Self-help, support and skills for recovery

The Experiences and Needs of Carers and Families Living with People with a High Prevalence Disorder (Anxiety, Eating and Depressive Disorders): A Qualitative Research Project

The research was conducted by the Project Management Group in a partnership between The Network for Carers of People with a Mental Illness and beyondblue: the national depression initiative1.

The Project Management Group was chaired by John McGrath, Chair of The Network for Carers of People with a Mental Illness. The Project Management Group members were Karen Elford, Director, Eating Disorders Foundation of Victoria, Nicole Highet, Senior Researcher, beyondblue, Kathryn I'Anson, Director, Anxiety Recovery Centre Victoria, Kim Johnson, Carer representative, Julie Nankervis, Policy Officer, Carers Victoria, and Marie Thompson, Research and Program Officer, beyondblue. Special advisors to the project were Dr Ross King, Senior Lecturer, School of Psychology, Deakin University, and Associate Professor Michael Kyrios, Department of Psychology, The University of Melbourne. The project was funded by beyondblue: the national depression initiative.

The comprehensive data obtained through the project was made possible by 89 carers, who participated in the focus groups and interviews to share their stories, experiences and insights about living with a family member with a high prevalence disorder.

Background

This project was initiated by The Network for Carers of People with a Mental Illness in November 2001. The need to undertake research on carers of people with high prevalence disorders arose from The Network's identification of a major gap in evidence-based knowledge in this area, and the consequences of this lack of knowledge on service provision and government policy - i.e. minimal or no availability of specialist public treatment and support services (for carers, families and consumers). Organisations that assisted carers of people with high prevalence disorders reported to The Network on the difficulties and distress experienced by carers and families, which were exacerbated by the lack of understanding and recognition of their needs by the community, services and government.

A working group was established by The Network to develop a project design that would provide qualitative and quantitative data on the needs of carers and families of people with high prevalence disorders. The working group consisted of John McGrath, Julie Nankervis, Karen Elford and Kathryn I'Anson (convenor). A research project and budget were developed and a funding proposal was submitted to beyondblue in January 2002. A funding grant was approved for the first part of the project - which would explore the needs and experiences of carers and families through focus groups and interviews. The aim was to provide qualitative data that would highlight the lived experience of caring for a person with a high prevalence disorder, and form a basis for developing a questionnaire for the quantitative study (part two of the project). A formal partnership between The Network and beyondblue was then established to conduct the project as a joint venture, and the Project Management Group was set up to develop and supervise the project.

Rationale

Misperceptions and myths about the experience of people with high prevalence disorders are commonly held and mostly unquestioned by both professionals and the community. The impact and disability caused by anxiety, eating and depressive disorders on people have been trivialised by simplistic conceptual notions of these conditions - for example, that people with an anxiety disorder are the worried well, that people with depression simply need to pull themselves together and do something productive, and that people with anorexia nervosa are young girls led astray by peer pressure and fashion images.

There is now considerable scientific and clinical evidence of the marked difference between 'normal' feelings of anxiety, sadness and self-consciousness and the symptoms of the high prevalence disorders. However, these misconceptions have contributed to community and professional ignorance about these disorders and the cursory recognition given to high prevalence disorders by the mental health system, resulting in a major gap in the provision of treatment, support and crisis services for these people and their carers and families.

It is now well documented that the debilitating nature of chronic and severe anxiety, eating and depressive disorders contributes to loss of educational opportunities, employment and income for the individual affected, and increase family dysfunction. People with serious high prevalence disorders experience marked impairments in their ability to undertake many routine and life-sustaining activities. Sufferers are often housebound and isolated, and may be unable to perform major role obligations (go to work, care for children etc). People with high prevalence disorders also have a high risk of developing other mental health problems.

It is apparent from anecdotal and clinical observations, that high prevalence disorders have a major impact on families. However, the needs and experiences of carers and families of people with high prevalence disorders are not well known or understood. There is little Australian or international research that has investigated the impact on carers. Consequently, the specific services and supports needed by carers and families living with anxiety, eating and depressive disorders have received minimal consideration in service development and health policy.

Summary of Project

The purpose of the project was to undertake an in-depth qualitative analysis of the needs and experiences of carers and families of people with high prevalence disorders (anxiety, eating and depressive disorders). The project aimed to achieve better recognition for carers and families of people with high prevalence disorders and to raise the awareness of the community, service providers and government about the nature of the caring role and its impact on carers and families.

A total of eighteen focus groups were conducted with the primary carers of people with anxiety, eating and depressive disorders. The focus groups for anxiety and eating disorders were held in rural and metropolitan Victoria. The focus groups for depression were held in six capital cities of Australia - Adelaide, Brisbane, Canberra, Melbourne, Perth and Sydney. Four in-depth interviews were undertaken in rural areas of Victoria with carers of people with depression, and eleven in-depth interviews were undertaken with carers of people with anxiety and eating disorders to provide a representative population sample. A total of 89 carers participated in the study.

Five open-ended questions were asked across the groups and interviews:

  1. What were the first signs of something being wrong that you noticed?
  2. What effect has the disorder had on you emotionally, physically, socially, financially?
  3. What effect has the disorder had on your family life and family relationships?
  4. What were the difficulties and barriers in obtaining help?
  5. What do you need from health and mental health professionals and services that would help you in your caring role?

All focus groups and depth interviews were recorded, with permission given by participants, and transcriptions were made for thematic analysis. Results were analysed using the qualitative NUDIST thematic analysis program.

The research produced a wealth of qualitative data, providing a unique insight into the caring role and the impact of these disorders through the stories and descriptions related by carers and families.

Several papers were developed to present the research data. These papers included a series of background papers for each disorder that cover the impact on carers during various phases of the caring role - the detection and identification of the disorder, the experience of living with a person with the disorder, and the experience of accessing treatment and support. The background papers also include a literature review. These background papers form the basis for the development of other papers, including a research summary update and articles for journals and other publications.

The following papers from the research project have been published or are currently in press:

Eating Disorders
(Highet, N., Thompson, M., Elford, K., I'Anson, K., Nankervis, J., Johnson, K., 2004: beyondblue and The Network for Carers of People with a Mental Illness, Victoria, AUS)

Anxiety Disorders
(Highet, N., Thompson, M., I'Anson, K., Nankervis, J. ,Elford, K., Johnson, K., 2004: beyondblue and The Network for Carers of People with a Mental Illness, Victoria, AUS)

Depression
(Highet, N., Thompson, M., 2004; beyondblue, Victoria, AUS)

The main findings established by the research were that carers and families of people with high prevalence disorders experience significant and comprehensive impacts. The research showed that people with these disorders often become highly dependent upon carers (spouses, parents and children) and other family members, leading to a traumatised family system in which crises and tension in relationships are common. The symptoms of the disorders, and accessing treatment, often become the central point around which family life revolves. Physical and emotional exhaustion, chronic stress, depression and grief are commonly experienced by family members and carers may become inextricably involved in compulsive, avoidance and other symptom related behaviours. Social isolation and low self-esteem, economic losses, decreased life opportunities, and difficulties accessing effective treatment and support services all add to the pressures that carers and families experience. Most carers received limited information about their relative's illness, its management and services that can assist themselves or the person they support. Carers support groups appeared to be the sole source of support accessed.

The project findings will be used to increase the knowledge and understanding of the community, health providers and policymakers, and to bring to the attention of key government and professional bodies the full extent of the carer's role in supporting a family member with a high prevalence disorder, and the often debilitating impact on the lives of carers and families. The research findings and recommendations call for serious consideration of the needs of carers for information, support, counselling, respite, financial aid, and effective treatment services for their family member, and highlights the lack of services that are currently available to meet these needs.

The Network for Carers of People with a Mental Illness and beyondblue are currently considering the future of the project and options for progressing the quantitative stage of the research.

Kathryn I'Anson
Member, The Network for Carers of People with a Mental Illness
Director, Anxiety Recovery Centre Victoria

Prepared on behalf of The High Prevalence Disorders Project Working Group of The Network for Carers of People with a Mental Illness
Working Group members: John McGrath, Karen Elford, Julie Nankervis and Kathryn I'Anson (convenor)
August 2004

  1. The depression component of this project was incorporated into beyondblue's national research agenda, and as such included focus groups from six Australian capital cities. The depression research was primarily conducted by Nicole Highet and Marie Thompson, beyondblue, with input into the background papers from the Project Management Group. The eating and anxiety disorders components of the project investigated carer experiences only in Victoria (metropolitan and rural), and this research was undertaken by the Project Management Group (Nicole Highet, Marie Thompson, Kathryn I'Anson, Julie Nankervis, Karen Elford and Kim Johnson; Chair - John McGrath). [back]

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