The adolescent’s experience of cancer: An integrative literature review

AimThis integrative review appraises the literature that explores the experiences of the adolescent diagnosed with cancer.BackgroundThe cancer experience has an impact on the way the adolescent lives their life, their future hopes dreams and fears, their health and wellbeing. Healthcare professionals require an understanding of what the adolescent experiences after a diagnosis of cancer and during the treatment experience to be able to provide optimal age appropriate care.MethodsThe review was conducted following Whittemore and Knafl’s (2005) framework. A comprehensive search using the following four databases, CINAHL, MEDLINE, PyschINFO, Embase was undertaken for the period of 2005–2016. Google scholar, healthcare policies and guidelines reference lists were also searched. Screening and appraisal of 911 articles resulted in 22 articles being included in this review.FindingsThree themes were identified: ‘Losing what I know - this is what makes me different’, ‘Communication and information sharing - the need to know’, and ‘The importance of friends, peers and relationships’.ConclusionThis review reports that healthcare providers should be aware of the changing self-perceptions the adolescent experiences throughout the cancer journey. Accessing this information will enable healthcare providers to determine more appropriate care when these adolescents are feeling most vulnerable. The review identified there is limited information about the experience of the younger adolescent (11–15 years) with cancer. Future research may benefit from focusing on the stage of development of the adolescent with cancer.     

Welcoming expertise: Bereaved parents’ perceptions of the parent–healthcare provider relationship when a critically ill child is admitted to the paediatric intensive care unit

Background

Entering the paediatric intensive care unit with a critically ill child is a stressful experience for parents. In addition to fearing for their child’s well-being, parents must navigate both a challenging environment and numerous new relationships with healthcare staff. How parents form relationships with staff and how they perceive both their own and the healthcare providers’ roles in this early stage of their paediatric intensive care journey is currently unknown.

Ethics of care in technology-mediated healthcare practices: A scoping review

Background

Introducing new technologies into healthcare practices may challenge professionals' traditional care cultures. The aim of this review was to map how the ‘ethics of care’ theoretical framework informs empirical studies of technology-mediated healthcare.

Method

A scoping review was performed using eight electronic databases: CINAHL with full text, Academic Search Premier, MEDLINE, the Philosopher's Index, SocINDEX with Full Text, SCOPUS, APA PsycInfo and Web of Science. This was followed by citation tracking, and articles were assessed against the inclusion criteria.

Results

Of the 443 initial articles, 18 met the criteria and were included. We found that nine of the articles used the concept of ‘ethics of care’ (herein used interchangeably with the terms ‘feminist ethics’ or ‘relational ethics’) insubstantially. The remaining nine articles deployed care ethics (or its equivalent) substantially as an integrated theoretical framework and analytical tool. We found that several articles suggested an expansion of ethics of care to encompass technologies as part of contemporary care. Furthermore, ethics of care contributed to the empirical research by recognising both new relationships between patients and healthcare professionals as well as new ethical challenges.

Conclusion

Ethics of care is sparsely used as a theoretical framework in empirical studies of technology-mediated healthcare practices. The use of ethics of care in technology-mediated care brings new dilemmas, relational tensions and vulnerabilities to the foreground. For ethics of care to be used more explicit in empirical studies, it is important that it is recognised by research community as an adequate, universal ethical theory.     

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.     

Navigating the advanced cancer experience of underserved Latinas

Objective

Previous cancer research does not adequately inform us about the experiences of managing a more serious, life-threatening cancer condition, especially for underserved Latinas. This study was designed to explore the ways in which Latinas navigate through and deal with advanced cancers.

Methods

A purposive sample of 24 underserved Latina women was selected from a randomized controlled trial. Data were analyzed using a phenomenological approach to explore navigation of the advanced cancer experience.

Results

This study outlines a conceptual framework which denotes the interconnectedness of multiple factors that influence the cancer experience for Latina women. Experiences with advanced cancer were embedded within a social, cultural, and systemic framework described as 1) intrapersonal experiences; 2) interpersonal experiences; 3) provider interactions; and 4) medical system factors.

Conclusions

This study indicates that underserved Latinas face complex circumstances that interfere with the diagnosis and treatment of cancer. However, women expressed positive attitudes and held beliefs about survival which helped them through their experience with cancer. The implication of these findings is that Latinas have protective attitudes and beliefs that help them to overcome “tragic” circumstances. Providers need to become aware of the complexity of these issues in order to achieve competent, effective, and efficient practice in medical settings with Latinas.     

Personalized pain assessment: What does ‘acceptable pain’ mean to you?

Background

What ‘acceptable pain’ means may be different for everyone and dependent on the moment and the context. In this text, we explore the concepts of pain acceptability and acceptance. We explain why we need to better explore (un)acceptable pain, to eventually facilitate pain assessment and management.

Methods

Using different approaches and perspectives (with examples and application from multiple disciplines, i.e. orthopaedics, psychology, pharmacological therapy), we discussed anecdotal examples and included a systematic, scoping and literature review.

Results

We rejected the idea that in the context of chronic pain, acceptability, disability and manageability overlap neatly. Additionally, we rejected the validity of pain intensity rating scales to sufficiently explore individuals' experience of pain. In the one study that met our criteria, a definition of ‘acceptable pain’ was dropped as participants deemed it inappropriate because it did not address the significant challenges associated with pain. This is important, however, because the acceptability of pain may precede, follow and/or inform the ‘pain acceptance’ process, which is an important concept associated with better outcomes.

Conclusions

Very little is known regarding what ‘acceptable pain’ may mean to people living with pain. Qualitative studies may improve our understanding of individuals' perceptions, perspectives and expectations as we do not know, for the moment, what ‘acceptable pain’ may mean to a particular person and, potentially, regarding a specific treatment or other contextual aspects that are not captured with currently used scores and quantitative measures.

Significance

What does ‘acceptable pain’ mean may differ between people with painful experiences and may depend on contextual factors. Pain acceptability may be distinct from manageability, and may precede, follow and/or inform the ‘pain acceptance’ process. This text, rigorously based on a review of the existing literature, defends the idea that acceptable pain should be better studied.     

Between hope and hopelessness: COPD patients' and their family members' experiences of interacting with healthcare providers – a qualitative longitudinal study

Background

Patient–family–healthcare provider interaction seems important for patients with chronic obstructive pulmonary disease (COPD ) and their family members' self‐management practices. Because the need for support might be enhanced after a hospitalisation, it might be beneficial to explore this interaction further in follow‐up health care.

Aim

To explore the meaning of patients' and their family members' experiences of interacting with healthcare providers to their daily self‐management over time.

Methods

Participant observations and in‐depth interviews were conducted repeatedly with 10 patients and seven family members during follow‐up visits at hospital and at the participants' homes between 2014 and 2016. A phenomenological–hermeneutical approach was used to interpret the data.

Results

‘Between hope and hopelessness’ involved frustrations, concerns and doubts, all of which could relate to the interaction with healthcare providers. ‘Seeking support from healthcare services’, ‘navigating between healthcare providers’ and ‘collaborating with healthcare providers at home’ could entail opportunities to strengthen self‐management and hope; however, it could also entail reduced faith in getting the right help and hopelessness.

Conclusion

During a period of transition after hospitalisation, available and well‐coordinated healthcare services, and alliances with healthcare professionals are crucial to COPD patients and their family members in terms of their self‐management, hope and well‐being.

     

Educator informed practice within a triadic preceptorship model

Preceptorships have long been a subject of scholarship with proven effectiveness in preparing nursing students to transition into beginning graduate nurses. Nursing research has predominantly focused on the dyadic preceptor–student relationship. The triadic pedagogical relationship between educator–student–preceptor has garnered less attention and inquiry. Nurse educators' experience in preceptorships is under reported. Through a process of scholarly inquiry, nurse educators from one western Canada School of Nursing documented their experiences and professional judgment in facilitating preceptorships over one semester. In the context of the anticipated exodus of nursing experts in the midst of rapidly changing healthcare delivery, this paper recommends a reemphasis on preceptorships as a triadic pedagogical relationship. Educator informed practices that foster triadic relationships in preceptorships include attending to distant relationships, being mindful of the influence of continuity, recognizing a preceptor's proficiency, responding to rapidly changing and complex environments, facilitating common understanding through communication, and integrating practice and education performance expectations.     

‘We don't have the answers’: What do we know about the experiences of psychological professionals providing virtual psychological support to people with intellectual disabilities during the COVID-19 pandemic?

Background

Government restrictions enforced globally in response to COVID-19 necessitated changes to the delivery of mental health services, with many psychology professionals (PPs) forced to transfer their face-to-face practice to virtual means (telephone/video therapy) overnight. This review explores what is known about the experiences of PPs providing psychological support to people with intellectual disabilities (PWID) during the pandemic.

Method

Literature was systematically searched and 11 papers were identified, critically appraised and thematically synthesised.

Results

Four themes were synthesised from findings: (1) ‘Impact at Service Level’, (2) ‘The Emotional Impact on PPs’, (3) ‘The Limitations of Virtual Support’, (4) ‘Unexpected Gains’.

Conclusions

This review highlights the challenges and positives in experiences of PPs, whilst acknowledging the inequalities experienced by PWID. It is hoped that the findings can be used to aid education and training, and inform future practice and policy. Future research is recommended.     

Living as a family in the midst of chronic illness

Aims and objectives

The aim of the study was to illuminate the meaning of lived experience of living as a family in the midst of chronic illness.

Background

Chronic illness implies a change for both the individual and the family. In this changed situation, all family members seem to benefit from sharing experiences and receiving support. Current research highlights the individual patient's or family member's perspectives on chronic illness, but family systems nursing (FSN) studies are warranted.

Design

A qualitative design with a FSN approach was chosen.

Method

Repeated qualitative narrative interviews with seven families living with chronic illness were performed. A phenomenological hermeneutic analysis, inspired by Ricoeur, was used to interpret the data.

Results

The phenomenon can be described as an ongoing movement towards well‐being. The results included two themes and five sub‐themes. The first theme was ‘Co‐creating a context for living with illness’ with the subthemes; ‘learning to live with the expressions of illness’ and ‘communicating the illness within and outside the family’. The second theme was ‘Co‐creating alternative ways for everyday life’ with the subthemes; ‘adapting to a new life rhythm’, ‘altering relationships’ and ‘changing roles and tasks in the family’.

Conclusions

Living as a family in the midst of chronic illness can be described as an ongoing process where the family members co‐create a context for living with illness. They also co‐create a context for alternative ways of everyday life.

Relevance to clinical practice

Knowledge about lived experience of living as a family in the midst of chronic illness can help nurses to adopt a FSN care perspective. This can increase the chances of taking advantage of the ways family members manage situations together, as well as highlight resources within the family.     

Correlates of treatment satisfaction and well‐being among patients with type II diabetes

Aim

To examine the impact of patient characteristics, anthropometric measurement and patient clinical variables on their appraisal of treatment satisfaction and well‐being.

Background

Treatment satisfaction and well‐being are instrumental in achieving diabetes care goals. Nursing practices and healthcare policies may inform interventions in these areas.

Introduction

The prevalence of diabetes is high in the Middle East. An understanding of relationships between clinical and socio‐demographic variables and well‐being and treatment satisfaction is needed to improve care and patient outcomes.

Methods

A total of 1002 patients completed tools measuring well‐being, treatment satisfaction and socio‐demographic characteristics. A series of bivariate and multivariate analysis were conducted to identify factors associated with well‐being and treatment satisfaction.

Results

Males reported better treatment satisfaction and well‐being than females. Older participants, those who were compliant to diet, with controlled diabetes, and no neuropathy reported higher treatment satisfaction scores and well‐being scores. Insulin therapy was associated with better treatment satisfaction.

Discussion

Females, participants who were not prescribed diabetic diets and those with complications were more likely to be negatively impacted by diabetes. Individuals with diabetes who were treated with insulin had higher treatment satisfaction than those who used oral hypoglycaemic agents.

Conclusion and implication for nursing and health policy

These findings are important in assisting nurses and other healthcare professionals in identifying patients with diabetes with low treatment satisfaction who may present a greater risk for poor well‐being. Additionally, they lend support to developing policies for frequent screenings and special therapeutic interventions that are needed to maximize patients’ treatment satisfaction and well‐being in the Middle East and elsewhere.     

Caregivers’ lived experience in trying to read slight movements in a child with severe brain injury: A phenomenological study

Aims and objectives

To explore caregivers’ lived experience of reading slight movements of a child with severe brain injury.

Background

Despite increased need, the development of individual care for children with severe brain injuries has been prevented by their severe physical state and the poor reproducibility of their movements. In addition to a lack of evidence on the motor characteristics of patients with severe brain injury with multiple disabilities, their own development contributes to increasing variability in their states. Thus, caregivers are compelled to rely on their experiences, which have not been academically explored.

Design

A qualitative study based on van Manen's method of hermeneutic phenomenology.

Methods

Data were obtained through twenty‐one 3‐hr observation sessions and five 15‐ to 45‐min group interviews. We observed a child (called AK) with severe brain injury and his 61 caregivers, and conducted group interviews with 28 caregivers. We focused on caregivers’ experiences of reading AK's slight movements. The data were interpreted based on van Manen's hermeneutic phenomenological approach.

Results

Four themes emerged as caregivers’ experience in trying to read AK's slight movements. By considering “AK's physical state and his slight movements” and discovering “caregivers’ ‘sense of uncertainty’ about AK's slight movements,” caregivers could decipher “AK's multiple slight movements.” “Sharing” was found as a necessary aspect of these other three themes of reading AK's slight movements.

Conclusions

We presented caregivers’ experiences as related to these four themes in their efforts to read the slight movements of AK. Due to AK's slight movements with poor reproducibility, “sharing” was necessary to read AK's slight movements, as it exposes caregivers’ lived experience to the interpretation of multiple caregivers.

Relevance to clinical practice

These four themes may be useful for assessing, guiding and promoting caregivers’ use of sharing when reading the slight movements of children with severe brain injury.     

Healthcare experiences of patients following faecal output stoma-forming surgery: A qualitative exploration

Background

Approximately 102,000 individuals live with an excretory stoma in the UK. Existing research shows huge variation in how individuals experience living with a new stoma but little is known of the individual experience of contemporary health care from the patient perspective.

Objective

To explore the individual experience of living with a new stoma and interactions with healthcare over time with the purpose of informing health care services.

Design

An existential phenomenological methodology underpinned interviews with twelve people with a new stoma at three, nine and fifteen months post-surgery. Ten healthcare professionals were interviewed on one occasion to provide adjunct data.

Methods

Open one-to one exploratory interviews lasting 35–90 min were conducted by one researcher using topic guides. A five-staged analytical framework facilitated iterative scrutiny of data to give a universal understanding of the experience.

Results

Three themes of healthcare experiences of people following stoma-forming surgery were identified: Relationships with health care professionals; being prepared; and regaining autonomy. They revealed how building a new sense of embodied self and increasing social confidence was facilitated by regaining physical capacity, mastering stoma function, purposeful care, and acceptance and support of others. Some conflict between the role of specialist and ward-based nurses is highlighted. Provision of responsive healthcare from all disciplines helped to establish patient self-determination in adaptation to and acceptance of self-with-a-stoma.

Conclusions

The study contributes to defining a plan of care that assists individuals with a new stoma to adapt to and accept a changed sense of embodied self. It highlights the powerful influence of health care professionals in facilitating this process through their knowledge, experience and individual approaches to care. There is an identified need for on-going review of the work of nurses and others providing care for patients following stoma-forming surgery. The findings of this UK study can have resonance with patient healthcare experiences in other countries, if, despite cultural differences in delegation of professional duties and responsibilities, the global aim is to facilitate meeting individual patient needs.     

Narrative inquiry as a research methodology exploring person centred care in nursing

Background

Although, person centred care has for a long time been an important approach to nursing care, it is often not a reality in the clinical environment. The focus of health research has, until recently, been on the physical aspects of a persons’ illness and this has influenced how care is delivered. There is a need to broaden the focus from the illness to the person who is ill. A holistic approach to the persons’ social and cultural experience of their illness will aid health care professions to provide person centred care.This paper will make the argument that narrative inquiry is a well suited to health care research in general and nursing research in particular as it focuses its inquiry on the individual person's experience of their illness – ‘what matters’ from the person's point of view. Narrative inquiry explores the narrative from a temporal, social and spatial view.

The phenomenological focus group: an oxymoron?

Title. The phenomenological focus group: an oxymoron?. Aim. In this paper we explore the congruence of focus group interviews within a phenomenological framework. Background. Focus groups as a research method are popular in nursing. Similarly, phenomenology is a dominant methodology for nurse researchers globally. A number of nurse researchers have combined focus groups and phenomenology, but there are others who argue that they are incompatible. Discussion. The argument against using focus groups in phenomenological research is that phenomenology seeks essential characteristics or ‘essences’ of phenomena in a manner that requires an individual to describe their experiences in an ‘uncontaminated’ way. We recognize that traditionally most phenomenological interviews are conducted with only one interviewer and one respondent, but we question whether this needs to continue. We suggest means by which individual lived experience can be preserved within a group context. We draw on our own experience and the phenomenological literature to argue that focus groups are congruent with phenomenological research and extend this argument further by proposing that group interviews in phenomenology are actually beneficial because they stimulate discussion and open up new perspectives. Our observation is that some researchers who combine focus groups and phenomenology appear to do so uncritically and we argue that this is unacceptable. Conclusions. It is important for nurse researchers to develop critical awareness of the research methodologies and methods they employ. We argue that the phenomenological focus group is not an oxymoron. Rather, the use of focus groups can provide a greater understanding of the phenomenon under study.     

“We all talk about it as though we’re thinking about the same thing.” Healthcare professionals’ goals in the management of pain due to advanced cancer: a qualitative study

Purpose

Unfortunately, several barriers impede successful management of cancer pain including those relating to the assessment and measurement of pain. There is currently no consensus as to what constitutes good pain control or what healthcare professionals are aiming to achieve in the management of pain for patients with advanced cancer. This study aimed to explore healthcare professionals’ views and experiences to elicit what they are aiming to achieve in managing pain for patients with advanced cancer.

Methods

Healthcare professionals involved in the management of cancer pain were sampled purposively and interviewed using a semi-structured interview technique until saturation of data. Data were analysed using the constant comparison approach.

Results

Sixteen interviews took place and four main themes emerged: aims of pain management, assessing response to pain management, managing expectations, and building relationships. Healthcare professionals found assessing patients’ pain challenging and reported that patients had difficulty using numerical rating scales. Healthcare professionals used different terms when talking about managing pain, such as ‘pain control’ but found it difficult to define these terms. Maintaining patients’ function and managing their expectations were described as important. However, it was not always clear whether the patient goals mentioned were voiced explicitly by the patient or assumed by the healthcare professional.

Conclusion

Healthcare professionals described what they deemed important in the management of pain. The goals they mentioned almost exclusively related to function as opposed to pain scores, but patients’ goals and expectations were often not elicited specifically.