Patient-Centered Mental Health Care: Encouraging Caregiver Participation

Abstract

Caregivers of patients with mental illness play a vital role caring for their loved ones, yet they may not always be fully included in the process of assessment and treatment. A patient-centered approach to treating persons with mental illness views caregivers as partners in providing care for the patient. This study sought to explore perceptions of caregivers of persons with mental illness regarding the care their loved ones receive and to illicit specific issues caregivers wish to communicate with professionals that could improve patient care. A modified nominal group technique exercise was conducted as part of a suicide prevention workshop. Participants completed a four-item questionnaire. Five main themes emerged the caregivers' perception that they need to be included in the mental health care of their loved one; concerns about the diagnosing process; communication with professionals; a desire for individualized, holistic treatment; and the need for information about services and resources for the caregiver and the patient. Findings are similar to studies that also sought to understand the perspectives of caregivers. Caregivers provide an invaluable resource for the patient with mental illness. Efforts to include caregivers would enhance the overall care provided to patients with mental illness.

Systematic synthesis of barriers and facilitators to service user-led care planning

“… 52 – 54 Rather, service users and carers express a preference for – and portray a greater readiness to participate in – strength-based approaches based on concepts of recovery and hope. 21 , 24 , 25 , 32 , 42 , 46 , 55 , 56 These preferences are highlighted in rigorous qualitative studies and supported by correlational studies and surveys that report enhanced service user satisfaction and engagement with individualised care planning and case management models. 52 , 55 , 57 – 63 …”

“…2 , 3 , 5 , 6 , 26 – 38 In-depth qualitative data suggest that the primary driver for this involvement is the desire of service users and carers to move away from traditional, paternalistic models of care towards more patient-centred approaches capable of prioritising and responding to individual need. 21 , 24 , 25 , 32 , 39 , 40 – 42 Service user and carer discourses highlight a marked gap between policy and practice created by an overreliance on diagnostically led consultations, 25 , 41 , 43 , 44 and a failure among mental health professionals to address multiple or dual-diagnostic needs. 21 , 42 , 45 These observations are reflected in quantitative audit and survey research which, although biased towards in-patient settings, confirms a desire for (or lack of recognition of) patients' strengths, 31 , 46 , 47 and potential neglect or misinterpretation of their physical, vocational, social and cultural needs.…”

“…Irrespective of setting or publication date, small and larger-scale quantitative surveys have consistently reported gaps in service users' and carers' understanding of care planning procedures and their implementation within secondary mental healthcare. 3 , 22 , 38 , 46 , 64 – 71 Although smaller in number, rigorous qualitative studies confirm that service users and carers lack staff and service feedback, 21 , 41 , 42 , 72 and often receive insufficient information and support to contribute meaningfully to decisions about their care. 21 , 41 , 42 , 51 , 72 – 77 Specific to carer discourse is the claim that patient confidentiality serves as an effective but potentially ill-used barrier between mental health professionals and themselves.…”

“…3 , 22 , 38 , 46 , 64 – 71 Although smaller in number, rigorous qualitative studies confirm that service users and carers lack staff and service feedback, 21 , 41 , 42 , 72 and often receive insufficient information and support to contribute meaningfully to decisions about their care. 21 , 41 , 42 , 51 , 72 – 77 Specific to carer discourse is the claim that patient confidentiality serves as an effective but potentially ill-used barrier between mental health professionals and themselves. 78 , 79 From the patients' perspective key deficits have been identified in their illness understanding, knowledge of the medicolegal aspects of mental healthcare and their awareness and appreciation of medication choices and side-effects.…”

Voices of care for adults with disabilities and/or mental health issues in Western Canada: what do families and agencies need from each other?

“…Models of practice emphasising collaboration between paid and family caregivers are informed by compelling research accounts of the sustaining power of family in the lives of adults with disabilities and/or mental health issues. Support from family is upheld as offering continuity and hope to people with disabilities and/or mental health issues whose lives are characterised by relationships with a multitude of paid caregivers (Wells & Oddie , Buila & Swanke , Lashewicz et al . ).…”