Table 4 Main findings on FCGs’ experience and needs by setting and provider of care
Study | Place of care | Team members | Main findings about FCGs experience | Main experience topics |
|---|---|---|---|---|
Hupcey et al. 2010 [44] | Home care | Cardiologist | FCGs not prepared, did not understand the end was near; responsibility of care, financial and emotional strain of the experience; relief and sadness waiting for the death | Worries and plans for the future; Financial aspects; Psychological issues |
Imes et al. 2011 [46] | Home care | Cardiologist | Experience: Negative impact on daily relationship with patients (not going out as usual, stress and challenge in everyday life, avoid discussion on future, sometimes more communication between partners), impact on FCGs (emotional impact, change in routine, FCGs helped by thinking of themselves); lack of information exchange between FCGs and providers (little information on prognosis and confusion); FCGs see patients negatively approaching the end-of-life (struggle with symptoms, living day-to-day with uncertainty, not talking about death, no advanced care planning, always hoping for the best, some not caring about the future) Expectations: have more info to prepare for the future, on disease, symptoms | Relationship with professionals or services; impact of patients’ condition on FCGs |
Fitzsimons et al. [74] | Home care | Cardiologist | Experience: poor communication with professionals and little understanding of the future, living with uncertainty; lack of service provision and understanding of PC services. Negative feelings about living with their loved ones, fear, loneliness, sadness; their loved ones’ complaints about dying alone | Psychological issues; Relationship with professionals or services; Worries and plans for the future; Impact of patients’ condition on FCGs; Relationship with patients; Role of PC |
Leeming et al. 2014 [64] | Home care | Cardiologist, Family doctor | Experience: isolation leads to psychosocial problems in FCGs; pivotal role of religious support; lack of knowledge about future; FCGs worry about health of patient and vice versa; lack of communication about fears or overprotection | Psychological issues; Impact of patients' condition on FCGs |
Aldred et al. 2005 [58] | Home care | Cardiologist, Family doctor, nurse | Experience: Isolation in home, activities curtailed; FCGs key role in physical and emotional support, struggle and frustration with coping with patient needs, FCGs have their own physical problems; lack of time from doctors (Family Doctor and cardiologist); preoccupation and fear about the future Expectations: Need more time to talk with doctors, need to discuss disease, future and prognosis | Relationship with professionals or services; Impact of patients’ condition on FCGs; |
Stocker et al. 2017 [59] | Home care | Cardiologist, Family doctor, nurse | Experience: unclear understanding of diagnosis, no willingness to know prognosis; talk about death in general terms; uncertainty of future but looking at improvements in future | Worries and plans for the future |
Simmonds et al. 2015 [65] | Home care | Cardiologist, Family doctor, nurse | Experience: fragmented management, lack of continuity; lack of nurse services in the community; difficulty in contacting the hospital; lack of communication about prognosis and future | Relationship with professionals or services |
Bakitas et al. 2017 [47] | Home care | Cardiologist, nurse | Experience: improvements in BCOS, HADS-depression, global mental health and MBCB score | Psychological issues |
Retrum et al. 2013 [51] | Home care | Cardiologist, nurse | Experience: congruence in end-of-life issues, in planning for the future, managing illness for some dyads and incongruence for others. Incongruence in self-care. Absence of communication between patients and FCGs. Incongruence associated with distress and tension, congruence with solidarity. Dyads involving a spouse or partner had more emotional investment. Older couple means higher level of acceptance Expectations: need of a care team | Relationship with patients |
Alonso et al. 2018 [57] | Home care | Cardiologist, nurse | Experience: feel alone, difficulties in caring for their loved ones and for themselves, they sacrifice their life for them, lack of time for their activities. Positive effect on FCGs’ style of life, healthy behavior, no smoking etc Expectancies: needs for every day support for life and spiritual needs | Psychological issues; Impact of patients’ condition on FCGs; Relationship with patients |
Schulz et al. 2017 [69] | Home care | Cardiologist, palliative physician, Family doctor, nurse, other specialists, social worker | Experience: avoid talking about death, frustration and sadness, but at the same time FCGs understand and accept it | Psychological issues |
Schwarz et al. 2012 [53] | Home care | Cardiologist, palliative physician, Family doctor, nurse, social worker | Experience: pain and anxiety improved, less use of opioids; increased clarity about treatments; improved management | Psychological issues Relationship with professionals or services; |
Harding et al. 2008 [61] | Home care | Cardiologist, palliative physician, nurse | Experience: confusion of HF and symptoms; no discussion about future; anxiety, anger and confusion experienced by patients and perceived by FCGs; not easy to talk with doctors (too busy) Expectations: need to know more about future; easy language that can be understood; family conferences with staff, provide a support group or phone line | Relationship with professionals or services; Worries and plans for the future; Relationship with patients |
Ng et al. 2017 [73] | Home care | Cardiologist, palliative physician, nurse | Experience: focus on physical and emotional health, social life, financial status, and the relationship between caregiver and patient. Significant decrease of burden in control group | Psychological issues; Relationship with patients; Financial aspects |
Im et al. [70] | Home care | Cardiologist, palliative physician, nurse, social workers | Experience: good awareness of illness management, lack of awareness about future, no talking about death, not engaged in end of life discussion | Relationship with professionals or services; Worries and plans for the future; Impact of patients’ condition on FCGs; Relationship with patients |
Ross et al. 2015 [63] | Home care | Cardiologist, palliative physician, nurse, volunteers, chaplain | Experience: struggle for incongruence of view about medications and general issues; feeling isolated; importance of support from religious leaders Expectations: creating care co-ordinator, voluntary organizations, support groups, home visiting services. Link with chaplaincy team in hospital | Psychological issues |
Hupcey et al. 2011 [50] | Home care | Nurse | Experience: financial matters like lost work/absence from work, cost of travel for visits, medication expenses; psychosocial issues like family conflict increase, role change; physical issues like unaddressed medical needs, stress, health problem for FCGs Expectations: easily understandable information regarding treatment options, advanced directives, future planning | Psychological issues; Financial aspects |
Brannstrom et al. 2007 [72] | Home care | Nurse, physioterapist | Experience: Feeling secure through getting help and support from the team members, tailored-care at home to manage everyday life; feeling isolated at home, physically burdened, burdened by responsibility, constantly worried; anxiety and uncertainty Expectations: being consoled for loved one’s suffering, relief in meeting someone (team) to share and ease their burden | Psychological issues; |
Neuwirth et al. 2012 [49] | Home care | Nurse, social worker, pharmacist | Experience: helpful communication between patients, caregiver and healthcare providers; video effective in reducing re-hospitalization | Reletionship with professionals or services |
Boyd et al. 2004 [60] | Home care | Palliative physician, Family doctor | Experience: comorbidities as a huge problem, frustration conveyed to carers; low mood and anxiety; carer left alone and not recognized as a key figure; passive role in decision-making; difficulty in decision due to uncertainty of prognosis and difficulty in discussing it Expectations: home visiting, better coordination in hospital; extending the role of PC services | Psychological issues; Impact of patients’ condition on FCGs |
Dionne-Odom et al. 2014 [55] | Home care | Palliative physician, nurse | Experience: FCGs burned out; intervention helped but many already know how to manage things; helpful to have a nurse coach; Expectations: intervention would be better earlier | Psychological issues; Impact of patients’ condition on FCGs Relationship with services/profess |
Mcmillan et al. 2007 [56] | Hospice | Cardiologist, palliative physician, nurse, social worker | Experience: little social support; some carers expressed depressive symptoms Expectations: more focus on depressive symptoms | Psychological issues; Impact of patients’ condition on FCGs |
Buck et al. 2013 [48] | Hospice | Palliative physician, nurse | Experience: informative tools are perceived as useful to understand things for those with few weeks of caregiving, useless for long stays; useful for diagnosis; hospice (with nurses) as a solution to solve everyday problems and to focus on spiritual issues Expectations: identify specific groups of FCGs (newer, hospice FCGs); offering the intervention earlier; discussing symptom management in a multimorbid setting | Relationship with professionals or services Role of pc |
Metzger et al. 2013 [52] | Hospital | Cardiologist, palliative physician | Experience: unprepared for PC consult, no previous understanding of PC; suspicion, caution; PC was welcomed for those who know; general positive effect of PC team; role of support for PC emotional state and for managing care, meetings, obstacles, providing information; Conflation of PC and hospice as a barrier to PC | Relationship with professionals or services; Role of PC |
Browne et al. 2014 [62] | Hospital | Cardiologist, palliative physician, Family Doctor, nurse, other specialists, pharmacist | Experience: poor understanding of treatments; PC and hospice only for few patients; services not coordinated, lack of communication between different professional figures Expectations: more communication, coordination between all people involved | Relationship with professionals or services |
Metzger et al. 2013 [54] | Hospital | Cardiologist,palliative physician | Experience: no awareness of PC; no aggressive measures for symptoms; hospice seen as death imminent; resistant to PC for those who didn't know; for other, PC is welcomed Expectations: true understanding of PC and hospice | Role of PC |
Alonso et al. 2017 [45] | Hospital and hospice | Cardiologist, palliative physician | Experience: not all perceive disease severity; significant relationship between perceiving illness severity and PC service utilization Expectations: more understanding of disease severity | Impact of patients’ condition on FCGs |
Small et al. 2009 [66] | Hospital, home care, nursing home | Cardiologist, nurse | Experience: lack of communication with professionals; no discussion on the place of death and how to die; difficulty to discuss; importance of faith and religion. Perception of death in home, sudden or in nursing home as a "good death" generally seen peaceful; complaints on hospital care, too many unnecessary interventions, unsympathetic staff; wish for "making comfortable" approach for patients; lack of bereavement support | Psychological issues; Relationship with professionals or services |
Chester et al. 2021 [67] | Hospital, Hospice, Home care | Cardiologist, nurse | Experience: awareness of diagnosis, variable understanding of disease severity; feer associated with palliative care; no understanding of transfer to hospice; positive experience of shared decision-making process between patient, carer and healthcare professionals; pivotal role of advanced nurse practitioner—perceived as a broker in a complex health and social care system | Relationship with professionals or services; Worries and plans for the future; Role of PC |
Alvariza et al. 2017 [71] | LTC facilities | Cardiologist, nurse | Experience: happiness, trust in healthcare professional care; did not need support for themselves, feelings of relief from sharing responsibility with providers; feeling of isolation, the main focus was on patients; lack of communication with providers | Psychological issues; Impact of patients’ condition on FCGs Relationship with professionals or services |
Kaasalainen et al. 2013 [68] | LTC facilities | Cardiologist, nurse, social worker, pharmacist | Experience: difficulties in understanding HF related problems and those related to other diseases; unpredictable and sudden HF exacerbations; lack of communication between patients, CG and providers. Nurses were the key figures to coordinate with; social workers seen as helpful (sometimes they lack relevant knowledge) Expectations: need more info about HF and strategies of care; need for individualized care; need for family support; need to have specialist consultation outside LTC | Relationship with professionals or services; Worries and plans for the future; Impact of patients’ condition on FCGs |