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Parental experience of participation in physical therapy for children with physical disabilities
... Many studies have shown that despite the positive effects of maintaining operating results, children with disabilities are at risk of poor program compliance. This problem is particularly relevant in children with long-term problems (Galil et al., 2001;Jansen et al., 2003). ...
... These risk factors may compound the pain observed during the procedures recommended by (Swiggum et al., 2010). Parental compliance with children having CP in treatment is essential and can play an important role in the child's course (Galil et al., 2001;Jansen et al., 2003). Failure to comply with treatment can lead to serious consequences, which can lead to serious disability, increased visits to the doctor, additional diagnostic tests, additional alternative or unnecessary therapies, storage of medicines at home, and increased health costs. ...
... Lillo Navarro et al. (2015) reported that the presence of pain during exercise plays a critical role in executing and adhering to a child's home exercise program. In their research report, Jansen et al. (2003) stated that more and more attention is being paid to parental involvement today. In the past, physical therapy was mainly focused on impairment, with the supposed effects on the child's daily functioning. ...
Tel: +306942222445 Cerebral palsy (CP) is a disruption of the body's motor functions due to poor development of the motor areas of the brain that regulate, control and coordinate movements to maintain a smooth and synchronized posture and movement of the body. This central disability is usually accompanied by other disorders such as epilepsy, speech deficits, hearing challenges, vision impairment and intellectual disability. The goals of the physiotherapy program are the pursuit of normal muscle tone, movement, the appropriate stimulus to help the child move, promoting orientation and balance reactions. The prevention of deformities is very important and children with CP should be trained in posture and walking. The purpose of the present study was to investigate the compliance of parents in home physiotherapy with infants/toddlers diagnosed with CP. The study involved 63 parents, with toddlers aged 1 to 6 years diagnosed with CP. A special questionnaire was used as a measurement tool, completed by parents of children with CP. The questionnaires were collected through personal interviews, face to face during the period April-September 2019 and descriptive statistics and correlation analysis were performed. Based on a previous investigation, it was found that the percentage of parents who comply is 40%. The reasons for their compliance depend mainly on the program. In the view of the parents involved in our study, for a home treatment program to be applicable it should include simple, comprehensible, fun exercises adapted to daily activities. According to the findings of this study, it has been suggested that Physiotherapists should develop effective teaching techniques, in order to get parents more involved in the home exercise program. Creating a parent-physiotherapist confidence plays an important role.
... 41,45 It has been suggested that parents may vary in their willingness and/or capacity to assume the role of 'co-therapist'. [48][49][50][51] Notions of feeling overburdened by the requirements of a therapy regime, and a lack of ongoing training and support, have also been reported. 52 In terms of work within the existing NIHR portfolio, a study 47 funded as part of the Research for Patient Benefit programme has been recently published, which evaluated a training intervention for parents and school staff on postural management. ...
... Included in the stories they relayed were themes of guilt, conflict, exhaustion and a sense of working in isolation, all of which have been reported in previous studies. 48,52 In addition, they expressed concerns about the way therapies intruded into their child's life and prevented the child from doing other activities. They also described their children's responses to receiving therapy. ...
... Certainly some of these outcomes map well on to other research, referred to earlier in this discussion, which has explored parents' experiences of delivering therapy interventions. 41,48,52 Objective 8: evidence gaps and issues of study design Objective 8 was: ...
Background
Therapy interventions emerged four times in the top 10 research priorities in a James Lind Alliance research prioritisation exercise for children with neurodisabilities (Morris C, Simkiss D, Busk M, Morris M, Allard A, Denness J, et al. Setting research priorities to improve the health of children and young people with neurodisability: a British Academy of Childhood Disability-James Lind Alliance Research Priority Setting Partnership. BMJ Open 2015; 5 :e006233). The National Institute for Health Research (NIHR) commissioned this study as part of an information-gathering exercise in response to this.
Objectives
The objectives were to (1) describe the current practice, approaches and schools of thought in relation to physiotherapy, occupational therapy and speech and language therapy for children with neurodisability; (2) explore clinical decision-making; (3) investigate views on outcomes and their measurement, particularly participation as an outcome, that is, the child’s ability to have the opportunity to be involved in life situations and activities (e.g. communication, mobility, interpersonal interactions, self-care, learning and applying knowledge); (4) seek views on the aspects of therapy interventions that have an impact on outcomes; and (5) elicit stakeholder views on research needs and priorities.
Design, setting and participants
More than 70 professionals (therapists, service leads, paediatricians and education staff) and 25 parents participated in a qualitative interview (either individually or as part of a focus group).
Results
Professional thinking and models of service delivery are in a state of flux and development. There is a move towards goals-focused, family-centred approaches. Work tends to be highly individualised, with few protocols. Parents are certain of the value of therapies, although they may experience difficulties with provision and may seek (additional) private provision. Therapy interventions are conceived as three components: the therapist, the procedures/equipment, etc., and the wider therapeutic environment. They are believed to be highly complex and poorly understood. Although participation is widely endorsed as a core intervention objective of therapy interventions, its suitability, or appropriateness, as an outcome measure was questioned. Other child and/or parent outcomes were identified as more or equally important. Notions of intermediate outcomes – in terms of body structure/function, and the achievement of activities – were regarded as important and not counter to participation-focused approaches. Among therapists, research on intervention effectiveness was (cautiously) welcomed. A number of methodological challenges were identified. A portfolio of study designs – quantitative and qualitative, experimental and observational – was called for, and which included economic evaluation and clear pathways to impact.
Limitations
The study was not successful in recruiting children and young people. Further work is required to elucidate the views of this key stakeholder group.
Conclusions
Therapy interventions are poorly understood. There was strong support, tempered a little by concerns among some about the feasibility of demonstrating impact, for investment in research.
Future work
The identification of research priorities was a core study objective, and a wide-ranging research agenda was identified. It included ‘foundational’ research into neurodisability, the active components of therapy interventions and the concept of participation. Three areas of evaluation were identified: overall approaches to therapy, service organisation and delivery issues, and the evaluation of specific techniques. Parents regarded evaluations of approaches to therapy (e.g. goals-focused; supporting family-self management) as priorities, along with evaluations of models of service provision. Professionals’ views were broadly similar, with an additional emphasis on methodological research. In terms of specific techniques, there was no shared agreement regarding priorities, with views informed by personal interests and experiences.
Funding
The NIHR Health Technology Assessment programme.
... The issue of parental involvement in the intervention program or therapy can be a source of confusion for practitioners as well as a source of tension for parents (e.g., Jansen, Ketelaar & Vermeer, 2003;Ketelaar, Vermeer, Helders & Hart, 1998;Thompson, 1998). ...
... These two different forms of parental involvement can have profoundly different effects on parents. Reviews of the literature on the effects of parental involvement in intervention programs for children with cerebral palsy have been conducted by Ketelaar, Vermeer, Helders and Hart (1998) and Jansen, Ketelaar and Vermeer (2003). Ketelaar et al. reviewed studies that examined the effects on the children of parental involvement in therapy. ...
... In a subsequent research review by the same team, Jansen, Ketelaar and Vermeer (2003) examined studies of the effects on parents themselves of participation in physical therapy for their children with physical disabilities. They suggested that there are two main arguments for involving parents in the physical therapy of their children: ...
... Occupational therapy in children with cerebral palsy is done to prevent muscle tissue stiffness, treating muscle disorders and reducing motor and sensory deficits of their body [3]. Currently, several methods used to treat children with cerebral palsy that show hopefully effects in improving motion center and physical and application activities, that in this regard, treatment of neural development method [7] and method of sensory-motor integration therapy [8] pioneered in serving and treatment of PC children in the field of occupational therapy [9]. ...
... Research showed that the maximum amount of Energy consumption for walking on a treadmill in children with spastic is three times of the normal children [11,12]. Some researches also showed that exercise and physical therapy and rehabilitation in a clinical-physical course, leads to improvement in physical and physiological parameters [13]. it can be effective on the secretion of endocrine hormones [14], and also it can be effective for these patients [9]. ...
... Exercise therapy Energy consumption and metabolic effects in children with spastic CP Jansen and colleagues investigated the involvement of parents of children with CP when therapy and showed that if children who have no ability to have a physical or mental disability do occupational therapy by their parent could make better progress in their daily performance [9]. Due to the discrepancy in the results of the investigation into the effectiveness of exercise therapy on children with CP, it seems that conducting a previous authors' opinions method of making a real impact of physical therapy help to children with spastic cerebral palsy and the effectiveness of exercise therapy on reducing children with spastic cerebral palsy will be determined. ...
... Occupational therapy in children with cerebral palsy is done to prevent muscle tissue stiffness, treating muscle disorders and reducing motor and sensory deficits of their body [3]. Currently, several methods used to treat children with cerebral palsy that show hopefully effects in improving motion center and physical and application activities, that in this regard, treatment of neural development method [7] and method of sensory-motor integration therapy [8] pioneered in serving and treatment of PC children in the field of occupational therapy [9]. ...
... Research showed that the maximum amount of Energy consumption for walking on a treadmill in children with spastic is three times of the normal children [11,12]. Some researches also showed that exercise and physical therapy and rehabilitation in a clinical-physical course, leads to improvement in physical and physiological parameters [13]. it can be effective on the secretion of endocrine hormones [14], and also it can be effective for these patients [9]. ...
... Exercise therapy Energy consumption and metabolic effects in children with spastic CP Jansen and colleagues investigated the involvement of parents of children with CP when therapy and showed that if children who have no ability to have a physical or mental disability do occupational therapy by their parent could make better progress in their daily performance [9]. Due to the discrepancy in the results of the investigation into the effectiveness of exercise therapy on children with CP, it seems that conducting a previous authors' opinions method of making a real impact of physical therapy help to children with spastic cerebral palsy and the effectiveness of exercise therapy on reducing children with spastic cerebral palsy will be determined. ...
After so many years devoted to practicing medicine as children physiotherapists, the therapists finally found the importance of balance training exercises in children who suffer from cerebral palsy. It is only through controlling balance that we can achieve improvement in body movement and position that will culminate into performance independence in a child. Formerly, working over controlling balance in cerebral palsy children has been very difficult, because contracture and spasticity did not let us to have an effective balance training exercise. In this respect, we have summarized the results of previous authors that specify the level of effectiveness of exercise therapy. The results of different studies showed that level of effectiveness of exercise therapy on alleviating the symptoms of spastic cerebral palsy is average in accordance with Cohen's effect size Interpretation table.
... Family-centered therapy (FCT) is the involvement of parents and family members in the identification of the child's impairments and developmental milestones, as well as collaboratively developing an intervention plan with the physical or occupational therapist. [1][2][3][4][5] The intervention plan would involve ideas or strategies that would fit with the values and aspirations of the parents or family with and for their child, because it is this that distinguishes FCT from other intervention approaches. Previously developed treatments of pediatric disorders have been purely orthopedic or through Neurodevelopment treatment (NDT). 1 There has been inconclusive evidence to support the effectiveness of NDT for long-term functional outcomes for children with cerebral palsy, which has led many current therapists to investigate other ways to approach therapy for this population. ...
... 3 Other aspects of investigation have included parental outcomes of well-being, satisfaction, reduced stress, and program adherence. 4,5 One systematic review has recommended parental well-being in order to optimize outcomes for both parents and children. 5 The goal of this inquiry was to identify the effect of FCT on family satisfaction and functional outcomes in children with congenital or acquired disorders when used with physical or occupational therapy. ...
... 4,5 One systematic review has recommended parental well-being in order to optimize outcomes for both parents and children. 5 The goal of this inquiry was to identify the effect of FCT on family satisfaction and functional outcomes in children with congenital or acquired disorders when used with physical or occupational therapy. The purpose of this study was to bridge the information gap in the current literature of family-centered therapy. ...
Background: There has been inconclusive evidence to support the effectiveness of neurodevelopment treatment for long-term functional outcomes for children with cerebral palsy, which has led many current therapists to investigate other ways to approach therapy for this population.Objective: To review the literature to identify the effect of family-centered therapy (FCT) on family satisfaction and functional outcomes in children with congenital or acquired disorders when used with physical or occupational therapy.Methods: The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed for this review. Electronic and hand searches were conducted in PubMed, CINAHL, Academic Search Complete, Academic Search Premier, SPORTDiscus, and Psychology and Behavioral Sciences Collection. To be considered for review, the study required: (1) participants between the ages of 18 months through 12 years receiving physical or occupational therapy; (2) use of outcome assessment tools; a...
... The issue of parental involvement in the intervention program or therapy can be a source of confusion for practitioners as well as a source of tension for parents (e.g., Jansen, Ketelaar & Vermeer, 2003;Ketelaar, Vermeer, Helders & Hart, 1998;Thompson, 1998). ...
... These two different forms of parental involvement can have profoundly different effects on parents. Reviews of the literature on the effects of parental involvement in intervention programs for children with cerebral palsy have been conducted by Ketelaar, Vermeer, Helders and Hart (1998) and Jansen, Ketelaar and Vermeer (2003). Ketelaar et al. reviewed studies that examined the effects on the children of parental involvement in therapy. ...
... In a subsequent research review by the same team, Jansen, Ketelaar and Vermeer (2003) examined studies of the effects on parents themselves of participation in physical therapy for their children with physical disabilities. They suggested that there are two main arguments for involving parents in the physical therapy of their children: ...
... In these service delivery models, there is an assumption that client and parent engagement are central to effective practice and the attainment of positive, valued outcomes [4]. Positive child and family outcomes have been found to be associated with parents' participation in setting and evaluating goals, being present and involved during the intervention, and developing and participating in home exercise programs [5][6][7][8]. ...
... Nonetheless, the data show the importance of parent presence with respect to engagement with the plan and partnering. Previous work has pointed to the critical role of parents as partners in the care for their child [6], although studies suggest that parent participation may not be beneficial for all parents [5] and may depend on the nature of the intervention [44]. Service providers' years of clinical experience was moderately correlated with higher scores on Plan Appropriateness, suggesting that more experienced providers are more skilled in developing plans in collaboration with parents that take family needs and lifestyles into account. ...
Purpose
To examine the psychometric properties of a parent-report measure of engagement in pediatric rehabilitation.
Method
113 parents (of children 4 months to 18 years, varying in diagnoses) were recruited from standard outpatient/inpatient, early intervention, and life skills programs, sampled from different sites in Canada, the US, and Australia. Parents completed the Pediatric Rehabilitation Intervention Measure of Engagement—Parent version (PRIME-P) twice, after two therapy sessions approximately two weeks apart. Analyses examined factor structure, internal consistency, and test-retest reliability, and assessed construct validity hypotheses concerning participant characteristics and contextual factors.
Results
The resulting 11-item PRIME-P has three factors capturing engagement in terms of Plan Appropriateness, Partnering, and Positive Outcome Expectancy. The factors displayed strong internal consistency and test-retest reliability (Partnering demonstrated slightly weaker test-retest reliability). Construct validity was shown by significant associations between the PRIME-P scales and parents’ presence versus absence during the sessions, as well as service providers’ years of experience.
Conclusions
The PRIME-P captures parent engagement as a multifaceted construct involving appropriateness of the therapy plan, a sense of active partnership in the intervention process, and an expectation for a positive outcome. The PRIME-P has promise for research, clinical practice, and educational purposes.
•
IMPLICATIONS FOR REHABILITATION
• The PRIME-P is a psychometrically sound tool that fills a gap in how researchers and practitioners can measure the engagement of parents in the therapy process.
• To enhance parent engagement, service providers can encourage collaboration in planning, foster a sense of working in partnership, and convey a sense of hope.
• The findings point to the need to pay attention to parents’ beliefs about the therapy plan and outcomes, in addition to their behavioral involvement.
• The PRIME-P is a promising tool for pediatric rehabilitation that can be used to investigate the role of a crucial, yet poorly understood variable in the therapy process.
... Cognitive coaching should be presented through concrete activities to be done at home and at school rather than general concepts and advice. The intervention should be more closely embedded in the family life in order to improve family participation without adding an additional family burden384,385 . Not all families are willing and/or capable of engaging in a family-delivered program385 and evaluating how to predict this prior to intervention would be of benefit to service providers. ...
... The intervention should be more closely embedded in the family life in order to improve family participation without adding an additional family burden384,385 . Not all families are willing and/or capable of engaging in a family-delivered program385 and evaluating how to predict this prior to intervention would be of benefit to service providers. Direct contact with school staff is needed. ...
Part one of this PhD explored executive functions (EF) and related impairments after childhood severe TBI. Executive dysfunction was worse when the injury occurred during the period of rapid development of EF. Paper and pencil tasks underestimated EF impairment in daily life. Impairment in prospective memory persisted at seven years post injury, and into adulthood. A model of child anosognosia, and directions for cognitive rehabilitation interventions, are proposed based on a study of self-awareness after childhood TBI. Part two of this PhD investigated methods of remediating EF dysfunction. A systematic review found that Goal Management Training (GMT) is effective in adults when coupled with personal goal setting, external cueing, personalised homework to increase patients' commitment and training intensity and daily life training activities. Based on this literature review, a paediatric GMT intervention was adapted and tested. The intervention showed limited effectiveness, with inconsistency across outcome measures. Children did not apply the metacognitive strategies taught during the training. Furthermore, there was no evidence of generalisation of task-specific improvements to a novel, parallel version of the secondary outcome measure (the Children’s Cooking Task). The adapted GMT did not seem developmentally coherent for younger children. It is clear that deficits in EF arising from TBI continue to be an important target for rehabilitation interventions in children. Proposals on how the use of novel innovative outcome measures and methodologies may improve the field of EF rehabilitation in children with TBI are presented.
... 3 In current practice of physical therapy for children with physical disabilities, more and more attention is paid to parental participation. 4 The role of parents has changed from a passive one into an active participating one. 4 Research has shown that parental involvement improves the child's outcomes, and the practice of incorporating home therapy programs has increased over the past few decades. ...
... 3 In current practice of physical therapy for children with physical disabilities, more and more attention is paid to parental participation. 4 The role of parents has changed from a passive one into an active participating one. 4 Research has shown that parental involvement improves the child's outcomes, and the practice of incorporating home therapy programs has increased over the past few decades. 5 Parents of children with physical disabilities are reported to have high levels of care taking burdens. ...
... Por otro lado, la participación en el tratamiento de sus hijos puede convertirse en un elemento de estrés adicional para éstos, puesto que "el cuidado dado a un miembro de la familia que tiene una enfermedad crónica puede resultar en sentimientos de sobrecarga, tensión y hasta puede disminuir la calidad de vida del cuidador" (Sales, 2003, citado en Oliveira et al., 2010. Estos padres deben lidiar con las dificultades de criar a un niño con discapacidades físicas y esto se dificulta aún más cuando no cuentan con las herramientas (psicológicas, físicas, económicas, conceptuales) necesarias para afrontar las dificultades (Jansen et al., 2003). ...
... El primer factor es la funcionalidad, que se refiere a la transferencia de la terapia de un contexto institucional hacia el contexto del diario vivir del niño, incluyendo así el desempeño en actividades de la vida diaria. El segundo factor es el efecto que esto tiene sobre el papel de los padres, quienes poseen la capacidad de generar una visión más clara de las deficiencias y habilidades en el diario vivir de sus hijos, lo que resulta una visión contextualizada en términos de desempeño (Jansen et al., 2003). ...
La presente investigación tiene por objetivo analizar las experiencias de madres/padres respecto al proceso terapéutico de sus hijos e hijas con parálisis cerebral. Para ello, se considera relevante entregar una perspectiva contextual de esta patología, otorgando protagonismo a las experiencias de participación de madres/padres de niños/as con esta condición, así como también conocer las implicancias ocupacionales que dicha participación conlleva. Se utiliza una metodología cualitativa con diseño de tipo narrativo. Los principales resultados exponen que la participación de los padres/madres es fundamental en el proceso de recuperación funcional de su hijo/a, sin embargo esto conlleva repercusiones ocupacionales a nivel emocional, social y físico. Se concluye que madres/padres perciben su participación como satisfactoria, aunque ésta varía según el contexto donde se realiza y la severidad del cuadro clínico del niño/a. Asimismo, se distingue un desequilibrio ocupacional en área de ocio y tiempo libre, asociado a la distribución del tiempo trabajo-cuidado del niño/a.
... Perceived physical barriers described by parents in this study align with documented parental stressors, such as adverse events during mobility involving lines, tubes, restraints, and the sights and sounds of a pedi-atric critical care setting [11,[20][21][22][23][24]. All parents perceived institutional features, such as an unpredictable schedule and the coordination of resources required to facilitate handling, as impacting their child's EM. ...
... Moreover, parents in this study declared that opportunities to take part in their child's EM initiatives permitted them to regain a sense of purpose in their parental role. Earlier studies found that parental participation with nursing-related activities improved parental confidence and re-established their role [16,22,35,44]. Our findings highlight the importance of encouraging parents to be active participants in their child's EM interventions, and reassuring them that it can be safe and feasible, when medically appropriate, in a pediatric critical care setting. ...
Purpose:
The aim of this study was to conduct a preliminary investigation into parents' experiences of physical therapy and early mobility (EM) for their children in a pediatric critical care unit (PCCU).
Methods:
We conducted a series of four qualitative case studies using in-depth semi-structured face-to-face interviews. We recruited parents of children who had undergone surgery and received at least one EM physical therapy intervention while intubated. We conducted a thematic analysis of transcribed interviews to illuminate the factors that influenced EM experiences.
Results:
Four parents participated in the study. We developed an overview of Parental Experiences with Physical Therapy and Early Mobility in a PCCU, which includes four themes that parents believed influenced their experiences: (1) environmental factors; (2) awareness of physical therapist and health care professional (HCP) roles; (3) communication among parents and HCPs; and (4) parental participation in their child's EM, within the overarching parental experiences in the PCCU.
Conclusion:
This study affords a preliminary understanding of parents' experiences with physical therapy and EM in a PCCU setting. Results provide an important foundation for future research on mobility in the context of pediatric critical care research and practice.
... The intervention should be more closely embedded in the family life to improve family participation without adding an additional family burden. 82,83 Not all families are willing and/or capable of engaging in a family-delivered program, 83 and evaluating how to predict this prior to intervention would be of benefit to service providers. Direct contact with school staff is needed. ...
... The intervention should be more closely embedded in the family life to improve family participation without adding an additional family burden. 82,83 Not all families are willing and/or capable of engaging in a family-delivered program, 83 and evaluating how to predict this prior to intervention would be of benefit to service providers. Direct contact with school staff is needed. ...
To assess the effectiveness of a metacognitive training intervention, based on an adapted Goal Management Training and Ylvisaker's principles, on 3 activity domains of executive functions: (1) prospective memory (PM) performance in ecological setting, (2) complex cooking task management, and (3) daily executive functioning (EF) at home and at school.
Five children aged 8 to 14 years, who were 3 to 11 years post-severe traumatic brain injury, experiencing severe EF difficulties in daily life.
Single-case experimental design and assessment of EF twice prior to intervention, postintervention, and 3 and 6 months postintervention. Progress was monitored by a weekly ecological PM score. The effect on EF was assessed using the Children's Cooking Task. Transfer to the child's natural context was assessed by parental and teacher questionnaires and Goal Attainment Scaling.
All children improved both on the measure of PM and on questionnaires of daily EF. Two children improved on the Children's Cooking Task but returned to their preintervention level in a novel cooking task at follow-up. Participation of school personnel and parents in the program was low.
It is feasible but challenging to use Goal Management Training in children with traumatic brain injury. Further research is needed in relation to how to promote generalization and how to increase the involvement of the child's "everyday people" in the intervention.
... The intervention should be more closely embedded in the family life to improve family participation without adding an additional family burden. 82,83 Not all families are willing and/or capable of engaging in a family-delivered program, 83 and evaluating how to predict this prior to intervention would be of benefit to service providers. Direct contact with school staff is needed. ...
... The intervention should be more closely embedded in the family life to improve family participation without adding an additional family burden. 82,83 Not all families are willing and/or capable of engaging in a family-delivered program, 83 and evaluating how to predict this prior to intervention would be of benefit to service providers. Direct contact with school staff is needed. ...
Purpose: To determine if Goal Management Training (GMT) is effective for the rehabilitation of executive functions following brain injury when administered alone or in combination with other interventions. Method: Systematic review, with quality appraisal specific to executive functions research and calculation of effect sizes. Results: Twelve studies were included. Four studies were ''Proof-of-principle'' studies, testing the potential effectiveness of GMT and eight were rehabilitation studies. Effectiveness was greater when GMT was combined with other interventions. The most effective interventions appeared to be those combing GMT with: Problem Solving Therapy; personal goal setting; external cueing or prompting apply GMT to the current task; personal homework to increase patients' commitment and training intensity; ecological and daily life training activities rather than paper-and-pencil, office-type tasks. Level of support for GMT was higher for studies measuring outcome in terms of increases in participation in everyday activities rather than on measures of executive impairment. Conclusion: Comprehensive rehabilitation programs incorporating GMT, but integrating other approaches, are effective in executive function rehabilitation following brain injury in adults. There is insufficient evidence to support use of GMT as a stand-alone intervention. ä Implications for Rehabilitation Goal Management Training (GMT) is a well-studied metacognitive intervention for executive dysfunction. Comprehensive rehabilitation programs relying partly on GMT and integrating other approaches are effective in executive function rehabilitation following brain injury in adults. GMT alone does not have sufficient evidence to support it as a training on its own.
... This finding reflects a broad base of literature that highlights the importance of physical therapy, occupational therapy, speech/language pathology, and behavioral therapy to improve health outcomes in a range of pediatric conditions [35,36]. Given that parent participation in therapy services are important for execution of therapy exercises between provider-led visits, the inclusion of an item that captures this element of patient care is consistent with recent literature that emphasizes the importance of the parents' role in their child's therapeutic outcomes [37,38]. ...
Purpose:
Self-efficacy is important for managing chronic conditions; however, its measurement in pediatric healthcare settings remains rare. The goal of this project was to adapt an existing disease-agnostic adult self-efficacy patient reported outcome (PRO) measure to enhance suitability of items for measuring the self-efficacy of parents that manage their children's health conditions.
Methods:
We adapted the existing Patient-Reported Outcomes Measurement Information System® (PROMIS®) adult self-efficacy healthcare measure to parental voice. First, a targeted literature review informed rephrasing of the adult items and identification of new pediatric-specific content. The initial item pool was revised based on input from 12 multidisciplinary experts. Next cognitive interviews of adapted items were simultaneously conducted with English and Spanish-speaking parents of pediatric patients with a range of chronic and/or disabling conditions recruited from a Midwestern children's hospital to finalize the measure.
Results:
Findings resulted in an initial item pool of 33 pediatric-specific items which were narrowed to 31 draft items based on expert input. Parent cognitive interview findings (N = 26) informed further item reduction resulting in a final measure consisting of 30 items representing nine domains. Fourteen items are relevant to children regardless of condition severity (e.g., health care information/decision making; symptom identification/management) and 16 items are relevant to children with specific health care needs (e.g., medication usage, equipment).
Conclusion:
We conducted a first step in developing a condition-agnostic, PRO measure of parental self-efficacy managing their children's chronic and/or disabling conditions that is acceptable and understandable to English and Spanish-speaking parents.
... Professionals reported a high level of agreement with the statement regarding the potential effect of telerehabilitation in enhancing the sense of competence of patients and caregivers in relation to the disability. This perception, based on a screen-mediated observation during remote treatment, has been assessed in previous studies in which professionals' feedback during sessions has shown to make patients and caregivers proactive, thus empowering their ability to care for their loved ones (23,(49)(50)(51)(52)(53)(54)(55)(56)(57)(58)(59). Based on the logit regression, remote media skilled professionals and those below the age of 40 have a higher probability to report that telerehabilitation could favor the patient's/family's sense of competence. ...
Objective: To explore professionals', adult patients', and children's caregivers' perception and satisfaction with telerehabilitation during COVID-19 lockdown.
Design: An observational transversal study on a web-based survey was conducted in order to explore participants' perception and satisfaction of telerehabilitation during COVID-19 lockdown.
Setting: The study was conducted at our Outpatient Neurorehabilitation Service.
Subjects: All rehabilitation professionals, adult patients, and children's caregivers who accepted telerehabilitation were recruited.
Interventions: Participants had to respond to the Client Satisfaction Questionnaire-8 and to a purpose-built questionnaire on their perception and satisfaction of the service provided.
Main Measures: Data were analyzed by qualitative statistics and logistic regression models.
Results: All 144 caregivers, 25 adult patients, and 50 professionals reported a medium-high level of perception and a high level of satisfaction. Results showed a correlation among caregivers of children aged 0–3 and feeling overwhelmed with remote care (OR = 3.27), a low perception of telerehabilitation for enhancing goals (OR = 6.51), and a high perception of feeling helped in organizing daily activity (OR = 2.96). For caregivers of children aged over 6 years, changes in the therapy plan were related to a low perception of feeling in line with the in-person therapy (OR = 2.61 and OR = 9.61) and a low satisfaction (OR = 5.54 and OR = 4.97). Changes in therapy were related to concern (OR = 4.20). Caregivers under 40 and professionals showed a high probability to perceive telerehabilitation as supportive (OR = 2.27 and OR = 5.68). Level of experience with remote media was shown to influence perception and satisfaction.
Interpretation: Telerehabilitation can be a useful practice both during a health emergency and in addition to in-presence therapy.
... Parental involvement can result in significant positive reasons for therapy interventions. 4 However, the process of providing support to therapists is arduous and filled with challenges associated with handling basic parenting tasks. We think about accessibility in every decision we make, whether it be what restaurant to go to, or what kind of vacation we should be planning. ...
Perspective from a father on making the world more accessible for his son.
... Currently, there is advocacy for family-centred care in which stakeholders such as parents are expected to partner with health professionals in the rehabilitation of their children [12][13][14][15]. Parents should be aware of the rehabilitation processes, which include sending their children with disabilities to health facilities and helping them to acquire ATs [16,17]. Early access to ATs for children with disabilities enhances rehabilitation processes, improves the children's confidence and enables them to adapt to life in society [18]. ...
Purpose: Assistive technologies (ATs) are fundamental to the successful educational and societal inclusion of all children with disabilities. In particular, the use of ATs has been found to increase levels of independence in daily living and promote greater access to learning opportunities for children with disabilities. However, the knowledge base and baseline information on the use of ATs is limited in developing countries such as Ghana. In this study, we sought to explore the experiences of parents regarding the use of ATs by their children with disabilities in Ghana.
Materials and methods: We used a survey questionnaire consisting of both open- and closed-ended questions to explore the perspectives of parents with children with disabilities (n = 35) who were attending the rehabilitation unit of a referral hospital.
Results: Although participants acknowledged the benefits of ATs for the development and participation of their children in society, they noted barriers to the usage of ATs by their children. Among several barriers, parents mentioned that they lacked funds to purchase assistive devices. Some parents also mentioned the high cost of ATs and rehabilitation services.
Conclusion: The need for government to include rehabilitation services and ATs in the National Health Insurance Scheme to ease the burden on participants and other implications of the findings for policymaking are extensively discussed.
... 11,12 As therapists we need more knowledge about how to truly integrate training into activities in home life and how to measure the effect of home interventions on family life. This was also supported by Jansen et al. 13 GMFM was used to evaluate development of postural control and motor abilities ranging from lying and rolling to independent walking, running, and jumping. In the present study, no significant difference was seen in lying and rolling in both the groups during all follow ups on GMFM scale. ...
Background: Children with central nervous dysfunction should be given a variety of long-term physical and occupational therapy interventions to facilitate their self-development and to enhance functional independence in movement, self-care, play, school activities and leisure. The present study aimed to investigate the benefit of implementing context-focused intervention approach along with occupational therapy intervention in children with CNS dysfunctions.Methods: This randomized case control study conducted in 30 children with CNS dysfunction aging between 12 months to 48 months were randomly divided into control and experimental groups consisting of 15 children in each group. Control group received conventional occupational therapy for 45 min, and experimental group received context-focused intervention approach for 30 min along with conventional occupational therapy for 15 min (thrice a week). The patients were evaluated at baseline, after 12 and 24 weeks of follow up period on Canadian occupational performance measure (COPM) to evaluate parental perception about intervention, GMFM (gross motor function measure) to study the motor ability of the patient and ICF-CY (International classification of functioning, disability and health for children and youth) for activity participation and performance with evaluation of context.Results: Significant progress in the satisfaction score during 2nd and 3rd follow ups were noted (p <0.001) in experimental group. All the activities in GMFM score except lying and rolling showed significant improvement in experimental group (p <0.001). In experimental group a significant improvement in performance qualifier of ICF was seen during follow ups (p<0.001). The capacity qualifier scoring of ICF was improved in experimental group during 2nd follow up (p = 0.006). Progress in environmental scores of ICF during all the follow ups was noted (p <0.001) in experimental group. Significant correlation in GMFM scores and COPM performance score was noted during last follow-up in both the groups.Conclusions: The findings of the study showed positive results with context focused therapy and thus can be inferred that new intervention approach context focused therapy along with the conventional occupational therapy is very effective in improving the performance of functional tasks in children with CNS dysfunction.
... As part of the PTs' treatment of the preterm infant, they provide support and education for parents who are known to be in a vulnerable situation (Brett et al, 2011;Campbell and Sawyer, 2007;Jansen, Ketelaar, and Vermeer, 2003). The PTs are aware of this vulnerability and the parents' need for support. ...
Background: Physiotherapists (PTs) in primary health care provide services to preterm infants and their parents after hospital discharge. The service should be collaborative and individualized to meet the family’s needs. In this study, we analyze pediatric PTs’ collaborative work in the clinical setting and investigate the PTs’ emerging clinical reasoning (CR) in interaction with the infant and parent(s).
Methods: The study is based on observations of 20 physical therapy sessions and 20 interviews with PTs. We performed a systematic content analysis informed by enactive theory regarding the interactions and co-creation of meaning.
Results and Discussion: CR emerged in reciprocity with the PTs’ interaction with the infant and parent(s). Based on the sensitivity to the infant’s motor abilities and signs of engagement as well as the parents’ need of support and education, the PTs individualized and reasoned about their therapeutic approach. This interactional CR was vulnerable: infant disengagement, parent expectations, and PT preoccupations could obfuscate interactions and hamper CR.
Conclusion: Through mutuality and engagement with the infant and parent(s), the PTs allow the autonomy of interaction to emerge and shape the translation of CR into successful therapeutic actions and learning together with the infant and parent(s).
... Parents are positioned to receive education or help for their child; parental interactions with therapists and caregivers become separate journeys for parent and child. They may also be dissimilar comparing those experienced/lived by parent and the child (Jansen, Ketelaar, & Vermeer, 2003). The child may have a simple, even enjoyable therapy session. ...
Introduction: For children born with physical disabilities, the perspectives and actions of their parents prove significant to their childhood developmental outcomes clinically, educationally, socially, and with regard to community participation. The lived world and perceptions of parents who have children with disabilities however is not well investigated. This study sought to understand parents’ framing of theirs and their children’s disability experiences. Family systems together with family systems intervention models, and disability theory were used to provide structure to interview instrumentation and subsequent analysis. Child-centered and ecologic influences were also used to track the transformative processes over time that infuses parental themes. Methods: Methods for this study followed traditions of heuristic phenomenology. Open-ended parental interviews, written and spoken, together with field notes were used to explore the meanings given to disability. Analysis focused on collective descriptions and critical themes. Results: The nine parents in this study revealed four dominant themes around which their children’s lived lives were both understood and framed. Navigating normal for us; Our pride and joy; Anything but disability; Lived lives, looking back. Each is expressed in the words of parents who reared a child with disabilities into adulthood. Discussion and Recommendations: Parental disability frameworks differ from medical model frameworks and those of disability studies but share similarities with each. The parent themes provided holistic views of what these families have lived and learned. Their perspectives provide potentially vital markers and points of inquiry for interventionists and team members who work with children and families. Themes may also offer categorical means to explore well-being and child outcomes. Additionally, the themes were transformative and empowering for parents, both in the discussion of individual matters and in their narratives. All participants iterated that they welcomed having their voices invited and heard.
... Nevertheless, in the most frequently applied early physiotherapy intervention programmes for infants aged 0-2 years at high risk for cerebral palsy (CP) family involvement in service delivery is still diverse . This diversity matches the heterogeneity in parental participation in physiotherapy of children with physical disabilities reported by Jansen, Ketelaar, and Vermeer (2003). ...
... They describe parents' adaption to their new life as a process of which acknowledgment of their situation and achieving a sense normalcy are important elements (Deatrick, Knafl, & Murphy-Moore, 1999;Graungaard & Skov, 2007;Pelchat & Lefebvre, 2004;Pelchat, Levert, & Bourgeois-Guérin, 2009;Piggot, Paterson, & Hocking, 2002;Watson, Kieckhefer, & Olshansky, 2006). Furthermore, these studies confirm the need to create a parent-provider relationship, building on the uniqueness of each family and devoting attention to the family's uncertainty regarding their situation and their evolving needs (Deatrick et al., 1999;Jansen, Ketelaar, & Vermeer, 2003;Kruijsen-Terpstra et al., 2014;McLaughlin & Goodley, 2008;Piggot et al., 2002;Watson et al., 2006). ...
Having a preterm infant is a life-altering event for parents. The use of interventions intended to support the parents is recommended. In this study, we investigated how parents' perceptions of physiotherapy in primary health care influenced their adaptation to caring for a preterm child. We conducted 17 interviews involving parents of seven infants, at infants' corrected age (CA) 3, 6, and 12 months. The analysis was a systematic text condensation, connecting to theory of participatory sense-making. The parents described a progression toward a new normalcy in the setting of persistent uncertainty. Physiotherapists can ameliorate this uncertainty and support the parents' progression toward normalization, by providing knowledge and acknowledging both the child as subject and the parent-child relationship. Via embodied interaction and the exploration of their child's capacity, the parents learn about their children's individuality and gain the confidence necessary to support and care for their children in everyday life.
... Vanhempien luottamus omiin kykyihin kasvaa, mikä auttaa perhettä kokonaisuutena. (Jansen, Ketelaar & Vermeer 2003;Ketelaar ym. 1998.) ...
... Therapy should, most favourable, be optimized to benefit both children and parents. 107,111 Two common goals of physiotherapy interventions for children with CP are to improve muscle strength and to optimize muscle length. A vast majority of children with CP have spasticity that needs management to prevent contractures, deformities and pain as well as to promote optimal function. ...
... Ketelaar et al compared the motor abilities of children with CP receiving functional therapy with a control group whose therapy was based on the principle of normalization of the quality of movement and although they found no significant difference between the two groups in terms of basic gross motor abilities, more improvements were found in functional skills in daily situations in the functional therapy group compared to the other group (6). Jansen et al presented a review of the literature on parental participation in physical therapy for children with physical disabilities, demonstrating that the child's potential in terms of daily functioning developed when their parents participate in physical therapy (9). According to studies, the purpose of treatment is to help the individual to maximize his or her potential (6). ...
Objectives
The cause of rheumatoid arthritis (RA) as a chronic inflammatory autoimmune disease is still unknown. It appears that both genetic and environmental factors play a role in its pathogenesis. Recent studies reveal that in addition to the CNS, immune cells synthesis neurotransmitters so that these catecholamines can regulate immune functions. The aim of this study is to evaluate the dopamine receptor gene expression profiles on peripheral blood mononuclear cells of rheumatoid arthritis patients in comparison with normal individuals.Material & Methods
In the present study, we investigated dopamine receptor gene expression in PBMCs of 40 RA patients and 40 healthy individuals using Real Time-PCR.The specificities of the obtained Real time PCR products for the respective dopamine receptors fragments were confirmed by sequenced analysis capillary systemResultsWe found that DRD1-DRD5 types of dopamine receptors genes expression profiles of rheumatoid arthritis patients differ compared to healthy individuals. Moreover, a significant difference of DR2 and DR4 gene expression was seen in rheumatoid arthritis patients.Conclusion
This study showed that some types of dopamine receptors genes expression profiles alter in rheumatoid arthritis patients with comparison to healthy individuals Moreover, this alteration possibly could result in dysfunction of dopaminergic system in immune cells and finally lead to rheumatoid arthritis.
... Demonstrando a importância de dar orientações aos pais e/ou cuidadores das crianças com PC, Mancini et al. 17 relatam estudo em que aqueles foram freqüentemente orientados por terapeutas a estimular as crianças em diferentes habilidades e promover sua independência funcional. A importância da participação dos pais na terapia da criança contribui para a otimização do programa de fisioterapia, bem como nos benefícios aos pais, pois os integra nas atividades funcionais do dia-a-dia da criança, levando à redução no estresse e ansiedade deles 18 . ...
The purpose was to verify the effect of a functional physical therapy program on children with cerebral palsy, associated to guidance to parents and/or caregivers; and to search for correlations between the child's functional abilities and caregivers' assistance, by means of the Pediatric Evaluation Disability Inventory (PEDI). Four hemiplegic, spastic children between 24 and 43 months old, classified at the Gross Motor Function Classification System level I, were submitted to four evaluations, the first prior to program onset, and the others 30, 60, and 90 days after the first one. PEDI parts I (Functional abilities) and II (Caregivers' assistance) were used. Caregivers were provided with written instructions on how to best deliver care at home. The physical therapy program consisted of three weekly 1-hour sessions for three months; two sessions were of physical therapy based on Bobath concept, and one, of daily activities training. The analysis of results showed children obtained a significantly higher score at the last assessment as compared to the first. A high, significant correlation was found between PEDI parts I and II (r=1.0; p=0.083). The functional physical therapy program associated to instructions to caregivers proved thus effective to improve the functional performance of level-I children with spastic hemiplegia.
... It has become the norm for service delivery in disability services, a best practice standard for developmental services and generally within child health (Rosenbaum 2011). It has also been highlighted as the preferred approach for professional practice in child psychology (Kazak 2008), social work (Shannon 2004;Neander & Skott 2008), occupational therapy (Hanna & Rodger 2002;Novak et al. 2009), physiotherapy (Litchfield & MacDougall 2002;Jansen et al. 2003) and speech pathology services (Crais et al. 2006). While family-centredness is often described as a philosophy or approach to service delivery (King et al. 2003;Raghavendra et al. 2007), it requires high levels of partnership and collaboration between therapist and parent/carer (Piggot et al. 2003;Novak & Cusick 2006). ...
Aim:
The aim of this grounded theory study was to explore mothers' perspectives of the processes of collaborative goal setting in multidisciplinary child development services involving follow-up home therapy.
Methods:
Semi-structured interviews were conducted in South East Queensland, Australia with 14 mothers of children aged 3-6 years who were accessing multidisciplinary child development services. Interviews were focussed around the process of goal setting.
Results:
A grounded theory of Maternal Roles in Goal Setting (The M-RIGS Model) was developed from analysis of data. Mothers assumed Dependent, Active Participator and Collaborator roles when engaging with the therapist in goal-setting processes. These roles were characterized by the mother's level of dependence on the therapist and insight into their child's needs and therapy processes. Goal Factors, Parent Factors and Therapist Factors influenced and added complexity to the goal-setting process.
Conclusion:
The M-RIGS Model highlights that mothers take on a range of roles in the goal-setting process. Although family-centred practice encourages negotiation and collaborative goal setting, parents may not always be ready to take on highly collaborative roles. Better understanding of parent roles, goal-setting processes and influencing factors will inform better engagement with families accessing multidisciplinary child development services.
... PIH was developed based on clinical experience in working with groups of CP children. In addition, elements from other training programmes (Bower et al. 2001;Ketelaar 1999;Jansen, Ketelaar, and Vermeer 2003), central principles of learning (Hadders-Algra 2000), and the CanChild family-centred concept (Canchild 2010) formed the basis for this programme. ...
Objective: To evaluate the effect on parents of participating in an intensified multimodal programme of habilitation for preschool children with cerebral palsy (CP). Methods: Thirteen pre-school children with CP, and their parents attended four in-patient sessions during the programme period of one-and-a-half years. During each group session, the parents were given lessons in coping strategies and positive adaptation. A group of six CP children receiving traditional follow-up habilitation services and their parents were used as controls. Parental effects were evaluated with Parental Stress Index (PSI) and Life Orientation Test (LOT). Results: Mothers in the intervention group had reduced scores below clinical level on both domains of PSI and an increase in LOT score after the intervention period. No changes in scores were seen for fathers or parents in the control group. Conclusions: The intervention programme seemed to reduce stress and increase optimism among mothers of participating CP children.
Any child may encounter learning difficulties at some time, but they are usually overcome due to the support and encouragement provided by parents and the educational establishments where children are enrolled depending on their age (kindergarten, school). The notion of children with special educational needs (SEN) is used to describe a category of people with learning problems in relation to age or with a handicap/ a disability/ an impairment compared to most of the population. For children with SEN, the intervention through kinetic means represents an effective therapy that can be equally used by parents and teachers in order to facilitate the integration of these children into mainstream education. The purpose of this paper is to carry out a bibliographic study regarding the improvement of the quality of life in children with SEN by applying specific kinetic means that consist of physical exercise and massage, but also by the intervention of other types of therapy, depending on the disability of each subject. Individualisation of physical activities is a general principle applicable to all participants and especially to people with SEN who suffer from various conditions. In conclusion, we claim that the beneficial effects of the movement performed in any form and in any context are undeniable for any child but particularly for those with SEN.
Objective: To assess and evaluate the change in functional skills among children with cerebral palsy (CP) who participated in an intensified habilitation program.
Methods: In this prospective longitudinal study, a cohort of 39 preschool children (2–5 years) with cerebral palsy (Gross Motor Function Classification System levels I–V) together with their parents participated in an intensified multidimensional habilitation program for 1 year. Activities strengthening functional skills were among the main interventions. The children were evaluated with the Pediatric Evaluation of Disability Inventory before and after the program period.
Results: Only children at GMFCS levels I–II showed improvements in mobility and social function on norm-referenced scales. After the intervention period, these children scored similar to the mean for typically developing children of the same age on the social function domain.
Conclusions: Functional skills among preschool children with CP, GMFCS levels I–II, seems strengthened after participation in an intensified habilitation program.
This study was planned to investigate the relationship between the needs, stress levels of mothers with disabled children and family functioning in rehabilitation. The study was conducted with 181 mothers in a private rehabilitation centre in eastern Turkey. The personal information form, ‘Family Needs Assessment Tool (FNAT)’, ‘Perceived Stress Scale (PSS)’ and ‘Family Functioning Scale in Rehabilitation (FFSIR)’ were used in the data collection. In the analysis of data number, percentage, mean score, standard deviations, Mann–Whitney U, Kruskal–Wallis tests and Spearman correlation were used. The mean score of the mothers on the whole FNAT was 67.49 ± 1.85; the mean score of them on the PSS was 24.99 ± 4.32; the mean score of them on the FFSIR was 153.98 ± 20.61. It was found that there was a positive correlation between the mean scores of the mothers on the FNAT and PSS while there was a negative correlation between the mean scores of them on the PSS and FFSIR (p < 0.05). There was a significant relationship between the socio‐demographic characteristics of the mothers and the PSS and FFSIR (p < 0.05). It was determined that the mothers' information needs were high, they had moderate stress levels, and the family functionality was moderate in rehabilitation. It was concluded that the mothers' stress levels increased as the needs of them increased while their stress levels decreased as the functionality of them increased in rehabilitation.
Pediatric home-based physical therapy (PHBPT) provides professional rehabilitation programs at the patient's home, where the activities of daily life are actually performed. PHBPT also allows to avoid the difficulties of transporting children with disabilities to the clinic. Despite these advantages, PHBPT is not yet widely practiced in Korea. There is little objective information regarding the opinions of the main stakeholders on PHBPT. To investigate the awareness and demand of PHBPT among the main stakeholders, 41 pediatric physical therapists (PT) (of 60 contacted) were recruited from different regions of Korea on the basis of the regional population distribution. The recruited PTs completed their questionnaires and also participated in collecting questionnaires from 35 medical doctors (MD) with whom they worked and from randomly selected 201 parents of children with disabilities recruited. The overall response rate was 85.5%. The awareness of PHBPT differed between PTs (95.1%) and parents (67.2%) (p
Objective:
To assess the level of executive functioning among preschool children with cerebral palsy (CP) and evaluate effects of the Program Intensified habilitation (PIH).
Methods:
In this non-randomized, prospective study, 15 preschool children with CP, and their parents attended the PIH for a 1-year period. Executive functions were evaluated using the Behavior Rating Inventory of Executive functions - Preschool version (BRIEF-P), filled out by parents and preschool teachers.
Results:
Before PIH, scores of executive function difficulties were close to the general population mean. After PIH, fathers and preschool teachers reported reduced levels of executive difficulties on, respectively, the Emergent Metacognition Index and the Flexibility Index on the BRIEF-P. Mothers reported no changes.
Conclusion:
The children in our sample showed age-appropriate levels of executive functions before attending PIH. Some aspects of executive skills difficulties were reduced after PIH. Using BRIEF-P contributed to the differentiation of cognitive strengths and weaknesses among the children.
Emotional responses of parents of children with physical disabilities are not clearly addressed in the disability definition and therefore rarely addressed in the course of assessment and management of the disabled patient by the physiotherapists. In the provision of family-centred care for disabled persons, the impact of disablement on every member of the family including carers should be reviewed. This would assist in furthering the bio-psychosocial model of care. This paper briefly outlines the most common emotional responses and collateral disablement experienced by parents of children with disabilities (CWD) and the implications of this to physiotherapy in the family-centred care.
Objectives
To estimate the level of patient compliance regarding the rehabilitation treatment in 0 to 6 year old children with developmental motor conditions and to identify the predicted psychosocial variables.
Method
A retrospective, cross-sectional study was performed by interviewing the caregivers of children undergoing physiotherapy in the General University Hospital of Alicante and the Center for Early Intervention in APSA Alicante, Spain. A total of 88 interviews were performed, 79 of which were analyzed and 9 of which were discarded due to errors in filling out the questionnaires. The psychosocial variables evaluated were social support, confidence in the professional, perceived self-efficacy and anxiety.
Results
The binary logistic regression model performed to predict the probability of patient compliance perceived by the principal caregiver indicated that in 86.7% of the cases, patient compliance was predicted by the degree of confidence the parents had in the physiotherapist as well as their perception of social support. No statistically significant results were detected in the other variables (perceived self-efficacy, anxiety or sociodemographic variables).
Conclusions
This study has demonstrated the importance of the variables related to the social-professional environment versus the individual variables in the rehabilitating treatment compliance. Of these, it is important to note the role of the physiotherapist as a motivator towards compliance behaviors in the parents or tutors. This results emphasizes the need to educate physiotherapists in communication skills and emotional support in order to improve the involvement of the adults in these types of treatments for children with developmental conditions.
Purpose:
The purpose of this study was to explore how parents of children with cerebral palsy, attending mainstream primary schools, perceive the relevance of, and adherence with, exercise programs.
Methods:
A qualitative research with constructivist approach was used. Semi-structured interviews were conducted with parents. Open-ended questions related to their role in supporting the child's recommended exercise program. A thematic analysis approach was used to generate three main themes.
Findings:
The themes were: exercise program management and delivery, perceived feelings and personal responses, and external impact and support.
Conclusion:
Exercise programs, to be implemented by families at home and support workers in school, are often characterized as prescriptive and focused on the child's impairment. These need to be integrated into a more holistic approach that considers family and child preferences. If this is to be achieved, parents' perspectives must play a legitimate part in evaluating the effectiveness of practice.
Children with severe types of cerebral palsy use adaptive seating systems to encourage function and assist in delaying the development of deformity. These systems are often assessed for and provided by occupational therapists. However, there has been no unifying policy or theoretical basis on which these systems are provided and research evidence is lacking, with studies tending to be small and non-controlled.
The International Classification of Functioning, Disability and Health (World Health Organisation 2001a,b) aims to establish a common language for clinical practice as well as research, while bringing together the opposing social and medical models of health care delivery. This paper suggests that the ICF model is an ideal theoretical basis for adaptive seating system assessment and provision, given that these systems often conflict between the medical model of reducing or delaying impairment of body functions and structures and the social model of children and families accessing life and environmental situations through mobility and seating equipment.
The paper considers all the domains of the ICF with regard to the current literature. It concludes that using the model in the context of providing adaptive seating gives occupational therapists both a powerful tool for communicating with children and families as well as managers and a basis for evaluating practice.
Approaches to practice based on partnership and shared decision-making with patients are now widely recommended in health and social care settings, but less attention has been given to these recommendations in children's services, and to the decision-making experiences of non-medical practitioners and their patients or clients. This study explored children's, parents’ and practitioners’ accounts of shared decision-making in the context of community-based physiotherapy services for children with cerebral palsy. Semi-structured interviews were conducted with 11 children with cerebral palsy living in an inner city area of northern England, and with 12 of their parents. Two focus groups were conducted with 10 physiotherapy practitioners. Data were analysed using the constant comparative method. When asked explicitly about decision-making, parents, children and practitioners reported little or no involvement, and each party saw the other as having responsibility for decisions. However, when talking in more concrete terms about their experiences, each party did report some involvement in decision-making. Practitioners’ accounts focused on their responsibility for making decisions about resource allocation, and thereby, about the usefulness and intensity of interventions. Parents indicated that these practitioner-led decisions were sometimes in conflict with their aspirations for their child. Parents and children appeared to have most involvement in decisions about the acceptability and implementation of interventions. Children's involvement was more limited than parents’. While parents could legitimately curtail unacceptable interventions, children were mostly restricted to negotiating about how interventions were implemented. In these accounts the involvement of each party varied with the type of issue being decided and decision-making appeared more unilateral than shared. In advocating shared decision-making, greater understanding of its weaknesses as well as its strengths, and greater clarity about the domains that are suitable for a shared decision-making approach and the roles of different parties, would seem a helpful step.
The aim of this pilot study was to evaluate functional training for children with cerebral palsy (CP). The outcomes examined were goal-achievement, gross motor function, performance of everyday activities, caregiver assistance, parents’perception of family-centredness, and preschool assistants’feeling of competence in the care of the children. The outcome measures used were goal attainment scaling, Gross Motor Function Measure, Pediatric Evaluation of Disability Inventory (functional skills and caregiver assistance scales), Measure of Processes of Care, and a questionnaire. The intervention was carried out in the context of daily life settings, i.e. in an ecological framework. Fourteen children (three females, 11 males; age range 1y 6mo to 6y) with diplegia and tetraplegia, classified at Gross Motor Function Classification System levels II-V, participated in the five-month intervention. Frequency of training towards a specific goal varied between twice a day and 23 times a day, depending on the type of goal. Seventy-seven per cent of goals were fully attained. Gross motor function and performance of daily activities, including social function, improved significantly. A decrease in caregiver assistance was noted in relation to the children's mobility. Parents’perception of family-centredness improved in all domains. Furthermore, the children's preschool assistants felt more competent in their care of the children.
Objective: This study examined the strength of the relationship between parents' perceptions of family- centered, professionally provided caregiving and their emotional well-being (feelings of distress and depres- sion). This was done in the context of other factors that might affect well-being (child behavior problems, coping strategies of parents, protective factors in the social environment, child factors related to disability, and family factors). Method: We asked 164 parents of children with nonprogressive neurodevelopmental disorders (primarily ce- rebral palsy, spina bifida, or hydrocephalus) to complete a series of instruments measuring the constructs of interest. Results: Structural equation modeling showed that more family-centered caregiving was a significant pre- dictor of parents' well-being. The most important predictors of well-being were child behavior problems and protective factors in the social environment. Conclusions: Services are most beneficial when they are delivered in a family-centered manner and address parent-identified issues such as the availability of social support, family functioning, and child behavior problems.
The authors describe the development of a 56-item questionnaire, the Measure of Processes of Care (MPOC-56), designed to find out what parents of a child with a chronic health problem think of the services they and their child receive and of how those services affect psychosocial outcome. The instrument is internally consistent and is reliable on retests. Its validity was shown by positive correlations of its five scales with parents' satisfaction, and negative correlations with parents' stress in relation to services received. The MPOC-56 is a generic measure which can be used for clinical, quality assurance and research purposes.
Parental participation in intervention programs for children with physical disabilities has become an important issue in recent years, often emphasized by both professionals and parents. In this article, recent studies examining parental involvement in intervention programs for children with cerebral palsy are reviewed. Only a few studies were found that were explicitly designed to study the effects of parental involvement. Most of these studies reported positive results, especially regarding child-related outcomes. The effects on the parents were less clear, with positive and negative results reported. One important variable distinguishing programs with positive effects was the degree to which parents were involved in setting goals for their children's programs. Recommendations for practice and future research are given.
The cognitive-behavioral model of stress and coping provided the framework for this study of mothers of physically disabled children (n = 69) and mothers of nondisabled children (n = 63). The first aim was to test for differences between groups in responses to stressful parenting events. As hypothesized, mothers of disabled children reported higher levels of depressive symptomatology. Differences in psychological distress and health status approached significance. The second aim was to explore the mediating influences of coping strategies and cognitive appraisals. As predicted, emotion-focused coping was related to increased psychological distress in mothers of disabled children whereas problem-focused coping was associated with decreased distress. Both relationships were significant even after controlling for differences in type of parenting stressor. Hierarchical regressions showed that 58 and 25% of the variance in psychological distress was explained by the independent variables; however, the predictors were different for the two groups of mothers. Factors that may explain the differential effectiveness of coping and appraisal, and clinical implications of this study are discussed.
Legislatively mandated programs for early intervention on behalf of handicapped infants often stipulate the inclusion of physical therapy as a major component of treatment for cerebral palsy. To evaluate the effects of physical therapy, we randomly assigned 48 infants (12 to 19 months of age) with mild to severe spastic diplegia to receive either 12 months of physical therapy (Group A) or 6 months of physical therapy preceded by 6 months of infant stimulation (Group B). The infant-stimulation program included motor, sensory, language, and cognitive activities of increasing complexity. Masked outcome assessment was performed after both 6 and 12 months of therapy to evaluate motor quotient, motor ability, and mental quotient. After six months, the infants in Group A had a lower mean motor quotient than those in Group B (49.1 vs. 58.1, P = 0.02) and were less likely to walk (12 vs. 35 percent, P = 0.07). These differences persisted after 12 months of therapy (47.9 vs. 63.3, P less than 0.01, and 36 vs. 73 percent, P = 0.01, respectively). We noted no significant differences between the groups in the incidence of contractures or the need for bracing or orthopedic surgery. Group A also had a lower mean mental quotient than Group B after six months of therapy (65.6 vs. 75.5, P = 0.05). The routine use of physical therapy in infants with spastic diplegia offered no short-term advantage over infant stimulation. Because of the limited scope of the trial, our conclusions favoring infant stimulation are preliminary. The results suggest that further study of the effects of both physical therapy and infant stimulation is indicated.
This study was designed to test the hypothesis that one home visit would improve parental compliance to a physical therapy program prescribed for children with delayed motor development. Eighteen mothers and their infants were randomly assigned to two groups, only one of which received the home visit. After one month of following the regimen at home, the parents were evaluated for the degree to which they complied with the prescribed physical therapy program. The motor development of their child was also reassessed. Although mothers who received a home visit showed a higher rate of compliance, the difference was not significant. However, mothers of children with severely delayed motor development demonstrated a significantly higher rate of compliance than did mothers of moderately delayed children (p < .01). The improvement in the developmental level of the children whose parents had received a home visit was demonstrated to be greater. The small number of subjects and several limitations in experimental design preclude drawing any definitive conclusions.
The purpose of this study was to determine whether the motor abilities of children with spastic cerebral palsy who were receiving functional physical therapy (physical therapy with an emphasis on practicing functional activities) improved more than the motor abilities of children in a reference group whose physical therapy was based on the principle of normalization of the quality of movement.
The subjects were 55 children with mild or moderate cerebral palsy aged 2 to 7 years (median=55 months).
A randomized block design was used to assign the children to the 2 groups. After a pretest, the physical therapists for the functional physical therapy group received training in the systematic application of functional physical therapy. There were 3 follow-up assessments: 6, 12, and 18 months after the pretest. Both basic gross motor abilities and motor abilities in daily situations were studied, using the Gross Motor Function Measure (GMFM) and the self-care and mobility domains of the Pediatric Evaluation of Disability Inventory (PEDI), respectively.
Both groups had improved GMFM and PEDI scores after treatment. No time x group interactions were found on the GMFM. For the PEDI, time x group interactions were found for the functional skills and caregiver assistance scales in both the self-care and mobility domains.
The groups' improvements in basic gross motor abilities, as measured by the GMFM in a standardized environment, did not differ. When examining functional skills in daily situations, as measured by the PEDI, children in the functional physical therapy group improved more than children in the reference group.
An intervention study designed to investigate the effects of one hour of maternal and infant behavior was conducted using experimental and control groups of mothers and their infants with cerebral palsy. Ten mother-infant pairs were in each group; infants ranged in age from 8-32 months. Infants of mothers in the control group received one hour of NDT-based occupational therapy. Two-factor repeated measures analysis of variance with repeated measures of the second factor indicated that the nonverbal instruction methods were significantly more successful in modifying maternal and infant behavior than were the verbal instruction methods. Implications of the results for intervention programs and future research were discussed.
One method of evaluating early intervention services is to ask its consumers. The mixed-method approach in this study involved a written survey (quantitative) and in-depth, semi-structured interviews (qualitative). The survey was completed by 539 parents of infants, toddlers, and preschoolers receiving any type of early intervention service. Results showed overwhelming satisfaction with most services, but some concerns were noted in the choices of available mainstreaming options. Interviews showed that families ascribed most of their positive experiences to the supportive behaviors of individual professionals. Bad experiences were most often related to difficulties in finding out about, getting, and monitoring services. Families spent much time and energy in securing more services, particularly therapies, for their children. The discussion focuses on implications for family-centered services and for providing specialized services.
Parent-professional collaboration is an essential component of successful early intervention efforts. A collaborative relationship exists when both parents and professionals view each other as partners, with both providing expertise and knowledge that will help the family reach its goals. Although collaborative relationships are valued within early intervention, little is known about the variables that enhance or detract from collaboration. The purpose of this study was to examine parents' and service coordinators' (SCs) responses to two open-ended questions in a survey sent to over 1,400 parents and SCs. Survey respondents were asked to describe the variables that the other person in the partnership brings to the relationship that either enhance or interfere with collaboration. Survey results suggested that interpersonal and communication skills are critical for successful collaboration. The authors also discuss the microcounseling model, a model of behavioral consultation training that may be useful in preservice and inservice staff development efforts.
This paper reports the correspondence between different measures of parental compliance and the relationship of these compliance measures to change in hand function after therapy intervention. 72 children with cerebral palsy, aged 18 months to eight years, participated in a clinical trial of neurodevelopmental therapy (NDT) and upper-limb casting; home programmes were part of each intervention. Measures of parental compliance comprised: self-rating of understanding and skill using a questionnaire, therapist's rating of parental compliance, attendances, mean time of cast wear and number of days completed home-programme log-book. Parent ratings were the only significant predictor of change in hand function. Parent self-rating was the most useful measure, since it correlated moderately with two other compliance measures and was predictive of change in hand function.
Conductive Education (CE)-based programmes have been introduced to Australia over the past 10 years. The aim of this project was to compare these programmes with traditional neurodevelopmental programmes of rehabilitation for young children (12 to 36 months, mean age 22 months 3 weeks) with cerebral palsy. Thirty-four children were matched by age, motor impairment, and cognitive ability and randomly allocated to CE-based or equivalent-intensity control programmes. Those unwilling to be randomized (32) were still studied but their outcomes were treated separately. Our results indicate that children involved in CE-based programmes made similar progress to those involved in traditional programmes. Statistically significant changes were spread among the four groups of subjects. The foldings also endorsed the measures used and the expected maturational effect was detected. Although there were major difficulties in conducting this randomized trial, it was achieved by gathering parental and professional support, and adequate funding.
The authors compared mothers' and fathers' perceptions of professional caregiving, using the MPOC, a self-administered questionnaire for parents. The authors looked at the aspects of caregiving 128 couples judged to be important, their perceptions of the actual caregiving received from health professionals and their stress. The data, from a relatively large sample of intact families, indicated that there were more similarities than differences between the mothers' and fathers' replies. Both valued the enabling and partnership aspect of caregiving most highly. Only one difference in reported experience was found: mothers reported experiencing significantly more coordinated and comprehensive care than did their spouses. The clinical implications of the findings are discussed, particularly with respect to the involvement of fathers in clinical intervention, and the belief that fathers are uninterested in their children's care.
The purpose of this research was to study the effect of intensive neurodevelopmental therapy (NDT) and upper-extremity inhibitive casting, separately or in combination, on hand function, quality of upper-extremity movement and range of motion of 73 children with spastic cerebral palsy aged 18 months to eight years. There was no significant difference between intensive or regular therapy and casting or no casting for hand function, between intensive and regular NDT, or between intensive NDT plus casting and the other groups for quality of movement and range of motion. Casting led to increased quality of movement and wrist extension after six months. Casting with NDT improved the quality of upper-extremity movement and range of motion. There appear to be no immediate benefits from intensive therapy alone.
Service contacts, perceived helpfulness of services and needs for help were investigated in a sample of 107 families of young children with severe physical disability. Many families were in contact with a multiplicity of different services and overall frequency of contact was high. Despite this, there was evidence of considerable unmet need, particularly in the provision of information to families. Families with the highest levels of unmet need were likely to have experienced high levels of strain from life events and to have children with mental retardation as well as physical disability, fathers in those families were more likely to be unemployed and mothers were more likely to use passive optimism in coping with child problems. The findings indicate the importance of services which are easily accessible to parents, the provision of information to parents about such services, the co-ordination of services through a 'link' person and the accurate and individual assessment of family needs.
Earlier reports of a randomized controlled trial of the Pediatric Home Care (PHC) program for children with chronic physical illness demonstrated overall benefits for the group enrolled in the PHC program. This paper examines which subgroups benefited most (relative to control subjects) and which benefited least from the PHC intervention. Prior to the randomized controlled trial, PHC served those with the most burdensome medical conditions from the families with the fewest coping resources. However, data from the randomized controlled trial (N = 219) show that these were not the subjects who benefited most. Maximal benefit was evident when illness burden was small, but coping resources were low (social, educational, financial, and personal). Analyses of covariance show that subjects in PHC with both low burden and low resources had consistently better outcomes than similar subjects in Standard Care. When the illness burden was similarly low, but resources were more abundant, those in Standard Care appear to have had better outcomes than those in PHC. For those whose illness burden was more severe, the results were mixed. These findings suggest that the conventional priority of allocating existing intervention resources to the medically most burdensome cases may not always be maximally beneficial. Those with less burdensome conditions may derive greater benefit relative to control subjects from an intervention than those with extreme needs. Both medical and social factors should enter into the decision regarding the allocation of scarce resources.
Data from 8 mothers of preschool children with cerebral palsy were collected through intensive interviews concerning their experience with home programs. The data were analyzed with qualitative techniques. Each mother had previously participated in or attempted to use a home treatment program with her child, but none was currently doing so. The mothers' descriptions suggest that they selected activities that were doable and that they could integrate into their daily routines and interactions. Some important characteristics of these activities were that they were enjoyable for the child and not stressful for the child, the mother, or the family.
The purpose of this research was to study the effect of intensive neurodevelopmental therapy (NDT) and upper-extremity inhibitive casting, separately or in combination, on hand function, quality of upper-extremity movement and range of motion of 73 children with spastic cerebral palsy aged 18 months to eight years. There was no significant difference between intensive or regular therapy and casting or no casting for hand function, between intensive and regular NDT, or between intensive NDT plus casting and the other groups for quality of movement and range of motion. Casting led to increased quality of movement and wrist extension after six months. Casting with NDT improved the quality of upper-extremity movement and range of motion. There appear to be no immediate benefits from intensive therapy alone.
To assess the effects of intervention in cerebral palsy, 48 infants 12 to 19 months of age, with mild to severe spastic diplegia, were randomly assigned to receive either 6 months of infant stimulation followed by 6 months of physical therapy (test group) or 12 months of neurodevelopmental physical therapy (contrast group). The infant stimulation protocol consisted of cognitive, motor, sensory, and language activities. Outcome was assessed after 12 months by using Carey Infant Temperament Questionnaire subscores (activity, rhythmicity, adaptability, approach, threshold, intensity, mood, distractibility, and persistence); Roth Mother-Child Relationship Evaluation subscores (acceptance, overprotection, overindulgence, rejection); and Home Observation for Measurement of the Environment subscores (maternal responsiveness, avoidance of restriction and punishment, organization of environment, play materials, maternal involvement, and variety of daily stimulation). Motor and cognitive outcomes suggesting advantage for the test group have been reported previously. After 12 months of intervention, mothers with infants in the contrast group showed a greater improvement in emotional and verbal responsiveness as measured by the Home Observation for Measurement of the Environment (mean score change in control group = 1.2, test group = 0.3 P less than .04). None of the 19 other measures differed significantly between treatment groups in change from baseline. This study demonstrates no short-term systematic effect on temperament, maternal-infant interaction, or home environment attributable to the inclusion of an infant stimulation curriculum in an intervention program for infants with spastic diplegia. It suggests that motor and cognitive advantages associated with infant stimulation are not mediated by measurable changes in the psychosocial variables studied.
Attitudes and beliefs regarding parent participation and home programs in early intervention have significantly changed over the last 30 years on the basis of public policy and the needs of families. This paper discusses traditional and current attitudes and practices regarding parent participation and home programs. These attitudes and practices have been influenced by the medical model, the Education for All Handicapped Children Act (Public Law 94-142), the Education of the Handicapped Act Amendments of 1986 (Public Law 99-457), and parental concerns. We have evolved from believing that, as occupational therapists, we are the experts who teach parents what to do with their child through parent training to believing that parents and professionals need to collaborate as equal partners in developing home activities. Six guidelines are suggested for use in developing family-centered home programs, and the application of some of these guidelines is demonstrated in a case example.
Children with physical disabilities are often treated in physical therapy without a parent present, under the assumption that the parent may "interfere" with therapy and/or the child will be too distracted if a parent is present. The effectiveness of a therapy program with parental involvement was compared to a program without parents involved. Results indicate that training with the mother present was as effective as training without the mother. Our data showed that therapists working with parents can accomplish the goal of therapy in a shorter time period than when the child is treated without the parent.
A group of 10 infants diagnosed as having cerebral palsy or severe motor delays was administered pre/posttest assessments of both standardized and nonstandardized motor-evaluation instruments. Following 6 mo. of therapeutic intervention provided through neurodevelopmental treatment, the motoric gains of these infants were correlated with age, IQ, infant hours in treatment, hours of parental participation, and degree of involvement. Kendall's tau correlations showed a significant relationship between motoric progress and age, parental participation, and degree of involvement. The dilemma faced by habilitation professionals regarding whether or not to encourage parents to participate in therapeutic intervention programs is noted.
A study was made of a parent-centered model for physiotherapy for a group of handicapped children in a sparsely inhabited region in northern Sweden. The parents were responsible for daily therapy, supervised by physiotherapists and occupational therapists. A questionnaire sent to all the parents showed that in 26 of the 39 families who responded the child was receiving daily therapy. Both parents took part in all but three cases, but eight families reported difficulties with the training. The authors conclude that the parents were not overstrained by their high degree of involvement, provided there was close supervision and adequate economic and emotional support.
The ongoing care needed by children with chronic physical illness is a topic of national concern. The Pediatric Ambulatory Care Treatment Study ( PACTS ) is a classic pretest-posttest randomized experiment designed to evaluate a Pediatric Home Care (PHC) program in which an interdisciplinary team provides comprehensive primary health care, support, coordination, patient advocacy, and education to chronically ill children and their families. Home interviews were conducted by an independent research team with the 219 families at enrollment, 6 months, and 1 year; 80% completed all three interviews. Analyses indicate that pediatric home care is effective in improving the satisfaction of the family with care, in improving the child's psychological adjustment, and in lessening the psychiatric symptoms of the mother. The functional status of the children was equally well maintained in both groups, and there was no significant difference in the impact of the illness on the family between the two groups. There are indications that there may be a dose-related effect with respect to the child's psychological adjustment with those in the program for the longest period of time showing the greatest benefit. Such a home care program can be an effective intervention for minimizing the social and psychological consequences of chronic illness.
Relations between maternal stress and the development of infants with handicaps was examined in 72 middle-SES and 72 low-SES families who attended a weekly early intervention program. Measures of maternal stress and development of infants were obtained 10 months apart. Regression analyses predicted 81% of variance in later developmental level with initial Bayley MA, initial Mental Development Index (MDI), SES, initial stress, early intervention participation, and SES x Initial Stress x Attendance interaction. Subsequent maternal stress was predicted (42% variance explained) by initial stress, attendance, initial MDI, number of intervention agencies and MDI x SES x Attendance. Results were interpreted in terms of a transactional model.
To perform an objective evaluation of a programme based on conductive education (CE) for preschool and early school-aged children with cerebral palsy.
The progress of 17 children participating in a CE-based programme (the Yooralla programme) was compared with 17 children enrolled in traditional early childhood services. Videotapes of the children performing items from the Vulpe Assessment Battery (VAB) were scored by assessors blind to the treatment group; three standardized tests of cognitive ability were administered; and the questionnaire on resources and stress (QRS-F) was given to the primary caregiver at the beginning and conclusion of 6 months.
The Yooralla group improved in motor performance and parental coping variables. Both groups showed improvement on the cognitive measures, with the control group demonstrating slightly greater gains.
Conductive education may benefit the motor development of children with cerebral palsy and provide greater parental support. A randomized control study with adequate subject numbers is necessary to confirm this tentative conclusion.
In the new NHS those who provide services for disabled children need to measure and demonstrate their effectiveness, but there are no easily available outcome measures for use by child development centres and teams. The development of an alternative approach, using a series of statements of good practice, is described. Parents of children with cerebral palsy were asked to participate in semistructured interviews, to ascertain the value and relevance of these quality statements. Parents were most concerned about the standard of news breaking and early follow up, the sharing of information, and the supply and repair of equipment. The findings were used to modify the quality checklist and it is proposed that this should form the basis of a "charter for disabled children and their families'.
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