Validation of Persian Caregivers' Report of Quality of Life questionnaire for adolescents with cerebral palsy

Yarmohammadi, Narjes; Rassafiani, Mehdi; Joveini, Ghodsie; Rostami, Hamid Reza; Mahani, Mohammad Khayatzadeh; Behnia, Fatemeh; Sahaf, Robab; Yazdani, Farzaneh

doi:10.12968/ijtr.2018.25.5.234

Cited by 3 publications

(3 citation statements)

References 14 publications

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“…These data confirm the influence of the emotional state of parents directly on the emotional state of children [9,10]. Strategies for optimizing the physical and psychological health of the caregiver include support for behavioral management and daily functional activity, as well as stress management techniques [11,12].…”

Section: Discussionsupporting

confidence: 65%

“…Strategies to optimize the physical and psychological health of the caregiver include support for behavioral management and daily functional activity, as well as stress management techniques. Therefore, it is very important for specialists of multidisciplinary teams to know the emotional state of parents to correct their quality of life, the effectiveness of clinical interventions and care [32,33].…”

Section: Discussionmentioning

confidence: 99%

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Characteristics of the Psycho-Emotional State of Parents of Children With Paralytic Syndromes and Its Changes During Rehabilitation Measures

Orlova

2022

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Abstract. The current strategy for the treatment of chronic pain in children with paralytic syndromes and neurological lesions, defined by the WHO recommendations in 2012. These recommendations provide a multimodal approach of analgesia for the chronic pain treatment, including the widespread use of non-pharmacological methods and pharmacological therapy. Aim. Assessing the subjective vision of parents of children with paralytic syndromes regarding the impact of physical rehabilitation on chronic pain and their psycho-emotional state. Materials and methods. Data from 64 children and their mothers (64 persons) were included in the study. The age of the children ranged from 1 to 6 years, the median age was 3 years and 3 months. Results. The changed psycho-emotional state of parents of children with paralytic syndromes is determined. If the child has chronic pain, the parents: "Concern about the treatment of the child" is doubled (RR=2.1; p=0.0024), "Hyperopia of the child" - twice (RR=1.9; p=0.0094), "Intolerance to observe the suffering of the child" - one and a half times (RR=1.6; p=0.0017), and increases one and a half times "Sadness and anger when a child cries" (RR=1.5; p=0.0122), "Internal tension" (RR=1.5; p=0.0029), "Insomnia" (RR=1.5; p=0.0215), "Inability of the child to lead a normal image life "(RR=1.5; p=0.0035), "Search for compassion or understanding" (RR=1.5; p=0.0446), "Inner anxiety, feeling of possible trouble" (RR=1.5; p=0.0074). After receiving rehabilitation measures, the psycho-emotional state of the parents of children with paralytic syndromes was determined to decrease: "It is intolerable to observe the child's condition" decreased by 31.3% (p=0.0012); "Feelings of inner anxiety" decreased by 24.5% (p=0.0125); "I fall asleep badly due to the child's condition" decreased by 20.6% (p=0.0109); "Internal tension" decreased by 19.6% (p=0.0269); "Sleepless nights due to the condition of the child" decreased by 18.6% (p=0.0401). Conclusion.The authors consider that physical rehabilitation in children with paralytic syndromes reduces the incidence of moderate chronic pain and improves the emotional state of parents. So, we think that new approaches to rehabilitation should be applied with daily management of the children with paralytic syndromes’ needs and their families with increased psychological and social support. Perhaps the searching for new approaches that optimize more intensive and effective rehabilitation strategies using the family reserve will provide the potential for adaptability of nerve plasticity and recovery in such a contingent of children and prospects for the future.

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Section: Discussionsupporting

confidence: 65%

Section: Discussionmentioning

confidence: 99%

Characteristics of the Psycho-Emotional State of Parents of Children With Paralytic Syndromes and Its Changes During Rehabilitation Measures

Orlova

2022

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“…Internal consistency was reported in six studies, of which five were validity studies where the CP QoL teenager self-report was translated into other languages (Turkish, Persian, Finnish, Polish, and German). In three studies, [51][52][53] there was sufficient evidence of internal consistency and in the other three [54][55][56] there was insufficient or undetermined evidence. In summary, internal consistency was rated as 'low'.…”

Section: Cerebral Palsy Quality Of Lifementioning

confidence: 99%

Pain coping tools for children and young adults with a neurodevelopmental disability: A systematic review of measurement properties

Smith

Gibson

et al. 2022

Develop Med Child Neuro

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Aim: To systematically identify and evaluate the measurement properties of patientreported outcome measures (PROMs) and observer-reported outcome measures (parent proxy report) of pain coping tools that have been used with children and young adults (aged 0-24 years) with a neurodevelopmental disability. Method: A two-stage search using MEDLINE, Embase, CINAHL, Web of Science, and PsycInfo was conducted. Search 1 in August 2021 identified pain coping tools used in neurodevelopmental disability and search 2 in September 2021 located additional studies evaluating the measurement properties of these tools. Methodological quality was assessed using the COnsensus-based Standards for the Selection of Health Measurement INstruments (COSMIN) guidelines (PROSPERO protocol registration no. CRD42021273031).Results: Sixteen studies identified seven pain coping tools, all PROMs and observerreported outcome measures (parent proxy report) versions. The measurement properties of the seven tools were appraised in 44 studies. No tool had high-quality evidence for any measurement property or evidence for all nine measurement properties as outlined by COSMIN. Only one tool had content validity for individuals with neurodevelopmental disability: the Cerebral Palsy Quality of Life tool.Interpretation: Pain coping assessment tools with self-report and parent proxy versions are available; however, measurement invariance has not been tested in young adults with a neurodevelopmental disability. This is an area for future research.

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Chronic Pain and Physical Therapy in Children With Paralytic Syndromes: Are There Any Changes During Lockdown?

et al. 2022

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The aim: To evaluate an influence of physical therapy on chronic pain in children with paralytic’s syndrome and to maternal emotional status on lockdown time during the COVID-19 pandemic. Materials and methods: Data from 96 children and their mothers (96 persons) were included in the study. On-site services of physical therapists before the pandemic (2018- 2019) were received by 64 children and by 32 children during quarantine measures due to COVID-19 pandemic (2020). The age of the children ranged from 1 to 6 years, the median age was 3 years and 3 months. Results: We note that there were more boys with paralytic syndromes. Among the leading paralytic syndromes, the most common was spastic tetraparesis. The frequency of children with level III–V motor disorders prevailed. Conclusions: The authors consider that physical rehabilitation in children with paralytic syndromes reduces the incidence of moderate chronic pain and improves the emotional state of parents. But, these changes do not occur during the pandemic.

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Validation of Persian Caregivers' Report of Quality of Life questionnaire for adolescents with cerebral palsy

Cited by 3 publications

References 14 publications

Characteristics of the Psycho-Emotional State of Parents of Children With Paralytic Syndromes and Its Changes During Rehabilitation Measures

Characteristics of the Psycho-Emotional State of Parents of Children With Paralytic Syndromes and Its Changes During Rehabilitation Measures

Pain coping tools for children and young adults with a neurodevelopmental disability: A systematic review of measurement properties

Chronic Pain and Physical Therapy in Children With Paralytic Syndromes: Are There Any Changes During Lockdown?

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