Table 1 Characteristics of studies and FCG measures
Study | Design | Method | Country | FCG’s Sample | Variable/measures |
|---|---|---|---|---|---|
Hupcey et al. 2010 [44] | Instrumental case studies. Narrative interview | Qualitative | USA | 5 | Uncertain trajectory of HF; living with a slow decline in HF; experience of a hospice care |
Alonso et al. 2017 [45] | Descriptive interview | Qualitative and quantitative | USA | 80 | Disease severity; disease terminality |
Imes et al. 2011 [46] | Semistructured interview | Qualitative | USA | 14 | Experience of FCG with HF; experience of FCG with providers; patient's experience as perceived by partner |
Bakitas et al. 2017 [47] | Feasibility study | Quantitative | USA | 48 | Comparison between ENABLE-CHF-PC intervention in two sites for patient outcomes and FCG outcomes (BCOS, HADS anxiety and depression, physical and mental health, MBCB, stress burden and mental burden, PAC self affirmation, outlook on life) |
Buck et al. 2013 [48] | Semistructured interview | Qualitative | USA | 7 | Hospice experience and utility of the book |
Neuwirth et al. 2012 [49] | Videoethnography | Qualitative | USA | 3 | Qualitative description of utility of video in managing pts an CG (very few about FCG) |
Hupcey et al. 2011 [50] | Semistructured interview (grounded theory design) | Qualitative | USA | 45 | Financial, psychosocial, physical issues |
Retrum et al. 2013 [51] | Semistructured interview | Qualitative | USA | 17 | congruence and incongruence between dyads members |
Metzger et al. 2013 [52] | Semistructured interview | Qualitative | USA | 16 | knowledge of PC; role of PC; PC and hospice |
Schwarz et al. 2012 [53] | Retrospective collection of interviews | Qualitative | USA | 20 | Role of PC consultation |
Metzger et al. 2013 [54] | Semistructured interview | Qualitative | USA | 16 | Knowledge of PC; role of PC; conflation between PC and hospice |
Dionne-Odom et al. 2014 [55] | Two-phase formative evaluation study | Quantitative and qualitative | USA | 11 | FCG burden; QoL of FCG. Measures with scales |
Mcmillan et al. 2007 [56] | Retrospective chart review | quantitative | USA | 37 | In hospice psychosocial issues measured with CES-D |
Alonso et al. 2018 [57] | Descriptive interview | Qualitative | USA | 23 | caregiver resources, role management, caregiver-parent relationships, filial responsibility, and personal benefits and challenges |
Aldred et al. 2005 [58] | Narrative interview | Qualitative | UK | 10 | Impact on everyday life; impact on relationships patient-FCG); professional support; concern about the future; lack of time from doctors (FD and cardiologist) |
Stocker et al. 2017 [59] | Semistructured interview (grounded theory design) | Qualitative | UK | 3 | Prognosis/diagnosis; future |
Boyd et al. 2004 [60] | Semistructured interview | Qualitative | UK | 20 | Physical problems; psychosocial issues; organization of care; end-of-life |
Harding et al. 2008 [61] | Semistructured interview | Qualitative | UK | 11 | Symptoms management; future care; living without infos; barrier to communication |
Browne et al. 2014 [62] | Semistructured interview | Qualitative | UK | 20 | knowledge deficit, difficulty in accessing health and social care support, barriers to optimal care |
Ross et al. 2015 [63] | Semistructured interview | Qualitative | UK | 8 | Spiritual needs |
Leeming et al. 2014 [64] | Semistructured interview | Qualitative | UK | 12 | Social isolation; coping strategies; End-of-life worries; family roles |
Simmonds et al. 2015 [65] | Longitudinal, patient-led ethnography | Qualitative | UK | 9 | How FCG perceive living with HF and key events in illness |
Small et al. 2009 [66] | Semistructured interview | Qualitative | UK | 20 | Analysis of period prior to death; hospital staying; the bereavement |
Chester et al. 2021 [67] | Focus interview | Qualitative | UK | 4 | perceptions of referral to palliative care, key components of the new service that were deemed helpful, and unhelpful in terms of care |
Alvariza et al. 2017 [71] | Semistructured interview | Qualitative | Sweden | 14 | Impact on FCG of pts conditions; FCG state of mind and condition |
Brannstrom et al. 2007 [72] | Narrative interview | Phenomenological-hermeneutic method. Qualitative | Sweden | 4 | Responsibility of care (physical, emotional) |
Ng et al. 2017 [73] | Randomized controlled trial | quantitative | Hong-Kong | 84 | FCG burden with ZBI scale For PT QoL; symptom burden |
Kaasalainen et al. 2013 [68] | Descriptive interview | Qualitative | Canada | 7 | Living with restrictions of HF and comorbidities; decision-making about end-of-life; communication |
Schulz et al. 2017 [69] | Semi-structured interviews | Qualitative | Canada | 209 | Psychosocial aspects of death and dying |
Im et al. 2019 [70] | Descriptive interview | Qualitative | Canada | 19 | understanding of illness, uncertainty and end‐of‐life communication |
Fitzsimons et al. 2019 [74] | Descriptive interview | Qualitative | Ireland | 30 | communication with professionals, knowledge about future |