Peter Lewis

How children’s rights are constructed in family-centred care: A review of the literature

It appears that the acceptance of children’s rights within the acute care setting is treated as a given but such a given requires a more systematic analysis. This has been undertaken here in the form of a review of the literature. The purpose of the review is to explore how children’s rights, defined by the United Nations Convention on the Rights of the Child (UNCRC) are recognized in family-centred care in the acute care paediatric setting as reported in the literature. Reports that were available from 1989 to 2010 were reviewed. Children’s rights are not mentioned frequently in the literature of interest to children’s nurses. What is revealed are the ethical tensions in the challenge to act at all times in children’s best interests (in the spirit of Article 3) while giving due weight to their views (in the spirit of Article 12) (OHCHR, 1989). The continuing failure to address these tensions undermines the spirit and practice of family-centred care.

Growing up with cancer: accommodating the effects of cancer into young people's social lives.

Adolescence and young adulthood are transitional periods of rapid and dramatic personal change. Few events can cause as unpredictable and challenging alterations to this process as the onset of a serious illness, such as cancer. Although we know much about the physical and psychological consequences of having cancer at this time, we know little about the effect of cancer on young people’s relationships. We conducted interviews with 15 women and 12 men aged between 16 and 29 years, who had survived cancer. Our findings demonstrate that the experience of cancer and how it affects relationships is complex. It arrests young people’s development by increasing their dependence on parents, giving them life experiences unavailable to peers, and complicating the process of establishing new relationships. However, it also accelerates development by facilitating closer and more mature relationships with parents and giving young people wisdom and insight not shared by peers. Cancer profoundly shapes how young people conduct their relationships. These changes require ongoing accommodation by young people with cancer, their parents, peers, and new acquaintances.

A narrative review of acute care nurses’ experiences nursing patients with intellectual disability: underprepared, communication barriers and ambiguity about the role of caregivers

AIMS AND OBJECTIVES To describe how nurses experience caring for people with intellectual disability in an acute care setting. BACKGROUND Recent advances in the care of people with intellectual disability in hospital are primarily based upon the experiences of people with intellectual disability and their caregivers. Little is known about the experiences of registered nurses caring for people with intellectual disability, yet the experiences of nurses in delivering care largely determine the quality of care experienced by people with intellectual disability and their caregivers. METHODS A narrative literature review using electronic database searches was conducted using variants of the terms disability, nursing and acute care. RESULTS Through our reading of the recent literature describing the experiences of nurses caring for people with intellectual disability in an acute care setting, we have identified three themes: (1) nurses feel underprepared when caring for patients with intellectual disability, (2) nurses experience challenges when communicating with people with intellectual disability and (3) nurses have ambiguous expectations of paid and unpaid caregivers. CONCLUSION The enablers of and barriers to the delivery of nursing care in acute care settings need to be made explicit and researchers and nurses need to collaborate in the development, implementation and evaluation of care delivery strategies. RELEVANCE TO CLINICAL PRACTICE Nurses need to be adequately prepared to care for people with intellectual disability. Preparation should include dealing with the complexities of communicating with people with intellectual disability and practical experience of doing so in clinical and educational environments that ensure the safety and dignity of nurses and people with intellectual disability. Nurses need supportive strategies for developing therapeutic relationships with a range of informal and formal caregivers.

Learning Action Learning: A Journey.

The action learning set (ALS) is an often-used tool in practice development to facilitate group reflection. As such, its use evolves in the hands of the participants as they become more comfortable with the process and as trust develops amongst group members. This paper aims to discuss the journey of one ALS over a 2-year period. It seeks to highlight the process of learning through an ALS and the complexity of making the process meaningful for the participants. The role of trust within an ALS cannot be overstated. This was an imperative factor in the overall effectiveness of the set.

Discursive constructions of youth cancer: findings from creative methods research with healthy young people

PurposeAs part of work to understand the experiences of young people who had cancer, we were keen to examine the perspectives of peers who share their social worlds. Our study aimed to examine how cancer in young people, young people with cancer and young cancer survivors are represented through language, metaphor and performance.MethodsWe generated data using creative activities and focus group discussions with three high school drama classes and used Foucauldian discourse analysis to identify the discursive constructions of youth cancer.ResultsOur analysis identified two prevailing discursive constructions: youth cancer as an inevitable decline towards death and as overwhelming personhood by reducing the young person with cancer to ‘cancer victim’.ConclusionsIf we are to understand life after cancer treatment and how to support young people who have been treated for cancer, we need a sophisticated understanding of the social contexts they return to. Discourses shape the way young people talk and think about youth cancer; cancer as an inevitable decline towards death and as overwhelming personhood is a key discursive construction that young people draw on when a friend discloses cancer.Implications for Cancer SurvivorsThe way cancer is constructed shapes how friends react to and relate to a young person with cancer. These constructions are likely to shape challenging social dynamics, such as bullying, that many young cancer survivors experience. Awareness of these discursive constructions can better equip young cancer survivors, their family and health professionals negotiate life after cancer.

A learning and teaching resource on patient self-management of chronic pain.

Objective. To develop, pilot test, and evaluate an instructional module on patient self-management for undergraduate pharmacy students in an Australian university. Design. Learning outcomes and associated content and assessment tasks were developed, featuring lecture and readings, in-class discussions, and online delivery of in-depth interviews with patients who were living with chronic pain. Assessment. Students completed a premodule and postmodule questionnaire and were further assessed by multiple-choice questions following completion of the module and again at the end of the semester. Positive changes were identified in the students’ discourse surrounding patient self-management of chronic pain. Responses to multiple-choice questions showed that knowledge was sustained over the course of the semester. Conclusions. Completion of a comprehensive module on patient self-management increased undergraduate pharmacy students’ understanding and knowledge of patients experiencing chronic pain. The module could be implemented across other healthcare disciplines.

Parenthood in young cancer survivors is more than a combination of motivation and capacity

Schmidt et al. (2016) recently reviewed published literature on the reproductive intentions and parenthood motivations of cancer survivors. The authors highlight cancer survivors’ incentives for entering parenthood and concerns about having children post-diagnosis. This welcome addition to the literature on parenthood in survivors of cancer in adolescence and young adulthood throws into sharp relief an important gap in current research: the experiences of cancer survivors who do become parents after cancer diagnosis. Between 1998 and 2004, the relative survival rate for Australians aged 12–24 years diagnosed with cancer was 85% (AIHW 2011). In theory, most of these young survivors had many years to consider and/or become parents.