Moira O'Connor

The Fundamental Paradox in the Grief Literature: A Critical Reflection

A key theme in the bereavement literature is the recognition that every grief experience is unique and dependent on many variables, such as the circumstances of the death, characteristics of the bereaved individual, their relationship with the deceased, the provision and availability of support, and a myriad of sociocultural factors. Concurrently, there are corresponding efforts to define “normal” grief and delineate it from “complicated” grief experiences. The discord between these two potentially opposing statements remains a paradox evident within the three major tensions within the thanatological literature—the dominance of grief theories, the medicalization of grief, and the efficacy of grief interventions. Three recommendations for moving beyond the paradox are discussed—the provision of improved grief education for service providers, the bereaved, and the wider community; the conduct of research that emphasizes the context of grief and is relevant to service provision; and the examination of current grief interventions.

Reducing the psychological distress of family caregivers of home based palliative care patients: longer term effects from a randomised controlled trial

Background: Palliative care incorporates comprehensive support of family caregivers because many of them experience burden and distress. However, evidence‐based support initiatives are few.

Reducing the psychological distress of family caregivers of home-based palliative care patients: short-term effects from a randomised controlled trial: Reducing psychological distresses of family caregivers

Palliative care is expected to incorporate comprehensive support for family caregivers given that many caregivers suffer psychological morbidity. However, systematically implemented evidence‐based psychological support initiatives are lacking.

‘‘Motherhood’’ in the Context of Living With Breast Cancer

Background: Breast cancer is the most commonly diagnosed cancer among women in Western Australia, with negative psychological impacts exacerbated for younger women. Many women survive 5 years following diagnosis, suggesting more young women and their families will be living with its ongoing effects for longer periods. Diagnosis and treatment impact a woman’s identity as a mother, but limited research exists from the women’s perspective. Objective: The aim of the study was to explore the impact of breast cancer on the identities of young women as “mothers.” Methods: A qualitative research design using conversational in-depth interviews and guided by a social constructivist paradigm was used. In-depth interviews were undertaken with 8 young women who were living with breast cancer and had dependent children. Interviews were audiotaped, transcribed, and analyzed. Results: Biographical disruption as described by Bury provided the analytical framework for interpretation of data. Four themes, “diagnosis and disruption,” “maintaining normality,” “continuing the mothering role,” and “experiencing survivorship,” reflect women’s experiences of identity reconstruction in the context of living with breast cancer. Conclusions: A breast cancer diagnosis precipitates complex changes in a woman’s identity as a mother. A woman’s postdiagnosis identity invariably integrates a changed prediagnosis identity and that of “breast cancer patient” and “survivor.” The relationship between the 3 is dynamic and in constant tension. Implications for Practice: Routine practice should include acknowledgement that an identity as mother exists alongside “patient.” Questions to women about children and any concerns and issues they may have should also be routine.

Relationships between quality of life, spiritual well-being, and psychological adjustment styles for people living with leukaemia: An exploratory study

This paper reports on the relationships between quality of life, spiritual well-being, and psychological adjustment styles for people living with leukaemia. Participants were 40 adults (26 women and 14 men) aged between 22 and 80 years living with acute or chronic leukaemia in Western Australia. Participants completed three scales measuring spiritual well-being (FACIT-Sp-12-C Version 4; Cella, 1997), psychological adjustment styles (MAC; Watson, Greer, & Bliss, 1989), and quality of life (FACIT-G; Cella, 1997). No differences were found between the men and women participants, with the exception of the anxious preoccupation adjustment style. Significant positive correlations were found between spiritual well-being and quality of life (r = 0.72, p = <0.01), and between fighting spirit and both spiritual well-being (r = 0.55, p < 0.01) and quality of life (r = 0.67, p < 0.01). Spiritual well-being and quality of life were both significantly negatively correlated with hopelessness/helplessness, fatalism, and anxious preoccupation, suggesting that people who are able to find meaning in their illness are more likely to utilize functional psychological adjustment styles. A stepwise multiple regression revealed that spiritual well-being was most strongly associated with quality of life for people living with leukaemia, followed by a fighting spirit; together, these accounted for 61% of the variance in quality of life scores. Thus, having a reason for living, making life more productive, finding comfort in faith or spiritual beliefs, being determined to control the environment, and feeling a sense of meaning, peace, harmony, purpose, and comfortable in oneself are factors that contribute to a better quality of life among patients with leukaemia. Strengths, limitations, and implications of the findings are discussed.

Mapping the psychosocial and practical support needs of cancer patients in Western Australia

Understanding the unmet needs of cancer patients is important for developing and refining services to address the identified gaps in cancer care. In order to describe the psychological and practical support needs of Western Australians with cancer, the Western Australian Cancer Registry was used to identify a sample of individuals with cancer. These individuals were then invited to complete the Supportive Care Needs Survey (SCNS-LF59) and a demographic questionnaire. Data from participants who completed and returned both questionnaires were analysed using descriptive statistics, chi-square tests and one-way anova. Of the 1770 participants identified and contacted, a total of 829 individuals (47% response) completed the SCNS-LF59 alone, and 786 (94.8%) completed both questionnaires. Overall, a substantial minority of Western Australian cancer patients reported unmet needs, primarily in the psychological and physical and daily living domains. Disease-specific needs were also identified for the five most common cancer groups in Australia; for example, prostate cancer patients had unmet needs relating to sexuality, and melanoma patients had unmet informational needs. Cancer services need to look at how best to tailor resources and interventions to meet these needs of specific cancer subpopulations.

Follow-up of breast cancer patients: Preliminary findings from nurse-patient consultations and patient surveys

BACKGROUND: Although clinicians in both primary and tertiary care settings are involved in the care of breast cancer patients following the active treatment phase, few studies report how patients interact with health care providers.METHODS: Participants in this breast cancer follow-up study were recruited from a hospital based nurse-led follow-up clinic in Western Australia. Methods included audio taped, transcribed consultations with Specialist Breast Nurses (SBNs) and patient self-completed surveys.RESULTS: Preliminary data suggest that SBNs play an important role in supporting women to deal with the impact of breast cancer in the years following active treatment. The data suggest that the process of adjustment to a diagnosis of cancer continues for many years after the treatment has ceased. In many cases the women require on-going support to recalibrate their response to normal physical changes that may or may not be a consequence of surgery, radiotherapy and chemotherapy.

Bridging the gaps in palliative care bereavement support: An international perspective

A review of palliative care policies and bereavement support practices in the United States, Canada, United Kingdom, Australia, and Japan demonstrated 4 challenges: questions over providing universal versus targeted support; a lack of clear evidence driving service delivery; informal or no risk assessment; and limited or no evaluation of services. Bridging the gaps between the policy and practice of palliative care bereavement support requires acknowledging the challenges of medical and public health models, improving bereavement need assessment processes, enhancing the role of primary care providers, and extending research to provide an evidence-base for interventions.

A scoping review of bereavement risk assessment measures: Implications for palliative care

Background: Palliative care standards and policies recommend that bereavement support be provided to family caregivers, yet uncertainty surrounds whether support currently offered by palliative care services throughout developed countries meets caregiver needs. The public health model of bereavement support, which aligns bereavement support needs with intervention, may address this gap between policy and practice. Aim: The aim was to review the literature to identify bereavement risk assessment measures appropriate for different points in the caring and bereavement trajectories, evaluate their psychometric properties and assess feasibility for use in palliative care. Design: A scoping review was systematically undertaken following Arksey and O’Malley’s methodological framework. Data sources: PsycINFO, CINAHL, PubMed and Cochrane Reviews databases, as well as grey literature including Internet searches of Google, World Health Organization, CareSearch, the Grey Literature Report and OAIster were searched. Bereavement organisations and palliative care websites, reference lists in obtained articles and grief and bereavement handbooks were also scrutinised. Results: Of 3142 records screened, 356 records yielded 70 grief measures. In all, 19 measures published between 1982 and 2014 were identified for inclusion in this review, and categorised for use with family caregivers at three points in time – before the patient’s death (n = 5), in the period following the death (n = 10) and for screening of prolonged or complex grief (n = 4). The majority had acceptable psychometric properties; feasibility for use in palliative care varied substantially. Conclusion: This review is an important preliminary step in improving the assessment of bereavement risk and, consequently, better bereavement outcomes for palliative care family caregivers.

Pilot randomised controlled trial of a radiation therapist-led educational intervention for breast cancer patients prior to commencing radiotherapy

PurposeAlthough patients receive information prior to commencing radiotherapy, they often experience anxiety and distress. We conducted a pilot randomised controlled trial to determine whether a radiation therapist led psycho-educational intervention for breast cancer patients prior to radiotherapy is likely to be effective in reducing radiotherapy-related concerns, patient anxiety and depression.MethodsThe intervention comprised two face-to-face consultations with a radiation therapist (one prior to radiation planning and the other prior to treatment). Patients completed surveys at baseline, prior to treatment planning and on the first day of treatment. Outcome measures included the Hospital Anxiety and Depression Scale, Radiation Therapy Related Patient Concerns and Radiation Therapy Knowledge Scales.ResultsOne hundred and twenty two patients completed baseline measures. Fifty-eight patients received usual care, and 64 received the intervention. After the first consultation, patient anxiety was significantly lower in the intervention group (p = 0.048), as were concerns about radiotherapy (p = 0.001). There were no differences between groups for depression. Patient knowledge for the intervention group was higher after the first consultation (p < 0.001).ConclusionThis intervention is likely to be effective in reducing patient anxiety and concerns and increasing knowledge. Future research is required to test this intervention with a larger population.