Care Experiences of Adults With a Dual Diagnosis and Their Family Caregivers

Abstract

Individuals diagnosed with developmental disability and mental illness (a “dual diagnosis”) contend with multiple challenges and system-related barriers. Using an interpretive description approach, separate qualitative interviews were conducted with adults with a dual diagnosis (n = 7) and their caregiving parents (n = 8) to examine care-related experiences. Results indicate that individuals with a dual diagnosis and their families experience misunderstanding and stigma. Families provide informal complex care amid insufficient and uncoordinated services but are often excluded from formal care planning. A lack of available funding and services further impedes care. While negative care experiences are reported as prevalent, participants also describe instances of beneficial care. Overall, findings indicate a lack of sufficiently targeted resources, leaving families to absorb system-related care gaps. Recommendations include person- and family-centered care, navigation support, and capacity building. Prevention and emergency and crisis care services, along with housing, vocation, and other supports, are needed. Practice and research development regarding life span needs are recommended.

A Comparative Case Study of Hospice and Hospital End-of-Life Care for Aging Adults With Developmental Disabilities

“…Healthcare providers, including nurses, often lack training and knowledge specific to the treatment of individuals with developmental disability. Similar to the findings of Nicholas et al (2017) regarding people with the dual diagnosis of developmental disability and mental illness, system-related barriers are pervasive in end-of-life care. Institutional policies and practices have contributed to extensive waitlists and other barriers to access services (Fisher et al, 2020; Tuffrey-Wijne et al, 2016).…”

“…There is, however, a body of research emerging from the United Kingdom, Australia, and the Netherlands to suggest that unique factors disproportionately shape the experiences of people with developmental disabilities at the end of life, including: behavioral health needs, complex comorbidities, and polypharmacy (Nicholas et al, 2017; O’Dwyer et al, 2016; Tuffrey-Wijne et al, 2016). Botsford (2000) noted several other individual-level factors that influence the response of people with developmental disabilities to death and dying, including: past learning and experience, intellect, communication skills, and family and staff perceptions of both the person and the circumstances of serious illness.…”

“…Agency factors can also influence providers’ responses to individuals with a developmental disability who are nearing life’s end. These agency factors may include intricacy of staff roles, administrative policies and procedures, funding constraints, and complexity of community networks of service (Botsford, 2000; Nicholas et al, 2017).…”

Quality of life in adults with intellectual disabilities and mental health problems

“…People with intellectual disabilities and mental health problems sometimes face more obstacles in accessing education, leisure, and health services than their peers without mental health problems (Nicholas et al, 2017; Scott & Havercamp, 2014). In access to mental health services, these barriers include the poor ability to communicate their symptoms and the need to trust the information provided by third parties, inappropriate use of psychiatric medication, and the fragmentation between social services and mental health services (Ahlström et al, 2020) and the shortage of professionals (e.g., direct care personnel, nurses, general practitioners, psychiatrists, psychologists, social workers, etc.)…”

Commentary on “The experiences of Covid-19 ‘lockdown’ for people with a learning disability: results from surveys in Jersey and Guernsey”

“…People with intellectual disabilities are considered an at-risk group due to mental and physical health multimorbidity (Cuypers et al, 2020;Alexander et al, 2020). This population typically depend on a wide range of health and social care support systems because of complex needs, but these can often be difficult to access (Nicholas et al, 2017;Weise et al, 2020). The pandemic has amplified cracks in health and social care systems through years of underfunded services, and as a result, these services have been adversely impacted by increased demand, limited resources and ever-changing government guidelines.…”