Table 4.
Palliative care needs and themes identified.
| Domain | Theme | Individual needs | Studies | Total studies |
|---|---|---|---|---|
| Physical | Pain | Pain (including physical discomfort) | Bone et al. 22 , Brandt et al. 23 , Chan and Pang 24 , Chochinov et al. 25 , Kayser-Jones 28 , Kozlov et al. 31 , Kramer 34 , Kricke et al. 35 , Lee et al. 37 , Marcucci et al. 38 , Nicholson et al. 41 , Parker et al. 43 , Sloane et al. 45 , Strohbuecker et al. 46 , Vandenberg et al. 48 , Vohra et al. 49 | 17 |
| Function | Activities of daily living | Amblàs-Novellas et al. 20 , Beach et al. 21 , Chan and Pang 24 , Chochinov et al. 25 , Gómez-Batiste et al. 26 , Kendall et al. 30 , Lee et al. 37 , Marcucci et al. 38 , McVey et al. 40 , Österlind et al. 42 , Parker et al. 43 , Sloane et al. 45 , van den Brink et al. 47 | 13 | |
| Mobility (including falls) | Amblàs-Novellas et al. 20 , Beach et al. 21 , Chochinov et al. 25 , Gómez-Batiste et al. 26 , Kozlov et al. 31 , Lambotte et al. 36 , Lee et al. 37 , Marcucci et al. 38 , Nicholson et al. 41 , Sloane et al. 45 , Strohbuecker et al. 46 , van den Brink et al. 47 | 12 | ||
| Respiratory | Shortness of breath (including chest infections) | Bone et al. 22 , Brandt et al. 23 , Chochinov et al. 25 , Goodridge et al. 27 , Kozlov et al. 31 , Kramer 34 , Kricke et al. 35 , Lee et al. 37 , Marcucci et al. 38 , Nicholson et al. 41 , Parker et al. 43 , Sloane et al. 45 , Vandenberg et al. 48 , Vohra et al. 49 | 14 | |
| Gastrointestinal | Nutrition (lack of appetite/anorexia/dysphagia) | Amblàs-Novellas et al. 20 , Brandt et al. 23 , Chan and Pang 24 , Chochinov et al. 25 , Gómez-Batiste et al. 26 , Goodridge et al. 27 , Kayser-Jones 28 , Kayser-Jones et al. 29 , Kramer 34 , Lee et al. 37 , Marcucci et al. 38 , Nicholson et al. 41 , Parker et al. 43 , Sloane et al. 45 | 14 | |
| Continence (including urinary tract infections and diarrhoea) | Amblàs-Novellas et al. 20 , Chochinov et al. 25 , Goodridge et al. 27 , Kramer 34 , Lee et al. 37 , Parker et al. 43 , Sloane et al. 45 , van den Brink et al. 47 , Vohra et al. 49 | 9 | ||
| Constipation | Chochinov et al. 25 , Kayser-Jones 28 , Kramer 34 , Nicholson et al. 41 , Parker et al. 43 | 5 | ||
| Nausea and vomiting | Chochinov et al. 25 , Parker et al. 43 | 2 | ||
| Cognitive | Dementia, agitation, restlessness, delirium, confusion, and level of consciousness | Amblàs-Novellas et al. 20 , Chochinov et al. 25 , Gómez-Batiste et al. 26 , Kayser-Jones 28 , Kramer 34 , Lee et al. 37 , Marcucci et al. 38 , Parker et al. 43 , Strohbuecker et al. 46 , van den Brink et al. 47 , Vandenberg et al. 48 | 11 | |
| Other physical concerns | Hygiene (including skin care and oral care) | Amblàs-Novellas et al. 20 , Gómez-Batiste et al. 26 , Goodridge et al. 27 , Kayser-Jones 28 , Kayser-Jones et al. 29 , Kramer 34 , Lee et al. 37 , Parker et al. 43 , Sloane et al. 45 | 9 | |
| Lack of energy (including tiredness, fatigue, and trouble sleeping) | Chochinov et al. 25 , Kayser-Jones 28 , Kozlov et al. 31 , Lee et al. 37 , Marcucci et al. 38 , Nicholson et al. 41 , Parker et al. 43 | 7 | ||
| Practical | Future planning | Personal affairs (including advance care planning and planning death affairs) | Bone et al. 22 , Brandt et al. 23 , Kendall et al. 30 , Kozlov et al. 31 , Kramer 34 , Lee et al. 37 , Marcucci et al. 38 , McVey et al. 40 , Nicholson et al. 41 , Österlind et al. 42 , Sloane et al. 45 , Strohbuecker et al. 46 , Vandenberg et al. 48 , Vohra et al. 49 , Braun and Clarke 50 | 15 |
| Informational needs | Beach et al. 21 , Bone et al. 22 , Brandt et al. 23 , Kozlov et al. 31 , Lee et al. 37 , Marcucci et al. 38 , Nicholson et al. 41 , Vandenberg et al. 48 | 8 | ||
| Financial needs | Brandt et al. 23 , Kayser-Jones 28 , Marcucci et al. 38 , Nicholson et al. 41 , Sloane et al. 45 , Strohbuecker et al. 46 , van den Brink et al. 47 | 7 | ||
| Environmental needs (adaptations/housing/mobility aids/sensory loss) | Beach et al. 21 , Kayser-Jones et al. 29 , Kramer 34 , Lambotte et al. 36 , Mason et al. 39 , Parker et al. 43 , Strohbuecker et al. 46 , van den Brink et al. 47 , Vohra et al. 49 | 9 | ||
| Person-centred care | Lack of care continuity-across services and/or in-house (including discharge) | Amblàs-Novellas et al. 20 , Bone et al. 22 , Brandt et al. 23 , Goodridge et al. 27 , Kayser-Jones 28 , Kramer 34 , Kricke et al. 35 , Lee et al. 37 , Marcucci et al. 38 , Mason et al. 39 , Strohbuecker et al. 46 | 11 | |
| Availability of resources | Beach et al. 21 , Chan and Pang 24 , Kayser-Jones 28 , Kayser-Jones et al. 29 , Kendall et al. 30 , Kozlov et al. 31 , Lee et al. 37 , Marcucci et al. 38 , Vohra et al. 49 | 9 | ||
| Lack of specialist care/responsive care/professionals skilled in end of life care | Amblàs-Novellas et al. 20 , Bone et al. 22 , Kayser-Jones 28 , Marcucci et al. 38 , Vohra et al. 49 | 5 | ||
| Medications management | Beach et al. 21 , Kramer 34 , Mason et al. 39 , van den Brink et al. 47 | 4 | ||
| Wasted time | Brandt et al. 23 , Marcucci et al. 38 | 2 | ||
| Psychological | Unhappiness | Emotional distress (including hopelessness) | Amblàs-Novellas et al. 20 , Brandt et al. 23 , Chan and Pang 24 , Chochinov et al. 25 , Gómez-Batiste et al. 26 , Goodridge et al. 27 , Kayser-Jones 28 , Kendall et al. 30 , Kozlov et al. 31 , Marcucci et al. 38 , McVey et al. 40 , Sloane et al. 45 , van den Brink et al. 47 , Vandenberg et al. 48 | 14 |
| General dissatisfaction with life/loss of independence | Chochinov et al. 25 , Kendall et al. 30 , Kozlov et al. 31 , Lambotte et al. 36 , Marcucci et al. 38 , Österlind et al. 42 , Parker et al. 43 , Strohbuecker et al. 46 | 8 | ||
| Anxiety | Anxiety | Brandt et al. 23 , Chochinov et al. 25 , Goodridge et al. 27 , Kayser-Jones 28 , Kozlov et al. 31 , Kramer 34 , Kricke et al. 35 , Lee et al. 37 , Marcucci et al. 38 , Nicholson et al. 41 , Parker et al. 43 , Vandenberg et al. 48 | 12 | |
| Anxiety/conflicts related to relationships with family | Brandt et al. 23 , Chochinov et al. 25 , Kozlov et al. 31 , Kramer 34 , Marcucci et al. 38 , Strohbuecker et al. 46 | 6 | ||
| Loneliness | Loneliness/isolation/being ignored | Goodridge et al. 27 , Kayser-Jones 28 , Kayser-Jones et al. 29 , Kendall et al. 30 , Kozlov et al. 31 , Lambotte et al. 36 , Österlind et al. 42 , Parker et al. 43 , Strohbuecker et al. 46 , Vandenberg et al. 48 | 10 | |
| Social | Staying socially connected | Social connection and activity for an elder with family and others (social support/isolation/loneliness) | Beach et al. 21 , Brandt et al. 23 , Chochinov et al. 25 , Kendall et al. 30 , Kozlov et al. 31 , Lee et al. 37 , Marcucci et al. 38 , Nicholson et al. 41 , Österlind et al. 42 , Parker et al. 43 , Sloane et al. 45 , Strohbuecker et al. 46 , van den Brink et al. 47 , Vandenberg et al. 48 | 14 |
| Need for help for an elder on their own/with no carer | Lambotte et al. 36 , Mason et al. 39 | 2 | ||
| Maintaining personhood and identity | Social identity/to be respected | Chochinov et al. 25 , Goodridge et al. 27 , Kendall et al. 30 , Kricke et al. 35 , Österlind et al. 42 , Strohbuecker et al. 46 , van den Brink et al. 47 , Vohra et al. 49 | 8 | |
| Trust in carers | Need for relational trust and safety with statutory carers (for elder) | Bone et al. 22 , Chochinov et al. 25 , Kayser-Jones 28 , Kramer 34 , Kricke et al. 35 , Lee et al. 37 , Österlind et al. 42 , Strohbuecker et al. 46 | 8 | |
| Need for relational trust and safety with statutory carers (for a family member) | Bone et al. 22 , Chochinov et al. 25 , Kayser-Jones 28 , Kramer 34 , Lee et al. 37 , Vohra et al. 49 | 6 | ||
| Family support | Need for the family to be identified as part of the care team and supported | Bone et al. 22 , Kramer 34 , Lambotte et al. 36 , Lee et al. 37 , Mason et al. 39 , Nicholson et al. 41 , Sloane et al. 45 , Vohra et al. 49 | 8 | |
| Need for help with family conflict(s) (for elder/between professionals and family) | Kozlov et al. 31 , Lee et al. 37 , Parker et al. 43 , van den Brink et al. 47 | 4 | ||
| Spiritual | Meaning and purpose | Need to discuss and/or reconcile the nature of existence (existential distress) | Chan and Pang 24 , Chochinov et al. 25 , Goodridge et al. 27 , Kramer 34 , Lee et al. 37 , Nicholson et al. 41 , Österlind et al. 42 , Sloane et al. 45 , Strohbuecker et al. 46 | 9 |
| Need for meaning and purpose (meaningful activities) | Brandt et al. 23 , Chan and Pang 24 , Chochinov et al. 25 , Kayser-Jones 28 , Kozlov et al. 31 , Lee et al. 37 , Marcucci et al. 38 , Österlind et al. 42 | 8 | ||
| Need to understand the importance of an individual’s sense of identity (cultural practices and beliefs at end of life) | Chochinov et al. 25 , Kayser-Jones 28 , Kendall et al. 30 , McVey et al. 40 , Österlind et al. 42 , Strohbuecker et al. 46 , Vohra et al. 49 | 7 | ||
| Grief and loss | Need to recognise grief, loss, and deterioration | Chochinov et al. 25 , Kayser-Jones 28 , Kendall et al. 30 , Kramer 34 , Lee et al. 37 , Österlind et al. 42 , Parker et al. 43 , Strohbuecker et al. 46 | 8 | |
| Religiosity and religious preference | Need to recognise religion and/or religious preferences | Kayser-Jones 28 , Kramer 34 , Kricke et al. 35 , Lee et al. 37 , Parker et al. 43 , Strohbuecker et al. 46 , Vohra et al. 49 | 7 | |
| Living well in the present | Need for acceptance of living as well as possible in the present | Chochinov et al. 25 , Mason et al. 39 , Strohbuecker et al. 46 | 3 |