Search

There is evidence that childhood adversity is correlated with poor health outcomes across the lifespan. Resilience results when internal and external protective factors in childhood mitigate this relationship. However, among children on the autism spectrum, these relationships are understudied, and little is known about the characteristics and role of adversity and resilience in their in their lives. This study interprets these phenomena as experienced by autistic young adults. Initially, we conducted community engagement with five members of the autism community who advised on the research question, research design, and analysis. Subsequently, four autistic young adults, three women and one non-binary, aged 19–27, were recruited to participate in semi-structured interviews via phone, video conference, and online chat. Credibility checking interviews followed data analysis. Through interpretative phenomenological analysis we identified themes related to the negative effects of adversity, including social disconnection, mental and emotional well-being, sense of self, and development into young adulthood. Resilience developed in places of refuge and identity and was evident in their transitions into young adulthood. These findings provide direction for decreasing adversity and fostering resilience in children and adolescents on the autism spectrum. [ABSTRACT FROM AUTHOR]

Background: Burn injury is one of the major traumas that a child can experience. Parents of burn-injured children experience anxiety, depression, guilt and post traumatic stress disorders as they care for their burn-injured children. Such empirical evidence related to effects of burns on parents and parenting process is unavailable from low and middle income countries like India. Objectives: The aim of the study was to discover the process of parenting burn-injured children in India. The objective of this paper is to present one of the substantive processes ''Enduring the Blame'' that emerged from the data. Design: Constructivist grounded theory methodology was used to explore the experiences of parenting burn-injured children. Setting: The study was conducted through a tertiary hospital that provided advanced paediatric burn care in a town in South India. Setting: The study was conducted through a tertiary hospital that provided advanced paediatric burn care in a town in South India. Methods: Twenty-two semi structured individual or family interviews were conducted in Tamil over a period of one year. The interview started with an overview question and then was followed by trigger questions as the participants shared their experiences. Second interviews were conducted with three participants in three families for theoretical saturation purposes. Results: Mothers and fathers encountered blame from family members, health professionals, strangers, and their burn-injured children along the burn injury trajectory. They suffered double trauma of their child's burn and the blame. Parenting their burn-injured child involved a process of ''Enduring the Blame.'' Enduring the Blame included four stages: internalizing blame, submitting to blame, rising above blame, and avoiding blame. Conclusions: Encouraging and assisting parents in caring for their children instead of blaming is a vital component of paediatric burn care. Parents will benefit from ongoing assessment and psychological interventions that will provide emotional support. Studying the perceptions of health professionals and the burn-injured children will help in further clarification of blame related issues and developing a parenting theory. [ABSTRACT FROM AUTHOR]

The positive effect of supportive family environment on burn-injured child's long term outcome is well established. How parents provide this support as they recover with their children is not addressed especially in low and middle income countries where the burn burden is high. It is assumed that parents are non-compliant in bringing their children for follow up. Using grounded theory methodology this study aimed to explore and discover the process of parenting children in India with burn injury. Semi-structured interviews with 22 family members of 12 burn-injured children and field notes yielded rich data. The analysis by open and focused coding and constant comparisons of participants’ accounts revealed a parenting process of embracing survival. For parents embracing survival involved (1) suffering the trauma along with their burn-injured child, (2) sustaining the survival of their child, and (3) shielding the child from stigma related to scarring and disfigurement. Parents perceived minimal support from health professionals and family members. Mothers and fathers formed a team and did their best for their burn-injured children. Assessing and meeting the needs of the parents and empowering parents to provide effective long term care are vital components of burn care. The health professionals’ perceptive on parenting burn-injured children need to be explored. [Copyright &y& Elsevier]

rempel g.r., ravindran v., rogers l.g. & magill-evans j. (2013) Parenting under pressure: a grounded theory of parenting young children with life-threatening congenital heart disease. Journal of Advanced Nursing 69(3), 619-630. doi: 10.1111/j.1365-2648.2012.06044.x Abstract Aim. To report a grounded theory study to describe the process of parenting young children who have survived hypoplastic left heart syndrome to inform parent-focused interventions. Background. Technological advances in paediatric cardiology worldwide have improved the survival rates for young children with hypoplastic left heart syndrome who undergo staged surgical palliation. These children, however, are at risk for life-threatening complications and parents are charged with the responsibility to monitor their children at home with minimal support and guidance from healthcare professionals once home. Design. A constructivist grounded theory study. Method. The study was conducted in 2006-2008. Participants were 25 parents (15 mothers, 10 fathers) and 28 grandparents (17 grandmothers, 11 grandfathers) of 15 young children (6 months-4·5 years) who had undergone the Sano surgical approach for hypoplastic left heart syndrome. The 53 interviews were digitally recorded, transcribed and analysed using open and focused coding, constant comparative analysis and memoing. Findings. A process of Parenting under Pressure emerged that was characterized by four overlapping and re-emerging phases: (1) realizing and adjusting to the inconceivable; (2) growing increasingly attached; (3) watching for and accommodating the unexpected; and (4) encountering new challenges. Conclusions. In-depth understanding of the phases of Parenting under Pressure provides direction for nurses to support parents of children who survive hypoplastic left heart syndrome. Interventions that help carers of children with complex health conditions move through the phases of our Parenting under Pressure process may help them safeguard the survival of their children, and their own survival as parents as they manage multiple demands. [ABSTRACT FROM AUTHOR]

This study described the role normalization played for parents related to their young children with hypoplastic left heart syndrome. The data source for this secondary analysis was 30 interviews with 16 parents. Three themes were identified: normalization, parental perception of child vulnerability, and optimistic appraisal. Parents engaged in a balancing act between worrying about their children's vulnerability and marveling at their children's survival, using normalization as a coping strategy. Nurses can collaborate with parents to determine strategies to restore a sense of normalcy to simultaneously promote child independence and parent well-being. [ABSTRACT FROM AUTHOR]

Aim. This paper is a report of a study of the process of grandparent involvement with siblings of preschool children with hypoplastic left heart syndrome. Background. An increasing number of grandparents are involved in parental or near-parental roles with their grandchildren. Most research concerns grandparent involvement due to parental issues (e.g. teenage pregnancy, mental illness, addiction). Some research addresses grandparent involvement when their grandchild is ill. Grandparents' 'double concern' for both their adult children and their ill grandchildren is reported in the literature. In this paper, we describe a third concern for grandparents: the sibling(s) of their sick grandchild. Method. Individual interviews were conducted in 2007 with 15 grandparents of six preschool children with complex congenital heart disease. Open and selective coding, categorization, and theoretical memoing were used to analyse the data. Findings. 'Stepping in as needed' and 'safeguarding relationships' were identified as two core categories related to grandparenting siblings of children with heart disease. Grandparents stepped into a parent role with toddler and preschool-aged siblings by attending to their daily care routines, recreational and play times, and relational needs while parents were occupied with their sick and hospitalized infants. Grandparents' concerted efforts to sustain parent-child and child-sibling relationships were also striking. Conclusion. Our findings extend the concept of 'double concern' to 'triple concern', and direct a research and practice focus towards the unexplored roles and needs of grandparents and siblings in families whose young children have life-threatening illnesses. [ABSTRACT FROM AUTHOR]

Hypoplastic left heart syndrome (HLHS) is a complex heart malformation that requires life-saving treatments. Parents experience numerous challenges as they learn to parent a child with complex care requirements. The following research question guided this qualitative study: Is the parenting process among parents of a child with HLHS characterized by exaggerated vigilant parental action, and if so, how does this influence parental response? Situated within a larger program of pediatric cardiology research, this study included data from two grounded theory studies with parents of children with HLHS. This secondary analysis involved a thematic content analysis using sensitizing concepts of uncertainty, protectiveness, support, and mastery of complex care. Transcribed data from 55 interviews with 24 mothers and 17 fathers of young children with HLHS were analyzed for relevant and recurring themes. In mastering skills required to care for their child with HLHS, parents contrasted what was in their hands with what was out of their hands. Vigilant parental actions were evident as parents became skilled at providing complex care. Parents said they were sometimes excessive in their vigilant actions. In retrospect they viewed this vigilance as appropriate in some situations but exaggerated in other situations. Understanding parents’ vigilant actions in response to their child’s complex care can guide health care providers’ interactions with families. Long-term follow up, both clinically and through research, is needed to assess the long-term consequences of exaggerated vigilant parental action on the child, parent, and family, and to determine and evaluate appropriate and timely intervention [ABSTRACT FROM AUTHOR]