"Only the sufferers know just how difficult it is, what it is like to be in a black hole with absolutely no emotion ... (but) it is common to hear people say: 'You look fine! What's your problem? Do something!' Have those people ever looked into the eyes of the sufferers, dull and lacklustre? Do they see a smile or a tear? No. They save their compassion for the physically afflicted."
". . . when I feel depressed, I feel like I am at the bottom of a deep well. I try to climb out of that well to get closer to the light, but every time I seem to be making progress I fall back to the bottom of the well."
In Australia, the National Mental Health Strategy (1993–2003) recognises the rights of consumers of mental health services and carers of people with mental illness. It seeks to extend their roles in the planning, delivery and evaluation of mental health services and to reduce the stigma associated with mental disorders.1,2 Mental health providers have become familiar with the benefits to be gained by promoting such roles and incorporating consumer and carer perspectives into ongoing medical education and publications.3,4 Much of this participation has been by people with severe or chronically disabling mental illnesses and their family members. It has focused largely on interactions with public mental health services.
For beyondblue: the national depression initiative, a high priority has been to increase the roles of people with depression and anxiety by increasing community awareness, promoting destigmatisation and influencing public policy and healthcare services development. As people with these disorders commonly do not present for medical treatment,5 or are managed largely within the primary care sector,5,6 it is essential for beyondblue to use strategies that go beyond consultation with existing organisations. In this report, we describe the outcomes of the first year of a broad strategy designed to identify the major concerns of people with depression and their families and carers.
Consultative processes were designed to elicit information from a broad group of people with depression or anxiety and their families or carers. The specific mechanisms included public meetings, focus groups, website-based mechanisms (http://www.beyondblue.org.au — bulletin board, facilitated discussions, feedback, posting of consumer and carer experiences), and consultation with existing consumer and carer organisations. These processes were conducted nationwide and used strategies to ensure participation from a wide group of people in metropolitan, regional and rural areas.
The public meetings were widely advertised as a process for increasing community awareness of depression and providing a forum for discussion of depression-related issues. The meetings included presentations by a specialist mental health professional, a consumer (and, in some instances, a carer) and a general practitioner, and a period for extensive discussion. Each major issue raised during the open feedback session was recorded electronically and displayed to the audience. At the conclusion of each meeting, evaluation forms were distributed requesting demographic information, ratings of the session and general comments. People were also encouraged to provide further feedback via the beyondblue website. There was no specific emphasis in the eliciting of negative or positive responses from participants; rather, we aimed to provide a mechanism to voice publicly the experiences of people whose lives had been affected by depression. Several consumers and carers were asked to prepare short pieces for this report (Appendix).
The beyondblue website was launched in April 2001 and includes a bulletin board focusing on key issues such as "experiences with antidepressant drugs" and "experiences with psychological treatments". The aim was to encourage the personal description of experiences and views on these topics, thereby enabling consumers and carers to report directly their narratives and perspectives.
Additionally, a large amount of written material had been received by beyondblue from individuals as well as organisations. Key perspectives have been included in the discussion presented here.
Focus groups were designed to enable in-depth discussion of key themes with smaller groups of participants. Participants for the focus groups were recruited via prior participation in community meetings, contact with the website, written contact with beyondblue, or participation in a current consumer or carer organisation. The recruitment process emphasised the representation of people from a variety of sources. Priority was given to participants who had recovered and resumed social and occupational roles. There was a deliberate attempt to limit the number of participants who had chronic or severe illnesses or who had ongoing high levels of use of specialist services. Most participants were consumers with experiences of both the primary and secondary healthcare systems. Carers, and consumers who were also carers, were also specifically recruited. For each focus group, 7–9 people were contacted to obtain 6–8 participants (allowing for non-attendance) per group. Participants were paid a nominal fee for their time.
The focus groups were conducted by one facilitator (B G McN) and followed a structured format. Four stem questions emphasising the ongoing difficulties faced by consumers and carers were used:
How would you describe the impact of depression and/or anxiety on you and your family?
What factors make this experience worse than it may already be?
What factors would make it less severe?
What do you consider to be the main areas of need for persons who experience depression and their families?
There were no specific questions designed to elicit positive experiences. The responses from the focus groups were collated by the facilitator from transcripts of audio recordings or notes taken by a scribe or the facilitator during the focus group sessions. These were later subjected to thematic analysis by the facilitator and an independent psychologist (N J H) with experience in conducting this type of analysis.
Twenty-one public meetings (1529 participants; mean attendance, 73; range, 20–200) were held in a wide range of metropolitan (12 meetings; 894 participants [58%]), regional (6 meetings; 409 participants [27%]) and rural (3 meetings; 226 participants [15%]) settings across Australia. Formal evaluation forms were returned by 911 (60%) participants (603 [66%] females; 53 [6%] aged 15–24; 380 [42%] aged 25–44; 410 [45%] aged 45–64; 60 [7%] aged 65 years or older). Although the numbers of participants who were consumers, family members, carers, healthcare professionals or interested community members were not recorded, discussions indicated that a wide range of participants attended, some of whom had current or past experiences with depression (directly or indirectly) of varying severities.
The key themes largely concerned healthcare services and responses of the wider community. Consumers and carers who related their experiences in these public settings commented directly on the personal relief associated with such disclosure. The value of such personal experiences for increasing community awareness and respect for people whose lives are affected by depression was also rated highly by the wider audience. Common themes are listed in Box 1.
In regional and rural settings, important healthcare service differences included the relative or absolute unavailability of specialist services and, in smaller centres, lack of access to GPs. The critical role of GPs in mental healthcare was more openly accepted in these communities. By contrast, in metropolitan areas, the barriers to specialist services were largely related to cost, and the central role of GPs was more frequently questioned.
The issues related to stigma were viewed somewhat differently in rural settings. While the difficulties of living with a mental disorder within a small community were highlighted, so too were the opportunities for a more cohesive and coordinated community response. The larger size of the audiences in small rural centres and the attendance of local politicians and dignitaries were notable. The impact of youth suicide on the local community was more openly recognised.
This mechanism provided both brief and detailed responses. Most of this material detailed personal experiences, but some included lengthy critiques of beyondblue or the "medical model" of mental illness. Others provided detailed information that proved invaluable in taking forward issues such as exclusion in insurance or overt barriers to care within specific healthcare systems.
Nine focus groups were conducted during a seven-month period (69 participants; average group size, 7.6; range, 6–9; 49 [71%] female) in each State and Territory in Australia (two focus groups were held in Victoria). The response rate of people invited to take part was very high, with only two people declining for reasons other than availability on a particular night. In broad terms, the focus groups disclosed similar themes to the public meetings. However, the groups provided a more in-depth level of understanding of the difficulties faced by consumers and carers. Key themes are detailed below. Direct quotes have been augmented by other written material.
The personal, family, social, occupational and health consequences of the ongoing stigma associated with even common forms of mental illness, such as depression and anxiety, were highlighted. The inability of family members to appreciate the experiences of people with depression was emphasised. Family members, like members of the wider community, may not believe or understand that depression is an illness. Rather, they tend to see depression as normal sadness, a transient response to difficult circumstances or a self-correcting period of psychological distress. Such attitudes result in unhelpful comments such as "just pull your socks up" or "just put some lippy on, love". Consequently, such attitudes often prevent the establishment of an empathic or supportive home environment. As people with depression withdraw from the wider world, they become more reliant on family and close friends.
"I really don't have anyone who understands. My great boyfriend of the last four years just doesn't understand depression. He thinks I'm just sad."
"My family and friends didn't understand, or didn't want to know, one or the other."
"I have only told my family in the last month, and got the exact response I expected from my mother. I was told I should work through it."
"I wanted my partner to call the doctor but he was embarrassed and said there was nothing he could do."
Specifically, the absence of any medical sign of illness was likely to contribute to a reluctance to accept depression as "real". Consequently, community responses rarely indicated that persons with depression were accepted as being ill.
"How often do you see flowers and chocolates brought into a psychiatric ward?"
"Friends don't understand. They don't visit when I'm in hospital and they assume that I don't want to socialise."
In turn, depression was still largely perceived as personal inadequacy rather than an illness.
"Physical illness happens to me, but depression is perceived to be a weakness within me."
"Anything to do with the mind is about who you are — that promotes the stigma."
The impact of stigma was often seen in attitudes towards seeking medical care or continuing appropriate treatments.
". . . took a lot to finally talk to my GP about the fact that I was depressed. Before, I only went to the GP when I was able to be 'up' for her."
"I've had insensitive doctors give me the 'no pain no gain' speech so many times it makes me puke!"
The stigma experienced by people taking medications was particularly severe and a strong pressure existed (even from family members) to discontinue treatment.
"Very reluctant to mention to anyone that I am on antidepressant medication. There is still a very high stigma attached."
"I ran out of my tablets and was just too depressed to be bothered to go out and get any more and also, to be truthful, I felt angry because I was on them . . ."
"I'm a bit, no a lot, concerned that I am going to take this drug for a long time. Makes me feel pathetic that I require a chemical to stay out of the black."
A fundamental lack of understanding was also felt to be characteristic of healthcare providers. Consumers faced significant frustrations when they presented their deeply personal experiences to healthcare professionals.
"Depression for one person is not the same as depression for another — they just can't all give the same treatment for everyone all the time."
"I feel like my basic humanity has been denied."
This frustration was fuelled by encounters with a healthcare system that appeared poorly planned or unwilling to address the specific needs of people with depression.
"I feel like healthcare professionals are just in this to meet their needs, not mine."
"I now believe the health professionals do more to stigmatise the illness and they alienate patients from loved ones, the people they need most."
As a result, the experience of seeking appropriate treatment was likened to a persistent battle both for consumers and carers.
Perhaps the greatest difficulties existed for people who had a dual role, being both a consumer and carer. Consumers who were also carers talked about the lack of credibility that they sometimes had with healthcare professionals when they ask for help for someone they were caring for.
". . . the double burden of being a consumer and carer can make me feel there is no end to the nightmare."
The lack of responsiveness of emergency services was frequently raised. For example, a man who had self-mutilated as a result of severe depression presented to a casualty department and was told by the triage nurse, "You'll have to wait, we only treat sick people here."
Most people's first contact with healthcare services was through their GP. While many reported positive responses, it was not uncommon for people to receive demeaning responses.
"I spoke to my GP about my feelings, but was assured that I didn't have postnatal depression. [I was told] I was just dealing with an unhappy baby and that anyone in my position would be feeling that way."
This sense of not being taken seriously was not limited to consumers, but was frequently reported by carers.
"I suffered two years of hell and when I consulted a GP I got no help. I lost my rights to depression and have become cynical of the medical profession . . . I wish someone had told me 'Don't let loved ones be treated for depression by health professionals that won't involve a family member'."
The burden of care was generally underestimated in caring for people with depression.
"No, I didn't suffer depression but my husband of 30 years did. In many ways I suffered more than him. He doesn't remember or believe he suffered depression."
"My fiancé became my carer. He would arrive home from work each day afraid he'd find me hanging somewhere, or in a pool of blood. He was the only thing that kept me alive and only just. He was the only person who supported me, carried me, throughout my illness."
The inability or unwillingness to view depression as an illness has major repercussions in the workplace, resulting in overt and covert discrimination. Participants gave many examples of instances where they had informed their organisation of their depressive illness, resulting in an inability to get work, or then being undermined and unable to get promotions.
"If you tell someone you've got a problem, they wouldn't employ you. End of story. You are not qualified, you're overqualified, you're too old, you're too experienced."
"I missed out on that promotion last year, I've missed out on one again last week, I've got to stand up and fight them. Mainly for me, and prove to them too that I might have a mental illness but I can still damn do the job!"
"At first I told one lie after another and in the end I decided to come clean and tell the truth, so I told the truth and I've decided it's the worst thing I think I've ever done for future prospects in that company."
In addition there were also examples of consumers who had lost their jobs as a direct consequence of their depressive illness.
The major theme elicited by our consultation processes was the stigma experienced by people whose lives had been affected by depression. This issue dominated experiences with the healthcare system and barriers to participation in the wider society. Although the experience of stigma is widely reported by people with psychotic, severe or chronic mental disorders,3,4 the extent of these experiences for people with common forms of depression and anxiety is surprising. Many of the people reporting these experiences had only received treatment in the primary care sector. Most had resumed active lives and returned to work. However, the responses of the community and the healthcare services to people with depression and anxiety appear not to differ greatly from the responses to people with psychotic or chronic forms of mental illness. All face major ongoing barriers to social participation and many report being demeaned by their experiences with healthcare service providers.
As many of these people are not compelled to seek treatment, the widespread experience of stigma contributes significantly to delays in seeking treatment, reluctance to access specialist care and reluctance to continue medical treatments. The widespread lack of empathy and understanding from the general public, employers, insurers and other social institutions may be underpinned by ignorance rather than active discrimination,7,8 and is consistent with broader surveys of community attitudes in Australia.8-10
The reported attitudes of healthcare providers are serious evidence of professional failure to view mental disorders as major general health concerns. Many of the experiences portray a healthcare system that has not given sufficient consideration to issues such as access, cost, physical characteristics of treatment settings, integration of medical and psychological care, natural history of illness, disability due to illness, ongoing personal and social needs and factors that predict long-term recovery.11,12 Consumers and carers perceived services as focusing largely on reducing danger of self-harm or promoting remission of symptoms rather than promoting notions of personal recovery, long-term outcomes or return to full social participation. A recent international review13 of Australia's National Mental Health Strategy (1993–2003) noted that consumers and carers:
". . . are still not fully satisfied with the rate of progress [in terms of change in mental health services] as their expectations of service responsiveness and quality still outstrip their direct experience." [p 15, emphasis added]
Through both traditional (eg, consultation with representative organisations) and novel (eg, consultation via the Internet and community meetings about depression) strategies, we sought to actively recruit people with depression and their families whose perspectives may not have been included previously. We believe that this resulted in highlighting perspectives that have not received adequate public attention. This has assisted us to develop an agenda for promoting consumer and carer issues for people whose lives have been affected by depression or related disorders (Box 2).
A limitation of our approach is that we did not recruit a representative sample of people attending primary or secondary care services. Participants might have been more likely to have had negative experiences. Further, as the focus groups did not specifically seek reports of positive experiences, the overall picture might not be as bleak as the experiences highlighted here. An alternative approach, at least with regard to experiences with healthcare services, is to assess consumers' experiences of care quantitatively. Studies of this type have been conducted in association with the Australian National Survey of Mental Health and Wellbeing, and suggest that many people with depression and anxiety do have their basic needs for care met by healthcare services.14
Consistent with international reviews of the situation in Australia,13 it is time to move from tokenism to a more mature state in which the role of consumers and carers is respected and affirmed. It is our intention to continue to expand the breadth of this consultation process and provide more in-depth and ongoing analysis. Additional priorities are to promote mechanisms (and methods) for ongoing consumer- and carer-based monitoring of the quality of services provided12 and to include key measures of consumer- and carer-based concepts of meaningful outcomes in future treatment and healthcare services research. By working with consumers and carers, beyondblue gives a public voice to people whose lives have been affected by depression. We are committed to increasing community awareness of depression and destigmatising the illness, so that ultimately the well is not so steep, nor so deep.
1: Common themes arising in the public meetings
For healthcare services:
difficulty accessing family doctors with time, skill or commitment to mental health services;
difficulty accessing specialist care for assessment or ongoing specific treatments;
difficulty accessing non-pharmacological forms of care;
difficulty accessing reliable and useful information about treatments provided (notably antidepressant drugs);
lack of effective responses of healthcare services to emergency situations;
lack of respect for concerns of carers;
lack of continuity of care within healthcare services;
lack of coordination of medical and psychological aspects of care;
lack of availability and professional support for self-help and other non-professional care organisations;
financial costs associated with accessing quality care; and
over-reliance on a highly "medical" model of illness and recovery.
For barriers to wider social participation:
stigma associated with even simple forms of depression or anxiety;
overt and covert discrimination in the workplace;
exclusion by the insurance industry; and
difficulties in families who do not accept mental illness in a family member.
2: A consumer and carer agenda for people whose lives have been affected by depression and related disorders
A. Within healthcare services
Development of more responsive primary and specialist care sectors;
Education of healthcare professionals to ensure that they do not contribute to the stigmatisation of people with depression or anxiety;
Development of improved information resources for people provided with treatments;
Provision of more information about services and treatments available;
Advocacy for improved access to non-pharmacological forms of care at low cost to consumers;
Advocacy for better professions-based responses to the maldistribution of specialist services;
Support for the development of accessible self-help, mutual support and other non-professional care agencies;
Promotion of the key roles of carers, particularly to primary care professionals;
Promotion of a broader model of recovery from illness than that associated with the medical notion of 'remission of symptoms';
Development of novel measures of service quality and mechanisms for collecting such data routinely within healthcare services; and
Development of measures of consumer- and carer-based concepts of clinical recovery that can be incorporated in treatment and healthcare services research.
B. Broader community priorities
Reduction of stigma through increasing community awareness and the promotion of the experiences of people with depression or anxiety;
Workplace and schools-based education programs;
Development of depression prevention programs, particularly for young people;
Development of education resources for the wider community concerning common symptoms of depression or anxiety, as well as how to go about accessing appropriate care; and
Initiating response to formal barriers, such as exclusion from life and income protection insurance.
- Bernard G McNair1
- Nicole J Highet2
- Ian B Hickie3
- beyondblue: the national depression initiative Melbourne, VIC.
Bernard McNair wishes to acknowledge the support of his employers Wesley Mission Sydney and, in particular, Rev. Dr Gordon Moyes AM and Mr Mark Caldwell for their support of work with beyondblue. We also thank Ms Laurie Flynn of Columbia University, New York City, for her invaluable input and support into the focus group program.
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Abstract
Objectives: To describe the experiences of people whose lives have been affected by depression.
Design, setting and participants: Thematic review of data collected from 21 community meetings (1529 people, providing 911 evaluation forms) and nine focus groups (69 individuals) held nationally, and written feedback and website-based interactions with beyondblue: the national depression initiative between April and December 2001.
Main outcome measures: Barriers to social participation experienced by people whose lives have been affected by depression, and their interactions with the healthcare system.
Results: The key theme was the experience of stigma, which was evident in healthcare settings and in barriers to social participation, particularly regarding employment. Inadequacies of primary care and specialist treatment systems were highlighted. Particular emphasis was placed on limited access to high-quality primary care and non-pharmacological care. The stigmatising attitudes of many healthcare providers were notable. Within society, lack of access to knowledge and self-care or mutual support services was evident. Lack of support both from and for people in caring roles was also emphasised.
Conclusions: People with depression are subject to many of the same attitudes, inadequate healthcare and social barriers reported by people with psychotic disorders. Consumers and carers prioritise certain notions of illness, recovery and quality of healthcare, and expect healthcare providers to respond to these concerns.