Parents of children with autism have been identified across research as having unique experiences in comparison to parents of children with other disabilities. The focus to date has been on identifying factors impacting on parental well-being post-diagnosis, with some more recent studies looking more specifically at parent experience of the diagnostic process. However, there is less literature that explores the impact that this diagnosis may have on parental perspectives of, and aspirations for, their child. In addition, within this current research, little is known about how parents of toddlers make meaning of their situation pre and post-diagnosis, with limited literature so far that looks at the influence that geographical location may have on this. As an exploratory, qualitative study of parent experience of early autism diagnosis in Massachusetts and central Scotland, this thesis aimed to bridge this gap by investigating parents’ experience in these early years, in two similar, yet contrasting settings with significant differences in policy and practice. Utilising Blumer’s (1969) principles of symbolic interactionism, this thesis examined the factors that had an effect on participants’ meaning making, drawing on extended premises of SI (Snow, 2001; Stryker, 2008) to explore the extent to which structural and social influences in each country may have impacted on this. It looked at the similarities and differences between parents’ experiences of: the autism diagnostic process; access to, and engagement with, post-diagnosis services; changes in perceptions of autism over time; and whether perspectives of, and aspirations for, their child altered since diagnosis. All 18 participants (14 mothers and 4 fathers) had a child (13 boys and 5 girls) under 5 years old with a diagnosis of autism. Data were generated through semi-structured interviews, using open coding to group initial categories, before moving into interpretive, inductive analysis to identify wider themes. Findings highlighted key differences between policy and practice, which influenced parent experience in a number of ways. In particular, the differences between the services and support available to young children with autism and their families in each location appeared to have a significant impact on participants. However, this study also concluded that, in spite of differences in policy and practice, there were also a number of similarities in the ways in which parents made meaning and sense of their child’s diagnosis. Interaction with other parents (both face to face and online) had a strong influence on this, alongside parents’ exposure to media portrayals of autism, which were similar in both locations. Conversely, in spite of their experiences with a wide range of professionals, these interactions had a more limited effect overall on the perspectives that parents developed of their child. In addition, in spite of recognising previously held beliefs regarding stigma and stereotype in autism, all parents in this study actively rejected these perceptions after receiving a diagnosis for their child. Overall, data reflected a shared understanding of autism that crossed geographical and structural boundaries, with parents from both countries experiencing the same hopes, aspirations and fears for their child’s future. These findings may have implications for policy considerations and for services in both locations delivering pre and post-diagnostic support, with potential for more positive outcomes overall for those receiving an early diagnosis for their child.

Deliberate self-harm are a growing problem among young people in Sweden. It's not only the child that suffers from the behaviour, even the whole family. Parent´s need the right support from the healthcare staff for their own wellbeing, but also to be able to give good support for their child. Par-ent´s experiences are of importance for the nurse in the healthcare of the child and their families. The aim of this study was to describe parent´s experiences of living with a child with a deliberate self-harm behavior. In this literature study ten qualitative articles were analyzed using the method of Friberg (2012). Eight articles were found by a systematic search and two articles were found in an unsystematic search. This study showed four main themes and ten subthemes. Main themes were parent´s experience of support, parent´s experience of different feelings, parent´s experience of fam-ily relations and parent´s experience of parenting. Subthemes were to experience lack of support from healthcare staff, to need support from the environment, to feel guilt and shame, to feel concern and fear, to experience chock, to communicate with their child, to experience a different relation-ship in the family, to maintain trust in the relationship between parent and child, wanting to protect their child, to feel unsecure in their parenting. Conclusion were that parent´s need better support from the healthcare staff and from others in their environment. Nurses need more knowledge about parent´s experiences to be able to understand their needs and to be able to support them.

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Background One of the most stressful and frightening healthcare experiences for a parent is a cardiorespiratory arrest of their child. Each year, almost 16,000 American children experience cardiorespiratory arrest and attempted resuscitation in hospitals. This experience is traumatic for parents and may lead to a post-traumatic stress response as they fear their child will die or be seriously harmed. Post-traumatic stress response can ultimately lead to deficits in family functioning. There is limited knowledge about the experience of parents during a child’s resuscitation. We do not know how parents respond to a child’s resuscitation or if family functioning is affected after the event. Parent stress and family functioning after a child’s resuscitation has not been studied. While the available research on parents’ experience at their child’s resuscitation in the Emergency Department and Pediatric Intensive Care Unit provides some information, there is a gap in the knowledge about the experience of parents in general pediatric care units and Labor and Delivery areas. In order to develop interventions that support parents’ experience during emergency resuscitation of their child in the hospital setting, it is important to know parents’ experience in all settings where resuscitation of a child happens. Objectives The purpose of this qualitative descriptive study was to elucidate the experiences of parents during their child’s resuscitation and the potential consequences this traumatic event has on parental stress and family functioning after the event. Specific Aim 1: Describe the experiences of parents during the resuscitation of their child in the Emergency Department, Pediatric Intensive Care Unit, General Pediatric Care Unit, Neonatal Intensive Care Unit or Labor and Delivery. Specific Aim 2: Explore parent and family outcomes after parents experience a child’s resuscitation in the Emergency Department, Pediatric Intensive Care Unit, General Pediatric Care Unit, Neonatal Intensive Care Unit or Labor and Delivery by exploring parents’ stress response and family functioning at least one month after the experience using Impact of Events Scale – Revised (IES-R) (post-traumatic stress) and Family Problem Solving and Communication Index (FPSC) (family functioning) and Family Distress Index (FDI) (family functioning). Methods The setting for this study was a 280 bed Midwestern children’s hospital Emergency department (ED), Pediatric Intensive Care Unit (PICU), Neonatal Intensive Care Unit (NICU), Labor and Delivery (L&D) and inpatient pediatric units. Participant inclusion criteria were parents or legal guardians, age 18 or older and English speaking whose children experienced resuscitation within the hospital in a variety of settings. Participants included both parents who were present in the room during the resuscitation and those who were not in the child’s room but nearby. For the purpose of this study, resuscitation was defined as any emergency intervention required providing respiratory or cardiovascular support, including positive pressure airway support, ventilation, cardiac compressions and / or emergency medication administration. Qualitative descriptive methodology, using semi-structured qualitative interviews to generate data was used to provide a deeper understanding of the experience of parents while present during their child’s resuscitation. A small collection of quantitative survey data provided additional information about stress reactions of parents and family functioning at least one month after the event. In this study, measures of stress (Impact of Events scale) and family functioning (Family Problem Solving and Communication Index) and Family Distress Index) were assessed at a time between one and twelve months after the resuscitation experience. Analysis was completed with thematic analysis of the qualitative data and descriptive statistics were described for the quantitative data. Results Parents describe a sense of overwhelming chaos during their child’s resuscitation. However, they have a need to be with their children during this traumatic event. Some parents enter into the experience with an alternate reality, with disbelief that things are as bad as they look. Other parents are thrust abruptly into the experience as they are a participant in the resuscitation that starts outside of the hospital setting. As the experience unfolds, despite the overwhelming, scary experience, parents have identified things that help them get through the experience. Mothers who experience their newborn infant’s resuscitation in the delivery room have a different experience; they feel as though they were physically present, but unable to be a part of the experience. These women describe their unmet expectations. After parents experience their child’s resuscitation, some identify the event as a turning point in their lives that changed them as parents and as a family; some report a new outlook on life or even changed relationships with their significant other. Some parents get to successful resolution of their feelings after the experience, yet others are left feeling anger and resentment. Some parents even wonder if they could have done something different to effect a different outcome. While the outcomes for some parents and families are positive and show that families are stronger after the experience, it is evident that parental post-traumatic stress after a child’s resuscitation, as well as family distress are potential consequences for parents and families after experiencing a child’s resuscitation. Conclusions A thematic analysis of qualitative data about parents’ experience during their child’s resuscitation resulted in three overarching themes including “Overwhelming chaos”, “Getting through it”, “Cognitive presence” and “Joy mixed with heartache”. Each overarching theme was supported with several subthemes. In addition, parent stress and family functioning outcomes were described in two major themes of “Turning point – It changes you” and “After the experience – Resolution vs non-resolution”. Analysis of the quantitative survey data from the IES-R, FPSC index and FDI combined with the qualitative thematic analysis indicate that parent post-traumatic stress and family distress is a potential consequence for families who experience their child’s resuscitation. This study provides foundational knowledge of parent stress and family functioning after a child’s resuscitation and demonstrates that this is an important phenomenon for further study. In addition, the parents’ experience reported in this study also lays a foundation for development, standardization and implementation of interventions to support parents during and after this experience.

Background: Every year, hundreds of children are diagnosed with cancer. This affects the whole child's family, which means that the nurse during the child's cancer care must be there to support the whole family. The parent needs to feel involved in the child's care and have a trusting relationship with the nurse. As a parent, you have to go through a great deal of suffering, which requires the nurse to adapt her support to the needs of the parent and the child. Aim: The purpose of this study was to shed light on how a parent with a child with cancer experiences the nurse's support during and after cancer care. Method: A literature-based study was conducted. Ten qualitative articles were selected and analyzed, based on Friberg's analysis step model. This participates in three categories and a total of eight subcategories. Results: The results showed that the nurse's support was an important factor in an attempt to reduce the parent's suffering. This support could be divided into three categories: Cooperation between nurse and parent, parent's need for support and accessibility and communication. Conclusion: Pediatric cancer affects the whole child's family, and the parent is in great need of support to deal with their suffering and at the same time support their child. During their child’scancer care, the parent goes through many feelings of no longer recognizing their own child, as well as being helpless in their parenting role. By the nurse working in an empathetic and inclusive way where there is an opportunity to build meaningful and strengthening relationships between the parent and the nurse and that the parent's needs are also met, the parent's suffering can be reduced with the help of the nurse's support.