Background: About 70% of Japanese children with severe motor and intellectual disabilities (SMID) live at home, and the number is increasing. Family members have an enormous burden of daily physical care for these chi...Background: About 70% of Japanese children with severe motor and intellectual disabilities (SMID) live at home, and the number is increasing. Family members have an enormous burden of daily physical care for these children. A top priority is to understand quality of life (QoL), family function, and family empowerment to effectively support these families. We aimed to assess current living situations of families with a SMID child, and to reveal the relationships between QoL, family function, and family empowerment. Methods: Sixty-five family members from 34 families with a SMID child participated in this study. We assessed 5 parameters using the Japanese versions of the following instruments: World Health Organization Quality of Life 26 (WHOQOL26), Kinder Lebensqualitats Fragebogen (KINDL), Family Assessment Device (FAD), Family Adaptability and Cohesion Evaluation Scale KG-4 (FACESKG-4), and Family Empowerment Scale (FES). Correlation and multiple regression analyses were conducted;QoL score was the objective variable. Results: Participants included 54 parents (34 mothers, 20 fathers) and 11 siblings. The mean age of SMID children was 10.4 ± 5.03 years. Twenty-two children needed multiple types of medical care. The mean age of parents and siblings was 41.5 ± 6.16 years and 15.5 ± 2.35 years, respectively. The mean QoL score (3.28 ± 0.5) was similar to the Japanese average. The mean KINDL score (77.2 ± 12.1) was higher than those of previous studies. The mean FAD score was 1.97 ± 0.32. For FACEKG-4, the score of adaptability was correlated with WHOQOL score (r = 0.459, p < 0.05). The mean score of FES was 113.6 ± 14. As the result of multiple regression analysis, lower family FAD scores ([sb] = ?0.61, p < 0.01) indicated higher family function and greater age of participants (sb = 0.495, p < 0.01) was correlated with higher WHOQOL scores (F = 15.208, p < 0.01). Conclusions: Our results indicated that the individual QoL depended on the age of participants (equals the years of experience caring for a SMID child) and the recognition of family function as a whole. Thus, to improve family members’ QoL, we should focus on individuals and also approach the family as a whole.展开更多
TimeslipsTM is a group storytelling program that encourages creative expression among dementia patients without the pressure to recall the past. Analysis of the literature was conducted to determine the nine most rele...TimeslipsTM is a group storytelling program that encourages creative expression among dementia patients without the pressure to recall the past. Analysis of the literature was conducted to determine the nine most relevant agitation and anxiety scales most appropriate for use with Timeslips in nursing home patients with dementia, who experience agitation and anxiety. Qualitative assessment of the nine scales was conducted to identify six criteria to determine the most pertinent characteristics for implementation of Timeslips within this patient population: 1) validity/reliability, 2) observation period, 3) training required, 4) time to administer, 5) most appropriate administrator and 6) accessibility/cost. Utilizing these six criteria, quantitative assessment was conducted using the Analytical Hierarchical Process (AHP) to identify that the Overt Agitation Severity Scale (OASS) was optimal. IRB approvals have been attained to investigate use of the OASS with Timeslips in the nursing home setting for patients with dementia, who experience agitation and anxiety.展开更多
文摘Background: About 70% of Japanese children with severe motor and intellectual disabilities (SMID) live at home, and the number is increasing. Family members have an enormous burden of daily physical care for these children. A top priority is to understand quality of life (QoL), family function, and family empowerment to effectively support these families. We aimed to assess current living situations of families with a SMID child, and to reveal the relationships between QoL, family function, and family empowerment. Methods: Sixty-five family members from 34 families with a SMID child participated in this study. We assessed 5 parameters using the Japanese versions of the following instruments: World Health Organization Quality of Life 26 (WHOQOL26), Kinder Lebensqualitats Fragebogen (KINDL), Family Assessment Device (FAD), Family Adaptability and Cohesion Evaluation Scale KG-4 (FACESKG-4), and Family Empowerment Scale (FES). Correlation and multiple regression analyses were conducted;QoL score was the objective variable. Results: Participants included 54 parents (34 mothers, 20 fathers) and 11 siblings. The mean age of SMID children was 10.4 ± 5.03 years. Twenty-two children needed multiple types of medical care. The mean age of parents and siblings was 41.5 ± 6.16 years and 15.5 ± 2.35 years, respectively. The mean QoL score (3.28 ± 0.5) was similar to the Japanese average. The mean KINDL score (77.2 ± 12.1) was higher than those of previous studies. The mean FAD score was 1.97 ± 0.32. For FACEKG-4, the score of adaptability was correlated with WHOQOL score (r = 0.459, p < 0.05). The mean score of FES was 113.6 ± 14. As the result of multiple regression analysis, lower family FAD scores ([sb] = ?0.61, p < 0.01) indicated higher family function and greater age of participants (sb = 0.495, p < 0.01) was correlated with higher WHOQOL scores (F = 15.208, p < 0.01). Conclusions: Our results indicated that the individual QoL depended on the age of participants (equals the years of experience caring for a SMID child) and the recognition of family function as a whole. Thus, to improve family members’ QoL, we should focus on individuals and also approach the family as a whole.
文摘TimeslipsTM is a group storytelling program that encourages creative expression among dementia patients without the pressure to recall the past. Analysis of the literature was conducted to determine the nine most relevant agitation and anxiety scales most appropriate for use with Timeslips in nursing home patients with dementia, who experience agitation and anxiety. Qualitative assessment of the nine scales was conducted to identify six criteria to determine the most pertinent characteristics for implementation of Timeslips within this patient population: 1) validity/reliability, 2) observation period, 3) training required, 4) time to administer, 5) most appropriate administrator and 6) accessibility/cost. Utilizing these six criteria, quantitative assessment was conducted using the Analytical Hierarchical Process (AHP) to identify that the Overt Agitation Severity Scale (OASS) was optimal. IRB approvals have been attained to investigate use of the OASS with Timeslips in the nursing home setting for patients with dementia, who experience agitation and anxiety.
