A Literature Review on the Experience of Long-Term Mental Illness

Purpose To illuminate long-term experiences of mental illness from both research and autobiographical accounts. Design A literature review of English-language papers, 1950-2014, relating to the experience of long-term mental illness indexed in Ageinfo, AMED, ASSIA, British Nursing Index (BNI), CINAHL, MEDLINE, Psychextra and PsychInfo. Findings Twenty-five research papers and nine autobiographic accounts met the review criteria. All research papers were cross-sectional studies. Thematic analysis revealed nine themes: fear, explanation seeking, stigma, disability, coping strategies, control, support, change and learning, and life history. Specific gaps of note relate to age differences, acknowledgement of longevity of mental illnesses, and different cultural perspectives. Research implications There is an absence of longitudinal studies focused on experiences of long-term mental illness. The considerable length of time implicated in the experiences suggests that more individual life experience rather than illness focused studies are needed, enabling a holistic understanding. This includes studies from cultures other than the western world. Greater transparency is needed in justifying age inclusions or passive exclusion of older peoples’ perspectives. Practical implications Knowledge of long-term mental illness experiences is of great importance to mental health practitioners. Evidence based services cannot be provided if we do not have an holistic understanding of long term mental illness. The experience of older people in particular is not well understood due to the lack of evidence available. Social implications This review questions our ability to provide effective support when there is such a lack of evidence about the experience of long-term mental illness, in particular in relation to older people and different cultural perspectives Originality/value There appear to be no literature reviews that focus on the individual experience of long-term mental illness. It highlights the surprisingly small number of research studies available to inform mental health practitioners.

Purpose
To illuminate long-term experiences of mental illness from both research and autobiographical accounts.
Design
A literature review of English-language papers, 1950-2014, relating to the experience of long-term mental illness indexed in Ageinfo, AMED, ASSIA, British Nursing Index (BNI), CINAHL, MEDLINE, Psychextra and PsychInfo.
Findings
Twenty-five research papers and nine autobiographic accounts met the review criteria. All research papers were cross-sectional studies. Thematic analysis revealed nine themes: fear, explanation seeking, stigma, disability, coping strategies, control, support, change and learning, and life history. Specific gaps of note relate to age differences, acknowledgement of longevity of mental illnesses, and different cultural perspectives.
Research implications
There is an absence of longitudinal studies focused on experiences of long-term mental illness. The considerable length of time implicated in the experiences suggests that more individual life experience rather than illness focused studies are needed, enabling a holistic understanding. This includes studies from cultures other than the western world. Greater transparency is needed in justifying age inclusions or passive exclusion of older peoples’ perspectives.
Practical implications
Knowledge of long-term mental illness experiences is of great importance to mental health practitioners. Evidence based services cannot be provided if we do not have an holistic understanding of long term mental illness. The experience of older people in particular is not well understood due to the lack of evidence available.

Social implications
This review questions our ability to provide effective support when there is such a lack of evidence about the experience of long-term mental illness, in particular in relation to older people and different cultural perspectives

Originality/value
There appear to be no literature reviews that focus on the individual experience of long-term mental illness. It highlights the surprisingly small number of research studies available to inform mental health practitioners.

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