scholarly journals The quality of life in girls with Rett syndrome

2016 ◽  
Vol 8 (1) ◽  
pp. 5-9 ◽  
Author(s):  
Lucia Parisi ◽  
Teresa Di Filippo ◽  
Michele Roccella
Keyword(s):  
Quality Of Life ◽  
Rett Syndrome ◽  
Research Quality ◽  
Entire Family ◽  
Severe Intellectual Disability ◽  
The Family ◽  
Common Causes ◽  
The Central Nervous System ◽  
Considerable Impact

Nowadays, quality of life is receiving an increasing attention in all scientific areas. Rett syndrome (RTT) is a rare neurological development, affecting mainly females. The congenital disease affects the central nervous system, and is one of the most common causes of severe intellectual disability. The aim of our study is to evaluate the effect of RTT on the quality of life of people who are affected. Both parents of 18 subjects, all female, diagnosed with RTT, took part in the research. Quality of life was assessed using the Italian version of the Impact of Childhood Illness Scale. This scale consists of 30 questions that investigate the effect of illness on children, parents and families. For each question, the parent was asked to rate two variables: frequency and importance. Another questionnaire was administered to obtain medical history, diagnostic and therapeutic data of the persons with RTT. Our data show that RTT has a considerable impact on both the child's development and the entire family. Parents' answers demonstrated that their child's illness had consequences for the child and how the family coped with it. For this reason, attention should be directed at psychological and social aspects, as well as attitudes, manners, reactions and effects such disturbances can have on the entire family.

scholarly journals The quality of life in girls with Rett syndrome

2016 ◽  
Vol 8 (1) ◽  
Author(s):  
Lucia Parisi ◽  
Teresa Di Filippo ◽  
Michele Roccella
Keyword(s):  
Quality Of Life ◽  
Rett Syndrome ◽  
Research Quality ◽  
Entire Family ◽  
Severe Intellectual Disability ◽  
Common Causes ◽  
The Central Nervous System ◽  
Considerable Impact ◽  
The Impact

Nowadays, quality of life is receiving an increasing attention in all scientific areas. Rett syndrome (RTT) is a rare neurological development, affecting mainly females. The congenital disease affects the central nervous system, and is one of the most common causes of severe intellectual disability. The aim of our study is to evaluate the effect of RTT on the quality of life of people who are affected. Both parents of 18 subjects, all female, diagnosed with RTT, took part in the research. Quality of life was assessed using the Italian version of the Impact of Childhood Illness Scale. This scale consists of 30 questions that investigate the effect of illness on children, parents and families. For each question, the parent was asked to rate two variables: frequency and importance. Another questionnaire was administered to obtain medical history, diagnostic and therapeutic data of the persons with RTT. Our data show that RTT has a considerable impact on both the child’s development and the entire family. Parents’ answers demonstrated that their child’s illness had consequences for the child and how the family coped with it. For this reason, attention should be directed at psychological and social aspects, as well as attitudes, manners, reactions and effects such disturbances can have on the entire family.

scholarly journals Clinical presentation of Rett syndrome in relation to quality of life and family functioning

2021 ◽  
Vol 49 (4) ◽  
pp. 030006052110077
Author(s):  
Anna Rozensztrauch ◽  
Agnieszka Sebzda ◽  
Robert Śmigiel
Keyword(s):  
Quality Of Life ◽  
Family Functioning ◽  
Rett Syndrome ◽  
Family Relationships ◽  
Clinical Presentation ◽  
Correlation Study ◽  
Family Impact ◽  
Cross Sectional ◽  
The Family

Objective Rett syndrome (RTT) is a chronic condition that manifest in young children, with concomitant comorbidities such as respiratory problems, scoliosis, epilepsy, and malnutrition, which may affect children’s quality of life (QoL) and family functioning. The objective of this cross-sectional descriptive correlation study was to understand the clinical presentation of RTT in relation to QoL and family functioning. Methods We included 23 parents of children with RTT. In this study, we used the PedsQL™ Family Impact Module, the Pediatric Quality of Life Inventory 4.0 generic core scales (PedsQL™ 4.0), and an author-designed questionnaire to assess QoL and family functioning. Results A significant relationship was observed between PedsQL™ 4.0 score and child’s age in the physical functioning dimension. Children aged 8 to 12 years demonstrated significantly higher scores than those in the other age groups. Malnutrition in the child significantly affected functioning of the family in the family relationships dimension. Children receiving 5 hours of rehabilitation treatment a week had significantly higher QoL in the school functioning dimension. Conclusions QOL in children with RTT, as perceived by their parents, is reduced. RTT has a significant negative correlation with family functioning.

scholarly journals “Living an Obstacle Course”: A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome

2018 ◽  
Vol 16 (1) ◽  
pp. 41 ◽  
Author(s):  
Domingo Palacios-Ceña ◽  
Pilar Famoso-Pérez ◽  
Jaime Salom-Moreno ◽  
Pilar Carrasco-Garrido ◽  
Jorge Pérez-Corrales ◽  
...  
Keyword(s):  
Rett Syndrome ◽  
Economic Resources ◽  
Care Process ◽  
Everyday Activities ◽  
The Family ◽  
Considerable Impact ◽  
Field Notes ◽  
Depth Interviews

Background: Rett syndrome has considerable effects on the quality of life of affected children, impairing everyday activities and potentially impacting the life of both the caregivers and the family. Our aim was to explore the experiences of a group of caregivers of children with Rett syndrome with regards to living and caring for their children. Methods: We conducted a qualitative case study to examine how 31 caregivers of children with Rett syndrome perceived living with their children. Data were collected through in-depth interviews, focus groups, researchers’ field notes and caregivers’ personal documents. A thematic analysis was performed following the Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline. Results: The experience of being a caregiver of a child with Rett syndrome was expressed as being akin to an “obstacle course”, and was described via three main themes: (a) looking for answers, with two subthemes identified, namely ‘the first symptoms’, and ‘the need for a diagnosis’; (b) managing day to day life, with the subthemes ‘applying treatments’, and ‘learning to care’; and (c) money matters. Conclusions: Rett syndrome has a considerable impact on the lives of the caregivers involved. The health-care process and the management of economic resources are some of the aspects highlighted by caregivers. These findings have important implications for the planning of support services, health systems and health policies.

HUBUNGAN PERAN FAMILY CAREGIVER TERHADAP QUALITAS HIDUP LANSIA

2019 ◽  
Vol 11 (1) ◽  
pp. 51-56
Author(s):  
RIANI PRADARA JATI ◽  
Sekar Farah Nabila
Keyword(s):  
Quality Of Life ◽  
Family Caregiver ◽  
Random Sampling ◽  
Simple Random Sampling ◽  
The Elderly ◽  
Chi Square ◽  
The Poor ◽  
The Family

  Penempatan peran yang baik bagi Family Caregiver sangatlah membantu lansia dalam meningkatkah qualitas hidupnya, meningkatkan motivasi dalam menjalankan hidup Penelitian ini bertujuan Mengetahui hubungan peran Family Caregiver dalam pemenuhan qualitas hidup bagi lansia di Kelurahan Langenharjo Kabupaten Kendal. DesainPenelitianDeskriptifKorelasional menggunakan pendekatan Krosectional,tehnikSamplingStratified Simple Random Sampling dengan karakteristik heterogen, dari populasi mempunyai hak yang sama untuk diseleksi sebagai sampel teknik undianPengambilan data dengan menggunakan kuesioner yang telah diuji validitas dan reliabilitasnya. Uji statistik Chi-square, dengan taraf signifikasi 5%jumlah sampel pada penelitian ini 70 sampel pada Family Caregiver dari 213 populasi yang ada. Hasil penelitian dari 70 responden didapatkan Peran Family Caregiver tidak baik dengan qualitas hidup tidak baik 33 (47,1%), sedangkan Peran Family Caregiver kurang baik dengan qualitas hidup lansia baik 3 (4,3%). Untuk distribusi Peran Family Caregiver kurang baik dengan qualitas hidup lansia tidak baik sebanyak 6 responden (8,6%) sedangkan untuk distribusi Peran Family Caregiver kurang baik dengan qualitas hidup lansia baik sebanyak 23 responden (32,9%). Terakhir, untuk distribusi Peran Family Caregiver baik dengan qualitas hidup lansia tidak baik didapatkan hasil 2 responden (2, 9%) sedangkan untuk distribusi Peran Family Caregiver baik dengan qualitas hidup lansia baik didapatkan hasil 3 responden (4,3%)Menunjukkan nilai ρ value 0,001 (ρ < 0,05) berarti ada hubungan antara dukungan keluarga dengan kepatuhan lansia dalam keikutsertaan posyandu lansia. Disarankan kepada semua Family Cregiver lansia untuk mampu memahami pentingnya perhatian, dukungan bagi lansia dalammeningkatkan qualitas hidup yang lebih baik bagi lansia.   Kata kunci : Peran family caregiver, qualitas hidup, lansia.   ABSTRACT Placement of a good role for Family Caregiver is very helpful for the elderly to improve their quality of life, increase motivation in living life Research Objective: To know the relationship between the role of Family Caregiver in fulfilling quality of life for the elderly in Langenharjo Village, Kendal Regency. Descriptive Correlational Research Design uses a cross sectional approach, Sampling Stratified Simple Random Sampling technique with heterogeneous characteristics, from the population has the same right to be selected as a sample lottery technique Retrieving data using a questionnaire that has been tested for validity and reliability. Test Chi-square statistics, with a significance level of 5% the number of samples in this study 70 samples on the Family Caregiver from 213 populations. Results of the Study Of 70 respondents found the role of Family Caregiver was not good with poor quality of life 33 (47.1%) , while the role of the Family Caregiver is not good with the quality of life of a good elderly 3 (4.3%). For the distribution of the role of Family Caregiver is not good with the quality of life of the poor family as many as 6 respondents (8.6%) while for the distribution of the Role of Family Caregiver is not good with the quality of life of good elderly as many as 23 respondents (32.9%). Finally, the distribution of the Role of Family Caregiver with good quality of life for the poor is obtained by 2 respondents (2, 9%), while the distribution of the Role of Family Caregiver with good quality of life for the elderly is obtained by 3 respondents (4.3%). 0.001 (ρ <0.05) means that there is a relationship between family support and the compliance of the elderly in the participation of the elderly posyandu. It is recommended to all elderly Cregiver families to be able to understand the importance of attention, support for the elderly in improving the quality of life better for the elderly   Keywords: Role of Family Caregiver, Quality of Life, Elderly

Quality of Life (QOL) of Balinese Women Working in Spa Tourism Industry

2015 ◽  
Vol 1 (1) ◽  
pp. 13
Author(s):  
Putu Sucita Yanthy ◽  
Luh Gede Leli Kusuma Dewi ◽  
W. Citra Juwitasari
Keyword(s):  
Quality Of Life ◽  
Tourism Industry ◽  
Family Needs ◽  
Interesting Phenomenon ◽  
Tourist Destinations ◽  
Foreign Countries ◽  
The Family ◽  
Two Factors ◽  
Material Factor

Bali is one of spa tourist destinations having various categories of spas and spa treatments, and the most important is the spa therapists. Spa development becomes an interesting phenomenon to be studied when it is associated with an involvement of Balinese women as spa therapists in foreign countries. The world’s demand for Balinese spa therapists has become the motivation of women to work in this area. The work and life of Balinese spa therapists while they are working in foreign countries serve as parameters to know their quality of life, and these parameters are also the main focus of this study. Through in-depth interviews and questionnaires distributed to 20 therapists it was found out that 85 percent of them have revealed an improvement in their quality of life that is influenced by two factors: the material and intimacy factors. The material factor in question refers to the economic improvement of the family as they could earn enough income to cover their family needs. The intimacy factor in question refers to closeness and a sense of solidarity fostered while they are working abroad and the relationship within the family. This study concludes that the most important part of the development of spa in Bali is its female Balinese spa therapists due to the image that Balinese women working as spa therapists are loyal, hard-working and honest making them in demand among tourists who are seeking spa treatments. Being a spa therapist can improve their quality of life, which means that subjectively both material and intimacy factors are the aspects that affect the quality of life of the Balinese spa therapists.

scholarly journals The Association of Sources of Support, Types of Support and Satisfaction with Support Received on Perceived Stress and Quality of Life of Cancer Patients

2021 ◽  
Vol 20 ◽  
pp. 153473542199490
Author(s):  
Iván Ruiz-Rodríguez ◽  
Isabel Hombrados-Mendieta ◽  
Anabel Melguizo-Garín ◽  
Mª José Martos-Méndez
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Cancer Patients ◽  
Perceived Stress ◽  
Emotional Support ◽  
Multidimensional Analysis ◽  
Informational Support ◽  
Cancer Data ◽  
The Family

Introduction: The aim of the present study is to carry out a multidimensional analysis of the relationship of social support with quality of life and the stress perceived by cancer patients. Methods: The participants were 200 patients with cancer. Data was gathered on sociodemographic characteristics, health, quality of life, social support and perceived stress. Results: Frequency of and satisfaction with different sources and types of support are related positively with improvement of quality of life and negatively with perceived stress. The emotional support from the partner and the emotional and informational support from the family are significant predictors of quality of life. Emotional support from the family reduces patients’ perceived stress. Satisfaction with emotional support from the partner and with the informational support from friends and family increases quality of life. Satisfaction with emotional support from the family and with informational support from friends decreases patients’ perceived stress. Instrumental support and support provided by health professionals are not good predictors of quality of life and perceived stress. Satisfaction with the support received is more significantly related with quality of life and stress than the frequency with which the sources provide support. Conclusions: These results have important practical implications to improve cancer patients’ quality of life and reduce their perceived stress through social support. Designing intervention strategies to improve satisfaction with the support provided to patients by their closest networks results in a global benefit for the patient’s quality of life.

scholarly journals Assessing Time of Eating in Commensality Research

2021 ◽  
Vol 18 (6) ◽  
pp. 2941
Author(s):  
Henrik Scander ◽  
Maria Lennernäs Wiklund ◽  
Agneta Yngve
Keyword(s):  
Quality Of Life ◽  
Systematic Reviews ◽  
Time Use ◽  
Scoping Review ◽  
Search Term ◽  
Working Population ◽  
Nutritional Health ◽  
The Family ◽  
Use Studies

Commensal meals seem to be related to a better nutritional and metabolic health as well as an improved quality of life. The aim of this paper was to examine to what extent research was performed using the search term commensality related to assessment of timing of meals. A scoping review was performed, where 10 papers were identified as specifically addressing the assessment of timing of commensality of meals. Time use studies, questionnaires, and telephone- and person-to-person interviews were used for assessing meal times in relation to commensality. Four of the studies used a method of time use registration, and six papers used interviews or questionnaires. Common meals with family members were the most common, and dinners late at night were often preferred for commensal activities among the working population. In conclusion, the family meal seemed to be the most important commensal meal. It is clear from the collected papers and from previous systematic reviews that more studies of commensal meals in general and about timing aspects in particular and in relation to nutritional health are essential to provide a solid background of knowledge regarding the importance of timing in relation to commensal meals.

scholarly journals The quality of life in the relatives of Wolfram’s syndrome patients

2014 ◽  
Vol 5 (1) ◽  
pp. 89-97
Author(s):  
Gema Esteban ◽  
Mónica Ruano ◽  
Isabel Motero
Keyword(s):  
Quality Of Life ◽  
Diabetes Mellitus ◽  
Genetic Basis ◽  
Clinical Symptoms ◽  
Daily Life ◽  
Wolfram Syndrome ◽  
Clinical Aspects ◽  
The Family ◽  
Low Prevalence

Wolfram Syndrome (WS) is a rare disease (RD) with an estimated prevalence of 1/770,000 inhabitants. It is considered a multisystemic, chronic and progressive disease.WS diagnosis implies devastating consequences at physical, educational and emotional levels. WS is also known by the acronym DIDMOAD, derived from the first letters of the main clinical symptoms: Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy, and Deafness. Rare diseases are characterized by their low prevalence and the lack of knowledge on the pathophysiology and treatment of them. Interestingly, around 80% of RD have a genetic basis, and this fact causes doubts and uncertainties in the couples, about the idea of having another child. The existence of a RD in a family, alters significantly the relationships and the quality of life within the family. The present work remarks the huge value of psychosocial aspects in order to pay an adequate attention to these patients, not only taking care of the clinical aspects. The main purpose of this study has been to ascertain the quality of life of Wolfram’s syndrome affected patients, and its impact in the daily life.

Family burden and quality of life of mothers of children and adolescents with mental retardation or borderline mental capacity

2016 ◽  
Vol 33 (S1) ◽  
pp. S192-S192
Author(s):  
L. Utas Akhan
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
Mental Capacity ◽  
World Health ◽  
Family Burden ◽  
Disabled Children ◽  
World Health Organization Quality ◽  
Significant Difference ◽  
The Family

IntroductionStudies have found that the cognitive function levels of intellectually challenged children add a burden to the family and affect quality of life.ObjectivesThe purpose of this study was to determine the family burden felt by mothers of children, ages 6–16, whose mental capacity evaluation indicates an IQ of 35–79 to explore the mother's quality of life and discover the factors that yield an impact in this context.AimsThe main objective of this study therefore was to ascertain the family burden and quality of life experienced by the parents of children with mentally retarded or borderline mental capacity.MethodsThe WISC-R test was used in the research to determine the intellectual capacity of children, 6–16 years of age. The sample comprised 131 children and adolescents between the ages 6–16 with IQs in the interval of 35–79 and their mothers. The parents accompanying their children were assessed using the Family Burden Assessment Scale, the World Health Organization Quality of Life instrument and a sociodemographic questionnaire that was filled out during face-to-face interviews.ResultsThe quality of life of the mothers was found to be average. At the same time, as the IQ level of the children went up, the less the mothers felt they were under a family burden. It was seen that the mothers experienced the most difficulty in the domains of “perception of inadequacy” and “emotional burden.”ConclusionMothers with intellectually disabled children need psychosocial support. Providing all members of the family with counseling services to help them cope with the issues and responsibilities involved in the care of disabled children may make a significant difference in quality of life.Disclosure of interestThe author has not supplied his/her declaration of competing interest.

Nordic retirement contracts and the economic situation of widows

2006 ◽  
Vol 21 (3) ◽  
pp. 383-418 ◽  
Author(s):  
BEATRICE MORING
Keyword(s):  
Quality Of Life ◽  
Eighteenth Century ◽  
Economic Status ◽  
Economic Situation ◽  
Standard Of Living ◽  
The Family ◽  
Early Eighteenth Century ◽  
The Right

The aim of this article is to explore the economic status and the quality of life of widows in the Nordic past, based on the evidence contained in retirement contracts. Analysis of these contracts also shows the ways in which, and when, land and the authority invested in the headship of the household were transferred between generations in the Nordic countryside. After the early eighteenth century, retirement contracts became more detailed but these should be viewed not as a sign of tension between the retirees and their successors but as a family insurance strategy designed to protect the interests of younger siblings of the heir and his or her old parents, particularly if there was a danger of the property being acquired by a non-relative. Both the retirement contracts made by couples and those made by a widow alone generally guaranteed them an adequate standard of living in retirement. Widows were assured of an adequately heated room of their own, more generous provision of food than was available to many families, clothing and the right to continue to work, for example at spinning and milking, but to be excused heavy labour. However, when the land was to be retained by the family, in many cases there was no intention of establishing a separate household.

Sign in / Sign up

Export Citation Format

Share Document