Free topic on anything related to nursing:(Prader-Willi Syndrome Essay Example)

• Introduction
• State the problem
• Hypothesis(Prader-Willi Syndrome Essay Example)
• Literature review
• Experiment design
• Population, sample size, and control group description
• Methods for data analysis (types of charts, etc)(Prader-Willi Syndrome Essay Example)
• Budget proposal (salaries of director and assistants, cost of transportation, cost of equipment, cost of materials, cost of office space, etc)
• Bibliography (APA)(Prader-Willi Syndrome Essay Example)

Prader-Willi Syndrome Essay Example-Sample Solution

A Qualitative Study Investigating School Nurses’ Experience Caring for Children with Prader-Willi Syndrome

Prader-Willi Syndrome (PWS) is a genetic disorder that develops due to the loss of paternally-inherited 5 q11-q13 chromosome. The incidence of PWS in the USA is estimated at one in every ten thousand to thirty thousand births (Bohonowych et al., 2019). The prevalence of PWS is approximately 10000-20000 individuals in the USA. The condition affects gender and ethnicity equally (Bohonowych et al., 2019). PWS is not caused by point mutation of genes, suggesting that PW is a contagious gene syndrome associated with an absence of more than one gene. Besides, the phenotypic expression of PWS is variable(Prader-Willi Syndrome Essay Example). PWS is associated with a constellation of symptoms that impacts the quality of life of the affected individuals and their families. However, PWS is known to impact hypothalamic function, affecting multiple systems throughout the body (Angulo et al., 2019). Noticeable behavioral signs of PWS include aggression, compulsive and obsessive behaviors, and skin picking (Ragusa et al., 2020). Affected individuals tend to develop the condition in adulthood. Symptoms such as distinguishing facial features, short stature, scoliosis, obesity, and strabismus are common with PWS. Other symptoms presented by individuals diagnosed with PWS include gastric perforations, abnormal swallowing, bowel obstructions, and choking.(Prader-Willi Syndrome Essay Example)

Children diagnosed with PWS experience cognitive and developmental delays, neurocognitive abnormalities, and unique behavioral patterns. For instance, the primary presenting PWS is hypotonic, associated with feeding difficulties, lethargy, decreased movement, and inability to thrive (Bohonowych et al., 2019). However, the defining feature of PWS in younger children is the change n appetite over time and hyperphagia, such as excessive appetite in early childhood. Infertility, sleep abnormalities, and incomplete pubertal development are present during adolescence and adulthood. The loss of 5 q11-q13 chromosomes occurs through three processes; deletion (75% cases), maternal uniparental disomy (25% cases), or imprinting defect (Anglin, 2017). Although the causes of PWS are known, there is no cure for PWS and treatment interventions aimed at managing symptoms. The lack of a cure is associated with the complexity of the condition’s etiology. This research aims to evaluate school nurses’ experience caring for children with Prader-Willi syndrome.(Prader-Willi Syndrome Essay Example)

Most studies have been conducted to determine the efficacy of various interventions for pediatric PWS. These studies have consistently identified PWS as a rare genetic disorder with no cure (Rubin et al., 2019; Dimitropoloulos et al., 2017; Benchikhi et al., 2019). Moreover, studies have associated various pharmacological and non-pharmacological interventions for preventing and improving PWS (Rubin et al., 2019; Dimitropoloulos et al., 2017; Benchikhi et al., 2019)(Prader-Willi Syndrome Essay Example). Despite understanding the impact of PWS on development milestones, motor functions, and physical activity, there is limited study on school nurses’ experiences caring for children diagnosed with PWS. Nurses play a crucial in care provision, and their observations of significant children’s problems would guide the identification of children with undiagnosed PWS and the development of more effective interventions for children with PWS.(Prader-Willi Syndrome Essay Example)

School nurses are responsible for helping and treating children to preserve their health. However, the extent of school nurses’ role in PWS management is yet to be identified. Furthermore, the unmet needs of children diagnosed with PWS justify the need for a multidisciplinary approach to care with collaboration between care homes, academic centers, and parent groups. Multidisciplinary clinical centers offer comprehensive support to children with PWS through patient and family-centered care models (Duis et al., 2019). This suggests that improved communication between different settings where diagnosed children spend their day is crucial in providing quality care.(Prader-Willi Syndrome Essay Example)

No studies have been done to evaluate the experiences of school nurses’ experience caring foot children with PWS. A 2016 workshop on the status of science on mental health research revealed that PWS-associated ill health and maladaptive behaviors significantly impact the quality of life and their caregivers (Schwartz et al., 2016). Nurse caring is a quality indicator in healthcare and is central to the positive outcomes of patient’s well-being. School nurses interacting with children diagnosed with PWS can understand and articulate relevant issues crucial to developing effective management for PWS (Akansel et al., 2021). Therefore, further research into this area is necessary.(Prader-Willi Syndrome Essay Example)

Statement of the Problem

PWS is a complex condition with limited empirical data on its treatment and management. Affected children experience various symptoms affecting their lives and daily activities. The condition is disabling and requires constant management and support to ensure that affected children lead normal lives. Most studies have been done to determine the effective techniques for managing PWS, which include early diagnosis and a multi-professional management approach. However, a few studies have explored patients’, caregivers’, and industry’s perspectives on the effective management of PWS. School-going children are more disadvantaged, and it takes the intervention of school nurses in coordination with primary care practitioners to ensure that affected pupils lead a normal school life.(Prader-Willi Syndrome Essay Example)

There are no FDA-approved medications for PWS. Therefore, appropriate diet, parental education, and environmental control are recommended interventions for PWS symptoms. However, several drugs are presently in clinical trials and development, which may increase the scope of therapeutic options for individuals diagnosed with PWS (McCandless et al., 2017; Miller et al., 2015, Richie et al., 2018; Dykens et al., 2018; Allas et al., 2018)(Prader-Willi Syndrome Essay Example). However, there is no existing study evaluating the school nurses’ experiences caring for children with PWS. The existing gap in the literature is the lack of research on school nurses’ experience caring for children diagnosed with PWS, leading to unclear existential aspects of PWS management in clinical settings. Knowledge of the existential aspects of PWS management is crucial to understanding the daily life, resources, and needs of children with PWS and their nurses in school settings and contributing to evidence-based knowledge for clinical practice.(Prader-Willi Syndrome Essay Example)

Hypothesis

School nurses’ experience caring for children with PWS constitutes additional knowledge on the existential aspects of PWS management, including understanding the daily life, resources, and needs of children with PWS and school nurses.(Prader-Willi Syndrome Essay Example)

Literature Review

Children with Prader-Willi syndrome (PWS) present distinctive needs, challenges, and characteristics in educational settings. To achieve an optimal education experience, there is a need for collaboration between teachers, healthcare providers, and parents. This collaboration promotes familiarity with the educational concerns and issues among the affected children. Researchers have explored the effective management of PWS in children. Research by Mackay et al. (2019) determined the requisites for improving the health and well-being of children diagnosed with PWS and their families(Prader-Willi Syndrome Essay Example). The study concluded that food-seeking, repetitive and restrictive behaviors, and communication difficulties among PWS individuals affect their health and their family’s well-being. Significantly, the use of growth hormone as a therapy has contributed to the management of obesity despite the unclear knowledge of the dosage, optimal initiation, and continuation of PWS symptoms such as respiration difficulties and sleep regulation. Mackay and colleagues agree that the evidence of supportive therapies for PWS is poor, and there is a need for the advocacy and development of evidence-based management for affected individuals and their families. For such interventions to be established, a more comprehensive inquiry of relevant factors affecting the quality of life across different geographic and social settings has to be done.(Prader-Willi Syndrome Essay Example)

Thomson et al. (2017) conducted a content analysis investigating the stressors experienced by parents caring for PWS children and identifying relevant coping strategies. The study revealed high-stress levels associated with PWS diagnosis and adequate time for themselves. These stressors include inadequate information on PWS, time constraints, and emotional and physical tiredness. The study revealed that parents of children with PWS tend to learn about their children’s condition, accept their situation, and seek social and instrumental support to cope with the associated problems. The authors argue that no ideal coping strategy is associated with optimal stress management in the literature. However, the study findings emphasize accurate and timely information on PWS diagnosis and joining community and family support groups as a crucial coping mechanism for problems associated with caring for children with PWS.(Prader-Willi Syndrome Essay Example)

Kayadjanian et al. (2018) measured the caregiver burden associated with caring for individuals with PWS, exploring their quality of life. The study revealed that most children its PWS lived at home, and caregivers experienced a higher burden. The burden increased for caregivers caring for children, teenagers, and young adults. Caring for an individual with PWS impacts romantic life and the level of help received, leading to the development of anxiety, negative relationships, depression, and sleep/work disruption. The authors argue that PWS is associated with a high caregiver burden, affecting the caregiver’s life.(Prader-Willi Syndrome Essay Example)

Ragusa et al. (2020) explored the need to integrate parents, adults, and children’s experiences in research related to caring for people living with PWS. The study targeted underage adults diagnosed with PWS and their caregivers. The authors used a narrative analysis of the study outcomes to understand the social and rational issues about PWS diagnosis, present management, daily activities, impact on social life, and an individual’s future. The findings demonstrated that the management of PWS is complex and associated with poor relationships, work-life balance, and social stigma. Therefore, a multi-professional approach is necessary to effectively manage and improve PWS symptoms.(Prader-Willi Syndrome Essay Example)

Rubin et al. (2019) evaluated the efficacy of parent-led home-based physical activity intervention on improved physical activity and gross motor efficiency among obese children with or without PWS. The study revealed that parent-led physical activity did not increase physical activity among children diagnosed with PWS. However, the intervention improved gross motor skills competency among the children diagnosed with PWS. Therefore, training families on physical activity implementation routines contribute to improved motor activity in children with PWS. Dimitropoulos et al. (2017) evaluated the feasibility of a play-based telehealth intervention program for children diagnosed with PWS. The study findings revealed that telehealth is ideal for providing healthcare-related services to children diagnosed with PWS.(Prader-Willi Syndrome Essay Example)

Experimental Design

The author proposes to use a descriptive qualitative research design using semi-structured interviews for this study, as described in Kim et al. (2017) and Lambert et al. (2012). A qualitative design is primarily used to evaluate social processes, understand the meaning, document the experiences, social culture, and individual perceptions, and clarify contexts (Holly, 2013). A simple descriptive study is ideal for this study compared to other methodologies associated with qualitative inquiry, including grounded theory, ethnography, case study, narrative, and participant observation research. The research will attempt to understand school nurses’ experiences dealing with children with PWS from their perspectives through responses given. In this regard, the researcher will understand the school nurses’ perspective on the appropriate management of PWS in children.(Prader-Willi Syndrome Essay Example)

Traditionally, descriptive research summarizes details on a topic under inquiry. In this case, a qualitative descriptive study will allow the researcher to establish inclusive documentation of the school nurses’ experiences caring for children with PWS in school settings. The study design will involve an inductive process in which relevant themes are merged. The research design will seek to answer the research question, “what are the experiences of school nurses caring for children with PWS?” The research design is preferred since the uncomplicated description of the issue of interest is desired.(Prader-Willi Syndrome Essay Example)

Population, sample size, and control group description

The researcher proposes a study pool of 10 (n=10) registered nurses providing care in academic facilities. Ten participants will be ideal in providing a detailed description of experiences associated with caring for children with PWS. Purposive sampling will be used, which justifies the need for a small sample size. Purposive sampling is crucial in qualitative research since participants are often identified with an issue of interest regarding their knowledge and expertise in the research topic. For this study, the participants will be school nurses with experience caring for children diagnosed with PWS. The inclusion criteria include a history of caregiving to a patient(s) diagnosed with PWS aged less than ten years, willingness to share caring experiences and perceptions through writing, and ability to communicate and write English. Exclusion criteria will be nurses with no prior experience caring for children diagnosed with PWS in an academic setting, unregistered nurses, and unwillingness to share caring experiences and perceptions through writing.(Prader-Willi Syndrome Essay Example)

Data Collection

Data collection will be based on information provided in the semi-structured interviews (Appendix I). The semi-structured interviews will be administered through direct interaction with the participants. The research interest is identifying crucial details on school nurses’ experience to contribute to the literature and help establish effective PWS management strategies among school-going children. Semi-structured interviews administered at face value are recommended for qualitative descriptive research in nursing (Kim et al., 2017). Thomson et al. (2017) used a semi-structured interview to evaluate the stressors affecting parents caring for children with PWS and their coping strategies. The researcher will administer semi-structured interviews in this study to collect relevant data on the research topic.

Face-to-face interview administration will allow the researcher to acquire comprehensive information on school nurses’ experiences and perceptions of effective care interventions for children with PWS. The interview will be guided by open-ended questions to allow the participants to express themselves (Appendix I). The beauty of face-to-face value is the ability of the researcher to seek clarification and additional information crucial for the study. Face-to-face information also reduces participant bias. The researcher proposes administering questionnaires for 30 to 60 minutes, depending on the prevailing circumstances. The researcher will obtain verbal and written consent from participants (Appendix II). Although Verbatim is time-consuming, it enhances the accuracy and inherent vigor of the research data (Hill et al., 2022). Verbatim involves the reproduction of interview recording word for word, but it could delay the outcome of research findings.(Prader-Willi Syndrome Essay Example)

Furthermore, the interviews will be recorded for further review and analysis with the participants’ consent. To maintain the ethical principles of nursing research, the researcher will seek ethical approval from the university’s research ethics review committee, maintain confidentiality, and uphold participants’ anonymity by coding identifying information during and after the study. The interviews will be carried out in a secure room, away from external interferences, as determined by the participants. The researcher proposes to carry out the interviews over two weeks, subject to the location and availability of participants. This will allow the researcher to slot enough time for interviews and move from one interview location to the other, depending on the selected participants.(Prader-Willi Syndrome Essay Example)

Methods of Data Analysis

The audio recording will be transcribed and documented verbatim, denoting the participants’ demographic characteristics and experience caring for children with PWS. A thematic analysis will be used to analyze the recordings and interview forms based on Braun & Clarke’s thematic analysis (Appendix III). The author will categorize the recording into themes based on patterns denoted by similar meanings. The thematic analysis offers a flexible analysis of qualitative data to facilitate paradigmatic orientation (Kiger & Varpio, 2020). The researcher will seek to understand the school nurses’ experiences and perceptions through the interview data for this study(Prader-Willi Syndrome Essay Example). The researcher proposers to discuss the recording with the research supervisor for further revelation of themes using deductive and inductive reasoning. The themes will be compared with existing literature findings on caregivers’ experiences with children with PWS, including registered nurses in mainstream hospitals, specialists care centers, and parents. The author will identify new findings and recommendations provided by the participants compared to existing understanding. Bar graphs will be used to illustrate the outcomes of the thematic analysis of the interview results.

Pilot Study

The researcher proposes to contact one participant and administer and analyze the findings. A pilot study is usually conducted at a smaller scale to assess the feasibility of the proposed study. As such, the recommended sample size of a pilot study is usually 10% of the proposed study sample (Lowe, 2019). The pilot study will allow the researcher to identify the proposed study’s required resources and potential limitations and adjust accordingly.(Prader-Willi Syndrome Essay Example)

Ethical Considerations

The researcher will uphold the ethical principles of nursing research throughout the study period. The researcher will seek ethical approval from the university ethics review committee, promote voluntary participation in the study, maintain confidentiality, and provide informed consent (Gelling et al., 2021). The research will inform the participants about the study, including the benefits and risks of participation.(Prader-Willi Syndrome Essay Example)

Proposed Outcomes

            The researcher will report on school nurses’ experiences and perceptions of caring for children diagnosed with PWS in an academic setting. The experiences will highlight the difficulties nurses face while caring for children diagnosed with PWS, the existing guidelines for managing PWS among school-going children, interventions by the institutions to optimize outcomes for these children, and reported bias when caring for children with PWS in academic settings(Prader-Willi Syndrome Essay Example). The Findings will corroborate the existing literature on the complexity therein caring for children diagnosed with PWS. Moreover, the study will report the gaps in existing caring frameworks for children diagnosed with PWS and highlight nurse-report recommendations on appropriate strategies for effective care for children diagnosed with PWS. The experimental design and sampling procedure will allow the researcher to collect a wide range of perceptions, and the direct involvement of the researcher will improve the trustworthiness of the participant-reported information.(Prader-Willi Syndrome Essay Example)

The perceived limitation of the study is the small number of participants which will limit the generalizability of the research findings. The other potential limitation is the logistic challenges of scheduling interviews across different geographic locations with the participants. Moreover, the researcher’s limited experience with Verbatim and coding for thematic analysis will likely impact the study’s robustness. Lastly, there is an inherent risk of participant bias with the qualitative research methodology chosen for the study.(Prader-Willi Syndrome Essay Example)

The researcher has ascertained the quality of the adopted research methodology. According to Korstjens & Moser (2018), the components of a robust study include reflexivity, transferability, and credibility. Methodological quality defines the robustness of a qualitative study, and the measures incorporated in the research methodology and the proposed design suit the study. The researcher proposes to achieve robustness by maintaining credibility and dependability by minimizing researcher bias and basing the research analysis on the participants’ data. The confirmability of the study will be promoted by discussing the Verbatim with the research supervisor. The research hopes to recruit participants from different geographic locations and nursing profiles to promote the transferability of research findings.(Prader-Willi Syndrome Essay Example)

Summary

Various research findings corroborate the disabling nature of PWS in children. The phenotypic manifestations of PWS are broad, and management is complex. Present research findings also indicate that there is no cure for PWS and the existing interventions only aim to manage the symptoms and delay disabling impact(Prader-Willi Syndrome Essay Example). However, there is limited research evaluating the experiences and perceptions of caregivers of individuals diagnosed with PWS. Significantly, there is no study evaluating the experiences and perspectives of school nurses caring for children diagnosed with PWS. Scientists front the need for further research on effectively managing the PWS across all age groups, including children. Considering the impact of PWS on development milestones and cognitive ability, children experience difficulties in achieving academic performance. Therefore, evaluating school nurses’ perceptions and experiences caring for children with PWS will provide insights crucial for developing and establishing effective management guidelines when caring for children with PWS.(Prader-Willi Syndrome Essay Example)

References

Akansel, N., Watson, R., Vatansever, N., & Özdemir, A. (2021). Nurses’ perceptions of caring activities in nursing. Nursing Open, 8(1), 506-516. https://doi.org/10.1002/nop2.653

Allas, S., Caixàs, A., Poitou, C., Coupaye, M., Thuilleaux, D., Lorenzini, F., … & Tauber, M. (2018). AZP-531, an unacylated ghrelin analog, improves food-related behavior in patients with Prader-Willi syndrome: A randomized placebo-controlled trial. PloS One, 13(1), e0190849. https://doi.org/10.1371/journal.pone.0190849

Anglin, K. (2017). Prader-Willi Syndrome 101: An Overview for Pediatric Nurses. Journal of Pediatric Nursing, 36, 263-264. https://doi.org/10.1016/j.pedn.2017.04.007

Angulo, M. A., Butler, M. G., & Cataletto, M. E. (2015). Prader-Willi syndrome: a review of clinical, genetic, and endocrine findings. Journal of Endocrinological Investigation, 38(12), 1249-1263. https://doi.org/10.1007/s40618-015-0312-9

Benchikhi, L., Nafiaa, H., Zaroual, A., & Ouanass, A. (2019). Psychological management of a patient with Prader Willi syndrome: Case study of a young Moroccan girl. The Pan African Medical Journal, 33, 115-115.(Prader-Willi Syndrome Essay Example) https://doi.org/10.11604/pamj.2019.33.115.13726

Bohonowych, J., Miller, J., McCandless, S. E., & Strong, T. V. (2019). The Global Prader–Willi Syndrome Registry: Development, Launch, and Early Demographics. Genes, 10(9), 713. https://doi.org/10.3390%2Fgenes10090713

Dimitropoulos, A., Zyga, O., & Russ, S. (2017). Evaluating the feasibility of a play-based telehealth intervention program for children with Prader–Willi syndrome. Journal of Autism and Developmental Disorders, 47(9), 2814-2825. https://doi.org/10.1007/s10803-017-3196-z

Duis, J., van Wattum, P. J., Scheimann, A., Salehi, P., Brokamp, E., Fairbrother, L., … & Miller, J. L. (2019). A multidisciplinary approach to the clinical management of Prader–Willi syndrome. Molecular Genetics & Genomic Medicine, 7(3), e514. https://doi.org/10.1002%2Fmgg3.514

Dykens, E. M., Miller, J., Angulo, M., Roof, E., Reidy, M., Hatoum, H. T., … & Korner, P. (2018). Intranasal carbetocin reduces hyperphagia in individuals with Prader-Willi syndrome. JCI insight, 3(12). https://doi.org/10.1172/jci.insight.98333

Holly, C. ed. (2013). Scholarly inquiry and the DNP capstone. Springer Publishing Company.(Prader-Willi Syndrome Essay Example)

Kayadjanian, N., Schwartz, L., Farrar, E., Comtois, K. A., & Strong, T. V. (2018). High levels of caregiver burden in Prader-Willi syndrome. PLoS One, 13(3), e0194655. https://doi.org/10.1371/journal.pone.0194655

Kiger, M.E. & Varpio, L. (2020). Thematic analysis of qualitative data: AMEE Guide No. 131. Medical Teacher, 42(8), pp.846-854.

Kim, H., Sefcik, J. S., & Bradway, C. (2017). Characteristics of qualitative descriptive studies: A systematic review. Research in Nursing & Health, 40(1), 23-42. https://doi.org/10.1002/nur.21768

Lambert, V. A., & Lambert, C. E. (2012). Qualitative descriptive research: An acceptable design. Pacific Rim International Journal of Nursing Research, 16(4), 255-256. https://he02.tci-thaijo.org/index.php/PRIJNR/article/download/5805/5064

Mackay, J., McCallum, Z., Ambler, G. R., Vora, K., Nixon, G., Bergman, P., … & Downs, J. (2019). Requirements for improving health and well-being of children with Prader‐Willi syndrome and their families. Journal of Paediatrics and Child Health, 55(9), 1029-1037. https://doi.org/10.1111%2Fjpc.14546

McCandless, S. E., Yanovski, J. A., Miller, J., Fu, C., Bird, L. M., Salehi, P., … & Butler, M. G. (2017). Effects of MetAP2 inhibition on hyperphagia and body weight in Prader–Willi syndrome: A randomized, double‐blind, placebo‐controlled trial. Diabetes, Obesity and Metabolism, 19(12), 1751-1761. https://doi.org/10.1111%2Fdom.13021

Miller, J. L., Strong, T. V., & Heinemann, J. (2015). Medication trials for hyperphagia and food-related behaviors in Prader–Willi syndrome. Diseases, 3(2), 78-85. https://doi.org/10.3390%2Fdiseases3020078

Ragusa, L., Crinò, A., Grugni, G., Reale, L., Fiorencis, A., Licenziati, M. R., … & Marini, M. G. (2020). Caring and living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through multicentre narrative medicine research. BMJ Open, 10(8), e036502. https://doi.org/10.1136%2Fbmjopen-2019-036502

Rice, L. J., Einfeld, S. L., Hu, N., & Carter, C. S. (2018). A review of clinical trials of oxytocin in Prader–Willi syndrome. Current Opinion in Psychiatry, 31(2), 123-127. https://doi.org/10.1097/yco.0000000000000391

Rubin, D. A., Wilson, K. S., Dumont-Driscoll, M., & Rose, D. J. (2019). Effectiveness of a Parent-led Physical Activity Intervention in Youth with Obesity. Medicine and Science in Sports and Exercise, 51(4), 805-813.(Prader-Willi Syndrome Essay Example) https://doi.org/10.1249/mss.0000000000001835

Schwartz, L., Holland, A., Dykens, E., Strong, T., Roof, E., & Bohonowych, J. (2016).  Prader-Willi syndrome mental health research strategy workshop proceedings: the state of the science and future directions. Orphanet J Rare Dis 11, 131 (2016). https://doi.org/10.1186/s13023-016-0504-1

Thomson, A., Glasson, E., Roberts, P., & Bittles, A. (2017). “Over time it just becomes easier…”: parents of people with Angelman syndrome and Prader–Willi syndrome speak about their carer role. Disability and Rehabilitation, 39(8), 763-770. https://doi.org/10.3109/09638288.2016.1161838

Hill, Z., Tawiah-Agyemang, C., Kirkwood, B., & Kendall, C. (2022). Are verbatim transcripts necessary in applied qualitative research: experiences from two community-based intervention trials in Ghana. Emerging Themes in Epidemiology, 19(1), 1-8. https://doi.org/10.1186/s12982-022-00115-w

Korstjens, I. & Moser, A., (2018). Series: Practical guidance to qualitative research. Part 4: Trustworthiness and publishing. European Journal of General Practice, 24(1), pp.120-124. https://doi.org/10.1080/13814788.2017.1375092

APPENDIX I: Interview Guide

1. How long have you cared for children with PWS?

Probes: How would you describe your experience caring for children with PWS?

2. While interacting with children diagnosed with PWS, do you have any preconceptions and expectations on treatment outcomes?

Probes: What are the common outcome measures?

3. Do you believe children diagnosed with PWS have a chance to succeed in academic life:

Probes: How would you describe their cognitive ability?

4. If you recall, what is the number of children diagnosed with PWS you have cared for in the last year?

Probes: What prompted your interactions with these children?

5. If any, how has caring for the children with PWS affected you?

Probes: Do you believe you have the necessary skills to care for children with PWS?

6. If any, what skills gap might you or any other nurses have when caring for children with PWS?

Probes: What training recommendations do you have?

7. Have you collaborated with the PCP to promote effective care for children with PWS?

Probes: Pease describes the nature of this collaboration.

8. What mechanisms have the institution placed to support care for children with PWS?

Probes: Which of the mechanisms have been effective for you and why?

9. What other interventions do you propose to care for children with PWS in academic settings effectively?

Probes: What are your reasons for proposing these interventions?

Source: The researcher developed the interview guide for this study.

APPENDIX I: Consent Form

Title of the Study: A qualitative study investigating school nurses’ experience caring for children with Prader-Willi syndrome.

I ………………., voluntarily confirm that I have agreed to participate in the above-mentioned study.

I understand that participation in the study is voluntary, and I can refuse to participate in the interview or refuse to answer any questions without any consequences.

I understand that I can withdraw consent to use my interview data for the study within two weeks after the interview date, in which my interview data will be deleted.

In confirm that the nature and the purpose of the study have been explained to me in writing, I had the opportunity to ask for clarifications, and the researcher answered all the questions to my satisfaction.

I understand that participation involves explaining my experience and perceptions of caring for children diagnosed with PWS.

I understand that I have no direct benefit from the study

I hereby consent to participate in this research study, in which the interview session will be recorded and treated confidentially.

I understand my details in the study will remain anonymous, the extracts for the interview will be quoted in my code name, the researcher will retain the audio recording, and I am entitled to access the information I provided when needed.

Participants Signature: ______________________

Date: __________

Researchers Signature: ______________________

Date: __________

APPENDIX VI: Thematic Analysis Framework

APPENDIX VII: Resources and Expenses