scholarly journals Outcomes important to patients with non-infectious posterior segment-involving uveitis: a qualitative study

2020 ◽  
Vol 5 (1) ◽  
pp. e000481
Author(s):  
Mohammad O Tallouzi ◽  
David J Moore ◽  
Nicholas Bucknall ◽  
Philip I Murray ◽  
Melanie J Calvert ◽  
...  
Keyword(s):  
Psychosocial Adjustment ◽  
Core Outcome Set ◽  
Well Being ◽  
Posterior Segment ◽  
Adult Patients ◽  
Group Discussions ◽  
Threatening Condition ◽  
Infectious Uveitis ◽  
Total Blindness ◽  
The Impact

ObjectiveUveitis, a group of disorders characterised by intraocular inflammation, causes 10%–15% of total blindness in the developed world. The most sight-threatening forms of non-infectious uveitis are those affecting the posterior segment of the eye, collectively known as posterior segment-involving uveitis (PSIU). Numerous different clinical outcomes have been used in trials evaluating treatments for PSIU, but these may not represent patients’ and carers’ concerns. Therefore, the aims of this study were to understand the impact of PSIU on adult patients’ and carers’ lives and to explore what outcomes of treatment are important to them.Methods and AnalysisFour focus group discussions were undertaken to understand the perspectives of adult patients (=18) and carers (10) with PSIU. Participants were grouped according to whether or not their uveitis was complicated by the sight-threatening condition uveitic macular oedema. Discussions were audio-recorded, transcribed and analysed using the framework analytical approach. Outcomes were identified and grouped into outcome domains.ResultsEleven core domains were identified as important to patients and carers undergoing treatment for PSIU, comprising (1) visual function, (2) symptoms, (3) functional ability, (4) impact on relationships, (5) financial impact, (6) psychological morbidity and emotional well-being, (7) psychosocial adjustment to uveitis, (8) doctor/patient/interprofessional relationships and access to healthcare, (9) treatment burden, (10) treatment side effects, and (11) disease control.ConclusionThe domains identified represent patients’ and carers’ experience and perspectives and can be used to reflect on outcomes assessed in PSIU. They will directly inform the development of a core outcome set for PSIU clinical trials.

scholarly journals Healthcare Professionals’ Views on the Most Important Outcomes for Non- Infectious Uveitis of the Posterior Segment: A Qualitative Study

2021 ◽  
Author(s):  
Mohammad O. Tallouzi ◽  
David J. Moore ◽  
Nicholas Bucknall ◽  
Philip. I Murray ◽  
Melanie J. Calvert ◽  
...  
Keyword(s):  
Disease Control ◽  
Nurse Practitioners ◽  
Psychosocial Adjustment ◽  
Access To Health Care ◽  
Healthcare Professionals ◽  
Core Outcome Set ◽  
Well Being ◽  
Posterior Segment ◽  
Focus Group Data ◽  
Infectious Uveitis

Abstract BackgroundUveitis refers to a range of conditions that result in intraocular inflammation. Non-infectious Intermediate, posterior and panuveitis are the most serious forms of uveitis grouped as Non-Infectious Uveitis affecting the Posterior Segment (NIU-PS). To evaluate new and existing treatments trialists and clinicians aim to report certain measurements known as outcomes. The aim of this study was to understand the perspectives of healthcare professionals on what outcomes they thought important for adult patients with NIU-PS and their carers.MethodsTwelve semi-structured telephone interviews were undertaken to understand the perspectives of healthcare professionals - ophthalmologists (n=5), nurse practitioners (n=3) and health policy-makers/commissioners (n=4) on outcomes for NIU-PS. Interviews were audio recorded, transcribed and thematically analysed and a domain framework developed with focus group data from patients and carers applied to the data. Findings were compared with the views of patients and carers and outcomes abstracted from a previously published systematic review.ResultsEleven core domains were identified as important to healthcare professionals, which is broadly comparable to those previously identified by patients and carers: (1) visual function, (2) symptoms, (3) functional ability, (4) impact on relationships, (5) financial impact, (6) psychological morbidity and emotional well-being (7) psychosocial adjustment to uveitis, (8) doctor / patient / interprofessional relationships and access to health care, (9) treatment burden, (10) treatment side effects, (11) disease control. Healthcare professionals placed more emphasis on some items and identified additional outcomes, particularly in the disease control domain.ConclusionAlthough healthcare professionals recognise all of the same domains as patients/carers these findings are not yet implemented in practice or clinical research. These findings provide the basis to reflect on the nature of those outcomes at present used in uveitis clinical practice and clinical trials with those utilised in the development process of a core outcome set for NIU-PS.

Impact on the family

2021 ◽  
pp. 111-125
Author(s):  
Veronica Dussel ◽  
Barbara Jones
Keyword(s):  
Social Care ◽  
Family Members ◽  
Well Being ◽  
Family Unit ◽  
Health And Social Care ◽  
The Family ◽  
Threatening Condition ◽  
Life Threatening ◽  
Limiting Condition ◽  
The Impact

In this chapter, we will focus on the importance of caring for the family of a child with a life-limiting condition (LLC) or life-threatening condition as a unit, each of the family members being integral to the well-being and care of the others. We recognize that the family unit itself is embedded within a wider context including the health and social care system, and more broadly within its society and culture. We discuss the concept of family, exploring the impact of having a child with an LLC, and how families adjust to this. We then expand on considerations about how to offer effective and timely support and help. We have included parents’ narratives with the aim of adding depth to the discussion, and in recognition of the truth of families’ own experiences.

Dopamine receptor D4 gene moderates the effect of positive and negative peer experiences on later delinquency: The Tracking Adolescents' Individual Lives Survey study

2013 ◽  
Vol 25 (4pt1) ◽  
pp. 1107-1117 ◽  
Author(s):  
Tina Kretschmer ◽  
Jan Kornelis Dijkstra ◽  
Johan Ormel ◽  
Frank C. Verhulst ◽  
René Veenstra
Keyword(s):  
Dopamine Receptor ◽  
Adolescent Development ◽  
Peer Relations ◽  
Psychosocial Adjustment ◽  
Genetic Factors ◽  
Well Being ◽  
Survey Study ◽  
Peer Experiences ◽  
The Impact ◽  
Dopamine Receptor D4

AbstractThe quality of adolescents' relationships with peers can have a lasting impact on later psychosocial adjustment, mental health, and behavior. However, the effect of peer relations on later problem behavior is not uniformly strong, and genetic factors might influence this association. This study used four-wave longitudinal (11–19 years) data (n = 1,151) from the Tracking Adolescents' Individual Lives Survey, a Dutch cohort study into adolescent development to test whether the dopamine receptor D4 polymorphism moderates the impact of negative (i.e., victimization) and positive peer experiences (i.e., social well-being) on later delinquency. Contrary to our expectations, results showed that carriers of the dopamine receptor D4 gene 4-repeat homozygous variant instead of those carrying the 7-repeat allele were more susceptible to the effects of both peer victimization and social well-being on delinquency later in adolescence. Findings of our study are discussed in light of other studies into genetic moderation of peer effects on adolescent development and the possibility that developmental specifics in adolescence, such as maturation processes in brain structure and functioning, may affect the interplay of environmental and genetic factors in this period in life.

scholarly journals Children Coping, Contextual Risk and their Interplay during the COVID-19 Pandemic: a Spanish Case

2020 ◽  
Author(s):  
Beatriz Domínguez-Álvarez ◽  
Laura López-Romero ◽  
Aimé Isdahl-Troye ◽  
José Antonio Gómez-Fraguela ◽  
Estrella Romero
Keyword(s):  
Psychosocial Adjustment ◽  
Age Groups ◽  
Well Being ◽  
Risk And Resilience ◽  
School Closures ◽  
Contextual Risk ◽  
Study Results ◽  
Child Coping ◽  
Age Dependent ◽  
The Impact

The COVID-19 pandemic has changed the lives of millions of people around the globe and some of the unprecedent emerged disruptions, are likely to have been particularly challenging for young children (e.g., school closures, social distancing measures, movement restrictions). Studying the impact of such extraordinary circumstances on their well-being is crucial to identify processes leading to risk and resilience. To better understand how Spanish children have adapted (or fail to) to the stressful disruptions resulting from the pandemic outbreak, we examined the effects of child coping and its interactions with contextual stressors (pandemic and family-related) on child adjustment, incorporating in our analysis a developmental perspective. Data was collected in April 2020, through parent-reports, during the acute phase of the pandemic and, temporarily coinciding with the mandatory national quarantine period imposed by the Spanish Government. A sample of 1,123 Spanish children (50% girls) aged three to 12 (Mage = 7.26; SD = 2.39) participated in the study. Results showed differences in the use of specific strategies by children in different age groups (i.e., 3-6, 7-9 and 10-12-year-olds). Despite the uncontrollable nature of the pandemic-related stressors, child disengagement coping was distinctively associated to negative outcomes (i.e., higher levels of behavioral and emotional difficulties), whereas engagement coping predicted psychosocial adjustment across all age groups. Moreover, interactively with child coping, parent fear of the future and parent dispositional resilience appear as relevant contextual factors to predict both negative and positive outcomes, but their effects seem to be age dependent, suggesting a higher contextual vulnerability for younger children. These findings might have implications for identifying individual and contextual risk and informing potential preventive interventions aimed to reduce the impact of future pandemic outbreaks on children of different ages.

scholarly journals Healthcare Providers and Caregivers’ Perspectives on Factors Underlying the Persistent Malnutrition of Children Aged 0-59 Months in Buhweju District, Southwestern Uganda

2020 ◽  
Author(s):  
Abaasa N Catherine ◽  
Catherine N Abaasa ◽  
Godfrey Zari Rukundo ◽  
Savino Ayesiga ◽  
Susan Pearl Atukunda ◽  
...  
Keyword(s):  
Healthcare Providers ◽  
Well Being ◽  
Nutrition Status ◽  
Growth Monitoring ◽  
Group Discussions ◽  
Team Members ◽  
Village Health Team ◽  
Western Uganda ◽  
The Impact ◽  
Southwestern Uganda

Abstract Background Nutritional well-being is fundamental to the attainment of the full social, economic, mental and physical potential of individuals, communities and populations. The nutritional well-being of infants and young children is positively and negatively affected by economic, environmental and maternal factors that range from food intake, health, sanitation and care. Several initiatives such as growth monitoring, vitamin A distribution, deworming programs have been undertaken to reduce the impact of nutritional deficiency and promotion of health of children under five years in Uganda. All regions of Uganda have registered unacceptably high levels of childhood malnutrition over the years, although with an uneven distribution across regions. Western Uganda has persistently registered the highest levels of malnutrition with Buhweju district having the highest levels above the national average. This study assessed health provider and caregiver perspectives on factors responsible for persistent malnutrition among children aged 0-59 months in Engaju and Nyakishana sub counties in Buhweju district.Methods Focus group discussions and key informant interviews with Village Health Team members and care takers of children aged 0-59 months in Engaju and Nyakishana sub-counties and healthcare providers in Buhweju district were conducted respectively to explore their perceptives on the factors responsible for persistent malnutrition in Buhweju District in May 2018.Results Inadequate childcare services, poverty and economic occupation, parental alcoholism and domestic violence as well as historic and geographic challenges were identified as factors responsible for persistent malnutrition among children aged 0-59 months in Engaju and Nyakishana sub counties in Buhweju district Conclusion Several factors are responsible for persistent malnutrition of children aged 0-59 months in Buhweju. Some can be readily addressed and should lead to improvement in the nutrition status of children in Buhweju district.

scholarly journals Development of a Core Outcome Set for Clinical Trials in Non-infectious Uveitis of the Posterior Segment

Ophthalmology ◽  
2021 ◽  
Author(s):  
Mohammad O. Tallouzi ◽  
Jonathan M. Mathers ◽  
David J. Moore ◽  
Nicholas Bucknall ◽  
Melanie J. Calvert ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Core Outcome Set ◽  
Posterior Segment ◽  
Core Outcome ◽  
Outcome Set ◽  
Infectious Uveitis

Psychosocial factors and chronic illness in childhood

1995 ◽  
Vol 10 (6) ◽  
pp. 297-305 ◽  
Author(s):  
C Zimmermann Tansella
Keyword(s):  
Chronic Illness ◽  
Psychosocial Adjustment ◽  
Emotional Adjustment ◽  
Well Being ◽  
Coping Resources ◽  
Intervention Programs ◽  
Developmental Approach ◽  
The Family ◽  
And Coping ◽  
The Impact

SummaryChronic illness in a child requires successful organisational and emotional adjustment of the child and the family. The way in which the child and the family adapt to the illness will affect their psychological well-being and their quality of life. This review summarizes recent research findings on the relationship between illness factors, individual and family functioning, coping strategies and psychosocial adjustment. The findings are presented within the framework of three complementary theoretical models: the family developmental approach; the psychosocial typology of illnesses; and the process model of stress and coping. These models are useful for a better understanding of the complex interactions between illness, family and coping and offer to the professionals engaged in the care of chronically sick children, guidelines for assessment and the development of intervention programs. The review starts with examining the impact of chronic illness on the psychosocial adjustment of the sick child, his/her siblings and parents. Then psychosocial Stressors and risk factors in terms of illness and family related characteristics are discussed. Coping resources and strategies are presented which have been shown to be related to child and parental adjustment; and finally, successful intervention programs are described.

scholarly journals Use of conditional cash transfers for addressing gender-based inequalities in health and education among children: studying the impact of the Shubh Laxmi scheme in Rajasthan, India

2020 ◽  
pp. 1-12
Author(s):  
RAJNISH RANJAN PRASAD ◽  
DIVYA SANTHANAM
Keyword(s):  
Preventive Health Care ◽  
Well Being ◽  
Conditional Cash Transfer ◽  
Cash Transfer ◽  
Group Discussions ◽  
Inequalities In Health ◽  
The Status ◽  
The Government ◽  
Gender Based ◽  
The Impact

Abstract In the last few decades, conditional cash transfer (CCT) programmes have become very popular for addressing different development challenges. The use of CCT programmes to promote enrolment in schools, improve preventive health care and increase household consumption in Latin America has been well documented. However, the potential of CCT programmes to change more deep-rooted norms is not very clear. The Shubh Laxmi scheme, a CCT programme, was started by the Government of Rajasthan, India, to improve the status of health and education among girls. A study was undertaken to understand the changes in beneficiaries’ perspectives due to scheme. A total of 95 beneficiaries were randomly selected and in-depth interviews were conducted in order to understand the impact of the scheme. In addition, two focus group discussions were conducted with 30 non-beneficiaries in order to understand their awareness about the scheme and their perceptions of girls. The findings show that the CCT programme has helped in generating a positive attitude among beneficiaries towards the survival, education and well-being of girls. The key challenge was low awareness of the scheme and of the procedures for claiming its benefits. This study highlights that CCT programmes are useful for nudging people to address gender-based inequalities in health and education among children; however, effective implementation remains key.

scholarly journals Children Coping, Contextual Risk and Their Interplay During the COVID-19 Pandemic: A Spanish Case

2020 ◽  
Vol 11 ◽  
Author(s):  
Beatriz Domínguez-Álvarez ◽  
Laura López-Romero ◽  
Aimé Isdahl-Troye ◽  
Jose Antonio Gómez-Fraguela ◽  
Estrella Romero
Keyword(s):  
Psychosocial Adjustment ◽  
Age Groups ◽  
Well Being ◽  
Risk And Resilience ◽  
School Closures ◽  
Contextual Risk ◽  
Study Results ◽  
Child Coping ◽  
Age Dependent ◽  
The Impact

The COVID-19 pandemic has changed the lives of millions of people around the globe and some of the unprecedent emerged disruptions, are likely to have been particularly challenging for young children (e.g., school closures, social distancing measures, movement restrictions). Studying the impact of such extraordinary circumstances on their well-being is crucial to identify processes leading to risk and resilience. To better understand how Spanish children have adapted to the stressful disruptions resulting from the pandemic outbreak, we examined the effects of child coping and its interactions with contextual stressors (pandemic and family related) on child adjustment, incorporating in our analysis a developmental perspective. Data was collected in April 2020, through parent-reports, during the acute phase of the pandemic and, temporarily coinciding with the mandatory national quarantine period imposed by the Spanish Government. A sample of 1,123 Spanish children (50% girls) aged 3 to 12 (Mage = 7.26; SD = 2.39) participated in the study. Results showed differences in the use of specific strategies by children in different age groups (i.e., 3–6, 7–9 and 10–12-year-olds). Despite the uncontrollable nature of the pandemic-related stressors, child disengagement coping was distinctively associated to negative outcomes (i.e., higher levels of behavioral and emotional difficulties), whereas engagement coping predicted psychosocial adjustment across all age groups. Moreover, interactively with child coping, parent fear of the future and parent dispositional resilience appear as relevant contextual factors to predict both negative and positive outcomes, but their effects seem to be age dependent, suggesting a higher contextual vulnerability for younger children. These findings might have implications for identifying individual and contextual risk and informing potential preventive interventions aimed to reduce the impact of future pandemic outbreaks on children of different ages.

scholarly journals The impact of classic bladder exstrophy-epispadias repair in adult patients without continence

2021 ◽  
Vol 8 (8) ◽  
pp. 2366
Author(s):  
Vinayak J. Shenage ◽  
Sanjay P. Dhangar ◽  
Awais A. Syed ◽  
Manisha Shengal
Keyword(s):  
Bladder Exstrophy ◽  
Well Being ◽  
Subjective Assessment ◽  
Single Stage ◽  
Surgical Correction ◽  
Adult Patients ◽  
Urinary Continence ◽  
Malignant Changes ◽  
The Impact ◽  
Epispadias Repair

Background: Bladder exstrophy-epispadias complex is a rare congenital anomaly. Very few patients grow with the condition intact in their adulthood which lead to compromise in the results of repair. We herein report our experience of correction of the defects in the adult patients in single stage without doing osteotomy andurinary diversion. Methods: The sample size was 13 patients over ten years. All were treated in single stage. Bladder neck repair was done using paraurethral tissue, primary abdominal closure was done without flap, epispadias repair was done using modified Cantwell-Ransley procedure and hernial repair was done without mesh. No osteotomy was done. All the patients were followed regularly. Minimum period of follow-up was one year. Urinary continence, change in habits and subjective assessment of well-being were also noted.Results: 86.4% patients were totally incontinent. Bladder and anterior abdominal wall were closed in all the patients. Complete epispadias was possible in15.3% patients and rest were converted into coronal hypospadias. Hernia was repaired in 23% patients. All the patients were satisfied with their cosmetic results and they were able to interact socially. Conclusions: Surgical correction of the exstrophy-epispadias complex is possible in adulthood in the hands of experts in single stage without osteotomy. Regular cystoscopic examination and urine cytology yearly are recommended to diagnose the malignant changes in the native bladder as early as possible. Psychological, social and self-level of satisfaction is high among these patients after the surgical correction.

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