Narratives Reflecting the Lived Experiences of People with Brain Disorders: Common Psychosocial Difficulties and Determinants

Abstract

BackgroundPeople with brain disorders - defined as both, mental disorders and neurological disorders experience a wide range of psychosocial difficulties (PSDs) (e.g., concentrating, maintaining energy levels, and maintaining relationships). Research evidence is required to show that these PSDs are common across brain disorders.ObjectivesTo explore and gain deeper understanding of the experiences of people with seven brain disorders (alcohol dependency, depression, epilepsy, multiple sclerosis, Parkinson’s disease, schizophrenia, stroke). It examines the common PSDs and their influencing factors.MethodsSeventy seven qualitative studies identified in a systematic literature review and qualitative data derived from six focus groups are used to generate first-person narratives representing seven brain disorders. A theory-driven thematic analysis of these narratives identifies the PSDs and their influencing factors for comparison between the seven disorders.ResultsFirst-person narratives illustrate realities for people with brain disorders facilitating a deeper understanding of their every-day life experiences. Thematic analysis serves to highlight the commonalities, both of PSDs, such as loneliness, anger, uncertainty about the future and problems with work activities, and their determinants, such as work opportunities, trusting relationships and access to self-help groups.ConclusionsThe strength of the methodology and the narratives is that they provide the opportunity for the reader to empathise with people with brain disorders and facilitate deeper levels of understanding of the complexity of the relationship of PSDs, determinants and facilitators. The latter reflect positive aspects of the lives of people with brain disorders. The result that many PSDs and their influencing factors are common to people with different brain disorders opens up the door to the possibility of using cross-cutting interventions involving different sectors. This strengthens the message that ‘a great deal can be done’ to improve the lived experience of persons with brain disorders when medical interventions are exhausted.

Factors Predicting Response to the Recovery-Oriented Cognitive Behavioural Workshop for Persons Diagnosed with Schizophrenia

“…Environmental factors (e.g. frustrations with mental health services, stigmatising societal attitudes and personal factors) further impact the level of disability experienced (Hartley et al 2014). Therefore, there is a need to develop interventions that support the real-world functioning of persons diagnosed with schizophrenia (Nowak et al 2016).…”

“I’m still me – I’m still here!” Understanding the person’s sense of self in the provision of self-management support for people with progressive neurological long-term conditions

“…1,16,27 But few studies have drawn directly on the experience of living with different progressive neurological long-term conditions to inform the practice of self-management support. 15,28,29 In this respect, our paper makes a novel contribution to the evidence base. A second original aspect to our paper is that the sample represents a group of community rehabilitation service users, as opposed to a group of people with one particular health condition who may or may not have come in contact with these services, and therefore these data relate closely to actual service provision.…”

The Experience of Parkinson’s Disease: A Systematic Review and Meta-Ethnography

“…Scientific understanding around the physical symptoms of Parkinson's disease is now well established and research is needed to focus more on the impact of the disease and the major challenges faced by individuals who have the diagnosis [ 3 ]. As part of this, psychosocial difficulties can be extremely challenging for individuals with Parkinson's disease, for instance, restriction in participation of activities, reduced social contact, or the inability to retain a job [ 4 ]. Recently, research has been able to link psychological morbidity to the physical symptoms and experience of living with Parkinson's disease.…”

“…Importantly, it has been identified that activities of daily living are a significant predictor of health-related quality of life for individuals with Parkinson's disease [ 7 ]. Further, recent research has identified that the physical aspects of the disease (e.g., a reduction in the ability to perform activities) combined with other determinants (e.g., stress, anxiety, and communication difficulties) decrease an individual's social activities, increasing isolation and leading to depression [ 4 ].…”

“…However, their research did not consider a synthesis of experience; rather it provided a more descriptive account which lacked support from previous psychosocial theory/ies. A more recent study by Hartley et al [ 4 ] was able to identify some barriers and facilitators related to psychosocial difficulties based on the analysis of 11 qualitative articles. However, only one paragraph was devoted to the results identifying a very brief description of barriers and facilitators to mental well-being.…”