scholarly journals How to improve the transition process to independent living for adolescents with profound intellectual disabilities? Experiences from parents and employees.

2020 ◽  
Author(s):  
Eirik Roos ◽  
Erik Sondenaa
Keyword(s):  
Young Adults ◽  
Intellectual Disability ◽  
Independent Living ◽  
Early Stage ◽  
Transition Process ◽  
Main Question ◽  
Burden Of Care ◽  
Subjective Burden ◽  
The Family ◽  
Family Home

Abstract BackgroundThe transition process from the family home to independent living for young adults with profound intellectual disability (PID) becomes delayed. Those families face challenges that exceed those of typical families such as higher objective and subjective burden, more frequent psychological distress and lower social support. The aim of this study was to explore the collaboration process between parents and employees and identify factors that improve the transition with less burden.MethodsA descriptive qualitative study was undertaken with 18 persons (9 parents and 9 employees) interviewed individually and in groups. In accordance with the municipality`s guidelines, families with profound intellectual disability (PID) child should apply for housing, when the child turns 16. The purpose is to ensure interdisciplinary collaboration, information flow and coordinated services according to family’s needs. The main question in the interviews was ‘What was your experience with cooperation in the transition process, and what would you do to improve this process?’ The interviews were analysed with a thematic approach using systematic text condensation.ResultsThe parents experienced a lack of general information about the ‘housing waiting list’, level of services, and the plan for time of moving from the family home, and how to choose where and whom to live with. Parents described that they had an unsustainable burden of care during the waiting period, and a family crisis caused the allocation of an apartment in a group house. Employees shared challenges to meet families’ wishes, as there were too few group homes. They experienced good collaboration with families and said they offered respite care, due to reduce parents’ burden of care. Employees experienced that PID children developed skills, mastery and degrees of independence after completing a residency at the Folk High School.ConclusionsTo improve the transition process from family home to independent living for young adults with PID, the informants highlighted some factors to reduce the burden of care to families: 1) Systematic follow-up program for families to observe their needs at an early stage 2) More available group houses 3) Information about the housing-priorities of the services and 4) Educational preparing programs to families.

scholarly journals Improving the transition process to independent living for adolescents with profound intellectual disabilities. Experiences of parents and employees.

2020 ◽  
Author(s):  
Eirik Roos ◽  
Erik Sondenaa
Keyword(s):  
Young Adults ◽  
Independent Living ◽  
Early Stage ◽  
Transition Process ◽  
General Information ◽  
Main Question ◽  
Burden Of Care ◽  
Subjective Burden ◽  
The Family ◽  
Family Home

Abstract Background The transition process from the family home to independent living for young adults with profound intellectual disability (PID) becomes delayed. Those families face challenges that exceed those of typical families such as higher objective and subjective burden, more frequent psychological distress and lower social support. The aim of this study was to explore the collaboration process between parents and employees and identify factors that improve the transition with less burden. Methods A descriptive qualitative study was undertaken with 18 persons (9 parents and 9 employees) interviewed individually and in groups. In accordance with the municipality`s guidelines, families with a child with PID should apply for housing, when the child turns 16. The purpose is to ensure interdisciplinary collaboration, information flow and coordinated services according to family’s needs. The main question in the interviews was ‘What was your experience with cooperation in the transition process, and what would you do to improve this process?’ The interviews were analysed with a thematic approach using systematic text condensation.Results The parents experienced a lack of general information about the ‘housing waiting list’, level of services, and the plan for time of moving from the family home, and how to choose where and whom to live with. Parents described an unsustainable burden of care during the waiting period, and a family crisis caused the allocation of an apartment in a group house. Employees shared challenges to meet families’ wishes, as there were too few group homes. They experienced good collaboration with families and said they offered respite care, due to reduce parents’ burden of care. Employees experienced that PID adolescents developed skills, mastery and degrees of independence after completing a residency at the Folk High School. Conclusions To improve the transition process from family home to independent living for young adults with PID, the informants highlighted some factors to reduce the burden of care on families: 1) Systematic follow-up program for families to observe their needs at an early stage; 2) More available group houses; 3) Information about the housing priorities of the services and; 4) Educational preparation programs for families.

scholarly journals Improving the transition process to independent living for adolescents with profound intellectual disabilities. Experiences of parents and employees

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Eirik Roos ◽  
Erik Søndenaa
Keyword(s):  
Young Adults ◽  
Independent Living ◽  
Early Stage ◽  
Transition Process ◽  
General Information ◽  
Main Question ◽  
Burden Of Care ◽  
Subjective Burden ◽  
The Family ◽  
Family Home

Abstract Background The transition process from the family home to independent living for young adults with profound intellectual disability (PID) becomes delayed. Those families face challenges that exceed those of typical families such as higher objective and subjective burden, more frequent psychological distress and lower social support. The aim of this study was to explore the collaboration process between parents and employees and identify factors that improve the transition with less burden. Methods A descriptive qualitative study was undertaken with 18 persons (9 parents and 9 employees) interviewed individually and in groups. In accordance with the municipality’s guidelines, families with a child with PID should apply for housing, when the child turns 16. The purpose is to ensure interdisciplinary collaboration, information flow and coordinated services according to family’s needs. The main question in the interviews was ‘What was your experience with cooperation in the transition process, and what would you do to improve this process?’ The interviews were analysed with a thematic approach using systematic text condensation. Results The parents experienced a lack of general information about the ‘housing waiting list’, level of services, and the plan for time of moving from the family home, and how to choose where and whom to live with. Parents described an unsustainable burden of care during the waiting period, and a family crisis caused the allocation of an apartment in a group house. Employees shared challenges to meet families’ wishes, as there were too few group homes. They experienced good collaboration with families and said they offered respite care, due to reduce parents’ burden of care. Employees experienced that PID adolescents developed skills, mastery and degrees of independence after completing a residency at the Folk High School. Conclusions To improve the transition process from family home to independent living for young adults with PID, the informants highlighted some factors to reduce the burden of care on families: 1) Systematic follow-up program for families to observe their needs at an early stage; 2) More available group houses; 3) Information about the housing priorities of the services and; 4) Educational preparation programs for families.

scholarly journals Improving the transition process to independent living for adolescents with profound intellectual disabilities. Experiences of parents and employees.

2020 ◽  
Author(s):  
Eirik Roos ◽  
Erik Sondenaa
Keyword(s):  
Young Adults ◽  
Independent Living ◽  
Early Stage ◽  
Transition Process ◽  
General Information ◽  
Main Question ◽  
Burden Of Care ◽  
Subjective Burden ◽  
The Family ◽  
Family Home

Abstract Background The transition process from the family home to independent living for young adults with profound intellectual disability (PID) becomes delayed. Those families face challenges that exceed those of typical families such as higher objective and subjective burden, more frequent psychological distress and lower social support. The aim of this study was to explore the collaboration process between parents and employees and identify factors that improve the transition with less burden. Methods A descriptive qualitative study was undertaken with 18 persons (9 parents and 9 employees) interviewed individually and in groups. In accordance with the municipality`s guidelines, families with a child with PID should apply for housing, when the child turns 16. The purpose is to ensure interdisciplinary collaboration, information flow and coordinated services according to family’s needs. The main question in the interviews was ‘What was your experience with cooperation in the transition process, and what would you do to improve this process?’ The interviews were analysed with a thematic approach using systematic text-condensation. Results The parents experienced a lack of general information about the ‘housing waiting list’, level of services, and the plan for time of moving from the family home, and how to choose where and whom to live with. Parents described that they had an unsustainable burden of care during the waiting period, and a family crisis caused the allocation of an apartment in a group house. Employees shared challenges to meet families’ wishes, as there were too few group homes. They experienced good collaboration with families and said they offered respite care, due to reduce parents’ burden of care. Employees experienced that PID children developed skills, mastery and degrees of independence after completing a residency at the Folk High School. Conclusions To improve the transition process from family home to independent living for young adults with PID, the informants highlighted some factors to reduce the burden of care on families: 1) Systematic follow-up program for families to observe their needs at an early stage; 2) More available group houses; 3) Information about the housing priorities of the services and; 4) Educational preparation programs for families.

scholarly journals Parents living with profound intellectual disabilities – how to improve the transition process from family home to independent living. A qualitative study with parents and employees

2020 ◽  
Author(s):  
Eirik Roos ◽  
Erik Sondenaa
Keyword(s):  
Intellectual Disability ◽  
Qualitative Study ◽  
Independent Living ◽  
Transition Process ◽  
Main Question ◽  
Burden Of Care ◽  
Subjective Burden ◽  
The Family ◽  
Family Home ◽  
Collaboration Process

Abstract Background The transition process from the family home to independent living for young adults with intellectual disability (ID) becomes delayed. Those families face challenges that exceed those of typical families such as higher objective and subjective burden, more frequent psychological distress and lower social support. The aim of this study was to explore the collaboration process between parents and employees and identify factors that improve the transition with less burden. Methods A descriptive qualitative study was undertaken with 18 persons (9 parents and 9 employees) interviewed individually and in groups. In accordance with the municipality`s guidelines, families with profound intellectual disability (PID) child should apply for housing, when the child turns 16. The purpose is to ensure interdisciplinary collaboration, information flow and coordinated services according to family’s needs. The main question in the interviews was ‘What was your experience with cooperation in the transition process, and what would you do to improve this process?’ The interviews were analysed with a thematic approach using systematic text condensation. Results The parents experienced a lack of general information about the ‘housing waiting list’, level of services, the plan for time of moving from the family home, and how to choose where and whom to live with. Parents described that they had an unsustainable burden of care during the waiting period, and a family crisis caused the allocation of an apartment in a group house. Employees shared challenges to meet families’ wishes, as there were too few group homes. They experienced good cooperation with families and said they offered respite care, due to reduce parents’ burden of care. Employees experienced that PID children developed skills, mastery and degrees of independence after completing a residency at the Folk High School. Conclusions To improve the collaboration process to reduce the burden of care to families, the informants highlighted the following imported factors:

The Influence of Residence on Young Adult Attitudes toward Healthy Eating

2008 ◽  
Vol 14 (2) ◽  
pp. 33-49 ◽  
Author(s):  
Tegan Piggford ◽  
Maria Raciti ◽  
Debra Harker ◽  
Michael Harker
Keyword(s):  
Young Adults ◽  
Healthy Eating ◽  
Living Arrangements ◽  
Food Choice ◽  
Independent Living ◽  
Intervention Strategies ◽  
The Family ◽  
Unexplored Area ◽  
Family Home ◽  
Self Administered Questionnaire

Like other Western countries, Australia too reports record numbers of overweight and obese individuals with young Australian adults in a particularly high-risk position. It is suspected that the transition from dependent living in the family home to independent living during young adulthood influences food choice. As such, this study sought to investigate if attitudes toward healthy eating varied by the place of residence (dependent or independent) of these young adults. Using a self-administered questionnaire, quantitative data from 310 Australians between the ages of 18 to 24 years found that young adults who lived independently displayed a significantly more positive attitude toward healthy eating than those who remained in the family home. Furthermore, we found that a significant, positive relationship between attitude toward healthy eating and the number of recommended serves consumed in both independent and dependent living arrangements. Being an unexplored area, these findings are novel and provide valuable insights for the implementation of an inducement process for planned social change as well as informing the education and motivation elements of intervention strategies.

A mixed-methods examination of the gap between intelligence and adaptive functioning in autistic young adults without intellectual disability

Autism ◽  
2021 ◽  
pp. 136236132110183
Author(s):  
Nicole L Matthews ◽  
Kyla Christenson ◽  
Sarah Kiefer ◽  
Christopher J Smith
Keyword(s):  
Young Adults ◽  
Intellectual Disability ◽  
Statistical Analysis ◽  
Qualitative Analysis ◽  
Independent Living ◽  
Adaptive Functioning ◽  
Parent Report ◽  
Intellectual Ability ◽  
Standardized Assessments ◽  
Service Needs

This study examined adaptive functioning, strategies used to develop adaptive functioning skills, and areas where additional services could benefit autistic young adults without intellectual disability. Participants were 21 autistic young adults and at least one parent of each young adult. Quantitative analyses replicated previous reports of an adaptive functioning disadvantage relative to intellectual functioning such that adaptive functioning standard scores were significantly lower than intelligence quotient scores. Qualitative analysis utilized grounded theory methodology and yielded a conceptual model describing the nature and development of adaptive functioning in this demographic. Together, findings provide a more nuanced understanding of the gap between intellectual and adaptive functioning in autistic young adults without intellectual disability. Lay abstract Adaptive functioning describes the age-appropriate skills necessary for independent living. Research suggests that autistic children, adolescents, and adults who do not have an intellectual disability demonstrate adaptive functioning challenges relative to their intellectual ability. Thus, even though many of these individuals have the intellectual capacity to excel in mainstream educational and vocational settings, their adaptive functioning challenges may serve as an obstacle to independence. The research on adaptive functioning in autistic adults is focused on statistical analysis of standardized assessments (e.g. parent-report on multiple choice questionnaires). Qualitative research that examines the narratives of young adults and their parents is needed to better understand adaptive functioning in young adults and their resulting service needs. This study combined statistical analysis of standardized assessments with qualitative analysis of interview responses from autistic young adults without intellectual disability and their parents. Findings replicated previous reports of adaptive functioning challenges and identified influences on adaptive functioning development, consequences of independence, and service needs. Taken together, findings indicate the need for interventions and services that facilitate adaptive functioning development in autistic adolescents and young adults and provide insight into potential intervention targets and strategies.

Individual and Family Correlates of Community Living Options Among Adults With Intellectual and Developmental Disabilities

Inclusion ◽  
2017 ◽  
Vol 5 (4) ◽  
pp. 279-292 ◽  
Author(s):  
Meghan M. Burke ◽  
Chung eun Lee ◽  
Moon Y. Chung ◽  
Kristina Rios ◽  
Catherine K. Arnold ◽  
...  
Keyword(s):  
Developmental Disabilities ◽  
Independent Living ◽  
Group Homes ◽  
Community Living ◽  
Intellectual And Developmental Disabilities ◽  
Functional Abilities ◽  
Future Planning ◽  
Adults With Disabilities ◽  
The Family ◽  
Family Home

Abstract With recent policy changes and case-law decisions, there are more opportunities for adults with intellectual and developmental disabilities (IDD) to live independently in inclusive settings. It is necessary to identify malleable correlates of community living options to develop interventions to increase inclusive, independent living. To this end, 546 parents and siblings of adults with IDD responded to a national survey. According to parent and sibling report, adults with IDD were more likely to live outside of the family home when the family engaged in future planning, the individual had more informal supports and more functional abilities and had parents with fewer caregiving abilities. Among the 187 adults with IDD who lived outside of the family home, individuals with more problem behaviors and fewer functional abilities were more likely to live in larger group homes (versus independently with or without supports). Further, when the family engaged in more future planning activities, adults with disabilities were more likely to live in a group home (versus independently). When parents had fewer caregiving abilities, adults with disabilities were more likely to live in bigger group homes (versus independently). Implications for policymakers, practitioners, and research are discussed.

scholarly journals Treatment outcome indicators of schizophrenia according to Brazilian family caregivers and outpatients

2019 ◽  
Vol 9 (9) ◽  
pp. 73
Author(s):  
Marcos Hirata Soares ◽  
Adriano Luiz da Costa Farinasso ◽  
Fernanda Pâmela Machado ◽  
Layla Karina Ferrari Ramos ◽  
Cristiane De Souza Gonçalves
Keyword(s):  
Mental Health ◽  
Treatment Outcome ◽  
Independent Living ◽  
Care Center ◽  
Mental Health Policy ◽  
Family Members ◽  
Psychosocial Care ◽  
Fundamental Aspect ◽  
Subjective Burden ◽  
The Family

Background and objective: The need to measure treatment outcomes in mental health services from the perspective of users and family members has been highlighted in the literature as a fundamental aspect to improve the care provided. The objective of this study was to measure the treatment outcome provided by a Brazilian Psychosocial Care Center from the perspective of outpatients and their family members.Methods: A correlational study was performed with 84 outpatients and 40 family members, between 2015 and 2016, interviewing them using the Satisfaction (SATIS-BR), Perception of Change (PCS), Independent Living Skills (ILSS) and Family Burden (FBIS-BR) scales.Results: There was a high index of satisfaction with the mental health service, with a mean of 4.23 for the users interviewed and 4.36 for the family members. The perception of change presented a mean of 2.58 for the patients and 2.19 for the family members. The independent living ability presented a mean of 2.52.Conclusions: The high indices of satisfaction suggest successes, as well as points to be improved in the mental health policy implemented in the municipality. However, reintegration into the labor market was presented as an aspect with a need for investments through health and labor policies, since it was related to the subjective burden.

Care-giving dynamics and futures planning among ageing parents of adult offspring with intellectual disability

2018 ◽  
Vol 39 (7) ◽  
pp. 1512-1527 ◽  
Author(s):  
RUTH WALKER ◽  
CLAIRE HUTCHINSON
Keyword(s):  
Intellectual Disability ◽  
Adult Children ◽  
Service Providers ◽  
Theoretical Perspective ◽  
Older Parents ◽  
Supported Accommodation ◽  
Care Giving ◽  
The Family ◽  
The Future ◽  
Family Home

ABSTRACTThe number of older parents ageing in tandem with their adult children with intellectual disability (ID) is increasing. This unique situation calls for greater research that investigates how older parents experience this extended care-giving role, including the extent to which they are engaging in futures planning. Participants were recruited via disability service providers in South Australia. Using the theoretical perspective of hermeneutic phenomenology to understand lived experiences, semi-structured in-depth interviews were carried out with older parents (N = 17, mean age 70 years). Six offspring were living in the family home while the remainder were in supported accommodation. Main themes to emerge from the data were: (a) perpetual parenting, (b) costs and rewards and (c) planning to plan. Parents were providing care across a range of areas, regardless of whether their offspring lived at home or in supported accommodation. While aware of the need to plan for the future, most did not have a firm plan in place. Parents are providing a high level of support to their adult children with ID regardless of whether they live in supported accommodation or the family home. While some have started to think about future care arrangements, most appear unclear over what the future holds.

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