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Table 1 Summary of articles included in the metasynthesis

From: The start of caring for an elderly dependent family member: a qualitative metasynthesis

Author (year), country Purposes Methods and sample Main Results
Houldin (2007) [30] Philadelphia (EEUU) To report on a descriptive study of patients newly diagnosed with advanced colorectal cancer. Semi-structured interviews to 14 carers and thematic content analysis. Findings revealed three domains: Experiencing total disruption of my life, Staying positive, and Attempting to keep family and children’s routines as normal as possible.
Paiva et al. (2012) [31] Río de Janeiro (Brasil) To discuss the relationship between the family and hospital discharge regarding manifestations, attitudes, feelings and practices. Semi-structured interviews to 9 carers and theory based on data approach. Findings reflected the categories: “Facing the unexpected,” “Recognizing the need for care after discharge” and “Realizing one’s importance in the recovery of the relative”.
Plank et al. (2012) [32] Verona (Italy) To explore and understand the experience of new informal carers in Italy during the transition from hospital to home. In-depth interviews and focus groups to 18 carers and a qualitative phenomenological approach. Family caregivers reflected their newly acquired role; the recipient’s condition; and the support they required. The core concept of ‘being responsible for everything’ seemed to be a recurring theme running through these three subject matters.
Grimmer et al. (2004) [36] Australia To describe the perceptions of people taking on a new or expanded caring role of an elderly patient recently hospitalised with a new or intensified health problem. Semi-structured interviews to 24 carers (method used not specified). The study highlighted carers’ perceptions of being unprepared for their new tasks, and their frustrations at the long-term and frequently significant changes to their lives brought about by assuming a caring role.
Teschendorf et al. (2007) [41] EEUU To describe informal cancer care provision from the perspective of the carer. Focus groups to 63 carers and content analysis. Providing supportive care introduced a balancing act in caregivers’ lives as they attempted to address complex and overlapping roles. They felt alone in their decisions, were under-prepared for tasks they assumed, and tried to shield the care recipient
Nahm et al. (2010) [37] Baltimore (EEUU) To explore informal carers’ experiences with providing care to older adults over the first 6-month trajectory of hip fracture recovery and their support needs. In-depth interviews to 10 carers and phenomenological approach. Management of hospital bills and transitions between care settings were especially burdensome. The caregiving situation was viewed as an opportunity to spend more time with their loved ones. Findings revealed unmet support needs expressed by caregivers of older adult hip fracture patients.
Smith et al. (2004) [35] Glasgow (Scotland) This paper reports on a study that aimed to describe the experience of caring for a stroke survivor at one year after stroke in Scotland. Semi-structured interviews to 90 carers and thematic data. Initially most carers found that they lacked the knowledge and skills to care for the stroke survivor at home and so they had to learn how to obtain the information and assistance required. Carers had to adapt to the changes that stroke effected in the stroke survivor and seek alternative ways of securing the resources they needed for managing their lives.
Pereira and Rebelo-Botelho (2011) [38] Portugal The purpose of this qualitative study was to understand the lived experience of individuals taking on the role of informal adult carers after an unexpected event involving a relative. Unstructured interviews to 14 carers and Van Manen’s approach. Four main themes were identified: losing control over time, feeling alone, failing expectations and taking over someone else’s life.
Greenwood et al. (2009) [40] London (England) To investigate the experiences of informal carers of stroke survivors over time. Audio-taped in-depth interviews to 31 carers (method used not specified). A central theme of uncertainty with a number of other interconnected themes were identified. Other themes including adopting routines and strategies, absolute and relative positives and questioning the future could be seen to both influence and be influenced by uncertainty.
Bakas et al. (2002) [39] Oklahoma (EEUU) To determinate the self-reported needs, concerns, strategies, and advice of stroke carers during the first 6 months after hospital discharge. Open questions by telephone to 14 carers (method used not specified). Findings revealed five major categories of caregivers needs and concerns: information, emotions and behaviours, physical care, instrumental care, and personal responses to caregiving.
Weng et al. (2011) [42] Taiwan (China) To explore the stress experienced by the primary family carer of the living-related liver transplantation patient during the postoperative stage. Face-to-face semi-structured interviews to 6 carers and thematic content analysis. Participant stress was caused by the gap between expectations and primary caregiving experiences. In particular, the five themes that were identified: unstable sentiment towards liver transplantation; entanglement of burden; non-synchronized family interaction; distance from the healthcare professional; and concern about the protector role function.
Silva-Smith (2007) [43] Colorado (EEUU) To describe the process associated with preparing for and beginning a new caring role following a family member’s stroke. Audio-taped interviews to 12 carers and grounded theory analysis. Restructuring life for caregiving was associated with five dimensions: daily life, managing multiple roles, relationship with the stroke survivor, future hopes and plans, and time for self.
Brereton and Nolan (2002) [45] Sheffield (England) To gain a better appreciation of the needs of new carers of stroke survivors and to consider how these needs change as their role develops. Interviews to 14 carers and grounded theory analysis. During the initial period carers engage in a number of different ‘seeking’ activities in order to try and ensure that they feel competent, confident and safe to provide care and that they understand the likely future demands they may face. Rather than being facilitated by staff, carers’ efforts often go unnoticed or are overlooked, resulting in carers feeling that they are ‘going it alone’.
Shyu (2000) [46] Taiwan (China) This study explored the needs of family carers during the transition from hospital to home. Face-to-face interviews to 16 carers and constant comparative analysis. Role tuning was the process used by caregivers and care receivers to achieve a harmonious pattern of caregiving and care receiving during the transition from hospital to home.
Shaw et al. (2013) [33] Sidney (Australia) To explore the experiences of family carers of people diagnosed with upper GI cancer after surgical intervention to (1) identify their unmet supportive care needs and (2) investigate how family carers perceive their role during this time. Semi-structured telephone interviews to 15 carers and constant comparative analysis. Family caregivers reported significant information and support needs, their distress was exacerbated by a lack of patient care knowledge. Access to support was limited by caregivers’ lack of understanding of the health system and they view their role as part of their family responsibility.
Rodrigues et al. (2013) [44] Sao Paulo (Brasil) To examine the transition of care in families caring for elderly persons who suffered the first episode of a cerebrovascular accident. Interviews to 10 carers and instrumental ethnographic approach. They describe the care process for the dependent elderly person, strategies for the care process and impact and acceptance of the limitations.
Abrahamson et al. (2017) [34] England To explore the experiences of individuals who have had a severe traumatic brain injury (TBI) and their carers in the first month post-discharge from in-patient rehabilitation into living in the community. Semi-structured interviews to 10 patients and nine carers, and thematic analysis. Many patients and carers felt unsupported in the inpatient phase, during transitions; they struggled to accept a new reality of changed abilities, loss of roles and loss of autonomy, and early experiences post-discharge exacerbated fears for the future.
Giosa et al. (2014) [47] Ontario (Canada) To explore informal family caregiver experiences in supporting care transitions between hospital and home for medically complex older adults. Semi-structured interviews to 12 caregivers and grounded theory analysis. They describe the theory “building capacity to care”, which involves assessing a caregiver’s unique family situation to tailor and provide relevant information, education, and training.
Moral-Fernández et al. (2018) [29] Jaén (Spain) To describe the initial process through which people who imminently become caregivers of a dependent elderly relative. In-depth interviews to 11 caregivers, and grounded theory analysis. An initial phase of changes, in which the caregiver assumes new activities; a second phase full of emotions, in which the needs and consequences emerge; and a third phase that emphasises acceptance as a coping strategy and uncertainty as an expectation of the future.