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.

“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

Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease

2006 ◽  
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Childhood Cancer ◽  
Children And Adolescents ◽  
Peer Relationships ◽  
Sickle Cell ◽  
Cell Disease ◽  
Life Issues ◽  
Art Research

Over recent decades, tremendous advances in the prevention, medical treatment, and quality of life issues in children and adolescents surviving cancer have spawned a host of research on pediatric psychosocial oncology. This important volume fulfills the clear need for an up-to-date, comprehensive handbook for practitioners that delineates the most recent research in the field--the first of its kind in over a decade. Over 60 renowned authors have been assembled to provide a thorough presentation of the state-of-the art research and literature, with topics including: -Neuropsychological effects of chemotherapy and radiation therapy -Bone marrow transplantation -Important issues about quality of life during and following treatment -Collaborative research among child-focused psychologists -Standards of psychological care for children and adolescents -Stress and coping in the pediatric cancer experience -The role of family and peer relationships The Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease represents both multidisciplinary and international efforts, an alliance between physicians and parents, and a combination of research and service. With a wealth of information of great interest to patients and their families, this volume will also be a welcome resource to the psychologists, psychiatrists, pediatricians, oncologists, nurses, and social workers who confront these issues as they help children and their families through the treatment, recovery, and grieving processes.

Advantages of a mini right axillary thoracotomy for congenital heart defect repair in children

2021 ◽  
pp. 1-6
Author(s):  
Jannika Dodge-Khatami ◽  
Ali Dodge-Khatami
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Global Health ◽  
Congenital Heart ◽  
Surgical Repair ◽  
Median Sternotomy ◽  
Axillary Approach ◽  
Post Operative Pain ◽  
The Right

Abstract Objectives: The mini right axillary thoracotomy is an alternative surgical approach to repair certain congenital heart defects. Quality-of-life metrics and clinical outcomes in children undergoing either the right axillary approach or median sternotomy were compared. Methods: Patients undergoing either approach for the same defects between 2018 and 2020 were included. Demographic details, operative data, and outcomes were compared between both groups. An abbreviated quality of life questionnaire based on the Infant/Toddler/Child Health Questionnaires focused on the patient’s global health, physical activity, and pain/discomfort was administered to all parents/guardians within two post-operative years. Results: Eighty-seven infants and children underwent surgical repair (right axillary thoracotomy, n = 54; sternotomy, n = 33) during the study period. There were no mortalities in either group. The right axillary thoracotomy group experienced significantly decreased red blood cell transfusion, intubation, intensive care, and hospital durations, and earlier chest tube removal. Up to 1 month, parents’ perception of their child’s degree and frequency of post-operative pain was significantly less after the right axillary thoracotomy approach. No difference was found in the patient’s global health or physical activity limitations beyond a month between the two groups. Conclusions: With the mini right axillary approach, surrogates of faster clinical recovery and hospital discharge were noted, with a significantly less perceived degree and frequency of post-operative pain initially, but without the quality of life differences at last follow-up. While providing obvious cosmetic advantages, the minimally invasive right axillary thoracotomy approach for the surgical repair of certain congenital heart lesions is a safe alternative to median sternotomy.

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.

scholarly journals COVID-19 and Quality of Life: Twelve Reflections

2021 ◽  
Author(s):  
Daniel T. L. Shek
Keyword(s):  
Quality Of Life ◽  
Digital Divide ◽  
Well Being ◽  
Sudden Onset ◽  
Economic Disadvantage ◽  
Conflict Prevention ◽  
Collective Rights ◽  
The World ◽  
Life Issues

AbstractCOVID-19 has severely affected the world since December 2020. Because of its sudden onset and highly contagious nature, the world has responded in a “crisis management” manner. With effective vaccines almost available, it is appropriate at this time to have some reflections about COVID-19 in relation to the quality of life issues. In this paper, we highlight twelve issues for reflection, which can help us better prepared for future pandemics. These include: digital divide, health inequality, gender inequality, economic disadvantage, family well-being, impact on holistic well-being, economic development versus saving lives, consumption versus environmental protection, individual rights versus collective rights, international collaboration versus conflict, prevention of negative well-being, and promotion of positive well-being.

scholarly journals Guided Self-help Teletherapy for Behavioural Difficulties in Children with Epilepsy

2021 ◽  
Author(s):  
Sophie Bennett ◽  
Isobel Heyman ◽  
Sophia Varadkar ◽  
Anna Coughtrey ◽  
Fahreen Walji ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Unmet Need ◽  
Hospital Setting ◽  
Physical And Mental Health ◽  
Paediatric Hospital ◽  
Complex Needs ◽  
Self Help ◽  
Behavioural Difficulties

AbstractBehavioural difficulties impact greatly upon quality of life for children with chronic illness and their families but are often not identified or adequately treated, possibly due to the separation of physical and mental health services. This case study describes the content and outcomes of guided self-help teletherapy for behavioural difficulties in a child with epilepsy and complex needs using an evidence-based behavioural parenting protocol delivered within a paediatric hospital setting. Behavioural difficulties and progress towards the family’s self-identified goals were monitored at each session. Validated measures of mental health and quality of life in children were completed before and after intervention and satisfaction was measured at the end of treatment. Measures demonstrated clear progress towards the family’s goals and reduction in weekly ratings of behavioural difficulties. This case demonstrates that a guided self-help teletherapy approach delivered from within the paediatric setting may be one way of meeting unmet need.

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