Transitioning to independent living: perspectives of young adults with intellectual disabilities and multiple complex needs, families and specialist services

Purpose Knowledge about transition from parental care to independent living is very sparse. The purpose of this study was to examine how young adults with intellectual disabilities and multiple complex needs and their families experienced the transition to independent living in residential settings. Design/methodology/approach Participants included 27 service users with multiple complex needs, 27 family members and 27 professionals from specialist mental health or habilitation services. Background data covered demographics, level of intellectual disabilities, additional diagnoses and residential and specialist services history. Qualitative data were collected using a study-specific questionnaire. Data were analysed using qualitative content analysis. Findings Service users had little or no influence over major decisions. Transition was challenging for some; however, most service users reported satisfaction. More than half of the families experienced being excluded from decision-making and not being listened to by professionals. Research limitations/implications The limitations relate to the sample, the questionnaire and recruitment. The number of participating service users was small. A further limitation is data collection, as we used questionnaires only. No observation or in-depth interviews were conducted. In addition, three service users did not complete the questionnaire. There may have been selection bias, as service users were invited to participate by clinicians with whom they were already familiar. A final limitation is recall bias. As the transition process often took place over several years, both service users and their families may not have been able to recall their experiences accurately. Practical implications Service users and their families require greater involvement in decision-making. Successful transitions depend on effective planning and close collaboration between service users, families, municipalities and specialist health services. Specialist services should ensure that staff are adequately prepared to meet multiple complex needs. Originality/value The findings of this study contribute to a more profound knowledge of service user experiences of transition from parental care to more independent living. In previous research, service users with intellectual disabilities and multiple complex needs including mental health disorders are very rarely asked about their experiences.