Box 1.

Definitions.

Population

Intellectual Disability ‘a developmental disability characterized by mild to profound limitations in cognitive function (e.g., learning, problem solving, reasoning, planning) and in adaptive behaviour, impairing one’s ability to acquire skills typical for one’s age group as a child or necessary for one’s later independent functioning as an adult’. 18

Serious mental illness ‘Mental illnesses resulting in serious functional impairment, which substantially interferes with or limits one or more major life activities’ 19

Personality disorders ‘Group of disorders involving pervasive patterns of perceiving, relating to, and thinking about the environment and the self that interfere with long-term functioning of the individual’ 20

Psychosis ‘an abnormal mental state involving significant problems with reality testing It is characterized by serious impairments or disruptions in the most fundamental higher brain functions—perception, cognition and cognitive processing, and emotions or affect’ 21

Schizophrenia a psychotic illness which is characterised by ‘distortions in thinking, perception, emotions, language, sense of self and behaviour. Common experiences include hallucinations (hearing voices or seeing things that are not there) and delusions (fixed, false beliefs)’. 22

Delusional disorder is ‘a psychotic illness with one or more non-bizarre persistent delusions not due to schizophrenia or substance misuse’. 23

Bipolar affective disorder ‘Bipolar I disorder, in which the individual fluctuates between episodes of mania or hypomania and major depressive episodes or experiences a mix of these: bipolar II disorder, in which the individual fluctuates between major depressive and hypomanic episodes’ 24

Depression ‘a negative affective state, ranging from unhappiness and discontent to an extreme feeling of sadness, pessimism, and despondency, that interferes with daily life. Various physical, cognitive, and social changes also tend to co-occur, including altered eating or sleeping habits, lack of energy or motivation, difficulty concentrating or making decisions, and withdrawal from social activities’. 25

Mania ‘generally, a state of excitement, overactivity, and psychomotor agitation, often accompanied by overoptimism, grandiosity, or impaired judgment’. 26

Concept

Palliative care ‘an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual’. 27 We have included both generalist and specialist palliative care services in this qualitative meta-ethnography as long as they meet the approach defined here.

Context

Palliative care provided in any setting, by any heath or social care professional (i.e. specialist or generalist services) and geographical location, to those suffering from an intellectual disability or severe mental illness.