Emotional well-being and social support as important factors affecting the quality of life of parents of a child 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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Quality of life and Social Support Among Diagnose Bipolar Patients

10.53350/pjmhs21155932 ◽

2021 ◽

Vol 15 (5) ◽

pp. 932-935

Author(s):

M Adnan ◽

T Khan ◽

B Razzaq ◽

R Ghaffar ◽

S Batool ◽

...

Keyword(s):

Quality Of Life ◽

Social Support ◽

Psychiatric Treatment ◽

Bipolar Affective Disorder ◽

Well Being ◽

Recovery Phase ◽

Cross Sectional ◽

Quality Of Life Scale ◽

Bipolar Patients

Aim: To ascertain the relationship between quality of life and social support in bipolar patients who have been diagnosed. STUDY DESIGN: cross-sectional research design Place and duration of the study: The research was performed impatiently on the Sheikh Zayed Medical College, Rahim Yar Khan at the Department of Psychiatry and Behavioral Sciences, which ran from January 2018 to July of 2019. Method: Data was retrieved from 100 patients, with diagnosed patients of bipolar affective disorder. Quality of life and social support were assessed by quality of life scale (QOLS) developed by Burckhardt and Berline social support scale (BSSS) developed by Berline. Results: Research claims a close relationship between the presence of such things as quality of life and social help for people with Bipolar Disorder. Conclusion: Bipolar is linked to inadequate health and quality of life and social isolation, mostly due to ineffective social skills. Social support is critical to emotional stability and quality of life. It may help patients deal with difficulties and reduce depression and help in both the recovery phase and positive results of psychiatric treatment. What is currently being sought to be learned is how social care has an impact on the level of well-being for bipolar patients. Keywords: Quality of life, bipolar, validation, generalization

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FACTORS AFFECTING QUALITY OF LIFE AND LEVEL OF SOCIAL SUPPORT IN CANCER PATIENTS

Belitung Nursing Journal ◽

10.33546/bnj.48 ◽

2017 ◽

Vol 3 (2) ◽

pp. 54-64 ◽

Cited By ~ 2

Author(s):

Ayse Berivan BAKAN ◽

Asuman GURAKSIN

Keyword(s):

Quality Of Life ◽

Social Support ◽

Cancer Patients ◽

Social Relations ◽

Perceived Social Support ◽

Well Being ◽

Global Quality ◽

Quality Of Life Scale ◽

Global Quality Of Life

Background: When people face health problems, their life satisfaction levels and social relations could be ruined. When it comes to an eerie, deadly and chronic disease like cancer, the individual is much more likely to be affected by it.Objective: This descriptive study aims to identify quality of life and level of social support and the affecting factors in cancer patients.Methods: The sample included 170 patients who applied to Internal Diseases, Radiation Oncology, Thorax diseases clinics and Chemotherapy polyclinic in a university hospital in Turkey between March and August, 2005, who met the research criteria, and who volunteered to participate in the study. The sample represented 20 % of the target population. Data were collected through SF-36 Quality of Life Scale and Multidimensional Scale of Perceived Social Support.Results: The patients’ Global Quality of Life mean score was found 38.67 ± 13.64, and mean score for the Perceived Social Support was found 59.19 ± 17.5. Global Quality of Life score was higher in those who underwent an operation and who received ambulatory health care. Although Global Quality of Life was not influenced by the gender variable, male patients’ level of well-being was found to be higher. Perceived Social Support total score was found to be higher in those who knew about their disease. Family support was found to be higher in those who were married and who lived in town; it was found to be low in those who had low socio-economic level and who received inpatient treatment. Friend support was found to be high in those who knew about their disease.Conclusion: There was a linear relationship between Perceived Social Support and Quality of Life. It is recommended that more studies with wider groups of participants would shed more light to the issue of identifying quality of life, social support level and the relationships between them in cancer patients.

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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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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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Estudio piloto de diseño de un sitio web para el bienestar de cuidadores de niños con parálisis cerebral

Universitas Psychologica ◽

10.11144/javeriana.upsy13-4.psdw ◽

2014 ◽

Vol 13 (4) ◽

Author(s):

Mercè Boixadós ◽

Benigna Gómez-Zúñiga ◽

Eulàlia Hernández-Encuentra ◽

Noemí Guillamón ◽

Diego Redolar-Ripoll ◽

...

Keyword(s):

Quality Of Life ◽

Social Support ◽

Cerebral Palsy ◽

Pilot Study ◽

Family Communication ◽

Scientific Literature ◽

Online Intervention ◽

Preliminary Results ◽

Children With Cerebral Palsy

The objective is to present a website designed to improve the quality of life of caregivers of children with cerebral palsy and show data concerning its usefulness. The website was developed in accordance with scientific literature about caregivers’ burden. We organized the website around different sections (e.g. family communication, learning to relax) and social support forums. The interactive features of the site were designed to accommodate different caregivers’ needs and enable them to choose different pathways according to their own individual needs. Participants were 10 caregivers who took part in a pilot study and completed a questionnaire to analyze the usefulness of the website after five months using it. Preliminary results suggested that the website was useful for participants. The most useful sections were the “peer-to-peer” and the professional forums. This study shows the potential of an online intervention for parents of children with cerebral palsy.

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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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Study on Relationship Between Family Cohesion and Adaptability, and Quality of Life of Caregivers of Children with ASD

SOCIAL WELFARE INTERDISCIPLINARY APPROACH ◽

10.21277/sw.v1i8.340 ◽

2018 ◽

Vol 1 (8) ◽

pp. 132

Author(s):

Xianmei Lei

Keyword(s):

Quality Of Life ◽

Family Cohesion ◽

Well Being ◽

General Level ◽

Family Quality Of Life ◽

National Norm ◽

Children With Asd ◽

Family Adaptability ◽

Quality Of Life Scale

The present study aimed at exploring the status of family cohesion, adaptability and quality of life of caregivers of children with ASD, as well as the relationship between family cohesion and adaptability, and quality of life. One hundred and sixty-three caregivers of children with ASD from Sichuan province in China were investigated by the Chinese vision of Family Adaptability and Cohesion Scale and Beach Center Family Quality of Life Scale. The results showed that: (1) The score on family cohesion of caregivers of children with ASD was higher than the national norm, and the score on family adaptability was lower than the national norm; (2) The satisfaction of quality of life was between general level and satisfactory level, and the score on satisfaction in each dimension from high to low was Family Interaction, Parenting, Disability-Related Support, Emotional Well-Being and Physical/Material Well-Being; (3) Family cohesion and quality of life were significantly correlated, and adaptability and quality of life were also significantly correlated; (4) Caregivers with higher family cohesion and adaptability showed higher quality of life than the caregivers with lower family cohesion and adaptability; (5) Family cohesion and adaptability had a positive impact on quality of life.

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Validity and Reliability of the German Version of the CP QOL-Child and CP QOL-Teen Questionnaire

Neuropediatrics ◽

10.1055/s-0041-1740377 ◽

2021 ◽

Author(s):

Manuel Maier ◽

Corinna Stoltenburg ◽

Akosua Sarpong-Bengelsdorf ◽

Susanne Lebek

Keyword(s):

Quality Of Life ◽

Cerebral Palsy ◽

Children And Adolescents ◽

Well Being ◽

Self Report ◽

Life Questionnaire ◽

German Version ◽

Validity And Reliability ◽

German Speaking

AbstractThe aim of the study was to determine the psychometric properties of the German version of the Cerebral Palsy Quality of Life Questionnaire for Children and Adolescents (CP QOL-Child and -Teen). It is a condition-specific questionnaire with a self-report version, measuring well-being rather than ill-being, which differs from existing measurement methods. Fourteen children (9–12 years) and 64 caregivers (4–12 years) answered the child questionnaire. Twenty-one adolescents and 26 caregivers (all adolescents 13–18 years) replied to the teen version. Functioning was categorized by the Gross Motor Function Classification System. For CP QOL-child internal consistency (Cronbach's α) ranged from 0.58 to 0.88 and for CP QOL-Teen from 0.68 to 0.95. Test–retest reliability after 2 to 4 weeks ranged between 0.75 and 0.94 in children's version and 0.89 and 0.96 in teen's version. Correlation with well-established generic KIDSCREEN-10 questionnaire was moderate to strong. The German versions of CP QOL-Child and -Teen are appropriate tools for assessing the quality of life of children and adolescents with cerebral palsy in the German-speaking population.

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Investigation on Quality of Life and Economic Burden of Children with Cerebral Palsy in Changzhou

Journal of Healthcare Engineering ◽

10.1155/2022/1519689 ◽

2022 ◽

Vol 2022 ◽

pp. 1-9

Author(s):

Chaorong Bian ◽

Feng Peng ◽

Haibin Guo ◽

Kejin Chen

Keyword(s):

Quality Of Life ◽

Cerebral Palsy ◽

General Population ◽

Economic Burden ◽

Population Level ◽

Disabled Persons ◽

Average Score ◽

Children With Cerebral Palsy ◽

Socioeconomic Burden

Based on the data of children with cerebral palsy (CP) in Changzhou obtained by the Disabled Persons’ Federation, this study sampled some children with CP and investigated their survival status, treatment cost, and family burden so as to provide scientific decision-making basis and policy suggestions for coping with disease hazards and improving children’s quality of life. In this study, a simple random sampling method was used to conduct household surveys of the selected children with CP. The economic burden of CP is measured by direct and indirect methods, and the quality of life of patients of children with CP and their families is analyzed qualitatively and quantitatively by the EuroQol Five Dimensions (EQ-5D) Questionnaire. The average family economic burden of each case of CP in Changzhou was about 4,188,500 yuan, of which the direct medical burden was 205,800 yuan and the indirect economic burden was 3,982,700 yuan. The socioeconomic burden of CP in Changzhou is as high as about 2.244 billion yuan. From the EQ-5D measurement results of 55 children with CP, the average index score was 0.423, which was lower than the national general population level. The proportions of patients with CP who have problems in the five aspects of action, self-care, daily activities, pain/discomfort, and anxiety/depression are 72.73%, 81.82%, 81.82%, 83.64%, and 92.73%, respectively, which are significantly higher than those of the national general population. The average score of the Visual Analogue Scale (VAS) is 58.09, which is significantly lower than the national general population level. The only major factor affecting the quality of life of patients with CP and their families is the health status represented by the EQ-5D score. To liberate and develop the labor ability of patients and their direct caregivers through clinical treatment, rehabilitation, and special education is the most effective way to reduce the socioeconomic burden of CP. Relevant government departments should perform their duties, integrate social assistance resources, implement early intervention, and launch targeted support and assistance policy.

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