Bedouin mothers of young children with developmental disability – Stigma, quality of life and collaboration with professionals

2021 ◽  
Vol 108 ◽  
pp. 103819
Author(s):  
Iris Manor-Binyamini ◽  
Michal Schreiber-Divon
Keyword(s):  
Quality Of Life ◽  
Young Children ◽  
Developmental Disability ◽  
Disability Stigma

scholarly journals 4580 Development of a play-based coaching intervention to improve quality of life and wellbeing for mothers with cancer and their young children

2020 ◽  
Vol 4 (s1) ◽  
pp. 27-27
Author(s):  
Rosa Roman-Oyola ◽  
Anita Bundy ◽  
Eida Castro ◽  
Osiris Castrillo
Keyword(s):  
Quality Of Life ◽  
Young Children ◽  
Depression Symptoms ◽  
Improve Quality ◽  
Structured Interviews ◽  
Yield Data ◽  
Implementation Phase ◽  
Coaching Intervention ◽  
Phase 1B

OBJECTIVES/GOALS: Mothers with cancer who have young children experience life disruptions when treatment procedures limit mother-child interactions. This study proposes the development of an intervention combining the Coaching approach with the Model of Playfulness to improve Quality of Life (QoL) and wellbeing of these patients and their young children. METHODS/STUDY POPULATION: This embedded mixed method study will be guided by the two initial phases of the ORBIT Model for the development of behavioral interventions for patients with chronic diseases. Participants will be mothers in the post-acute treatment stage of cancer (n = 6) and their children who are between 2 years and a half and 6 years, 11 months. Phase 1A, Definition, builds on qualitative data from a concurrent study exploring the experiences of mothers with cancer playing with their young children. As part of this phase, we will develop a play-based coaching intervention. In Phase 1B, Refinement, we will employ in-depth semi-structured interviews and standardized tools to evaluate acceptability of the intervention and preliminary outcomes. This will serve to further refine the intervention. RESULTS/ANTICIPATED RESULTS: Phase 1A will yield a plan for the intervention and data to enhance its initial implementation. Phase 1B will yield data, from the perspective of the mothers, about acceptability of the intervention procedures (e.g., delivery strategy, place for the intervention, time devoted, and outcome measures). This will enable modifications to the intervention. Additionally, Phase IB will yield preliminary data from specific QoL and wellbeing measures. For the mother, data about anxiety and depression symptoms, stress levels, and parental self-efficacy; for the child, emotional and behavioral indicators; for both: playfulness. DISCUSSION/SIGNIFICANCE OF IMPACT: This study entails the development of an intervention to enhance QoL and wellbeing of mothers with cancer and their children. Play moments as the centerpiece of the intervention, represent an innovative approach. Findings will guide the design of future feasibility studies to advance the development of this outcome driven intervention.

“Growing pains” in young children: A study of the profile, experiences and quality of life issues of four to six year old children with recurrent leg pain

The Foot ◽  
2006 ◽  
Vol 16 (3) ◽  
pp. 120-124 ◽  
Author(s):  
Angela M. Evans ◽  
Sheila D. Scutter ◽  
Linda M.G. Lang ◽  
Brenton R. Dansie
Keyword(s):  
Quality Of Life ◽  
Young Children ◽  
Leg Pain ◽  
Growing Pains ◽  
Life Issues

Quality of Life and Voice Outcomes after Thyroid Ala Graft Laryngotracheal Reconstruction in Young Children

2011 ◽  
Vol 144 (5) ◽  
pp. 770-777 ◽  
Author(s):  
Yamilet Tirado ◽  
Neil K. Chadha ◽  
Jennifer Allegro ◽  
Vito Forte ◽  
Paolo Campisi
Keyword(s):  
Quality Of Life ◽  
Young Children ◽  
Laryngotracheal Reconstruction

Implications for, and the Meaning of, Supporting Young Rural Alaskan Children with Complex Needs

1995 ◽  
Vol 14 (4) ◽  
pp. 9-18 ◽  
Author(s):  
Susan Ryan-Vincek
Keyword(s):  
Quality Of Life ◽  
Young Children ◽  
Multiple Disabilities ◽  
Policy Makers ◽  
Complex Needs ◽  
Care Givers ◽  
Rural Alaska ◽  
Life Issues ◽  
The Right

Supporting young children, who experience complex multiple disabilities in their homes and communities, has become an important feature of early intervention programs throughout the country. How parents and professionals view quality of life issues for these young children can provide information for interventionists, policy makers, and care givers. Qualitative research methods were employed over a three-year period to investigate perceptions of parents and professionals regarding support for young children who experience complex multiple disabilities. Descriptive themes emerged from the data that characterize features of support resulting in quality of life for young children living in rural Alaska who experience complex multiple disabilities. Some of these themes were “getting the right equipment at the right time,” “caring and consistent professionals,” and “responsive and flexible medical and support systems.” Findings indicated discrepancies between parents who live in rural Alaska and professionals over (a) perceptions of what support means and (b) the focus of some policies and systems.

scholarly journals Health-related quality of life in children with congenital heart disease aged 5 to 7 years: a multicentre controlled cross-sectional study

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Hamouda Abassi ◽  
Helena Huguet ◽  
Marie-Christine Picot ◽  
Marie Vincenti ◽  
Sophie Guillaumont ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Children ◽  
Congenital Heart ◽  
Cross Sectional Study ◽  
Health Related Quality ◽  
Sectional Study ◽  
Cross Sectional ◽  
Related Quality ◽  
Health Related

Abstract Background In the context of tremendous progress in congenital cardiology, more attention has been given to patient-related outcomes, especially in assessing health-related quality of life (HRQoL) of patients with congenital heart diseases (CHD). However, most studies have mainly focused on teenagers or adults and currently, few HRQoL controlled data is available in young children. This study aimed to evaluate HRQoL of children with CHD aged 5 to 7 y.o., in comparison with contemporary peers recruited in school, as well as the factors associated with HRQoL in this population. Methods This multicentre controlled prospective cross-sectional study included 124 children with a CHD (mean age = 6.0 ± 0.8 y, 45% female) during their outpatient visit and 125 controls (mean age = 6.2 ± 0.8 y, 54% female) recruited at school. A generic paediatric HRQoL instrument was used (PedsQL 4.0). Results Self-reported HRQoL in children with CHD was similar to controls, overall (73.5 ± 1.2 vs. 72.8 ± 1.2, P = 0.7, respectively), and for each dimension. Parents-reported HRQoL was significantly lower in the CHD group than in controls. HRQoL was predicted by the disease severity and by repeated invasive cardiac procedures (surgery or catheterization). Conclusion HRQoL in young children with CHD aged 5 to 7 years old was good and similar to controls. This study contributed to the growing body of knowledge on HRQoL in congenital cardiology and emphasized the need for child and family support in the most complex CHD. Trial registration This study was approved by the institutional review board of Montpellier University Hospital (2019_IRB-MTP_02-19) on 22 February 2019 and was registered on ClinicalTrials.gov (NCT03931096) on 30 April 2019, https://clinicaltrials.gov/ct2/show/NCT03931096.

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