The moral dangers of home birth: parents' perceptions of risks in home birth in Finland

This study explored Finnish home-birth parents' perceptions of risks in home birth through interviews. It was found that the parents considered three types of risks in their decision-making: medical risks of pregnancy and birth, iatrogenic risks of medical practice and moral risks of going against medical authoritative knowledge. While the parents' choice was guided by their image of the hospital as an iatrogenic environment for birth, they did not refuse prenatal examinations but, rather, negotiated the extent of their use to ensure the medical safety of their home-birth plan. Yet, they often concealed the plan from prenatal care staff in order not to be confronted with being labelled as a 'risk parent'. It is argued that the authoritative medical definition of childbirth as risky and as requiring hospitalisation contains a moral subtext which defines home birth as risky behaviour, for which the parents can be blamed and stigmatised.     

Lay voices on allergic conditions in children: parents' narratives and the negotiation of a diagnosis

Allergic conditions can be seen as an increasing as well as debated health problem in Western societies, but lay notions and experiences of these conditions are still not fully understood. As much attention is given to prevention of allergic conditions in early childhood, for example as medical advice to parents of young children, it is of particular interest to look at lay understandings of allergic conditions in childhood. This study, carried out in Sweden, explores understandings of child allergy, drawing on interviews with parents of children under 6 years, in a period when the children are medically assessed. The interviews are analysed as illness narratives, with a focus on how the parents explain the child's illness. The analysis reveals a complex pattern. The parents on the one hand refer to a shared knowledge about causes to allergic conditions, such as factors in the physical environment, family life-style and genetic causes. On the other hand, this knowledge is re-appropriated and intertwined with the parents' own experiences of allergic conditions in the process of making sense of the illness in their own child. In their stories, the parents link a potential allergic condition in the child to their own identities as allergic or non-allergic persons and to their family illness history. Child allergy is in this sense constructed as a "family condition".     

Psychological distress among parents of children with mental retardation in the United Arab Emirates

This study was designed to identify predictors of parental stress and psychological distress among parents of children with mental retardation in the United Arab Emirates. It examined the relative contributions of child characteristics, parents' sociodemographics, and family environment to parental stress and psychological distress. Participants were parents of 225 mentally retarded children, of whom 113 were fathers and 112 were mothers. Measures of parental stress (QRS-F), psychiatric symptom index (PSI) and family environment scale (FES) were administered in an interview format. Hierarchical multiple regression was used to predict parental stress and psychological distress. The results indicate that the model containing all three predictor blocks, child characteristics, parents' sociodemographics, and family environment, accounted for 36.3% and 22.5% of parental stress and parents' psychiatric symptomatology variance, respectively. The age of the child was significantly associated with parents' feelings of distress and psychiatric symptom status, and parental stress was less when the child was older. Parents reported more psychiatric symptomatology when the child showed a high level of dysfunction. Fathers' work appeared to be a significant predictor of parental stress, indicating that for fathers who were not working the level of stress was higher than fathers who were working. Lower socioeconomic level was associated with greater symptom rates of cognitive disturbance, depression, anxiety, and despair among parents. Among the family environment variables, only the personal growth dimension stood out as a predictor of parental stress. An orientation toward recreational and religious pursuits, high independence, and intellectual and recreational orientations were associated with lower levels of parental stress. On the other hand, parents in achievement-oriented families showed elevated levels of parental stress. Implications for prevention, and intervention as well as parent training and system-oriented counseling programs are discussed.     

'Good parents' strive to raise 'innocent daughters'

This paper analyses the views of parents in a slum setting in Pakistan regarding the marriage preparedness of their daughters. Twenty-five parents participated in four gender-specific focus group discussions. Latent content analysis was used to explore parents' views and experiences with regard to their daughters' marriage and how they prepared them for it. The main theme identified was that 'good parents' strive to raise 'innocent daughters'. Three sub-themes contributing to the main theme were: a daughter-a responsibility and a burden; social and sexual innocence; and parents' roles in the preparation for marriage. The theme and the sub-themes together illustrate how parents saw themselves as responsible for raising 'innocent daughters' and arranging good marriages. Parents realised, though, that bringing up daughters for marriage required not only training in submissivness, but also building confidence and knowledge during their childhood.     

Predicting Parental Attitudes Toward the Helpfulness of Postoperative Analgesic Medication

This study examined explanatory variables that could predict parent attitudes concerning the helpfulness of pain medication for their postoperative child. Predictor variables included beliefs underlying attitudes, prior medical experiences of the child and parent, and parental goals for pain relief. Data were provided by 236 parents of children undergoing day surgery and were analyzed using a multiple regression model. Although beliefs were significant predictors, parents' own experiences with surgery were stronger predictors of attitudes toward the helpfulness of pain medication for their children. Identifying parents' personal adverse experiences with surgery may assist in improving the care they provide to their child after surgery.     

Preimmigration beliefs of life success, postimmigration experiences, and acculturative stress: South Asian immigrants in the United States

This study retrospectively explored the links between preimmigration beliefs of life success and postimmigration experiences and their influence on acculturative stress among a group of parents who recently immigrated with their children from three non-English speaking countries-Bangladesh, India, and Pakistan-to the United States. The respondents, 75 sets of parents residing in New York City, participated in semistructured qualitative interviews. Discrepancies between the parents' anticipated life success in the United States and actual experiences after immigration were associated with the parents' expectations of their children fulfilling parents' own dreams of success. Two criteria specific to Asian culture that guided parental expectations were the responsibility of children in enhancing family pride and the role of education as a way to advance through the social class and the caste systems. Implications for understanding immigrant parents' sociocultural contexts, the potential negative impact of unrealistic expectations on children's development, and the significance of acculturative stress for parents as well as their children were discussed.     

The role familiarity with science and medicine plays in parents' decision making about enrolling a child in vaccine research

Parental consent to children's participation in vaccine research has resulted in the licensure of essential vaccines. Recruitment to this type of research is typically difficult, however, and many parents decline. In this study, the authors interviewed parents about their decision for or against enrolling their child in a vaccine study. The data analysis suggests that parents' ability to evaluate a vaccine study depends on how attuned they are with science and medicine, either professionally or as consumers of health services. Familiarity does not predispose parents to enrolling their child in research; rather, it is a predictor of parents' confidence in their decision making. Many parents were motivated by altruism and trust, which, if uninformed, can leave the parents prone to exploitation. It is vital to ensure that parents are confident in their judgment of a study and its potential benefit to their child and society.     

Why do we need a diagnosis? A qualitative study of parents’ experiences,coping and needs,when the newborn child is severely disabled

BACKGROUND: Communication with parents who are realizing their child is severely disabled is a difficult task for professionals. Parents are experiencing great emotional stress during the diagnostic process and dissatisfaction with disclosure is widespread. The aim of this study was to investigate parents' reactions when realizing their child's disability, the impact of the diagnosis and parents' ways of coping. METHODS: This was a qualitative, longitudinal study, using in-depth interviews with 16 parents of a physically and mentally disabled child who had recently been diagnosed as such. Children's age at inclusion ranged from 1 to 27 months. Half of the children had an unknown diagnosis. Data were analysed using the Grounded Theory method. RESULTS: were validated and approved by the interviewed parents. RESULTS: The certainty of the diagnosis was central for parents' experiences. First, the emotional reaction of the parents is highly influenced by the diagnostic process. Second, parents needed possibilities for taking action, and third they found difficulty in coping with an uncertain future. These three themes all related to the meaning that parents ascribed to the stating of a diagnosis. Parents' needs in relation to communication were identified as equality in co-operation with doctors, an empathic professional approach, and the child being seen with possibilities despite his or her disabilities. CONCLUSIONS: Parents' process of realization was related to the diagnostic process, and information and communication should be individualized accordingly. Parents wanted to co-operate and they needed possibilities for active coping with their situation.     

Finding meaning in the loss of a child: journeys of chaos and quest

The death of a child can be one of the worst things to happen to a family. Despite the significance of such a powerful event, parental loss is an area that has not been fully explored in the literature. This study uses narrative methodology to explore the grief experienced by 10 parents before and after the death of their child. We found four primary tensions in the stories written by parents: a time of chaos and control; disruption and normalcy in family life; heartening and disheartening experiences with others; and senselessness and meaning in death. The analysis illuminates the personal, familial, and social nature of grief. Parents grieve the loss of their child, but they are also deeply affected by changes in family and social relationships. The discussion elaborates on the transformation that some parents reveal as they move from "chaos" to "quest" narratives, and the role of narratives in health and healing.     

Finding Meaning in the Loss of a Child: Journeys of Chaos and Quest

The death of a child can be one of the worst things to happen to a family. Despite the significance of such a powerful event, parental loss is an area that has not been fully explored in the literature. This study uses narrative methodology to explore the grief experienced by 10 parents before and after the death of their child. We found four primary tensions in the stories written by parents: a time of chaos and control; disruption and normalcy in family life; heartening and disheartening experiences with others; and senselessness and meaning in death. The analysis illuminates the personal, familial, and social nature of grief. Parents grieve the loss of their child, but they are also deeply affected by changes in family and social relationships. The discussion elaborates on the transformation that some parents reveal as they move from “chaos” to “quest” narratives, and the role of narratives in health and healing.     

Parental Feeding Practices in the United States and in France: Relationships with Child's Characteristics and Parent's Eating Behavior

Given the role of parental feeding practices in establishing children's eating habits, understanding sources of individual differences in feeding practices is important. This study examined the role of several psychological variables (ie, parental perceived responsibility for child's eating, parental perceptions of the child's weight, and parents' own eating patterns) in individual differences in a variety of feeding practices. Parents of preschool-aged children completed surveys in a cross-sectional study. Two cultural contexts (ie, United States, n=97 parents; and France, n=122 parents) were included to assess the cross-cultural generalizability of the findings. Monitoring was associated with parental perceived responsibility for child's eating, parental restrained eating, and parents' desire for their child to be thinner, especially in France. Restriction for weight reasons was more prevalent in France and was associated with parents' perceived responsibility for child's eating, perception of child's body weight, and parental restrained eating. Parental use of foods for nonnutritive purposes was more prevalent in the United States and was associated with parental uncontrolled or emotional eating. Finally, parents' perceived responsibility for child's eating was strongly related to child control over feeding, teaching about nutrition, encouragement of balance, and variety and modeling. These associations between psychological variables and parental feeding practices shed light on the sources of individual differences in feeding practices and suggest possible opportunities for intervention when feeding practices are suboptimal.     

Decision-making in community-based paediatric physiotherapy: a qualitative study of children, parents and practitioners

Approaches to practice based on partnership and shared decision-making with patients are now widely recommended in health and social care settings, but less attention has been given to these recommendations in children's services, and to the decision-making experiences of non-medical practitioners and their patients or clients. This study explored children's, parents' and practitioners' accounts of shared decision-making in the context of community-based physiotherapy services for children with cerebral palsy. Semi-structured interviews were conducted with 11 children with cerebral palsy living in an inner city area of northern England, and with 12 of their parents. Two focus groups were conducted with 10 physiotherapy practitioners. Data were analysed using the constant comparative method. When asked explicitly about decision-making, parents, children and practitioners reported little or no involvement, and each party saw the other as having responsibility for decisions. However, when talking in more concrete terms about their experiences, each party did report some involvement in decision-making. Practitioners' accounts focused on their responsibility for making decisions about resource allocation, and thereby, about the usefulness and intensity of interventions. Parents indicated that these practitioner-led decisions were sometimes in conflict with their aspirations for their child. Parents and children appeared to have most involvement in decisions about the acceptability and implementation of interventions. Children's involvement was more limited than parents'. While parents could legitimately curtail unacceptable interventions, children were mostly restricted to negotiating about how interventions were implemented. In these accounts the involvement of each party varied with the type of issue being decided and decision-making appeared more unilateral than shared. In advocating shared decision-making, greater understanding of its weaknesses as well as its strengths, and greater clarity about the domains that are suitable for a shared decision-making approach and the roles of different parties, would seem a helpful step.     

Coping with grief following perinatal death: a multifaceted and natural process

Coping with grief following perinatal death is a natural process that every individual experiences in his own personal and unique way. Parents go through varying emotions in the months following the death of their baby. Empathic support and understanding, both from the parents' social network and from professional caregivers, have a positive effect on the mourning process. Parents benefit from individually focused counseling and assistance in making their own choices with regard to saying goodbye and the way in which they will cope with their grief in the immediate future, as parents, within the family and in relation to the people in their surroundings. It is recommended that the attention for the parents and their lifeless child and all care behaviour be the same, as much as possible, as after the birth of a living child.     

Parents' experiences of caring for a child with a cleft lip and/or palate: a review of the literature

This review brings together for the first time the existing quantitative and qualitative research evidence about the experiences of parents caring for a child with a cleft. It summarizes salient themes on the emotional, social and service-related experiences of parents and critiques the literature to date, comparing it with wider, selected literature from the field of children's long-term conditions, including disability. The review suggests that there are similarities and differences between the literatures, in terms of research focus and approach. Similarities are found across children's conditions in the perspectives of parents on emotional, social and service-related aspects, although much of the cleft literature is focused on the early stages of children's lives. However, the quality of cleft research to date about parents' experiences has also been variable, with a narrow emphasis on cross-sectional, deficit-orientated psychological approaches focused mainly on mothers. Despite a substantial literature, little qualitative research has examined parents' perspectives in-depth, particularly about their child's treatment journey. This contrasts with the wider children's literature, which has traditionally drawn not only on psychological approaches but also on the broader perspectives of sociology, social policy, nursing and health services research, using both qualitative and quantitative methods, often in integrated ways. Such approaches have been able to highlight a greater range of experiences from both mothers and fathers, about caring for a child with a long-term condition and views about treatment. The review identifies a lack of comparable research in the cleft field to examine parents' experiences and needs at different stages of their children's lives. Above all, research is needed to investigate how both mothers and fathers might experience the long-term and complex treatment journey as children become older and to elicit their views about decision making for cleft treatments, particularly elective surgeries.     

The cycle of uncertainty: parents’ experiences of childhood epilepsy

Uncertainty has been highlighted as an important aspect of experiences of chronic conditions generally and epilepsy in particular. However, there is little research exploring the extent to which uncertainty features in the experiences of family members or the form that this uncertainty may take. Drawing on in‐depth semi‐structured interviews with 27 parents who had a child with epilepsy, this article explores parents’ experiences of uncertainty and the way in which their views on childhood and epilepsy interacted and contributed to the uncertainties they experienced. It is argued that the occurrence of epilepsy during childhood shaped parents’ experiences as they used their ‘social clocks’ in order to interpret symptoms. Furthermore, parents described what has been termed a ‘cycle of uncertainty’. Indeed, the combination of epilepsy (a condition with various inherent forms of uncertainty) and childhood (a period in the life course that is seen as a time of development) meant that parents could not be sure which changes in their child were a result of the condition and which were a normal part of the ageing process. Overall, this article demonstrates that it is important to contextualise experiences of chronic conditions in relation to different stages in the life course.     

Selecting a Child Care Center: What Really Matters to Parents?

Previous research on parents' decision making concerning child care centers has attempted to evaluate the importance of various characteristics of the centers by having parents evaluate them one at a time. In an effort to better understand how parents evaluate centers when they must consider all the characteristics of the center simultaneously as is done in real life, 235 parents who were in the process of finding child care for their children were surveyed. Utilizing conjoint analysis, parents were presented with profiles of child care centers in which eight center characteristics were varied. Parents evaluated all eight characteristics simultaneously and then indicated how likely they were to select each center. Results indicated that the characteristics of child care centers that most significantly affect parents' decision-making vary based on demographic characteristics of the parents. Single mothers attend most strongly to cost in their decision making, while married mothers attend to the child/staff ratio and married fathers give relatively equal attention to four factors; cost, convenience, child/staff ratio and hours of operation. Further differences in parents' decision-making strategies were found based on parents' education and family income. These findings are discussed in light of the importance of developing child care programs which meets the needs of parents as well as children.     

Parenting support in the context of poverty: a meta-synthesis of the qualitative evidence

From the outset, providing support for parents has been a key feature of New Labour's policy agenda, but 'good' parenting, and child health and well-being are often undermined by the stresses associated with poverty. Moreover, there may be a gap between policy aims, and the perceptions and motivations of those intended to benefit. Drawing on a systematic review of qualitative studies of low-income parents, the present paper explores their experiences of informal and formal support networks, considering their strengths and weaknesses in the context of poverty. Traditional systematic review methods were used to locate and critically appraise 12 UK qualitative studies, which took as their focus parents' subjective experiences of caring for children in impoverished circumstances. Meta-ethnographic methods were then used to produce a qualitative meta-synthesis of findings. Exploring the similarities and differences in parents' accounts across studies identified positive and negative aspects of social support as a resource for poor parents. The review suggests that naturally occurring support systems do provide both material and emotional help to parents, but that such support has certain inherent drawbacks. It is not universally available and, in some circumstances, carries negative associations for poor families. Low-income lone mothers in particular enjoy smaller support networks, and are more reliant on mutual support than those in two-parent families. Paradoxically, it is the most socially isolated women who are least willing to seek professional help. Overall, low-income parents' experiences of formal health and social welfare agencies are mixed, and not invariably positive. In conclusion, this paper suggests that formal support services have the potential to fill gaps in informal support systems for poor families, but only if these are provided in ways which are sensitive to their needs. Therefore, parents' perspectives are essential to informing service design, development and evaluation in health and social care.     

When resources get sparse: a longitudinal, qualitative study of emotions, coping and resource-creation when parenting a young child with severe disabilities

Parents who realize that their newborn child is severely disabled often experience severe physical and emotional stress. Parental well-being is essential for the care-taking of the child. It is yet not known why some cope well and others do not. The aim of this study was to explore how parents coped with parenting a disabled child and how they maintained their energy and personal resources. We explored parents' experiences, coping and resources over a two-year period after their child was diagnosed with a severely disabling condition using a qualitative, longitudinal approach. Findings were interpreted in a theoretical framework of Lazarus and Folkman's studies on coping and Fredrickson's broaden-and-build theory of positive emotions, as well as theories of positive illusions and benefit finding during severe adversity. We found that parents continually created and sustained their personal resources through positive cognitive reappraisals of their circumstances, the consequences of those circumstances and their coping possibilities. Nine main coping strategies were identified constituting transformative pathways in resource-creation. A theory of resource-creation is proposed as an addition to the current understanding of coping and the role of positive emotions. Coping and resources were found to be closely interrelated and portals of intervention are discussed.