'Family Friends': An Innovative Example of Intergenerational Family Support Services

The Family Friends program trains older adults to assist and support families raising children with a chronic illness or disability After participating in the program, Omaha parents relied on professionals less and Family Friends more when coping with problems As parents relied on their Family Friends more, concerns over fatigue child's condition, and having sufficient energy decreased while time devoted to activities for personal fulfillment and overall spirits increased Respondents also reported hiding feelings more often in order to cope Parents described caring and support for themselves and their families as the two major aspects of their Family Friends experience.     

Parental views about services for children attending schools for the emotionally and behaviourally disturbed (EBD): a qualitative analysis

AIM: This study examines the views of parents of children attending schools for the emotionally and behaviourally disturbed (EBD). The study aims to gain an understanding of the journey through the educational system taken by these children and to explore their families' experience of services along the way. METHODS: Thirty parents of 25 children attending primary and secondary EBD schools in three South London boroughs took part in focus group discussions. Parents were asked about their experiences of services, including educational, health and social services, as well as how they thought services should be improved. RESULTS: Qualitative analysis identified a complex web of individual, professional and organizational factors which contributed to social exclusion of children with EBD problems and their families. These factors included children receiving inadequate education because of long periods of exclusion or inappropriate placements whilst waiting for a statement of special educational needs. Parents also felt personally socially excluded because of lack of childcare provision out of school hours. Many parents felt that their children did not fit into services and were constantly being passed on to other professionals. The analysis identified aspects of services that promote social inclusion and provide support to families, including acceptance of children into EBD schools, help from voluntary organizations and support from other parents with children with EBD problems. Parents particularly stressed the value of working in collaboration with professionals to achieve shared goals. CONCLUSION: EBD schools provide a valuable resource for parents. However parents often lack emotional and practical support in coping with their children's complex needs. Agencies need to improve communication and joint working to provide effective services for these families.     

Is parental coping associated with the level of function in children with physical disabilities?1

Objectives The objectives of this study are: (1) to describe parental coping in a cohort of children with physical disabilities (PDs); (2) to determine whether the child's level of function is associated with parental coping; and (3) to explore whether socio‐demographic factors such as child's age, maternal education and family structure are associated with parental coping. Methods Parents of 150 children with PDs were interviewed after being referred to community rehabilitation services. They answered the following: the Coping Health Inventory for Parents, the Functional Independence Measure for children (WeeFIM) and a study questionnaire that addressed socio‐demographic characteristics. Multiple linear regression models were used to determine the association between level of function and other factors and parental coping. Results Mean (SD) age of the children was 40.9 (15.2) months and 64.7% were male. Parental coping scores, measured by the Coping Health Inventory for Parents, indicated that the parents in our study found seeking out social support from community resources useful. Parents of children with moderate to severe dysfunction in mobility (WeeFIM) found coping behaviours related to communicating with the healthcare professionals regarding their child's condition useful (β coefficient, 2.07; 95% CI, 0.37, 3.78). Greater perceived usefulness of maintaining social support through community resources was associated with lower maternal education, working parents and two‐parent families. Conclusion These findings underscore the importance of helping parents of children with PDs maintain social support. It is important to help parents understand their child's medical situation, especially those whose children have more severe mobility dysfunction.     

Genetic support groups: a continuum of genetic services

Genetic counseling for parents of children with a genetic disorder is only the beginning of needed support services. One important member of the health team is the genetic support group. Within a genetic support organization, individuals and families discover that they are not alone and that they can be helped by others affected by similar genetic diagnoses. Ideally, a strong partnership between the support group members and interested health professionals will enable the organization to meet its goals. Networks, such as the Alliance of Genetic Support Groups, can help member organizations become a unified force without taking away their individual agendas.     

Parental stress,coping strategies and social support in families of children with a disability

The aim of this research was to compare parental stress, coping strategies and social support perceived in families of children with low functioning autism (n = 8), high functioning autism (n = 10), Down syndrome (n = 12) and parents of typically developing children (n = 20). Specifically, the objective was to investigate which variables (coping strategies and perception of social support available) might better predict different stress outcomes in the four groups. Parents were asked to fill in three questionnaires: Parent Stress Index, Coping Orientation to Problems Experienced and Social Support Questionnaire. Significant differences among groups in all of the variables considered were found. These results suggest the advisability of fostering functional coping strategies and social support received in families of children with disabilities, and especially in those with children with low functioning autism.     

Parent Stress and Perceptions of Language Development: Comparing Down Syndrome and Other Developmental Disabilities

This study extended research on the Down syndrome advantage by examining differences in parent stress and parent perceptions of language development between 29 parents of young children with Down syndrome and 82 parents of children with other developmental disabilities. Parents of children with Down syndrome reported lower levels of total stress, child‐related stress, and stress surrounding the parent–child interaction. Parents of children in both groups reported that they felt successful in their ability to affect their children's communication development but did differ on perceptions of difficulty such that parents of children with Down syndrome perceived their children's communication difficulties as less severe despite the children exhibiting similar language skills. Finally, after accounting for potential explanatory confounding variables, child diagnosis remained a significant predictor of parent stress and perceptions of language development. Results highlight the importance of considering etiology when assisting families raising a child with a disability.     

Voicing the lifeworld: Parental accounts of responsibility in genetic consultations for polycystic kidney disease

When parents, who are carriers of or are affected by a genetic disorder, make decisions about the health risks faced by their children, there may be multiple factors to consider. These may include the medical benefits, the parents’ own experiences of learning about their genetic status, and the future autonomy of the child. Health professionals face the challenge of explaining the possible burdens as well as benefits of testing children, while promoting open communication within families about the risk of an inherited condition. While genetic consultations do not in themselves constitute decision making, parents nevertheless account for their actions and decisions in an attempt to display parental responsibility.     

'Providing more scaffolding': parenting a child with developmental co-ordination disorder, a hidden disability

Background Few studies exist reporting the experiences of parents of children with developmental co-ordination disorder (DCD) a common disorder with a prevalence of 1.8-6%. DCD is characterized by poor motor co-ordination, not caused by a general medical condition, but significantly affecting daily living. This study explores the experiences of parents living with a child with DCD in obtaining a diagnosis; the impact of the diagnosis on parenting and the effect on parents as individuals. Methods Semi-structured interviews with a purposive sample of 15 parents of children with DCD data were recorded and then transcribed. Data were analysed using a coding framework and themes identified similar to Attride-Stirling (2001, Qualitative Research, 1, 385-405). Findings DCD was an all-encompassing condition that dominated all aspects of family life and was a 'hidden disability'. Parents were frustrated by the poor knowledge and expertise of health and education professionals working with children with DCD and the lack of good quality accessible information and support services. Parents became by default the 'expert' on DCD for schools and other services; they were advocates for DCD and their own children. They provided additional support for longer to their child with DCD and had concerns for their future. Parenting a child with DCD was frustrating, exhausting, guilt-ridden as well as rewarding. There was little available time to provide for the needs of other family members. Conclusion A better-trained, knowledgeable workforce would redress the balance for families with DCD by providing better information, support and advocacy freeing parents to parent their families.     

Coping of parents with physically and/or intellectually disabled children

OBJECTIVE: The aim was to clarify how families with physically and/or intellectually disabled children cope, what kind of coping strategies they use and how the families with good and poor coping capacities differ. METHODS: The parents of eight children (aged 8-10 years) with physical and/or intellectual disability were interviewed twice, and the data elicited in these interviews were analysed qualitatively using the grounded theory method. RESULTS: Information and acceptance, good family co-operation and social support were related to the coping strategies most frequently used. Half of the families seemed to have found successful ways of coping, whereas another half had major problems. There were five main domains in which the high- and low-coping families differed most from each other: (1) parents' initial experiences; (2) personal characteristics; (3) effects of the child's disability on family life; (4) acting in everyday life; and (5) social support. CONCLUSION: The findings can be utilized in developing supportive activities for families with disabled children. By recognizing the coping strategies used by the family, professionals and service providers can find the right ways to support their adaptation. As the role of physicians, nursing staff and other professionals in this process is very important, more attention should be attached to the collaboration between these groups, to enable them to view the situation from the perspective of the whole family.     

The impact of childhood chronic neurological diseases on Greek families

BACKGROUND: Although the impact of childhood chronic neurological diseases (CND) on patients' psychological well-being has been increasingly addressed, little attention has been given to the influence of these conditions on family members and family functioning. The purpose of the present study was to investigate the family characteristics of Greek children suffering from CND. METHODS: A total of 52 parents of children with CND were studied by using the Family Environmental Scale (FES), the Family Burden Scale, the General Health Questionnaire (GHQ-28) and a questionnaire on the knowledge of their children's illness, their coping strategies and their satisfaction with our services. During the same period, 30 parents of hospitalized children for common paediatric illnesses completed the FES. In both groups social and demographic features were registered. Appropriate statistical processes were applied to compare the above-mentioned family groups and to study the differences between the families of children with epilepsy (n=37) and the families of children with other CND (n=15). RESULTS: Parents of children with CND discuss their problems less freely, talk less openly around home, score highly on FES subscale of Conflict and, pay more attention to ethical and religious issues and values. Furthermore, the families of children with other CND were more burdened regarding the financial state and the health status of other family members in comparison with families of children with epilepsy. In addition, families of children with epilepsy were more involved in social and recreational activities, appeared to be more knowledgeable on the availability of help in critical conditions and were more satisfied with rendered medical services, in comparison with families of children with other CND. CONCLUSION: These preliminary findings provide important information concerning the special characteristics of Greek families of children suffering from CND, which may prove especially helpful in organizing specific support services.     

Professional-led versus family-led support groups: Exploring the differences

Support groups often help families cope more effectively with relatives' mental illnesses. This study examines the differences between support groups led by professionals and those led by family members, focusing specifically on group participation benefits and group content. Results indicate that participants of both professional and family-led groups reported that the groups provided them with needed information about mental illness and its treatment and that the groups improved their relationships with their ill relatives. Professional-led groups placed a greater emphasis on the relatives' problems and coping with emotions, and family-led groups placed a greater emphasis on advocacy. Suggestions are provided regarding increased collaboration between professional and family-led support groups.     

Normalization in families raising a child who is medically fragile/technology dependent and developmentally delayed

The authors combined and analyzed parent data from two field studies examining family experiences in raising children who were both medically fragile and developmentally delayed or disabled to compare these families' experiences to published attributes of normalization. Normalization is usually considered a useful conceptual and coping strategy for families of children with chronic conditions, but it has not been examined in families whose children have both complex physical and developmental disabilities. Developmental delays compounded the effects of the children's physical chronic conditions, severely affecting how families organized and managed their daily lives, with the result that families did not fit currently established attributes of normalization. Instead, parents recognized normal and positive aspects of their lives while acknowledging the profound challenges that their families faced. Parents concluded that it was possible to have a good life that was not necessarily normal by usual standards.     

Adolescent alcohol use: social determinants and the case for early family-centered prevention. Family-focused prevention of adolescent drinking.

The family plays a central role in the use of alcohol by children and adolescents, yet preventive interventions rarely focus on the family. Early drinking and much subsequent use of alcohol by children and adolescents is sanctioned and sometimes encouraged by their families. Unlike experimentation with alcohol, problem drinking is associated with low levels of family social support and with dysfunctional coping strategies of families that may lead children to use drinking as an adaptive behavior. While risk-factor research has advanced understanding of alcohol use by children and youth, the poor predictive power of individual risks has limited its contribution to successful interventions. On the other hand, protective factors, provided by relationships within and outside the family, can be preventive and health promoting. Parents influence their children''s drinking through family interactions, modeling and reinforcing standards, and attitudes that children learn and use to guide their behavior in new situations. Thus, parental influences endure. This article argues that interventions to prevent alcohol abuse should be designed to help parents to carry out their parental functions. This can be accomplished by providing social support, resources, and education for parents, as well as developing extra-familial sources of social support and socialization for children and adolescents.     

The information and support needs of Iranian parents of children with autism spectrum disorders

Internationally, increasing numbers of children are being diagnosed with an autism spectrum disorder (ASD), but there is a dearth of studies outside more affluent countries as to parents’ understanding of this condition and the support they receive. Forty-three parents were recruited from schools and clinics in Tehran and interviewed individually using a structured interview schedule. Thematic content analyses identified a lack of parental understanding about autism and its causes, along with parents’ reactions to the diagnostic process and the dearth of information available to them. The majority of parents were dissatisfied with the professional assistance provided for their children and many lacked informal support from their families. The provision of accurate information through informal parent-to-parent support seems to be the most feasible means of assisting Iranian families to adjust to having a child with ASD within the family.     

Parents’ views on how health professionals should work with them now to get the best for their child in the future

Background Pregnancy and the first years of life are important times for future child well‐being. Early identification of families and children who might be likely to experience poorer outcomes could enable health professionals and parents to work together to promote each child’s well‐being. Little is known about the acceptability and feasibility of such an approach to parents. Objective To investigate parents’ views about how health professionals should identify and work with families who may benefit from additional input to maximize their children’s future health and well‐being. Design A qualitative study using focus groups. Setting and participants Eleven focus groups were conducted with a total of 54 parents; 42 mothers and 12 fathers living in the north of England. Results Parents welcomed the idea of preventive services. They strongly believed that everyone should have access to services to enhance child well‐being whilst recognizing that some families need additional support. Making judgements about who should receive additional services based on specific criteria evoked powerful emotions because of the implication of failure. Parents projected a belief in themselves as ‘good parents’ even in adverse circumstances. Conclusions Targeted additional preventive services can be acceptable and welcome if health professionals introduce them sensitively, in the context of an existing relationship, providing parents are active participants.     

Parents’ perspectives on quality in family support programs

Support services for families who have a member with developmental disabilities are a growing component of many state mental health systems. Family empowerment is a key principle of these programs, but parents and the staff who work with them are often challenged in their efforts to have parents participate in policy development, program management, and evaluation of programs. The use of nominal group techniques is described as a means of identifying factors parents believe characterize quality family support programs. Parents’ identified factors are then compared with factors from a theoretical framework for quality. Parents stressed access to information, adherence to empowerment philosophy, and the importance of interpersonal relationships with staff. Parents placed less emphasis on factors generally found in accreditation criteria.     

How to support parents and healthcare professionals in the decision-making process of tube feeding in children?

BackgroundTube feeding in children has a severe psychosocial impact on children and their families. Parents also feel that they have limited communication with healthcare professionals (HCPs) about decision-making and the implications of tube feeding.ObjectiveThis study focussed on the parents’ experiences and expectations about tube feeding of children and a solution to improve the management and communication of it.MethodsWe applied a design thinking method in two parts. First, focus groups and individual interviews were conducted with parents of children aged 0–10 years who are or had been tube fed and HCPs. Thereafter, two sounding boards with HCPs and parents were convened to discuss improvements in the management of tube feeding.ResultsIn total, 17 parents participated in the study. Two main topics derived from the focus groups and interviews: psychosocial impact and communication with HCPs. The sounding boards (five HCPs and two parents) divided the challenges of tube feeding into three stages: the moment tube feeding is considered, the insertion of the tube in the hospital, and transfer to the domestic environment and follow-up. Interview topics were used to develop a communication sheet to support the decision process of tube feeding.ConclusionsThe empowerment of parents in the process of tube feeding is important. More attention should be paid to alternatives, consequences, and planning for the long term. The developed communication sheet offers suggestions for issues to discuss and could support communication between parents and HCPs about tube feeding.     

Family needs of parents of children and youth with cerebral palsy

Background Understanding the needs of families of children and youth with cerebral palsy (CP) is important for family‐centred services. The aims of this study were to identify: (1) differences in the number and types of family needs expressed by parents based on the age and gross motor function level of their children with CP; (2) the most frequent family needs; and (3) needs that differ on gross motor function level. Methods A total of 501 parents (77.6% mothers) of children and youth with CP completed a modified version of a Family Needs Survey and a demographic questionnaire. Children's gross motor function level was classified using the Gross Motor Function Classification System. Results Total number of family needs differed based on gross motor function level (P < 0.001) but not age. Parents of children/youth who use wheeled mobility expressed the highest number of family needs, while parents of children/youth who walk without restrictions expressed the fewest needs. Family needs for Information (P= 0.001), Support (P= 0.001), Community Services (P < 0.001) and Finances (P < 0.001) differed based on children's gross motor function level. Over 50% of parents expressed family needs for information on current and future services, planning for the future, help in locating community activities and more personal time. Parents of children and youth who use wheeled mobility were more likely to express the need for help in paying for home modifications, equipment, services and locating sitters, respite care providers and community activities. Conclusions The gross motor function of children/youth with CP has implications for collaboration with families to identify needs and co‐ordinate services. Health professionals have a role to assist families with information needs and locating community services and leisure activities. Family needs for future planning suggest that health professionals should assist families to prepare for key periods in the lives of their children with CP.     

“I Will Communicate With You,But Let Me Be In Control”: Understanding How Parents Manage Private Information About Their Chronically Ill Children

Parents have a significant role in the management of a child’s chronic condition. Parents are often the only consistent individuals managing a child’s health across his or her childhood and adolescence (e.g., present for all appointments and medical procedures). Many of the responsibilities required of parents involve communication work, where parents must strategically and actively design messages as they interact with medical professionals, other family, and friends. Using communication privacy management theory, we analyzed interviews conducted with 35 parents to understand the motivations and strategies involved in their regulation of information about their child’s chronic condition. These findings have important practical implications because parental involvement in a chronically ill child’s care has direct effects on familial adaptation and adjustment.     

Genetic Support Groups:

Genetic counseling for parents of children with a genetic disorder is only the beginning of needed support services. One important member of the health team is the genetic support group. Within a genetic support organization, individuals and families discover that they are not alone and that they can be helped by others affected by similar genetic diagnoses. Ideally, a strong partnership between the support group members and interested health professionals will enable the organization to meet its goals. Networks, such as the Alliance of Genetic Support Groups, can help member organizations become a unified force without taking away their individual agendas.