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1.
Eur J Pediatr ; 183(11): 4905-4912, 2024 Nov.
Article in English | MEDLINE | ID: mdl-39264468

ABSTRACT

To evaluate whether attention deficit hyperactivity disorder (ADHD) symptoms differ across cerebral palsy (CP) and the relationship of these symptoms to CP disease data. Each of the three groups (CP, ADHD, and control) included 22 volunteers, aged 6-18. The CP group was divided into two groups, with and without ADHD (CP + ADHD and CP-ADHD). The groups were compared in terms of clinical data, ADHD symptoms, and intelligence levels. ADHD was reported in 36.4% of the CP group and 9.1% of the control group (p = 0.031). The rate of moderate/severe motor disability was higher (p = 0.052), and the Wechsler Intelligence Scale for Children-Revised (WISC-R) (total, performance, verbal) scores were lower in the CP + ADHD group compared to the CP-ADHD group (p = 0.005, p = 0.005, p = 0.002). Cognitive problems/inattention scores were higher in the CP group compared to the control group (p = 0.015). WISC-R (total, performance, verbal) scores were lower in the CP group compared to the ADHD group (p = 0.008, p = 0.001, p = 0.047) and the control group (p < 0.001, p < 0.001, p = 0.001). CONCLUSION: ADHD is more common in CP and may be seen in a predominantly inattentive presentation. It is related to a worse motor disability and intelligence level in CP. WHAT IS KNOWN: • Compared to the general population, ADHD is reported to be more common in children with CP. WHAT IS NEW: • ADHD may be seen in a predominantly inattentive presentation rather than the other presentations in children with CP. • ADHD is related to a worse motor disability and intelligence level in CP.


Subject(s)
Attention Deficit Disorder with Hyperactivity , Cerebral Palsy , Intelligence , Humans , Attention Deficit Disorder with Hyperactivity/diagnosis , Attention Deficit Disorder with Hyperactivity/psychology , Child , Cerebral Palsy/psychology , Female , Male , Case-Control Studies , Adolescent , Wechsler Scales
2.
Child Care Health Dev ; 50(6): e13327, 2024 Nov.
Article in English | MEDLINE | ID: mdl-39343726

ABSTRACT

BACKGROUND: Parents often perceive the news that their child has cerebral palsy (CP) as overwhelming and shocking. They are at increased risk of parental stress and mental health problems, which in turn can affect the interaction between the parent and the child. Parental mental health outcomes are known to be affected by the process of disclosure of a diagnosis. In this study, we aimed to synthesize the current knowledge about parents' experiences and needs regarding communication during the disclosure of the diagnosis of their child with (or at risk of) CP. METHODS: A scoping review following the methodological steps outlined by the Joanna Briggs Institute was performed using PubMed, Embase, CINAHL and PsycINFO. We qualitatively explored parent-reported experiences and needs across included studies, using thematic analysis. RESULTS: A total of 19 studies were included. Six themes were identified, three in relation to experiences (i.e., preceding experiences and feelings, perceptions of the disclosure and emotional impact) and three in relation to needs (i.e., transparency in information, supportive attitude and having a say). Despite high variability across studies regarding parental needs, most studies reported the need for (i) honest and clear information, (ii) good communication skills amongst professionals and (iii) emotional and practical support after diagnosis. CONCLUSIONS: Our findings suggest that parents' experiences and needs in the period when their child's diagnosis of (high risk of) CP is communicated are highly variable, due to an interplay of personal and contextual factors. To facilitate good communication during disclosure, it is crucial that health care professionals assess and understand this complex process and consider parents' needs for open communication and autonomy in the process. Therefore, professionals need to attune to parents' needs and their individual preferences regarding conversations about their child with (or at risk of) CP.


Subject(s)
Cerebral Palsy , Parents , Humans , Cerebral Palsy/psychology , Parents/psychology , Truth Disclosure , Parent-Child Relations , Communication , Child , Child, Preschool , Professional-Family Relations , Needs Assessment
3.
Child Care Health Dev ; 50(5): e13326, 2024 Sep.
Article in English | MEDLINE | ID: mdl-39237254

ABSTRACT

BACKGROUND: The Questionnaire of Young People's Participation (QYPP) was developed for use in children and adolescents. To track participation throughout transition from childhood to adulthood, we adapted it for young adults using focus groups. Aim of this study was to validate this measure, the QYPP-Young Adults (QYPP-YA). METHODS: We recruited young adults with cerebral palsy (CP) and a representative, same-aged sample of the general population (GP). The GP-sample was split into two equivalent subsamples, one part to identify the factor structure via exploratory factor analysis and another part to test the resulting model via confirmatory factor analysis. Reliability and different forms of validity were investigated. RESULTS: The final QYPP-YA includes 17 items assigned to six domains (Autonomy, Independency, Intimate Relationships, Interpersonal Relationships, Social Life, Online Communication). Scales show satisfying internal consistencies in the CP-sample and in the GP-sample, except for 'Online Communication'. Convergent, divergent and known-group validity were confirmed. CONCLUSIONS: The QYPP-YA instrument features promising psychometric characteristics to assess key domains of participation in healthy and disabled young adults. It provides a multidimensional, economic and sound assessment for use in population surveys and clinical trials.


Subject(s)
Cerebral Palsy , Psychometrics , Humans , Male , Female , Cerebral Palsy/psychology , Reproducibility of Results , Young Adult , Surveys and Questionnaires/standards , Adolescent , Social Participation , Interpersonal Relations , Adult , Factor Analysis, Statistical , Focus Groups , Disabled Persons/psychology
4.
Medicina (Kaunas) ; 60(8)2024 Jul 27.
Article in English | MEDLINE | ID: mdl-39202497

ABSTRACT

Background and Objectives: Many children with (CP) and their families in Saudi Arabia struggle emotionally. Unfortunately, there have not been many studies conducted on how to help them with these challenges. This research aims to bring attention to this gap and to explore how a lack of proper mental health care might affect these children's ability to participate in everyday activities. Materials and Methods: In this cross-sectional descriptive study, a survey was conducted between August and October 2023. A total of 300 parents of CP children from Saudi Arabia participated in the study. The impact of psychological care negligence on the occupational engagement of CP children and their families was assessed by designing a valid questionnaire. Results: A total of 300 parents of children with CP participated in this study. The majority of the sample, 71% of parents, said that their children did not receive any psychological care, and 59.7% of the participants said that their children did not even receive a referral to a psychologist. However, 60.3% of parents of children noticed a significant decline in the occupational performance of their children, and 65.7% predicted an improvement in their children's performance with future psychological care. Conclusions: It is clear that there is a lack of awareness about the importance of mental health care for children with CP in Saudi Arabia. This lack of care hinders these children and their families' occupational engagement and social participation.


Subject(s)
Cerebral Palsy , Humans , Saudi Arabia , Male , Cross-Sectional Studies , Female , Child , Surveys and Questionnaires , Cerebral Palsy/psychology , Cerebral Palsy/therapy , Adult , Adolescent , Work Engagement , Child, Preschool , Parents/psychology
5.
Child Care Health Dev ; 50(5): e13322, 2024 Sep.
Article in English | MEDLINE | ID: mdl-39143848

ABSTRACT

OBJECTIVES: The present study aimed to determine whether religious coping mediates the relationship between parenting sense of competence (PSOC) and post-traumatic growth (PTG). METHOD: Cross-sectional research design was used. A sample of 74 mothers (age range; 20-45 years) of CP children (age range; 2-9 years) was collected through purposive sampling from different physiotherapy centres and special education schools of Lahore. PSOC scale, brief RCOPE and PTG inventory were used. RESULTS: Positive religious coping partially mediated (ß = 0.190, 95% CI [0.026, 0.374], p < 0.05) between PSOC and PTG. Partial mediation exists between PSOC and appreciation of life through pathway of positive religious coping (ß = 0.040, 95% CI [0.007, 0.075], p < 05). Full mediation exists between PSOC and personal strength through pathway of positive religious coping (ß = 0.041, 95% CI [0.001, 0.081], p < 0.05) and through negative religious coping (ß = 0.034, 95% CI [0.002, 0.066], p < 0.05). Positive religious coping fully mediated (ß = 0.029, 95% CI [0.007, 0.058], p < 0.05) between PSOC and spiritual change. Moreover, indirect effect of PSOC on relating to others and new possibilities through positive and negative religious coping was non-significant, indicating no mediation. CONCLUSION: Positive religious coping affected the association between PSOC and PTG, that is, mothers of CP children having high parenting competence are more likely to use positive religious coping strategies that results in more PTG.


Subject(s)
Adaptation, Psychological , Cerebral Palsy , Mothers , Parenting , Posttraumatic Growth, Psychological , Humans , Female , Adult , Mothers/psychology , Cross-Sectional Studies , Child , Child, Preschool , Male , Middle Aged , Cerebral Palsy/psychology , Young Adult , Parenting/psychology , Religion and Psychology
6.
Child Care Health Dev ; 50(5): e13320, 2024 Sep.
Article in English | MEDLINE | ID: mdl-39143846

ABSTRACT

BACKGROUND: Standing frames are commonly used by healthcare professionals in their practice with children with cerebral palsy (CP) who do not have an independent standing function. A better understanding of healthcare professionals' attitudes and experiences with standing frames may impact practice and rehabilitation. Therefore, this study aimed to investigate the standing frame practice among healthcare professionals and expand their attitude and experience with the use of standing frames for children with CP. METHODS: This is an explanatory sequential mixed methods study. A cross-sectional survey was conducted, providing quantitative data on 210 healthcare professionals' use of standing frames. The quantitative data were descriptively analysed. Subsequently, the results from the survey were followed up with five focus group interviews of healthcare professionals (n = 14). The qualitative data were analysed using thematic analysis, enabling integration between the quantitative and qualitative data. RESULTS: When quantitative and qualitative data are integrated, expansion between the two datasets occurred. The quantitative dataset emphasised the use of GMFCS levels as a guideline for recommending standing frames, whereas the qualitative data showed that the healthcare professionals' recommendations were based on individual needs. Furthermore, the healthcare professionals expanded the quantitative data, showing that the healthcare professionals' considerations regarding age and dosage were based on clinical experience, and saw the standing frame as having many benefits. CONCLUSION: The healthcare professionals had a child-centred approach, where the child's need for using a standing frame was assessed based on the functional level, stage of development, cognitive level and clinical assessment. All of these considerations showed that the use of standing frames for children with CP was individualised, thereby making it difficult to make unified descriptions.


Subject(s)
Attitude of Health Personnel , Cerebral Palsy , Focus Groups , Humans , Cerebral Palsy/rehabilitation , Cerebral Palsy/psychology , Cross-Sectional Studies , Male , Female , Child , Qualitative Research , Health Personnel/psychology , Adult , Standing Position
7.
Phys Occup Ther Pediatr ; 44(5): 733-747, 2024.
Article in English | MEDLINE | ID: mdl-39118452

ABSTRACT

AIMS: To explore experiences, expectations, and involvement of children and young people (CYP) in decision-making for selective dorsal rhizotomy (SDR) surgery, post-operative physiotherapy treatment and outcomes. METHODS: A qualitative study design using one to one interviews. Five CYP (2 girls and 3 boys) participated, and interviews lasted between 45 min and 2 h. Data were analyzed using thematic analysis. RESULTS: Children and young people are reliant on their parents to make decisions and inform them of the SDR process. Experiences of living with cerebral palsy and its management are centered on their routine social, psychological, and physiological challenges. Individual characteristics and attributes of CYP have an impact on how they cope with the rehabilitation burden and adjust to their changing levels of function and participation. CONCLUSIONS: Although CYP reported that SDR offers them a greater 'freedom to choose' in how they participate in daily life, further consideration is required to meet their psychosocial needs, particularly in preparing for SDR and adjusting afterwards.


Subject(s)
Cerebral Palsy , Qualitative Research , Rhizotomy , Humans , Male , Female , Cerebral Palsy/surgery , Cerebral Palsy/rehabilitation , Cerebral Palsy/psychology , Child , Rhizotomy/methods , Adolescent , Decision Making , Physical Therapy Modalities , Interviews as Topic , Parents/psychology , Adaptation, Psychological , Patient Participation
8.
J Pediatr Nurs ; 78: e133-e140, 2024.
Article in English | MEDLINE | ID: mdl-38997912

ABSTRACT

PURPOSE: This study aimed to determine the level of anxiety, depression, support needs and opinions of mothers of children with cerebral palsy. DESIGN AND METHODS: The study used a descriptive qualitative design. The population of the study consisted of children with cerebral palsy who were educated in special education centers in a province of Eastern Turkey. All participants who volunteered for the study were accepted and the study was completed with 126 mothers. RESULTS: Caregiver mothers with male cerebral palsy patients had higher carer support needs and anxiety total mean scores. The mean scores of depression and anxiety of the mothers who were older were statistically higher. This study found that mothers of children with diseases other than cerebral palsy had statistically higher mean depression scores. The mothers of child with cerebral palsy who had a high gross motor classification score had higher mean carer support needs, depression, and anxiety total scores. CONCLUSIONS: According to the study, depression and trait anxiety were linked to greater maternal support needs. Qualitative interviews revealed that mothers experienced issues such as stigmatization and withdrawal from social activities as a result of their children's illness. PRACTICE IMPLICATIONS: This study shows the relationship of need for support of mothers of children with cerebral palsy and mental problems such as depression and trait anxiety. Pediatric nurses should provide emotional support to mothers and guide them towards support groups and training programs.


Subject(s)
Anxiety , Cerebral Palsy , Mothers , Social Support , Humans , Cerebral Palsy/nursing , Cerebral Palsy/psychology , Female , Mothers/psychology , Turkey , Male , Adult , Child , Depression , Qualitative Research , Caregivers/psychology , Child, Preschool , Needs Assessment , Mother-Child Relations
9.
Eur J Pediatr ; 183(9): 3997-4008, 2024 Sep.
Article in English | MEDLINE | ID: mdl-38951253

ABSTRACT

Children with Cerebral Palsy (CP) experience Social Cognition (SC) difficulties, which could be related to executive functioning. While motor interventions are common, there is limited knowledge about the impact of cognitive interventions on SC in this population. This study examined the relationship between SC and Executive Function (EF) skills and the effectiveness of an EF intervention that included some SC tasks for improving SC in children with CP. SC and EF domains were assessed in 60 participants with CP (30 females; 8-12 years). The relationship between SC and EF baseline scores was analyzed by bivariate correlations and contingency tables. Participants were matched by age, sex, motor ability, and intelligence quotient and randomized into intervention or control groups. The intervention group underwent a 12-week home-based computerized EF intervention. Analysis of covariance was used to examine differences in SC components between groups at post-intervention and 9 months after. Significant positive correlations were found between the SC and EF scores. The frequencies of impaired and average scores in SC were distributed similarly to the impaired and average scores in EFs. The intervention group showed significant improvements in Affect Recognition performance post-intervention, which were maintained at the follow-up assessment, with a moderate effect size. Long-term improvements in Theory of Mind were observed 9 months after. CONCLUSIONS: This study highlights the association between SC and EFs. A home-based computerized cognitive intervention program improves SC in children with CP. Including SC tasks in EF interventions may lead to positive short- and long-term effects for children with CP. CLINICAL TRIAL REGISTRATION: NCT04025749 retrospectively registered on 19 July 2019. WHAT IS KNOWN: • Executive functions and social cognition are associated with social and community participation in people with cerebral palsy. • A home-based computerized cognitive intervention can improve the executive functioning of children with cerebral palsy. WHAT IS NEW: • Social cognition performance is related to core and higher-order executive functions. • A home-based computerized executive function intervention, including social cognition tasks, has positive short- and long-term effects on social cognition skills in children with cerebral palsy.


Subject(s)
Cerebral Palsy , Executive Function , Social Cognition , Humans , Cerebral Palsy/psychology , Cerebral Palsy/rehabilitation , Cerebral Palsy/therapy , Female , Male , Child , Treatment Outcome , Cognitive Behavioral Therapy/methods
12.
Child Care Health Dev ; 50(4): e13293, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38953549

ABSTRACT

BACKGROUND: A large proportion of adolescents with developmental coordination disorder (DCD) are physically inactive. Physical literacy has been described as an important determinant in promoting health behaviours. The potential of exergames to improve physical literacy and activity has been recognized in typically developing children. The aim of the present scoping review was to identify and map the available evidence of this potential for adolescents with DCD. METHODS: A scoping review was performed via a literature search in PubMed, Web of Science, Embase, ERIC and CINHAIL. RESULTS: From 2860 search records, six studies (two studies in DCD and four studies in cerebral palsy [CP]) assessed physical activity, 12 studies discussed exergame features and 16 studies assessed physical literacy domains. In DCD, one study showed positive effects of exergaming on physical activity and the other failed to show any significant effects of exergaming. In CP, all four studies demonstrated positive effects of exergaming on energy expenditure and daily physical activity. Furthermore, positive effects of exergames on the different physical literacy domains were shown, namely motor competence, self-concept and affect, motivation and social/experiential. Finally, exergame features including multiplayer modes, realism, game rewards, challenges and enjoyment were shown to have a significant effect on motivating and encouraging adolescents to exert more effort while playing. CONCLUSION: Based on the positive effects of exergaming on physical activity in other populations, more in-depth research in adolescents with DCD is warranted such that the decline in physical activity behaviour that is present in individuals with DCD can be counteracted. Physical literacy should be regarded as an important determinant in this regard.


Subject(s)
Cerebral Palsy , Exercise , Motor Skills Disorders , Video Games , Humans , Adolescent , Cerebral Palsy/rehabilitation , Cerebral Palsy/psychology , Motor Skills Disorders/rehabilitation , Motor Skills Disorders/psychology , Exercise/psychology , Exercise Therapy/methods , Health Literacy , Health Behavior , Motivation
13.
J Pediatr Nurs ; 78: e314-e322, 2024.
Article in English | MEDLINE | ID: mdl-39054110

ABSTRACT

PURPOSE: This study aimed to explore the experiences of Jordanian mothers of children with cerebral palsy (CP) in order to better understand the challenges they face while caring for their children. DESIGN AND METHODS: A qualitative descriptive study was applied, using semi-structured face to face interviews with a purposive sample of 10 mothers of children with CP. FINDINGS: Mothers caring for children with CP embark on a challenging journey. Navigating the diagnosis begins with shock and disbelief, followed by emotional struggles as they deal with the new reality. This initial phase also involves caregiving challenges and hardships. Mothers may experience societal stigma and feelings of rejection, which can contribute to social isolation. Additionally, the physical demands of care can lead to financial hardships. These financial constraints can further limit access to specialized care, creating a frustrating cycle for mothers. Throughout this process, mothers demonstrate resilience by adapting to the illness. This encompasses making changes in their lives, actively seeking support, and developing expertise in managing their child's specific needs. CONCLUSIONS: The results shed light on the emotional, physical, and social challenges faced by mothers of children with CP. The findings show a narrative of adaptation, resilience, and strength, encompassing adjustments to the diagnosis, substantial life changes, seeking support, and addressing challenges such as social stigma, isolation, and various hardships. PRACTICE IMPLICATIONS: Our findings lay the foundation for tailored interventions and empathic support for mothers caring for a child with CP.


Subject(s)
Adaptation, Psychological , Cerebral Palsy , Mothers , Qualitative Research , Resilience, Psychological , Humans , Cerebral Palsy/psychology , Female , Mothers/psychology , Jordan , Adult , Child , Male , Caregivers/psychology , Social Stigma , Social Support , Child, Preschool , Interviews as Topic , Mother-Child Relations
14.
Res Dev Disabil ; 151: 104783, 2024 Aug.
Article in English | MEDLINE | ID: mdl-38924954

ABSTRACT

Over 50 % of children and youth with cerebral palsy (CP) experience mental health challenges, with anxiety and depression most common. Youth with CP also experience several physiological symptoms such as fatigue, pain, sedentary lifestyle, and sleep disturbances that impact their daily living; however, little is known about the impact of these symptoms on mental health outcomes in these youth. This study addressed this gap and examined the individual and cumulative impacts of physiological symptoms on anxiety and depression symptoms in youth with CP. Forty youth with CP aged 8 to 18 years, and their caregiver, participated in this cross-sectional observational study. Pain, fatigue, anxiety, and depressive symptoms were measured using caregiver- and self-reported questionnaires and participants wore accelerometers for seven consecutive days, providing non-invasive physical activity and sleep pattern data. Youth with CP experienced substantial physiological symptoms and elevated anxiety and depression symptoms. Linear regression models determined that all physiological factors were predictive of caregiver-reported youth anxiety (R2 = 0.23) and youth depressive symptoms (R2 = 0.48). Fatigue, pain severity, sleep efficiency, and physical activity outcomes individually and cumulatively contributed to caregiver-reported youth anxiety and depression symptoms. These findings highlight the important role of physiological symptoms as potential risk factors and potential targets for intervention for mental health issues for in youth with CP.


Subject(s)
Anxiety , Cerebral Palsy , Depression , Fatigue , Pain , Sleep Wake Disorders , Humans , Cerebral Palsy/psychology , Cerebral Palsy/physiopathology , Cerebral Palsy/complications , Male , Female , Adolescent , Anxiety/psychology , Anxiety/epidemiology , Child , Depression/psychology , Depression/epidemiology , Cross-Sectional Studies , Fatigue/psychology , Fatigue/physiopathology , Sleep Wake Disorders/psychology , Sleep Wake Disorders/epidemiology , Sleep Wake Disorders/physiopathology , Pain/psychology , Pain/physiopathology , Sedentary Behavior , Exercise/psychology , Caregivers/psychology , Mental Health , Accelerometry , Self Report , Surveys and Questionnaires
15.
BMJ Paediatr Open ; 8(1)2024 Jun 25.
Article in English | MEDLINE | ID: mdl-38918024

ABSTRACT

BACKGROUND: The COVID-19 pandemic exacerbated challenges faced by children with cerebral palsy (CP), including limited access to therapy services, financial strain and disruptions in schooling and social activities. However, the specific long-lasting impacts of the pandemic on families of children with CP in the South African context remain underexplored. AIM: To explore the long-lasting impact of the COVID-19 pandemic on children with CP in South Africa. METHOD: A qualitative exploratory approach was used. 14 caregivers of 12 children with CP (aged 4-12) were recruited from various CP-specific schools and organisations in urban Johannesburg, South Africa. Individual semistructured interviews were conducted, and each interview was audio recorded, transcribed verbatim and analysed using inductive thematic analysis. RESULTS: Children experienced significant changes to their physical and emotional well-being during the pandemic that had long-lasting effects on their added weight gain and activities of daily living. Many children experienced regressions during the lockdown due to the closure of schools and therapy centres. However, increased screen time observed among children with CP during the pandemic yielded unexpected positive outcomes, such as the improvement of technological skills and enhanced confidence through activities like vlogging. IMPLICATIONS: The pandemic has had long-lasting impacts on children with CP and addressing the multifaceted challenges faced by children with CP and their families in the post-COVID-19 era requires coordinated efforts from all stakeholders to ensure the holistic well-being and inclusion of this vulnerable population. Further research is warranted to assess the long-term impacts of the pandemic and evaluate the effectiveness of interventions aimed at mitigating its effects on this vulnerable population.


Subject(s)
COVID-19 , Caregivers , Cerebral Palsy , Qualitative Research , Humans , COVID-19/psychology , COVID-19/epidemiology , South Africa/epidemiology , Cerebral Palsy/psychology , Cerebral Palsy/epidemiology , Cerebral Palsy/therapy , Child , Caregivers/psychology , Female , Male , Child, Preschool , SARS-CoV-2 , Activities of Daily Living/psychology , Pandemics , Adult
16.
Child Care Health Dev ; 50(4): e13297, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38895968

ABSTRACT

AIM: This study's aim is to determine the relationship between care burden, perceived social support, coping attitudes and life satisfaction of mothers with children with cerebral palsy (CP). METHODS: This descriptive study was conducted in Turkey between March and June 2022 to determine the relationship between caregiving burden, perceived social support, coping attitudes and life satisfaction of 122 mothers with CP children. Path analysis was used to evaluate the data. RESULTS: Correlation analysis showed a positive relationship between mothers' social support perceptions and life satisfaction and coping attitudes, a positive relationship between their life satisfaction and coping attitudes (p < .001). The path analysis showed that the social support perceived by the mothers significantly affected their coping attitudes (ß = .257; p < .001) and life satisfaction (ß = .081; p < .001). Mothers' care burden (ß = .169; p < .001) and coping attitudes (ß = .071; p < .05) also had a significant effect on their life satisfaction. CONCLUSIONS: It is an important finding of this study that mothers' perceptions of social support and coping attitudes have a positive effect on their life satisfaction. Long-term care can cause physical and psychological problems for mothers. Mothers' strong coping strategies and high levels of social support may reduce the occurrence of these problems. Drawing attention to this issue in mothers and revealing the effects of these variables is important in terms of indirectly supporting child outcomes.


Subject(s)
Adaptation, Psychological , Cerebral Palsy , Mothers , Personal Satisfaction , Social Support , Humans , Cerebral Palsy/psychology , Female , Mothers/psychology , Adult , Turkey , Male , Child , Child, Preschool , Caregiver Burden/psychology , Middle Aged , Caregivers/psychology , Adolescent , Young Adult , Surveys and Questionnaires , Cost of Illness
17.
PLoS One ; 19(6): e0305432, 2024.
Article in English | MEDLINE | ID: mdl-38865337

ABSTRACT

INTRODUCTION: Involving parents of children with cerebral palsy (C-CP) in home exercise programmes (HEP) is globally practiced strategy closely linked to improved physical performance and functional outcomes for the child. Nevertheless, non-adherence to HEP is increasing at an alarming rate, and little is known about the factors influencing adherence to HEP (AHEP) especially in parents of C-CP. This systematic review aimed to identify the factors enhancing AHEP among parents of C-CP to reinforce the efficacy of rehabilitation practices proposed by health professionals, researchers, and educators. MATERIALS AND METHODS: We conducted searches in PubMed, Scopus, CINHAL, PsycINFO, and Embase for articles published up to March 2023, that investigated the factors influencing AHEP among parents of C-CP. A narrative synthesis was conducted using the search results and pertinent material from other sources. RESULTS: Overall, non-adherence rates to HEP were moderate to high, ranging from 34% to 79.2%. Strong evidence suggests that factors enhancing AHEP fall into three categories: child-related (such as younger age and better gross motor function [GMF]), the caregiver-related (including high self-efficacy and knowledge, strong social support, low levels of depression, anxiety and stress symptoms, and a low perception of barriers), and the physiotherapist-related. For the latter category, the parent's perception of a supportive and collaborative relationship with the therapist is one of the conditions most favourably influences AHEP. CONCLUSION: Our findings highlight that factors influencing AHEP are multifactorial. Some, such as GMF or the economic and social conditions of the family, are challenging to change. However, the relationship between therapist and parent is an aspect that can be strengthened. These results underscore the importance of substantial training and psychosocial support for therapists to enhance their awareness and competence in building supportive relationship with parents.


Subject(s)
Cerebral Palsy , Parents , Humans , Cerebral Palsy/rehabilitation , Cerebral Palsy/psychology , Parents/psychology , Child , Exercise Therapy/methods , Social Support , Caregivers/psychology , Home Care Services , Patient Compliance/psychology
18.
Qual Life Res ; 33(8): 2247-2259, 2024 Aug.
Article in English | MEDLINE | ID: mdl-38795198

ABSTRACT

PURPOSE: To firstly identify tools for assessing the impact of chronic pain on emotional functioning in children and young people with cerebral palsy (CP), and secondly identify suggestions to improve their relevance, comprehensiveness, comprehensibility and feasibility for the CP population. Improving assessment of the impact of pain on emotional functioning can enhance quality of life by improving access to interventions for pain-related physical disability, anxiety and depression. METHODS: Ethics approval was granted through the Women's and Children's Health Network Human Research Ethics Committee (2022/HRE00154). A mixed methods study with people with lived experience and clinicians, and guided by the Consensus-based Standards for Measurement Instruments (COSMIN), was undertaken. An online survey identified the highest rated tools for validation and/or modification for young people with CP and chronic pain. Focus groups and interviews investigated content validity and feasibility of the tools identified as highest rated. RESULTS: The Fear of Pain Questionnaire for Children-SF (FOPQ-C-SF) and Modified Brief Pain Inventory (mBPI) were the highest rated for pain coping and multidimensional assessment (respectively) from the online survey (n = 61) of eight tools presented. Focus group and interview data (n = 30), including 58 unique modification suggestions, were coded to six categories: accessibility, comprehensibility, feasibility, relevance, presentation and comprehensiveness. CONCLUSION: Potential modifications have been identified to improve the appropriateness and feasibility of the FOPQ-C-SF and mBPI for children and young people with CP. Future research should implement and test these modifications, prioritising the involvement of people with lived experience to ensure their needs are met alongside clinicians.


Up to 75% of children and young people with cerebral palsy report chronic pain, which is much higher than those without cerebral palsy. Assessing how pain impacts emotional functioning, and how each individual copes with pain, is of particular importance due to known links between emotional functioning and long term pain outcomes. Reliable assessment of how pain impacts emotional functioning may also help to identify those who would benefit from psychological treatments. Although pain questionnaires are available, many are not suitable for children and young people with cerebral palsy with different communication, cognitive and movement abilities. This study had two aims: (1) to work out which of the currently available tools that assess how pain impacts emotional functioning are considered best for people with cerebral palsy, and (2) to identify potential modifications to these tools. The two most relevant and easy to understand questionnaires selected for modification were the Fear of Pain Questionnaire for Children and the modified Brief Pain Inventory. A number of modifications were identified, including improving how relevant the questions were to people with cerebral palsy, improving accessibility for people with complex communication needs or cognitive impairment and improving how easy to understand the questions and answer options are. These modifications can now be implemented to make it easier for people with cerebral palsy to use the pain assessments. They should then be tested in people with cerebral palsy with different communication, cognitive and movement abilities.


Subject(s)
Cerebral Palsy , Chronic Pain , Focus Groups , Pain Measurement , Quality of Life , Humans , Cerebral Palsy/psychology , Chronic Pain/psychology , Child , Adolescent , Female , Male , Surveys and Questionnaires/standards , Quality of Life/psychology , Psychometrics , Young Adult , Adaptation, Psychological , Emotions , Adult , Stakeholder Participation
19.
Dev Neurorehabil ; 27(3-4): 69-82, 2024.
Article in English | MEDLINE | ID: mdl-38695307

ABSTRACT

This study explored the home-based participation of young people with cerebral palsy (CP) and described factors that make participation easier or harder. Fifteen young people with CP aged 15 to 26 years provided written reflections, photographs, or videos about their home-based participation experiences. Data were analyzed using reflexive thematic analysis. Self-reported reflections were grouped inductively into 129 codes, then 20 subthemes and 5 themes which emphasized CP characteristics, thoughts, emotions, equipment, environment, supports, and inclusion as important factors influencing home-based participation. Young people with CP largely described the home environment as an inclusive place to participate.


Subject(s)
Cerebral Palsy , Self Report , Humans , Cerebral Palsy/psychology , Cerebral Palsy/rehabilitation , Adolescent , Male , Female , Young Adult , Adult , Social Participation
20.
Qual Life Res ; 33(7): 1881-1891, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38700756

ABSTRACT

PURPOSE: The primary aim was to determine Child Health Utility 9D (CHU9D) utilities from the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) for non-ambulatory children with cerebral palsy (CP). METHODS: One hundred and eight surveys completed by Australian parents/caregivers of children with CP were analysed. Spearman's coefficients were used to investigate the correlations between the two instruments. Ordinary least square, robust MM-estimator, and generalised linear models (GLM) with four combinations of families and links were developed to estimate CHU9D utilities from either the CPCHILD total score or CPCHILD domains scores. Internal validation was performed using 5-fold cross-validation and random sampling validation. The best performing algorithms were identified based on mean absolute error (MAE), concordance correlation coefficient (CCC), and the difference between predicted and observed means of CHU9D. RESULTS: Moderate correlations (ρ 0.4-0.6) were observed between domains of the CHU9D and CPCHILD instruments. The best performing algorithm when considering the CPCHILD total score was a generalised linear regression (GLM) Gamma family and logit link (MAE = 0.156, CCC = 0.508). Additionally, the GLM Gamma family logit link using CPCHILD comfort and emotion, quality of life, and health domain scores also performed well (MAE = 0.152, CCC = 0.552). CONCLUSION: This study established algorithms for estimating CHU9D utilities from CPCHILD scores for non-ambulatory children with CP. The determined algorithms can be valuable for estimating quality-adjusted life years for cost-utility analysis when only the CPCHILD instrument is available. However, further studies with larger sample sizes and external validation are recommended to validate these findings.


Subject(s)
Algorithms , Caregivers , Cerebral Palsy , Disabled Children , Quality of Life , Humans , Child , Male , Female , Caregivers/psychology , Disabled Children/psychology , Australia , Surveys and Questionnaires , Cerebral Palsy/psychology , Child, Preschool , Child Health , Adolescent , Psychometrics , Health Status
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