Pianificazione condivisa di cure: quando il meglio riesce a essere amico del bene

Background: Children with cancer experience pain throughout their cancer trajectory, which has short- and long-term negative consequences, both physically and psychologically. Treatment advances have increased ambulatory care, enabling children to spend more time at home. This leads to a shift in pain management responsibility from healthcare professionals who have experience in pain management, to parents, most of whom do not. Little is known about parents’ pain management abilities at home. Aim: To understand how parents of children with cancer manage their child’s cancer pain at home. Methods: Guided by the Theory of Planned Behaviour, a convergent, parallel mixed methods design was used for the primary purpose of complementarity. Participants were parents of children with cancer on active treatment, recruited from one tertiary cancer centre in the South of England. Convenience sampling was used to recruit participants to complete surveys and pain diaries. Purposive sampling was used for interviews. Surveys measured parents’ attitudes toward pain medications and their misconceptions regarding pain assessment. Pain diaries gathered baseline data on pain intensity, cause, location, and parent interventions at home. Interviews enabled deeper understanding of children’s pain manifestation, as well as parents’ pain assessment and interventions. Surveys and pain diaries were analysed using descriptive and inferential statistics. Thematic analysis was used to analyse interview data. Each dataset was analysed separately and then integrated. Results: Integration of the datasets revealed that most of the time, children were not in pain at home. However, most children experienced episodes of clinically significant pain. Parents combine different types of information to effectively assess their child’s pain at home. Parents frequently under-medicated their child’s pain but used a variety of non-pharmacological interventions to manage their child’s pain at home. Paracetamol, ibuprofen, codeine, and morphine administration all have undesirable consequences for children with cancer who frequently found pharmacological interventions to be unpalatable. This left parents with an “empty toolbox” of pain management interventions which they restocked with non-pharmacological interventions. Contribution to knowledge: Using mixed methods, this research took a holistic approach to investigating parents’ management of children’s cancer pain at home. This research suggests children with cancer have heterogeneous pain trajectories but due to the unpredictability of pain at home, it is important all parents of children with cancer are prepared for their pain management role. Parents’ use different types of information to assess pain. This constitutes a bundled approach to pain assessment. This approach may be helpful in clinical and research contexts. This research is the first to outline practical barriers to pharmacological interventions and the subsequent importance of non-pharmacological interventions for parents managing their child’s cancer pain at home.

To explore parents' experience of having a child diagnosed with Type 1 diabetes, managed at home, and their first year following diagnosis. A qualitative, longitudinal study based on 40 in-depth interviews with parents of 20 children with newly diagnosed Type 1 diabetes managed at home from diagnosis in South Wales. Many parents were alarmed by the speed of diagnosis following the gradual progress of their child's symptoms. The provision of timely, adequate information was important to all parents. Although five parents had initial concerns about going home, all parents were subsequently pleased their children had not been hospitalized. Home management enabled parents to integrate diabetes management into the family's normal lifestyle from diagnosis. Professional support, particularly accessible telephone advice, was valued by and reassured parents. Parents experienced a loss of spontaneity, a continuing fear of hypoglycaemia and did not want their child to feel different to other children. Acutely aware of the seriousness of diabetes, they did their utmost to achieve optimal glycaemic control but felt that diabetes could not 'dominate' if they were to lead a 'normal' life. The experience of parents in this study suggests that parents of children with newly diagnosed diabetes are able to cope successfully when given the opportunity to start treatment at home. Therefore, if children with diabetes are clinically well at diagnosis, this study supports home management as a system of care from the parents' point of view. These findings are relevant to clinicians, policy makers and health service managers involved in planning and providing paediatric diabetes care.

Learning disabilities: Interventions and clinical issues

This article forms part of an extensive literature review informing a study exploring the parental experience of home management of children with newly diagnosed diabetes. As a diagnosis of childhood diabetes may represent a major stressor event for parents, selected theories and models of stress and coping are discussed. These suggest that, influenced by a variety of interpersonal and environmental factors, parents may approach the process of coping in different ways. Coping strategies employed by parents of children with diabetes elicited from the literature are categorized according to a psychological theory of stress and coping. Normalization, a coping strategy used by parents of chronically ill children, is discussed in relation to childhood diabetes. To conclude, implications for nursing practice are outlined and suggestions made about how parents may be assisted to cope with the demands of having a child with diabetes.

Nonrespiratory symptoms before loss of asthma control in children

Family management experience of parents of children with chronic heart failure: A qualitative study

Ataxia telangiectasia (A-T) is a rare genetic and progressive condition, primarily affecting the neurological, immunological, and pulmonary systems. In the absence of a cure, people living with A-T require co-ordinated multidisciplinary care to manage their complex needs. This often leads to families working with a range of different professionals and feeling burdened by the amount of information and coordination of care that they manage. With the aim to inform the co-production of a family-owned healthcare pack to promote person-centered care and self-management, this study explored the views of children with A-T and parents of children and young people with A-T about the utility, acceptability, design, and content of this pack. A total of two children and eight parents participated in one pilot interview and three focus groups. Using the Framework Method of analysis, three themes were generated offering an insight to the range of participants' views. The first theme, 'accessing, managing, organising, and sharing information with others', broadly highlighted the need for a pack as a valuable resource in the absence of coordinated care and a centralised system of record keeping and information sharing. The second theme, 'pack content', suggested that the pack may serve the dual purpose of storing and retrieving information and helping to communicate and work with other professionals. The third theme, 'design features', investigated the design of the pack and the differences in the views of children who wanted the pack to look like a magazine style booklet, and the parents who preferred an electronic pack or an app. This study is an important contribution to the current understanding of the experiences of care and management of A-T from the point of view of children with A-T and their parents. Families with a child with A-T struggle with communication and information sharing across and between different professionals. My A-T Pack is a step towards providing families a viable resource for effective record keeping, symptoms management, and information sharing with relevant professionals involved in the care and management of their child's condition.

Devaluing experience in land management: A personal viewpoint

Sickle cell crisis, or vaso-occlusive crisis, is a painful complication of sickle cell disease that occurs in adolescents and adults, which is considered the most common reason these patients seek medical attention in an emergency room. Despite the high prevalence of sickle cell disease in the Jazan region, Saudi Arabia, there hasn’t been a study looking at nursing students’ knowledge about sickle cell disease and home management and prevention of vaso-occlusive crises associated with sickle cell disease. Most of those focused on the investigation of the public, parents of children with sickle cell disease, school students, and patients with sickle cell disease. Therefore, this study aims to assess the level of knowledge about home management and prevention of vaso-occlusive crises among Saudi nursing students at the Aldayer University College, Jazan University, Kingdom of Saudi Arabia. A descriptive cross-sectional design was used in this study that involved 167 nursing students. The study revealed that Aldayer nursing students had adequate knowledge about the home management and prevention of sickle cell disease vaso-occlusive crises.

Historically, children with diabetes have been hospitalized at diagnosis, but increasingly, newly diagnosed children are being cared for entirely at home. The management of this chronic condition usually involves the whole family, with children often taking responsibility for much of their own care. However, this article focuses specifically on the needs of parents, forming part of an extensive literature review informing a study exploring parents' experience of home management and coping over the first year with childhood diabetes. A search of the literature revealed a scarcity of evidence overall about hospitalization or home management from a parental perspective, and none in relation to childhood diabetes. This article provides a critical appraisal of the appropriateness of these two approaches to care for parents of children with newly diagnosed diabetes. First, a brief introduction to home management in childhood diabetes is followed by an examination of the small amount of research found about home management and hospitalization from the point of view of parents. Then, the possible benefits and disadvantages of both approaches are discussed and subsequently scrutinized in the context of childhood diabetes. Finally, preliminary conclusions are drawn and suggestions made for the direction of future research in this area.

BackgroundChildhood obesity is a public health concern in Riyadh, Saudi Arabia, where cultural and social factors shape parental perceptions. This study explores how Riyadh-based parents view childhood obesity.MethodsA hybrid approach to thematic analysis was employed, combining deductive and inductive coding to allow for emergent themes directly from the data. Semistructured interviews were conducted with twelve parents in Riyadh, Saudi Arabia, whose children were identified as overweight or obese. The data were analysed to identify key themes related to parental perceptions and childhood obesity management.ResultsFour themes emerged from the data: (1) perceptions towards childhood obesity; (2) perceived barriers to weight management; (3) perceived benefits to weight management; and (4) perceived motivators to addressing obesity.ConclusionParents in Riyadh often view childhood obesity as a sign of health due to deep-rooted cultural norms. However, as they witness health and social challenges in their children, such as bullying or physical difficulties, their perceptions begin to shift. This study highlights the role of cultural beliefs, lifestyle constraints, and limited institutional support as barriers to managing childhood obesity. Addressing these factors through awareness initiatives and community support could empower parents to more effectively promote healthier behaviours for their children, ultimately contributing to improved health outcomes.

<b>Introduction:</b> Recently, the survival rate of people with pulmonary arterial hypertension (PAH) increased and these patients could now be considered living with a chronic condition. In this scenario, home management’s role becomes more relevant as nurses are best placed to coordinate care through patient illness trajectory. <b>Aim:</b> To identify and synthesize the experiences of home management performed by nurses of patients with PAH. <b>Methods:</b> Pubmed and Cinahl databases were searched to review quantitative and qualitative studies describing nursing interventions at PAH patients’ home. Data were synthesized narratively. <b>Results:</b> Two studies evaluated specific interventions of home management performed by nurses. Both studies emphasized the nursing role in assessing patients’ needs. One study focused on the transitioning of medication and nurses’ role in assessing the side effects during the transitioning. The other describes a telephone follow-up delivered to patients treated in a specialist centre. <b>Conclusions:</b> Literature about home management of PAH patients is scarce, and no evidence about nursing interventions is present. New approaches to deliver home care to PAH are crucial to fill the gap between hospital and community care. Expert PAH nurses could be the perfect link with clinical nurse specialists to continue providing a useful contact point for local healthcare providers. Future studies are necessary to evaluate the role of nurses in the home management of PAH patients.

To explore challenges parents of children with cancer encounter while providing complex medical care at home. Design: Cross-sectional convergent mixed-methods study. Questionnaire and open interviews that mirrored and complemented each other. Parents (n = 32), with no prior medical training, were expected to remain constantly vigilant as they monitored and managed rapidly changing situations. Regardless of time from diagnosis, they detected a mean of 3.3 ± 1.4 (0-6) symptoms, reported administering up to 22 daily medications, including cytotoxics, narcotics and injections, and dealt with many related challenges. Parents described needing responsive communication channels, especially when dealing with bleeding and infection emergency situations during off-hours. Findings highlight the constantly shifting demands when managing a child with cancer at home. Educational programmes that address parental needs throughout treatment, tailored to protocol changes and individual circumstances, should be expanded and further developed. Parents need continual education regarding home management throughout their children's illness and treatment. This study addresses challenges parents of children with cancer encounter while providing complex medical care at home. The findings demonstrated that parents, responsible for administering numerous medications via various routes and managing symptoms and side effects, did not feel confident performing these tasks regardless of time from diagnosis. Nurses should adapt ongoing parental education regarding complex medical tasks, symptoms, side effects, emergency detection and management for children with cancer at home. The study adhered to the Mixed Methods Appraisal Tool (MMAT) and STROBE reporting method. Parents of children with cancer participated in the design and questionnaire validation.

تهدف الدراسة الحالية إلى استقصاء الضغوط المهنية لمعلمي التربية الخاصة في کل من البيئة الثقافية السعودية والمصرية، ومعرفة الفروق في نوعية تلک الضغوط في هاتين البيئتين تبعا لمتغيرات فئة الإعاقة التي يعمل معها المعلم (عقلية وتوحد/ بصرية/ سمعية)، وجنس المعلم (ذکر/ أنثى)، وسنوات خبرة المعلم (أقل من 5 سنوات/ 5 سنوات فأکثر). وأجريت الدراسة على عينة قوامها (224) معلما ومعلمة من معلمي التربية الخاصة بجمهورية مصر العربية والمملکة العربية السعودية، واستخدمت الدراسة مقياس الضغوط المهنية لمعلمي التربية الخاصة (إعداد الباحث)، ولتحليل البيانات تم تطبيق اختبار ت، وتحليل التباين المتعدد MANOVA، واختبار شيفيه. وأظهرت النتائج أن أهم الضغوط في البيئتين السعودية والمصرية تمثلت في خصائص الأطفال ذوي الاحتياجات الخاصة، والعلاقة بأولياء أمورهم، ثم فطبيعة وأخيرا العلاقة المهنية بالزملاء والمدراء. وأظهرت ايضا وجود فروق دالة إحصائيا في الضغوط المهنية لمعلمي التربية الخاصة تعزى لمتغيري البيئة الثقافية وفئة الإعاقة لصالح المعلمين العاملين في البيئة المصرية، ولصالح معلمي فئة الإعاقة السمعية، وعدم وجود فروق دالة في التفاعل بينهما. ووجود فروق دالة إحصائيا تعزى لمتغيري البيئة الثقافية والجنس لصالح العاملين في البيئة المصرية، ولصالح المعلمات في بعد بيئة العمل، وعدم وجود فروق في التفاعل بين المتغيرين. ووجود فروق دالة إحصائيا تعزى لمتغيري البيئة الثقافية والخبرة لصالح العاملين في البيئة المصرية ولصالح ذوي الخبرة القصيرة. وتضمنت الدراسة مناقشة وتفسيرا لتلک النتائج، وخرج ببعض التوصيات والبحوث المقترحة. This study aimed at studying professional stress facing special education teachers in the Egyptian and Saudi cultural environments and its relation to some variables including category of children's disability, teacher's gender and experience. The study was applied to 224 special education teachers in Egypt and Saudi Arabia. It used the Special Education Teachers' Professional Stress Scale which was prepared by the researcher. T-test, MANOVA, Scheffe tests were used in statistical analysis of data. Results show that the most important stress in both Egyptian and Saudi environments are characteristics of children with special needs, teachers' relations with children's parents, environment, nature and finally the teachers' relations with their managers and colleagues. Results also show that there were statistically significant differences in professional stress attributed to the cultural and the category of children's disability in favour of the Egyptian and teachers working with children with hearing disability, but there were no statistically significant differences that can be attributed to the interaction between the two variables. There were also statistically significant differences attributed to the cultural and the teacher's gender in favour of teachers working in the Egyptian and in favour of females on the work environment dimension, but there no statistically significant differences that can be attributed to the interaction between the two variables. There were statistically significant differences attributed to the cultural and the teacher's experience in favour of the Egyptian and teachers with shorter experience. Results were discussed and explained. Recommendations are included.

We assumed that the parents of children who are undergoing treatment for leukaemia experience practical challenges in taking care of the side effects of chemotherapy. In this study, the effectiveness of a structured teaching programme on knowledge about home management of chemotherapy side effects among parents is determined. Furthermore, the study also aimed at finding an association between the pre-test knowledge score of parents and selected baseline information of subjects as well as children. A quantitative, experimental research approach was used to assess the effectiveness of a structured teaching programme on enhancement of mothers’ knowledge about childcare for leukaemic children in the Cancer Research Institute, Sri Raghvendra Hospital, India. A teaching intervention was given, and in the post-test period the same structured knowledge questionnaire was used. Practise was assessed using the interview method by direct observation. Post-intervention, the education of the mother and sex of the child were significantly associated with the knowledge and practise of mothers regarding their care of children with leukaemia. Before the intervention, many more mothers had inadequate and moderate knowledge than had adequate knowledge. The study found that the total number of mothers with moderate and adequate knowledge increased significantly. Overall, the mean knowledge score increased significantly to 18.75 after the intervention. From the study results, it can be concluded that a structured teaching programme on knowledge about home management of chemotherapy side effects was found to be effective in increasing the knowledge among parents of children who receive chemotherapy.