scholarly journals Helping Families Cope with the Severe Stress of Dravet Syndrome

2016 ◽  
Vol 43 (S3) ◽  
pp. S9-S12 ◽  
Author(s):  
Peter Camfield ◽  
Carol Camfield ◽  
Kathleen Nolan
Keyword(s):  
Sleep Problems ◽  
Extended Family ◽  
Venous Access ◽  
Dravet Syndrome ◽  
Family Needs ◽  
Structured Interviews ◽  
Adult Care ◽  
Indwelling Catheter ◽  
Personal Time ◽  
Transition Clinic

AbstractA child with Dravet syndrome shakes family life to the core. Dravet syndrome usually has three phases: (1) up to 1-1½ years: with episodes of febrile status epilepticus but normal development; (2) age 1½ to ~6-10 years: with frequent seizures of varying types, developmental stagnation, behavioural and sleep problems; (3) after ~10 years: improvement in seizures, deteriorating gait, intellectual disability but some developmental gains. Complete seizure control is rare—simply prescribing medication is inadequate to help families. Based on structured interviews with 24 families and confirmed by more informal discussions with other families, we suggest strategies for coping with this catastrophe. A child with Dravet syndrome usually means that one parent cannot work—financial pressures should be anticipated. In Stage 1, the approach to status should include a written protocol. An indwelling catheter for rapid venous access may be helpful. In Stage 2, assistance finding qualified babysitters is required, and the extended family needs encouragement to help. Appropriate equipment, rescue medication and protocols should travel with the child. Siblings may benefit from a system of one parent “on call.” An internet support group provides an invaluable lifeline. In Stage 3, family isolation may be extreme—respite care and personal time for parents are important. Death from status, accidents and SUDEP (sudden unexplained death in epilepsy) occurs in 15%. Fear of SUDEP needs to be addressed. Moving from paediatric to adult care is frightening; an epilepsy transition clinic is useful. Attention to these realities may improve the quality of life for both child and family.

scholarly journals Experiences of New Zealand Haemodialysis Patients in Relation to Food and Nutrition Management: A Qualitative Study

Nutrients ◽  
2021 ◽  
Vol 13 (7) ◽  
pp. 2299
Author(s):  
Rachael M. McLean ◽  
Zhengxiu Xie ◽  
Vicky Nelson ◽  
Vili Nosa ◽  
Hla Thein ◽  
...  
Keyword(s):  
New Zealand ◽  
Qualitative Study ◽  
Thematic Analysis ◽  
Extended Family ◽  
Culturally Appropriate ◽  
Structured Interviews ◽  
Nutrition Management ◽  
Healthcare Needs ◽  
Food And Nutrition ◽  
Major Disruption

People receiving haemodialysis have considerable and complex dietary and healthcare needs, including co-morbidities. A recent New Zealand study has shown that few patients on haemodialysis are able to meet nutritional requirements for haemodialysis. This study aims to describe the perspectives and experiences of dietary management among patients on haemodialysis in New Zealand. This exploratory qualitative study used in-depth semi-structured interviews. Purposive sampling was used to recruit participants from different ethnic groups. Forty interviews were conducted, audio-recorded and transcribed verbatim. An inductive approach was taken using thematic analysis. Forty participants were interviewed. Participants spoke of major disruption to their lives as a result of their chronic kidney disease and being on haemodialysis, including loss of employment, financial challenges, loss of independence, social isolation and increased reliance on extended family. Most had received adequate dietary information, although some felt that more culturally appropriate support would have enabled a healthier diet. These findings show that further support to make the recommended dietary changes while on haemodialysis should focus on socio-cultural factors, in addition to the information already provided.

scholarly journals Social support from the perspective of adolescent victims of domestic violence

2014 ◽  
Vol 48 (4) ◽  
pp. 610-617 ◽  
Author(s):  
Diene Monique Carlos ◽  
Maria das Graças Carvalho Ferriani ◽  
Michelly Rodrigues Esteves ◽  
Lygia Maria Pereira da Silva ◽  
Liliana Scatena
Keyword(s):  
Social Support ◽  
Domestic Violence ◽  
Content Analysis ◽  
Qualitative Study ◽  
Interpersonal Relationships ◽  
Extended Family ◽  
Structured Interviews ◽  
The Social ◽  
Sources Of Support ◽  
Adolescent Victims

Objective: Assess the understanding of adolescents regarding the social support received in situations of domestic violence. Method: A qualitative study with data collection carried out through focus groups with 17 adolescent victims of domestic violence, institutionally welcomed in Campinas-SP, and through semi-structured interviews with seven of these adolescents. Information was analyzed by content analysis, thematic modality. Results: Observing the thematic categories it was found that social support for the subjects came from the extended family, the community, the Guardianship Council, the interpersonal relationships established at the user embracement institution and from the religiosity/spirituality. Conclusion: The mentioned sources of support deserve to be enhanced and expanded. With the current complexity of the morbidity and mortality profiles, especially in children and adolescents, the (re)signification and the (re)construction of health actions is imperative.



scholarly journals P138 Are adolescents prepared for transition? A survey of practice in Northern Ireland

Rheumatology ◽  
2020 ◽  
Vol 59 (Supplement_2) ◽  
Author(s):  
Claire Masih ◽  
Dearbhla McKenna ◽  
Michelle McHenry ◽  
Madeline Rooney
Keyword(s):  
Northern Ireland ◽  
Geographical Area ◽  
Retrospective Chart Review ◽  
Clinical Information ◽  
Transition Process ◽  
Young Person ◽  
Paediatric Rheumatology ◽  
Adult Care ◽  
Transition Clinic ◽  
Paediatric Service

Abstract Background In Northern Ireland we have a single paediatric rheumatology service in which patients often stay until the end of education, before transferring to adult care. We lack a formal transition clinic or uniform process for transition. We wished to investigate whether adolescents transitioning to adult rheumatology care are sufficiently prepared for the process. Methods We surveyed the charts of patients within the paediatric rheumatology service aged over 16 years. Excluding patients who had were not under active follow up and those who had completed transition we studied 86 patients in a retrospective chart review. We studied the seven areas of readiness for transfer as recommended in the 'Ready Steady Go' programme. Results We had a population eligible for transition of 57 female and 29 male patients between the ages of 16 and 26. Around fifty percent had JIA, most commonly oligoarticular and polyarticular with other diagnoses including Raynauds, JIO, mechanical and pain conditions. Fifteen of these had been referred to the appropriate geographical area for transfer to adult service and 71 were yet to be referred. Readiness for transfer was poorly documented. Lifestyle issues (diet, exercise) and vocational (school, hobbies) were the best addressed with 41 and 56 patients respectively having at least one discussion on these aspects. Knowledge, self advocacy, ADLs, psychosocial and transition aspects were poorly documented. Conclusion We acknowledged that time pressures may have restricted what was recorded following appointments with focus on clinical information. However, we are aware of the lack of a formal transition programme within Northern Ireland and we feel this may contribute to patients spending a relatively prolonged time within the paediatric service. We have implemented quality improvement by using the 'Ready Steady Go' questionnaires within the paediatric service to improve preparedness for adult transfer and are reviewing our service of paediatric transfer. Introduction of the ‘Hello to adult services’ questionnaire by adult rheumatologists may help to achieve a more successful transition process by highlighting areas in which the young person may benefit from extra care by their adult team. Disclosures C. Masih None. D. McKenna None. M. McHenry None. M. Rooney None.

The role of mobile devices in 21st-century family communication

2018 ◽  
Vol 7 (2) ◽  
pp. 248-264 ◽  
Author(s):  
Sharon L. Storch ◽  
Anna V. Ortiz Juarez-Paz
Keyword(s):  
Decision Making ◽  
Mobile Devices ◽  
Family Communication ◽  
Extended Family ◽  
Emotional Responses ◽  
Future Research ◽  
Structured Interviews ◽  
Theory Analysis ◽  
The Past

Use of media devices has evolved over the past 10–15 years and the resulting effects on family communication are of interest for this study. Through 26 semi-structured interviews, the authors sought to understand the role mobile devices play in family communication. Qualitative grounded theory analysis was used to find themes and interpret results (Creswell, 2013). One overarching paradoxical theme emerged from these data, family connect–family disconnect. In family connect, categories of across distance, reassurances, and boundaries are shared. Within family disconnect, distractions, misunderstandings, and negative emotional responses are conveyed. Future research avenues recommended are decision making related to mobile devices based on values and morals, in-depth social media and app usage, emoji emotional responses, individuals under 18 and between 18 and 30 years old, and a network analysis of one extended family.

Parenting a Child with Attention Deficit Hyperactivity Disorder: Qualitative Study from a Developing Nation, India

2017 ◽  
Vol 41 (S1) ◽  
pp. s303-s303
Author(s):  
R. Shah ◽  
A. Sharma ◽  
S. Grover ◽  
N. Chauhan ◽  
S. Jhanda
Keyword(s):  
Attention Deficit Hyperactivity Disorder ◽  
Attention Deficit ◽  
Parental Stress ◽  
Cultural Context ◽  
Extended Family ◽  
Cultural Factors ◽  
Structured Interviews ◽  
Hyperactivity Disorder ◽  
Competing Interest ◽  
High Degree

IntroductionLike elsewhere, studies from developing countries suggest that parents of children with attention deficit hyperactivity disorder (ADHD) report significant stress. Besides symptoms, parental stress stems from experiences in interpersonal, schooling and societal domains, which may in turn be influenced by socio-cultural factors. This is a highly under-studied area.Objectives and aimsExploring experiences in familial, schooling and societal areas amongst Indian parents and understanding these in a cultural context using experiential qualitative research methodology.MethodsIn-depth semi-structured interviews were conducted with consenting parents of 27 children diagnosed with ADHD (17 mothers; 10 fathers).ResultsAll parents reported experiencing moderate to high degree of stress, feeling worried and frustrated due to child's problems. 19 parents reported being “short-tempered”, while 1 mother expressed feeling “lost”. Majority reported strained relations with spouse and extended family. Mothers reported higher stress, more difficulties in family life, faced criticism from immediate family and community regarding handling of child, felt more embarrassment, guilt and sense of failure as a mother. Half of the parents avoided attending social gatherings. Other than 2 parents, all had negative experiences with schooling. Experiential descriptions included those of teachers being highly critical of child and parents, punitive, dismissive and discriminatory. Teacher had advised seeking treatment in only 6 children. Themes of blame, discrimination and rejection were identified.ConclusionsWe conclude that cultural factors such as stigma, blaming of parent (especially mother) and lack of knowledge regarding ADHD amongst teachers and society may be responsible for these experiences and needs further investigation.Disclosure of interestThe authors have not supplied their declaration of competing interest.

Randomised prospective phase II study of combination chemotherapy epidoxorubicin, cisplatin, 5-FU (ECF) versus epidoxorubicin, cisplatin, capecitabin (ECX) in patients with advanced or metastatic gastric cancer

2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 4571-4571
Author(s):  
J. Ocvirk ◽  
M. Rebersek ◽  
E. Skof
Keyword(s):  
Gastric Cancer ◽  
Phase Ii ◽  
Central Venous Access ◽  
Performance Status ◽  
Infusion Pump ◽  
Metastatic Gastric Cancer ◽  
Venous Access ◽  
Ecog Performance Status ◽  
Indwelling Catheter ◽  
Phase Ii Studies

4571 Background: In phase II studies ECF with 5- FU inf. resulted in response rates (RR) > 50 %. Despite high responses the potential drawback of ECF may be the poor patient’s (pts) acceptability of the indwelling catheter and external infusion pump and related complications: sepsis, catheter-related infections, shoulder pain, thrombosis and pneumothorax. Capecitabin can maintain a constant level of 5- FU without complications and inconvenience associated with central venous access. The aim was to compare the efficacy and safety ECF versus ECX. Secondary endpoint was overall survival. Methods: Pts with histological proven, previously untreated advanced or metastatic gastric cancer, >18 years, ECOG performance status 0- 2 and adequate organ and hematological function were randomized to ECF or ECX. In ECF epidoxorubicin 50 mg/m2 and cisplatin 60 mg/m2 were administrated on day 1 by i.v., 5- FU 200 mg/m2/day was administrated by cont. inf. day 1- 14 of each cycle. Cycle was repeated every 3 weeks. In ECX epidoxorubicin 50 mg/m2 and cisplatin 60 mg/m2 were administrated on day 1 by i.v., capecitabin 825 mg/m2 twd was administrated orally day 1- 14. Cycle was repeated every 3 weeks. Results: Seventy- one pts were enrolled in this study between Jan 03 to Dec 05. Male 80 %, median age 56 yrs (40- 77). Thirty pts received ECF and 41 pts received ECX . All pts were assessable for responses and toxicity. The overall clinical RR were 45 % including 12.9 % partial responses (PR) and 6.4 % complete responses (CR) in ECF group and 69 % including 21.4 % PR and 4.7 % CR in ECX group. Median OS and TTP were 8.8 months (mos) ± 7.8 and 6.0 mos ± 4.4 in ECF group and 10.5 mos ± 7.2 and 7.0 mos ± 4.6 in ECX group respectively. The most frequent grade ¾ side effects graded according to CTCAE - 3 were fatigue - 20 % in ECF group and 19.5 % in ECX group, hematological (neutropenia) - 16 % in ECF group and 4.8 % in ECX group, nausea - 10 % in ECF group and 7.3 % in ECX group, diarrhea - 2.4 % in ECX group, hand- foot syndrome - 2.4 % in ECX group. Conclusions: ECX is at least effective as ECF with less toxic pattern and more convenient for pts and could replace ECF in first- line therapy in pts with advanced or metastatic gastric cancer. No significant financial relationships to disclose.

scholarly journals Agriculture À Base D’anacarde Et Formes Traditionnelles De Mobilisation De La Main D’oeuvre Agricole Chez Les Fohobélé Au Centre-Nord De La Côte d'Ivoire

2021 ◽  
Vol 17 (21) ◽  
pp. 265
Author(s):  
Ouattara Nanfouhoro Paul-Kévin
Keyword(s):  
Labor Force ◽  
Nuclear Family ◽  
Extended Family ◽  
Social Institution ◽  
Local Economy ◽  
Mutual Aid ◽  
Structured Interviews ◽  
Local Actors ◽  
The One ◽  
The Impact

Le système de production agricole des Fohobélé est basé sur une main d’oeuvre provenant principalement de la famille dite élargie et du nabonron qui est une institution sociale destinée à mutualiser la force de travail. A la suite de l’adoption de la culture de l’anacarde, l’économie locale s’est structurée autour d’une économie de plantation en remplacement de l’économie fondée sur la culture de rente qu’est le coton. Le présent article vise d’une part à connaitre l’impact de la culture de l’anacarde sur les structures sociales de mobilisation de la main d’oeuvre agricole des Fohobélé et d’autre part à découvrir les nouvelles stratégies de formation de la force de travail agricole. A travers des entretiens semi-directifs avec les acteurs locaux et des observations de terrain, il ressort de l’étude que l’adoption de cette nouvelle spéculation agricole a déstructuré les formes traditionnelles de la force de travail. La famille traditionnelle s’est éclatée pour laisser la place à des familles nucléaires. Le nabonron, forme d’entraide locale a disparu. La force de travail provient désormais de la famille nucléaire avec un rôle plus accru des femmes, des prestations monétarisées et de l’usage des produits chimiques dans l’agriculture. The Fohobélé agricultural production system is based on a workforce mainly coming from the so-called extended family and the nabonron, which is a social institution intended to pool the labor force. Following the adoption of cashew cultivation, the local economy was structured around a plantation economy to replace the economy based on the cash crop of cotton. This article aims on the one hand to know the impact of cashew cultivation on the social structures of mobilization of the agricultural workforce of the Fohobélé and on the other hand to discover the new strategies of strength training agricultural work. Through semi-structured interviews with local actors and field observations, it emerges from the study that the adoption of this new agricultural speculation has deconstructed the traditional forms of the labor force. The traditional family has split up to make way for nuclear families. The nabonron, a form of local mutual aid, has disappeared. The labor force now comes from the nuclear family with a greater role for women, cash benefits and the use of chemicals in agriculture.

scholarly journals “Nothing to Lose, Absolutely Everything to Gain”: Patient and Caregiver Expectations and Subjective Outcomes of Deep Brain Stimulation for Treatment-Resistant Depression

2021 ◽  
Vol 15 ◽  
Author(s):  
Cassandra J. Thomson ◽  
Rebecca A. Segrave ◽  
Paul B. Fitzgerald ◽  
Karyn E. Richardson ◽  
Eric Racine ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Deep Brain Stimulation ◽  
Informed Consent ◽  
Brain Stimulation ◽  
Family Needs ◽  
Treatment Resistant Depression ◽  
Treatment Resistant ◽  
Structured Interviews ◽  
Resistant Depression ◽  
Deep Brain

Background: How “success” is defined in clinical trials of deep brain stimulation (DBS) for refractory psychiatric conditions has come into question. Standard quantitative psychopathology measures are unable to capture all changes experienced by patients and may not reflect subjective beliefs about the benefit derived. The decision to undergo DBS for treatment-resistant depression (TRD) is often made in the context of high desperation and hopelessness that can challenge the informed consent process. Partners and family can observe important changes in DBS patients and play a key role in the recovery process. Their perspectives, however, have not been investigated in research to-date. The aim of this study was to qualitatively examine patient and caregivers’ understanding of DBS for TRD, their expectations of life with DBS, and how these compare with actual experiences and outcomes.Methods: A prospective qualitative design was adopted. Semi-structured interviews were conducted with participants (six patients, five caregivers) before DBS-implantation and 9-months after stimulation initiation. All patients were enrolled in a clinical trial of DBS of the bed nucleus of the stria terminalis. Interviews were thematically analyzed with data saturation achieved at both timepoints.Results: Two primary themes identified were: (1) anticipated vs. actual outcomes, and (2) trial decision-making and knowledge. The decision to undergo DBS was driven by the intolerability of life with severe depression coupled with the exhaustion of all available treatment options. Participants had greater awareness of surgical risks compared with stimulation-related risks. With DBS, patients described cognitive, emotional, behavioral and physical experiences associated with the stimulation, some of which were unexpected. Participants felt life with DBS was like “a roller coaster ride”—with positive, yet unsustained, mood states experienced. Many were surprised by the lengthy process of establishing optimum stimulation settings and felt the intervention was still a “work in progress.”Conclusion: These findings support existing recommendations for iterative informed consent procedures in clinical trials involving long-term implantation of neurotechnology. These rich and descriptive findings hold value for researchers, clinicians, and individuals and families considering DBS. Narrative accounts capture patient and family needs and should routinely be collected to guide patient-centered approaches to DBS interventions.

scholarly journals Analysis of the Role of Fish Basket Women towards Household Income in Eretan Wetan Village, Indramayu District, West Java

2021 ◽  
pp. 44-51
Author(s):  
Ayodhia Arman ◽  
Zuzy Anna ◽  
Eddy Afrianto ◽  
Atikah Nurhayati
Keyword(s):  
Household Income ◽  
Sampling Method ◽  
Sampling Technique ◽  
Coefficient Of Determination ◽  
Family Needs ◽  
Structured Interviews ◽  
West Java ◽  
Her Family

The role of the fish basket woman is not only as a housewife but also as a breadwinner, thus the fish basket woman has a dual role in her family. Fish basket women help their husbands work to be able to meet family needs. This study aims to analyze household income as well know the motivation to work of women as fish baskets in increasing working household income and know the factors that affect the income of fish basket women in increasing household income in Eretan Wetan Village, Indramayu Regency, West Java. The research method used in this research is a case study and interviews using a questionnaire. The sampling technique used an accidental sampling method with a total of 50 respondents and collecting data using observation techniques, structured interviews, and documentation techniques. The results showed that the role of women with fish baskets on household income in Eretan Wetan Village, Indramayu Regency, West Java was quite significant by obtaining an average income of IDR 1,676,135 per month. Factors that affect the income of working basket women include helping their husbands, wages that are not appropriate, helping household income and the husband's income is uncertain. The coefficient of determination shown by Nagelkerke R-Square, age, education level, number of family members, husband's permission, and husband's income affect women's interest in working by 100.0%. Women’s interest in working is not influenced by any other factors included in the research mode.

scholarly journals Transitioning behaviourally infected HIVpositive young people into adult care: Experiences from the young person’s point of view

2013 ◽  
Vol 14 (1) ◽  
pp. 20-24 ◽  
Author(s):  
C Katusiime ◽  
R Parkes-Ratanshi ◽  
A Kambugu
Keyword(s):  
Young Adults ◽  
Young Adult ◽  
Young People ◽  
Best Practice ◽  
Sub Saharan Africa ◽  
Hiv Care ◽  
People Living With Hiv ◽  
Care Providers ◽  
Adult Care ◽  
Transition Clinic

Background. There is limited literature on the transition of young people living with HIV/AIDS (YPLHIV) from adolescent/young adult HIV care to adult HIV care in sub-Saharan Africa. Objective. We aimed to share the experiences of HIV-seropositive young adults transitioning into adult care, to inform best practice for such transitioning. Methods. We conducted a retrospective evaluation of the transition of 30 young adults aged ≥25 years from our adolescent/young adult HIV clinic at the Infectious Diseases Institute, Makerere University, Kampala, Uganda, to adult HIV healthcare services between January 2010 and January 2012. Results. Six major themes emerged from the evaluation: (i) adjustment to adult healthcare providers, (ii) the adult clinic logistics, (iii) positive attributes of the adult clinic, (iv) transfer to other health centres, (v) perceived sense of stigma, and (vi) patient-proposed recommendations. A model for transitioning YPLHIV to adult care was proposed. Conclusion. Th ere is a paucity of evidence to inform best practice for transitioning YPLHIV to adult care in resource-limited settings. Ensuring continuity in HIV care and treatment beyond young adult HIV programmes is essential, with provision of enhanced support beyond the transition clinic and youth-friendly approaches by adult-oriented care providers. S Afr J HIV Med 2013;14(1):20-23. DOI:10.7196/SAJHIVMED.885

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