Assessment of Quality of Life, Family Function and Family Empowerment for Families Who Provide Home Care for a Child with Severe Motor and Intellectual Disabilities in Japan

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.

Family empowerment and quality of life of parents raising children with Developmental Disabilities in 78 Japanese families

Objectives: The families of these children experience distress both at the time of diagnosis and afterward.A top priority is to understand family empowerment,family function,and family members' quality of life (QoL) and to effectively support these families in Japan.The objective of this study was to assess the actual conditions of families living with children having DDs and to explore the factors associated with family empowerment and parents' QoL.Methods: We surveyed ninety-three parents (78 mothers,15 fathers) from 78 families which lived with children with DDs in the capital region of Japan.We assessed two main outcomes using the Japanese versions of the following instruments: Family Empowerment Scale (FES),World Health Organization Quality of Life 26 (WHOQOL26),and other six outcomes.Correlation and multiple regression analyses were conducted.Results: No medication,cooperation with child rearing,assistance from a developmental support center,solved problems related to child rearing,and higher scores in Problem Solving contributed to higher FES scores.Higher WHOQOL26 scores were related to being a full-time housewife,higher self-esteem,no developmental support,a broad emotional support network,higher scores in Problem Solving and Role Function,and lower scores in Affective Reaction and General Function.Conclusions: We revealed that family empowerment and QoL of parents rearing children with DDs in Japan were affected by various subscales of family function and other family attributes.Effective interventions for improving family empowerment and QoL should be researched in the future.

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.

Empirical Study on the Empowerment of Families Raising Children with Severe Motor and Intellectual Disabilities in Japan: The Association with Positive Feelings towards Child Rearing

Background: “Children with severe motor and intellectual disabilities” refers to children with markedly limited activity due to severe overlapping of physical and intellectual disabilities. The physical and mental burden placed on families raising severely disabled children, particularly the primary caregivers, is great in home settings. For families to effectively utilize services and over-come child rearing problems, the families themselves need the “strength” to cooperate with others for the purpose of raising a severely disabled child. The ultimate goal of family support is to enable such families to achieve satisfaction and self-growth in child rearing. Methods: We used a questionnaire to survey 75 primary caregivers to empirically elucidate the empowerment and positive feelings towards child rearing of families raising children with severe motor and intellectual disabilities and the related factors. The t-test and Spearman’s rank correlation coefficient were used to examine the association with bivariates. A multiple regression analysis was conducted for empowerment and positive feelings. Results: Results revealed that life events, livelihood, awareness of social support and the child’s sleep problems were factors related to empowerment. Of these, awareness of social support from outside of the family was found to contribute the most to empowerment. Furthermore, improvement and maintenance of positive feelings towards child rearing reaffirmed the existence of empowerment in addition to reducing negative feelings towards child rearing and ensuring social support. Conclusions: Raising children with severe motor and intellectual disabilities requires specialist knowledge and skills. Support from professionals to empower the entire family is therefore important in order to strengthen positive feelings towards child rearing.

Factors Affecting Japanese HPV-Vaccination: Findings from the Semi-Structured Interviews with Adolescent Girls and Caregivers

The objective of the present study was to qualitatively assess the obstructive and facilitative factors affecting adolescent girls and their caregivers when the adolescent had received or was considering receiving the Human Papilloma Virus (HPV) vaccination. Using these data, we propose recommendations for medical and nursing staff concerned with HPV vaccination. Participants were 20 adolescent girls (aged 10 - 19 years) and their caregivers, who had visited any of the 3 pediatric clinics in the Tokyo metropolitan area during a specified period since HPV vaccination began in Japan. The girls and their caregivers were separately interviewed by 2 child and/or family nursing care specialists with a semi-structured interview. The responses were qualitatively analyzed by 2 specialists, and the obstructive and facilitative factors affecting participants’ decision to receive HPV vaccination were extracted from the responses. Among the 20 sets of participants, 7 adolescents had completed HPV vaccination, 9 were going to receive vaccination, and 4 had not received any vaccination. The obstructive/facilitative factors related to considering or receiving HPV vaccination and actual vaccination were extracted and 4 main categories of factors were identified. Facilitators toward HPV-vaccination of daughters included clear future self-image and visions, fear Cervical Cancer (CC) and desire to escape from CC, having discussion with mothers about HPV-vaccination and CC, and to have a boyfriend. Barriers toward vaccination included the mothers’ reluctance to explain the sexual matters about HPV-vaccination to their daughters and difficulty with find the appropriate clinic or hospital to HPV-vaccination. Relevant factors about vaccination included positive family attitudes toward vaccination, having family system allowing consultation and having a public financial support for vaccination for daughters. Our conceptual model adapted from the Katz, et al. conceptual framework integrated the key barriers and facilitators as factors within each of four domains. These four domains have an important link. Especially, the environmental factors and the structural and sociocultural factors domain affect the individual adolescent and the caregiver factors domain, respectively. The results of present study suggest that medical/nursing activities centered on promoting HPV vaccination in Japan should comprehensively cover CC/vaccination/sex education in an integrated fashion, while schools and public health centers should provide opportunities for caregivers and adolescents to jointly participate in awareness education on HPV vaccination.

Roles and Hopes of Family Members Living with SMID Children in Japan

The number of children with Severe Motor and Intellectual Disabilities (SMID) receiving medical treatment/recovering at home is rising yearly. Although benefits of this care are emphasized, the stress and duties of family members in the household are extremely great, especially because Japan is becoming a society of nuclear families. In this study, we described the lifestyles of nuclear families providing in-home medical care for children with SMID, focusing on family members’ roles. Roles of mothers, fathers, and siblings of children with SMID were summarized from semi-structured inter-views. As a result, for “the roles of each family member living with a child with SMID”, mothers had five roles, fathers seven, and siblings five. For “the hopes of each family member living with a child with SMID”, parents desired the whole family collaboration in care for children with SMID, and as caregivers, parents’ common thoughts included wanting siblings in order to help care for the child with SMID and wanting siblings to treasure their own lives. Siblings wanted their mother to have some time for rest and expected their fathers to have two main roles. They also expected their grandparents and other siblings to fulfill roles.