Dataset Information

Resilience in family caregivers of patients diagnosed with advanced cancer - unravelling the process of bouncing back from difficult experiences, a hermeneutic review.

ABSTRACT:

Background

Despite the risk for developing mental disorders, most of advanced cancer patients' family caregivers undergo a resilient process throughout the caregiving period. Research on resilience in caregivers of advanced cancer patients is scarce and further hindered by the lack of a univocal definition and a theoretical framework.

Objectives

To provide clarity on the concept of resilience by proposing an integrative view that can support health care professionals and researchers in conducting and interpreting research on resilience.

Methods

The review process was inspired by the hermeneutic methodology: a cyclic review process, consisting of repeated searching and analysing until data saturation is reached and focussed on achieving a deeper understanding of ill-defined concepts. The definitions from eighteen reviews on resilience and the theoretical frameworks from eight concept analyses were analysed. The composing elements of resilience were listed and compared.

Results

The American Psychological Association's definition of resilience and Bonanno's theoretical framework are suggested to guide further research on resilience. Moreover, four knowledge gaps were uncovered: (1) How do resilience resources interact? (2) What are the key predictors for a resilient trajectory? (3) How do the resilient trajectories evolve across the caregiving period? And (4) how does the patient's nearing death influence the caregiver's resilience?

Conclusion

To address flaws in conceptualisation and the resulting gaps in knowledge, we suggest a definition and a theoretical framework that are suited to allow heterogeneity in the field, but enables the development of sound interventions, as well as facilitate the interpretation of intervention effectiveness.

SUBMITTER: Opsomer S

PROVIDER: S-EPMC7470057 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:Background and objectivesResearch into people with dementia's experiences of the Covid-19 pandemic has tended to focus on vulnerabilities and negative outcomes, with the risk of reproducing a discourse in which people with dementia are positioned as passive. Informed by concepts positioning people with dementia as 'active social agents', we aimed to identify the pandemic-related challenges faced by people recently diagnosed with dementia and examine the ways in which they actively coped with, and adapted to, these challenges.Research design and methodsIn-depth interviews with 21 people recently diagnosed with dementia, recruited through an existing national cohort. Data was analysed thematically using Framework.FindingsKey challenges included reduced social contact, loneliness and loss of social routines; difficulties accessing and trusting health services; dementia-unfriendly practices; and disparate experiences of being able to 'get out' into the physical neighbourhood. People with dementia responded to challenges by maintaining and extending their social networks and making the most of 'nodding acquaintances'; learning new skills, for communication and hobbies; supporting others, engaging in reciprocal exchange and valuing connection with peers; seeking help and advocacy and challenging and resisting dementia-unfriendly practices; maintaining and adapting habitual spatial practices and being determined to 'get out'; and employing similar emotional coping strategies for the pandemic and dementia.ConclusionsSupport for people with dementia, especially during public health crises when carers and services are under pressure, should involve utilising existing capacities, appropriately supporting the acquisition of new knowledge and skills, 'safety-netting' through the availability of a named professional, advocacy and support and use of 'check-in calls' and creating supportive social and environmental circumstances for people with dementia to sustain their own well-being.

Project description:Human Immunodeficiency Virus (HIV) continues to take a heavy toll on the lives of many people, with the worst impact on health and wellbeing for the affected individuals in fragile states. The HIV situation in Somalia is not clearly known and experiences of the people living with HIV in this war-torn region are often unexpressed. This pilot qualitative study sought to explore the experiences of people diagnosed with HIV living in Mogadishu, and their resilience in access to care and social support.Participants were recruited through drug dispensers at the HIV clinic in Banadir Hospital. Face-to-face in-depth interviews were conducted in Somali in May 2013 among patients who were receiving antiretroviral therapy (ART) from the HIV clinic in Mogadishu. These were tape-recorded, transcribed, and translated for content analysis.Three women and four men who were living with HIV shared the following narratives. Their perception was that they had either got HIV from their spouses or through health care contamination. They were very knowledgeable about the realities of HIV, how the medication works, nutritional requirements, and drug adherence. They were always willing to go an extra mile to secure a good life for themselves. However, the external HIV stigma impacted their access to care. They faced challenges in their homes and at work which compelled them to seek support from non-governmental organizations (NGOs) or close family members. This stigma often affected their disclosure to the wider community due to the uncertainty of the repercussions, leading to a life of extreme loneliness and financial difficulties. The participants' coping mechanisms included living together and starting their own NGO for support with very strong optimism about their prognosis.The people diagnosed with HIV living in Mogadishu are highly knowledgeable about HIV transmission, the realities of living with a diagnosed HIV infection, and the efficacy of HIV treatment. Our small sample suggests adequate access to ART through NGOs. However, widespread HIV stigma limits HIV status disclosure to families and communities, which creates a risk of self-isolation and ill health. Still, affected individuals have developed resilient mechanisms for managing the risks. They strive to remain employed for economic security, adhere to HIV treatment, engage in support groups, and maintain the utmost optimism about their prognosis.

Project description:BackgroundThe number of people living with chronic conditions is increasing worldwide, and with that, the need for multiple long-term complex care across care settings. Undergoing transitions across healthcare settings is both challenging and perilous for patients. Nevertheless, knowledge of what facilitates quality during transitions in healthcare settings from the lifeworld perspective of patients is still lacking. Therefore, we aimed to explore the lived experience in healthcare quality for Danish adult patients during healthcare pathways including transitions across settings.MethodsWithin a hermeneutic-phenomenological approach, interviews were conducted with three women and five men with various diagnoses and care paths between 30 and 75 years of age. Data underwent a three phased thematic analysis leading to three themes.ResultsPatients with various illnesses' experiences of quality of care is described in the themes being powerless in the face of illness; burdensome access and navigation; and being in need of mercy and striving for kindness. This highlights that patients' experiences of quality in healthcare pathways across settings interweaves with an overall understanding of being powerless at the initial encounter. Access and navigation are burdensome, and system inflexibility adds to the burden and enhances powerlessness. However, caring care provided through the kindness of healthcare professionals supports patients in regaining control of their condition.ConclusionsThis hermeneutical-phenomenological study sheds light on the lived experiences of people who are at various stages in their care paths with transitions across healthcare settings. Although our findings are based on the lived experiences of 8 people in a Danish context, in light of the discussion with nursing theory and other research, the results can be reflected in two main aspects: I) kind and merciful professional relationships and II) system flexibility including access and navigation, were essential for their experiences of care quality during healthcare transitions. This is important knowledge when striving to provide patients with a clear voice regarding quality in care pathways stretching across settings.