Dataset Information

Narratives reflecting the lived experiences of people with brain disorders: common psychosocial difficulties and determinants.

ABSTRACT:

Background

People 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.

Objectives

To 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.

Methods

Seventy 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.

Results

First-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.

Conclusions

The 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.

SUBMITTER: Hartley S

PROVIDER: S-EPMC4013080 | biostudies-literature | 2014

REPOSITORIES: biostudies-literature

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Publications

Narratives reflecting the lived experiences of people with brain disorders: common psychosocial difficulties and determinants.

Hartley Sally S McArthur Maggie M Coenen Michaela M Cabello Maria M Covelli Venusia V Roszczynska-Michta Joanna J Pitkänen Tuuli T Bickenbach Jerome J Cieza Alarcos A

PloS one 20140507 5

<h4>Background</h4>People 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.<h4>Objectives</h4>To explore and gain deeper understanding of the experiences of people with seven brain disorders (alcohol dependency, depression, epilepsy, mu ...[more]

PMID: 24805128

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Project description:ObjectiveTo test the hypothesis of 'horizontal epidemiology', i.e. that psychosocial difficulties (PSDs), such as sleep disturbances, emotional instability and difficulties in personal interactions, and their environmental determinants are experienced in common across neurological and psychiatric disorders, together called brain disorders.Study designA multi-method study involving systematic literature reviews, content analysis of patient-reported outcomes and outcome instruments, clinical input and a qualitative study was carried out to generate a pool of PSD and environmental determinants relevant for nine different brain disorders, namely epilepsy, migraine, multiple sclerosis, Parkinson's disease, stroke, dementia, depression, schizophrenia and substance dependency. Information from these sources was harmonized and compiled, and after feedback from external experts, a data collection protocol including PSD and determinants common across these nine disorders was developed. This protocol was implemented as an interview in a cross-sectional study including a convenience sample of persons with one of the nine brain disorders. PSDs endorsed by at least 25% of patients with a brain disorder were considered associated with the disorder. PSD were considered common across disorders if associated to 5 out of the 9 brain disorders and if among the 5 both neurological and psychiatric conditions were represented.SettingThe data collection protocol with 64 PSDs and 20 determinants was used to collect data from a convenience sample of 722 persons in four specialized health care facilities in Europe.Results57 of the PSDs and 16 of the determinants included in the protocol were found to be experienced across brain disorders.ConclusionThis is the first evidence that supports the hypothesis of horizontal epidemiology in brain disorders. This result challenges the brain disorder-specific or vertical approach in which clinical and epidemiological research about psychosocial difficulties experienced in daily life is commonly carried in neurology and psychiatry and the way in which the corresponding health care delivery is practiced in many countries of the world.

Project description:Background Siblings of people with anorexia nervosa (AN) have been found to experience strong emotions, changing family roles and poorer wellbeing as a consequence of experiencing the effects of the illness on their sibling and family system. These factors, combined with genetic influences, may put siblings at an increased risk of developing eating disorder psychopathology in addition to other mental health issues. This research aims to explore the experiences of siblings of people with AN who have had eating difficulties themselves and investigate issues that may be important to the development and prevention of eating difficulties in this population. Methods This qualitative study used a reflexive thematic analysis approach. Ten adults who had witnessed a sibling with AN and experienced eating difficulties themselves participated in semi-structured interviews. Analysis Participants’ own eating difficulties were affected by the specific experience of witnessing a sibling with AN through mealtimes becoming emotionally charged, an increased focus on body size and diet, and comparisons with their sibling. Difficult experiences, such as marital discord amongst parents were common, as was a difficulty in managing emotions. The onset of AN within the family caused participants to take on caring responsibilities for their sibling and to hide their own difficulties for fear of adding additional burden to their parents. This reduced their perceived ability to access support and for some increased a desire to restrict as a coping mechanism for the stress they were experiencing. Systemic beliefs regarding the value of thinness were prevalent and influential. Protective factors, such as not wanting to become as unwell as a sibling with AN and an understanding of the negative consequences of AN, aided recovery. Conclusions Eating difficulties in siblings of people with AN may be influenced by competition for slimness, increased focus on diet and body size, and a need to manage difficult emotions. The disruption to social connections and a difficulty finding emotional support that may be experienced by people when a sibling develops AN may further influence susceptibility to eating difficulties. Further research is needed into the best ways to support siblings of people with AN. Supplementary Information The online version contains supplementary material available at 10.1186/s40337-022-00646-2. Plain English summary This research investigates the experiences of people who have had a sibling with anorexia and had some eating difficulties themselves. Participants described difficult emotions after their sibling developed anorexia and many took on responsibility for helping their sibling. This was a stressful experience which some people managed by restricting their own eating. There was an increased focus on food and body size in the home, and this could also influence participants’ diet. Getting help could be difficult as participants did not want to burden their family with their own difficulties. This research concludes that when treating people with anorexia, the impact on siblings should be considered, and support should be offered to siblings to help them to manage the difficulties that this illness presents. Supplementary Information The online version contains supplementary material available at 10.1186/s40337-022-00646-2.

Dataset Information

Narratives reflecting the lived experiences of people with brain disorders: common psychosocial difficulties and determinants.

Background

Objectives

Methods

Results

Conclusions

Publications

Narratives reflecting the lived experiences of people with brain disorders: common psychosocial difficulties and determinants.

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