Carol Grbich

Patients’ and family members’ views on how clinicians enact and how they should enact incident disclosure: the “100 patient stories” qualitative study

Objectives To investigate patients’ and family members’ perceptions and experiences of disclosure of healthcare incidents and to derive principles of effective disclosure. Design Retrospective qualitative study based on 100 semi-structured, in depth interviews with patients and family members. Setting Nationwide multisite survey across Australia. Participants 39 patients and 80 family members who were involved in high severity healthcare incidents (leading to death, permanent disability, or long term harm) and incident disclosure. Recruitment was via national newspapers (43%), health services where the incidents occurred (28%), two internet marketing companies (27%), and consumer organisations (2%). Main outcome measures Participants’ recurrent experiences and concerns expressed in interviews. Results Most patients and family members felt that the health service incident disclosure rarely met their needs and expectations. They expected better preparation for incident disclosure, more shared dialogue about what went wrong, more follow-up support, input into when the time was ripe for closure, and more information about subsequent improvement in process. This analysis provided the basis for the formulation of a set of principles of effective incident disclosure. Conclusions Despite growing prominence of open disclosure, discussion about healthcare incidents still falls short of patient and family member expectations. Healthcare organisations and providers should strengthen their efforts to meet patients’ (and family members’) needs and expectations.

Parental food allergy information needs: a qualitative study

Objective: To examine information needs and preferences of parents regarding food allergy. Design: Qualitative study including in-depth semi-structured interviews and focus group discussions. Data were audio-recorded, transcribed verbatim and analysed using the constant comparative method, aided by participant checking of interview summaries, independent reviewers and qualitative analysis software. Participants: 84 parents of children with food allergy. Setting: Three paediatric allergy clinics and a national consumer organisation. Results: Most parent participants had received third level education (72%) and 39% had occupational backgrounds in health and education. Parents experienced different phases in their need for information: at diagnosis when there is an intense desire for information, at follow-up when there is continuing uncertainty about allergy severity and appropriate management, and at new events and milestones. They preferred information to be provided in a variety of formats, with access to reliable individualised advice between clinic appointments, within the context of an ongoing relationship with a health professional. Parents wished to know the reasoning behind doctor’s opinions and identified areas of core information content, including unaddressed topics such as what to feed their child rather than what to avoid. Suboptimal information provision was cited by parents as a key reason for seeking second opinions. Conclusion: Parents with children with food allergies have unmet information needs. Study findings may assist in the design and implementation of targeted educational strategies which better meet parental needs and preferences.

Identification of patients with noncancer diseases for palliative care services

OBJECTIVE To identify criteria for measuring the eligibility of patients with end-stage noncancer diseases for palliative care services in Australian residential aged care facilities. METHODS No validated set if guidelines were available so five instruments were used: an adaptation of the American National Hospice Association Guidelines; a recent adaptation of the Karnofsky Performance Scale; the Modified Barthel Index; the Abbey Pain Score for assessment of people who are nonverbal and a Verbal Descriptor Scale, also for pain measurement. In addition, nutritional status and the presence of other problematic symptoms and their severity were also sought. RESULTS The adapted American National Hospice Association Guidelines provided an initial indicative framework and the other instruments were useful in providing confirmatory data for service eligibility and delivery.

Documenting end of life decisions in residential aged care facilities in South Australia

Objective:

The academic researcher: Socialisation in settings previously dominated by teaching

Qualitative case studies of two multidisciplinary health science departments from different universities in Australia were undertaken to identify the experiences which beginning and early career researchers perceived had facilitated or inhibited their development as researchers during the first five years post amalgamation into university settings. Results were viewed using modernist and post modernist interpretations of organisational socialisation. A modernist interpretation indicated that the production of a successful academic researcher was linked to the creative intersection of person, department and institution, where individual motivation, a supportive, stable and adequately resourced environment, accessible skills and the opportunity for collaborative research were clearly of importance. A postmodernist interpretation, which celebrates diversity and creativity and values dynamism revealed the ambiguity and resistance which was present in the two settings but had the capacity to interpret this in a positive manner.

Communication and Information Needs of Care-Givers of Adult Family Members at Diagnosis and during Treatment of Terminal Cancer

Abstract A four-stage qualitative investigation of the communication and information needs of care-givers at the time of diagnosis of a family member with a terminal cancer and during disease progression found ‘paternalistic’ and ‘informative’ models dominated in practitioner-client relationships. Both patients and care-givers indicated that they preferred a model of interaction which allowed an equal weighting of medical facts and individual familial values with neither dominating the exchange.

Communication and decision making for patients with end stage diseases in an acute care setting

Abstract Twenty retrospective patient case studies were collated in an acute care teaching hospital using a case note audit and in addition interviews were undertaken with 40 nursing staff following the deaths of these patients in order to: analyse the end of life care received; identify any deficits in care provision and to enable the nursing division to target any inadequacies in care found. Findings indicated that communication between medical and nursing staff and between nursing staff, patients and family around end of life issues continue to be poor and that discussions regarding NFR decisions occurred too close to death, creating unnecessary stress for both patients and families. Recommendations regarding palliative approaches in the acute care setting are detailed.

When doctors disagree: a qualitative study of doctors’ and parents’ views on the risks of childhood food allergy

Objective  To examine the views of doctors which underpin clinical practice variation concerning an uncertain health risk, and the views of parents who had sought advice from these doctors, using the example of childhood food allergy.

Family caregivers, their needs, and home-based palliative cancer services

The focus of this four-stage, longitudinal, qualitative, and quantitative study was to explore, from the caregivers perspective, the impact of caring for a person with a diagnosis of terminal cancer, in order to improve the planning and coordination of home-based hospice services in Australia. Caregivers identified five primary-care needs relating to lack of information and ineffective communication with health professionals, inadequate emotional support, the need for assistance with physical care and household tasks, support for caregiver health and social wellbeing, and financial issues. The extent to which current service provision met each of these needs varied. The findings of this study suggest that if palliative care is to be shifted to the home environment, improvement in services concerned with providing support for family caregivers is essential if existing guidelines for palliative care provision are to be met.

Palliative care in aged care facilities for residents with a non-cancer disease: results of a survey of aged care facilities in South Australia

Objectives:  This study reports the results of a cross‐sectional study of residential aged care facilities in South Australia which sought to quantify the extent of specialist palliative care involvement in residential aged care facilities as well as identifying the current need for palliative care.