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. 2023 Nov 6;22(2):234–272. doi: 10.11124/JBIES-22-00353
Study Country Methods of data collection and analysis Phenomena of interest Setting/context/culture Participant characteristics and sample size Description of main results
Culjis (2013)35 California, USA Data collection: semi-structured interviews and observations Data analysis: thematic data analysis Lived experience of older men with heart failure receiving palliative care at home Home Sample: 15 Age range: 75-95 years Diagnosis: class III/IV heart failure Central category: “living while dying”(p.101) Symptoms: maintenance and management Biding time: meaning of place, space, time, and activity Societal influences: being old with heart failure
Duggleby et al. (2010)29 Canada Data collection: in-depth, face-to-face, open-ended interviews Data analysis: theoretical coding Transition experience and psychosocial processes of rural older persons with advanced cancer receiving palliative care at home and their families Home Sample: 6 Mean age: 73 years Diagnosis: cancer “Navigating unknown waters”(p.4) Timely communication, provision of information, and support networks
Fjose et al. (2018)28 Norway Data collection: interviews Data analysis: inductive content analysis Experiences of older home-dwelling cancer patients in the palliative phase and their family with the health care system Home Sample: 26 Age range: 65-92 years Diagnosis: cancer “Non-palliative care”: health services in the palliative phase not tailored to patient and family needs Exhausting cancer follow-up Poor family involvement and fragmented care
Jack et al. (2016)31 England, UK Data collection: semi-structured interviews Data analysis: thematic analysis Older people with cancer and life-limiting conditions dying at home, and family caregiver experiences of hospice at home care Home Sample: 14 Age: 71 years and older Diagnosis: people receiving palliative care (75% cancer) “Embracing Holism” “Talking about,” “Knowing and doing,” “Caring for caregivers,” and “Promoting choice”(p.2165-8) Hospice at Home helps to support older dying persons to live well and facilitate their wish to die in their own homes.
Jo et al. (2007)27 Canada Data collection: face-to-face interviews Data analysis: coding and thematic analysis To examine the perspectives of spousal caregiver and care recipient on caregiving experience in home-based palliative care Home Sample: 10 Mean age: 73.7 years Diagnosis: cancer Care recipients acknowledged the benefits and importance of informal care provided by their spousal caregiver, but were concerned about the emotional, physical, and financial strain it had on their caregiver. Identified difficulties in communication with formal providers and poor coordination among services.
Kaasalainen et al. (2011)33 Canada Data collection: semi-structured, face-to-face interviews Data analysis: thematic content analysis Care processes experienced by community-dwelling adults dying from advanced heart failure, their family caregivers, and their health care providers Home Sample: 8 Mean age: 76 years Diagnosis: heart failure Patients described choosing interventions; living with fatigue, pain, shortness of breath, and functional decline; and their experiences with health care providers.
Kokorelias (2016)34 Canada Data collection: semi-structured interviews Data analysis: thematic analysis The lived palliative care experiences of community-dwelling older adults with dementia and their care givers Community-based palliative care Sample: 10 Age: 65 years and older Individuals with dementia who receive palliative care due to other terminal illness (cancer, diabetes, chronic obstructive pulmonary disease, congestive heart failure) Older adults with dementia experiencing palliative care in the community were belonging at home and acceptance of terminal illness.
Law (2009)30 UK Data collection: semi-structured interviews Data analysis: substantive and theoretical coding Emotional needs of dying patients in the community Community Sample: 5 Age range: 70-78 years Diagnosis: cancer Bridging worlds in which dying patients experience a dying world and an outside world, with district nurses acting as a bridge between them.
McWilliam et al. (2008)32 Canada Data collection: questionnaire semi-structured interviews field observations Data analysis: thematic analysis Sociocultural experience of home-based palliative care among older clients who are dying of cancer Home Sample: 4 Aged range: 67-75 years Diagnosis: advanced cancers Older clients receiving home-based palliative care experience a journey of “living while dying/dying while living.”(p.1)