"Just pee in the diaper" - a constructivist grounded theory study of moral distress enabling neglect in nursing homes.

BACKGROUND: A growing body of evidence shows that many nursing home residents' basic care needs are neglected, and residents do not receive qualitatively good care. This neglect challenges nursing staff´s professional and personal ideals and standards for care and may contribute to moral distress. The aim of this study was to investigate how nursing staff manage being a part of a neglectful work culture, based on the research question: "How do nursing home staff manage their moral distress related to neglectful care practices?" METHODS: A qualitative design was chosen, guided by Charmaz´s constructivist grounded theory. The study was based on 10 individual interviews and five focus group discussions (30 participants in total) with nursing home staff working in 17 different nursing homes in Norway. RESULTS: Nursing staff strive to manage their moral distress related to neglectful care practices in different ways: by favouring efficiency and tolerating neglect they adapt to and accept these care practices. By disengaging emotionally and retreating physically from care they avoid confronting morally distressing situations. These approaches may temporarily mitigate the moral distress of nursing staff, whilst also creating a staff-centred and self-protecting work culture enabling neglect in nursing homes. CONCLUSIONS: Our findings represent a shift from a resident-centred to a staff-centred work culture, whereby the nursing staff use self-protecting strategies to make their workday manageable and liveable. This strongly indicates a compromise in the quality of care that enables the continuation of neglectful care practices in Norwegian nursing homes. Finding ways of breaking a downward spiralling quality of care are thus a major concern following our findings.

Making Neglect Invisible: A Qualitative Study among Nursing Home Staff in Norway.

BACKGROUND: Research shows that nursing home residents' basic care needs are often neglected, potentially resulting in incidents that threaten patients' safety and quality of care. Nursing staff are at the frontline for identifying such care practices but may also be at the root of the problem. The aim of this study was to generate new knowledge on reporting instances of neglect in nursing homes based on the research question "How is neglect reported and communicated by nursing home staff?" METHODS: A qualitative design guided by the principles of constructivist grounded theory was used. The study was based on five focus-group discussions (20 participants) and 10 individual interviews with nursing staff from 17 nursing homes in Norway. RESULTS: Neglect in nursing homes is sometimes invisible due to a combination of personal and organizational factors. Staff may minimize "missed care" and not consider it neglect, so it is not reported. In addition, they may be reluctant to acknowledge or reveal their own or colleagues' neglectful practices. CONCLUSION: Neglect of residents in nursing homes may continue to occur if nursing staff's reporting practices are making neglect invisible, thus proceeding to compromise a resident's safety and quality of care for the foreseeable future.

Legitimizing neglect - a qualitative study among nursing home staff in Norway.

INTRODUCTION: Residents in nursing homes do not always get qualitatively good nursing care, and research shows that residents' basic care needs are sometimes neglected. Neglect in nursing homes is a challenging and complex issue, yet a preventable one. Nursing home staff are at the frontline of detecting and preventing neglect but may also be the ones causing it. It is essential to understand why and how neglect happens in order to recognize, expose, and prevent its occurrence. Our aim was to generate new knowledge on the processes leading to and allowing neglect to continue in Norwegian nursing homes, by studying how nursing home staff perceive and reflect on when nursing home residents are neglected in their daily practice. METHODS: A qualitative exploratory design was used. The study was based on five focus group discussions (20 participants, total) and ten individual interviews with nursing home staff from 17 different nursing homes in Norway. The interviews were analysed according to Charmaz constructivist grounded theory. RESULTS: In order to make neglect an acceptable practice, nursing home staff apply different strategies. These strategies were identified as when the staff legitimize neglect by neglecting neglect, when the staff are not recognizing their own behaviour as neglectful, as expressed in their actions and language, and normalizing missed care when resources are lacking and nursing staff are rationing care. CONCLUSIONS: The gradual shift between judging actions as neglectful or not are made possible when nursing home staff legitimize neglect by not recognizing their practice as neglective, thus neglecting neglect or when they are normalizing missed care. Increased awareness and reflections on these processes may be a way of reducing the risk of and preventing neglect in nursing homes.

'I want to get back!' A qualitative study of long-term critically ill patients' inner strength and willpower: Back home after long-term intensive care.

AIMS AND OBJECTIVES: To provide insights into what promotes and challenges inner strength and willpower in formerly critically ill patients back home after a long-term ICU stay. BACKGROUND: Critically ill patients demand great resources during an ICU stay, some experience great challenges after discharge from hospital. Knowledge about how health professionals can promote former long-term critically ill patients' inner strength and willpower after discharge is essential, but still missing. DESIGN: A qualitative, hermeneutic-phenomenological approach using in-depth interviews with former long-term ICU patients. METHODS: Seventeen long-term ICU patients were interviewed 6-20 months after ICU discharge. The consolidated criteria for reporting qualitative research was used (COREQ,2007). RESULTS: Back home after hospital discharge, some former patients coped well while others suffered heavy burdens mentally and physically, along with economic problems. They handled their challenges differently: some found comfort and insight by reading their diary written by their ICU nurses, while several were struggling alone experiencing a lonesome silent suffering; these called for a follow-up support by the healthcare system. CONCLUSION: Long-term ICU patients' inner strength and willpower are vital salutogenic resources supporting the fight back to one's former independent life. However, physical, mental and economic challenges drain their inner strength to go on and succeed. Several long-term ICU patients need health-promoting follow-up support after hospital discharge. RELEVANCE TO CLINICAL PRACTICE: This study disclosed a lonely and silent suffering indicating a need for development of systematical health-promoting follow-up programmes including salutogenic components such as health-promoting conversations, diaries and web-based recovery programme along with a cell phone app.

A qualitative study of long-term ICU patients' inner strength and willpower: Family and health professionals as a health-promoting resource.

AIMS AND OBJECTIVES: To explore how the presence of family and health professionals influences long-term critically ill patients' inner strength and willpower as an incitement to keep fighting for recovery. BACKGROUND: This study reports long-term critically ill patients' experiences of family and health professionals as health-promoting resources in terms of significance for their inner strength and willpower. Earlier research on this topic is scarce. DESIGN: A qualitative, hermeneutic-phenomenological approach, within the context of Antonovsky's salutogenic theory. METHODS: Seventeen long-term critically ill patients were interviewed once, at 6-18 months after ICU discharge. The consolidated criteria for reporting qualitative research (COREQ) were used (Supplementary File 1). RESULTS: Four main themes identified how family and staff promoted and challenged the patient's inner strength and willpower: (a) the importance of family and friends; my family was surrounding me, (b) staff contributions, (c) challenges to inner strength and willpower in relation to family and (d) loneliness and indifferent care. CONCLUSION: This study brings new knowledge from the long-term critically ill patient's view about the impact of family, friends and nurses on the patient's inner strength and willpower. All impact is experienced positively and negatively. RELEVANCE TO CLINICAL PRACTICE: Knowledge from the long-term critically ill patient's view is vital in nurse-patient interactions to facilitate liberation of inner strength and willpower.

From breaking point to breakthrough during the ICU stay: A qualitative study of family members' experiences of long-term intensive care patients' pathways towards survival.

AIMS AND OBJECTIVES: To explore family members' experiences of long-term intensive care unit (ICU) patients' pathways towards survival and to highlight family members' efforts to promote the patient's health during the ICU stay. BACKGROUND: Although considerable research has been devoted to the substantial burden of long-term ICU patients, less attention has been paid to health-promoting factors that facilitate patients' health and survival during ICU stays. Support from family members can improve patient outcome. However, there is little knowledge of the specific contributions provided by family members. DESIGN: A hermeneutic phenomenological approach, within the context of Antonovsky's salutogenic theory and Merleau-Ponty's phenomenology of the body, involving the body as the fundament of experience and understanding. METHODS: In-depth qualitative interviews. Thirteen family members of long-term ICU patients were interviewed once, at six to 18 months after ICU discharge. The consolidated criteria for reporting qualitative research were used. RESULTS: Three themes were identified: (i) A body at a breaking point; (ii) family members' presence; and (iii) breaking through. In the perspective of the family members, their beloved ones were at a breaking point between life and death. The family's presence was significantly health promoting, demonstrating and communicating love and sensitivity. Moreover, family members' understanding of the patient's unique characteristics and personality was crucial to the patient's experience of being understood, recognised and acknowledged. Inner strength represented a life force capable of moving the patient from the breaking point towards a breakthrough towards life. Family members purposely used their knowledge about the patient to trigger, nurture and release the patient's inner strength. CONCLUSIONS: Family presence helps to trigger, arouse and release a patient's inner strength, representing important health-promoting factors facilitating patients' health and survival during an ICU stay. RELEVANCE TO CLINICAL PRACTICE: Insights into the unique and vital health-promoting influence of family participation indicate the responsibility of the ICU team to provide support for families.

Severe traumatic brain injury in Norway: impact of age on outcome.

OBJECTIVE: The aim of this study was to investigate the influence of age on mortality and 3-month outcome in a Norwegian cohort of patients with severe traumatic brain injury (TBI). METHODS: Norwegian residents ≥ 16 years of age who were admitted with a severe TBI to the country's 4 major trauma centres in 2009 and 2010 were included, as were adults (16- 64 years) and elderly patients (≥ 65 years). RESULTS: Half of the adult subjects and 84% of the elderly subjects were injured by falls. One-third of the adults and half of the elderly subjects were admitted to a local hospital before being transported to a regional trauma hospital. Subdural haematomas were more frequent in the elderly subjects. One-quarter of adults and two-thirds of the elderly subjects died within 3 months. At 3 months, 41% of the adult survivors were still in-patients, mainly in rehabilitation units (92%). Of the surviving elderly subjects, 14% were in-patients and none were in rehabilitation units. There was no difference in functional level for survivors at the 3-month follow-up. CONCLUSION: Old age is associated with fall-induced severe TBI and high mortality rates. Less intensive treatment strategies were applied to elderly patients in the present study despite high rates of haemorrhage. Few surviving elderly patients received rehabilitation at 3 months post-injury.