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This Concept Map, created with IHMC CmapTools, has information related to: Quality of Life, Key Problem #1 Impaired Psychosocial Functioning Data: Stigma of heart disease Feelings of unfairness Societal judgment Feeling different from peers Treated differently by peers Less social relationships Missing activities due to disease Short-Term Goal: Increased social participation Intermediate Goal: Improved understanding of disease by peers and others Long-Term Goal: Overall improvement in feelings of confidence, self-esteem, and belonging Interventions: -Determine patient's primary reasons for lack of participation -Education on importance of positive social interactions, especially during adolescence -Encourage parent/family to give patient independent social time, and choices of social activities -Encouragement in social participation in enjoyable activities -Provide school and community education to improve understanding by peers and others -Provide resources for support, including groups for children and adolescents with heart disease (Shearer, Rempel, Norris, & Magill-Evans, 2013; Uzark, et al., 2008) Potentially impacts Key Problem #2 Impaired Physical Activity Functioning Data: Occasional exercise intolerance Need for frequent rest periods Unrealistic restrictions by parents Feelings of exclusion Limitations created by those who lead physical activities e.g. coaches, teachers, trainers, etc. Short-Term Goal: Identify tolerance-appropriate physical activity that interests patient Intermediate Goal: Parental support of physical activity Long-Term Goal: Active involvement in appropriate, patient-chosen physical activity Interventions: -Determine parental reasoning for restrictions -Educate parents and patient on actual restrictions relative to patient's health condition -Provide options for physical activities within scope of patient's ability -Educate coaches, teachers, etc. about patient's abilities and needs when participating in activity (Anderson, Czosek, Knilans, & Marino, 2012; Marino, et al., 2009; Uzark, et al., 2008), Key Problem #3 Lower School Functioning Data: Inaccurate assumption of decreased learning abilities by undereducated school staff Missing school due to medical appointments Potential neurodevelopmental needs not yet identified Feelings of failing at school expressed by patient Short-Term Goal: Identification of any and all unmet neurodevelopment needs by cardiology neurodevelopment clinic Intermediate Goal: Increased knowledge of school staff regarding patient's condition and learning abilities Long-Term Goal: Improved school functioning and expressed feelings of success by patient Interventions: -Facilitate evaluation of patient by cardiology neurodevelopment clinic -Provide educational materials and/or education sessions to school staff, encourage school nurse to continue education regularly -Provide resources for improved school performance, including online resources, tutoring services, public school resources. -Provide patient and parents with methods for acquiring and completing school work missed due to appointments (Shearer, et al., 2013; Uzark, et al., 2008) Potentially impacts Key Problem #4 Increased Fear and Anxiety Data: Pacemaker-dependency due to underlying atrial arrhythmia Overprotective behavior of parents and other caregivers Increasing awareness with age by patient of potential complications, future surgeries, risks of co-morbidities Development by patient of sense of mortality Short-Term Goal: Identification of psychological condition in need of further treatment Intermediate Goal: Increased understanding by parents and caregivers of potential detriment related to overprotection Long-Term Goal: Decreased fear and anxiety as expressed by patient Interventions: -Assessment of patient's current psychological state, with further involvement by other clinicians if necessary -Provide education to families and caregivers regarding positive behaviors, management of own anxiety, healthy versus detrimental ways for expressing concern -Provide patient and parents with additional resources, including psychological support services, social work services, holistic health services, pastoral care services -Provide patient with personal anxiety management tools, such as meditation, journaling, relaxation techniques, use of music as therapy (Shearer, et al., 2013; Uzark, et al., 2008), Health Care Need: Management of Decreased Quality of Life in Children with Chronic Congenital or Acquired Heart Disease Medical Diagnosis: 14 year old female patient with history of (h/o) Tetrology of Fallot (TOF), status post (s/p) repair at 5 months of age; Post-operative complication of atrial arrhythmias, s/p permanent pacemaker insertion at 6 months of age Key Assessments: Impaired psychosocial functioning, Impaired physicial activity functioning, lower school performance, increased fear and anxiety Potential for Key Problem #4 Increased Fear and Anxiety Data: Pacemaker-dependency due to underlying atrial arrhythmia Overprotective behavior of parents and other caregivers Increasing awareness with age by patient of potential complications, future surgeries, risks of co-morbidities Development by patient of sense of mortality Short-Term Goal: Identification of psychological condition in need of further treatment Intermediate Goal: Increased understanding by parents and caregivers of potential detriment related to overprotection Long-Term Goal: Decreased fear and anxiety as expressed by patient Interventions: -Assessment of patient's current psychological state, with further involvement by other clinicians if necessary -Provide education to families and caregivers regarding positive behaviors, management of own anxiety, healthy versus detrimental ways for expressing concern -Provide patient and parents with additional resources, including psychological support services, social work services, holistic health services, pastoral care services -Provide patient with personal anxiety management tools, such as meditation, journaling, relaxation techniques, use of music as therapy (Shearer, et al., 2013; Uzark, et al., 2008), Health Care Need: Management of Decreased Quality of Life in Children with Chronic Congenital or Acquired Heart Disease Medical Diagnosis: 14 year old female patient with history of (h/o) Tetrology of Fallot (TOF), status post (s/p) repair at 5 months of age; Post-operative complication of atrial arrhythmias, s/p permanent pacemaker insertion at 6 months of age Key Assessments: Impaired psychosocial functioning, Impaired physicial activity functioning, lower school performance, increased fear and anxiety Potential for Key Problem #2 Impaired Physical Activity Functioning Data: Occasional exercise intolerance Need for frequent rest periods Unrealistic restrictions by parents Feelings of exclusion Limitations created by those who lead physical activities e.g. coaches, teachers, trainers, etc. Short-Term Goal: Identify tolerance-appropriate physical activity that interests patient Intermediate Goal: Parental support of physical activity Long-Term Goal: Active involvement in appropriate, patient-chosen physical activity Interventions: -Determine parental reasoning for restrictions -Educate parents and patient on actual restrictions relative to patient's health condition -Provide options for physical activities within scope of patient's ability -Educate coaches, teachers, etc. about patient's abilities and needs when participating in activity (Anderson, Czosek, Knilans, & Marino, 2012; Marino, et al., 2009; Uzark, et al., 2008), Key Problem #2 Impaired Physical Activity Functioning Data: Occasional exercise intolerance Need for frequent rest periods Unrealistic restrictions by parents Feelings of exclusion Limitations created by those who lead physical activities e.g. coaches, teachers, trainers, etc. Short-Term Goal: Identify tolerance-appropriate physical activity that interests patient Intermediate Goal: Parental support of physical activity Long-Term Goal: Active involvement in appropriate, patient-chosen physical activity Interventions: -Determine parental reasoning for restrictions -Educate parents and patient on actual restrictions relative to patient's health condition -Provide options for physical activities within scope of patient's ability -Educate coaches, teachers, etc. about patient's abilities and needs when participating in activity (Anderson, Czosek, Knilans, & Marino, 2012; Marino, et al., 2009; Uzark, et al., 2008) Potentially impacts Key Problem #3 Lower School Functioning Data: Inaccurate assumption of decreased learning abilities by undereducated school staff Missing school due to medical appointments Potential neurodevelopmental needs not yet identified Feelings of failing at school expressed by patient Short-Term Goal: Identification of any and all unmet neurodevelopment needs by cardiology neurodevelopment clinic Intermediate Goal: Increased knowledge of school staff regarding patient's condition and learning abilities Long-Term Goal: Improved school functioning and expressed feelings of success by patient Interventions: -Facilitate evaluation of patient by cardiology neurodevelopment clinic -Provide educational materials and/or education sessions to school staff, encourage school nurse to continue education regularly -Provide resources for improved school performance, including online resources, tutoring services, public school resources. -Provide patient and parents with methods for acquiring and completing school work missed due to appointments (Shearer, et al., 2013; Uzark, et al., 2008), Health Care Need: Management of Decreased Quality of Life in Children with Chronic Congenital or Acquired Heart Disease Medical Diagnosis: 14 year old female patient with history of (h/o) Tetrology of Fallot (TOF), status post (s/p) repair at 5 months of age; Post-operative complication of atrial arrhythmias, s/p permanent pacemaker insertion at 6 months of age Key Assessments: Impaired psychosocial functioning, Impaired physicial activity functioning, lower school performance, increased fear and anxiety Potential for Key Problem #1 Impaired Psychosocial Functioning Data: Stigma of heart disease Feelings of unfairness Societal judgment Feeling different from peers Treated differently by peers Less social relationships Missing activities due to disease Short-Term Goal: Increased social participation Intermediate Goal: Improved understanding of disease by peers and others Long-Term Goal: Overall improvement in feelings of confidence, self-esteem, and belonging Interventions: -Determine patient's primary reasons for lack of participation -Education on importance of positive social interactions, especially during adolescence -Encourage parent/family to give patient independent social time, and choices of social activities -Encouragement in social participation in enjoyable activities -Provide school and community education to improve understanding by peers and others -Provide resources for support, including groups for children and adolescents with heart disease (Shearer, Rempel, Norris, & Magill-Evans, 2013; Uzark, et al., 2008), Focus Question: What are the management strategies for decreased quality of life in children with chronic congenital or acquired heart disease? Leads to Health Care Need: Management of Decreased Quality of Life in Children with Chronic Congenital or Acquired Heart Disease Medical Diagnosis: 14 year old female patient with history of (h/o) Tetrology of Fallot (TOF), status post (s/p) repair at 5 months of age; Post-operative complication of atrial arrhythmias, s/p permanent pacemaker insertion at 6 months of age Key Assessments: Impaired psychosocial functioning, Impaired physicial activity functioning, lower school performance, increased fear and anxiety, Key Problem #4 Increased Fear and Anxiety Data: Pacemaker-dependency due to underlying atrial arrhythmia Overprotective behavior of parents and other caregivers Increasing awareness with age by patient of potential complications, future surgeries, risks of co-morbidities Development by patient of sense of mortality Short-Term Goal: Identification of psychological condition in need of further treatment Intermediate Goal: Increased understanding by parents and caregivers of potential detriment related to overprotection Long-Term Goal: Decreased fear and anxiety as expressed by patient Interventions: -Assessment of patient's current psychological state, with further involvement by other clinicians if necessary -Provide education to families and caregivers regarding positive behaviors, management of own anxiety, healthy versus detrimental ways for expressing concern -Provide patient and parents with additional resources, including psychological support services, social work services, holistic health services, pastoral care services -Provide patient with personal anxiety management tools, such as meditation, journaling, relaxation techniques, use of music as therapy (Shearer, et al., 2013; Uzark, et al., 2008) Potentially impacts Key Problem #1 Impaired Psychosocial Functioning Data: Stigma of heart disease Feelings of unfairness Societal judgment Feeling different from peers Treated differently by peers Less social relationships Missing activities due to disease Short-Term Goal: Increased social participation Intermediate Goal: Improved understanding of disease by peers and others Long-Term Goal: Overall improvement in feelings of confidence, self-esteem, and belonging Interventions: -Determine patient's primary reasons for lack of participation -Education on importance of positive social interactions, especially during adolescence -Encourage parent/family to give patient independent social time, and choices of social activities -Encouragement in social participation in enjoyable activities -Provide school and community education to improve understanding by peers and others -Provide resources for support, including groups for children and adolescents with heart disease (Shearer, Rempel, Norris, & Magill-Evans, 2013; Uzark, et al., 2008), Health Care Need: Management of Decreased Quality of Life in Children with Chronic Congenital or Acquired Heart Disease Medical Diagnosis: 14 year old female patient with history of (h/o) Tetrology of Fallot (TOF), status post (s/p) repair at 5 months of age; Post-operative complication of atrial arrhythmias, s/p permanent pacemaker insertion at 6 months of age Key Assessments: Impaired psychosocial functioning, Impaired physicial activity functioning, lower school performance, increased fear and anxiety Potential for Key Problem #3 Lower School Functioning Data: Inaccurate assumption of decreased learning abilities by undereducated school staff Missing school due to medical appointments Potential neurodevelopmental needs not yet identified Feelings of failing at school expressed by patient Short-Term Goal: Identification of any and all unmet neurodevelopment needs by cardiology neurodevelopment clinic Intermediate Goal: Increased knowledge of school staff regarding patient's condition and learning abilities Long-Term Goal: Improved school functioning and expressed feelings of success by patient Interventions: -Facilitate evaluation of patient by cardiology neurodevelopment clinic -Provide educational materials and/or education sessions to school staff, encourage school nurse to continue education regularly -Provide resources for improved school performance, including online resources, tutoring services, public school resources. -Provide patient and parents with methods for acquiring and completing school work missed due to appointments (Shearer, et al., 2013; Uzark, et al., 2008)