Supporting family caregivers with palliative symptom management: A qualitative analysis of the provision of an emergency medication kit in the home setting

Purpose The purpose of this qualitative analysis was to examine the experiences of family caregivers supporting a dying person in the home setting. In particular, it explores caregivers’ perceptions of receiving palliative care at home when supplied with an emergency medication kit (EMK). Results Most family caregivers described preexisting medication management strategies that were unable to provide timely intervention in symptoms. The EMK was largely viewed as an effective strategy in providing timely symptom control and preventing readmission to inpatient care. Caregivers reported varying levels of confidence in the administration of medication. Conclusion The provision of an EMK is an effective strategy for improving symptom control and preventing inpatient admissions of home-dwelling palliative care patients.

The use of emergency medication kits in community palliative care: An exploratory survey of views of current practice in Australian home-based palliative care services

Improving symptom management for palliative care patients has obvious benefits for patients and advantages for the clinicians, as workload demands and work-related stress can be reduced when the emergent symptoms of patients are managed in a timely manner. The use of emergency medication kits (EMKs) can provide such timely symptom relief. The purpose of this study was to conduct a survey of a local service to examine views on medication management before and after the implementation of an EMK and to conduct a nationwide prevalence survey examining the use of EMKs in Australia. Most respondents from community palliative care services indicated that EMKs were not being supplied to palliative care patients but believed such an intervention could improve patient care.

Once more into the mire, dear friends : determining the existence of a duty of care in negligence

There were signs in the 1997 High Court decision in Hill v Van Erp that the different members of the bench were beginning to move in the same direction when it came to the tort equivalent of the search for the Holy Grail, a common approach to the determination of the existence of a duty of care in negligence. However, the court's subsequent decision in Perre v Apand signaled a slide back to uncertainty with the seven judges favouring five different approaches. This Note examines those five approaches in the search for guidance for those at the "coalface" - litigants, their legal advisers and trial judges.

Prevalence, predictors, and correlates of supportive care needs among women 3–5 years after a diagnosis of endometrial cancer

Purpose The purpose of this study is to examine the prevalence, sociodemographic and clinical predictors, and physical and psychosocial correlates of unmet needs among women 3–5 years following treatment for endometrial cancer. Methods Women with endometrial cancer completed a survey around the time of diagnosis and again 3–5 years later. The follow-up survey asked women about their physical and psychosocial functioning and supportive care needs (CaSUN). Multivariable-adjusted logistic regression identified the predictors and correlates of women’s unmet needs 3–5 years after diagnosis. Results Of the 629 women who completed the cancer survivors’ unmet needs measure (CaSUN), 24 % (n = 153) women reported one or more unmet supportive care needs in the last month. Unmet needs at 3–5 years post-diagnosis were predicted by younger age (OR = 4.47; 95 % CI: 2.09–9.56) and advanced disease stage at diagnosis (OR = 2.47; 95 % CI: 1.38–4.45) and correlated with greater cancer symptoms (OR = 1.78; 95 % CI: 1.05–3.02), lower limb swelling (OR = 2.50; 95 % CI: 1.51–4.15), symptoms of anxiety (OR = 2.21; 95 % CI: 1.31–3.72), and less availability of social support (OR = 3.42; 95 % CI: 1.92–6.11). Women with a history of comorbidities (OR = 0.47; 95 % CI: 0.27–0.82) and those living in a rural area at the time of diagnosis (OR = 0.56; 95 % CI: 0.34–0.92) were less likely to report unmet needs. Conclusions Sociodemographic, health, and psychosocial factors seem important for identifying women who will or will not have unmet needs several years following endometrial cancer. Longitudinal assessments of people’s needs over the course of their cancer trajectory may be an effective way to identify areas that should receive further attention by health providers.

Speaking to the deceased child : Australian Health Professional perspectives in paediatric end-of-life care

Supporting a dying child and family surrounding the child’s death is one of the most significant and challenging roles undertaken by health professionals in paediatric end of life care. An Australian study of parent and health professional constructions of meanings around post mortem care and communication revealed the practice of health professionals speaking to a child after death. This practice conveyed respect for the personhood of the deceased child, recognised the presence of the deceased child, and assisted in involving parents in their child’s post-mortem care. Such findings illuminate an area of end of life care practice that is not often addressed. Talking to a deceased child appeared as a socially symbolic practice that may promote a continued bond between parent and child.

“You could scream the place down”: Five poems on the experience of aged care

This article presents five poems constructed from interviews with older people adjusting to living in residential aged care. They are part of the “Inside Aged Care” project, on-going longitudinal phenomenological research tracking the lived experience of aged care from the perspective of residents, family members and service providers. Poetry, through the process of poetic transcription, provided an engaging, evocative and almost visceral way to help us appreciate what it might be like to be ageing in aged care. To date, despite a growing body of work documenting the importance and impact of research in the form of poetry, applying a literary lens is rare in gerontological research. At a very practical level, therefore, we hope these poems help older people, their families, students and those working in aged care better understand the unique world and perspective of new aged care residents.

Using qualitative mixed methods to study small health care organizations while maximising trustworthiness and authenticity

Background The primary health care sector delivers the majority of health care in western countries through small, community-based organizations. However, research into these healthcare organizations is limited by the time constraints and pressure facing them, and the concern by staff that research is peripheral to their work. We developed Q-RARA—Qualitative Rapid Appraisal, Rigorous Analysis—to study small, primary health care organizations in a way that is efficient, acceptable to participants and methodologically rigorous. Methods Q-RARA comprises a site visit, semi-structured interviews, structured and unstructured observations, photographs, floor plans, and social scanning data. Data were collected over the course of one day per site and the qualitative analysis was integrated and iterative. Results We found Q-RARA to be acceptable to participants and effective in collecting data on organizational function in multiple sites without disrupting the practice, while maintaining a balance between speed and trustworthiness. Conclusions The Q-RARA approach is capable of providing a richly textured, rigorous understanding of the processes of the primary care practice while also allowing researchers to develop an organizational perspective. For these reasons the approach is recommended for use in small-scale organizations both within and outside the primary health care sector.

Incidence, risk factors and estimates of a woman's risk of developing secondary lower limb lymphedema and lymphedema-specific supportive care needs in women treated for endometrial cancer

Objectives: Few studies have assessed the risk and impact of lymphedema among women treated for endometrial cancer. We aimed to quantify cumulative incidence of, and risk factors for developing lymphedema following treatment for endometrial cancer and estimate absolute risk for individuals. Further, we report unmet needs for help with lymphedema-specific issues. Methods: Women treated for endometrial cancer (n = 1243) were followed-up 3–5 years after diagnosis; a subset of 643 completed a follow-up survey that asked about lymphedema and lymphedema-related support needs. We identified a diagnosis of secondary lymphedema from medical records or self-report. Multivariable logistic regression was used to evaluate risk factors and estimates. Results: Overall, 13% of women developed lymphedema. Risk varied markedly with the number of lymph nodes removed and, to a lesser extent, receipt of adjuvant radiation or chemotherapy treatment, and use of nonsteroidal anti-inflammatory drugs (pre-diagnosis). The absolute risk of developing lymphedema was > 50% for women with 15 + nodes removed and 2–3 additional risk factors, 30–41% for those with 15 + nodes removed plus 0–1 risk factors or 6–14 nodes removed plus 3 risk factors, but ≤ 8% for women with no nodes removed or 1–5 nodes but no additional risk factors. Over half (55%) of those who developed lymphedema reported unmet need(s), particularly with lymphedema-related costs and pain. Conclusion: Lymphedema is common; experienced by one in eight women following endometrial cancer. Women who have undergone lymphadenectomy have very high risks of lymphedema and should be informed how to self-monitor for symptoms. Affected women need greater levels of support.

Adverse breast cancer treatment effects: The economic case for making rehabilitative programs standard of care

Purpose: The purpose of this work was to evaluate the patient-borne financial cost of common, adverse breast cancer treatment-associated effects, comparing cost across women with or without these side-effects. Methods: 287 Australian women diagnosed with early-stage breast cancer were prospectively followed starting at six months post-surgery for 12 months, with three-monthly assessment of detailed treatment-related side effects and their direct and indirect patient costs attributable to breast cancer. Bootstrapping statistics were used to analyze cost data and adjusted logistic regression was used to evaluate the association between costs and adverse events from breast cancer. Costs were inflated and converted from 2002 Australian to 2014 US dollars. Results: More than 90% of women experienced at least one adverse effect (i.e. post-surgical issue, reaction to radiotherapy, upper-body symptoms or reduced function, lymphedema, fatigue or weight gain). On average, women paid $5,636 (95%CI: $4,694, $6,577) in total costs. Women with any one of the following symptoms (fatigue, reduced upper-body function, upper-body symptoms) or women who report ≥4 adverse treatment-related effects, have 1.5 to nearly 4 times the odds of having higher healthcare costs than women who do not report these complaints (p<0.05). Conclusions: Women face substantial economic burden due to a range of treatment-related health problems, which may persist beyond the treatment period. Improving breast cancer care by incorporating prospective surveillance of treatment-related side effects, and strategies for prevention and treatment of concerns (e.g., exercise) has real potential for reducing patient-borne costs.

Barbara's story : a thematic analysis of a relative's reflection of being in the intensive care unit

Aim The aim of this reflective account is to provide a view of the intensive care unit (ICU) relative’s experiences of supporting and being supported in the ICU. Background Understanding the relatives’ experiences of ICU is important especially because a recent work has identified the potential for this group to develop post-traumatic stress disorder, a condition that is normally equated with the ICU survivor. Design A thematic analysis was used in identifying emerging themes that would be significant in an ICU nursing context. Setting The incident took place in two 8-bedded ICUs (Private and National Health Service) in October. Results Two emergent themes were identified from the reflective story – fear of the technological environment and feeling hopeless and helpless. Conclusion The use of relative stories as an insight into the live experiences of ICU relatives may give a deeper understanding of their life-world. The loneliness, anguish and pain of the ICU relative extends beyond the walls of the ICU, and this is often negated as the focus of the ICU team is the patient. Relevance to clinical practice: Developing strategies to support relatives might include the use of relative diaries used concurrently with patient diaries to support this groups recovery or at the very least a gaining a sense of understanding for their ICU experience. Relative follow-up clinics designed specifically to meet their needs where support and advice can be given by the ICU team, in addition to making timely and appropriate referrals to counselling services and perhaps involving spiritual leaders where appropriate.

Alarm setting for the critically ill patient : A descriptive pilot survey of nurses’ perceptions of current practice in an Australian Regional Critical Care Unit

Aim: The aim of this survey was to assess registered nurse’s perceptions of alarm setting and management in an Australian Regional Critical Care Unit. Background: The setting and management of alarms within the critical care environment is one of the key responsibilities of the nurse in this area. However, with up to 99% of alarms potentially being false-positives it is easy for the nurse to become desensitised or fatigued by incessant alarms; in some cases up to 400 per patient per day. Inadvertently ignoring, silencing or disabling alarms can have deleterious implications for the patient and nurse. Method: A total population sample of 48 nursing staff from a 13 bedded ICU/HDU/CCU within regional Australia were asked to participate. A 10 item open-ended and multiple choice questionnaire was distributed to determine their perceptions and attitudes of alarm setting and management within this clinical area. Results: Two key themes were identified from the open-ended questions: attitudes towards inappropriate alarm settings and annoyance at delayed responses to alarms. A significant number of respondents (93%) agreed that alarm fatigue can result in alarm desensitisation and the disabling of alarms, whilst 81% suggested the key factors are those associated with false-positive alarms and inappropriately set alarms.

Maternal employment, work experiences, and financial well-being of Australian mothers who care for young children with special health care needs

The employment and work experiences of mothers who care for young children with special health care needs is the focus of this study. It addresses a gap in the research literature, by providing an understanding of how mothers’ caring role may affect employment conditions, family life, and financial well-being. Quantitative data are drawn from Growing Up in Australia: The Longitudinal Study of Australian Children. The current study employs a matched case–control methodology to compare the experiences of a group of 292 mothers whose children (aged 4-5 years) with long-term special health care needs with those mothers whose children were typically developing. There were few differences between the two groups with regard to job characteristics and job quality. There were significant differences between the two groups with regard to work–family balance. Fewer mothers with children with special health care needs reported work having a positive effect on family functioning.

Visual narratives and counter-narratives in aged care : Centring the participant as photographer in social science research

As detailed by a number of scholars (Emmison & Smith, 2000, 2012; Harrison, 1996, 2002, 2004), photographs and the process of photographing can provide fertile ground for sociological investigation. Examining the production of photography can tell us much about inclusion/omission and power/knowledge in a variety of social settings. Recently, some researchers have begun to utilise the participatory action research methodology, PhotoVoice, where people take and share photographs as a means of communicating and advocating on a specific topic. While medical sociologists have used PhotoVoice to communicate the impacts of disease in vulnerable populations (eg Burles, 2010), little social research has been done that combines PhotoVoice and older persons. This is interesting given the world’s population is ageing and the general lack of research that examines what daily life is like for older people living in aged care (Timonen & O’Dwyer, 2009). In response, a recent project tracked 10 participants who recently transitioned into living in residential aged care (RAC). The project combined the use of PhotoVoice methodology with repeated in-depth interviews. Residents were asked to orally and visually describe the positives and negative aspects of their daily lives. In the first instance, they shared the use of a RAC owned camera and later had the opportunity to access a camera for their sole use. Photographic analysis emphasised the value of centring the participant as an autonomous photographer in social research. In the photographs captured on a shared use camera, the photographs tended to depict predominately positive life stories (e.g. weekly morning tea outings, social activities). In comparison, the photographs captured on the sole use camera also described intimate but everyday activities, spaces, objects and people that frequented in their daily lives. Shifting the responsibility of the camera and photography solely to the participants resulted in the residents disrupting conventions of ‘suitable’ subject matter to photograph (Harrison, 2004) and in doing so, provided a much richer insight into what daily life is like in aged care.