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.     

Parent perceptions of the psychological functioning of their children diagnosed with pediatric motility disorders and that of family members.

The aim of our study was to characterize the parental perceptions of the behavioral and emotional functioning of their children and families coping with gastrointestinal motility disorders. The American Pseudo-obstruction and Hirschsprung's disease Society sponsored an educational meeting for parents of children afflicted with a variety of pediatric gastrointestinal motility disorders. During the conference, parents completed a questionnaire pertaining to the behavioral and emotional functioning of the afflicted child and other family members. Parents perceived that the child's illness was more difficult on the parents than on the affected child or their siblings. Also, parents perceived support from professionals, family, and friends increased after the children were diagnosed with pediatric gastrointestinal motility disorders. Parents worried most about the health and medical management of their afflicted child. The most common behavioral problem of the afflicted children was fear of separation, whereas the most common behavioral problem of their siblings was jealousy. The majority of referrals to mental health professionals resulted from parental emotional problems or marital discord.     

Family stress,perceived social support and coping following the diagnosis of a child's congenital heart disease

BACKGROUND: Congenital heart disease (CHD) is now estimated to be the second most prevalent chronic illness. A child's chronic illness may have effects that have pervasive consequences for family life. Recently, attention has focused on resiliency variables, especially social support and coping strategy, regulating the impact of stress. In the resiliency model of family stress, adjustment and adaptation, social support is viewed as one of the primary moderators or mediators between stress and well-being. AIMS: The purpose of this study was to explore the relationships of family stress, perceived social support, and coping and determine the resiliency factor associated with coping by families who have a child with chronic illness. DESIGN: In a secondary analysis of a large longitudinal study, the sample consisted of 92 families who had a child under age 12 who was newly diagnosed with CHD within the last 3-4 months. FINDINGS: Results from regression analysis revealed that perceived social support operated as a resiliency factor between family stress and both parental and family coping. Child and family characteristics appeared to be the important predictors of perceived social support and parental coping. Although perceived social support appeared to be an important predictor of parental and family coping, neither the moderating nor mediating model was supported in full but partial causal relations were confirmed. CONCLUSIONS: Findings provided evidence for the theoretical and empirical significance of perceived social support as a predictor of family coping. Further, these findings suggest that perceived social support is a factor influencing the resiliency of relatively high-risk groups of families who have a child with chronic illness.     

Navigating in an unpredictable daily life: a metasynthesis on children's experiences living with a parent with severe mental illness

A large group of individuals suffering from mental illness are parents living with their children. These children are invisible in the health care even though at risk for illhealth. The aim of this metasynthesis was to advance knowledge of how children of parents with mental illness experience their lives, thus contributing to the evidence of this phenomenon. The metasynthesis is following Sandelowski and Barroso's guidelines. Literature searches covering the years 2000 to 2013 resulted in 22 reports which were synthesised into the theme ‘navigating in an unpredictable everyday life’ and the metaphor compass. Children of parents with mental illness irrespective of age are responsible, loving and worrying children who want to do everything to help and support. Children feel shame when the parent behaves differently, and they conceal their family life being afraid of stigmatisation and bullying. When their parent becomes ill, they distance to protect themselves. The children cope through information, knowledge, frankness and trustful relationships. These children need support from healthcare services because they subjugate own needs in favour of the parental needs, they should be encouraged to talk about their family situation, and especially, young children should to be child‐like, playing and seeing friends.     

Predictors of Health-Related Quality of Life in Chinese Caregivers of Children With Autism Spectrum Disorders: A Cross-Sectional Study

The purpose of this study was to identify the predictors of health-related quality of life (HRQOL) among caregivers of children with autism spectrum disorders (ASD) in China. Two hundred and seventy-three caregivers were surveyed using questionnaires on HRQOL, family functioning, coping style, social support, and caregiver burden. Besides socio-demographic characteristics of children with ASD and their caregivers, results demonstrate that family functioning, coping style, social support, caregiver burden are predictors of HRQOL in caregivers of children with ASD, and these predictors correlated with each other. These results indicate that comprehensive intervention, which focuses on improving caregivers' coping strategies, social support (especially from family members and friends) and family functioning, and on releasing caregiver burden, should be provided to caregivers of children with ASD.     

Families living with severe mental illness: a literature review

Schizophrenia is a severe mental illness, which is stressful not only for patients, but also for family members. Numerous studies have demonstrated that family caregivers of persons with a severe mental illness suffer from significant stresses, experience moderately high levels of burden, and often receive inadequate assistance from mental health professionals. Effective family functioning in families with schizophrenia may be influenced by a variety of psychosocial factors. The purpose of this article was to present a review of the social science literature related to families living with schizophrenia that has been published during the last three decades. There is general agreement in the literature that a multitude of variables affect families with a severe mental illness, such as schizophrenia. Therefore, this literature review examined the most frequently investigated variables (coping, psychological distress and caregiver burden, social support, caregiver resiliency and depression, and client behavioral problems) as they are related to families and schizophrenia.     

Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and well-being

Goal of work This paper describes a literature review conducted to identify important factors that have been investigated as explanations of variability in the health and well-being of parents of children with cancer. Our purpose was to build a literature base that could be used to guide and direct future research. Materials and methods Medline, Cinahl, EMBASE, PsycINFO, and Sociological Abstracts were searched from 1980 to 2005 using the keywords neoplasms; child(ren) aged 0–18 years; parent(s), caregiver(s), mother(s), or father(s). For papers that met the study inclusion criteria, sample characteristics and information about factors related to caregiver health, or the relationship between such factors, were extracted. The findings were organized according to the six main constructs that form the caregiving process and caregiver burden model: background/context variables; child characteristics; caregiver strain; self-perception; coping factors; and caregiver physical and psychological health. Main results Articles meeting the inclusion criteria totaled 57. We found substantial research showing that certain child characteristics (e.g., child behavior; time since diagnosis) and indicators of coping (e.g., family cohesion, social support, stress management) are related to parental psychological health. Other aspects of the caregiving process (e.g., parental self-perception, family-centered care, and physical health) have received less research attention. Conclusion Various limitations and gaps in the current literature were identified in our review. Future research to understand the complex interrelationships between factors involved in the caregiving process should examine hypotheses that are guided by a theoretical framework and tested using advanced statistical techniques.     

Mediators for Internalizing Problems in Adolescents of Parents with Chronic Medical Condition

Parents’ chronic medical condition (CMC) is related to internalizing problem behavior in adolescents. Following the transactional stress and coping (TSC) model of Hocking and Lochman, our study examines whether the effect of illness and demographic parameters on the child’s internalizing problems is mediated by the ill parent’s quality of life, family functioning, and child adaptational processes. Participants were 160 adolescents (52 % female, mean age?=?15.1 years) from 100 families affected by parental CMC. Children completed a test battery including the Youth Self-Report. Family functioning was determined with the Interactional Problem Solving Inventory (marital functioning) and the Inventory of Parent and Peer Attachment (alienation from parents). Child adaptational processes were composed by cognitive processes, methods of coping, and child report of stress. Ill parents completed the Medical Outcome Study Short-Form and the Beck Depression Inventory, assessing quality of life. We used structural equation modeling to investigate the tenability of the TSC model. After a series of step-by-step modifications, the TSC model for children with parental CMC fitted the data closely. The ill parent’s quality of life, family functioning, and children’s daily hassles and stress mediated the effect of parental CMC on adolescent internalizing problems. Children’s active problem solving and social support seeking were not directly related to internalizing problems but significantly interfered with children’s self-esteem and stress. Child adaptational processes should be accorded a central role in support programs and interventions for children with parental CMC. Health practitioners and teachers are recommended to be alert for support needs in children.     

Coping strategies used by the relatives of people with obsessive-compulsive disorder

BACKGROUND: Obsessive-compulsive disorder (OCD) is a destructive mental illness that alters the lives of both patients and their relatives. Many investigations have described the coping strategies of relatives of patients with schizophrenia, depression and other psychiatric disorders, but there have been no studies reported about coping strategies and OCD. AIM: The aim of this paper is to report an investigation into experiences of burden in relatives of patients with OCD, and the coping strategies they had developed. METHOD: Narrative interviews with 22 family members of patients with OCD were analysed using a grounded theory approach. FINDINGS: Relatives described different burdens and developed different strategies to cope with these. While parents tried to educate their ill children, spouses focused on the patient's resources. The attempts of family members to cope with patients with OCD included assisting in rituals, opposing the symptoms and supporting patients in dealing with the illness. CONCLUSION: Implications for clinical practice to support these relatives are discussed.     

Help-seeking for parents of individuals experiencing a first episode of schizophrenia

The purpose of this triangulated study was to understand parents' experience of help-seeking in response to their child's first episode of schizophrenia. Twenty participants completed questionnaires related to stigma, parental caregiver burden, uncertainty in illness and help-seeking. Findings indicated: (1) as stigmatized attitudes towards mental illness and feelings of ambiguity increased, so did burden; (2) as parental education increased, uncertainty regarding their child's illness decreased; (3) as the number of symptoms causing distress increased so did burden and lack of clarity regarding their child's illness. A significant amount of time passed before parents were able to access help. No relationships were found between indicators of parental help-seeking and the study variables. A subset of five participants described their help-seeking experience. Three overarching themes emerged: (1) Evolving change: What does it mean? (2) Continuous help-seeking, and (3) The help-seeking experience: Impact on parents.     

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.     

Relations between social support, appraisal and coping and both positive and negative outcomes for children of a parent with multiple sclerosis and comparisons with children of healthy parents

OBJECTIVE: To examine adjustment in children of a parent with multiple sclerosis within a stress and coping framework and compare them with those who have 'healthy' parents. SUBJECTS: A total of 193 participants between 10 and 25 years completed questionnaires; 48 youngsters who had a parent with multiple sclerosis and 145 youngsters who reported that they did not have a parent with an illness or disability. METHOD: A questionnaire survey methodology was used. Variable sets included caregiving context (e.g. additional parental illness, family responsibilities, parental functional impairment, choice in helping), social support (network size, satisfaction), stress appraisal, coping (problem solving, seeking support, acceptance, wishful thinking, denial), and positive (life satisfaction, positive affect, benefits) and negative (distress, health) adjustment outcomes. RESULTS: Caregiving context variables significantly correlated with poorer adjustment in children of a parent with multiple sclerosis included additional parental illness, higher family responsibilities, parental functional impairment and unpredictability of the parent's multiple sclerosis, and less choice in helping. As predicted, better adjustment in children of a parent with multiple sclerosis was related to higher levels of social support, lower stress appraisals, greater reliance on approach coping strategies (problem solving, seeking support and acceptance) and less reliance on avoidant coping (wishful thinking and denial). Compared with children of 'healthy' parents, children of a parent with multiple sclerosis reported greater family responsibilities, less reliance on problem solving and seeking social support coping, higher somatization and lower life satisfaction and positive affect. CONCLUSIONS: Findings delineate the key impacts of young caregiving and support a stress and coping model of adjustment in children of a parent with multiple sclerosis.     

Families Living with Severe Mental Illness: A Literature Review

Schizophrenia is a severe mental illness, which is stressful not only for patients, but also for family members. Numerous studies have demonstrated that family caregivers of persons with a severe mental illness suffer from significant stresses, experience moderately high levels of burden, and often receive inadequate assistance from mental health professionals. Effective family functioning in families with schizophrenia may be influenced by a variety of psychosocial factors. The purpose of this article was to present a review of the social science literature related to families living with schizophrenia that has been published during the last three decades. There is general agreement in the literature that a multitude of variables affect families with a severe mental illness, such as schizophrenia. Therefore, this literature review examined the most frequently investigated variables (coping, psychological distress and caregiver burden, social support, caregiver resiliency and depression, and client behavioral problems) as they are related to families and schizophrenia.     

Factors influencing health promoting activities of mothers caring for ventilator-assisted children

The extensive care a ventilator-assisted child (VAC) requires when cared for in the home can impact the mother's ability to participate in health promotion activities. The purpose of this study was to examine health promotion activities and the relationships among functional status of the child, impact of the illness on the family, coping, social support, and health promotion activities of mothers who care for ventilator-assisted children at home. Thirty-eight primary female caregivers, mostly mothers, participated in the study and completed the Personal Lifestyle Questionnaire (PLQ), measures of child's functional status, impact of the illness on the family, coping, social support, and demographic data. Findings revealed that the mothers scored low on the nutrition, exercise, relaxation, and general health promotion subscales of the PLQ. Functional status of the child and coping were positively correlated with participation in health promotion activities, whereas impact of the child's illness on the family was inversely related to health promotion of the mothers. Regression analysis revealed that functional status of the child and coping were significant predictors of mothers' participation in health promotion activities. The high demands associated with caring for a VAC with poor functioning can be a significant risk factor for not participating in health promotion activities. Nurses need to help mothers with coping and finding resources to help mediate the stress related to caring for their child, thereby helping the mothers to maintain their own health.     

Predictors of family caregivers' burden and quality of life when providing care for a family member with schizophrenia in the People's Republic of China

Limited research has been undertaken regarding family caregivers' burden and quality of life (QOL) when providing care for a family member with schizophrenia in the People's Republic of China. This study examined the following in Chinese families caring for a member with schizophrenia: (i) the level of family caregivers' burden and QOL; (ii) the relationships among the demographic characteristics of family caregivers, the demographic characteristics of family members with schizophrenia, and family caregivers' burden and QOL; and (iii) the best predictors of family caregivers' burden and QOL. The findings suggest that family caregivers suffer a high level of burden when caring for a family member with schizophrenia. Numerous significant correlations were found among the variables. The best predictor of family caregivers' burden was found to be their level of education, while the best predictors of family caregivers' QOL were physical health and household income.     

儿童亲属活体肝移植供者兼照顾者照护体验的质性研究

目的 探讨儿童亲属活体肝移植供者兼照顾者的照护体验。 方法 采用描述性现象学研究法,对2021年5月—8月杭州市某三级甲等医院肝移植中心收治的11名儿童亲属活体肝移植供者兼照顾者进行深入访谈,运用Colaizzi分析法,采用Nvivo软件对资料进行分析、整理。 结果 共提炼出4个主题,即身心困扰明显,包括躯体症状明显和心理负担沉重;多重角色适应冲突,包括供者-照顾者角色适应冲突、患儿照顾者-其他家庭成员照顾者角色适应冲突、家庭-社会角色适应冲突;知足与积极面对;感恩与反哺社会。 结论 儿童亲属活体肝移植供者兼照顾者的负担感受和积极体验同时存在。医护人员应采取针对性的干预措施,减轻其负担感受,调动积极体验,引导其积极面对,从而提高其生活质量和照护质量。     

Family burden in chronic mental illness: a review of research studies

Early research has established that burden exists and has identified certain behaviours of mentally ill relatives that family members find most distressing Further research has confirmed the accuracy of the early work and has focused on the severity of mental illness Recent research has stressed the importance of social support in the study of caregiver burden This paper explores the research literature that covers the concept of caregiver burden in the area of mental illness and also presents developed instruments for the study of caregiver burden     

Being there: parenting the child with acute lymphoblastic leukaemia

Aims and objectives. To gain insight into the lived experience of parenting a child with leukaemia during treatment. Background. Diagnosis of leukaemia in children leads to an existential shock for parents and a reversal of normal family life. Today, in the Netherlands, after diagnosis, children stay at home most of the time. Therefore, their parents face considerable responsibilities for administering home‐based treatment and for the support of their child during illness and treatment. Methods. A grounded theory study was undertaken at a Dutch University Hospital and involved one‐time individual in‐depth interviews with 12 mothers and 11 fathers (n = 23) of 12 children. Findings. ‘Being there’, was identified as the core concept. It means: ‘I’ll be there for you; I will never let you down’. ‘Being there’ is described as a parental response to the perceived vulnerability of the child and the parental need to give meaning to parenthood. It serves two purposes: protection and preservation. Protection means guarding the child against the negative aspects of illness and treatment. Preservation refers to the way parents influence the child’s perception of his/her life, thus contributing to his/her coping and willingness to undergo treatment, to maximise the chances for survival. Six aspects were identified: a trusting relationship, presence, emotional support, advocacy, routines and rituals and effacing oneself. Conclusions. The concept provides a theoretical frame for parenting the child with cancer. It clarifies the actions and reactions of parents and increases insight into the underlying force that enables parents to provide continuing care despite their personal burden. Relevance to clinical practice. The concept offers an essential insight into parenting the child with acute lymphoblastic leukaemia and has relevance for nursing practice and education. Understanding of the concept would improve the ability to understand, communicate and work pro‐actively in partnership with parents.     

Factors associated with the coping of parents with a child in psychiatric inpatient care

The purpose of this study was to establish the parental coping' factors associated with having a child in psychiatric inpatient care. The data were collected from 19 hospitals with child psychiatry units. At the time of data collection, all parents of children in psychiatric inpatient care in these hospitals were recruited. The method of data collection was a questionnaire (n = 79). The data were analysed with the Statistical Package for the Social Sciences (SPSS) for Windows statistical software. The connections between variables were studied with cross-tabulation, and the chi2 test was used to determine significance. Changes in internal and external family relationships and matters related to the upbringing of the child with mental problems statistically correlated significantly with parental coping (P < 0.001). Problem-oriented and emotionally-oriented coping strategies, skills and palliative strategies correlated significantly with parental coping (P < 0.001). Emotional support, support for the care and upbringing of the child in inpatient care, and love and acceptance also had statistically significant associations with parental coping (P < 0.001).     

Adult children of parents with mental illness: Dehumanization of a parent – ‘She wasn't the wreck in those years that she was to become later’

Children who have lived with parental mental illness experience long‐standing reduced health and social outcomes, alongside ongoing personal distress. While there has been some dialogue regarding interventions to support children who are living with parental mental illness, there remains a paucity of knowledge regarding adult children's experiences and potential needs. Given this, the aim of the present study was to establish parenting narratives of adult children who had experienced childhood parental mental illness. This included their experiences of being parented alongside their own subsequent parenting roles. Three men and 10 women, ranging from 30 to 78 years old, met individually with a researcher to tell their stories. Narratives were thematically analysed to establish themes. The findings of the study demonstrated that individuals who have lived with childhood parental mental illness dehumanized their parent with mental illness. The authors argue that all mental health services should be underpinned with a whole of family assessment and care philosophy. There is also a need for all mental health services to consider how policies and procedures might inadvertently dehumanize clients who are parents, which could contribute to familial dehumanization. This could prevent the dehumanization of parents who experience mental illness to preserve parental and child relationships.