Exploring nursing presence as experienced by parents in pediatric oncology.

BACKGROUND: Nursing presence has been viewed as a valuable way to create therapeutic relationships and has been linked to better health outcomes for patients and families. However, whether nursing presence can be described and how parents in pediatric oncology experience this phenomenon remains unanswered. Therefore, the purpose of this study was to explore how parents of children with cancer describe and experience nursing presence. METHODS: This study used Giorgi's phenomenological approach to explore nursing presence as experienced by parents of children with cancer. Ten participants from a pediatric oncology clinic in Canada were interviewed. Giorgi's approach was used to analyze these data. FINDINGS: Based upon participants' descriptions, a structure of nursing presence emerged which included six constituent features: An attitude of presence, a source of encouragement, clinical experience and expertise, therapeutic communication, family involvement, and a sense of home away from home. Most notably, nursing presence as experienced by parents was characterized by the 'being' and 'doing' of presence which were equally important. CONCLUSION: The experiences described by parents provided rich and nuanced insights into what it meant to experience nursing presence in a pediatric oncology setting. This study provides a structure for this meaning making and expounds on its constituent features, describing what nursing presence resembles when experienced by parents of children with cancer. PRACTICE IMPLICATIONS: This study informs nursing practice, policy, and education in ways that are likely to enhance care and the subsequent well-being of pediatric oncology patients and families.

Managing the unmanageable through interdependence in adolescents living with type 1 diabetes and their parents: A constructivist grounded theory.

BACKGROUND: Management of T1D is complex and requires continuous care and monitoring that place many demands on adolescents with T1D and their parents. The purpose of this study was to explore the nature of interdependence with T1D management with adolescents and their parents. METHODS: Using a constructivist grounded theory methodology, 32 open-ended interviews were conducted, transcribed, and analyzed from 11 adolescents aged 10-18 years with T1D and eight parents. FINDINGS: The data were coded using three coding phases: initial, focused, and theroetical and this process continued until theroetical saturation was reached. The substantive theory that emerged from the data describing parents' and adolescents' main concern of Maintaining Optimal Glycemic Control was Managing the Unmanageable through Interdependence. Four related subprocesses were found: Completing T1D Tasks, Attaining Support, Balancing Independence, and Reconciling Reality. These subprocesses occurred within the context of the ever-changing, Nature of the Illness. DISCUSSION: There is a dynamic relationship associated with interdependence between adolescents with T1D and their parents that varied situationally and by age. Participants also indicated interdependence occurs or they would like it to occur, with others beyond themselves and the health-care team to others willing to be involved. APPLICATION TO PRACTICE: Interdependence is a dynamic process and requires ongoing evaluation by health-care professionals of its function in the daily management of T1D by parents and adolescents. Additional research into of the roles of health professionals and others in promoting interdependence is needed.

Mental Health and Addiction Related Emergency Department Visits: A Systematic Review of Qualitative Studies.

Mental health and addiction (MHA) related Emergency Department (ED) visits have increased significantly in recent years. Studies identified that a small subgroup of patients constitutes a disproportionally large number of visits. However, there is limited qualitative research exploring the phenomenon from the perspectives of patients who visited ED frequently for MHA reasons, and healthcare providers who provide care to the patients since the overwhelming majority of studies were quantitative based on clinical records. Without input from patients and healthcare providers, policymakers have inadequate information for designing and implementing programs. The purpose of this study was to systematically review the literature of qualitative research on frequent MHA related ED visits. The findings of the review revealed that a lack of community resources and existing community resources not meeting the needs of patients were critical contributing factors for frequent MHA related ED visits.

Influences of the culture of science on nursing knowledge development: Using conceptual frameworks as nursing philosophy in critical care nursing.

Nursing knowledge development and application are influenced by numerous factors within the context of science and practice. The prevailing culture of science along with an evolving context of increasingly technological environments and rationalization within health care impacts both the generation of nursing knowledge and the practice of nursing. The effects of the culture of science and the context of nursing practice may negatively impact the structure and application of nursing knowledge, how nurses practice, and how nurses understand the patients and families for whom they care. Specifically, the nature of critical care and its highly technical environment make critical care nursing especially vulnerable to these potentially negative influences. The influences of the culture of science and the increasingly technical practice context may result in an overreliance on the natural sciences to guide critical care nursing actions and an associated marginalization of the caring relationship in critical care nursing practice. Within this environment, nursing philosophy may not be foundational to nursing actions; rather, the dominant culture of science and the rationalization of health care may be informing nursing practice. As such, the ideology and goals of nursing may not be central to the practice of critical care nursing. The purpose of this paper is to explore the influence of the culture of science on the development of nursing knowledge and theory. Further, we aim to describe the value of using conceptual frameworks, such as Roy's Adaptation Model, as a nursing philosophy to influence the development of person-centred nursing knowledge and theory to inform critical care nursing practice as it related to the care of patients and families. In doing so, nursing philosophy is situated as foundational for nursing actions.

Perspectives of healthcare professionals on patient Internet use during the cancer experience.

In this study, we document cancer healthcare professionals' views of patients' use of cancer-related Internet information (CRII) and their views on how it informs the ways patients interact with healthcare professionals and services from the point of view of health professionals. We used an interpretive descriptive approach, conducting interviews and focus groups with oncology healthcare professionals (n = 21) at a University-affiliated western Canadian cancer treatment centre. Data were analysed using thematic analysis. We present an initial understanding of how CRII alters, informs and modulates patients' cancer experience and relates to their interactions with healthcare professionals and services. Findings were synthesised into two thematic categories: pragmatic concerns and priorities; and processes and practices. Healthcare professionals were supportive of patients' needs for more information, particularly at key points in the cancer trajectory when information may be lacking. Participants concurred that CRII could positively benefit patients and, if shared with their healthcare professional, could benefit the patient-healthcare professional relationship. Oncology healthcare professionals provide pivotal information to patients; thus, they are well situated to engage patients in discussions about CRII and incorporate this into patient encounters. These actions may open new lines of communication with patients, strengthen the patient-professional relationship and empower patients to be engaged in their own care.

Family caregiving for persons with advanced heart failure: An integrative review.

OBJECTIVE: The unique needs of caregivers of those with advanced heart failure (HF) are not effectively being met, and reports of physical and mental health challenges are common. The objective is to identify the current state of the literature related to family caregivers of persons with advanced HF, ascertain gaps that require further exploration, and provide preliminary practice recommendations based on the results. METHOD: Systematic review of quantitative and qualitative literature. A search of CINAHL, Medline, EMBASE, and PubMed identified 24 articles that met inclusion criteria. Data were analyzed using the constant comparison method and coded. Thematic analysis was used to develop themes. RESULT: Sixteen qualitative and seven quantitative studies met inclusion criteria. Analysis of these studies identified six key areas: (1) undertaking a journey in a state of flux, (2) gaining strength, (3) forgetting oneself along the way, (4) seeking out sources of support, (5) preparing for end of life, and (6) finding closure. SIGNIFICANCE OF RESULTS: The healthcare system currently struggles to meet the care demands of patients with chronic conditions such as advanced HF; as such, informal caregivers are undertaking key roles in the management of symptoms and promotion of the health of those with advanced HF. When caregivers are not adequately prepared for their role, both patient and caregiver well-being is compromised; therefore, a deeper understanding of the caregiving experience could assist in identifying the cause of caregiver anxiety and result in the development of strategies to minimize its effects. Overall, this review will also contribute to improving the current practice when working with caregivers of persons with advanced HF and serve as a basis for development of evidence informed interventions in the future.

A Metasynthesis: Uncovering What Is Known About the Experiences of Families With Children Who Have Life-limiting and Life-threatening Illnesses.

PURPOSE: To conduct a metasynthesis of qualitative research exploring parents' psychosocial experiences during complex and traumatic life transitions related to caring for a child with a life-limiting (LLI) or life-threatening illness (LTI). BACKGROUND: Parents' experiences of caring for a child impacted by an LLI or LTI are not clearly understood, and holistic, comprehensive pediatric nursing care for parents who have children with LLI and LTIs continues to be developed as treatment improves and survival is extended. REVIEW METHODS: Predetermined inclusion and exclusion criteria were used to review qualitative studies. Those included were appraised, classified, and synthesized using systematic procedures guided by Sandelowski and Barroso (2006). DATA SOURCES: A systematic search of qualitative research was conducted by an experienced librarian to identify and retrieve studies from 10 databases. RESULTS: Of the 3515 studies screened, 23 were included. A synthesis of the findings demonstrated that parents experience profound and pervasive uncertainty, leading to their own illness experience being described as a dual reality in which fighting for survival and recognizing the threat of their child's death were daily challenges. Three key processes emerged: the devastation of living with uncertainty, the emergence of hope, and moving forward. CONCLUSION: The integration of findings adds to the current body of knowledge by highlighting the very complex experiences that parents undergo. These findings can support a more comprehensive pediatric nursing plan of care that accounts for the intricacies of the parental experience and the importance of hope.

Ways of knowing on the Internet: A qualitative review of cancer websites from a critical nursing perspective.

People diagnosed with cancer typically want information from their doctor or nurse. However, many individuals now turn to the Internet to tackle unmet information needs and to complement healthcare professional information. The purpose of this study was to qualitatively explore the content of commonly searched cancer websites from a critical nursing perspective, as this information is accessible, and allows patients to address their information needs in ways that healthcare professionals cannot. This qualitative examination of websites is informed by Carper's fundamental patterns of knowing and complemented with the critical view to technology espoused by the philosophy of technology. We conducted a review of 20 websites using a two-step interpretive descriptive approach and thematic analysis. We identified the dominant discourse to be focused on empirical information on treatment, prognosis, and cure, and a paucity of sociopolitical, ethical, personal, and esthetic information. In place of holistic, nuanced, and accurate knowledge nurses may provide, patients find predominantly empirical and biomedical information online. Discussion explores and critiques online cancer content, gaps in information, and the importance of information diversity. Implications focus on needed discourse around pervasive technologies and the nursing role in assessing and directing patients to holistic information.

A metasynthesis study of family caregivers' transition experiences caring for community-dwelling persons with advanced cancer at the end of life.

BACKGROUND: Family caregivers (broadly defined as family and friends) experience multiple concurrent transitions when caring for a person with advanced cancer. AIMS: To (a) explore the transition experience of family caregivers caring for persons with advanced cancer living in the community, (b) describe potential triggers for transitions, (c) identify what influences this experience, and (d) develop a conceptual framework of their transition experience. DESIGN: Sandelowski and Barroso's methodology for synthesizing qualitative research included (a) a comprehensive search of empirical literature, (b) quality appraisal of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. DATA SOURCES: Literature was sourced from six electronic data bases. Inclusion criteria were as follows: (a) published qualitative studies (and mixed-method designs) of the caregiving experience of family caregivers of community-living persons with advanced cancer at the end of life, (b) participants (caregivers and care recipients) of 18 years of age and above, (c) studies published in English in any country, and (d) studies published between 2004 and 2014. RESULTS: A total of 72 studies were included in the metasynthesis. Family caregivers experience a "life transition" whereby their lives are permanently altered. The participants described the process of redefining normal which consisted of coming to terms with their situation and connecting with others. Outcomes of these processes were as follows: (a) maintaining a sense of personhood, (b) reframing hope, (c) maintaining self-efficacy, (d) finding meaning, and (e) preparing for the death of their care recipient. CONCLUSION: The findings provide a framework to guide the development of supportive programs and future research.

Honoring the voices of bereaved caregivers: a Metasummary of qualitative research.

BACKGROUND: Family caregiving in the context of advanced disease in particular, can be physically and emotionally taxing. Caregivers can subsequently face bereavement exhausted with few supports, limited resources and a significant proportion will develop negative psychological and social outcomes. Although some research has attended to the bereavement experiences of family caregivers who had cared for a person requiring palliative care, a comprehensive qualitative understanding of the impact of caregiving on bereavement has not been articulated. The purpose of this study was to conduct a qualitative metasummary to explore the experiences of bereaved family caregivers of people who received palliative care services, regardless of their underlying disease. METHODS: Sandelowski and Barroso's qualitative metasummary method was utilized: 1287 articles were identified through extensive database searches (i.e. - MEDLINE, PsychINFO, and CINAHL) and reviewed to determine if they fit the criteria. Those included in the review were assessed for study quality. Findings from each study were then thematically coded and a frequency of themes was calculated. RESULTS: The sample consisted of 47 qualitative studies. A total of 15 themes emerged. In descending order of frequency, the 15 themes were: the individual emotions of serenity, sadness, guilt, uncertainty, trauma, escape, and anger; post-loss experiences that helped the caregiver in bereavement; post-loss experiences that hindered; practical life changes; caregiver role identity; pre-loss experiences that helped; pre-loss experiences that hindered; caregiver context; and a need for different kinds of supports. Three key findings emerged from the themes: (1) many different aspects of the caregiving experience impact the bereavement experience, (2) every bereavement experience is unique, and (3) a variety of supports must be developed and made available to caregivers to meet these unique needs. CONCLUSIONS: Based on the metasummary findings, changes are needed in practice and policy to ensure the health and well-being of the family caregiver is maintained by offering support both during caregiving and bereavement.

Promoting Early Detection of Breast Cancer and Care Strategies for Nigeria.

Breast cancer is the most common cancer in women particularly in developing countries like Nigeria, with high mortality, and economic costs. Worldwide, it is predicted that more than one million women are diagnosed with breast cancer, and more than 400,000 will die from the disease every year. A comparative integrative review of the literature from Nigeria and Canada showed that in Canada, there is positive association between wide spread education, early detection, the disease stage at diagnosis, and survival rates. In Nigeria, presentation with the advanced stage of the disease makes survival very low. The primary factors responsible for the late presentations are lack of awareness, misconceptions about breast cancer causes, and treatment outcomes. It is recommended that guidelines and policies about breast cancer early detection, care strategies, and ongoing management pathways be produced, disseminated, and adopted. The guidelines will assist practitioners and patients in making informed decisions and choices about the most appropriate health care for their specific clinical situations. The implementation of evidence-based guidelines will most likely help to improve care processes, the quality of clinical decisions and patient treatment outcome.

Creating a Social Media Assessment Tool for Family Nursing.

The use of social media (SM) is contributing to an unprecedented state of global connectivity and occupying an increasingly prominent position in the lives of individuals and families. The more integrated these media become into society the more likely they are to play a role in overall health and family functioning, be it positively or negatively. Family systems theory provides an ideal lens through which to examine the effects of SM in today's family life. This article introduces a new SM assessment tool aligned with the principles of this foundational theory. Family nurses can use the proposed Social Media Assessment Package (SMAP) to gain an initial picture of usage patterns within a family as well as identify and support positive future SM choices. Practitioners may also use the SMAP in a personal evaluation of their practice as a means to maximize SM use in ongoing professional development.

Yoga as palliation in women with advanced cancer: a pilot study.

OBJECTIVE: The purpose of this pilot study was to investigate the palliative potential of home-based yoga sessions provided to women with advanced cancer. METHOD: Personalised 45-minute yoga sessions were offered to three women with advanced cancer by an experienced yoga teacher. Each woman took part in a one-to-one interview after the completion of the yoga programme and was asked to describe her experiences of the programme's impact. RESULTS: The personalised nature of the yoga sessions resulted in similar positive physical and psychosocial effects comparable to those demonstrated in other studies with cancer patients. Participants described physical, mental, and emotional benefits as well as the alleviation of illness impacts. The enhancement of mind-body and body-spirit connections were also noted. CONCLUSION: Personalised home-based yoga programmes for people with advanced cancer may produce similar benefits, including palliation, as those institutionally-based programmes for people with non-advanced cancer.

Indigenous people's experiences at the end of life.

OBJECTIVE: The primary purpose of this metasynthesis study was to explore the end-of-life experiences of Indigenous peoples by synthesizing the findings of qualitative research. METHOD: Sandelowski and Barroso's methodology for synthesizing qualitative research was used and included (a) a comprehensive search, (b) appraising reports of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. Research team members guided this process. This team was multidisciplinary and included Indigenous and non-Indigenous researchers from Canada, Australia, New Zealand, and the United States. Following a comprehensive search, 2255 studies were reviewed and assessed against five inclusion criteria: (a) studies on the experiences of Indigenous populations (all genders, 18 + years of age) at the end of life, (b) studies published in English from any country, (c) studies using qualitative and mixed-methods designs, and (d) studies published between 1993 and 2013. RESULTS: Some 18 studies met the inclusion criteria, and their findings were synthesized. "Preparing the spirit" for transition to the next life was the overarching theme. "Preparing the spirit" occurred within the context of "where we come from." Processes involved in "preparing the spirit" were healing, connecting, and protecting; through these processes, "what I want at the end of life" was realized. Although not the focus of the metasynthesis, a significant finding was that the studies reviewed identified very clear barriers within healthcare systems and current healthcare provider practices to "preparing the spirit." SIGNIFICANCE OF RESULTS: The findings provide a beginning understanding of the end-of-life experiences of Indigenous peoples and a foundation for future research. More interpretive qualitative research is critical if palliative care services, the healthcare system, and healthcare providers are to reduce current barriers to "preparing the spirit" for the journey at the end of life.

Understanding Parental Experiences Through Their Narratives of Restitution, Chaos, and Quest: Improving Care for Families Experiencing Childhood Cancer.

The purpose of this secondary analysis was to develop an enhanced understanding of the experiences of parents who have children in treatment for cancer. Data collected from 16 parents (12 mothers and 4 fathers) were analyzed using Frank's dialogical narrative analysis. Findings demonstrated that parents' experiences were represented in chaos, restitution, and quest narratives. Each of these narratives was only one instance of a very complex and changing parental experience that cannot be understood in isolation from the others. The holistic understanding provided by these findings contributes to a more comprehensive understanding of parental experiences of their child's illness and highlights the need for health professionals to invite conversations about parents' illness experience and attend to the specific narrative type parents are presenting to support them adequately. Additional research is required to develop supportive approaches for each narrative which takes into account the complexities of parents' experiences.

Mapping the Caregiver Experience in a Canadian Province: Research Methodology for the Saskatchewan Caregiver Experience Study.

BACKGROUND: Policies and services for older adults are increasingly focused on living in the community, rather than relying on institutions. A total of 70-80% of community care for older adults is provided by family and friend caregivers. With Canada's aging population, the number of caregivers to older adults is growing. PURPOSE: The purpose of this paper is to describe the research methodology that was employed in the Saskatchewan Caregiver Experience Study. The methodology was used to map the experiences and gather perspectives of caregivers in Saskatchewan and to identify their priority support needs. METHODS: Qualitative description was the approach in this study. An online qualitative survey was administered via SurveyMonkey and distributed via Facebook and community newsletters. The survey collected caregiver demographics and asked three open-ended questions regarding: (1) the challenges that caregivers experience; (2) the positive aspects of caregiving; and (3) the support needs and priorities of Saskatchewan caregivers. A fourth question where caregivers could freely express any other experiences or perspectives was included. Content analysis was the method used for data analysis. RESULTS: 355 individuals met the inclusion criteria for this study. Participants were evenly distributed amongst urban-large, urban-small/medium, and rural settings in Saskatchewan. The average age of caregivers and care recipients were 61 and 83 respectively. CONCLUSION: This study has implications for research, practice, and policy. By gathering the full spectrum of the caregiver experience in Saskatchewan, this study can help to inform how communities, governments, and our healthcare system can best support caregivers in their role.

Hope against hope: exploring the hopes and challenges of rural female caregivers of persons with advanced cancer.

BACKGROUND: This paper focuses on the qualitative component of a study evaluating a hope intervention, entitled Living with Hope Program (LWHP), designed to foster hope in female caregivers of family members living with advanced cancer. The purpose of this research is to share, in the form of a story, the experiences of rural female caregivers caring for family members with advanced cancer, focusing on what fosters their hope. Hope is a psychosocial and spiritual resource that has been found to help family caregivers live through difficult transitions and challenges. METHODS: Twenty-three participants from rural Western Canada completed daily journal entries documenting their hopes and challenges. Cortazzi's (2001) method of narrative analysis was used to analyze the data, which was then transcribed into a narrative entitled 'hope against hope.' RESULTS: The journal entries highlighted: the caregivers' hopes and what fostered their hope; the various challenges of caregiving; self-care strategies, and; their emotional journey. Hope was integrated throughout their entire experience, and 'hope against hope' describes how hope persists even when there is no hope for a cure. CONCLUSIONS: This research contributes to the assessment of caregiver interventions that impact hope and quality of life, while illustrating the value of a narrative approach to both research and practice. Journaling may be particularly valuable for rural caregivers who are isolated, and may lack direct professional and peer support. There is an opportunity for health professionals and other providers to foster a relationship of trust with family caregivers, in which their story can be told openly and where practitioners pay closer attention to the psychosocial needs of caregivers.

The 15-Minute Family Interview as a learning strategy for senior undergraduate nursing students.

Nursing care of families continues to be a challenge within complex and demanding health-care systems. Educational strategies to bridge the theory-practice gap, connecting classroom learning with clinical experiences in undergraduate nursing education, enable students to develop the skills required to form meaningful partnerships with families. This article describes how undergraduate nursing students complete a 15-Minute Family Interview in a clinical practice setting, and document the interview process in a reflective major paper. Students integrate research and theory and identify ways to improve the care of families in the clinical setting while building communication skills and confidence in interacting with families in everyday practice. The implementation of the assignment and the evaluation of the process, including quotes from 10 student papers and 2 clinical faculty members, are discussed. Implications for education and ongoing research are offered.

Application of nursing presence to family-centered care: Supporting nursing practice in pediatric oncology.

PURPOSE: In pediatric care settings, family-centered care (FCC) is an integral way to ensure family involvement in their child's care and has been known to improve health outcomes and families' psychosocial well-being. Similarly, nursing presence is deemed beneficial in the formation of authentic nurse-patient relationships and is known to facilitate healing and improve satisfaction for the patient and their family. The objective of this article is to explore how nursing presence supports FCC by closely examining the four concepts of FCC as described by Institute for Patient- and Family-Centered Care: dignity and respect, information sharing, participation, and collaboration. A case study is also presented to demonstrate how nursing presence can be applied in FCC, when caring for a pediatric oncology patient. CONCLUSION: Nursing presence is essential in FCC since it plays a key role in the formation of relationships, a fundamental element in the four concepts. Attributes of nursing presence can be interwoven in the FCC framework and have positive clinical, social, and emotional outcomes for the patient and family. Although literature has explored associations between FCC and nursing presence, there is need for more scientific research to justify this argument to support the improvement of quality of family nursing care and strengthen the FCC model. PRACTICE IMPLICATIONS: The four concepts of FCC lay a foundation for a model of care that can be enhanced by nursing presence, potentially providing a remedy for depersonalization of healthcare by improving nurse patient relationships in pediatric care settings. Nursing presence becomes less ambiguous when enacted in a FCC framework, revealing attributes that may be cultivated in family nursing to improve therapeutic relationships among nurses and family caregivers.

Championing Dementia Education: Adapting an Effective Scottish Dementia Education Program for Canadian Acute Health Care Providers.

With increasing numbers of persons living with dementia and their higher rates of hospitalizations, it is necessary to ensure they receive appropriate and effective acute care; yet, acute care environments are often harmful for persons with dementia. There is a lack of dementia education for acute health care providers in Canada. Scotland presently delivers a dementia education program for health care providers, known as the Scottish National Dementia Champions Programme. The objective of this Policy and Practice Note is to present the collaborative work of Scottish experts and Canadian stakeholders to adapt the Dementia Champions Programme for use in Canada. This work to date includes: (a) an environmental scan of Canadian dementia education for acute health care providers; (b) key informant interviews; and, (c) findings from a two-day planning meeting. The results of this collaborative work can and are being used to inform the next steps to develop and pilot a Canadian dementia education program.