scholarly journals “Living an Obstacle Course”: A Qualitative Study Examining the Experiences of Caregivers of Children with Rett Syndrome

2018 ◽  
Vol 16 (1) ◽  
pp. 41 ◽  
Author(s):  
Domingo Palacios-Ceña ◽  
Pilar Famoso-Pérez ◽  
Jaime Salom-Moreno ◽  
Pilar Carrasco-Garrido ◽  
Jorge Pérez-Corrales ◽  
...  
Keyword(s):  
Rett Syndrome ◽  
Economic Resources ◽  
Care Process ◽  
Everyday Activities ◽  
The Family ◽  
Considerable Impact ◽  
Field Notes ◽  
Depth Interviews

Background: Rett syndrome has considerable effects on the quality of life of affected children, impairing everyday activities and potentially impacting the life of both the caregivers and the family. Our aim was to explore the experiences of a group of caregivers of children with Rett syndrome with regards to living and caring for their children. Methods: We conducted a qualitative case study to examine how 31 caregivers of children with Rett syndrome perceived living with their children. Data were collected through in-depth interviews, focus groups, researchers’ field notes and caregivers’ personal documents. A thematic analysis was performed following the Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline. Results: The experience of being a caregiver of a child with Rett syndrome was expressed as being akin to an “obstacle course”, and was described via three main themes: (a) looking for answers, with two subthemes identified, namely ‘the first symptoms’, and ‘the need for a diagnosis’; (b) managing day to day life, with the subthemes ‘applying treatments’, and ‘learning to care’; and (c) money matters. Conclusions: Rett syndrome has a considerable impact on the lives of the caregivers involved. The health-care process and the management of economic resources are some of the aspects highlighted by caregivers. These findings have important implications for the planning of support services, health systems and health policies.

scholarly journals The quality of life in girls with Rett syndrome

2016 ◽  
Vol 8 (1) ◽  
pp. 5-9 ◽  
Author(s):  
Lucia Parisi ◽  
Teresa Di Filippo ◽  
Michele Roccella
Keyword(s):  
Quality Of Life ◽  
Rett Syndrome ◽  
Research Quality ◽  
Entire Family ◽  
Severe Intellectual Disability ◽  
The Family ◽  
Common Causes ◽  
The Central Nervous System ◽  
Considerable Impact

Nowadays, quality of life is receiving an increasing attention in all scientific areas. Rett syndrome (RTT) is a rare neurological development, affecting mainly females. The congenital disease affects the central nervous system, and is one of the most common causes of severe intellectual disability. The aim of our study is to evaluate the effect of RTT on the quality of life of people who are affected. Both parents of 18 subjects, all female, diagnosed with RTT, took part in the research. Quality of life was assessed using the Italian version of the Impact of Childhood Illness Scale. This scale consists of 30 questions that investigate the effect of illness on children, parents and families. For each question, the parent was asked to rate two variables: frequency and importance. Another questionnaire was administered to obtain medical history, diagnostic and therapeutic data of the persons with RTT. Our data show that RTT has a considerable impact on both the child's development and the entire family. Parents' answers demonstrated that their child's illness had consequences for the child and how the family coped with it. For this reason, attention should be directed at psychological and social aspects, as well as attitudes, manners, reactions and effects such disturbances can have on the entire family.

Edukasi dan Peningkatan Kualitas Pengelolaan Obat di Rumah Tangga: Studi Kasus di Dusun Sidasari Wetan Desa Kubangkangkung Kawunganten Cilacap (Education and Quality Improvement of Drug Management in Family: A Case Study at Dusun Sidasari Wetan, Kubang

2018 ◽  
Vol 2 (2) ◽  
pp. 93
Author(s):  
Hendri Wasito ◽  
Hening Pratiwi ◽  
Adi Wibowo ◽  
Nia Kurnia Solihat
Keyword(s):  
Quality Improvement ◽  
Home Visit ◽  
Behavioral Changes ◽  
Drug Management ◽  
Educational Effort ◽  
The Family ◽  
Service Activity ◽  
Knowledge And Attitude

Drugs are an important component of health services that are the needs of the community. There is still a lack ofcommunity knowledge of medicines and management especially for family members, hence an educational effort as well asimprovement of quality of drug management in family through training program and mentoring by pharmacist. Thiscommunity service activity aims to determine the knowledge and attitude of the community in managing drugs in the familyand improve the quality of drug management by the community in the family. The activity was conducted in SidasariWetanKubangkangkung Village Kawunganten Cilacap. The workshop on drug management in family was conducted by pharmaciststo the 33 participants. Data collection was done by using questionnaire and observation through home visit. The result of theactivity shows that the increase of knowledge and attitude of the society in managing drugs in the familywere 10% and 7%,respectively. Workshop activities and mentoring by pharmacists can provide benefits and behavioral changes in family drugsmanagement.

The role of entrepreneurial families in entrepreneurial ecosystems: the family social capital approach

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Claudia Benavides-Salazar ◽  
Cristina Iturrioz-Landart ◽  
Cristina Aragón-Amonarriz ◽  
Asunción Ibañez-Romero
Keyword(s):  
Social Capital ◽  
Design Methodology ◽  
Content Type ◽  
Entrepreneurial Ecosystems ◽  
Family Social Capital ◽  
The Family ◽  
Depth Interviews ◽  
Entrepreneurial Dynamics

Purpose This paper aims to investigate how entrepreneurial families (EFs) influence the development of entrepreneurial ecosystems (EEs) by using the family social capital (FSC) approach. Design/methodology/approach For this paper, the authors analyzed the Manizales EE as a case study. The authors used a variety of data collection procedures, including in-depth interviews with 26 entrepreneurs and mentors. Findings The authors established how EFs affect EE development, identifying how the FSC bridging mechanisms impact the EE’s social and cultural attributes, boosting entrepreneurial dynamics. Originality/value The results indicated the relevance of EFs’ embeddedness and the degree of the FSC institutionalization in promoting of entrepreneurship within the EEs.

scholarly journals Kontribusi Muhasabah dalam Mengembangkan Resiliensi Pada Orang Tua Anak Berkebutuhan Khusus

2021 ◽  
Vol 6 (2) ◽  
pp. 244-262
Author(s):  
Fatma Laili Khoirun Nida
Keyword(s):  
Special Needs ◽  
Poor Quality ◽  
Children With Special Needs ◽  
Case Study Approach ◽  
Study Approach ◽  
Study Results ◽  
Resilience Factors ◽  
Depth Interviews

The phenomenon of the poor quality of parental care for children with disabilities makes resilience one of the psychological capital that contributes to improving the quality of care. This study describes how through a muhasabah intervention in Blimbingrejo Village, Nalumsari District, Jepara Regency. The purpose of this study was to provide information for parents of children with special needs about muhasabah interventions in developing the resilience abilities of parents when carrying out their care. The urgency of this research is to reduce parenting stress experienced by parents because of the developmental barriers of their children. This research is qualitative with a case study approach through in-depth interviews and observation techniques. The study results explain that the condition of children with special needs is often a stressor for their parents. However, parents can live with complete steadfastness as a form of their resilience. The pattern of resilience formed is supported mainly by thinking about what they are trying to do. There are indications of the meaning of resilience factors in the practice of muhasabah in the form of the ability to regulate emotions, develop optimism and empathy, control impulses and causal analysis, good self-efficacy and take wisdom as an indication of aspects of the reaching out process. The results of this study are helpful information in developing the concept and practice of caring for children with special needs.

scholarly journals Pengelolaan Ekowisata Boonpring oleh Badan Usaha Milik Desa (BUMDes) Dalam Meningkatkan Pendapatan Asli Desa

2021 ◽  
Vol 4 (2) ◽  
Author(s):  
Driana Leniwati ◽  
Aliya Nur Aisyah
Keyword(s):  
Qualitative Data ◽  
Case Study Design ◽  
Tourism Sector ◽  
Qualitative Descriptive ◽  
Community Data ◽  
The Village ◽  
Depth Interviews ◽  
Descriptive Method

The aimed of this study was to analyze the management of Boonpring Ecotourism by Village Owned Enterprises (BUMDes) in order to increase income of the village (PADes). This study uses a case study design with a qualitative descriptive method. Qualitative data obtained by conducting in depth interviews, observations and documentation. The informants in this study were the Head of village, the Head of BUMDes, staff and community. Data reduction, data presentation, trianggulation and conclusion are data analysis  used in this study. The results of the study stated that the management of Boonpring Ecotourism had been carried out well by the Village-Owned Enterprises (BUMDes) of Sanan Kerto in accordance with the cooperative, participatory, transparent, accountable, and sustainable principles. Good management of Boonpring Ecotourism is expected to increase Income of village in a sustainable manner by exploring the potential of villages through the tourism sector even though there are obstacles in the application of participatory principles, namely the quality of Human Resources (HR) that need to be trained.Keywords: Management Principles; tourismp; BUMDes; Income of Village. AbstrakTujuan dari penelitian ini adalah untuk menganalisis pengelolaan Ekowisata Boonpring oleh Badan Usaha Milik Desa (BUMDes) dalam rangka meningkatkan pendapatan desa (PADes). Penelitian ini menggunakan desain studi kasus dengan metode deskriptif kualitatif. Data kualitatif diperoleh dengan melakukan wawancara secara mendalam, observasi dan dokumentasi. Informan dalam penelitian ini adalah Kepala Desa, kepala BUMDes, karyawan, dan masyarakat. Reduksi data, penyajian data, trianggulasi dan penarikan kesimpulan merupakan analisis data yang digunakan dalam penelitian ini. Hasil penelitian menyatakan pengelolaan Ekowisata Boonpring sudah dilakukan dengan baik oleh Badan Usaha Milik Desa (BUMDes) Sanan kerto sesuai dengan prinsip kooperatif, partisipatif, emansipatif, transparan, akuntable, dan sustainable. Pengelolaan Ekowisata Boonpring yang baik diharapkan dapat meningkatkan Pendapatan Asli Desa secara berkelanjutan dengan menggali potensi desa melalui sektor pariwisata walaupun ada kendala dalam penerapan prinsip partisipatif yaitu kualitas Sumber Daya Manusia (SDM) yang perlu dilatih.Kata Kunci: Prinsip Pengelolaan, wisata, BUMDes, PADes. 

Idris Sardi’s Influence on Musical Development and Education in Indonesia

2022 ◽  
Vol 21 (2) ◽  
pp. 290-302
Author(s):  
Fu'adi Fu'adi ◽  
Putu Sudira ◽  
Kun Setyaning Astuti
Keyword(s):  
Music Education ◽  
Popular Music ◽  
Qualitative Method ◽  
Music Appreciation ◽  
Orchestral Music ◽  
The Family ◽  
New Strategy ◽  
Violin Playing ◽  
Depth Interviews

Idris Sardi is known as a music maestro in Indonesia. This study aims to reveal the influence of Idris Sardi on the development of music and its implications in music education. This study uses a qualitative method with a narrative approach. The data were collected through observation, in-depth interviews, and documentation. The research informants were carefully selected from the family, violin students, and colleagues of Idris Sardi in Jakarta and Bogor, West Java. The data were analyzed by organizing data and creating codes, describing codes in chronological categories and themes, developing interpretations, and visualizing data. The results showed that Idris Sardi was influential in developing (1) keroncong music by varying the tempo and expanding the repertoire; (2) the violin playing techniques included unique characters such as vibrato, glissando, and octave variations; (3) ethnic and popular music were made through orchestrations and collaboration with orchestral music. The implications in music vocational education were (1) problem-based learning by creating a new keroncong style to be accepted by society; (2) the improvement capability by exploring skills to play the violin; (3) life-based-learning by raising local and popular music to be qualified while enhancing the level of society’s music appreciation. In conclusion, Idris Sardi provided a strong influence on the music development in Indonesia, and the implication could be a new strategy to improve the quality of music education.

Economic Security and Empowerment of Rural Women

2020 ◽  
pp. 171-186
Author(s):  
Suganda Ramamoorthi
Keyword(s):  
Rural Women ◽  
Tamil Nadu ◽  
Economic Security ◽  
Economic Resources ◽  
Patriarchal Family ◽  
The Family ◽  
Private And Public ◽  
Gender Asymmetry ◽  
The Impact

Economic security is a fundamental cord that would enhance the empowerment levels of women. In the patriarchal family structure, women have little or no access to economic resources, making them vulnerable. Social sanction for femicide, social and cultural discriminatory practices, and violence against women have curtailed women's choices and freedom. The impact of the elimination of girl children and strong son preference has deprived women of their economic entitlements. The case study is of particular interest as it is undertaken in Usilampatti taluk in Tamil Nadu, India, which is notorious for the practice of female foeticide and infanticide leading to low sex ratio. This chapter is an attempt to identify how rural women who have escaped femicide negotiate with gender asymmetry, reorganize the power relations within the family and market structure, manage economic resources, and emerge as independent leaders both in the private and public domains.

scholarly journals Pathways Through Peer Assessment: Implementing Peer Assessment in a Lower Secondary Physics Classroom

2020 ◽  
Vol 18 (8) ◽  
pp. 1465-1484 ◽  
Author(s):  
Laura Ketonen ◽  
Markus Hähkiöniemi ◽  
Pasi Nieminen ◽  
Jouni Viiri
Keyword(s):  
Formative Assessment ◽  
Early Stage ◽  
Peer Assessment ◽  
Peer Feedback ◽  
Data Sources ◽  
Constructive Feedback ◽  
Audio Recordings ◽  
Field Notes

AbstractPeer assessment has been shown to advance learning, for example, by improving one’s work, but the variance of learning benefits within or between studies has not been explained. The purpose of this case study was to examine what kinds of pathways students have through peer assessment and to study which factors affect them when peer assessment is implemented in the early stage of physics studies in the context of conducting and reporting inquiry. Data sources used include field notes, audio recordings of lessons, student lab reports, written peer feedback, and student interviews. We examined peer assessment from the perspective of individual students and found 3 profiles of peer assessment: (1) students that improved their lab report after peer assessment and expressed other benefits, (2) students that did not improve their lab report but expressed other benefits, and (3) students that did not experience any benefits. Three factors were found to explain these differences in students’ pathways: (1) students’ engagement in conducting and reporting inquiry, (2) the quality of received feedback, and (3) students’ understanding of formative assessment. Most students experienced some benefits of peer assessment, even if they did not put effort into their own work or receive constructive feedback. Nevertheless, in this case study, both improving one’s work and experiencing other benefits of peer assessment required sufficient accomplishment of all 3 factors.

scholarly journals Mapping the Journey: Family Carers’ Perceptions of Issues Related to End-Stage Care of Individuals with Muscular Dystrophy or Motor Neurone Disease

2003 ◽  
Vol 19 (1) ◽  
pp. 36-42 ◽  
Author(s):  
Sky Dawson ◽  
Linda J. Kristjanson
Keyword(s):  
Muscular Dystrophy ◽  
Motor Neurone ◽  
Motor Neurone Disease ◽  
Perceived Needs ◽  
The Family ◽  
The Individual ◽  
End Stage ◽  
Depth Interviews ◽  
Neuromuscular Conditions

Progress in medical technology and treatment has resulted in more people with neurodegenerative conditions surviving for longer periods of time. This increased lifespan means that these individuals have a longer period of dependency on others, with a heightened need to maintain quality of life for both the individual and the family. Our paper reports on the findings of a study involving in-depth interviews with 16 carers to determine their perceived needs during the final stage of caring for someone with muscular dystrophy (MD) or motor neurone disease. Results suggest that the palliative care model has much to offer individuals with degenerative neuromuscular conditions and their families, but it is not yet recognized as an important part of care for young people with MD. Three major themes emerged in the analysis: reactions and responses, health system crossing points, reaching forward.

scholarly journals Views of mothers on the fundamental role of the Christian father as mentor in a nuclear family environment

2018 ◽  
Vol 52 (1) ◽  
Author(s):  
Fazel E. Freeks
Keyword(s):  
Lived Experience ◽  
Family Environment ◽  
Nuclear Family ◽  
Father Absence ◽  
The Family ◽  
Open Coding ◽  
Field Notes ◽  
Community Data ◽  
Depth Interviews

The present empirical study explored and described the views of mothers elicited through in-depth interviews. This research followed an explorative, interpretive and descriptive qualitative design by using purposive voluntary sampling. Mothers were selected by their lived experience and knowledge of the father absence problem, leadership, prominence in society, and involvement in their community. Data was collected through in-depth interviews, and field notes were taken. The data was analysed through open coding. The results of the empirical research in which mothers were involved indicated that the Christian father as mentor is deemed crucial and relevant within current families. Mentoring by the father is vital in the lives of children and should be implemented and emphasised within the family context. As mentor, the father should nurture the children spiritually and shape their character, thus helping them become complete, whole and, by the grace of God, holy ‘before God’ (coram Deo).

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