Palestinian children's narratives about living with spina bifida: Stigma, vulnerability, and social exclusion

Background: Living with spina bifida in Palestine is a critical issue that might influence various aspects of the individual's life. It is a challenge for children, their families, and health care providers because it requires lifelong treatment and follow‐up of care provision. However, little focus has been placed on these children's perceptions about their daily life experiences with spina bifida. Purpose: To illuminate the lived experience of children with spina bifida in the West Bank, Palestine. Methods: A qualitative study was conducted using the phenomenological hermeneutical method to interpret the meaning of being a child with spina bifida in Palestine. Ten children with spina bifida, aged 7–18 years, were interviewed. The two local authors independently analyzed the Arabic transcriptions, whereas the two Swedish authors analyzed the transcriptions after translation to English. Finally, the four authors discussed their analysis and reached agreement about the themes. Results: Studying the children's experience with spina bifida helped us highlight their feelings, needs, and challenges. The findings were formulated into one main theme, Vulnerability and suffering due to social exclusion and stigma, which was grounded in three themes: Experiencing negative self‐concept, Experiencing vulnerability, and Obtaining a sense of security. These three themes were in turn derived from subthemes. Conclusion: The Palestinian children in this study faced physical, emotional, and psychosocial challenges, which negatively influenced their health and development. They were vulnerable and stigmatized, and they lived with a negative self‐concept. The findings could help health professionals, families, and caregivers to achieve a deeper understanding of what being a child with disabilities entails, and the findings may also serve as a platform for interventions that seek to promote these children's development and to enable them to experience childhood as a meaningful and positive process.We wish to thank all of the children who shared their experiences in this study

Conditions for parents' participation in the care of their child in neonatal intensive care – a field study

<p>Abstract</p> <p>Background</p> <p>To promote participation by parents in the care of their child in neonatal intensive care units (NICU), health professionals need better understanding of what facilitates and what obstructs participation. The aim was to elucidate conditions for parents' participation in the care of their child in NICUs.</p> <p>Methods</p> <p>A field study with a hermeneutic lifeworld approach was used and data were collected at two NICUs through participative observations and interviews with representatives of management, staff and parents.</p> <p>Results</p> <p>The results point to a number of contradictions in the way parents were offered the opportunity to participate in neonatal intensive care. Management and staff both had good ambitions to develop ideal care that promoted parent participation. However, the care including the conditions for parental participation was driven by the terms of the staff, routines focusing on the medical-technical care and environment, and budgetary constraints.</p> <p>Conclusion</p> <p>The result shows that tangible strategies need to be developed in NICUs aimed at optimising conditions for parents to be present and involved in the care of their child.</p

Communication between parents and neonatal healthcare professionals using pictorial support when language barriers exist – parents’ experiences

Purpose Families arriving in Sweden after being forced to flee their home need health care. Communication is a key component to establishing good care relations and becomes difficult when there are language barriers between families and healthcare professionals. In the context of neonatal care, communication is carried out with parents. The aim of the study was to describe parents’ experiences of communication with neonatal healthcare professionals and using pictorial support when language barriers exist. Method The study takes a qualitative approach based on seventeen interviews with parents who had experienced neonatal ward. Qualitative content analysis was used. Results The parents needed to communicate through supports, which caused distress and misunderstanding. The relationship between parents and the healthcare professionals affected the communication. Pictorial support was used to different degrees. Four categories were identified from the data analysis: Communicating through supports, Facing barriers in communication, Facing external influences and The need for a good healthcare relationship. Conclusion The present study is the first to describe parents’ experience with using the pictorial support developed in the project KomHIT Refugee and therefore fulfils the function of being a first evaluation of the pictures from parents’ perspective

Child healthcare nurses’ experience of communication with 4‐year‐old children during their visit to the child health care center

Objective:To illuminate child healthcare nurses’ experiences of communication with 4-year-old children during their visit to the child healthcare center.DesignA qualitative method, using data collected from individual interviews. Sample: Fifteen semistructured interviews with nurses working in a child healthcare center. Measurements:The results were analyzed using reflexive thematic analysis. Results:The analysis resulted in three themes and eight subthemes: Adapting to the child in the conversation, based on the subthemes Preparing for the visit, Listening in and observing, and Creating a welcoming environment; Combining strategies for the conversation, based on the subthemes Engaging the child, Using visual tools, and Parental involvement; and Challenges due to language barriers, based on the subthemes Using an interpreter and Parent acts as interpreter. Conclusion: Child healthcare nurses focus on the child when communicating and strive to create joy and a welcoming environment. The communication strategies employed during the visit include engaging the child directly, involving parents in the conversation, and balancing the parental involvement. Communication challenges related to language barriers are addressed, particularly during interpreter-assisted conversations. The study indicates a need for tailored strategies, collaboration, and sensitivity to ensure a child-centered approach.CC-BY 4.0</p

Assessment of health status in adolescents with spina bifida in the West Bank, Palestine: sense of coherence and self-perceived health

ABSTRACT Purpose: To assess self-perceived health and sense of coherence (SOC) in adolescents with spina bifida (SB) in the West Bank, Palestine, compared to a healthy reference group. Further, to assess the association between impairment levels in the adolescents with SB and their self-perceived health and SOC. Methods: Fifty adolescents with SB and 150 healthy adolescents completed measures of self-perceived health – the Pediatric Quality of Life Inventory (PedsQLTM 4.0) – and SOC. The rehabilitation center nurses identified the physical impairments of the adolescents with SB from their medical records, and classified them by impairment severity. Results: Adolescents with SB reported lower self-perceived health (PedsQL median 55, IQR 42–67), than the reference group (median 85, IQR 74–90), p < 0.001, and lower SOC (median 47, IQR 44–50) than the reference group (median 55, IQR 44–61), p < 0.001. Impairment level was inversely associated with both self-perceived health and SOC. Conclusions: The low self-perceived health and SOC among adolescents with SB in Palestine indicate the need for collaboration between policy makers and providers to improve these adolescents’ physical and social environment and to promote the rehabilitation services provided for them

Help overcoming pain early, a brief person-centred intervention for adolescents with chronic pain in a school setting, may improve symptoms of insomnia

INTRODUCTION AND AIMS: Chronic pain and symptoms of insomnia affect large numbers of adolescents and early interventions are prioritized. The aim of the current study was to evaluate potential secondary effects of the intervention, Help Overcoming Pain Early (HOPE), on symptoms of insomnia and self-rated health. METHODS: The study included non-randomized aggregated data from the active and control conditions in a previously conducted randomized controlled trial evaluating the efficacy of HOPE, after the participants in the control condition also had received the intervention. Symptoms of insomnia were assessed with the Minimal Insomnia Symptom Scale and self-rated health was assessed with one item, at the start of the intervention, post intervention, and at a six-month follow-up. Baseline variables included age, gender, pain localization, pain impact, school absence and symptoms of depression (assessed with the Center for Epidemiological Studies Depression Scale for Children). Inferential analyzes were performed using Linear Mixed Models (LMM). Effect sizes were evaluated by calculating Cohen's d. RESULTS: There were statistically significant improvements in symptoms of insomnia at the six-month follow-up, and statistically significant improvements in self-rated health at the end of the intervention and at the six-month follow-up. Effect sizes were small across outcomes and assessments. DISCUSSION AND CONCLUSION: Results illustrated significant but small improvements in symptoms of insomnia and self-rated health in adolescents with chronic pain following the HOPE intervention. Although caution is needed when assessing the findings, results illustrate the potential utility of an accessible brief early intervention in a school context

Föräldrars delaktighet i sitt barns vård vid neonatal intensivvård

When a newborn baby is in need of care in a neonatal intensive care unit (NICU), the care is assumed to be carried out not only by personnel but also by parents. To promote parental participation in this care, the parents are welcome to stay with their child whenever they wish. This thesis includes four papers and has the overall aim of contributing to the understanding of the significance of parental participation in the care of their child on the NICU, as well as the factors that influence, facilitate or obstruct that participation. The thesis is based on participative observations and interviews with parents and personnel at two NICUs. Paper I used a phenomenological hermeneutic lifeworld approach, while Papers II and III used a hermeneutic lifeworld approach, and Paper IV had a descriptive quantitative design. The results of this thesis show a general feeling of exclusion, with the mother experiencing a lack of interaction with the personnel and a sense of not belonging on the NICU. This has a negative impact on her maternal identity. However, when a continuous dialogue existed, and the mother was cared for as a unique person with unique needs, she experienced that she was participating, and this strengthened her maternal identity (I). The personnel on the NICU were ambivalent regarding the presence of parents, and set limits that included dictating conditions for parental participation. In the encounter with the parents they had difficulties in meeting worried parents and sometimes manifested an evasive attitude (II). Although the personnel had good ideals and intended to encourage parental participation, the care, including the terms of parental participation, was determined by the conditions set by the personnel, routines focusing on the care environment and medical technology, and budgetary constraints (III). The nature and extent of parental presence on the NICUs varied depending on the types of accommodations parents were offered. Those who stayed in parent rooms on the units showed more of presence with their children than did parents who stayed at a family hotel, at home or on the maternity ward. The main reason parents had for being with their child was a wish to take parental responsibility. Good treatment by the personnel was the primary factor facilitating parental presence, while parental ill health was the primary obstructing factor (IV). The results show a need to develop a family-friendly environment and tangible strategies to provide optimal conditions for enabling parents to be present and involved in the care of their child on a NICU. In addition, the personnel must be given the resources needed to make this possible