Table 2.

Tabulation of Articles with Emerging Concepts of Experiences and Preferences

Study	Sample	Research findings	Concepts for experience	Concepts for preference
Almack et al.35	18 cases made of patients, relatives, and healthcare professionals; 9 patients with cancer, 4 with heart failure, 2 with multiple sclerosis, and 3 with stroke and comorbidities	Reluctance to discuss end-of-life issues; assumption that healthcare professionals will initiate the conversations; professionals hesitant to initiate the conversations as they perceived this as taking away the patient's hope	No end-of-life discussions	Healthcare professionals to initiate end-of-life discussions
Barling et al.29	26 informal carers who had experienced the death of an adolescent or young adult with cancer	Negative impact of hospitalization; importance of place and space; treatment environment not appropriate for adolescents and young adults; hospital environment not conducive to healing; young adults do not fit within system; hospitalization is like a death sentence	Confinement of hospitalization; space not conducive to healing; not fitting in	Age-appropriate environment
Brom et al.37	28 advanced care patients	Desire for doctor to play a role in decision-making process; considered doctor's expertise, knowledge, and experience in treatment decisions; other patients want to participate in decisions; other patients preferred the physicians to play a decisive role; others wanted to maintain control by having a more decisive role; role in decision-making changed with the fluctuating status of illness and aim of the treatment; want more active role when disease progressed	Involvement in decision-making	Doctors to share expert voice; desire to maintain control
Cataudella and Zelcer32	24 bereaved parents of children diagnosed at less than 18 years of age with a brain tumor	Emotional and cognitive changes; awareness of death; desire to be treated as normal; to remain connected with others; and post-traumatic growth	Emotional changes; cognitive changes;	Normalcy; connection with others
Dahlin and Heiwe33	17 patients with advanced cancer	Physical therapy clear and satisfactory; therapists viewed as good listeners; may feel a burden; time-limited improvement; lack of information; independence is important for patients; preserve autonomy	Confidence from therapy	Independence; control; assistance to gain motivation
Doumit et al.25	10 patients. Lived experience of cancer between 2–21 years	Distress from being dependent; dislike of pity; worry for family and family worry; reliance on God and divinity; dislike of hospital; need to be productive; fear of pain; need to communicate	Distress; worry for others; pain	Rely on God; being productive
Gaab et al.34	19 primary caregivers of a child receiving palliative care aged 3–18 years	Support from family both physically and emotionally; support with decision-making aspects; feelings of regret and blame; parental roles; disability discrimination; use of the internet to seek and offer help	Support from family/friends; feelings of regret; blame; disability discrimination	Use of internet; need for information
Hoff et al.45	12 patients; 7 with malignant hematological disease, 5 with nonoperable lung cancer	Well informed initially; less information with disease progression; information dependent and accepting of the news; information dependent but denying; medically informed and accepting and medically informed but denying	Less information with disease progression; information dependent; acceptance; denial; medically informed	Need information on bad news
Milberg et al.28	12 patients, and 14 unconnected informal carers	Palliative home care as a secure based; having a sense of control; experiencing inner peace; having trust in the staff; being recognized as an individual; family being relieved of the burden of responsibility being informed, feeling welcome; and the ability to continue with everyday life at home; loss of self; loneliness; death anxiety	Security; death anxiety	Security; a sense of control
Montel et al.42	38 parents of adolescents and young adults aged 15–25 who died at Institut Curie	Children aware of imminent death; obstacles to talking about death; regrets of not talking about dying; parents concerned about child's place of death and home care; need for psychological support; none of the parents used the bereavement services after the child's death	Representation of death; awareness of death; not talking about dying; feelings of regret	Need for information; psychological support; bereavement support
Philip et al.31	10 patients with primary malignant glioma grade 3–4	Loss of self; feelings of vulnerability; fear of being a burden to others; feelings of loneliness and isolation; lack of openness by healthcare professionals; all about waiting and uncertainty	Uncertainty; lack of openness from professionals; being a burden
Rydahl-Hansen24	12 patients with incurable cancer with a Folstein's Mini-Mental State Examination score of 24 points or more, born in Denmark by Danish parents	Suffering from increasing powerlessness; loneliness and isolation; struggle to maintain or regain control	Increasing powerlessness; loneliness; isolation; control	Maintain control
Sand et al.27	15 patients with advanced incurable cancer and a short life expectancy	Fear of losing control; worry and confusion over medication; fear of becoming addicted to medication; gain control by not taking medication; patients wanted to self-manage rather than comply	Loss of control	Self-management; shared decision-making with professionals
Nedjat-Haiem36	9 triads of patient, informal carer, and provider, and one patient–provider pair	Lacking understanding of severity of illness; hope to be cured; end-of-life discussions deferred by professionals; patients informed of progression at time of crisis; gaps in end-of-life communication; omission of vital information	Hope; severity of illness; gaps in communication	Open and honest communication; information on prognosis
Nilmanat et al.23	15 patients with life expectancy of less than 6 months	Living with suffering; distress caused by physical symptoms; alienation; sense of worthlessness, sense of being a burden to others; a desire to hasten death	Living with suffering; being a burden; alienation	Desire to hasten death
Volker and Wu 26	20 patients with advanced cancer	Wanting control; higher power exists with overall control of cancer and death	Control; belief in higher power	Control of everyday life; involvement in treatment decisions
Worth et al.30	32 patients with advanced cancer; ranged from those receiving palliative treatment to the terminally ill	Reluctance to call out of hours services; anxiety about the importance of their need; did not want to bother the doctor; perceived triage as a blockade to access to care; received effective planning; empathic responses from staff	Effective planning; triage as blockade to care	Effective planning; confidence to access care; empathic professionals
Williams40	33 outpatients from an oncology clinic of a public hospital aged 20–70+	Terminal illness career; changes of inner self; changes in outer interactions; Emotional labor; managing own and others feelings	Emotional labor; external physical changes	Normalcy; maintain interactions; social networks