Promoting Self management in Indigenous
People with Mental Illness and Substance Misuse
The authors wish to acknowledge the valued assistance of and Neil Spencer
collection of the data, the AIMhi research team and steering committee, the Tiwi
mental health team. The AIMhi NT project was funded by the National Health
and Medical Research Council, the Northern Territory Department of Health
and Families, and the Cooperative Research Centre for Aboriginal Health
Objectives: To explore relapse prevention strategies in remote Indigenous people with mental illness.
Method: A mixed methods design in which an exploratory phase of qualitative research was followed by a nested randomised controlled trial and concurrent collection of qualitative data over 18 months. The research team collected detail of early warning signs of relapse from clients at each data collection point.
Results: Indigenous people with mental illness identified a range of warning signs of relapse and those signs were similar to those found in other studies.
The study supports exploration of early warning signs routinely at assessment as an important relapse prevention strategy. It is important that information and education about common prodromal symptoms of relapse is delivered in language and format which is accessible to Indigenous people.
Key Words: Indigenous, prodrome, relapse, self management
In the face of the high burden of disease in Indigenous peoples there is a need to find and test new strategies for prevention, treatment and relapse prevention (Australian Bureau of Statistics 2005). One important strategy for further exploration is that of self management: a patient’s ability to understand their condition, to recognize early warning signs (EWS), and to work effectively with health care providers and carers. There is increasing evidence that patients with long term illness benefit from self management strategies (Falloon I, Coverdale J H et al. 1998; Wiersma D, Nienhuis FJ et al. 1998; Fitzgerald P B 2001; Bodenheimer, Lorig et al. 2002) and from adoption of a recovery paradigm (Rickwood D 2002; Andresen R, Oades L et al. 2003; Shepherd G, Boardman J et al. 2008) which supports and empowers them to become expert in their own illness (Ellis G and King R 2003; Rickwood D 2004).
Early warning signs are apparent for several weeks before relapse in both schizophrenic disorders and affective psychoses allowing time and opportunity to intervene (Herz MI and Melville C 1980; Yung A and McGorry P 1996; Birchwood M and Spencer E 2001). Early warning signs of relapse (also called relapse prodromal signs) vary between individuals yet key symptoms are consistent across studies (Herz MI and Melville C 1980; Birchwood M, Spencer E et al. 2000; Jackson A, Cavanagh J et al. 2003). Changes of mood, sleep, appetite and behaviour are common (Heinrichs D and Carpenter W 1985; Birchwood M and Spencer E 2001).
Recognition of the same sequential pattern of symptoms in patients each time they relapse, the ‘relapse signature’, has been incorporated into a number of relapse prevention approaches (Hewitt L and Birchwood M 2002; Meadows G 2003). Knowledge about EWS has the advantage of shifting patients from being passive recipients of care to active collaborators in their treatment (McCandless-Glimcher, McKnight et al. 1986; Turkington D and McKenna P 2003). There has not been any examination of early warning signs of relapse in Indigenous people with mental illness, however, and the cross cultural experience of relapse prodrome has not been explored.
There is a particular need to promote self management and relapse prevention strategies for Indigenous peoples given the high rates of hospitalisation and relapse (Nagel T 2005; Nagel T 2006), challenges to cross cultural care and to self advocacy (Australian Indigenous Doctors Association 2004; Eley D, Hunter K et al. 2006; Nagel T, Thompson C et al. 2008), and limited access to specialist services (Bailey R, Siciliano F et al. 2002). This paper reports qualitative findings of a mixed methods study in three remote communities in the Northern Territory. Details of the full design and results of this Australian Integrated Mental Health Initiative (AIMhi) study have been reported in earlier papers (Nagel T 2008; Nagel T, Robinson G et al. 2009). This is the first study of its kind exploring early warning signs of relapse in Indigenous mental illness.
An exploratory phase of qualitative research was followed by a nested randomised controlled trial. Quantitative and qualitative data were collected at 6 monthly intervals between December 2004 and August 2007. Quantitative data included self report and clinician rated measures of well being, psychiatric symptoms, and substance dependence. In addition a self management scale, Partners in Health Questionnaire (PIH) abbreviated to five items measured knowledge of illness, knowledge of treatment, early warning signs, and progress toward goals (Battersby M, Ask A et al. 2003). Ten local AMHWs and one recovered client participated as key informants and co-researchers and assisted in development of psychoeducation and treatment resources (Nagel T and Thompson C 2007). Participants were current patients with chronic mental illness (duration of symptoms greater that six months or at least one previous episode of relapse). The study recruited 49 Indigenous patients and 37 carers. Participants were given an explanation of the project in plain English in spoken, written and pictorial format with local translation where needed. Ethics approval was granted through the Darwin-based Joint Ethics Committee.
Two one-hour treatment sessions two to six weeks apart integrated problem solving, motivational therapy and self management principles (Lorig K and Holman H 2000). The research team gathered information about current and past symptoms during semi structured interviews at each data collection point.
Exploration of early warning signs
Clients were shown a pictorial representation of early symptoms of relapse and were asked whether they had experienced any of those symptoms before they ‘got sick’ (Figure 1). Changes in ‘mood’, appetite’ ‘sleep’ and ‘other’ symptoms were explored through three close ended items and one open ended item. The changes were not current experiences but explored symptoms they had noted in the past before an episode of illness. The responses to the close ended items were analysed using descriptive statistics while responses to open ended questions were categorized and frequency counts made of each category.
The average age of the patients was 33 years and participants were diagnosed with psychotic and affective illnesses (schizophrenia 37%, schizoaffective disorder 2%, and substance induced psychotic disorder 10%, bipolar affective disorder 6%, major depressive disorder 6%). Further detail of the client profiles and outcomes has been reported in earlier papers (Nagel T, Robinson G et al. 2009).
Participant responses were recorded and grouped at each of the four assessment points (Table 1). Most clients were able to identify EWS at baseline and this was maintained throughout the course of the study with all participants identifying at least one sign at the last two assessment points. The participant responses were grouped into seven categories of EWS and compared across time (Table 2). The ‘other’ EWS fell into four other categories ‘psychotic symptoms (e.g. hearing voices) psychomotor disturbance (e.g. ‘restless’ and ‘walking around a lot’), thought disturbance (e.g. ‘mixed up thoughts’) and social withdrawal and diminished energy (e.g. ‘staying inside’,’ not interested in things’ and ‘no energy’). These categories are similar to those of larger relapse prodrome studies (Heinrichs D and Carpenter W 1985; Herz M, Lamberti J et al. 1995).
Mood changes such as ‘feel cranky’ were generally the most frequent symptoms for all individuals across all diagnoses apart from one exception: sleep change was as common as mood change in the setting of Bipolar illness. There was a tendency for clients to identify more ‘other ‘warning signs as time progressed. At baseline 5% of early warning signs identified were ‘other’ and by the fourth assessment at 18 months these were 27% of signs identified. The client rated self management scale (PIH) showed significant improvement in scores from baseline to 18 months .
This study confirms the ability of patients to recognise EWS and throws light on the nature of those early indicators of relapse. These early warning signs: mood change, appetite change, sleep disturbance, and psychomotor disturbance match the signs and symptoms noted in other studies of affective and psychotic prodromes. The progression toward increased recognition of ‘other’ warning signs throughout the study suggests that the clients were becoming more familiar with the concept over time. These ‘other’ signs were reported in response to an open ended item as opposed to the specific prompts of ‘mood’ ‘sleep’ and ‘appetite’ change.
The concept of relapse is complex and potentially difficult to communicate in a cross cultural setting with differences of language and literacy. These findings support the introduction of a relapse prevention model. They show that with a pictorial tool (and an assessment process linked with local Indigenous mental health workers) clients were able to understand the concept and describe their experiences. An understanding of EWS from both practitioner and client perspectives lays the groundwork for client education and opportunity of self management and relapse prevention.
One of the limitations of this study is the small number of participants and the specific setting in three remote communities. There is uncertainty about the degree to which the findings can be generalised to other settings. A second limitation of the study is that it did not explore change in symptoms over time. Birchwood and Spencer, for example, present a three phase model of symptom development prior to relapse (cognitive, mood, and pre psychotic). This study was not designed to address this aspect of prodrome and did not shed light on change of symptoms over time (Yung A and McGorry P 1996; Birchwood M and Spencer E 2001). These findings nevertheless strongly support integration of early warning signs recognition into the routine assessment and follow up of Indigenous clients in remote communities.
Indigenous people in the NT have high rates of mental illness and high rates of recurrent hospitalisation (Nagel T 2006). Relapse prevention is an important component of care and yet models which address relapse for Indigenous people have not been developed. The majority of Indigenous people with mental illness in this study identified at least one early warning sign of relapse and those signs and symptoms were similar to those found in other studies. It is recommended that exploration of EWS and a ‘relapse signature’ is routinely undertaken at assessment with patient and family, and that EWS information is incorporated into psycho education resources in language and format which is accessible to Indigenous people. The AIMhi program of research has developed pictorial care planning and psychoeducation resources and continues to deliver related ‘Yarning about mental health’ training which highlights the importance of early warning signs and self management skills (Nagel T, Thompson C et al. 2009). These developments are important directions for empowering Indigenous clients with mental illness.
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