potential duplication) required by parents. This would permit the parents to deal with a single agency, particularly in satisfying the demand that they and their children be informed about the many aspects of the Respite Experience prior to their participation. 4.3. “A Longer Stay Would Be Nice”: Lengthening the Respite Experience When asked what could be improved about the Respite Experience, parents and children overwhelmingly responded with “longer.” This suggestion ranges from an extra day, to an entire weekend or to the establishment of week-long summer experiences. Suggestions by children included “we get to stay longer”, “stay for 3 days to do more things”, “to stay longer because it was fun” and “spend more time at camp”. More specific were their desires to accomplish more of the activities offered at the camp. Parents echoed the desires for a longer experience for several reasons, with many implying the enhancement of immediate, intermediate and long-term program outcomes. These reasons were also balanced as they considered the needs of the parent and child. Greater use of respite services has been associated with more positive outcomes, pointing to the need to increase the intensity of respite services to impact such outcomes (Bruns and Burchard 2000). One parent suggested that “not all activities were accomplished” and that the child “would like longer time away in order for him to be more settled”. Another parent suggested that “longer stays would be great. By the time you get them [the children] ready and out to the camp, they don’t have a lot of time because they have to leave the next day”. One parent stated that the child should “spend longer at the camp; it confuses him a little being there for such a short period of time”. Another parent suggested that a longer stay would “be beneficial to relieve stress in the home.” Another said that a longer stay for the children would give the parents and children “a real break from one another.” Finally, one parent wished for a longer experience “so I would have more time to work and complete tasks needed to be done at home.”
5.0. Conclusion The purpose of this evaluation has been to contribute knowledge about the Respite Experience and has attempted to determine whether the Respite Experience provides any therapeutic benefit to children and their families. With the main goals and outcomes (immediate, intermediate and long term) of the experience in mind, the employment of semi-structured interviews for a sample of parents whose children have participated in this Respite Experience revealed that these goals and outcomes have been accomplished. Interview findings have been validated further by a selection of empirical literature on similar respite programs. The Respite Experience has been beneficial to children and parents. The experience has provided and fun and joyful experience for children. The camp’s scenery and facilities have offered a safe and secure space that is bountiful with diverse activities and experiences. Children have been found to socially benefit from the Respite Experience, evidenced by children who became enthusiastically talkative and more social with parents and peers alike. Parents have been given the opportunities to relax, reduce stress and provide self-care for their mental and physical health. Parents have also been able to enjoy more flexibility and the freedom to participate in activities outside of the family or home. While these observations were seen among mothers and fathers, the Respite Experience was particularly beneficial for mothers and single parents. Where tensions between family members have been abated for a period time by the respite, parents have been able to focus more attention on other family members, hence strengthening the quality of family relations. The Respite Experience has improved the quality of parenting. The break experienced by the families has opened communication between parents and children. This communication has subsequently enhanced the parents’ understanding of their child’s perspectives, which has enabled parents to approach parenting issues differently. Despite these positive program outcomes, this evaluation offers suggestions for future consideration such as improvements to the intake process and to the distribution of information to parents. The most assertive suggestions by parents and children however concern the length and frequency of the Respite Experience. Parents and children sincerely believe that the quality of expected outcomes would be enhanced if the experience was lengthened by one day or increased in frequency. Given more resources, the Respite Experience could provide present and future respite participants with a more qualitatively effective program. Further, with additional research assistance and resources for more rigorous research designs (such as comparative designs using focus groups), future evaluations of the Respite Experience could provide thicker descriptions of the positive impacts and suggestions for improvement provided here. Dr. Timothy Gawley, PhD Laurier Brantford, Wilfrid Laurier University. Knowledge Exchange ActivitiesThe final report and data analysis will be shared with the St. Leonard’s Community Services’ Board of Directors at their May meeting. A copy of the final report will be shared with the Ministry of Children and Youth Services in May. An executive summary will be completed by June and will be made available by request and also available on the Agency website by October. The findings of this evaluation will be shared with St. Leonard’s Community Services staff via the intranet, peer audits and in-service training sessions beginning in June. The evaluation report and executive summary will be shared with Children’s Mental Health Ontario by October 2006.
Sources
Aniol, K., Mullins, L., Page, M., Boyd, M., and Chaney, J (2004). “The Relationship Between Respite Care and Child Abuse Potential in Parents of Children With Developmental Disabilities: A Preliminary Report.” Journal of Developmental and Physical Disabilities. 16 (3): 274-285. ARCH National Respite Network and Resource Centre. (2001). “Outcome Evaluation Phase 1 Report – A Report for Field Participants.” 1-46. ARCH National Respite Network and Resource Centre (2003). “Outcome Evaluation Phase II Results – A Summary Report.” 1-8. Boothroyd, R.A., Kuppinger, A.D., Evans, M.E. and Radigan, M. (1998). R. Et al. (1998). “Understanding respite care by families receiving short-term psychiatric emergency services.” Journal of Child and Family Studies, 7(3): 353-376. Brown, J., Moraes, S. and Mayhew J. (2005). “Service Needs of Foster Families with Children who have Disabilities.” Journal of Child and Family Studies. 14(3): 417-429 Bruns, E. and Burchard, J. (2000). “Impact of Respite Care Services for Families With Children Experiencing Emotional and Behavioural Problems.” Children’s Services: Public Policy, Research and Practice. 3(1): 39-61 Cowen, P. and Reed, D. (2002). “ Effects of Respite Care for Children with Developmental Disabilities: Evaluation of an Intervention for At Risk Families.” Public Health Nursing. 19(4): 272-283. Craft, A. (2004). “Children with complex health care needs – supporting the child and family in the community.” Child Care, Health and Development. 30(3): 193-194. Franck, L. (2004). “Commentary on ‘Different meaning of respite: a study of parents, nurses and social workers caring for children with complex needs’ by MacDonald and Callery.” British Journal of Learning Disabilities. 31, 91-95. Hartrey, L. and Wells, J. (2003). “The meaning of respite care to mothers of children with learning disabilities: two Irish case studies.” Journal of Psychiatric and Mental Health Nursing 10, 335-342. Jivanjee, P. and Simpson, J. (2001). “Respite Care for Children with Serious Emotional Disorders and Their Families: A Way to Enrich Family Life.” Regional Research Institute for Human Services, Portland University. 1-7. Jivanjee, P., Simpson, J. and Garcia-Gettman, M. (2002). “Respite Care for Families with Children with Serious Emotional Disorders: Promising Practices in Systems of Care.” Building on Family Strengths 107-110. Keller, D. and Honig, A. (2004). “Maternal and Paternal Stress in Families With School-Aged Children With Disabilities.” American Journal of Orthopsychiatry. 74(3): 337-348. MacDonald, H. and Callery, P. (2004). “Different meanings of respite: a study of parents, nurses and social workers caring for children with complex needs.” Child Care, Health and Development. 30. 77-86. National Respite Coalition, (2000). Factsheet 7. Webb, S. and Aldgate, J. (1991). “Using respite to prevent long-term family breakdown.” Adoption and Fostering, 15(1): 6-13
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