A systematic review of family experiences of deinstitutionalisation for people with intellectual disabilities, and an empirical study of the experiences of social support in forensic mental health settings

McCarron, Laura-Beth 2025. A systematic review of family experiences of deinstitutionalisation for people with intellectual disabilities, and an empirical study of the experiences of social support in forensic mental health settings. ClinPsy Thesis, Cardiff University. Item availability restricted.

	PDF (DClinPsy Thesis) - Accepted Post-Print Version Restricted to Repository staff only until 22 September 2026 due to copyright restrictions. Download (3MB) | Request a copy
	PDF (Cardiff University Electronic Publication Form) - Supplemental Material Restricted to Repository staff only Download (145kB) | Request a copy

Abstract

Paper 1 is a qualitative systematic review of families’ experiences of relatives with Intellectual Disabilities (ID) transitioning from hospital to a community-based setting, specifically considering the strengths and challenges of the process, as well as recommendations for future community transitions. Deinstitutionalisation is an ongoing, global initiative for individuals with ID and focuses on enhancing the quality of life and empowerment through the transition from institutional care to community-based living. Although associated with positive outcomes, the process remains complex and, given the interdependence between individuals with ID and their families, transition also presents significant changes to the whole family. Families are important for successful community transition, yet their experiences during these transitions have not previously been systematically reviewed. Searches were conducted on seven databases to identify qualitative studies exploring families’ experiences of the deinstitutionalisation process of their relatives. Eleven studies were identified and critically appraised using an adapted Critical Appraisals Skills Programme (CASP) quality measure. Thematic Synthesis revealed four overarching analytical themes. The first theme, ‘It’s an emotional journey’, captured the fluctuating emotional experiences at differing points of the transition process for families. The second theme, ‘obstacles and opportunities for family involvement’ highlighted the families’ navigation of their involvement throughout the process, often oscillating between powerlessness, feeling confused, and inclusion amidst their strong desire to be supported to be involved to achieve person-centred care for their relative. The third theme, ‘balancing ideals with the realities of community care’, noted the tensions between the ideals of stability, consistency, and good quality care within systemic and financial barriers. The final theme, ‘bridging integration within limits’, revealed the perceived opportunities for community integration and deeper familial connections amongst political and societal challenges. This review underscores that deinstitutionalisation is a complex and ongoing process for family members of relatives with ID and requires careful and collaborative planning as well as emotional and practical support for families. Moreover, supporting families to embrace a human-rights-based approach may transform their own and their relatives’ experiences through supporting autonomy, capability, and inclusion. Achieving meaningful community living for individuals with ID requires sustained professional, societal, and political commitment to reducing stigma associated with ID, fostering genuine social connections, and upholding individual choice. Finally, the review offers critical insights for advancing inclusive policies and practices globally by including studies from countries at varying stages of deinstitutionalisation. Paper 2 explored the experiences of social support for individuals residing in forensic mental health settings (FMHSs). Social support is associated with positive outcomes for individuals in FMHSs and is essential to consider within recovery. Experiences of social support are often complex and variable, particularly given the high prevalence of attachment-related challenges, systemic barriers, and challenges faced by support networks in providing support. Despite this, limited research has explored how social support is experienced in the context of recovery for people residing in FMHSs. Through semi-structured interviews with nine participants residing in medium-secure FMHSs, the study explored the sources, experiences, and perceived role of social support in recovery. Participants identified family members, particularly mothers and siblings, as their primary sources of support, alongside peers within the hospital and pre-existing community relationships. An Interpretative Phenomenological Analysis (IPA) approach identified three main themes: 1) ‘Cultivating emotional resilience through relationships’, 2) ‘A delicate struggle for connection and autonomy in the face of power’, and 3) ‘Ongoing journey of personal and relational growth’. The themes revealed how social support fostered emotional stability and rebuilding of participants’ identity, self-worth, and hope through emotional and practical support, validation, affection, and humour. Whilst recovery was often marked by the need for both external validation and internal resilience, acceptance from others was particularly pertinent in achieving self-acceptance amidst shame. However, participants also described internal struggles with trust, fear of judgment, and concerns about burdening others, which impacted how they relied upon their support networks. This was intensified by limited autonomy within their relationships and the hospital environment. Despite these barriers, participants described an ongoing process of moving from guardedness to more consistent mutual understanding with their support networks and stronger, growth-promoting relationships with emotional reciprocity, boundary-setting, and trust emerging as key processes. This study contributes to the existing literature by emphasising the need for FMHSs to create a ‘secure base’ that supports autonomous and meaningful attachments between service users, families, and professionals whilst recognising the unique challenges faced within these settings. A delicate balance of risk management with meaningful connections, consistent and empathetic communication, and emotional processing is vital for personal and relational growth. Findings also suggest the value of fostering connections through peer initiatives and the significance of community integration within recovery.

Item Type:	Thesis (DClinPsy)
Date Type:	Completion
Status:	Unpublished
Schools:	Schools > Psychology
Subjects:	B Philosophy. Psychology. Religion > BF Psychology
Date of First Compliant Deposit:	22 September 2025
Last Modified:	23 Sep 2025 08:54
URI:	https://orca.cardiff.ac.uk/id/eprint/181222

Actions (repository staff only)

Edit Item