Seven Types of Uncertainty When Clinicians Care for Pediatric Patients With Advanced Cancer

ContextClinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative referral intervention for oncology teams we explored how uncertainty might influence palliative care referrals.ObjectivesTo describe distinct meanings of the term “uncertainty” that emerged during the qualitative evaluation of the development and implementation of an intervention to help oncologists overcome barriers to palliative care referrals.MethodsWe conducted a phenomenological qualitative analysis of “uncertainty” as experienced and described by interdisciplinary pediatric oncology team members in discussions, group activities and semistructured interviews regarding the introduction of palliative care.ResultsWe found that clinicians caring for patients with advanced cancer confront seven broad categories of uncertainty: prognostic, informational, individual, communication, relational, collegial, and inter-institutional. Each of these kinds of uncertainty can contribute to delays in referring patients to palliative care.ConclusionVarious types of uncertainty arise in the care of pediatric patients with advanced cancer. To manage these forms of uncertainty, providers need to develop strategies and techniques to handle professionally challenging situations, communicate bad news, manage difficult interactions with families and colleagues, and collaborate with other organizations.     

Complexity in caring for patients with advanced cancer

BACKGROUND: The gap between nursing research and practice is readily acknowledged in literature, with a variety of strategies suggested for reducing this gap. It is necessary not only to address problems of research implementation in practice, but also to find strategies that strengthen the influence of practitioners on research agendas through more collaborative relationships in order to have an impact on care of patients. A multi-centre research project was therefore initiated by two universities and three health care facilities, aiming to improve quality of care for patients with advanced cancer through a knowledge-exchange programme between nurse researchers, practitioners and students. AIM: The aim of this article is to explore how clinical staff reason about care provision for patients with advanced cancer, through analysis of 20 focus group discussions conducted with staff in three different health care facilities in two Swedish cities. An initial analysis based on grounded theory was complemented with consideration of the interactive process in the focus group discussions, and carried out by a team consisting of senior nurse researchers, clinical experts and nursing instructors. FINDINGS: The findings of the focus group discussions emphasize the complexity of caregiving for patients with advanced cancer. The tension between caregiving ideals and limits imposed by the realities of caregiving in today's health system were striking. Practitioners discussed the organization of care, different constellations of relationships between patients, family members and professionals, and theoretical and experiential knowledge as equally important aspects in dealing with all concrete situations in daily practice. The importance of reflective practice, use of self and ethical reasoning also permeated the focus group discussions. CONCLUSIONS: These findings highlight an integrated need both to influence organizational structures and working relationships, along with increasing knowledge, if sustainable change is to be effected.     

晚期肿瘤患者社区卫生服务需求的调查与分析

目的了解晚期肿瘤患者的社区卫生服务需求状况，为更好地开展社区姑息护理提供参考依据。方法采用问卷调查法，对上海市6个社区中的113名晚期肿瘤患者进行调查。结果晚期肿瘤患者对社区姑息护理需求量增加，社区成为肿瘤照护的重要场所。患者在社区中需求的涵盖面较广，且在不同情境下的主要需求有所不同，生理、心理、精神、社会、文化等方面均有所体现。结论应力求构建合理的由多学科专业人员所组成的姑息护理团队作为社区肿瘤照护的基本服务单元。     

The influence of an undergraduate problem/context based learning program on evolving professional nursing graduate practice

Graduates' perception of the value of their undergraduate program is a critical component of professional program evaluation and contributes a viewpoint rarely reported in the literature. It has been proposed that Problem Based Learning (PBL) enhances knowledge acquisition, clinical competency and professionalism as a consequence of students assuming the role of registered nurse as they work through real practice situations on a daily basis in the classroom. The purpose of this study was to determine how PBL graduates describe the contribution of the educational experience to their professional practice as nurses. Using focused ethnography, PBL graduates (N=45) participated in the study as individuals or through focus group discussions. Graduates described themselves as: self aware and self directed critical thinkers, patient advocates able to engage in evidence based holistic practice and interdisciplinary team members able to take on leadership roles and handle conflict.     

Complexity and contradiction: home care in a multicultural area

The aim of this study was to explore the meaning of experience for home-care nurses in a multicultural area of Sweden. Interviews and group discussions with a team of five home-care nurses were interpreted in accordance with a hermeneutical perspective. The meaning was expressed in connection with the complexities of place, and space for care. Contradictions developed from diversities of perspectives incorporated in this particular multicultural area. Nurses saw themselves as mediators and allowed complexity to be considered in order to manage care. They took on responsibility of creating a 'space of care', while the organizational structures of home care were perceived as something outside the care praxis. Making contradictions evident renders an intermediary caring strategy feasible.     

Developing a Healing Environment for Broken Souls of Patients With Life-Threatening Illnesses and Their Caregivers

What a privilege it is to be able to touch those sacred spaces in the soul of each person that we encounter everyday. Patients with life-threatening illnesses can struggle with physical, emotional, and existential and spiritual concerns and the suffering of caregivers. A key goal of our supportive and palliative care teams is to alleviate patient and caregiver suffering. When caring for patients with advanced and terminal illness, the spirituality of each member of the palliative care team becomes a single collective spirituality or soul with common goals, values, and belonging, with a main goal of providing the best care for patients and caregivers in the alleviation of suffering. Embracing the spiritual care into our daily practice is a common effort and a service provided by each member of the team. Our role as members of the collective soul is to preserve human dignity and raise up the broken souls of patients living with life-threatening illness by creating healing environments.     

Utilizing a collaborative learning activity to sensitize interprofessional students to palliative care scopes of practice with adolescent and young adults

Adolescent and young adults diagnosed with cancer represent a vulnerable population needing careful collaborative care from interprofessional teams. Healthcare providers must understand and appreciate the respective scopes of practice of palliative care team members to maximize the quality of care provided to these patients. A team of graduate students engaged in a collaborative learning activity to explore professional roles and responsibilities of palliative care team members when caring for adolescent and young adult oncology patients. Following a literature review and community expert interviews, students identified shared responsibilities of all team members and unique contributions of various professions. Engaging in this process highlighted and clarified the full scope of practice for each specialized team member. Educators should consider utilizing a similar collaborative learning activity to enhance students’ understanding of the roles and responsibilities of each member of the interprofessional healthcare team.     

More support,knowledge and awareness are needed to prepare emergency department nurses to approach potential intimate partner violence victims

Background

Intimate partner violence is a global health issue. In the emergency department, patients seek help for health problems that may be related to exposure to physical, psychological or sexual violence, or controlling behaviour from a current or former partner. Of the many victims that seek care in an emergency department, few are identified, especially among those whose chief complaint is not clearly related to recent physical abuse. Not having all the facts about a patient can jeopardise patient safety and delay treatment. The aim of this study was to describe experiences of caring for adults, subjected to intimate partner violence, from an emergency nurse perspective.

Methods

A qualitative semi-structured interview study of nine emergency care specialist nurses was conducted using content analysis.

Findings

Two categories emerged: ‘Subtle signs’ and ‘Not being enough’. The short encounters in emergency care do not allow for deep conversations. The informants highlighted the need for more knowledge about what and how to ask in that specific context. Some mentioned situations where the question had been avoided due to lack of time to handle the answer. The interviews revealed the importance of regular discussions to increase awareness of intimate partner violence and its prevalence among patients.

Conclusions

The organisation plays an important role in putting the question about intimate partner violence on the daily agenda and giving time to emergency nurses and other professions for training and reflection.     

Nurses’ attitudes towards perinatal bereavement care

Title. Nurses’ attitudes towards perinatal bereavement care. Aim. This paper is a report of a study conducted to explore the factors associated with nurses and midwives’ attitudes towards perinatal bereavement care. Background. Caring for and supporting parents whose infant has died is extremely demanding, difficult and stressful. In some situations nurses may experience personal failure, feel helpless, and need to distance themselves from bereaved parents because they feel unable to deal with the enormity of the parental feelings of loss. Method. A correlational questionnaire study using convenience sampling was carried out in Singapore in 2007 with 185 nurses/midwives in one obstetrics and gynaecology unit. Results. Regression models showed that nurses/midwives with religious beliefs and those with more positive attitudes to the importance of hospital policy and training for bereavement care were statistically significantly more likely to have a positive attitude towards perinatal bereavement care. Nurses emphasized their need for increased knowledge and training on how to cope with bereaved parents and requested greater support from team members and the hospital. Conclusion. Bereavement counselling education and preceptorship supervision are recommended to reduce this stressful experience, increase the confidence and expertise of novices, and lead to increased quality of care for bereaved parents.     

Violence in the care of adult persons with intellectual disabilities

Background. Violence, for example physical, psychological, financial and sexual abuse and neglect, exists and is an under‐reported problem in caring situations involving adult persons with intellectual disabilities and their caregivers, where both parties can be seen as victims and perpetrators. Aims and objectives. To investigate violent situations involving Swedish adult persons with intellectual disabilities and their caregivers in group‐dwellings. Design. A total population‐based survey. Methods. A questionnaire, including violence towards adults with intellectual disabilities and violence towards staff members during 1 year, was sent to all staff members (n = 164) from 17 care settings for adults with intellectual disabilities with a response rate of 74%. Results. Thirty‐five per cent of 122 respondents admitted they had been implicated in or witnessed a violent incident towards an adult person with intellectual disabilities and 14% of the staff members admitted they themselves had been the perpetrators. Sixty‐one per cent of the staff members described various situations when they were exposed to violence from an adult person with intellectual disabilities. Physical violence was most frequently reported. Most of the aggression occurred in helping situations when persons with intellectual disabilities did not co‐operate or when both actors reacted with violence. The violent situations led the staff members to feel powerless and inadequate. In order to cope they discussed with each other or with the manager. Conclusions. Violence seems to be accepted as a natural part of the daily care for adult persons with intellectual disabilities. Most of the violence is physical and psychological and occurs in close helping situations. Relevance to clinical practice. Supportive interventions, i.e. supervision for the staff members and training of communication skills individually or in group for the adults with intellectual disabilities.     

Nurses' experiences of abusive/non-abusive caring for demented patients in acute care settings

Nurses caring for patients with dementia in acute care settings often lack specialized education in geriatric nursing. The acute care settings do not have an environment made for dementia care. The staff often had a high workload, which makes the situation stressful and the nurses who take care of these patients might end up in difficult situations. The aim of this study was to describe nurses' experiences of difficulties related to caring for patients with dementia in acute care settings. Interviews were performed with 12 nurses. Qualitative thematic content analyses were carried out in several steps. The results show that the nurses experienced various difficulties in meeting patients with dementia in acute care settings. This gave rise to for example frustration. Most commonly reported was lack of time to treat these patients satisfactorily. The difficulties were mostly related to the often disorderly conduct of these patients, the ethical problems that appeared in the care of these patients, and the medical care organization. The problematic situations described sometimes led to abuse and neglect of these patients.     

The lived experience of closeness in partners of cancer patients in the home care setting

At present there are few data available on the experiences of closeness in partners of patients with advanced cancer. The aim of this study was to explore the lived experience of closeness in partners of patients with advanced cancer in palliative home care. Ten partners of patients admitted to a palliative, hospital-based home care unit participated in this study. Tape-recorded interviews were conducted and Giorgi's phenomenological analysis was used. Three themes emerged: dimensions of closeness, such as togetherness, sharing and daily concern; prerequisites for closeness; and obstacles that hindered closeness. In essence, closeness was described as a changing process that was expected to end. This study has revealed the importance of closeness in the partners of patients with advanced cancer. Experiencing closeness is of great importance when the disease is no longer curable and time is limited. Partners need professional help to facilitate this experience.     

Existential encounters: Nurses' descriptions of critical incidents in end-of-life cancer care

Nurses working with cancer patients in end of life care need to be prepared to encounter patients' psychosocial and spiritual distress.AimThe aim of this study was to describe nurses' experiences of existential situations when caring for patients severely affected by cancer.Methods and sampleNurses (registered and enrolled) from three urban in-patient hospices, an oncology clinic and a surgery clinic and a palliative homecare team were, prior to the start of a training program, invited to write down their experiences of a critical incident (CI), in which existential issues were featured.ResultsEighty-eight CIs were written by 83 nurses. The CIs were analyzed with qualitative content analysis. Two main themes were found: Encounters with existential pain experiences, which concerned facing death and facing losses; and Encountering experiences of hope, which concerned balancing honesty, and desire to live.ConclusionsThis study points out that health care professionals need to be aware of patients' feelings of abandonment in exposed situations such as patients' feelings of existential loneliness. That there are some patients that express a desire to die and this makes the nurses feel uncomfortable and difficult to confront these occurrences and its therefore important to listen to patients' stories, regardless of care organization, in order to gain access to patients' inner existential needs.     

Caring in residential aged‐care. Qualitative findings from an e‐cohort sub‐study

Aim. The aim of this e‐cohort sub‐study was to explore and describe nurses’ understandings of ‘caring’ in residential aged‐care. Background. The quality of the work environment is an important issue for recruitment, retention and workforce planning. Knowledge about the people in and the place that is the residential aged‐care facility may assist with the problems surrounding the recruitment and retention of nurses in the workforce. Design. Qualitative electronic cohort sub‐study. Methods. This paper presents the qualitative research findings from an electronic cohort sub‐study of 58 registered and enrolled nurses working in the residential aged‐care sector in 2007. Data were collected through an open ended question and a qualitative content analysis was used to generate the core categories. Results. The concept of caring was grounded in and constrained by, the everyday reality of the nurses in the study. Organisational imperatives for the completion of documentation necessary for accreditation and funding combined with under‐staffing restricted the time available for caring practices. Some nurses represented residential care faculties as devoid of care, others as a place where the resident was central to their work and care. The staff perceived of themselves as an ageing workforce in need of rejuvenation and resourcing. Conclusion. The concept of caring is manifest in nurses’ language as they describe their workplace, the residents, themselves and the structures that impact on what they do. Good caring manifests itself when the residents are central to the business of the aged care facility. However, nurses in this study describe a range of restrictive factors impeding caring practices and diminishing workforce morale and motivation to create environments that can truly be called a ‘home‐away‐from‐home’ and one that all people would find acceptable. Relevance to clinical practice. These findings have implications for aged‐care sector recruitment, retention and workforce planning within residential aged‐care facilities.     

The everlasting trial of strength and patience': transitions in home care nursing as narrated by patients and family members

The aim of this study was to describe and interpret patients' and their family members' lived experiences of caring at home. Twelve tape-recorded narratives, with seven patients and five family members, were interpreted in accordance with a phenomenological-hermeneutic method inspired by Ricoeur. The findings revealed life situations where natural caring was changed into patient-care-giver relations and the home became a public room. The patients had to deal with decreased abilities and the family members with adjusting to caring needs. The changes in the life situations were interpreted as long lasting and trying transitions. Implications for nursing and further research are proposed.     

Going on a journey: understanding palliative care nursing

AIM: To describe the qualitatively different ways a group of Australian nurses understood their experience of being a palliative care nurse. DESIGN: The research approach chosen was phenomenography. Fifteen nurses caring for people in a specialist palliative care unit in regional Australia were interviewed and transcribed interview data were analysed in order to identify understanding of experience. FINDINGS: The research identified and described five ways of understanding the experience of being a palliative care nurse: doing everything you can; developing closeness; working as a team; creating meaning about life; and maintaining myself. CONCLUSION: The group of palliative care nurses involved in this research understood their experience as journeying with their patients through the final phases of the person's life. The journey involved the patient, his/her family and members of the healthcare team. The journey was described further as a process of personal development which influenced how nurses construct meaning about life and maintain a sense of self. The experiences described reveal a great deal about palliative care nursing and provide useful knowledge and insights to assist practitioners, managers and educators.