Future care planning of adults with childhood-onset neurodevelopmental disabilities: A scoping review
Bibliographic record
Abstract
BACKGROUND: Advances in medicine have increased the life expectancy of adults with neurodevelopmental disabilities (ND). These individuals often reside with aging family caregivers, who also experience age-related health issues. However, many caregivers lack future care plans for their adult children. Thus, there is a pressing need for practical solutions for family-centered future care planning (FCP). AIMS: To summarize the literature on the key components of FCP for adults with ND and their familial caregivers. METHODS AND PROCEDURES: This scoping review adhered to the Joanna Briggs Institute guidelines. It utilized search terms related to ND and FCP and conducted searches in four databases. Data were analyzed thematically. OUTCOMES AND RESULTS: The initial search generated over unique 9000 articles. The review identified facilitators, such as preferences, family-centered approaches, advocacy, and formal support, which promote effective FCP. Barriers to FCP included caregiver hesitancy, limited resources, the emotional nature of future care planning. Recommendations for addressing these challenges included policy and practice support, healthcare professional education and training, and the active involvement of clients and caregivers in FCP discussions. CONCLUSIONS AND IMPLICATIONS: This review contributes to the understanding of FCP for adults with ND and offers insights for improving family-centered care planning processes. WHAT THIS PAPER ADDS?: This paper contributes to the literature by highlighting the pressing need for comprehensive future care planning (FCP) for adults with neurodevelopmental disabilities (ND) and their aging caregivers. With increasing life expectancy for adults with ND, there is a growing population of aging caregivers who often lack proactive FCP. The review identifies common FCP facilitators, barriers, and recommendations, emphasizing the emotional and financial challenges caregivers face. On the macro level, distrust of the public sector, a crisis-driven healthcare system, and a lack of funding and information present significant challenges. On the micro level, emotional attachment to adult children with ND can lead to family instabilities, uncertainties about the "right decision," and feelings of helplessness and guilt among caregivers. It underscores the importance of taking a family-centered approach, involving the adult with ND, and providing healthcare professionals with the necessary education and support to guide caregivers through the FCP process. The paper also highlights the limited existing interventions and calls for further research to address this critical issue. By reviewing a broad range of studies, the paper sets the stage for future research and practice in this area. It offers valuable insights into the components of FCP that can inform recommendations for healthcare professionals, caregivers, and individuals with ND to enhance the continuity of care. In doing so, it aims to address the gaps in the existing literature, particularly the lack of caregiver-informed recommendations for comprehensive FCP.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.008 | 0.037 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.002 | 0.003 |
| Bibliometrics | 0.009 | 0.008 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.004 | 0.003 |
| Open science | 0.002 | 0.002 |
| Research integrity | 0.003 | 0.002 |
| Insufficient payload (model declined to judge) | 0.004 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".