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Experiences and needs of adult informal carers of adults at risk of suicide: A systematic review with mixed methods analysis

Abstract

Aim

To systematically review and synthesize primary research on experiences and needs of adult informal caregivers of adults at risk of suicide.

Design

Systematic review with a data-based convergent synthesis.

Data Sources

MEDLINE, PsychINFO and CINAHL were searched in April 2022 and February 2023. English language research focusing on experiences of adult carers of adults was included.

Methods

Articles were screened by title (n = 9077) and abstract (n = 132) with additional articles (n = 6) obtained via citation and hand searching. Thirty-one included studies were quality assessed using the Mixed Methods Appraisal Tool and study data were systematically extracted prior to thematic synthesis.

Results

Five interconnected themes resulted: transitions; living with fear and uncertainty; changing relationships; interface with healthcare professionals and services; what carers need and want. Caring impacts mental, physical and social wellbeing. Relationships are affected in ways which might not be evident when caring for a minor. Repeated suicidal behaviour is particularly challenging with ongoing hypervigilance contributing to burden, burnout and interpersonal strain. Poor carer support exacerbates negative effects; carers need to feel informed, educated, involved and holistically supported.

Conclusion

Timely support for carers is essential. Interventions should address emotional responses, relational changes and effective care recipient support. Longitudinal research is required to understand effects of ongoing caring where there are multiple suicide attempts.

Implications

Nurses can provide carers with early support and information and longer term psychosocial interventions. If carers are adequately equipped and supported patient safety and wellbeing will be improved.

Impact

Findings of this systematic review include relational changes due to carer hypervigilance reducing autonomy and living with the possibility of suicide. Clinician awareness of the potential for relational shifts will help them prepare and support carers.

Patient or Public Contribution

There was no patient or public contribution.

Grieving multiple losses: Experiences of intimacy and sexuality of people living with inflammatory bowel disease. A phenomenological study

Abstract

Aim

To explore patient experiences of intimacy and sexuality in those living with inflammatory bowel disease.

Design

An interpretative phenomenological study guided by van Manen's framework. Thematic analysis was conducted through interpretation and reflection on four existential domains: body, relationships, time and space.

Methods

Data were collected during 2019–2021 from 43 participants via face-to-face or telephone interviews, as well as anonymous collection of narratives submitted via Google Forms.

Results

Four themes were identified: Sexuality as lived incompleteness was the overarching theme representing the essence of the experiences of intimacy and sexuality. This theme covered the four main themes: Otherness of the body, Interrupted connectedness, Missing out on life fullness and Fragmented openness and each corresponded to an existential domain. Intimacy and sexuality are negatively affected by inflammatory bowel disease, with impact on quality of life. Patients experienced grieving multiple losses, from body image and control, to choice of partners and future opportunities. The four domains were difficult to separate and a close inter-relationship between each domain was acknowledged.

Conclusions

A model was developed to draw new theoretical insights to understanding the relationship between sexual well-being and psycho-emotional distress similar to grief.

Impact

First qualitative study to explore intimacy and sexuality experiences of those living with inflammatory bowel disease. Illness impact on sexuality has negative psycho-emotional implications as a result of losing the old self and capacity to have the desired relationships/sex life. A theoretical model was developed in an attempt to illustrate the close relationship of intimacy, sexuality and psycho-emotional well-being.

Patient or Public Contribution

Patients were involved in the study design.

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