A Grounded Theory Study of How Parents Made the Decision about Residential Group Home Placement for Their Adult Child with Intellectual/Developmental Disabilities

TL;DR: Investigation of the phenomenon attempted to identify the presence of shared decision making among clinicians, nurses, the interdisciplinary healthcare team, and parent caregivers in this vulnerable population during the decision-making process and identified Parents Cannot be Caregivers Forever was identified as the core concept/central problem of caregiver readiness.

Abstract: Background: The parent caregivers of a child with an Intellectual Disability/Developmental Disability (ID/DD) face lifelong challenges that may at some point involve the decision about residential group home placement of the adult child. In the course of the child’s lifetime, the parents who have provided care may need to consider a safe alternative. The decision about residential group home placement of the adult child can be the result of numerous factors. Objective: The purpose of this qualitative inquiry was to investigate the phenomenon of how the parent caregivers made the decision for residential group home placement for their adult child with ID/DD. Another purpose was to generate a substantive theory that describes and explains how the parent caregivers of the adult child with ID/DD made the decision for residential group home placement. This phenomenon represents a unique gap in nursing literature and nursing knowledge. Lastly, investigation of the phenomenon attempted to identify the presence of shared decision making among clinicians, nurses, the interdisciplinary healthcare team, and parent caregivers in this vulnerable population during the decision-making process. Method: Using Grounded Theory methodology, the researcher investigated the phenomenon of how parent caregivers made the decision about residential group home placement for their adult child with ID/DD. Sampling was purposive, theoretical maximum variation. Using Grounded Theory, a substantive theory was constructed based on accounts of 15 community-dwelling parent caregivers as participants. Sample size was determined when saturation of the data had been reached and no additional themes emerged. The group of participants included parent caregivers who had already placed their adult child with ID/DD in a residential group home (n = 14). In addition, so the researcher could more fully understand the phenomenon, the experience of a parent who decided against residential group home placement was explored through interview (n = 1). Mean age of the parent caregivers was 62.1, mean duration of caregiving across the group was 25.1 years, mean duration of years since placement across the group was 3.8 years. Results: The basic social problem was identified as parent caregiver readiness to make a decision. Parents Cannot be Caregivers Forever was identified as the core concept/central problem of caregiver readiness. When parent caregivers identified the reality that they could not be caregivers forever based on the caregiving demands of the adult child with ID/DD, they were ready to make residential group home placement decisions for their adult child with ID/DD. Four parent caregivers’ theoretical constructs were associated with the identified reality that Parents Cannot be Caregivers Forever: normalcy, burden, mortality, and support system. Parents go through many stages and adjustments during their lives when caring for a child with ID/DD. It is imperative that placement information be presented to parents by the interdisciplinary team at a point in time when they are receptive to accept. This research also identified that it is important for parents to communicate with other families and have interaction with supports that offer a sense of what the future may look like. By including the healthcare team and particularly nurses, parents will be able to adapt the information and participate in a shared decision-making process. Conclusion: Nurses are often part of the decision-making process when the parent caregivers of a person with ID/DD are making the decision for possible placement for their adult child who is moving from the family home into a residential group home setting. Residential group home placement decisions for the adult child with ID/DD is based on the parent caregivers’ readiness to identify that parents cannot be caregivers forever presented by the ID/DD diagnosis as the child ages. Greater understanding and clarity of this phenomenon will inform clinicians, nurses, and members of the interdisciplinary healthcare team on the future creation of targeted interventions or strategies to assist with shared decision making for this unique vulnerable ID/DD population. These targeted interventions and strategies can potentially influence parent decision-making experiences positively, improve their decision-making abilities, and offer professionals direction for further research.