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Background: Pediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both children and their families. While most studies within PPC have focused on the ill child's QoL, less is known about parents' experiences of their own QoL. The aim of this study was to explore parents' QoL when their child has a life-threatening or life-limiting condition. Methods: The study has a qualitative, hermeneutic phenomenological design inspired by van Manen's phenomenology of practice. In-depth interviews were conducted with 12 fathers and 12 mothers of children living with cancer or a genetic condition. A deeper understanding of parents' lived experiences was obtained through an adapted photo elicitation method. Two rounds of thematic analysis were conducted, covering both the photo elicitation data, and interview data. Results: The findings describe four themes related to parents' QoL: living a normal life, giving my child a good life, having time to fulfill siblings' needs, and feeling heard and respected in the health and social care system. Conclusions: The complexity of elements shaping parents' QoL is evident. The interconnectedness between parents, the ill child, siblings, and interactions with the health and social care system, highlights the need to understand and address diverse aspects in enhancing parents QoL. [ABSTRACT FROM AUTHOR]

Purpose: To explore the recovery narratives of 13 young women who had fallen ill with severe Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), during childhood and adolescence, with the focus on what they had to say about their past experiences from the perspective of the present. Method: A qualitative narrative approach, informed by a phenomenological theoretical perspective, was adopted to explore what the women found significant and meaningful in their recovery process. Data analysis of in-depth narrative interviews was performed which are presented to readers through the stories of two particular participants. Results: The first story describes how one participant made a recovery by testing her body's tolerance and working to create a more confident self. The second story describes a complex exploration of possibilities for action in recovery, along with a struggle to make sense of setbacks and hold on to what has been gained. Conclusion: Recovering from ME/CFS emerges as an inter-personal, contextual, fragile and nonlinear process of homecoming, based on gradually rising bodily based self-knowledge. Illness slowly fades away into the background, and there is the prospect of a healthier tomorrow. [ABSTRACT FROM AUTHOR]

Background: The Dysphagia Symptom Questionnaire (DSQ) is a patient-reported outcome measure that assesses the frequency and severity of dysphagia in patients with eosinophilic esophagitis (EoE); however, it has only been validated for use in patients with EoE aged 11–40 years. This study examined the content validity of the DSQ and its usability on an electronic handheld device in children aged 7–10 years with EoE. Methods: In this qualitative, observational cohort study, participants were recruited to partake in two rounds of interviews. During visit 1, a cognitive interview examined EoE-associated concepts and the appropriateness of the DSQ for assessing dysphagia. Participants completed the DSQ daily for 2 weeks, and DSQ scores were calculated. After 2 weeks, a second interview assessed the usability of the DSQ on the electronic device and the burden associated with completing it daily. Results: Overall, 16 participants were included (aged 7–8 years: n = 8; aged 9–10 years: n = 8); most were male (75%) and white (81%), and the mean (standard deviation [SD]) age was 8.4 (1.3) years. The most commonly reported EoE-associated concept was 'trouble with swallowing' (63% [10/16]). Most participants reported that the questions were 'easy to complete' and 'relevant to someone with EoE and dysphagia'. Overall, participants reported understanding the questions and associated responses; however, further probing demonstrated inconsistent comprehension. Key challenging concepts included 'solid food', 'trouble swallowing', 'vomit', and 'relief'; some participants also reported difficulty differentiating between pain levels (31% [4/13]). Most caregivers reported that their child had experienced dysphagia (94% [15/16]); however, mean (SD) DSQ scores over the study period were low (7.3 [7.4]), suggesting infrequent and mild dysphagia, or a lack of comprehension of the questions. Most participants reported that completing the DSQ on the electronic device was easy (93% [14/15]) and they would be willing to complete it for longer than 2 weeks (73% [11/15]). Conclusions: Difficulties with comprehension and comprehensiveness suggest that the DSQ may not be sufficiently comprehensive for use in all patients in this population, and wording/phrasing changes are required before use in a clinical trial setting. [ABSTRACT FROM AUTHOR]

Training staff and volunteers is an important aspect of successful program implementation. This paper follows Part A of an evaluation of the Special Olympics Canada (SOC) Coaching Young Athletes Training course. Consistent with Kirkpatrick's four-level model of training evaluation, Part A evaluated program leaders' reactions to (level 1) and immediate learning from (level 2) the training. This Part B paper covers "on the job" behavior (level 3). In-depth semi-structured interviews were conducted with youth program leaders (n = 11) from eight provinces. Overall, participants felt that more training related to working with children with autism and promoting positive athlete behavior was needed. The findings also lead us to suggest that program leaders need to develop a more fulsome understanding of how to foster skill mastery, including how to practice the same skill in many and varied ways. [ABSTRACT FROM AUTHOR]

Background Parents usually make the decisions on COVID-19 vaccinations for their children under the age of 18. Objective To explore parents' perceptions and expectations of COVID-19 vaccination for children in Banda Aceh. Methods This study used a qualitative design with a phenomenological approach. Data were collected through in-depth interviews of 36 parents in Banda Aceh. The data were analyzed qualitatively through thematic analysis. Results Three themes were studied: (1) perceptions of parents willing to have their children vaccinated against COVID-19, (2) perceptions of parents who refused or delayed their children's vaccination against COVID-19, and (3) parents' expectations regarding COVID-19 vaccination in children. Benefits of the vaccine and government policy were among the reasons that parents were willing to have their children vaccinated. Vaccine safety concerns, lack of information, strong immunity, healthy lifestyle, and religious beliefs were the main reasons for parental refusal or delay in vaccinating their children. Reduced cases of COVID-19 and the end of the pandemic, not being infected, developing immunity, and no adverse events following immunization, faceto-face learning in schools, as well as increased education and socialization from the government, society that was critical and selective in receiving information were the expectation of parents regarding COVID-19 vaccination in children. Conclusion The perception of vaccine benefits and government policy influence parents to have their children vaccinated, while perception of vaccine safety concerns, lack of information, strong immunity, healthy lifestyle, and religious beliefs influence parents to refuse or delay their children being vaccinated. Parents' expectations regarding COVID-19 illness, their children's response to the vaccine and education, as well as the government's and society's roles during the pandemic are qualitatively elucidated. [ABSTRACT FROM AUTHOR]

With the rapid and widespread uptake of physical literacy (PL), there is potential for instructors to devalue participation of children who experience disability. The aim of the investigation was to understand how instructors who facilitate physical activity for children experiencing disability make sense of PL, and more specifically, how these instructors bring meaning to PL. Using interpretive phenomenological analysis, six instructors engaged in individual, semi-structured interviews. The study rationale was underpinned by the conceptual framework of ecological systems theory, which provided a foundation for the research, guided the structure of the interview guide, and facilitated a reflexive interpretation of the findings. Four themes were generated: Recognizing unique embodiments, The importance of context, Beyond physical competence, and Navigating PL's dominant discourse. The instructors' meaning of PL, impacted by relational and environmental influences, reflected the importance of movement skill development, while also embracing diverse embodiment and pedagogical flexibility by giving value to exploratory play, partial participation, family involvement, and willingness to abandon rigid lessons plans. [ABSTRACT FROM AUTHOR]

Background Effective management of hypoxemia is key to reducing pneumonia deaths in children. In an intensive care setting within a tertiary hospital in Bangladesh, bubble continuous positive airway pressure (bCPAP) oxygen therapy was beneficial in reducing deaths in this population. To inform a future trial, we investigated the feasibility of introducing bCPAP in this population in non-tertiary/district hospitals in Bangladesh. Methods We conducted a qualitative assessment using a descriptive phenomenological approach to understand the structural and functional capacity of the non-tertiary hospitals (Institute of Child and Mother Health and Kushtia General Hospital) for the clinical use of bCPAP. We conducted interviews and focus group discussions (23 nurses, seven physicians, 14 parents). We retrospectively (12 months) and prospectively (three months) measured the prevalence of severe pneumonia and hypoxemia in children attending the two study sites. For the feasibility phase, we enrolled 20 patients with severe pneumonia (age two to 24 months) to receive bCPAP, putting in place safeguards to identify risk. Results Retrospectively, while 747 of 3012 (24.8%) children had a diagnosis of severe pneumonia, no pulse oxygen saturation information was available. Of 3008 children prospectively assessed with pulse oximetry when attending the two sites, 81 (3.7%) had severe pneumonia and hypoxaemia. The main structural challenges to implementation were the inadequate number of pulse oximeters, lack of power generator backup, high patient load with an inadequate number of hospital staff, and inadequate and non-functioning oxygen flow meters. Functional challenges were the rapid turnover of trained clinicians in the hospitals, limited post-admission routine care for in-patients by hospital clinicians due to their extreme workload (particularly after official hours). The study implemented a minimum of four hourly clinical reviews and provided oxygen concentrators (with backup oxygen cylinders), and automatic power generator backup. Twenty children with a mean age of 6.7 (standard deviation (SD)=5.0)) months with severe pneumonia and hypoxemia (median (md) SpO2=87% in room air, interquartile range (IQR)=85-88)) with cough (100%) and severe respiratory difficulties (100%) received bCPAP oxygen therapy for a median of 16 hours (IQR=6-16). There were no treatment failures or deaths. Conclusions Implementation of low-cost bCPAP oxygen therapy is feasible in non-tertiary/district hospitals when additional training and resources are allocated. [ABSTRACT FROM AUTHOR]

Background COVID-19 continues to disproportionately impact families of children with developmental disabilities (DD). There is an urgent need to understand these families' experiences, particularly those that face economic or social marginalization. This qualitative study sought to identify the experiences of families of children with DD during the COVID-19 pandemic. Methods Using phenomenology, in-depth interviews (IDIs) were conducted with caregivers and health care providers of children with DD living in a large urban Canadian city. Interviews were recorded, transcribed, and coded using inductive coding methods by two independent coders. Transcripts were analyzed within and across stakeholder groups using thematic analysis. Results A total of 25 IDIs were conducted in 2020. 3 main themes and 7 sub-themes emerged related to the experiences of parents and health care providers for children with DD: families reported difficulty adhering to public health measures leading to isolation and increased parental stress; restricted access to in-person services worsened behaviour and development; and worsened household financial security in already marginalized families. Conclusions Our study demonstrates that families of children with DD have been negatively impacted by the evolving environment from the COVID-19 pandemic, and even more so in those who face social and economic challenges. Public health restrictions have impaired the daily lives of these families and our study suggests that limitations to accessing in-person services may have long-lasting impacts on the well-being of families of children with DD. It is imperative that the unique needs of these families be considered and centred for future interventions. [ABSTRACT FROM AUTHOR]

Purpose: Unmet oral health needs affect the quality of life of individuals, especially if they are already at a disadvantage like children with special health care needs. Strategies to mitigate these disparities in India's diverse healthcare settings have hitherto been largely ineffective. This study was aimed to assess the utilisation and barriers to the use of dental health services among children with special health care needs, against the background of a coordinated healthcare programme implemented in Nitte (Deemed to be University), Mangalore, India. Method: The study was conducted over a 6-month period, from September 2018 to February 2019. A mixed-methods design was concurrently employed for data collection. Utilisation of dental services was assessed quantitatively, and the barriers to dental services utilisation were assessed qualitatively through caregiver interviews, with a sequential data integration strategy. Results: The quantitative data revealed gross underutilisation of dental resources by children (only 16% availed some form of dental treatment), and the prevalence of avoidance behaviour (63% showed reluctance and did not turn up for appointments). Restorative needs formed the highest unmet dental component among the children (67% required secondary dental care). In-depth interviews with the children's caregivers revealed that the presence of cognitive barriers could have a direct effect on the time and quality of dental care delivered to their children. Conclusion: Cognitive barriers among caregivers appear to have a profound impact on the underutilisation of dental services in their children with special healthcare needs. These barriers may be addressed within the integrated healthcare programme and the dental curricula through provisions for continued individual and community dental education, and motivational efforts that simultaneously target the caregivers and their children with special healthcare needs. [ABSTRACT FROM AUTHOR]

Background: Parent experiences of caring for children with neurodevelopmental disease have been silenced and constrained by social, political and health influences. There is a need to co‐construct new meanings and interpretations of parenting a child with complex disabilities by having an increased understanding of the struggles and barriers for parents. Methods: A hermeneutic phenomenology approach was applied in this inquiry. Fifteen parents of children with rare neurodevelopmental diseases participated in semi‐structured interviews. Results: Parents experienced silencing or being silenced within interactions with health‐care and social care systems and providers. Interpretive thematic analysis revealed three insights: (a) parents experience a sense of disconnect and silencing as little is known or understood by health‐care providers about the experience of caring for children at home; (b) parents make strong efforts to be heard and acquire services within health and social systems as fighters, saviours and navigators; and (c) parents sacrifice themselves to the caregiving role and become therapists and caregivers to their medically fragile children at the cost of losing themselves as parents. Conclusion: An understanding of parents' experiences in caring for a child with a rare neurodevelopmental disease may provide insight to systemic health and social support challenges faced by families and mitigate appropriate and supportive policies and services. [ABSTRACT FROM AUTHOR]

The aim of this study was to determine the definitions of pain by pre-school age children and factors that affect these definitions. The study was conducted on children aged between four and six years (N=146) in the city of Karaman in Turkey. Qualitative and quantitative research design were used together in this study. This study's qualitative tradition method was phenomenologic research. The data were assessed using descriptive statistics and thematic analysis. The children's definitions of pain were found to be affected by their hospital and daily life experiences. The preschool age children generally defined pain in similar ways, and everything that made children feel pain made them think about it. Sometimes their family members, hospital equipment, and health staff lead them to think about pain. [ABSTRACT FROM AUTHOR]

School-age siblings experience a traumatic injury to their brothers or sisters in unique ways, yet little research has been undertaken regarding the sibling perspective. Understanding what it is like to be a well school-age sibling of a child with a traumatic injury is largely unknown. The aim of this study was to describe and understand the experience of being a well school-age sibling of a child recovering from a traumatic injury. Phenomenology was the method of inquiry used. Interviews were conducted with seven school-age siblings ranging in age from eight to 12 years, and were audio-recorded, transcribed, and analyzed using traditional qualitative techniques (Ely, Anzul, Friedman, Garner, & Steinmetz, 1991). Identification of patterns and themes common to the experience were identified and described. Two major themes that emerged were the changes and constants that this experience brought to the siblings. The self-expressed needs of the siblings important to health professionals regarding communication and individual identity are shared. Research-based implications for the clinical practice of pediatric nursing are presented. [ABSTRACT FROM AUTHOR]

Background: Registered Sick Children's Nurses and District Nurses employed at Child Health Care centres are in a position to help prevent childhood overweight and obesity. Prevention of this challenging public health threat could be improved through having a better understanding of how this group of nurses perceives childhood obesity. The aim of this study was to elucidate the conceptions of childhood overweight, including obesity, among nurses working in Child Health Care. Method: A qualitative study using a phenomenographic approach, based on open-ended interviews with 18 Child Health Care nurses (CHC-nurses) strategically selected from 17 Child Health Care Centres in the southern part of Sweden. Results: Four categories of description emerged from the data: Perception of childhood overweight changes, Overweight in younger children a neglected concern, Overweight a delicate issue and Importance of family lifestyle. The participating CHC-nurses conceived overweight in children, primarily obesity in children to be an extensive and serious problem which affects children, families and the surrounding society. Overweight in children was further perceived as a consequence of their parent's lifestyle and their awareness of the problem, which was considered by the CHC-nurses as a sensitive and a provoking issue. It was also perceived that overweight in children is not taken seriously during the pre-school period and that concerns regarding overweight in younger children were mainly about the appearance and not the health of the child. The CHC-nurses perceived that the proportion of overweight children has increased, which Swedish society and the CHC-nurses have adapted to. This adaptation makes it difficult for CHC-nurses to define those children who are overweight. Conclusion: CHC-nurses provide a comprehensive and complex picture of childhood overweight, which includes several difficulties dealing with this issue. Attention to CHC-nurse's conceptions of overweight in children is important since it can affect the parent-nurse relationship and thereby the nurse's, as well as the parent's efforts to influence the children's weight. It is suggested that CHC- nurses should work with person centered counseling and empowerment concerning parent to child relations in cases involving overweight. [ABSTRACT FROM AUTHOR]

Objective: Disease and hospitalization can be the first crisis that a child encounters. The aim of this study is to reveal a clear picture of the meaning of hospitalization in children, to show the experience and behavior of hospitalized children and to discover the meaning and understanding of hospitalization in them. Methods: This study is a phenomenology study of qualitative research within the framework of Husserl Eidetic phenomenology through comprehensive interviewing. The objective group consisted of children 7-11 years old and their parents hospitalized in the children's ward of 22 Bahman Hospital and the surgery ward of 15 Khordad Hospital during the study (2008). Method of selection of participants was as follows: having experience of hospitalization, having ability to answer the questions, and being volunteered. Sample size was detected by data saturation. In the method of sampling, an object group of 20 (12 children and 8 parents) were chosen and interviewed. The Seven Colaizzi Stages were used for analysis of data. Findings: The analysis of the interviews and the written narrations of the participants led to the extraction of 6 inner themes consisting of sickness, environment, reciprocal relationship, parents' personal problems, mental and emotional matters and a spiritual dimension; all of which define a specific aspect of the experience of hospital in children and parents. Conclusion: The experience of hospitalization in children can be considered as a process of effort for returning to health and, on the whole, the regaining of the individual's status in the world. Nurses can ease this process by showing the importance of experience and feelings of individuals at the time of hospitalization and help people to adapt themselves to their new surroundings. This matter can enable the nurses to utilize methods of helping in the adaptation of individuals and thus guide the unique powers present in every individual to ease and quicken recovery. [ABSTRACT FROM AUTHOR]