scholarly journals Support for Families of Youths and Adults with Intellectual Disabilities: Contributions of a Program from Families’ and Specialists’ Perspectives

2021 ◽  
Vol 11 (2) ◽  
pp. 88
Author(s):  
Maria Villaescusa ◽  
Natxo Martínez-Rueda ◽  
Almudena Fernández

A family-centered approach (FCA) is recognized as a set of values, principles, and practices aimed at strengthening families’ abilities to promote the development and well-being of its members. Despite the limited information available, results show the positive relationship between the support model, based on the collaboration between families and specialists, and family empowerment. This paper seeks to analyze the opinions of families and specialists on their participation in an intervention program for families of youths and adults with disabilities. Thirteen families and eight specialists participated in the study that used qualitative techniques, such as interviews and discussion groups, and a questionnaire to gather information about the families’ and specialists’ viewpoints over one year. Results show that families welcomed their involvement in the program. Both families and specialists recognize that creating a space for the whole family is the main contribution of the program, as it highlights the importance of considering the family’s entire system as a support unit, as well as the close relationship between the individual’s and family’s quality of life (FQoL).

2018 ◽  
Vol 99 (2) ◽  
pp. 100-109
Author(s):  
Shirley N. Sparks ◽  
Rosemary Tisch

Celebrating Families!™ (CF!) is a manualized family-centered program focused on the goal of breaking the cycle of generational substance use disorders (SUDs). It is one of the few evidence-based family-focused practices listed on Substance Abuse and Mental Health Services Administration’s National Registry of Evidence-Based Programs and Practices. Compared to another evidence-based program, Strengthening Families, CF! showed significant impact on family organization, positive parenting, parent involvement, and alcohol and drug use reduction. CF! is shown to be successful in unifying families from family dependency courts and as a prevention program for SUDs when offered by community social service agencies. A preliminary efficacy study illustrates changes within participating families consistent with the goal. The study’s purpose was to test the hypothesis that a family skills program such as CF! changed behavior by reducing risk factors and increasing protective factors. Data from 20 cycles of the program revealed that parents ( N = 263), referred from family drug court, expressed significant behavior changes toward their children in ways that increased protective factors after the 16-week program, and youth ( N = 106) showed better understanding of SUDs. Results suggest that this family skills program can be an intervention program for families at-risk for perpetuating the cycle of addiction, as well as prevention of family violence, abuse, and neglect. Agencies that serve families at risk can use the program to prevent costly foster care placements and SUDs by providing such programs.


2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 546-546
Author(s):  
Nancy Hodgson ◽  
Darina Petrovsky

Abstract Irregular sleep-wake patterns are common in persons living with dementia (PLWD), pose a great burden to caregivers, and are the principal causes of distress and institutionalization of PLWD. A growing body of research supports the importance of activity-based interventions to reduce the frequency and intensity of sleep wake disruption, reduce neuropsychiatric symptoms, and improve quality of life. To date, there are no studies linking sleep disruption and well-being with the nature and timing of activity. This session focuses on lessons learned from the Healthy Patterns Study - a randomized trial of a home-based activity intervention in 200 dyads of PLWD and their caregivers (NCT03682185). Session 1 focuses on the main findings from the clinical trial. Session 2 focuses on the cultural adaptation of the timed activity protocol to improve quality of life (QOL), improve sleep and reduce neuropsychiatric symptoms in older Latinos Session 3 describes the community outreach efforts used over a one-year period to recruit a diverse sample of PLWD and their caregivers for the Healthy Patterns trial. Session 4 examine the relationship between caregiver mastery and neuropsychiatric symptoms in PLWD. Together these findings highlight the complex role of sleep and wake activity in promoting well-being in persons with dementia.


Blood ◽  
2005 ◽  
Vol 106 (11) ◽  
pp. 1322-1322
Author(s):  
Brian Bolwell ◽  
Linda McLellan ◽  
Larry Foster ◽  
Lisa Rybicki ◽  
Ronald M. Sobecks ◽  
...  

Abstract Quality of life (QOL) data concerning allogeneic BMT recipients is relatively sparse. We surveyed allogeneic BMT recipients at baseline, one month post-transplant, and one year from transplant attempting to determine fluctuations in QOL over time. We used the FACT-BMT tool, which consists of five component scores, including physical well-being (PWB), social well-being (SWB), emotional well-being (EWB), functional well-being (FWB), and additional concerns (AC). PWB, SWB, and FWB uses a 0–28 point scale while EWB ranges from 0–24. Fifty-three patients were initially entered into this analysis, all of whom received ablative allogeneic transplants from 6/2003 to 6/2005. Median age was 46 years; the majority (57%) were female; underlying diagnoses included AML (42%), ALL (23%), MDS (13%), and other (22%). Median time from diagnosis to transplant was rapid, at 5.2 months. Fifty-one percent had a matched related donor, and 49% had a matched unrelated donor. As of August 2005, 70% of these 53 patients are alive. This analysis compares scores obtained one month from transplant and one year from transplant to baseline values. The average hospital length of stay for this ablative transplant was 29 days. One month after transplant, 21% of patients had grade 2–4 acute GVHD. The median WBC was 4.4 K/μL and the median platelet count was 51 K/μL. When surveyed one month post-transplant, not surprisingly, patients had a significant deterioration of physical well-being and functional well-being scores as shown in the table below. However, this was coupled by a significant increase in emotional well-being: FACT-BMT SCORES: median (range) Component Baseline (n = 53) 1-month post-transplant BMT (n = 53) 1-month p-value compared to baseline 12-months post-BMT (n = 23) 12-month p-value compared to baseline PWB 21 (6–28) 18 (2–26) p < 0.001 21 (3–28) 0.82 FWB 17 (0–27) 13 (4–23) p = 0.006 17 (6–27) 0.46 EWB 17 (3–24) 19 (1–24) p < 0.001 19 (5–24) 0.015 The decrease in PWB and FWB was expected given the rigors of an ablative allogeneic transplant, but the significant rise in EWB was surprising. This may reflect a sense of accomplishment, relief, and optimism among patients concerning their underlying diagnosis and treatment. Twenty-three patients were available to complete the survey tool 12 months after transplant. This was a favorable cohort of patients with continued remissions. Fifty-two percent of these 23 patients, however, did have some degree of chronic graft-versus-host disease. The PWB and SWB scores returned to baseline, and the enhanced EWB scores persisted. Thus, the negative impact of the BMT on PWB and SWB was self-limited. The underlying mechanisms of the sustained EWB improvement one year post-transplant may reflect the fact that these patients were doing well clinically. Further analysis of the early rise in emotional well-being after ablative allogeneic BMT would be of interest.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 19-19
Author(s):  
Daniel Kaplan ◽  
Barbara Silverstone ◽  
Keith Chan ◽  
Amanda Spishak-Thomas

Abstract Social services for older adults are instrumental in addressing vulnerabilities associated with aging. Yet, practitioners report needing expanded geriatric knowledge and enhanced supervision. Agency-based supervision is essential to skilled practice and staff retention, directly impacting the quality of services delivered by the teams they support. The Supervisory Leaders in Aging (SLA) program of the National Association of Social Workers (NASW) was designed to strengthen supervision of the social service workforce. The SLA program, adopted in four states (IL, FL, MD, and NY), trained 134 MSW supervisors who support 1,200 social service staff, aimed at enhancing the well-being of 264,000 clients annually. This paper reports newly available final outcomes data from the 3-year implementation study of SLA. Trainees self-rated use of relevant supervisory best-practices was measured with novel 30-item instrument which captured frequency in use of supervisory best practices. The measure was administered prior to the first session and at three and twelve months after the final session. Comparisons of ratings across time periods demonstrate a range of positive and significant increases at the end of program workshops (0.12–0.56; mean of 0.30 points) and after one year (0.18–0.53; mean of 0.34 points). Supervisory best practices were maintained by those who already engaged in these behaviors, and participants who previously underutilized best practices adopted and maintained these behaviors as a result of the workshops. Implications of this tested model for enhancing workforce capacity will be discussed, including variation of impacts by supervisor characteristics and retention of learning gains over time.


Healthcare ◽  
2021 ◽  
Vol 9 (8) ◽  
pp. 943
Author(s):  
Laia Riera-Negre ◽  
Berta Paz-Lourido ◽  
Francisca Negre ◽  
María Rosa Rosselló ◽  
Sebastià Verger

The COVID-19 pandemic caused disruptions in schooling and the closure of schools worldwide, how this has affected children’s and youth’s health and wellbeing is a current area of research. However, those who suffer a chronic or temporary disease may be attending hospital classrooms, and this scenario has received little attention in comparison to regular schools. The objective of this exploratory quantitative study focuses on exploring the quality of life and emotional well-being of students attending hospital classrooms. For this purpose, four Chilean hospital classrooms from different regions of the country were randomly selected. A total number of 248 students participated in the survey, each of whom filled out two online questionnaires. The findings show similar scores in children with mental illness and those with other health conditions. In comparison with one year before, students rate their general health as the same or somewhat better now, as well as manifesting an optimistic view of the future regarding the pandemic.


2012 ◽  
Vol 3 (4) ◽  
Author(s):  
Thomas L. Lenz ◽  
Nicole D. Gillespie ◽  
Maryann Z. Skrabal ◽  
Michele A. Faulkner ◽  
Jessica J. Skradski ◽  
...  

Health related quality of life (HRQOL) and self-perceived well-being have been shown to be associated with lower healthcare utilization and costs in people with chronic diseases. A pharmacist-run employee health program started in 2008 sought to improve HRQOL through the use of individualized lifestyle behavior programming, medication therapy management, and care coordination activities. Following one year of participation in the program, employee participant's self-reported general health rating significantly improved compared with their baseline rating (p < 0.001). Participants also reported a significantly lower number of days within a month when they did not feel physically and/or mentally well at baseline vs. one-year, respectively (10.3 days vs. 6.0 days, p < 0.01). Pharmacists can positively impact self-reported HRQOL when working in an employee health setting.   Type: Original Research


Author(s):  
Georgy T. Aivazov ◽  
Anna V. Fomina

Problems on the quality of life of patients with diseases of the dentoalveolar apparatus are focused on medical and social aspects. Quality of life studies allow learning not only of the well-being of the patients but also of the disadvantages of various medical interventions in the field of dentistry. Depending on the scope of application, the concept of the quality of life can combine different categories and even systems. Dentistry occupies a leading position because of the scale of morbidities, so there is a close relationship between violations in the functions of the dental apparatus and functions of all body systems. The concept of the quality of life related to oral health is quite vague, which has led to the emergence of various definitions of quality of life related to oral health. Studies of the quality of life in dentistry are carried our using specialized questionnaires in connection with periodontal diseases and adentia, and authors note a close relationship between the absence of teeth and low quality of life. This article considers and analyzes the issue of the relevance of the quality of life associated with the incidence of oral diseases using various questionnaires, including both medical and social issues.


2020 ◽  
Author(s):  
Cathrine Skov Schacksen ◽  
Anne-Kirstine Dyrvig ◽  
Nanna Celina Henneberg ◽  
Josefine Dam Gade ◽  
Helle Spindler ◽  
...  

BACKGROUND More than 37 million people throughout the world are diagnosed with heart failure that is a growing burden on the health sector. Cardiac rehabilitation aims to improve patients’ recovery, functional capacity, psychosocial well-being, and health-related quality of life. However, cardiac rehabilitation programs have poor compliance and adherence. Telerehabilitation may be a solution to overcome some of these challenges to cardiac rehabilitation and making it more individualized. As part of the Future Patient Telerehabilitation program, a digital toolbox with the aim of enabling HF patients to monitor and evaluate their own current status has been developed and tested via data from a questionnaire (patient reported outcomes) that the patient has answered every other week (patient -reported outcomes) for one year. OBJECTIVE The aim of this sub-study is to evaluate the changes in quality of life and well-being for heart failure patients participating in the FPT Program over the course of one year. METHODS In total, 140 patients were enrolled in the Future Patient Telerehabilitation program and randomized into either the telerehabilitation group (n=70) or the control group (n=70). The patients in the telerehabilitation group answered patient reported outcomes that consisted of three components: Questions regarding the patients’ sleep patterns using the Spiegel Sleep Questionnaire. Measurements of physical limitations, symptoms, self-efficacy, social interaction and quality of life were assessed using the Kansas City Cardiomyopathy Questionnaire (KCCQ). In addition, five additional questions regarding psychological well-being were developed by the research group. Of the 70 patients in the TR group, 56 answered the PRO questionnaire and completed the program, and it is these 56 patients who constitute the population for this study. RESULTS The changes in scores during one year of the study were examined using one-sample Wilcoxon signed-rank tests with a hypothesized median being 0. There were statistically significant differences in the scores in most of the slopes and intersections of the scores from the dimensions from the KCCQ and in the slopes of the patients’ overall well-being (p < 0.05). Only one dimension, the symptom stability, showed a decrease in scores over a one-year period. CONCLUSIONS The overall well-being of heart failure patients increased during one year of participating in a telerehabilitation program. There was a statistically significant increase in clinical and social well-being and quality of life during the one-year intervention period. The increase in the scores over time may indicate that the patients became more aware of their own symptoms and became better equipped to cope with disease in their everyday lives. These results suggest that patient-reported-outcome questionnaires may be used as a tool for patients in a telerehabilitation program that can both monitor and guide the patients in mastering their own symptoms CLINICALTRIAL ClinicalTrials.gov NCT03388918; https://clinicaltrials.gov/ct2/show/NCT03388918


2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e17006-e17006
Author(s):  
Naotaka Nishiyama ◽  
Hiroshi Kitamura ◽  
Shiro Hinotsu ◽  
Taiji Tsukamoto ◽  
Taro Shibata ◽  
...  

e17006 Background: Although neoadjuvant chemotherapy (NAC) provides survival benefits in muscle-invasive bladder cancer (MIBC), the impact of NAC on health-related quality of life (HRQoL) has not been investigated by a randomized trial. The purpose of this study is to compare HRQoL in patients with MIBC who received NAC followed by radical cystectomy (RC) or RC alone based on patient-reported outcome data. Methods: Patients were randomized to receive 2 cycles of neoadjuvant methotrexate, doxorubicin, vinblastine, and cisplatin (MVAC) followed by RC or RC alone. HRQoL was measured using the Functional Assessment of Cancer Therapy – Bladder (FACT-BL, version 4) questionnaire before the protocol treatments, after NAC, after RC, and one year after registration. Results: A total of 99 patients were analyzed. No statistically significant differences in postoperative HRQoL were found between the arms. In the NAC arm, the scores after NAC were significantly lower than the baseline scores in physical well-being, functional well-being, FACT-General total, weight loss, diarrhea, appetite, body appearance, embarrassment by ostomy appliance, and total FACT-BL. However, there was no difference in scores for these domains, except for embarrassment by ostomy appliance, between the two arms after RC and one year after registration. Conclusions: Although HRQoL declined during NAC, no negative effect of NAC on HRQoL was apparent after RC. These data support the view that NAC can be considered as a standard of care for patients with MIBC regarding HRQoL. Clinical trial information: C000000093.


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