Life‐sharing experiences of relatives of persons with severe mental illness – a phenomenographic study

Weimand, Bente; Hall‐Lord, Marie‐Louise; Sällström, Christina; Hedelin, Birgitta

doi:10.1111/j.1471-6712.2012.01007.x

Cited by 34 publications

(50 citation statements)

References 37 publications

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“…Weimand et al. reported that relatives of people with severe mental illness found themselves wiser and more generous towards people's differences because of the illness and that it felt meaningful to help the mentally ill next of kin and others. In this study, the relatives described that they felt gratitude to their next of kin, and it was a matter of course to help.…”

Section: Discussionmentioning

confidence: 99%

Relatives of patients with depression: experiences of everyday life

Skundberg-Kletthagen

Wangensteen

Hall‐Lord

et al. 2013

Scandinavian Caring Sciences

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The aim of this study was to describe experiences of everyday life as a relative of a person diagnosed with depression. A qualitative and descriptive design with a phenomenographic approach was chosen, and individual interviews with 24 relatives were carried out. Approval was given by the Regional Committee for Medical and Health Research Ethics, Norway (South East) ref 2010/126. The findings show the main category 'Living on the other person's terms', which may be expressed in terms of consideration for the next of kin, thus presenting a challenge and a need to be balanced against taking care of oneself. In addition, three descriptive categories emerged: 'Ambivalent relationship', 'Adjusting daily life' and 'Managing the situation'. In conclusion, the relatives of persons with depression may be in danger of developing their own health problems and in need for attention from health personnel.

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Section: Discussionmentioning

confidence: 99%

Relatives of patients with depression: experiences of everyday life

Skundberg-Kletthagen

Wangensteen

Hall‐Lord

et al. 2013

Scandinavian Caring Sciences

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“…Relatives of people with a mental illness are often oscillating between several emotions as they try to make meaning of their loved one's illness. According to Weimand, Hall‐Lord, Sällström, and Hedelin (), these emotions can develop across a spectrum of feelings that may strengthen or hinder relationships. Feelings of anger, disappointment, anxiety, and grief are not uncommon.…”

Section: Introductionmentioning

confidence: 99%

Not sick enough: Experiences of carers of people with mental illness negotiating care for their relatives with mental health services

Olasoji

Maude

McCauley

2017

Psychiatric Ment Health Nurs

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Aim The literature reporting experiences of relatives of people with mental illness regarding their interactions with mental health services identifies many commonalities. However, the actual experience of carers engaging the services and understanding healthcare systems remains a gap in the literature. The aim of this study was to explore the experiences of carers (of people with a severe mental illness) in a major area mental health service in Victoria Australia as they fulfil their caring role while negotiating support for their relative. A carer is defined as a family member or significant other who is the primary individual who provides informal care for a person with severe mental illness and may or may not be in receipt of income supplement for such a role. Specifically this study has a focus on the experience of the carer when negotiating care needs or admission with a mental health service. Method A qualitative descriptive approach was used with five focus groups as a means of data collection. Ethical approval for the study was obtained from both the hospital and universities ethics committees. Results Key themes identified using thematic analysis are presented in the words of the carers and include: "Juggling" between services; We became assertive and If only they would listen. Often carers were advocating for their relative and needing to negotiate between services (police and crisis assessment teams) to gain any form of assessment or intervention. Carers often spent a great deal of time on the phone to services only to be told that their relative was "not sick enough" to access care or that no response would occur without another service also being involved. Discussion Our research highlights the importance of working collaboratively with informal carers and acknowledging their valuable contribution to the care of their relatives with a severe mental illness. It is very important that adequate support is given to carers especially during the period when their relatives are experiencing a crisis. An understanding of their experiences ensures a more family focused approach towards care. The study findings should enable the healthcare team to focus attention on the issues which are most pertinent to carers. Nurses are advocates not only for the patient but also for their families. Relevance statement Carers supporting a person who experiences mental illness can often find themselves in difficult and emotionally challenging situations such as at times of crisis and admission to mental health services. The fourth and latest Australian National Mental Health Plan (2009-2014) acknowledged these concerns and highlighted the need to recognize the role of carers in promoting well-being and recovery of the relative with a mental illness. The plan acknowledges that families are often best placed to recognize signs of relapse in their family members with a mental illness and discharge planning should include the involvement of family members (Commonwealth of Australia, ). To achieve best care outcomes for consumer...

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“…They often play an important role as informal caregivers contributing to improvement of the patient’s health [1–5]. Furthermore, they are co-sufferers having been deeply involved in their family member’s suffering for years, and may themselves carry symptoms and ailments as a result of what they have been going through [6–8]. …”

Section: Introductionmentioning

confidence: 99%

“…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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Life‐sharing experiences of relatives of persons with severe mental illness – a phenomenographic study

Cited by 34 publications

References 37 publications

Relatives of patients with depression: experiences of everyday life

Relatives of patients with depression: experiences of everyday life

Not sick enough: Experiences of carers of people with mental illness negotiating care for their relatives with mental health services

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

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