‘I'm not an outsider, I'm his mother!’ A phenomenological enquiry into carer experiences of exclusion from acute psychiatric settings

Wilkinson, Claire; McAndrew, Sue

doi:10.1111/j.1447-0349.2008.00574.x

Cited by 86 publications

(124 citation statements)

References 33 publications

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“…Beneath the anger expressed towards services, participants may have felt powerless in caring for their loved ones (Wilkinson & McAndrew 2008). Additionally, there may be an implicit anger towards their loss of intimate relationship (Jones 2001, Wyatt et al 2015.…”

Section: Discussionmentioning

confidence: 99%

Men's experiences of having a partner who requires Mother and Baby Unit admission for first episode postpartum psychosis

Boddy

Gordon

MacCallum

et al. 2016

Journal of Advanced Nursing

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Aims The aim of this study was to explore the experiences of men during their partner's admission to a Mother and Baby Unit for first episode postpartum psychosis. Background Postpartum psychosis can be life‐changing for women, however little is known about the impact on their partners or their partners' needs. Design An Interpretative Phenomenological Analysis approach was used to analyse interview transcripts. Methods Semi‐structured interviews were conducted with seven participants. Interviews were conducted in 2014–2015. Findings Two main themes were identified: ‘What the f*** is going on?’ and ‘Time to figure out how your family works’. Partners experienced shock and confusion during postpartum psychosis onset. Most felt hospital admission was beneficial, although there were barriers to accessing help and involvement in their partner's care. A process of understanding changes to roles, relationships and family identity was described. Loss was a common experience, with a potentially lasting impact. Conclusions Men reported a range of challenging and positive experiences associated with their partner's postpartum psychosis. Improvements are needed in awareness of postpartum psychosis, access to appropriate services and support of partners.

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Section: Discussionmentioning

confidence: 99%

Men's experiences of having a partner who requires Mother and Baby Unit admission for first episode postpartum psychosis

Boddy

Gordon

MacCallum

et al. 2016

Journal of Advanced Nursing

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“…Many of these negative experiences seem avoidable. A change in attitude towards caregivers is needed in mental health care to value the caregivers’ role [1, 5, 7, 10, 15, 17]. If culture influences the help that the patient receives in a negative way, more active measures than guidelines need to be taken.…”

Section: Discussionmentioning

confidence: 99%

“…Better involvement of the patient’s family and network in the treatment may improve the patient’s and the relatives’ health, reduce sick leave rates, and reduce health care costs [4]. Over the last 25 years, several policy initiatives have been taken to increase the involvement of NOK of people with serious mental health problems [13–15]. However, various barriers exist which limit necessary involvement of NOK [7, 8, 16, 17].…”

Section: Introductionmentioning

confidence: 99%

Next of kin’s experiences of involvement during involuntary hospitalisation and coercion

et al. 2016

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BackgroundNorway has extensive and detailed legal requirements and guidelines concerning involvement of next of kin (NOK) during involuntary hospital treatment of seriously mentally ill patients. However, we have little knowledge about what happens in practice. This study explores NOK’s views and experiences of involvement during involuntary hospitalisation in Norway.MethodsWe performed qualitative interviews-focus groups and individual-with 36 adult NOK to adults and adolescents who had been involuntarily admitted once or several times. The semi-structured interview guide included questions on experiences with and views on involvement during serious mental illness and coercion.ResultsMost of the NOK were heavily involved in the patient’s life and illness. Their conceptions of involvement during mental illness and coercion, included many important aspects adding to the traditional focus on substitute decision-making. The overall impression was, with a few exceptions, that the NOK had experienced lack of involvement or had negative experiences as NOK in their encounters with the health services. Not being seen and acknowledged as important caregivers and co sufferers were experienced as offensive and could add to their feelings of guilt. Lack of involvement had as a consequence that vital patient information which the NOK possessed was not shared with the patient’s therapists.ConclusionsDespite public initiatives to improve the involvement of NOK, the NOK in our study felt neglected, unappreciated and dismissed. The paper discusses possible reasons for the gap between public policies and practice which deserve more attention: 1. A strong and not always correct focus on legal matters. 2. Little emphasis on the role of NOK in professional ethics. 3. The organisation of health services and resource constraints. 4. A conservative culture regarding the role of next of kin in mental health care. Acknowledging these reasons may be helpful to understand deficient involvement of the NOK in voluntary mental health services.Electronic supplementary materialThe online version of this article (doi:10.1186/s12910-016-0159-4) contains supplementary material, which is available to authorized users.

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“…The lack of appropriate information and involvement in clinical decisions makes it difficult for carers to resume their provision of support to the patient after discharge [20, 23–25]. …”

Section: Introductionmentioning

confidence: 99%

How to make carer involvement in mental health inpatient units happen: a focus group study with patients, carers and clinicians

et al. 2017

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BackgroundCarers are family members or friends who support people with a mental health problem without being paid. Carer involvement in mental health treatment has been consistently supported by research evidence and promoted by policies but its implementation rates are poor. Particularly when patients are treated in inpatient units, carers often report being left without information or being excluded from decisions about treatment. In this study we have explored, along with staff perspectives, views of patients and carers who had a recent experience of inpatient mental health care on how to improve the implementation of carer involvement in inpatient care.MethodsSixteen focus groups were held with carers, patients and clinicians in London, United Kingdom. We included staff working in inpatient units and patients and carers who had experience of inpatient care in the last five years. Data from focus groups were analysed using thematic analysis.ResultsEighty six participants in total (31 service users, 22 carers and 33 clinicians) attended the focus groups. Participants identified that generally, carer involvement should happen as soon as possible after admission, although this may be challenging in some cases. Carer involvement should include receiving information, participating in decisions about care and discharge and receiving emotional support by staff. When carers are involved, their personal knowledge of the patient’s condition should be utilised. Challenges to carer involvement may include problems with identifying carers during a mental health crisis, obtaining valid patient consent, sharing appropriate information, and contacting and engaging carers. Additionally, it was perceived that all the ward staff need to be actively engaged in order to make carer involvement happen and this cannot be left only to specifically trained clinicians.ConclusionsThese findings identify basic components that all family interventions in inpatient units should have. Further studies are needed to explore how and if purposively designed clinical interventions can improve carer involvement in inpatient treatment and, consequently, patient outcomes.

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‘I'm not an outsider, I'm his mother!’ A phenomenological enquiry into carer experiences of exclusion from acute psychiatric settings

Cited by 86 publications

References 33 publications

Men's experiences of having a partner who requires Mother and Baby Unit admission for first episode postpartum psychosis

Men's experiences of having a partner who requires Mother and Baby Unit admission for first episode postpartum psychosis

Next of kin’s experiences of involvement during involuntary hospitalisation and coercion

How to make carer involvement in mental health inpatient units happen: a focus group study with patients, carers and clinicians

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