Primary Caregivers' Knowledge, Attitudes and Beliefs toward Palliative Care for Children with Cancer

الموضوعات

طب

الملخص

Parents’ knowledge, attitudes and beliefs (KAB) toward Pediatric Palliative Care (PPC)in children with cancer remain underexplored, especially in Low and Middle IncomeCountries (LMICs) where the care relies heavily on family involvement. This two-phasemulticenter study examined primary caregivers’ KAB toward PPC for children withcancer in order to uncover areas for improvement. The first and second phases share acommon specific aim to culturally validate instruments measuring the concepts ofinterest. The specific aims of the second phase included describing the current primarycaregivers’ KAB toward PPC for children with cancer, determining the factorsassociated with primary caregivers’ KAB and identifying the primary caregivers’ tasksin PPC for children with cancer.In the first study phase, cultural adaptation, content validation and pilot testing of thequestionnaire were conducted. The items were newly developed or taken frompreviously validated tools such as the Memorial Symptom Assessment Scale and thePalliative Care Knowledge Scale. After two independent forward translations and oneback-translation, ten experts in pediatric oncology and palliative care evaluated thequestionnaire for content validity and cultural appropriateness. The questionnaire wasthen piloted through structured interviews via WhatsApp with twenty primary caregiversof children with cancer. The main study used a quantitative cross-sectional descriptivedesign. A sample of 105 participants from three major pediatric oncology centers inLebanon completed the study. Data were collected through structured interviews viaWhatsApp using the questionnaire validated in the pilot phase.The experts’ reviews revealed excellent Content Validity Index (CVI) for the items(CVI=0.8-1) and the overall survey (CVI=0.99). The sample in the pilot study evaluatedthe survey’s ease, length, clarity, wording and language. Preliminary data was obtained.In the main study, the psychometric analysis of different survey sections yieldedsatisfactory results for the PPC attitudes scale (Exploratory Factor Analysis revealed athree-factor structure with satisfactory Cronbach’s alpha coefficient). Results of themain study results suggested that, few primary caregivers have heard about PPC (n=18,17.1%) and only 2% had accurate information about it. When given a brief descriptionof PPC, more than 90% demonstrated positive attitudes (Mean attitude above 4) towardthe care and recommended its integration at the start of cancer treatment. “Religious andspiritual commitment” was the most common strong facilitator and “Overwhelmingnegative emotions” was the most common strong barrier to integrating PPC at theindividual level. Participants, on average, engaged in 22.1 activities within PPC, evenwithout recognizing the medical term. The bivariate and regression analysis suggestedsignificant associations of knowledge, attitudes and beliefs with several demographicand clinical factors.Examining parents’ KAB toward PPC in LMICs, such as Lebanon, enhancesknowledge and potentially informs practice in these regions. This study promoted PPCunderstanding, highlighted factors influencing KAB toward PPC, and providedevidence on psychometric properties of novel instruments used among parents ofchildren with cancer.

روابط وملفات

التعريف والنوع

رقم الوثيقة

0a03c690-f115-482b-ae6f-c3f005e3eed1

رقم العقد

0

نوع الوسائط

Crawler

نوع المحتوى

الرسائل العلمية

صيغة المصدر

رسائل دكتوراة

نوع الملف

pdf text

أسماء الملفات

2206231_1.pdf

بيانات النشر

ألقاب المؤلفين

[{"name_ar":" Huda Abu-Saad Huijer ","title_ar":"اشراف","title_en":"Supervision"},{"name_ar":"Rima Maroun Saad","title_ar":"اعداد","title_en":"Preparation"}]

اللغة

English

المصدر والدورية

اسم المصدر

Primary Caregivers' Knowledge, Attitudes and Beliefs toward Palliative Care for Children with Cancer

المحتوى والصفحات

عدد الصفحات

0

كلمات الباحثين

Show simple item record dc.contributor.advisor Abu-Saad Huijer, Huda dc.contributor.advisor Noureddine, Samar dc.contributor.author Saad, Rima dc.date.accessioned 2022-03-30T06:11:59Z dc.date.available 2022-03-30T06:11:59Z dc.date.issued 2022-03-30 dc.date.submitted 2022-03-30 dc.identifier.uri http://hdl.handle.net/10938/23361 dc.description.abstract Parents’ knowledge, attitudes and beliefs (KAB) toward Pediatric Palliative Care (PPC)in children with cancer remain underexplored, especially in Low and Middle IncomeCountries (LMICs) where the care relies heavily on family involvement. This two-phasemulticenter study examined primary caregivers’ KAB toward PPC for children withcancer in order to uncover areas for improvement. The first and second phases share acommon specific aim to culturally validate instruments measuring the concepts ofinterest. The specific aims of the second phase included describing the current primarycaregivers’ KAB toward PPC for children with cancer, determining the factorsassociated with primary caregivers’ KAB and identifying the primary caregivers’ tasksin PPC for children with cancer.In the first study phase, cultural adaptation, content validation and pilot testing of thequestionnaire were conducted. The items were newly developed or taken frompreviously validated tools such as the Memorial Symptom Assessment Scale and thePalliative Care Knowledge Scale. After two independent forward translations and oneback-translation, ten experts in pediatric oncology and palliative care evaluated thequestionnaire for content validity and cultural appropriateness. The questionnaire wasthen piloted through structured interviews via WhatsApp with twenty primary caregiversof children with cancer. The main study used a quantitative cross-sectional descriptivedesign. A sample of 105 participants from three major pediatric oncology centers inLebanon completed the study. Data were collected through structured interviews viaWhatsApp using the questionnaire validated in the pilot phase.The experts’ reviews revealed excellent Content Validity Index (CVI) for the items(CVI=0.8-1) and the overall survey (CVI=0.99). The sample in the pilot study evaluatedthe survey’s ease, length, clarity, wording and language. Preliminary data was obtained.In the main study, the psychometric analysis of different survey sections yieldedsatisfactory results for the PPC attitudes scale (Exploratory Factor Analysis revealed athree-factor structure with satisfactory Cronbach’s alpha coefficient). Results of themain study results suggested that, few primary caregivers have heard about PPC (n=18,17.1%) and only 2% had accurate information about it. When given a brief descriptionof PPC, more than 90% demonstrated positive attitudes (Mean attitude above 4) towardthe care and recommended its integration at the start of cancer treatment. “Religious andspiritual commitment” was the most common strong facilitator and “Overwhelmingnegative emotions” was the most common strong barrier to integrating PPC at theindividual level. Participants, on average, engaged in 22.1 activities within PPC, evenwithout recognizing the medical term. The bivariate and regression analysis suggestedsignificant associations of knowledge, attitudes and beliefs with several demographicand clinical factors.Examining parents’ KAB toward PPC in LMICs, such as Lebanon, enhancesknowledge and potentially informs practice in these regions. This study promoted PPCunderstanding, highlighted factors influencing KAB toward PPC, and providedevidence on psychometric properties of novel instruments used among parents ofchildren with cancer. dc.language.iso en_US dc.subject Palliative Care, Pediatric, Knowledge, Attitudes, Cancer

إشراف وإعداد

الإشراف

Huda Abu-Saad Huijer

الإعداد

Rima Maroun Saad

الاقتباسات الببليوغرافية