Cohesion and parents' social relations in families with a child with disability or chronic illness.

We studied how a child's physical or intellectual disability or diabetes affected family cohesion, the parents' social life, work and leisure-time activities, and whether there was any association between the parents' social relations and family cohesion. The parents of 89 children aged 12-17 years returned a questionnaire and were interviewed by a social worker. Family cohesion increased in all the groups by an average of 27%. The effect was smallest in the families of children with diabetes, whereas in the families with intellectual or physical disability family cohesion increased from 6 to 13 times more often compared to the families of children with diabetes. The increased family cohesion was not associated with the change in the parents' social relationships, work, career or leisure-time activities; the importance of these activities did not decrease even though family cohesion increased. However, a child's chronic illness or disability affects the everyday life of the family, for instance 71% of the parents with diabetic children thought that the regularity of family life increased and about a half of the parents with physically or intellectually disabled children had to change their hobbies because of the child. In planning treatment and rehabilitation for a chronically ill or disabled child more attention should be paid to the whole family and its needs, not only to the child.     

Parents with first time major depression: perceptions of social support for themselves and their children

The aim of this study was to ascertain the perceptions of parents, with first time major depression, regarding the social support for themselves and their children. Eighteen parents, with children under the age of 19, were interviewed on admission to an inpatient unit and of these 16 were followed up 1 year later. In addition, the severity of parents' depression and their functional status was measured. The results showed that although the parents did regain their mental health and functional capacity to a certain extent, they nevertheless remained in a vulnerable position, increasing the strain on the whole family. The parents' and their children's social support was low and came mostly from outside the family. The parents were worried about their children, due to problems related to the depressive episode as well as ordinary teenage rebellion. Important questions concerned practical problems such as whether there was someone to take care of the children if the parent is incapable of doing so. There were also concerns pertaining to how the changed family situation might interfere with the child's natural development or whether depression was a question of heredity. This highlights the need to investigate the importance of social support for the family as a whole when one of them suffers from depression. There is a need for improved treatment of parental depression to reduce symptoms such as decreased functional status that may impair parenting. The study also emphasises the need for healthcare practitioners to assess multiple aspects of social support so that care planning will target all relevant domains.     

Out-of-home placement of children with intellectual disability: Israeli-born parents vs. new immigrants from the ex-USSR

Although the policy of deinstitutionalization encourages parents to raise a child with development disability at home, professionals are becoming increasingly aware of these parents' care-giving roles. Immigrant parents from the ex-USSR who have children with developmental disabilities are potential clients for placement, but to date, the tendency in Israel to out-of-home placement by immigrant parents, compared with Israeli-born parents, has not been studied. The placement variables were examined as a function of place of birth, emotional stress and social support. The sample was 100 parents who have children aged 6-21 years with mild to moderate mental retardation (according to the American Association on Mental Retardation definition) who live at home. Fifty parents were immigrants (arrived in Israel after 1990) and 50 were Israeli-born. They live in the region of Haifa and the north of Israel. The following measurements were carried out: (1) Demographic Questionnaire for data such as place of birth, age, socioeconomic status, etc., (2) Questionnaire of Resources and Stress, (3) Family Support Scale and (4) Out-of-Home Placement Questionnaire. The results showed that parents' readiness to apply for out-of-home placement proved to be related to their stress level and child's age, regardless of their origin (immigrants or Israeli-born) and regardless of social support resources. The older the children with mental retardation and the higher the stress levels felt by their parents, the higher was these parents' potential to apply for out-of-home placement. Immigrant parents tended to report a significantly higher level of stress than Israeli-born parents. No difference was found in the social support resources available to both research groups. Immigrant parents' stress level was higher as the child's mental retardation level was more moderate and their time in Israel was longer. Stress level among Israeli-born parents was higher among those who were religious, were of lower socioeconomic status and/or when, in addition to the mental retardation, the child suffered from other medical problems. In conclusion, families with children with mental retardation should be referred to services in an integrative way, regardless of the origin of the children's parents. Professionals must increase their own awareness of parents' level of stress and its impact on their readiness to apply for out-of-home placement. Recommendations for practical work and for future researches are made.     

Optimism, anxiety, and coping in parents of children hospitalized for spinal surgery

Optimistic expectations about outcomes have significant implications for behaviors. Knowing the role that dispositional optimism plays in parents' anxiety and coping responses during their child's surgical experience is essential to aid professionals in bolstering parents' coping and providing support. Parental optimism, anxiety and coping, and whether optimism moderated (changed) the anxiety-coping relationship preoperatively and postoperatively were the factors evaluated in this study. Parents (N = 60) primarily white of middle and upper middle class, were administered the Life Orientation Test to assess optimism, Spielberger's State Anxiety Scale and the Ways of Coping Questionnaire. Parental anxiety decreased significantly from preoperative to postoperative levels but remained high, indicating that parents continue to be emotionally distressed during their child's recovery. Reappraising the situation more positively (positive reappraisal) was the most often used emotion-focused coping strategy and seeking social support was the most often used problem-focused coping strategy. The preoperative and postoperative anxiety-coping relationships also depended on parents' levels of optimism. The use of emotion-focused coping strategies was not effective for reducing anxiety in highly optimistic parents. Recommendations include continually assessing the parents' need for reassurance and support throughout the surgical experience. Professionals can bolster parental coping by stressing the benefits of surgery and encouraging parents to be actively involved in the child's care and progress.     

Being in tune with oneself, children, and parents: meanings of being a supporter to families with children who disabilities as narrated by parent-selected professionals

The importance of giving professional support to parents who have a child with a disability is well documented in the research literature. Research from parents' perspective shows however that how support is delivered for an entire family's well-being is crucial. The aim of this study was to illuminate the meanings of being a supporter as narrated by nine parent-selected professionals. The findings show that having a personal and professional philosophy on being and doing is crucial when helping parents care for their child. Being confident that it is always possible to help means to seek unique solutions for each child and family. Being a trustworthy partner of parents means to trust in parents as invaluable partners as well as to exert efforts to gain the parents' trust, seeing parents as both persons and the child's carer, and being sensitive to parents' vulnerability. Enabling parents to gain competence and confidence in parenthood embraces the knowledge and skills necessary for the competence as their child's carer and respecting parental authority. The findings are interpreted as being in tune with oneself, children, and parents--which in this study implies freedom from being confined by bureaucracy, prestige, and institutional norms but freedom to be authentic and act according to personal philosophies.     

Stress and well-being among parents of children with rare diseases: a prospective intervention study

AIM: This paper reports a study to assess stress, well-being and supportive resources experienced by mothers and fathers of children with rare disabilities, and how these variables were affected by an intensive family competence intervention. BACKGROUND: Despite diagnosis-specific studies, little overall knowledge exists about life-consequences for families of children with rare disorders. METHOD: We used a prospective design with baseline data and two follow-ups (at 6 and 12 months) after an intervention. The intervention aimed at empowering parents in managing their child's disability. Parents from all parts of Sweden visiting a national centre for families of children with rare disabilities were consecutively selected (n = 136 mothers, 108 fathers). Instruments of parental stress, social support, self-rated health, optimism and life satisfaction and perceived physical or psychological strain were used. Stratified analyses were carried out for mothers and fathers, and related to parental demands: single mothers, full-time employment, participation in a parent association, child's age and type of disability. RESULTS: We found high parental stress, physical and emotional strain among mothers, especially among single mothers. Fathers showed high stress related to incompetence, which decreased after the intervention. Decreased strain was found among full-time working mothers and fathers after the intervention. Parents' perceived knowledge and active coping and mothers' perceived social support were increased at follow-up. Factors related to parents' overall life satisfaction (57-70% explained variance) changed after the intervention, from being more related to internal demands (perceived strain, incompetence and social isolation) to other conditions, such as problems related to spouse, paid work and social network. CONCLUSION: Parents, especially fathers and full-time working parents, may benefit from an intensive family competence programme.     

Developmental Origins of Cognitive Vulnerability to Depression: Parenting, Cognitive, and Inferential Feedback Styles of the Parents of Individuals at High and Low Cognitive Risk for Depression

In this study, we examined the role of three social learning mechanisms in the development of undergraduates' depressogenic cognitive styles: modeling of parents' negative cognitive styles; negative inferential feedback from parents regarding the causes and consequences of stressful events in the child's life; and negative parenting practices. We obtained partial support for each of the three hypotheses. Compared to the parents of cognitively low-risk students, cognitively high-risk students' mothers exhibited more negative dysfunctional attitudes and inferential styles themselves; high-risk students' fathers showed less emotional acceptance and warmth; and high-risk students' mothers and fathers both communicated more stable, global attributional feedback and negative consequence feedback for stressful events in their children's lives. In addition, both parents' inferential feedback and fathers' emotional acceptance predicted their undergraduate children's likelihood of developing an episode of major or minor depression or the subtype of hopelessness depression during a 2.5-year prospective follow-up period, with some of these predictive associations mediated totally or in part by the students' cognitive vulnerability status.     

Parental perspectives on end-of-life care in the pediatric intensive care unit

OBJECTIVE: To identify priorities for quality end-of-life care from the parents' perspective. DESIGN: Anonymous, self-administered questionnaire. SETTING: Three pediatric intensive care units in Boston. PARTICIPANTS: Parents of children who had died after withdrawal of life support. MEASUREMENT AND MAIN RESULTS: Parents' views of the adequacy of pain management, decision making, and social support during and after the death of their child were measured with the Parental Perspectives Questionnaire. Of 96 eligible households, 56 (58%) responded. In 90% of cases, physicians initiated discussion of withdrawal of life support, although nearly half of parents had considered it independently. Among decision-making factors, parents rated the quality of life, likelihood of improvement, and perception of their child's pain as most important. Twenty percent of parents disagreed that their children were comfortable in their final days. Fifty-five percent of parents felt that they had little to no control during their child's final days, and nearly a quarter reported that, if able, they would have made decisions differently. There were significant differences (p < .001) between the involvement of family, friends, and staff members at the time of death and greater agreement (p < .01) about the decision to withdraw support between parents and staff members than with other family members. CONCLUSIONS: Parents place the highest priorities on quality of life, likelihood of improvement, and perception of their child's pain when considering withdrawal of life support. Parents make such decisions and garner psychosocial support in the context of a social network that changes over time and includes healthcare professionals, family, and friends.     

Coping and social support of parents with a diabetic child

The purpose of this study is to describe and understand the parental coping and the social support received by the parents of diabetic children. The parental coping process was followed for a 4-week period after the diagnosis of diabetes. The parents of two girls, whose diabetes was diagnosed in early childhood, served as study subjects. Data were collected by interviewing and observing the parents over four separate periods. The data were analyzed by the time series and content analysis methods. Six phases of parental coping were identified: disbelief, lack of information and guilt, learning to care, normalization, uncertainty and reorganization. In the different phases of parental coping, the parents' experience of stress, coping strategies and sense of control varied. In the phase of disbelief, the parents tried to reject the child's diabetes by questioning the diagnosis. The initial information given to the parents regarding their child's diabetes proved to be important for parental coping. In the phase of lack of information and guilt, the parents sought reasons for their child's diabetes and felt guilty about it. As coping responses, the parents sought support from each other and from people who had experienced the same. In the learning to care phase, they recognized the demands caused by diabetes and took responsibility for the child's care. The parents appreciated supervision based on their problems. In the normalization phase, the parents prepared to return home with the diabetic child. Getting back to normal life was one of the most effective parental coping responses. In the uncertainty phase, the care to be given to the diabetic child changed the daily routines of the family. In the reorganization phase, the parents adapted to the diagnosis of diabetes and to the care of their diabetic child. The parents felt that the life of the family normalized and was able to be controlled.     

Time management: realities for parents living with children with motor deficiencies]

A quantitative study involving 244 families from three health and social service regions of Quebec was undertaken to explore how families function. Fourteen families agreed to participate in the qualitative part of this study. Twenty-eight parents participated through an in-depth interview. During the interviews, the impact of the presence of a child with a motor disability on the parents' use of time was discussed. An analysis of the themes and categories highlighted the different aspects of the impact of a handicapped child on the parents' use of time in relation to the four spheres of life. In fact, the parents that were interviewed indicated that the presence of their child greatly influenced the time they had available for their personal, conjugal and family life as well as for doing any paid work. In general, mothers devoted more time than fathers to the care of the child. This situation has a direct impact on the way the mothers manage their time. Based on an analysis of the respondents' comments, the author recommends to offer support to the parents in order to assist them with time management.     

Care of sick children by parents: a meaningful role

Parental involvement in their child's care in hospital has undergone great change over the last century. Studies have shown how 'maternal deprivation' and 'separation anxiety' expressed by children are detrimental to a child's recovery in hospital. Striving efforts have been made to develop family-centred care, promote normality of the family unit and continue with the normal routine of the child's life within the limitations of a hospital environment and the child's illness. Expectations of the parental role in hospital need to be identified and expressed from both the parents and staff to establish an understanding that will ultimately be best for the child. Many studies have highlighted benefits to both parent and child from parental participation in hospital. However, disadvantages have been identified from resident parents who feel captive to their new situation and role. Efforts for family-centred care are highly advocated now. Care-by-Parent units have been set up in some areas to promote this idea and, although many advantages have been identified, they are not without their problems. The success of parental involvement is dependent on both parents' and staff's attitudes, enthusiasm and willingness to work together.     

Schizophrenia: problems of separation in families

BACKGROUND: In the past, family relationships of people with schizophrenia have mainly been investigated from a clinical viewpoint. The perspective of family development has generally been overlooked in this area of research. AIM: This paper reports a study exploring problems of development and detachment in families with an adult child with schizophrenia. METHOD: Using in-depth interviews, 51 parents of people with schizophrenia were questioned about their living situations and relationships with patients. FINDINGS: Spatial separation from the family home was often complicated or even prevented entirely, with patients permanently living in their parents' household or in the same neighbourhood. Many patients remained dependent on their parents' emotional, practical and financial support. Typically, the parent-child relationship was re-intensified, often with a concurrent loss of social contacts outside the family. From a biographical point of view, schizophrenia often caused problems for families by making parenthood permanent and lifelong parental support necessary. Many parents had to revise their expectations of both their ill child's development and their own personal plans. CONCLUSION: From the viewpoint of family psychology, schizophrenia is a serious obstacle to development that affects both patients and their parents. Family-related support should increasingly take into account the issue of the difficult detachment of patients from their parents.     

Parental catastrophizing about their child's pain. The parent version of the Pain Catastrophizing Scale (PCS-P): a preliminary validation

Numerous studies have found evidence for the role of catastrophizing about pain in adjustment to pain in both adults and children. However, the social context influencing pain and pain behaviour has been largely ignored. Especially in understanding the complexities of childhood pain, family processes may be of major importance. In line with the crucial role of pain catastrophizing in explaining adjustment and disability in adults and children, this study investigates the role of parental catastrophic thinking about their child's pain in explaining child disability and parental distress. To study parental catastrophizing, a parent version of the Pain Catastrophizing Scale (PCS-P) was developed. An oblique three-factor structure emerged to best fit the data in both a sample of parents of schoolchildren (N=205) and in a sample of parents of children with chronic pain (N=107). Moreover, this three-factor structure was found to be invariant across both parent samples. Further, in the clinical sample, parents' catastrophic thinking about their child's pain had a significant contribution in explaining (a) childhood illness-related parenting stress, parental depression and anxiety, and (b) the child's disability and school attendance, beyond the child's pain intensity.     

Transition experience of parents caring of children with epilepsy: a phenomenological study

BACKGROUND: Families who have a child with epilepsy show a significant impact on both the dynamics of the child's development and family systems in a social context. Knowledge of a family's lived experience in dealing with the early stages of their child's illness will provide a deeper understanding of their life and coping process. Most studies have focused on the child's developmental issues, parental attitudes, coping strategies and the child's adjustment. In order to assist families to cope with the early stage of having a child with epilepsy, nurses need to understand the nature of a family's lived experience. OBJECTIVE: The purpose of this study was to investigate the essence of the family health-illness transition experience from the parental perspective when a child is afflicted with epilepsy. DESIGN: Colaizzi's phenomenological approach was used. In-depth interviews were conducted with ten couples with regard to the first one and a half years after the diagnosis of epilepsy. SETTINGS AND PARTICIPANTS: Ten couples from two medical centers in Taiwan participated in the study. The age range of the children at diagnosis was 0.2-4.3 years. METHODS: Open attitude and imaginative variation techniques were used to investigate the meanings of the experience. This study used Colaizzi's method with both destructured and restructured analysis. Lincoln and Guba's trustworthiness criteria were employed to evaluate methodological rigor. RESULTS: Three concepts emerged: parents' psychological reactions, parental coping patterns and family resources. The parents' psychological reaction was that of being emotionally traumatized and physically exhausted. Parental coping patterns were vigilant parenting and aimed at reframing roles, facing the social challenge and assisting the child's social re-integration. The nature of family resources was family resiliency. The findings provide a scientific knowledge base for nurses when assisting parents and children during the health to illness transitional phase following a diagnosis of epilepsy.     

The social construction of illness experience: families with a chronically-ill child

This paper examines how parents constructed the illness of a child with chronic sickness. The focus is on eliciting the parents' explanatory model of illness, that is, how they understood and described their child's illness, and how they managed their interactions with the child.
The data were collected by using an ethnographic approach. In addition to obtaining parents' accounts, naturally occurring interactions between parents and children were observed and tape recorded. The paper discusses the parents' semantic definition of the 'child as normal'. In actual practice, however, the child's life was regulated by the parents' understanding of the biomedical model, and included time schedules dictated by the sickness and seclusion from other children. Adjustment in family lifestyle was seen as necessary to accommodate the child's health problem. It is argued that the parents' interactions with the child contain the essential feature of paradoxical communication. An ethnographically-based theoretical model of the social construction of sickness careers is introduced.
The paper gives verbatim accounts of naturally occurring interactions so that the reader has access to the data upon which the author's interpretations are based. The implications for nursing practice are discussed.     

Future life expectations and self-esteem of the adolescent survivor of childhood cancer.

The number of adolescent cancer survivors has increased dramatically over the past decade as the result of improved treatment and diagnostic techniques. This population brings with them unique characteristics and concerns. The present study consisted of interviews with 10 adolescent survivors of childhood cancer and their parents. It investigated the adolescent's present self-esteem, the future life expectations held by both the teenagers and parents, and the relationship between the variables. Results indicated that the adolescents felt moderately competent in their lives (measures of self-esteem) and the parents felt more certain than their children that the teenagers would accomplish the tasks deemed appropriate for entry into a healthy adulthood. Pearson correlations showed a strong relationship between parents' future life expectations and adolescents' self-esteem (r = .82; P = .002), but not between parents' and adolescents' future life expectations or between the adolescents' future life expectations and self-esteem. The results are significant in addressing the impact parents can have on their child's self-esteem.     

Parents' support and satisfaction with their child's postoperative care

It is recognized that parents' presence during their child's hospitalization is of benefit to the parents and the child. However, the level of parental involvement in their child's care may be influenced by many factors, such as the amount of support nurses provide for parents. This article reports on two themes from the findings of a larger study on parental involvement in children's postoperative pain management - parental support and parents' satisfaction with their child's postoperative pain management. The aim of the larger study was to explore both nurses' and parents' perceptions of parental involvement in their child's postoperative pain management. The methods used were both qualitative and quantitative. The qualitative method of phenomenology was used to guide 20 nurse and 20 parent interviews. Quantitative methods involved surveying the nurses and parents on their perceptions of how supportive the nurses were towards the parents. The charts of 20 children were reviewed for pain-related data. This article reports on the issues of parent support from the results of the survey, and on satisfaction relating to their child's postoperative pain management from the parent interviews. The findings demonstrated that nurses perceived that parents were receiving more support from them than that which parents felt they were receiving. Parents were more satisfied with their child's pain management and children received more analgesia when they were cared for by a lower grade nurse.     

Parents' perceptions of children with chronic illness: a study of immigrant Chinese families

This article describes and discusses parents' perceptions of a children with a long-term health problems in 16 Chinese immigrant families and 15 Euro-Canadian families. These data are part of a larger study, the purpose of which was to explore the illness experience and help-seeking behavior of these families. The data show that the Euro-Canadian parents see the illness or disability as affecting only particular aspects of the child's life, while the child as a whole is seen as normal. The Chinese parents more frequently describe the illness as having global effects on many aspects of the child's present and future life. These differences in perception are discussed in relation to literature about Chinese culture and the experience of immigration. It is suggested that how a parent perceives a child's illness affects how a parent cares for the child and interacts with health care providers.     

Parents' reports of children's medical care access: are there Mexican-American versus non-Hispanic white disparities?

OBJECTIVES: We investigated whether there were Mexican-American versus non-Hispanic white disparities in parents' reports of problems with 4 dimensions of children's medical care access after controlling for a range of demographic, social, economic, and health status factors. METHODS: Data were collected through a telephone survey of 5941 parents residing in Texas. The survey questionnaire included measures of the parent's demographic and socioeconomic status and the child's health-related quality of life. The behavioral model was used to guide the inclusion of factors in multivariate logistic regression analyses of parents' reports of their children's ability to obtain an appointment for routine/regular care, obtain care for illness/injury, obtain help/advice over the phone when calling the doctor's office, and having to wait more than 15 minutes in the doctor's office. RESULTS: Mexican-American parents had worse reports of all 4 dimensions of their children's access even after controlling for predisposing, enabling, and need factors. Among Mexican-Americans, there were no differences between those who primarily spoke English versus Spanish. Other factors that were significantly associated with at least 2 reports of access were household income, the child's insurance status, and the child's health-related quality of life. CONCLUSIONS: Mexican-American children face problems accessing medical care in a timely manner that are not fully explained by parents' demographic, social, and economic status or children's health-related quality of life. Health policy makers, managers, and clinicians should further consider how they could reduce the inequity of access to medical services among Mexican-American children.