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Parents' perceptions of their children participating in paediatric palliative treatment and care / Penelope MatheMathe, Penelope January 2014 (has links)
Children’s participation is embodied in Article 12 of the United Nations Convention on the Rights of the Child (UNCRC, 2009). Children’s participation is about the right of children who are capable of expressing their views to express them freely in all matters affecting them. In the context of paediatric palliative care children’s participation is also about access to information regarding children’s illnesses, treatment and care. Methods of communication, such as open communication and honesty are the main requirements in order for participation to be genuine. As a means to advance knowledge, this study explores parents’ perceptions of their children participation in the context of paediatric palliative care. The study aims to formulate guidelines, which can be applied to promote children’s participation in their treatment and care in the context of paediatric palliative care. The interpretive descriptive research design was used as the methodology that offers the perspective for analysing situations and enabling practical applicability. Data for this study was gathered by means of semi-structured interviews, a vignette and incomplete sentences. Participants were sampled through a purposive sampling to ensure that the participants are the holders of the needed data. The collected data was transcribed and analysed and the thematic analysis process was incorporated.
The findings of this study indicate the parents’ stance towards children’s participation in the paediatric palliative care context. Participants’ perceptions indicate the fears they have with regard to children’s autonomy. Participants’ perceptions are in contrary to the literature on children’s participation and the legislation on children’s rights as their view is that children should not be involved in decision making processes regarding the children’s treatment and care. Participants made reference to their concerns related to the right of their children to participate in decision making regarding their treatment and care. Reference was also made to the societal norms and culture that is part of their existence.
Findings suggest that the need exists for developing support systems which will assist the parents in facilitating their children’s participation regarding their treatment and care in the context of paediatric palliative care.
Based on the findings of this study recommendation are made to health care systems, that is, the governmental bodies that are involved and responsible for the implementation of policies in health care, hospitals and hospices to focus on developing individualised support structures for parents with children who have life-limiting illnesses as the disease profiles vary and the societal response differs towards these diseases. The support structures should be based on the parents’ understanding of their circumstances and experiences regarding their children’s participation in the paediatric palliative treatment and care. / MSW, North-West University, Potchefstroom Campus, 2014
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Parents' perceptions of their children participating in paediatric palliative treatment and care / Penelope MatheMathe, Penelope January 2014 (has links)
Children’s participation is embodied in Article 12 of the United Nations Convention on the Rights of the Child (UNCRC, 2009). Children’s participation is about the right of children who are capable of expressing their views to express them freely in all matters affecting them. In the context of paediatric palliative care children’s participation is also about access to information regarding children’s illnesses, treatment and care. Methods of communication, such as open communication and honesty are the main requirements in order for participation to be genuine. As a means to advance knowledge, this study explores parents’ perceptions of their children participation in the context of paediatric palliative care. The study aims to formulate guidelines, which can be applied to promote children’s participation in their treatment and care in the context of paediatric palliative care. The interpretive descriptive research design was used as the methodology that offers the perspective for analysing situations and enabling practical applicability. Data for this study was gathered by means of semi-structured interviews, a vignette and incomplete sentences. Participants were sampled through a purposive sampling to ensure that the participants are the holders of the needed data. The collected data was transcribed and analysed and the thematic analysis process was incorporated.
The findings of this study indicate the parents’ stance towards children’s participation in the paediatric palliative care context. Participants’ perceptions indicate the fears they have with regard to children’s autonomy. Participants’ perceptions are in contrary to the literature on children’s participation and the legislation on children’s rights as their view is that children should not be involved in decision making processes regarding the children’s treatment and care. Participants made reference to their concerns related to the right of their children to participate in decision making regarding their treatment and care. Reference was also made to the societal norms and culture that is part of their existence.
Findings suggest that the need exists for developing support systems which will assist the parents in facilitating their children’s participation regarding their treatment and care in the context of paediatric palliative care.
Based on the findings of this study recommendation are made to health care systems, that is, the governmental bodies that are involved and responsible for the implementation of policies in health care, hospitals and hospices to focus on developing individualised support structures for parents with children who have life-limiting illnesses as the disease profiles vary and the societal response differs towards these diseases. The support structures should be based on the parents’ understanding of their circumstances and experiences regarding their children’s participation in the paediatric palliative treatment and care. / MSW, North-West University, Potchefstroom Campus, 2014
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The treatment of paediatric asthma in the private health care sector of South Africa : a retrospective drug utilisation review / J. MoutonMouton, Jeanine January 2010 (has links)
Asthma is the most common chronic disease among children worldwide. The prescribing
patterns of the medication used to treat asthma in South Africa, as well as the prevalence of
paediatric asthma are of interest and need to be investigated.
A drug utilisation review was performed to determine the prevalence of asthma, and in
particular paediatric asthma in a section of the private health care sector of South Africa. The
prescribing patterns of asthma medication were investigated according to different
demographic factors, such as gender, geographical area and prescriber type. Data from a
medical claims database were extracted and processed to reveal the different prescribing
patterns from 1 January 2005 to 31 December 2008. Medication from the MIMS®
pharmacological groups 10.2 and 10.4 were used as a basis for asthma medication. Patients
had to use at least one medicine item from one of these groups to be included in the study.
The prevalence of asthma in the general population showed an increase from 2005 to 2008.
The prevalence of asthma as a part of the total database according to the number of patients
increased from 23.01% in 2005 (n=347342) to 24.72% in 2008 (n=240854), although the
number of patients on the total database decreased from 2005 to 2008. When investigating
the number of prescriptions that were dispensed during 2008, asthma prescriptions
comprised 7.16% (n=484983) of all prescriptions and the number of asthma medicine items
that were dispensed made up 3.72% (n=611139) of the total number of medicine items
dispensed in 2008.
Paediatric asthma was divided into two age groups for the purpose of this study namely, 0 -
4 years of age and older than 4 years, but younger or equal to 11 years of age ( >4 - 11
years), according to a previous study done by the National Heart Lung and Blood Institute
(NHLBI). The results from the data confirmed that the prevalence of asthma was higher in
the younger age group. The number of patients using asthma medication in the 0 - 4 years
age group comprised 44.40% (n=11306) of the total number of patients in this age group on
the database in 2008, compared to 32.84% (n=28347) in the >4 - 11 years age group.
Asthma was more common among male patients, whether they were included in the
paediatric groups or not. The geographical distribution of paediatric asthma seemed to be
connected to the provinces without coastlines and different mining facilities. The combination of asthma medication with antibiotics and systemic corticosteroids were investigated and it
was concluded that antibiotics that were used for respiratory tract infections were prescribed
the most frequently to asthma patients.
The refill–adherence rates of patients with asthma were not satisfactory when considering
that asthma is a chronic disease. The average adherence rate for all the asthma products
that were brought into account when calculating the refill–adherence rate was 60.95%. A rate
above 90% indicates optimal patient adherence.
In conclusion this study determined that asthma has a significant prevalence among children
in South Africa. The prescribing patterns for the different medication used in the treatment of
asthma were investigated and recommendations for further research in this field of study
were made. / Thesis (M.Pharm. (Pharmacy Practice))--North-West University, Potchefstroom Campus, 2011.
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The treatment of paediatric asthma in the private health care sector of South Africa : a retrospective drug utilisation review / J. MoutonMouton, Jeanine January 2010 (has links)
Asthma is the most common chronic disease among children worldwide. The prescribing
patterns of the medication used to treat asthma in South Africa, as well as the prevalence of
paediatric asthma are of interest and need to be investigated.
A drug utilisation review was performed to determine the prevalence of asthma, and in
particular paediatric asthma in a section of the private health care sector of South Africa. The
prescribing patterns of asthma medication were investigated according to different
demographic factors, such as gender, geographical area and prescriber type. Data from a
medical claims database were extracted and processed to reveal the different prescribing
patterns from 1 January 2005 to 31 December 2008. Medication from the MIMS®
pharmacological groups 10.2 and 10.4 were used as a basis for asthma medication. Patients
had to use at least one medicine item from one of these groups to be included in the study.
The prevalence of asthma in the general population showed an increase from 2005 to 2008.
The prevalence of asthma as a part of the total database according to the number of patients
increased from 23.01% in 2005 (n=347342) to 24.72% in 2008 (n=240854), although the
number of patients on the total database decreased from 2005 to 2008. When investigating
the number of prescriptions that were dispensed during 2008, asthma prescriptions
comprised 7.16% (n=484983) of all prescriptions and the number of asthma medicine items
that were dispensed made up 3.72% (n=611139) of the total number of medicine items
dispensed in 2008.
Paediatric asthma was divided into two age groups for the purpose of this study namely, 0 -
4 years of age and older than 4 years, but younger or equal to 11 years of age ( >4 - 11
years), according to a previous study done by the National Heart Lung and Blood Institute
(NHLBI). The results from the data confirmed that the prevalence of asthma was higher in
the younger age group. The number of patients using asthma medication in the 0 - 4 years
age group comprised 44.40% (n=11306) of the total number of patients in this age group on
the database in 2008, compared to 32.84% (n=28347) in the >4 - 11 years age group.
Asthma was more common among male patients, whether they were included in the
paediatric groups or not. The geographical distribution of paediatric asthma seemed to be
connected to the provinces without coastlines and different mining facilities. The combination of asthma medication with antibiotics and systemic corticosteroids were investigated and it
was concluded that antibiotics that were used for respiratory tract infections were prescribed
the most frequently to asthma patients.
The refill–adherence rates of patients with asthma were not satisfactory when considering
that asthma is a chronic disease. The average adherence rate for all the asthma products
that were brought into account when calculating the refill–adherence rate was 60.95%. A rate
above 90% indicates optimal patient adherence.
In conclusion this study determined that asthma has a significant prevalence among children
in South Africa. The prescribing patterns for the different medication used in the treatment of
asthma were investigated and recommendations for further research in this field of study
were made. / Thesis (M.Pharm. (Pharmacy Practice))--North-West University, Potchefstroom Campus, 2011.
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Riglyne vir pleegouers by die bekendmaking van pediatriese MIVDavin, Reda J. (Reda Johanna) 05 October 2011 (has links)
Afrikaans text / Die studie ondersoek die leemte aan teoreties gefundeerde riglyne om pleegouers in die bekendmakingsproses van hulle kind se MIV-positiewe status te ondersteun Die studie geskied binne die teoretiese raamwerk van ʼn intervensienavorsingsmodel. In die empiriese navorsing is die vrese en probleme van pleegouers by die bekendmakingsproses ondersoek. Daar is bevind dat hierdie vrese en probleme in ag geneem moet word in die beoogde riglyne. Die kognitiewe ontwikkeling van die kind is deur middel van ʼn literatuurstudie ondersoek om vas te stel watter kennis, denke en inligting die kind op verskillende ouderdomme begryp. Daar is bevind dat kinders wat MIV-positief is, moontlike agterstande ondervind en dat die riglyne gevolglik gebaseer moet word op die toenemende ontwikkeling van die kind, met begrip vir individuele ontwikkelingsverskille. Voorts is bevind dat pleegouers se eie gereedheid ʼn belangrike rol speel. Alhoewel die pleegouer die bekendmakingsproses self moet aanvoer en hanteer is dit belangrik dat die pleegouers deur ʼn interdissiplinêre span ondersteun en begelei sal word. / This study investigates the absence of theoretical grounded guidelines to support foster parents when disclosing paediatric HIV. The study was done within the theoretical framework of an intervention research model. The empirical research investigated the fears and problems experienced by foster parents during the disclosure process. It was found that these fears and problems should be taken into account when compiling guidelines. The child‟s cognitive development was researched by way of a literary study in order to determine what knowledge, thoughts and information the child is able to grasp at different ages. It was found that children who are HIV positive could possibly lag behind and that the guidelines should therefore be based on the accumulative development of the child, with consideration given to individual developmental differences. Furthermore, it was established that foster parents‟ own readiness plays an important role. For this reason the foster parents should be supported and guided by an interdisciplinary team, but that they themselves should take care and execute the process of disclosure. / Social Work / M. Diac. (Spelterapie)
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Riglyne vir pleegouers by die bekendmaking van pediatriese MIVDavin, Reda J. (Reda Johanna) 05 October 2011 (has links)
Afrikaans text / Die studie ondersoek die leemte aan teoreties gefundeerde riglyne om pleegouers in die bekendmakingsproses van hulle kind se MIV-positiewe status te ondersteun Die studie geskied binne die teoretiese raamwerk van ʼn intervensienavorsingsmodel. In die empiriese navorsing is die vrese en probleme van pleegouers by die bekendmakingsproses ondersoek. Daar is bevind dat hierdie vrese en probleme in ag geneem moet word in die beoogde riglyne. Die kognitiewe ontwikkeling van die kind is deur middel van ʼn literatuurstudie ondersoek om vas te stel watter kennis, denke en inligting die kind op verskillende ouderdomme begryp. Daar is bevind dat kinders wat MIV-positief is, moontlike agterstande ondervind en dat die riglyne gevolglik gebaseer moet word op die toenemende ontwikkeling van die kind, met begrip vir individuele ontwikkelingsverskille. Voorts is bevind dat pleegouers se eie gereedheid ʼn belangrike rol speel. Alhoewel die pleegouer die bekendmakingsproses self moet aanvoer en hanteer is dit belangrik dat die pleegouers deur ʼn interdissiplinêre span ondersteun en begelei sal word. / This study investigates the absence of theoretical grounded guidelines to support foster parents when disclosing paediatric HIV. The study was done within the theoretical framework of an intervention research model. The empirical research investigated the fears and problems experienced by foster parents during the disclosure process. It was found that these fears and problems should be taken into account when compiling guidelines. The child‟s cognitive development was researched by way of a literary study in order to determine what knowledge, thoughts and information the child is able to grasp at different ages. It was found that children who are HIV positive could possibly lag behind and that the guidelines should therefore be based on the accumulative development of the child, with consideration given to individual developmental differences. Furthermore, it was established that foster parents‟ own readiness plays an important role. For this reason the foster parents should be supported and guided by an interdisciplinary team, but that they themselves should take care and execute the process of disclosure. / Social Work / M. Diac. (Spelterapie)
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Monitoring longitudinal behaviour of impedance and Neural Response Telemetry measurements in a group of young cochlear implant usersCass, Nicolize 06 July 2011 (has links)
Electrophysiological measures such as impedance telemetry and Neural Response Telemetry (NRT™) were developed by Cochlear™ in 1992 as clinical tools allowing the objective setting of stimulus levels for cochlear implant users. Extensive research proved the usefulness of NRT™’s as an aid in the programming process of audible and comfortable stimulus levels for children younger than six years. The Nucleus® Freedom™, launched in 2005, introduced new developments in cochlear implantation. Approval from the FDA for this system was obtained in March 2005 and for the first time included children from age 12 months with profound hearing loss. The Joint Committee on Infant Hearing suggested that children be diagnosed and that treatment commenced by the age of six months. The new features of the Nucleus Freedom™ give clinicians the necessary tools to treat this challenging population. An urgent need exists to ascertain the stability and accuracy of the new features introduced by this system, especially the Auto-NRT™ software, to validate its use within the paediatric population. A longitudinal descriptive design was utilized implementing quantitative research methods to critically describe the behaviour of impedance telemetry and NRT™’s in a group of young cochlear implant users. The quantitative method included the application of the Custom Sound™ software and the Auto-NRT™ feature for this group at implantation, device activation, and then at determined follow-up visits. Nine young children between nine months and five years and eleven months were used as participants during the twelve months of research. Impedance telemetry was described in terms of the mean Common Ground (CG) and Monopolar 1+2 (MP1+2) values calculated from measurement data collected on the basal, medial, and apical electrodes of the electrode array. The electrodes identified for statistical procedures for both measurement types were E3, E6, E8, E11, E13, E16, E19 and E21. Friedman’s ANOVA was used as a statistical measure to determine the level of significance in changes among the measurement modes and conditions. The Wilcoxon signed-rank test was indicated in the presence of significant changes identified by Friedman’s ANOVA to calculate the level of significance in a pair-wise comparison. Results indicate that impedance telemetry remained consistent over the electrode array and over time in both measurement modes. A slight increase in mean values was observed during the first three months, followed by a gradual decrease at the six months interval. These changes were statistically nonsignificant. No specific trends were evident in impedance telemetry over time. NRT™-measurements remained consistent across the electrode array over time. Significant changes were present between the intra-operative to device activation measurement intervals. This trend is also described in studies of adult cochlear implant users. NRT™-measurements were stable during the first year postimplantation within the paediatric population. A comparison between the mean impedance telemetry and NRT™’s disclosed an inverse trend during the first six months post-implantation. Most changes were non-significant, indicating that these measures can be used effectively in the new semi-automated fitting software. The implementation of these measurements can lead to streamlined and accountable service delivery to young cochlear implant users. AFRIKAANS : In 1992 is elektrofisiologiese metings soos impedanstelemetrie en Neurale Respons Telemetrie (NRT™) deur Cochlear™ ontwikkel as kliniese hulpmiddels om objektiewe instelling van stimulasievlakke vir kogleêre gebruikers moontlik te maak. Navorsing het bewys dat NRT™’s ‘n effektiewe hulpmiddel is tydens programmering van hoorbare en gemaklike stimulasievlakke by kinders jonger as ses jaar. Die Nucleus® Freedom™ met nuwe ontwikkelings ten opsigte van kogleêre inplantings is in 2005 bekendgestel. Die FDA het in Maart 2005 hierdie sisteem goedgekeur vir gebruik by kinders selfs so jonk as 12 maande met uitermatige gehoorverlies. Die Joint Committee on Infant Hearing het voorgestel dat diagnose en aanvang van rehabilitasie teen ses maande ouderdom moet plaasvind. Die nuwe funksies van die Nucleus® Freedom™ stel oudioloë in staat om hierdie uitdagende bevolking te hanteer. ‘n Dringende behoefte bestaan om te bepaal of hierdie sagteware, veral Auto-NRT™ wat saam met hierdie sisteem bekendgestel is, oor voldoende akkuraatheid en stabiliteit beskik om in die hantering van die pediatriese bevolking te gebruik. ‘n Longitudinale, beskrywende ontwerp, wat kwantitatiewe metodes implementeer, is aangewend om die beweging van impedanstelemetrie en NRT™’s by ‘n groep jong gebruikers van kogleêre inplantings krities te beskryf. Dit het die gebruik van die Custom Sound™ sagteware en die ingeslote Auto- NRT™ funksie behels. Dit is tydens inplantering, by aktivering van die toestel, en bepaalde opvolgsessies uitgevoer. Nege jong kinders tussen die ouderdomme van nege maande en vyf jaar en 11 maande is tydens die 12 maande navorsingsperiode as proefpersone benut. Die impedansmetings is beskryf in terme van die Common Ground (CG) en Monopolar 1+2 (MP1+2) stimulasiemodaliteite. Data is verkry vanaf geselekteerde elektrodes op die basale, mediale en apikale gedeeltes van die elektrode. Vir statistiese ontledings van impedans en NRT™ is hierdie elektrodes geselekteer: E3, E6, E8, E11, E13 E16, E19 en E21. As statistiese ontledingsmetode, is Friedman se ANOVA toegepas om die vlakke van beduidenheid van beweging tussen die verskillende toetsmodaliteite en -omstandighede te bepaal. Die Wilcoxon signed-rank toets is aangedui in die teenwoordigheid van statisties beduidende veranderinge. Die doel van hierdie toets was om die vlak van beduidenheid paarsgewys te verifieer. Resultate dui op konstante impedansmetings oor die elektrode asook oor tyd in beide toetsmodaliteite. ‘n Geringe, statisties nie-beduidende, verhoging in gemiddelde waardes is waargeneem tydens die eerste drie maande na inplantering, waarna die waardes weer geleidelik afgeneem het tot en met die ses maande opvolginterval. Geen spesifieke neiging kon vir impedanstelemetrie bepaal word nie. NRT™-metings het konstant gebly oor die elektrode en met tyd. Statisties beduidende veranderinge is gemeet tussen die intra-operatiewe en aktiveringsintervalle. Hierdie neiging is ook beskryf in studies van volwasse gebruikers van kogleêre inplantings. NRT™-metings, binne die pediatriese populasie, het dus stabiel gebly oor die 12 maande periode post-inplantering. ‘n Vergelyking tussen die gemiddelde impedans- en NRT™-metings het ‘n inverse neiging geïdentifiseer gedurende die eerste ses maande na inplantering. Veranderinge was oor die algemeen statisties nie-beduidend, wat daarop dui dat hierdie metings effektief gebruik kan word. Die implementering van hierdie metings kan meer doeltreffende dienslewering aan die jong gebruikers van kogleêre inplantings tot gevolg hê. / Dissertation (MCommunication Pathology)--University of Pretoria, 2010. / Speech-Language Pathology and Audiology / unrestricted
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