Carers' involvement in decision making about antipsychotic medication: A qualitative study

1 INTRODUCTION

Current Australian mental health policy recommends that carers should be involved in the provision of mental health services. This study explores carers' participation in antipsychotic medication decision making. Snowball sampling was used to enrol 29 carers in this study. Data were analysed thematically. The findings highlighted that carers typically received little or no information about antipsychotic medication. Carers commonly addressed the shortfall in information by obtaining additional information through online sources or carer networks. Almost all carers emphasized that they should be involved in decisions about antipsychotic medication, but noted that they were typically excluded. The lack of involvement in medication decisions was a source of frustration, as carers could contribute saliently through sharing detailed knowledge about mental health consumers' lives, address communication gaps and improve communication between health professionals and consumers.

2 BACKGROUND

Carer involvement in service delivery has been recognized as an integral component of mental health care.1, 2 The increased emphasis on carer participation has to some extent been driven by the shift away from hospitals towards primarily providing mental health treatment in the community, wherein carers are more extensively engaged in supporting consumers.3 The development of antipsychotic medication and its subsequent use as the cornerstone of treatment for severe mental illness has been one of the factors behind the increase in delivering mental health care in the community.4 Given their involvement in the recovery of mental health consumers, carers may gain important insight into the effect of antipsychotic medication on consumers' lives and make a valuable contribution to well-informed decisions about the use of medication.

The adverse impact of antipsychotic medication on mental health consumers' lives will also probably be a significant concern for their carers, especially as the side-effects often impair physical and social functioning, and carers therefore will have an important role in assisting consumers with daily activities.5-9 To our knowledge, though, no prior research has explored carers' involvement in decision making about antipsychotic medication specifically. However, other facets of caregiving for mental health consumers have been detailed in several previous studies, which inform the context of this study.

Studies have consistently demonstrated that carers of mental health consumers experience elevated levels of burden and mental distress, and impaired quality of life.10-13 Moreover, recent Australian research reported that almost half of mental health consumer caregivers satisfied criteria for probable psychiatric disorders and were ten times more likely to experience social isolation than other community groups.3 Carers often note that mental health services are not meeting consumers' basic needs, which evokes anguish in carers and increases burden.4 In addition, carers of mental health consumers commonly report that health professionals do not provide information or advice about the anticipated course of mental illness or mental health care in general, which are also sources of significant distress.14-16

In summary, the extant literature reports important details about distress and burden among carers of mental health consumers. The literature notably omits studies that explore carers' involvement in decisions made about mental health consumers' antipsychotic medication regimes. It is important to develop an understanding of carer involvement in such decisions as they often have detailed insight into the lives of mental health consumers and could contribute valuable information about the effect of medication. The aim of this study therefore was to explore carers' participation in antipsychotic medication decision making.

3 METHODS

A narrative approach was used to guide the conduct of the interviews in this study.17 This approach seeks to elicit from the interviewee information about important events and the context in which they occurred. The interviewer aims to exert little influence over the elicited narrative, because the interview's main purpose is to understand social events in terms of the informant's perspective. As such, the narrative approach was well suited for this study, as we sought to authentically reflect the experience of a group of people whose voices have often been marginalized by health professionals and the highly structured care systems in which they work.

4 FINDINGS

The thematic analysis resulted in the identification of four principal themes that provide a rich narrative of carers' participation in antipsychotic medication decision making: Receiving Information about Antipsychotic Medication; Independently Gathering Information about Antipsychotic Medication; Exclusion from Decisions about Antipsychotic Medication; and Contributing to Enhanced Decision Making about Antipsychotic Medication. These themes are detailed in the following sections, and excerpts from the transcripts are provided.

5 DISCUSSION

The carers in this study typically reported that they had received little or no information about antipsychotic medication. Even when such information had been provided, carers expressed reservations about the content of the material. Carers commonly addressed the shortfall in information by obtaining additional information through online sources or distributing among carer networks material that they had developed themselves. Almost all carers emphasized that they should be involved in decisions about antipsychotic medication, but noted that they were typically excluded from these decisions. The lack of involvement in medication decisions was a source of frustration, as carers could contribute valuably through sharing detailed knowledge about mental health consumers' lives, address communication gaps that resulted from disjointed care and improve communication between health professionals and mental health consumers.

Mental health consumers and health professionals typically express interest in collaborative decision making.22, 23 Yet health professionals commonly state that they do not include mental health consumers in decisions because of a perceived lack of capacity.22, 23 The findings of the present study demonstrate that exclusion from decision making also extends to carers of mental health consumers, who have the right to be involved in decision making and clearly have the capacity to make worthwhile contributions.1, 2 The exclusion of carers and consumers suggests that the prevailing culture in mental health services may be controlling, certainly in relation to the experiences of the participants in this location. Hence, mental health services may need to reassess the extent to which consumers, and especially carers, could be more effectively included in decision making with respect to the prescription, delivery and evaluation of antipsychotic medication.

The importance that carers placed on being involved in decision making about antipsychotic medication mirrors the call in the most recent National Mental Plan for enhanced participation of carers in the provision of mental health services.2 Recommendations alone, however, are not adequate and formal structures and processes may need to be implemented to ensure that the level of carer engagement is appropriate for the individual needs of both consumers and carers. One such framework is the Family Involvement in Interpersonal Health Care Processes model.24 This framework articulates a detailed series of pathways, which can be summarized across three main interpersonal areas: relationship rapport, information exchange and medical decision making. Relationship rapport encompasses empathy, trust, respect and other similar interpersonal processes, which result in a genuine collaborative alliance between health professionals, consumers and carers.24, 25 Information exchange depends on health professionals receiving information that enables them to make an accurate diagnosis and deliver appropriate care.24, 26 It also relies on the provision of information that allows consumers and carers to understand the illness and care options, benefits, adverse affects and uncertainty about the results of treatment. Finally, medical decision making involves an iterative process that unfolds over time in consultation with consumers and caregivers.24, 27 In essence, health-care issues and options are communicated in clearly understandable terms that enable carers, and especially consumers, to evaluate them in the light of their own experiences, preferences and values.

While the absence of appropriate information about antipsychotic medication was notable, in those instances where information was provided, carers highlighted a number of salient points about that information. It was noted, for example, that the range of side-effects detailed was so extensive that it was difficult to determine which side-effects were most likely to occur. The large volume of information also tended to result in consumers' catastrophizing about the detrimental adverse effects, although it should be noted such an attitude is not entirely unwarranted as antipsychotic medication commonly produces severe side-effects. In addition to highlighting the most likely adverse effects, information should present the likely benefits of antipsychotic medication, which are often marginal.28 Finally, it is incumbent of health professionals to provide information about the potential impact of antipsychotic medication on consumers' lives and how this might influence the type of support carers would need to provide to consumers, sometimes in an on-going way when medication is recommended for long periods of time. In summary, it would be worthwhile to conduct further studies to develop and workshop information that presents the most likely beneficial and adverse affects of antipsychotic medication, and the types of strategies needed to support mental health consumers as they deal with the consequences of these medications.

In some instances, mental health consumers may have concerns about the extent to which their families are involved in mental health-care decision making. These concerns, though, can usually be accommodated through using communication processes that enable respectful family participation.29 This approach to fostering family involvement is based on the use of release forms that specifically detail information that health professionals can share with families.30 It may be the case that some mental health consumers do not want health professionals to provide any information to their families. However, health professionals are only obliged to not disclose confidential information and can consider what types of information could be given to families without breaching confidentiality. Such non-confidential material can include basic information about mental illness, which may include aetiology, general prognoses, warning signs and symptoms, and standard treatment plans.30

6 LIMITATIONS

The findings presented here reflect the experience of a moderate number of caregivers, who reside in a single Australian state. Also, the sample was self-selected and may have had a particular interest in the researched area. Our results therefore should be viewed carefully as the material might not be representative of carers' perspectives in general. Nonetheless, the findings of this study provide a rich, novel description of diverse carer views in regard to the use of antipsychotic medication, which may be of benefit to health professionals in informing the delivery of mental health care.

7 CONCLUSION

This study builds an understanding of the carers' role when supporting mental health consumers who take antipsychotic medication; their concerns about information and decision making, the sense of exclusion and missed opportunity to contribute usefully to the care process in a collaborative way. Overall, the findings demonstrate the health professionals need to substantially improve the extent to which they collaborate with carers in medication decisions, especially as current Australian mental health policy mandates the involvement of carers in the delivery of services to mental health consumers. Carers often provide essential, intensive support to mental health consumers during recovery, and therefore, their views and experiences should be an integral component of the assessment and production of treatment and health-care services. Further, gaining a more detailed appreciation about carers' lives will assist health professionals to develop appropriate approaches to support carers as they walk alongside mental health consumers in the recovery journey.