Consumer and Carer Participation in Mental Health Care: The Carer's Perspective: Part 1—the Importance of Respect and Collaboration

Abstract

The role of family carers in the delivery of mental health services in Australia has become more than an advantage over not having this sort of participation. Increasingly the involvement of non-paid carers (family members and significant others) has been recognised as central to the smooth delivery of care and treatment. Notwithstanding this acknowledgment, there is very little discussion of carer participation in mental health care delivery within the literature. The limited research in this area suggests that carers recognize very little opportunity for genuine participation, even less than is available to consumers. This paper presents part 1 of the findings of an exploratory, qualitative study seeking an in-depth understanding of the attitudes of carers from rural Victoria, Australia toward opportunities for participation with specific emphasis on the role of psychiatric nurses in encouraging or discouraging participation. The themes of respect and communication will be described in this paper. These findings demonstrate the variable experiences of carers in their opportunities to participate and the important role nurses can assume in supporting both carers and consumers through this process.

Fathers’ Everyday Experiences of Having an Adult Child who Suffers From Long-Term Mental Illness

“…The value of knowledge is in line with the findings of Andershed and Ternestedt (1999), who stressed that "to know" could be seen not only as a part of caring but also as a prerequisite for meaningful involvement in the care. Collaboration between natural and psychiatric professional health care has been emphasized as important (Ewertzon et al, 2010;Goodwin & Happell, 2007) yet generally, in our study, the fathers did not find mental health professionals helpful or supportive. Similar findings were reported in studies by Clarke and Winsor (2010) and Reid, Lloyd, and de Groot (2005).…”

Next of kin’s experiences of involvement during involuntary hospitalisation and coercion

“…Similar studies outside Norway confirm that NOK to adults as well as adolescents/children also experience lack of, or inconsistent, support and involvement [1, 6, 7, 14], and experience feelings of powerlessness and alienation by the way they are met [22]. …”

“…They often play an important role as informal caregivers contributing to improvement of the patient’s health [1–5]. Furthermore, they are co-sufferers having been deeply involved in their family member’s suffering for years, and may themselves carry symptoms and ailments as a result of what they have been going through [6–8].…”

“…Next of kin have often been regarded as a cause of the patient’s mental health problems, [1, 7] or at least part of the patient’s dysfunctional behavior patterns. Accordingly, it may seem rational to create a distance between a suffering patient and the family when the life of the patient becomes so intolerable that they need hospitalisation.…”

Directions for Future Patient-Centered and Comparative Effectiveness Research for People With Serious Mental Illness

“…These findings also suggest that psychoeducational interventions should consider gender differences and family roles. In Australia, Goodwin and Happel 142,143 found that family members and significant others contribute to the smooth delivery of care and treatment, particularly when they feel respected and are included in communications, but the researchers also observed a lack of discussion regarding carer participation in health care delivery.…”