Table 1 showed the characteristics of children and parents. The age of the children in this study ranged from 3 to 16.4 years, with the mean of age of 8 years. There were slightly more boys (51%) than girls (49%). The length of time after diagnosis ranged from 3 to 60 months, with the mean time of 15.5 months. The age of parents ranged from 21 to 58 years, with the mean age of 37.9. The majority of respondents were women (83.7%) or mothers of the children. Nevertheless, there were also some males or fathers acted as the primary caregivers of children (16.3). Most parents did not work (64.4%) as they were housewives. The majority of parents had primary education level (60.6%) with income less than Rp. 1,500,000 every month. The majority of parents are married (86.5%), and only a small percentage of parents were single parents (13.5%).
Background: Parent’s reactions, in the moment when they find out that their child is with developmental disabilities, are absolutely individual. A lot of parents need months, while some of them need years to face the fact that their child is with developmental disability. The state and the crisis that arise are very hard to be prevented; however they could be overcome by a good professional help and support. Aim: The aim of the present research study is to examine the family stress level that the parents of these children experience as well as the socialsupport that they receive by the family and the local community. Methodology: Three hundred parents of children with Intellectual disability (ID), Cerebral palsy (CP) and normal healthy were taken from Indian institute of Cerebral Palsy and handicapped children, Sigra, Varanasi. Only parents of children between 0-18 years were included in this study. Result: Results show that the family stress is much more on parents of ID and CP as compared to healthy children. Another finding also revealed that low level of socialsupport was found among parents of category children as compared to parents of healthy children. Conclusion: This result convincingly exhibited that the maximum stress producing events for any parents is that point of time when they realize that their child is disabled.
Background: Having a child with acute lymphoblastic leukemia represents challenges to the family which may impact their quality of life. In such cir- cumstances, parents use various coping strategies to face this stressful situa- tion, and understanding the relation of coping strategies on quality of life among parents of children with acute lymphoblastic leukemia may provide professionals with ideas about how to support them which in turn may im- prove their quality of life. Aim: The aim of the present study was to assess the correlation between coping strategies and the health related quality of life of parents whose children are suffering from acute lymphoblastic leukemia. Study design: A cross-sectional design using guided self-administered ques- tionnaire by a single researcher was used. Methods: A universal sample con- sisted of 299 parents of children with acute lymphoblastic leukemia (ALL) was recruited from Hospital Universiti Kebangsaan Malaysia and Kuala Lumpur Institute Pediatrics. The response rate was 98%. The data collection tools were WHOQOL BREF which is the World Health Organization Quality of Life shorter version and Brief COPE questionnaires. Results: The results revealed that half of the parents perceived their health related quality of life as good. The highest scores for parents were reported on the social relationship do- main meanwhile the lowest were reported on the environmental health do- main. In regard to the coping strategies, it was found that religion was most frequently used while humor was the least to be used. Moreover, there was a significant positive relationship between quality of life of the parents and problem-focused coping style and a significant negative relationship with emotion-focused coping style. Conclusion: On the basis of the finding of present study, an appropriate intervention could be design to include program that promote the use of problem-focused copings such as active coping and planning and discourage the use of emotion-focused copings such as self- blaming to enhance parents’ health related quality of life.
Some might argue that many of the suggestions made by these parents should be intuitive to physicians al- ready. However, these suggestions come from 140 par- ents who reported on their actual experience of ICCs that were led by 65 different physicians at 6 hospitals that routinely treat children with acute leukemia. There- fore, these recommendations generally are not being put into practice during the informed consent process. Phy- sicians may find it challenging to implement some of these parental suggestions, especially those that require more discussion and decision-making time. The parents developed the PAGIC Model of Informed Consent to alleviate these challenges by providing an organizational structure that enhances the quality and efficiency of the communication process.
In a study by Melman et al (1998) a qualitative research method was used because this method enables a description of what it is like to live through childhood cancer in all its aspects. Parents whose child survived cancer were interviewed in depth about the late consequences of the disease. Results indicated that parents experienced changes of a definitive and long-lasting nature as a result of cancer in their child. In spite of the child's survival, feelings of loss and perseveration of problems prevailed. To cope with late sequelae, characteristic strategies were identified - including the position parents adopt a life or death perspective on the final outcome of the disease, the extent to which they express emotions, and the use of family planning and parenting behavior. Coping strategies used had not only an effect on the individual parent but also on the other family members. Parents who used coping strategies in a non extreme way appeared to be functioning well.
friendships, and are more likely to be bullied compared to typically developing children (Maino, Normand, Salvas, Moullec, & Aime, 2016; Petrina et al., 2013). Parents can experience stress from helping their children manage relationships with other children (Weiss, Cappadocia, Tint, & Pepler, 2015). More notably, child challenging behaviour and child disability severity greatly affect parents, and were selected as measures of the stressor in this study (see sections below for more details). The other factors described were beyond the scope of the present study and therefore were not included in analyses (e.g., child adaptive behaviour, school transitions, child social functioning). They were reviewed to provide the reader with additional context about how raising children with autism can be stressful for parents. There is less research support for these factors as they relate to family quality of life. For example, child challenging behaviour has been found to be a stronger predictor of parental stress and family quality of life for parents of children with autism compared to disability severity and child age (McStay &
The mothers’ quality of life was poor, which may be due to many conflicts, such as family income, the level of parents’ dissatisfaction with marital life, the level of education, and dissatisfaction with family cooperation. To increase their quality of life, social conflicts between families should be resolved by the responsible authori- ties through appropriate policies, precise planning, and holding training classes for the families and providing support from insurance organizations. It is also suggest- ed that nurses, as the most critical pillars of care, identify vulnerable families, and introduce them to private and governmental supportive institutions.
The care provided by both father and mother as an informal primary caregiver is not only limited to fulfilling the needs of daily activities, but more complex than that. Caregiver has a heavy responsibility in taking care of patients such as caring for patients, financing for treatment and providing emotional support (Hudson et al., 2010). In addition, the family has a role as an advocate, medical and technical counselor. Parents learn to identify and see the side effects of treatment received by their children. The dilemma of parents involved in child care is when parents provide care that is often painful and frightening for children, but on the other hand parents want to entertain, protect and keep children from suffering and pain (Jones, 2012). In the care process, the caregiver's responsibilities are carried out over a long period of time which can be a burden for the caregiver. The study revealed that the consequences of prolonged care in children with cancer caused a negative impact on the caregiver, which caused stress and decreased quality of life (Litzelman, Catrine, Gangnon, & Witt, 2011). Quality of life is a condition where an individual is in a state of prosperity. Quality of life is a subjective matter where everyone has a different quality of life. The caregiver's quality of life in cancer patients can change due to a new role in caring for cancer patients, lack of socialsupport, problems with work and lack of time to gather with family (Duci & Tahsini, 2012).
requires multifaceted and diverse forms of assistance. The most important limitation of this study is a relatively small group of examined fathers, which makes it im- possible to perform analyzes with regard to the gender variable. Nevertheless, the results obtained allow for the formulation of practical conclusions regarding the support of parents of children with ASD and children with ID. It is advisable to sensitize parents to the impor- tance of socialsupport and help in building resources, including informing about possible available forms of assistance in the immediate environment. These goals could be implemented during workshops conducted by a psychologist or a social worker. Another important ac- tion is increasing communication skills of parents, in- cluding expressing their emotions and asking for help. Finally, support groups from the parents themselves, which can provide emotional and informational support, play an important role. It is worth initiating such activi- ties at foundations or associations that care for the fam- ily of people with neurodevelopmental disorders.
emphasized that vital for coping well with stressors in life is acquiring a sense of coherence, an experience that events are comprehensible, meaningful, and manageable. To grow up with a parent with a dementia disorder is an unexpected and non-normative youth experience; it is not easy to understand, accept, or handle. Even if the experience of becoming mature and an adult early on might provide coping resources, it is reasonable to expect that some children will beome vulner- able later in life. A consistent finding, and one that is in line with the buffering hypothesis, 45 is that socialsupport modifies
Several researchers identified the importance of social supports in assisting families to cope with stress (Able-Boone & Sandall, 1990; Colletta, 1981; Jones, Angelo, & Kokoska, 1998; Miner, 1986; Naseef, 1989; Roberts, 1986). Able-Boone and Sandall (1990) interviewed families and found that families benefited if their specific support needs were met. Colletta (1981) found that emotional support to mothers was contingent upon the person who provided the support. The effect of this support was then found to affect their relationships with others and with their child. Jones et al. (1998) found that a variety of social supports were perceived as helpful to mothers and fathers of children who used augmentative and alternative communication. Some of the supports identified were children’s school staff, spouse’s parents, professionals, and own spouse. Miner (1986) examined the role of socialsupport in alleviating stress in 65 parents of children who were hyperactive. The findings indicated that mothers used social supports more than fathers, socialsupport served as a coping mechanism, and socialsupport buffered the impact of perceived family depression.
Chiu believed that from all the dimensions of socialsupport, emotional socialsupport from family is the supporting core for growth and advancement in any activity . Lundberg mentioned that most of the students are seeking emotional support . So it could be concluded that family, compared to friends and relatives, is prioritized as the most important source of receiving socialsupport from family members. In the present study also, from all the dimensions of socialsupport, the emotional socialsupport was significantly improved after the intervention [p=0.009]. Although in this study the effect of the intervention on nutritional behaviors has not been assessed, but considering the effect of the intervention parents’ socialsupport it could be predicted that the intervention might also improve the nutritional behaviors. The study of Rich showed that educating the parents is the required tool for creating healthy meals in the family and providing a successful positive environment for educating healthy eating habits to the children; if eating at home and preparing the food at home would remain as the constant priority at home and students perceive support from their parents .
school children aged 10 to 12 years from three schools in Kota Kuala Muda Kedah. These schools were purposely chosen since they were situated in one of the hardest hit areas of the country. Parents of primary school children in standard four to six were informed of the study and consent from these parents was obtained. Children whose parents consented to participate by signing the consent forms were included in the study. Both children and parents provided data used in this study. For children, data was collected through guided self-administered questionnaires, where questions were read to them in class by the researcher. Questionnaires for parents were given to the children to be taken home for self-administered completion. Children provided information on academic performance, socialsupport, specific exposure to tsunami and symptoms of PTSD, while parents reported on questions on demographic profile and their children’s behavioral problems as well as family life stressors.
Another study of 46 children following Hurricane Floyd, socialsupport was found to be a significant contributor to positive outcomes (Cryder, Kilmer, Tedeschi and Calhoun, 2006). Also, borrowing from the adult literature, it was shown that those who had experienced lower levels of resource loss, along with higher levels of socialsupport, exhibited higher levels of resilience following the terrorist attacks on September 11, 2001 (Bonanno, Galea, Bucciarelli and Vlahov, 2007). Looking at specific types of socialsupport, earlier studies have indicated that parent support is linked to decreased levels of aggression and violent behavior (Blum, Ireland and Blum, 2003) and may counter the effects of stress on adolescent aggression and violent behavior (Brookmeyer, Henrich and Schwab-Stone, 2005). Wolchik et al., (2008) further examined post traumatic reactions in a sample of 50 bereaved adolescents. In this study, the researchers also measured socialsupport from four different sources: parents, adults other than parents, peers, and siblings. The studies confirmed that the higher the level of socialsupport, the lower the levels of PTSD symptoms. Siblings as well play an important role as far as socialsupport is concerned. In their study, Howe, Aquan-Assee, Bukowski, Lehoux and Rinaldi, (2001) found warmth and intimacy in “siblingship” to be associated with emotional understanding and self-disclosure in middle childhood and these factors served as a source of emotional support in early adolescence during extremely stressful situations. On the contrary, negative sibling relationship was found to be associated with adjustment problems (Deater-Deckard, Dunn and Lussier, 2002), anxiety (Fox, Barrett, and Shortt, 2002) and depression (Kim and Cicchetti, 2003) both in childhood and adolescence. A section of this study examined socialsupport offered by parents and siblings and its effect in dealing with PTSD in children who were exposed to post election violence. According to Ozer and Weinsten, (2004), socialsupport from school personnel can also play a protective role for children and youth. Schools serve as an important context for child development and often function as a place of relative safety within violent communities. Feelings of connectedness to school have been found to positively influence adolescent adjustment (Resnick et al., 1997) as well as to decrease aggressive behavior (Haynes, Emmons and Ben-Avie, 1997). Internally displaced children in Eldoret were taught in makeshift schools at the IDP camps. Socialsupport in schools during this period and after resuming to school will be studied in order to shed light on the availability and effect of socialsupport on PTSD in these children who were exposed to PEV.
if there was some accountability piece to it, like if we came back, and like, you just, like with the phone calls [that children in social skills groups do], if nothing else, we had to let you know, “hey yeah, we did it this week, [or] no we didn’t.” Theme Five: Issues of feasibility and acceptability in designing a support group utilizing mindfulness. In describing areas of need, parents contributed to an understanding of beneficial components of a support group, such as instrumental support for resource identification and management as well as emotional support from people who “get it”- namely parents in similar situations and community organizations with adequate resources and understanding. Parents also indicated a need for strategies for managing stressors such as their child’s behavior, difficulty communicating with others about their child’s situation, and many daily demands.
Interventions varied, but typically involved outreach to improve behavioural problems, support to find housing, and/or the provision of special residential accommodation. Data was collected from 256 participating families. The review reports that 85% of families ceased to receive anti-social behaviour complaints completely or that these were reduced to a level that did not jeopardise their tenancy. Project workers assessed that children’s mental health improved in 40% and physical health in 53% of cases. However, these findings are based on 15% of the overall sample and therefore no robust conclusions can be drawn about the generalisability of these (Nixon et al. 2006).
18 with pupils and parents, including face-to-face meetings, phone calls, texting and written forms (Olmsatead 2013). One interesting innovation here is the use of ‘life style’ televisions, screens located throughout the public spaces within the school, which provide information and models of good life style practices or as the Head of Religious Education stated “(they) pump in information on keeping healthy, looking after yourself”. Much of this contact and more generally pupil behaviour and progress are recorded on the school computer system creating a bank of information to which staff have access. Staff were to report all behavioural issues and incidents that took place in their presence as well periodically reporting on the progress of all children. This network generated varying degrees of formality and incorporated regular interactions between support teachers and parents and pupils within the home. In some ways the success of this network generates a sophisticated form of social control in the way that children’s routine behaviour inside and outside of school and by implication the dispositions of their parents are carefully documented, evaluated and categorised (Foucault 1979). Nevertheless, this network puts the school in a stronger position to support children’s learning. Moreover, within this network school staff are able to connect with parents and tackle what they see as critical ‘barriers to learning’.
The service of Social Worker in comparison with other professions is so different. Social Workers have greater responsibility in the process of developing the lives of the Autistic child. Hand by hand support of the social worker can contribute to the welfare of the Autistic child. From this research , we conclude with an suggestion of incorporating separate Autism cure center and some special schools for autistic child. The Government of Tamil Nadu can also try to increase the number of social workers to take care of the Autistic child.
The results of previous studies on thalassemic children and other similar genetic disorders indicate that the con- sanguineous marriages are more prevalent among people in certain societies, most of which belong to developed and less developed countries. These people are faced with varying degrees of social and economic problems and have certain views about consanguineous marriage. Their problems differ depending on their education level, economic status, place of residence and access to treatment facilities and other factors. When these people migrate and settle in developed countries, their problems are decreased, which is indicative of better living conditions in new places. According to considerable challenges facing the parents of children with thalassemia, authorities and health and social systems should give more attention to them so that they can cope with unwanted situ- ations and provide necessary treatment measures for their sick children. Nevertheless, these problems differ in various countries, but the problems are the same. Themes obtained in the present study were extracted from experiences of a limited number of participants; therefore, it is difficult to generalize them to other societies. However, these findings can be valuable for the managers of treatment and support organizations in the planning process.
The AHDC policy review (2007) identified a lack of reliable quantitative data to help with effective planning of childcare for disabled children. Data of this kind is invaluable to local authorities who can use it to identify specific groups within the disabled population that are most in need and to highlight gaps in current service provision. To date the Childcare and Early Years Survey of Parents (2004-2009) has provided the main source of quantitative data on family take-up and experiences of childcare for the general population. Trends over time have shown that there has been a substantial growth in the use of formal childcare over the last decade. The policy agenda of the previous Government’s ten-year strategy (HM Treasury 2004), has been the main driver behind this change, with increase in take-up of childcare partly attributed to the introduction of free part-time early education for three and four year olds. This early years initiative aimed to bring about improvements in children’s outcomes benefiting learning, improving social skills, and helping to break cycles of poverty for disadvantaged children. Other developments in childcare provision also occurred over this time period to support government policy aimed at facilitating parental employment. This included expansion of childcare provision aimed at under three’s (e.g. daycare settings) as well as wraparound provision and after-school clubs.