Effectiveness of a peer group-based online intervention program in empowering families of children with disabilities at home.

Background: The empowerment of families raising children with disabilities (CWD) is crucial in maintaining their health. We developed an evidence-based, family empowerment intervention program focusing on social resource utilization and reducing care burden. Objective: This study aimed to determine the program's effectiveness in promoting family empowerment. Methods: We compared an intervention group that started the online intervention program a week after initial evaluation and a group that received delayed intervention (waitlist-controlled group) at three time points: initial (T1), post-course (T2), and follow-up (T3). The required sample size was 52. Results: There were 60 participants who applied to the program. One participant dropped out due to scheduling issues, and the others were assigned to either the intervention group (n = 29) or the waitlist-controlled group (n = 30). Those who responded to the baseline questionnaire (T1: 26 from the intervention group; 29 from the waitlist-controlled group) comprised the final sample. Among them, 20 members of the intervention group and 20 of the waitlist-controlled group attended all four sessions (completion rates of 77% and 69%, respectively). The attendance rate for sessions 1-4 was 94%, 89%, 81%, and 83%, respectively. The participant numbers in each session ranged from 5 to 18 per month. The baseline outcome score did not differ between the groups. The primary outcome, family empowerment, measured using the family empowerment scale (FES), was significantly higher at T2 for the intervention group than in the waitlist-controlled group and was sustained in the sensitivity analysis. The intervention group's FES, in the family relationships (FA) and relationships with service systems (SS) subdomains, increased significantly, unlike involvement with the community (SP). The intervention group experienced lower care burden and higher self-compassion, especially in the isolation and over-identification items of the self-compassion scale-short form (SCS-SF). The intervention group's FES (total, FA, SS) and SCS-SF (total, common humanity, isolation) changed significantly between T1 and T2, and all, except common humanity, were sustained up to T3; this group's FES (SP) and SCS (negative score, over-identification) changed significantly between T1 and T3. The waitlist-controlled group's FES (total, FA) and SCS (total) changed significantly and were sustained between T2 and T3. Conclusions: The developed intervention program promotes family empowerment in families of CWD. Clinical Trial Registration: This study is registered as a clinical trial in the UMIN Clinical Trials Registry (https://center6.umin.ac.jp/cgi-open-bin/ctr/ctr_view.cgi?recptno=R000050422, UMIN000044172).

Peer group-based online intervention program to empower families raising children with disabilities: protocol for a feasibility study using non-randomized waitlist-controlled trial.

BACKGROUND: Families raising children with disabilities assume risks to their health and lives. Therefore, it is necessary to support these families to improve family empowerment, which is the ability of these families to control their own lives and to promote the collaborative raising of children with disabilities. This is the first online intervention program focusing on the empowerment of families raising children with disabilities who live at home in Japan. METHOD: The program consists of four online peer-based group sessions. Moreover, the families engage in several activities in stages wherein they discover their own issues, find measures to resolve them, and take action, while visualizing interfamily relationships, including social resources, and the status of their family life, with facilitators and other peer members. This study is a non-randomized, waitlist-controlled trial. It compares the results of the intervention group (early group) and the waitlist-controlled group (delayed group). The participants are allocated to the early or delayed group in the order of their applications. The main outcome is family empowerment. Other outcomes are the caregiver burden, self-reported capability to use social resources, self-compassion, and the quality of life (QOL) of primary caregivers. The timeline of the online outcome evaluation is as follows: the initial evaluation (Time 1 [T1]) is conducted before the start of the first early group program, and post-intervention evaluation (Time 2 [T2]) is conducted immediately (within 1 week) after the early group completes all four sessions (4 weeks) of the program. Follow-up evaluation (Time 3 [T3]) is conducted 4 weeks after the post-intervention evaluation. This timing is the same in the delayed group, but the delayed group will attend the program after a 4-week waiting period, compared to the early group. DISCUSSION: The intention is to evaluate whether the provision of the program developed in this study and the evaluation test design are feasible and to verify the efficacy of this program. TRIAL REGISTRATION: The UMIN Clinical Trials Registry (UMIN000044172), registration date: May 19, 2021.

Quality of life and associated factors in siblings of children with severe motor and intellectual disabilities: A cross-sectional study.

This study examined quality of life and its associated factors in siblings of children with severe motor and intellectual disabilities in Japan. The participants were 789 siblings of children with a disability and their primary caregivers. We used the Kinder Lebensqualität Fragebogen questionnaire to assess the quality of life of siblings. The mean age of the siblings was 12.21 ± 3.07 years, and the mean quality of life score was 69.63 ± 12.55 points, which is higher than that of the general population of children of the same age. It was revealed that the following factors contributed to higher quality of life scores: a closer relationship with the child with a disability, younger age, the primary caregiver's lower care burden, later birth order of siblings (i.e., younger siblings), higher family empowerment, and female gender of siblings. The relationship with the child with a disability had the strongest influence on siblings' quality of life. Our study suggests the need for nursing interventions that focus on the whole family to enhance siblings' quality of life.

Family empowerment and associated factors in Japanese families raising a child with severe motor and intellectual disabilities.

OBJECTIVES: Family caregivers raising children with severe motor and intellectual disabilities (SMID) experience the enormous burden of care. The concept of family empowerment is one of the important assessment indexes of family nursing from the perspective of providing comprehensive support for these families. The objective of this study was to identify the factors associated with the empowerment of families raising a child with SMID in Japan. METHODS: We conducted a nationwide questionnaire survey involving 1659 primary caregivers raising a child with SMID through 89 special schools. We assessed the main outcomes using the Family Empowerment Scale (FES). We then conducted a multiple linear regression analysis to reveal the factors associated with family empowerment. RESULTS: In total, 1362 primary caregivers were included in our study. Our results show that factors contributing to high FES scores are higher age of the primary caregiver, higher education, greater recognition of regional support, lower childcare burden, higher utilization of home visit services, higher usage of a childcare institution, higher household income, and stronger family bonding. CONCLUSION: Healthcare professionals should carefully assess the state of family empowerment of the primary caregivers who are younger and those who have low education, low household income, high childcare burden, and fragile bonding with the family. Second, they should encourage such families to use regional support resources for childcare. That is, policy makers should consider ways to promote home visits and institutional services for the care of children with SMID, aiming especially for the provision of well-coordinated care and services.

An investigation of factors related to the use of respite care services for children with severe motor and intellectual disabilities (SMID) living at home in Japan.

Limited time away from the child is cited as the main factor that increases the burden for the primary caregiver of severely disabled children. The aim of this study was to quantitatively elucidate the factors related to the desire to use social services and the actual use of respite care services by the primary caregivers of severely disabled children in Japan. In this study, we investigated the use of respite care services in accordance with the primary caregivers' wishes by examining inhibiting or promoting factors associated with respite care service use only among those who wished to use social services. A total of 169 Japanese mothers participated and answered the questionnaires. We conducted a logistic regression analysis and a multiple regression analysis to investigate the factors related to respite care service use. The most important factors affecting a primary caregiver's desire to use social services were the belief that the child would enjoy using social services and the family's approval of the social service use. The most important factors affecting respite care service use were the family's approval of the use and a large care burden on the primary caregiver. Respite care services should be sought out before the care burden becomes too great to enable the primary caregiver to more easily contribute to the continuation of home care. A background of mother-child separation anxiety disrupted the use of respite care. However, believing that the child enjoys using social services may reduce primary caregivers' psychological resistance to being separated from their child, which is supported by tradition. Thus, it is also important for respite care service providers to provide information about the children to their primary caregivers and families while they are using respite care services.

Changes in Mothers' Psychosocial Perceptions of Technology-dependent Children and Adolescents at Home in Japan: Acknowledgement of Children's Autonomy.

PURPOSE: This research was conducted to reveal Japanese mothers' changing perceptions towards their technology-dependent children in the home care setting. METHODS: Fourteen Japanese mothers participated in semi-structured interviews, which were analyzed using a grounded theory approach. RESULTS: "Degree of preoccupation with the child" emerged as the category representing the mothers' perceptions towards their child. Three categories emerged that represented the progression of maternal perceptions over time: "accepting the child's conditions", "mastering the management of care in various conditions", and "considering social participation for the child". CONCLUSIONS: First, mothers gradually accepted the conditions of their child after his/her disease and disability were known. Second, others managed technology-required care and concurrently considered the social participation of their child through daily care at home. Third, the level of preoccupation with the child was affected by the mothers' management of care and their attitude towards the social participation of their child in home care. In this study, as is widely alleged in historical recognition of Japan, mothers provided daily care almost without help from other family members. Additionally, they thought it natural and good for their children. Above all, especially in Japan, professional support for mothers are necessary so that they can take breaks from care.

How adolescent Japanese girls arrive at human papilloma virus vaccination: A semistructured interview study.

We examined the human papilloma virus (HPV) vaccination process in adolescent Japanese girls, including protective and obstructive factors to develop and practice enlightenment activities and educational interventions for promoting HPV vaccination to adolescent Japanese girls and their families. We conducted semistructured interviews with 20 adolescent Japanese girls who lived in the wider Tokyo area. To analyze the interview data, we adopted the modified grounded-theory approach. We identified three stages in the vaccination process: first encounter with cervical cancer and HPV vaccine, thoughts about vaccination, and adjustment with parents toward vaccination. The girls "knew" their knowledge and information on cervical cancer and the HPV vaccine from experts, parents, and friends, "considered and discussed" HPV vaccination in their own way or with parents, and "arranged" actual vaccination. This process was influenced by the promoting/obstructive factors in each stage. Healthcare providers should understand the experiences and feelings of adolescent girls who were confronted with HPV vaccination in the context of their vaccination process and conduct enlightenment activities to promote vaccination, keeping the promoting and obstructive factors suggested in this study in mind.

Factors associated with skills of health visitors in maternal-infant mental health in Japan.

This study is a formative evaluation of a training seminar for health visitors, who visit mothers to provide them with support in terms of postpartum mental health, and was performed to examine factors that relate to the skills of these health visitors. Subjects were all health visitors (n = 232) from around Japan who participated in a 2-day training seminar. One-hundred and thirty-three valid responses (57.3%) were received and written consent to participate in the research was obtained. Results of statistical analyses indicated that a health visitor's skill at supporting a mother in terms of postpartum mental health had two domains, such as interpersonal health care skills and skill at formulating measures. In addition to the length of experience (p < 0.001), the level of expertise (p < 0.001) and the total score on the Generalized Self-Efficacy Scale (p < 0.1 for interpersonal health care skills) was related to a higher level of the health visitor's skill at supporting mothers in terms of their postpartum mental health. In contrast, having a university degree (p < 0.1) was related to a lower level of the health visitor's interpersonal health care skills. Therefore, a training seminar aimed at promoting the skills of health visitors must provide them with the latest expertise and encourage their self-efficacy by helping them successfully envision supporting mothers in terms of their postpartum mental health. In addition, careful instruction of health visitors with less experience and a university degree is crucial.