Psychological Well-Being Among Parents of Children With Cerebral Palsy

The study focuses on families raising a child with cerebral palsy to investigate family strengths and their association with family and parent demographic characteristics in Greece and Italy. Participants were 120 parents raising a biological child with cerebral palsy. Data collection used a self-report questionnaire and the Family Strengths Inventory. According to the findings, families share a high sense of family strengths, which is mainly represented in the high sense of ‘pride’ and ‘accord’. In addition, demographic characteristics seem to be important predictors of well-being and strengthen parents and families raising a child with cerebral palsy.

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Emotional well-being and social support as important factors affecting the quality of life of parents of a child with cerebral palsy

Serviço Social e Saúde ◽

10.20396/sss.v18i0.8656805 ◽

2019 ◽

Vol 18 ◽

pp. e019002

Author(s):

Katarína Molnárová Letovancová ◽

Miriam Slaná ◽

Michaela Hromková

Keyword(s):

Quality Of Life ◽

Social Support ◽

Cerebral Palsy ◽

Well Being ◽

Average Score ◽

Family Quality Of Life ◽

Life Questionnaire ◽

Quality Of Life Scale ◽

Children With Cerebral Palsy

The birth of a child with cerebral palsy is an enormous challenge for the parents which has a direct impact on their quality of life. Therefore, we believe it is important to pay attention to this topic. To that end, we conducted research on the quality of life of parents of children with cerebral palsy in 2018. To achieve our goal, we applied quantitative research strategy and used a valid research tool, i.e. a standardized quality of life questionnaire – Family Quality of Life Scale ("FQOL"). The average score reached by respondents was 94.0918 points which indicates a higher quality of life in respondents than expected. The evaluation of the average score for each dimension of the scale showed that respondents scored the lowest in the "Emotional Well-Being" dimension (13.2551 points) and "Social Support" (15.6429 points). The research further confirmed that there were statistically significant differences in the quality of life of respondents depending on their age (t = -2.341, p = 0.021), marital status (F = 3.476, p = 0.019) and the territorial region (χ2 = 15.39, p = 0.031). A statistically significant relationship between the quality of life of respondents and the age of the child with cerebral palsy (0.288 **, p = 0.004) was confirmed. Despite a relatively high score that indicated a higher quality of life in respondents, the research identified two areas in which parents of children with cerebral palsy had a lower quality of life, namely, their emotional well-being and social support.

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Occupational balance and quality of life in mothers of children with cerebral palsy

British Journal of Occupational Therapy ◽

10.1177/0308022621995112 ◽

2021 ◽

pp. 030802262199511

Author(s):

Ayla Günal ◽

Serkan Pekçetin ◽

Petra Wagman ◽

Carita Håkansson ◽

Hülya Kayıhan

Keyword(s):

Quality Of Life ◽

Cerebral Palsy ◽

Nottingham Health Profile ◽

Occupational Therapists ◽

Well Being ◽

Emotional Reaction ◽

Typically Developing ◽

Typically Developing Children ◽

Children With Cerebral Palsy

Introduction Occupational balance (OB) is an important concept in occupational therapy and is considered as an essential component of health and well-being. The aim of this study was to show differences in OB and quality of life (QoL) between mothers of children with cerebral palsy (CP) and typically developing children. Methods Thirty-six mothers of children with CP and 36 mothers of typically developing children participated in the study. The mothers’ OB was evaluated using the Turkish Occupational Balance Questionnaire-11 (OBQ11-T), and their QoL was evaluated with the Nottingham Health Profile (NHP). Results The OBQ11-T, total score, and the item ‘balance between obligatory and voluntary occupations’ score differed significantly between the groups ( p < 0.05). There were also significant differences in NHP’s aspects of emotional reaction, social isolation, and sleep scores between the groups ( p < 0.05). A negative correlation was detected between OBQ11-T total and NHP total scores in mothers of children with CP ( p < 0.01). Conclusion This study demonstrates that occupational therapists should pay attention to balance between obligatory and voluntary occupations to promote occupational balance. Also, QoL in mothers of children with CP should be evaluated. Therefore, occupational therapists should implement interventions to increase them when necessary for mothers of children with CP.

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Mindfulness-Based Interventions for Caregivers (Parents) of Children With Cerebral Palsy

10.4018/978-1-7998-8682-2.ch008 ◽

2022 ◽

pp. 127-143

Author(s):

Nandini Sharma ◽

S. Z. H. Zaidi ◽

Syed Sajid Husain Kazmi

Keyword(s):

Cerebral Palsy ◽

Perceived Stress ◽

Stress Reduction ◽

Mental State ◽

Children With Disabilities ◽

Well Being ◽

Present Moment ◽

Children With Cerebral Palsy ◽

Bodily Sensations ◽

Mindfulness Based Stress Reduction

Families of children with disabilities often experience high levels of stress associated with taking care of a child with disability. The perceived stress by the caregivers may often lead to negative outcomes in day-to-day functioning for caregivers themselves as well as the child. Mindfulness as an element of consciousness has been acknowledged to promote positivity and well-being among individuals. It is a mental state achieved by focusing one's awareness on the present moment, while calmly acknowledging and accepting one's feelings, thoughts, and bodily sensations. This chapter focuses on the application of mindfulness-based therapies for caregivers (parents) of children with cerebral palsy. This chapter also entails in detail therapeutic techniques like Mindfulness-Based Stress Reduction (MBSR), its in-depth description, background, and applications as an effective approach for the intervention of caregivers.

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Play and Be Happy? Leisure Participation and Quality of Life in School-Aged Children with Cerebral Palsy

International Journal of Pediatrics ◽

10.1155/2012/387280 ◽

2012 ◽

Vol 2012 ◽

pp. 1-7 ◽

Cited By ~ 27

Author(s):

Keiko Shikako-Thomas ◽

Noémi Dahan-Oliel ◽

Michael Shevell ◽

Mary Law ◽

Rena Birnbaum ◽

...

Keyword(s):

Quality Of Life ◽

Cerebral Palsy ◽

Pearson Correlation ◽

Leisure Activities ◽

Multiple Linear Regression Model ◽

Well Being ◽

School Age Children ◽

Leisure Participation ◽

Children With Cerebral Palsy

The objective of this study was to examine the association between leisure participation and quality of life (QoL) in school-age children with cerebral palsy (CP). Leisure participation was assessed using the Children’s Assessment of Participation and Enjoyment (CAPE) and QoL using the Pediatric Quality of Life Inventory (PedsQL). Pearson correlation coefficients were calculated to examine the association between CAPE and PedsQL scores, and a multiple linear regression model was used to estimate QoL predictors. Sixty-three children (mean age9.7±2.1years; 39 male) in GMFCS levels I–V were included. Intensity of participation in active-physical activities was significantly correlated with both physical (r=0.34,P=0.007) and psychosocial well-being (r=0.31,P=0.01). Intensity and diversity of participation in skill-based activities were negatively correlated with physical well-being (r=−0.39,P=0.001, andr=−0.41,P=0.001, resp.). Diversity and intensity of participation accounted for 32% (P=0.002) of the variance for physical well-being and 48% (P<0.001) when age and gross motor functioning were added. Meaningful and adapted leisure activities appropriate to the child’s skills and preferences may foster QoL.

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Quality of life of children with cerebral palsy treated with botulinum toxin: are well-being measures appropriate?

Arquivos de Neuro-Psiquiatria ◽

10.1590/s0004-282x2008000500009 ◽

2008 ◽

Vol 66 (3b) ◽

pp. 652-658 ◽

Cited By ~ 7

Author(s):

Taísa R. Simões de Assis ◽

Edilson Forlin ◽

Isac Bruck

Keyword(s):

Quality Of Life ◽

Cerebral Palsy ◽

Botulinum Toxin ◽

Botulinum Toxin Type A ◽

Well Being ◽

Botulinum Toxin Type ◽

Group I ◽

Children With Cerebral Palsy ◽

Previously Treated

AIM: To analyze quality of life (QOL) of children with cerebral palsy (CP) treated with botulinum toxin type A (BTXA). METHOD: Two QOL evaluation tools, translated into Portuguese, were used: Pediatric Outcomes Data Collection Instrument (PODCI) and Child's Caregiver Questionnaire (CCQ). Questionnaires were answered by caregivers on two occasions. Patients were divided into 3 groups: I - patients who had been previously treated with BTXA and who underwent a session of BTXA; II - patients who used BTXA for the first time; III - patients previously treated with BTXA but did not in this interval. RESULTS: Sixty-eight patients were evaluated. In group I (n=26) the functional ability had improvement for all types of CP (p=0.04), and tetraplegic increased interaction/communication (p=0.02). In group II (n=14) positioning improved (p=0.02). Group III (n=28) showed no change in QOL. CONCLUSIONS: PODCI and CCQ are able to capture outcome in children with CP.

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Burden and quality of life of informal caregivers of children with cerebral palsy

Rev Rene ◽

10.15253/2175-6783.20212261752 ◽

2021 ◽

Vol 22 ◽

pp. e61752

Author(s):

Abigail Oluwadunni Davis ◽

Oladapo Michael Olagbegi ◽

Kayode Orekoya ◽

Mathew Adekunle ◽

Olufemi Oyeleye Oyewole ◽

...

Keyword(s):

Quality Of Life ◽

Cerebral Palsy ◽

Caregiver Burden ◽

Informal Caregivers ◽

Well Being ◽

Cross Sectional Survey ◽

Strain Index ◽

Cross Sectional ◽

Children With Cerebral Palsy

Objective: to analyze the caregiver burden and the quality of life of informal caregivers of children with cerebral palsy. Methods: the cross-sectional survey involved 109 caregivers of children with cerebral palsy recruited from physiotherapy clinic at a tertiary hospital. The quality of life and caregiver burden were assessed using the Personal Wellbeing Index Scale and the Modified Caregivers’ Strain Index, respectively. Data were analysed using descriptive and inferential statistics. Results: the mean strain index and quality of life scores of the participants were 11.85 ± 5.72 and 64.68 ± 8.03 respectively. The majority (67.9%) of the caregivers had fair personal well-being, while about one-third (33.0%) had high caregiver’s strain. Child’s age (B=2.454; p<0.005) and caregivers’ occupation (B= -2.547; p=0.001) were predictors of caregiver strain. Conclusion: caring for children with cerebral palsy imposed a substantial burden on the caregivers and child’s age and caregivers’ occupation were predictor variables.

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Sensomotoric Orthoses, Ankle–Foot Orthoses, and Children with Cerebral Palsy: The Bigger Picture

Children ◽

10.3390/children7080082 ◽

2020 ◽

Vol 7 (8) ◽

pp. 82

Author(s):

Clare MacFarlane ◽

Robin Orr ◽

Wayne Hing

Keyword(s):

Quality Of Life ◽

Cerebral Palsy ◽

Well Being ◽

Foot Orthoses ◽

Timed Up And Go ◽

Gross Motor ◽

Ankle Foot Orthoses ◽

Children With Cerebral Palsy ◽

Gait Score

Ankle–foot orthoses (AFOs) and sensomotoric orthoses (SMotOs) are two—clinically relevant, yet under researched—types of lower limb orthoses used in children with cerebral palsy (CP). Quality of life is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. Evaluating the effect of these two types of orthoses on quality of life in children with CP has not been reported on. The aim of this case study series was to synthesise and enrich the volume of evidence reported to inform real world applications of SMotO use in children with CP. Participants recruited were children with CP who performed the Berg Balance Scale, Timed Up-and-Go, the Gross Motor Function Measure and/or the Edinburgh Visual Gait Score in AFOs, SMotOs and barefoot where able. Qualitative data included videos of gait, a questionnaire and pedographs. Eight participants completed 39 quantitative and six qualitative measures, with the Edinburgh Visual Gait Score (EVGS) reporting the highest response. A general improvement was seen in gross motor skills and gait when wearing the SMotOs compared to AFOs and some parents reported that SMotOs were preferred. The reader is able to correlate the quantitative results with the qualitative evidence presented.

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