Risky business: Lived experience mental health practice,nurses as potential allies

Mental health policy includes a clear expectation that consumers will participate in all aspects of the design and delivery of mental health services. This edict has led to employment roles for people with lived experience of significant mental health challenges and service use. Despite the proliferation of these roles, research into factors impacting their success or otherwise is limited. This paper presents findings from a grounded theory study investigating the experiences of Lived Experience Practitioners in the context of their employment. In‐depth interviews were conducted with 13 Lived Experience Practitioners. Risk was identified as a core category, and included sub‐categories: vulnerability, ‘out and proud’, fear to disclose, and self‐care. Essentially participants described the unique vulnerabilities of their mental health challenges being known, and while there were many positives about disclosing there was also apprehension about personal information being so publically known. Self‐care techniques were important mediators against these identified risks. The success of lived experience roles requires support and nurses can play an important role, given the size of the nursing workforce in mental health, the close relationships nurses enjoy with consumers and the contribution they have made to the development of lived experience roles within academia.     

The lived experience of the diabetes nurse specialist regular check-ups, as narrated by patients with type 2 diabetes

Aim. The aim was to elucidate the lived experience of regular diabetes nurse specialist check‐ups among patients with type 2 diabetes. Background. Diabetes care with diabetes nurse‐led clinics in primary care has been established in Sweden since the 1980s. Information about patients’ lived experience of these regular check‐ups is important in the further development of diabetes nursing in primary care. Methods. Narrative interviews were conducted with 10 women and 10 men with type 2 diabetes regarding their lived experience in everyday life and the regular check‐ups by the diabetes nurse specialist. A phenomenological‐hermeneutic method inspired by Ricoeur was used in the analysis. Results. Patients’– with type 2 diabetes – lived experience of regular check‐ups showed an overall positive influence on the patients’ way of living with the disease by underpinning and developing their understanding and management of daily life. This influence was interpreted as an interlinked chain comprising the following elements; being confirmed, being guided within the disease process, becoming confident and independent and being relieved. Every link contained a positive influence from being dependent‐independent, autonomous and a feeling of freedom in patients striving for an everyday life with a disease under control. Relevance to clinical practice. The development of diabetes‐nurse‐led clinics from the perspective of the patient must consider the patient's individual need for support and continuity with the diabetes nurse specialist. Consultations with collaborative partnership and specific expertise that is easy to access implied autonomous disease self‐management in terms of patients’ own control of the disease over time. In view of the increasing number of patients with diabetes, this could positively impact the availability of diabetes nursing care.     

Women's stories of their experiences as overweight patients

Title. Women’s stories of their experiences as overweight patients. Aim. This paper is a report of a study to illuminate the meaning of women’s experiences as overweight patients in their encounters with healthcare services and healthcare providers. Background. Overweight and obesity are increasingly important issues for women’s health internationally. Overweight or obese women may delay or avoid health care if care providers have previously reacted negatively to them based on weight. However, studies focusing on the meaning of women’s experiences as overweight patients and as recipients of healthcare services are lacking. Method. A hermeneutic phenomenological approach was used. Face‐to‐face interviews were conducted in the United States of America in 2007 with eight women volunteers who self‐identified as being overweight patients. The framework of van Manen’s lifeworld existentials of lived space, lived body, lived time and lived relation‐guided reflection for data analysis. Findings. The essence of women’s experiences was a battle to fit into the world of healthcare services. Four major themes were identified. ‘ Struggling to fit in ’ consisted of trying to fit into limited physical space (examination rooms, equipment), limited time, and limited satisfaction and support in relationships with healthcare providers. ‘ Being dismissed ’ consisted of demeaning and embarrassing interactions with providers. ‘ Feeling not quite human ’ involved the stigma of being different because of body size. ‘ Refusing to give up ’ consisted of persistence in seeking support and advice from professionals despite negative past experiences. Conclusion. Awareness of these findings could reform understanding of women’s experiences as overweight patients and raise the consciousness of nurses worldwide to develop sensitive communication strategies and healthcare environments that support holistic care.     

Working experiences of Iranian retired nurses: A content analysis study

Understanding the experiences of retired nurses can be useful in increasing self‐confidence, motivation to work and work enthusiasm among nurses. The purpose of this study was to explore the work experiences of Iranian retired nurses. A qualitative design was conducted using a content analysis approach. Purposive sampling was used to choose the study participants. Semi‐structured interviews were held to collect the perspectives of 20 retired nurses (10 female and 10 male). Two main themes emerged in the data analysis: ‘work problems and unpleasant experiences in a sense’ with subthemes ‘exhausting work’, ‘insufficient salary’, ‘inappropriate relation’ and ‘unsuitable social position’; and ‘job satisfaction and pleasant experiences in a sense’ with subthemes ‘divine satisfaction and religious belief’, ‘satisfaction of patients and their companions’ and ‘love of nursing profession and relaxation experience’. The findings indicate the challenges that nurses face after retirement. These experiences will help nurse managers to adopt appropriate measures to support nurses after retirement.     

Being an outpatient with rheumatoid arthritis--a focus group study on patients' self-efficacy and experiences from participation in a short course and one of three different outpatient settings

Scand J Caring Sci; 2011; 25; 394–403
Being an outpatient with rheumatoid arthritis – a focus group study on patients’ self‐efficacy and experiences from participation in a short course and one of three different outpatient settings Background: A Danish study compared three different outpatient settings for persons with rheumatoid arthritis (RA). All participants completed a short course before random allocation to one of three groups. A third of the patients continued with planned medical consultations. A third was allocated to a shared care setting with no planned consultations. The final third was allocated for planned nursing consultations every 3 months. Little knowledge exists of patients’ experiences at different outpatient settings. Aims: (1) To explore the patients’ experiences of participation in the course and one of the three different outpatient settings and (2) to explore whether some of these experiences can explain possible changes in self‐efficacy beliefs. Method: In total six focus group interviews were carried out with 33 participants from the three settings. The interviews and the analysis were inspired by phenomenological philosophy. Results: On the short course the participants felt understood, gained new insights and some changed behaviours after attendance. Important themes in experiences from the three outpatient settings were: (1) continuity and relationships with health professionals, (2) a need for others to take control, and (3) contact with health professionals. Specific findings: The nursing consultations were experienced as less factual and less authoritarian than the medical consultations. The participants in the shared care setting had a lack of confidence in the GP’s competence to manage their RA. However, they felt responsible for taking action in case of a flare up. The study provided opportunities to enhance the participants’ self‐efficacy beliefs. Conclusion: When planning follow‐up care, the focus needs to be on continuity, the interpersonal relationship and easy access to health professionals with thorough knowledge of RA. A short course and consultations with nurses and hospital doctors can enhance patients’ self‐efficacy and thereby strengthen their confidence to assess and manage their own disease.     

The experience of being an 'extracorporeal membrane oxygenation' relative within the CESAR trial

Aims and objectives: This article reports a study exploring experiences of the relatives of adult patients receiving extracorporeal membrane oxygenation (ECMO) within the CESAR trial. Background: Relatives of ECMO patients have undergone unique experiences which have not previously been addressed in the literature and thus may have different needs which may not be met by present practice. Design and methods: A grounded theory approach was adopted. In‐depth unstructured interviews were conducted with family members of 10 surviving adult patients who had been randomized and received ECMO within the CESAR trial. Results: Relatives have a range of needs specific to the ECMO experience, these include the depth and positivity of information. Particular areas for support were concerning a perceived self‐inflicted nature of illness, personal guilt, distance from home, receiving ‘the call’, weaning from sedation and transfer/discharge from the ECMO unit. Conclusions: Relatives would benefit from the opportunity to talk about their ‘ECMO experiences' following the patient's recovery to enable them and their families to ‘move on’. Relevance to clinical practice: Interventions need to be in place to follow‐up relatives and patients to provide ongoing support to the family unit.     

Drinking resumption: problematic alcohol use relapse after rehabilitation. A phenomenological hermeneutical perspective

The majority of patients being treated for alcohol abuse disorders experience one or more relapses after treatment. The fact that people use this inebriant in a way leading to so much harm and suffering might seem a conundrum. Therapists, family and others might find the person's relapse to be dramatic and upsetting, and one might question whether the person has the sufficient will or motivation to change. However, few previous studies have explored relapse from the patient's perspective. The aim of this study was to illuminate the patient's lived experience of relapse and to develop a deeper understanding of this phenomenon. The study consisted of qualitative interviews using a phenomenological hermeneutical approach. Three main themes emerged from the analyses: ‘craving’, ‘self‐image’ and ‘time’. The findings were discussed in the context of phenomenological literature. Cravings could occur unpredictably; nevertheless, craving was a common experience for the patients and signified a risk of relapse. Bodily experiences of craving were frequently mentioned, and alcohol addiction could be understood as to be a disease or a learned habit. Self‐image was, at times, adversely affected by relapse episodes. Therefore, feelings of shame, self‐respect and recognition were significant concepts. This study found that the perception of time as past, present and future greatly influenced the participants' experiences of relapse and rehabilitation. Thus, relapse was an upsetting and dramatic experience that could cause great discomfort and sometimes life‐threatening situations. However, relapse could also be viewed as a planned event. This study highlights important truth and reality about alcoholism and relapse grounded in people's lived experience.     

Need of support in people with chronic obstructive pulmonary disease

Aim and objective

The aim of this study was to describe peoples’ experiences and expectations of support when living with chronic obstructive pulmonary disease.

Method

We conducted and analysed face‐to‐face or telephone interviews with 17 individuals (aged 44–77 years) diagnosed with chronic obstructive pulmonary disease. The interviewer asked open‐ended questions aimed at encouraging further narration, and we analysed the participants’ narratives using a phenomenological hermeneutical approach. This report adheres to the COREQ guidelines.

Results

The overall theme suggests that people with chronic obstructive pulmonary disease describe support as shared knowledge and experiences, based on the following subthemes; similar experiences, the need of genuine professional knowledge, self‐reliance versus self‐blame, and the Internet – feeling safe but uncertain.

Conclusions

People with chronic obstructive pulmonary disease find their strength through shared knowledge and dialogical support with others who have similar experiences and with professionals. A person‐centred eHealth approach may be suitable for this group as it offers both collaboration and support.

Relevance to clinical practice

There is a demand for access to genuine professional knowledge as additional support to patients’ own capabilities and needs. Patient associations were assessed as reliable sources of information and to some extent also support, but the importance of access to professional sources was also stressed.     

Qualitative analysis of patients’ intensive care experience during mechanical ventilation

Aim. To understand patients’ intensive care experience while receiving mechanical ventilation in intensive care units. Background. The mechanically ventilated patient’s experience in the intensive care unit is unique. Notably lacking are international studies on patients’ experience, particularly those living in Asia. A better understanding of patients’ experience is needed for nurses to develop approaches to take care of these patients. Design. A phenomenological approach formed by the ideas of Heidegger was used. Methods. Eleven participants surviving from mechanical ventilation were interviewed in‐depth. Patients were asked to describe their experience by responding to the question ‘what is it like to experience mechanical ventilation treatment at an ICU?’. Giorgi’s phenomenological analysis procedure was used to analyse the data. Results. Five mutually exclusive themes emerged, which were: ‘being in an unconventional environment’, ‘physical suffering’, ‘psychological suffering’, ‘self‐encouragement’ and ‘self‐reflection’. ‘Self‐encouragement’ and ‘self‐reflection’ enhanced patients’ self‐confidence, which was beneficial to recovering. Conclusion. Patient’s experiences while receiving mechanical ventilation in the intensive unit were poignant and frightening. Relevance to clinical practice. Critical care nurses should place the highest priority on recognising and meeting the needs of ventilated patients in intensive care units. An intensive care unit should be a place for the patient to live as a human being; not just a place to survive.     

Perceptions of effective self-care support for children and young people with long-term conditions

Aims and objectives. To: (1) Examine children’s/young people’s, parents’ and professionals’/workers’ perceptions of the effectiveness of different models of self‐care support, (2) identify factors that support and inhibit self‐care and (3) explore how different models integrate with self‐care support provided by other organisations. Background. Childhood long‐term illness has been largely overlooked in government policy and self‐care support under‐researched when compared with adults. There is a lack of evidence on which are the most appropriate models and methods to engage young people and their parents in self‐care. Design. Case study. Methods. Case studies of six different models of self‐care support were conducted using multiple methods of data collection in 2009. Semi‐structured interviews were conducted with 26 young people, 31 parents and 36 self‐care support providers. A sample of self‐care support activities was observed and relevant documents reviewed. Data were analysed using the Framework approach. Results. The effectiveness of self‐care support projects was defined in relation to four dimensions – providing a sense of community, promoting independence and confidence, developing knowledge and skills and engaging children/young people. Self‐care support provided by schools appeared to be variable with some participants experiencing barriers to self‐management and inclusion. Participants self‐referred themselves to self‐care support projects, and there was a lack of integration between some projects and other forms self‐care support. Conclusion. This study adds to knowledge by identifying four dimensions that are perceived to be central to effective self‐care support and the contextual factors that appear to influence access and experiences of self‐care support. Relevance to clinical practice. Study findings can inform the development of self‐care support programmes to meet the needs of individuals, families and communities. In addition, the findings suggest that healthcare professionals need to support schools if young people with long‐term conditions are to have the same educational and social opportunities as their peers.     

Chronic illness self-management: taking action to create order

Background. This paper presents research that was framed by our early understandings about the ways that people incorporate the consequences of illness into their lives. The word ‘transition’ has been used to describe this process. We believed self‐management to be central to the transition process but this assertion required further research, hence this paper. Aim. The research aimed at understanding the way in which people who lived with chronic illness constructed the notion of self‐management. While the participants of this study were living with arthritis, the focus was on understanding the meaning of self‐management rather than the experience of living with the symptoms of arthritis. Approach. Data were generated when nine people living with arthritis were invited to write an autobiography about their life and experiences of living with illness. Two telephone interviews were recorded with each participant and then the research group (researchers and participants) convened for a discussion meeting. Findings. In contrast to health professionals who identify self‐management as structured education, participants identified self‐management as a process initiated to bring about order in their lives. Creating a sense of order, or self‐management, had four key themes (i) Recognizing and monitoring the boundaries, (ii) Mobilizing the resources, (iii) Managing the shift in self‐identity, (iv) Balancing, pacing, planning and prioritizing Conclusions. People learned about their responses to illness through daily life experiences and as a result of trial and error. They reconfigured their daily lives and reconstructed their self‐identity by exploring their personal limitations or boundaries. Self‐management of chronic illness has been considered as both structure and process, however it is the process of self‐management that we contend is central to the experience of transition. Relevance to clinical practice. Clinical nursing intervention for people with a long term illness may be enhanced when self‐management is approached from a broad, contextual perspective and self‐management processes are integrated into clinical practice. The challenge is for nurses to embrace processes in nursing practice that will facilitate interactions with clients without obstructing the diversity of perspectives, create an environment conducive to learning and engage individuals in identifying self‐management strategies that have meaning in their lives.     

The experiences of patients in using sensory rooms in psychiatric inpatient care

The use of sensory rooms and similar sensory approaches in psychiatric inpatient settings is becoming increasingly common. In sensory rooms, patients can choose different sensory stimulating items that may help regulate distress and enhance well‐being. Outcomes are often measured as effects on patients’ self‐rated distress and rates of seclusion and restraint. The subjective experiences of patients using sensory rooms have been less explored. This paper presents a qualitative study of the experiences of 28 patients who chose to use sensory rooms on seven different types of psychiatric inpatient wards. Data were collected by individual patient interviews and by texts written by patients. A qualitative content analysis resulted in four categories: emotional calm, bodily calm, empowerment, and unexpected effects. A majority of the participants described several positive experiences, such as enhanced well‐being, reduced anxiety, increased self‐management, and enhanced self‐esteem. Our findings align with previous research that has shown similar positive patient experiences, and support the use of sensory rooms as part of person‐centred care.     

Effect of peer support on health outcomes in patients with cardiac pacemaker implantation: A randomized,controlled trial

The aim of this study was to examine the effect of a nurse‐led telephone‐based peer support program on health outcomes in patients after cardiac pacemaker implantation. Seventy six patients who received cardiac pacemaker implantation were recruited as participants and randomly assigned to either the peer support group or the usual care group. The usual care group received routine care and health education measures provided by nurses; the peer support group received telephone‐based peer support. Health‐related quality of life, self‐care knowledge–attitudes–practice, postoperative anxiety and depression, compliance with attending scheduled follow‐up visits, and the incidence of postoperative complications were evaluated at baseline and 6 months’ postintervention for the two groups. The result showed that the interventions had a better effect on self‐care knowledge–attitudes–practice, postoperative anxiety and depression, and compliance with attending scheduled follow‐up visits in the peer support group than in the usual care group. This study confirms that telephone‐based peer support improves self‐care ability, compliance with attending scheduled follow‐up visits, and reduces postoperative anxiety and depression more effectively than conventional nurse care among patients with cardiac pacemaker implantation.     

Mental health nurses' perspectives of people who self‐harm

Self‐harm is a significant health issue, a leading cause of serious injury and is an indicator of psychological distress. Nurses play an important role in providing therapeutic care to people who self‐harm. The aim of this study was to explore mental health nurses’ (MHNs) experience of working with people who self‐harm. Data were collected using semi‐structured interviews and transcribed verbatim from 14 MHNs across Australia. Elo and Kyngäs’ inductive content analysis was used to extract meaning from the data which is reported in accordance with the consolidated criteria for qualitative research guidelines (COREQ). Two categories were identified which captured the MHNs’ experiences of working with people who self‐harm: (i) Nurses’ level of preparedness to work with people who self‐harm; and (ii) The healthcare system. Several sub‐categories were identified. Attitudes, knowledge, skills, and support from others influenced their experience of working with people who self‐harm. Clinical and life experience, undergraduate programme preparation and ongoing education all contributed towards developing therapeutic care with this group of patients. Nurses are vital in the care of people who self‐harm and an accurate understanding of the functions of self‐harm focuses therapeutic interactions to manage psychological distress and reduce further self‐harm and lessen the risk of suicide.