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Clinical guidance for responding to suffering in adults with cancer

Glossary

Anticipatory grief – Describes the grieving process experienced by someone prior to a loss actually occurring.

Art therapy – Used to help patients manage physical and emotional problems by using creative activities to express emotions and concerns.

Body-mind-spirit therapy – Focuses on developing a positive view of suffering from cancer as an opportunity for a healthy lifestyle based on the interrelationships between body, mind and spiritual wellbeing and purpose and meaning in life.

BDI - Becks Depression Inventory.

BHS - Becks Hopelessness Scale.

Burnout – Ascribed condition of physical, mental and emotional exhaustion experienced by a healthcare professional that may potentially lead to dysfunction.

Cancer continuum – Describes the course of illness experience by those with cancer, that may encompass the stages from the initial diagnosis to the treatment, survivorship and end of life care for cancer patients.

Chaplain – is a form of professional pastoral minister requiring the skills to provide pastoral, religious and spiritual care in a range of diverse healthcare settings (or in other contexts, such as schools, universities, or prisons).

Clinical depression – Intense feelings of sadness, reduced ability to experience pleasure and very low mood for longer than two weeks in duration.

Cognitive behavioural therapy – A form of psychotherapy that helps patients change their behaviour by altering the way they think about certain things. It is used to treat mental, emotional, personality, and behavioural disorders.

Cognitive-behavioural stress management – A type of stress reduction intervention often in a group setting that may involve a variety of cognitive-behavioural strategies such as meditation, relaxation and interpersonal communication that recognises and alters responses to negative thoughts.

Distress – Emotional, mental, social or spiritual suffering. Distress may range from feelings of vulnerability and sadness to stronger feelings of depression, anxiety, panic and isolation.

Early-stage cancer – The initial stages of cancer growth that usually have not spread to distal parts of the body.

Existential distress – Feelings of hopelessness, burden to others, loss of sense of dignity or self-identity, and in some cases, desire for death or loss of will to live.

Existential issues – Issues that derive from feelings of isolation, death, desire for meaning and purpose in one’s life.

EWS - Existential Well-Being Scale.

FACIT – Functional Assessment of Chronic Illness Therapy.

HADS – Hospital, Anxiety and Depression Scale.

HDRS - Hamilton Depression Rating Scale.

HOPES - Hunter Opinions and Personal Expectations Scale.

Haptotherapy intervention – The use of touch to enhance the physical and emotional wellbeing of a patient.

Holistic care – Care that incorporates different types of therapies and services to ensure that the patient’s physical, emotional, spiritual and practical needs are met.

Hope-centred intervention – Designed to enhance aspects of hope in patients with cancer delivered by both individual and group interactions.

LGBT- is an acronym that stands for lesbian, gay, bisexual, and transgender.

Imam – A religious leader belonging to the religion of Islam.

Loss of dignity – A symptom of suffering that describes the inability to value the meaning and purpose in one’s life.

Loss of meaning – Belief that life is no longer worth living; describes feelings of loss of meaning, purpose and role in one’s life.

McGill QOL - McGill Quality of Life Scale.

Meaning-centred intervention – Designed to build and sustain meaning and spirituality into end–of-life care for patients with advanced cancer. Interventions may include therapist-guided life review (i.e. life review and dignity therapy), individual psychotherapy focusing on meaning, and meaning-centred group psychotherapy.

Meaning in life - Presence – This measures the presence of meaning in someone’s life, i.e. how much people feel their lives have meaning.

Meaning in life - Search – This measures the people’s search for meaning, i.e. how much they strive to find meaning and understanding in their lives.

Multicultural liaison officer – Person whose role is to increase the connectedness between a patient and their respective healthcare team.

Meditation – The action or practice of focusing on body movements and breathing to increase one’s awareness of the present moment, alleviate stress and promote relaxation.

Mindfulness based therapy – Promotes the concept of being “mindful,” and heightened awareness of the present. Employs practices to relax the body and mind to counteract stress.

Multidisciplinary care – A team approach to cancer treatment and planning.

Multidisciplinary team (MDT) – A comprehensive team of healthcare professionals that may consist of but is not limited to palliative care specialists, psychiatrists, psychologists, counsellors, dieticians, physiotherapist, pain specialists, speech pathologists, occupational therapists, hospital liaison officers and social workers.

Music thanatology – Delivered by a specially trained harpist who provides music in palliative care settings, often using the harp.

Music therapy – The use of music by healthcare professionals to promote quality of life and healing for patients.

NHS - Nowotny Hope Scale.

Non-verbal cue – An intangible or tangible indicator conveyed without speech that provides emotional or other information about a person, for example, body language, facial expression or non-verbal noise (intangible), or dress or jewellery (tangible).

Pain specialist – A health professional who specialises in the treatment and alleviation of pain and associated symptoms.

Palliative care – An approach that improves the quality of life of patients and their families facing problems associated with a life-threatening illness. Involves the treatment of physical, psychosocial and spiritual aspects of wellbeing.

Palliative care specialist – A health professional who specialises in the management but not the curing of pain for those with a serious or life-threatening disease.

Pastoral care – a person providing patient-centred, holistic approach to care that complements the care offered by other helping disciplines while paying particular attention to spiritual care. It focuses on empowering people in whatever situation they find themselves.

Patient-centred model of care – Innovative approach to the planning, delivery, and evaluation of health care that focuses on mutually beneficial partnerships among healthcare providers, patients, and families.

PHQ - Patient Health Questionnaire.

Premature reassurance – Reassurance delivered by a healthcare professional that is interpreted as dismissive and unhelpful by the patient that lacks empathy on the doctor’s behalf.

Priest – An ordained minister of the Catholic, Orthodox, or Anglican Church who has the authority to carry out sacred rituals specific to a religion.

Psychiatrist – A medical doctor who specialises in the prevention, diagnosis, and treatment of mental, emotional, and behavioural disorders.

Psycho-educational intervention – Behavioural interventions designed to maintain and improve quality of life, including psychological, physical, social, and spiritual wellbeing, through repeated sharing of key information.

Psychologist – A health professional who can discuss emotional and personal matters with a patient and their family and can help with making decisions to promote their wellbeing.

Psychometric property – A measure of the appropriateness, reliability and validity of a tool (eg used to assess suffering) used to evaluate an outcome or a construct.

Psychosocial – Treatment that is intended to address psychological, social and some spiritual needs.

Quality of life – An individual’s overall appraisal of their situation and subjective sense of wellbeing. Quality of life encompasses symptoms of disease and side effects of treatment, functional capacity, social interactions and relationships, and occupational functioning.

Recurrence – Cancer that has come back after treatment.

Risk factors – Variables that increase someone’s chance of developing a disease such as cancer, some of which are modifiable (e.g. lifestyle) and others which aren’t (e.g. gender).

Rabbi – A religious leader belonging to the religion of Judaism.

Relaxation – A form of therapy where emphasis is put on teaching the patient how to relax both mentally and physically, and to control breathing, with the aim of reducing emotional distress, and improving control of symptoms such as anxiety or pain.

Self-transcendence – One’s ability to overcome personal issues and adversity to enhance broader life perspectives.

SAHD - Schedule of Attitudes Toward Hastened Death.

SOC - Sense Of Coherence

Spiritual care – Care focused on the religious and spiritual needs of a patient and their family to address existential issues and meaning and purpose in life.

Spiritual distress – Disruption in the life principle that pervades a person’s entire being, which may cause someone to express concerns about the meaning of life and death, the meaning of suffering or one’s own existence, and to seek spiritual assistance.

Spirituality – Having to do with deep, often religious, feelings and beliefs, including a person’s sense of peace, purpose, connection to others, and beliefs about the meaning of life. Spirituality is subjective and can be expressed in many unique ways.

Suffering – Physical, psychological, social and spiritual reactions that may encompass demoralisation; existential distress, existential suffering or existential pain; psycho-spiritual distress; psycho-existential suffering; spiritual pain; and total pain.

Spiritual care practitioner – is a board term used to refer to practitioners that are appointed and recognised as the specialist in the provision of spiritual care. The practitioner may be paid or unpaid, providing spiritual care to individuals through person-centred, relational, supportive and holistic care - seeking out and responding to expressed spiritual needs. This may include managing requests from an individual for a faith representative of their choice.

Spiritual intervention – Designed to address the spiritual concerns of patients by incorporating an explicitly spiritual component to elevate feelings of hope, happiness, life satisfaction and health.

Spitzer QLI - The Spitzer Quality of Life Index.

Stage – The extent of a cancer and whether the disease has spread from an original site to other parts of the body.

Stress reduction intervention – designed to help enable people to manage different stressors by helping them develop a conscious awareness (i.e. mindfulness) of their behaviour, emotions and responses in a non-judgemental and accepting manner.

Supportive care – Improving quality of life for people with cancer from different perspectives, including physical, social, emotional, financial and spiritual.

Supportive-expressive intervention – Encompass both supportive group and individual therapy designed to enhance overall Quality of Life.98 Interventions may include individually-delivered telephone therapy, forgiveness therapy, face-to-face and telephone delivered support groups.

Support group – A group of individuals with a common experience who meet regularly, often with a leader to guide the discussion, to provide support and emotional caring for each other. Groups may be organised through hospitals, cancer control organisations or by individuals. Group members include patients and/or partners and carers. Other components of support may include provision of practical or material aid, information, guidance, feedback and validation of the individual’s stressful experiences and coping choices.

Survivorship phase – In cancer, survivorship focuses on the health and life of a person with cancer beyond the diagnosis and treatment phases. Survivorship includes issues related to follow-up care, late effects of treatment, second cancers, and quality of life. Family members, friends, and caregivers are also part of the survivorship experience.

Tai chi – A Chinese derived exercise that utilises breathing, visualisations and movements to enhance overall wellbeing.

Terminal illness – Diagnosis of an incurable disease that will ultimately lead to death.

Working Group consensus – Endorsement of a specific statement (or information) by a multidisciplinary working group of clinical experts and consumers, in the absence of direct supporting evidence.

Yoga – A practice with Hindu origins that aims to bring the body, mind and spirit into a state of tranquillity and peacefulness through gentle and controlled body movements.

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