Carrie Lethborg

To what extent does meaning mediate adaptation to cancer? The relationship between physical suffering, meaning in life, and connection to others in adjustment to cancer

OBJECTIVES This study builds on previous work that explored the lived experience of meaning in advanced cancer. The aims were to explore the associations of suffering (physical and existential distress) and coping (via social support) with psychological distress and global meaning using a battery of instruments among adults attending an Australian metropolitan cancer service (n=100). METHODS The contribution of suffering and coping via social support to psychological distress and meaning were examined using a variety of statistical methods. Multiple regression analyses were conducted to further examine relative contributions to both psychological distress and global meaning. RESULTS Physical and existential distress were found to be positively associated with psychological distress whereas high social support and personal meaning are related to lower levels of psychological distress. Social support was the strongest correlate of global meaning whereas high levels of existential distress were related to lower levels of global meaning. On the basis of this study, it is concluded that the factors related to suffering clearly promote psychological distress, and the reverse is true for global meaning for those living with cancer. SIGNIFICANCE OF RESULTS This study speaks to the clinical complexity of the dynamic experience of suffering and meaning in cancer. We need to better understand the impact of physical suffering and meaning in the lives of this population and to actively work toward the enhancement of social support and connection with others for this group. Optimal palliative and family-centered care blended with therapies that promote a sense of meaning of life lived appear crucial to ameliorate suffering.

“Cast Adrift”: The Experience of Completing Treatment Among Women with Early Stage Breast Cancer

A clear percentage of women with early breast cancer cope with the active period of treatment and then struggle to adjust as medical support becomes less intensive. This study highlights issues that can arise in a phase of illness relatively neglected previously. Recognition of the needs of women at completion of adjuvant chemotherapy and radiotherapy necessitates a new approach to delivery of care with a targeted intervention that specifically addresses their adjustment to potential survivorship.

Palliative and supportive care needs of patients with high-grade glioma and their carers: A systematic review of qualitative literature

OBJECTIVE Patients diagnosed with primary malignant glioma (PMG) face substantial challenges with poor prognosis, high symptom burden and care needs. This study aims to collate current literature detailing the supportive and palliative care needs of patients with PMG and their carers, and to subject it to a novel approach of formal evaluation. METHODS Medline, EMBASE, CINAHL, PsychInfo were searched with core concepts: (1) glioma, (2) high-grade disease, and (3) palliative and supportive care needs. A narrative synthesis approach was undertaken including a quality appraisal of the 21 included studies. RESULTS Key themes related to the need for consistent well-delivered information around disease sequelae, treatment, and resources available; health service needs including a key professional identified to coordinate care; the need for psychological and social supports, and clear avenues of communication with treating professionals. CONCLUSION The literature remains limited in the number and quality of evidence with two level I, eight level II, and eleven level III studies. The findings call for improved information, communication and support practices to address the complexity and breadth of needs. PRACTICE IMPLICATIONS Specialised and individually tailored information, attention to clear, consistent communication and support practices should be incorporated into a future needs-based model of care.

Meaning in adjustment to cancer: A model of care

OBJECTIVES In the clinical setting of cancer, meaning may well have a central role in the life changes the illness experience brings about. As health care professionals working with people with life-threatening illness, we are exposed to one of the major turning points in life and the ways people confront this transition. Meaning can assist coping by offering a framework, perspective, and counterbalance to the challenge of illness. However, the absence of meaning can be a precursor to profound despair. METHODS This article brings together the clinical implications of two studies conducted by the authors that explored the role of meaning in adjustment to cancer, presenting a theoretical understanding of the experience of meaning in cancer and identifying some potential approaches to intervention. RESULTS Our findings point to some specific goals of care as well as a number of therapeutic modalities aimed to meet these goals. We examine four goals of care--acknowledging suffering, encouraging a search for meaning, strengthening connection with others, and ensuring optimal physical care--as foundational in any clinical approach and then examine the key models of therapy that assist the clinician in pursuing these goals. SIGNIFICANCE OF RESULTS Our aim is to create an integrated approach to care provision that locates meaning centrally in any patients adaptation.

I'm just waiting…: an exploration of the experience of living and dying with primary malignant glioma

PurposeReferral to supportive and palliative care services for people with high-grade primary malignant glioma (PMG) often occurs late in the illness course, despite significant care needs and overall poor prognosis. This study aimed to understand patient experience at the end of life and document supportive and palliative care needs.MethodsA qualitative study was conducted involving ten PMG patients who were at different stages in the illness course including the end of life and had varying levels of physical and cognitive function. Consecutive, eligible patients attending neurosurgery, oncology, and palliative care services of two metropolitan hospitals were recruited. In-depth interviews explored supportive and palliative care needs across the disease trajectory. Interviews were analysed independently by three investigators consistent with a grounded theory approach, and emerging ideas were compared and refined to define key patient experiences.ResultsDespite the medical treatment and supportive care available, there remains a gap in services addressing complex existential and psychosocial needs that were markedly valued by patients. Patient experience was characterised by a pervasive loss of all that encompassed their former sense of self and a focus on immediate needs.ConclusionsPatients in this study had substantial needs, which were often not shared and not addressed by the current medical system of care. An improved multidisciplinary care model is indicated, which proactively (1) engages care coordination and advocacy; (2) minimises patients’ sense of waiting and uncertainty through mapping out a plan, including involvement of palliative care in a timely fashion; and (3) actively invites discussion around goals and preferences for care to promote patients’ sense of self.

The challenges and suffering of caring for people with primary malignant glioma: qualitative perspectives on improving current supportive and palliative care practices

Objectives Carers of patients with high-grade primary malignant glioma (PMG) are known to face extraordinary challenges, as they care for patients with multiple profound and often devastating physical, cognitive and behavioural changes. This study aimed to understand the supportive and palliative care needs in this setting, with a particular focus upon care at the end-of-life, which has hitherto been neglected. Methods This prospective qualitative study undertook in-depth interviews with 23 current and bereaved carers of adults with PMG. Carers were recruited from outpatient and inpatient services of two Australian metropolitan hospitals, including neurosurgery, oncology and palliative care. Thematic analysis was conducted by three independent researchers, using methods informed by grounded theory. Results Carers described significant needs in relation to three distinct domains: the challenge of caring; the lack of support available to carers and the suffering of caring. The need for care coordination was highlighted as it may enable a series of recommendations for improved care, including: navigation between health providers, individualised, staged information; routine, proactive telephone needs-assessment and emotional support; and early routine integration of palliative care services. Conclusions The results of this study shed new light on providing timely information and palliative care to support carers. We call for health services to reconsider the current medical model for this patient group, where patients are the centre of care, information and support, towards a more collaborative model which places carers and patients into a partnership.

“It Doesn't End on the Last Day of Treatment”: A Psychoeducational Intervention for Women After Adjuvant Treatment for Early Stage Breast Cancer

Abstract Living through early stage breast cancer is not simply about overcoming a short-term crisis. The lived experience of women at the completion of adjuvant treatment calls for a reconsideration of the timing and type of psychosocial interventions provided. A Post Adjuvant Treatment Support Program (PATS) was developed and piloted over a nine-month period with pleasing results. The program aims to mark the end of treatment and promotes active coping through sharing common experiences, normalizing responses to completion of treatment, encouraging consideration of the meaning of the experience, and facilitating the use of stress management and cognitively based coping skills. Innovative methods to encourage focused group discussion are being developed. The intervention addresses the specific and previously unmet needs of women at the end-of-treatment phase of early stage breast cancer.

Health care professionals' perspectives of living and dying with primary malignant glioma: Implications for a unique cancer trajectory

OBJECTIVES Health care professionals (HCPs) caring for people with primary malignant glioma (PMG) and their carers see many of the profound challenges facing this group, yet their perspectives are not documented. This study aimed to understand and document the unique perspective of HCPs in relation to the supportive and palliative care needs of patients with PMG and their carers, with a view to developing a model of care. METHODS Qualitative study involving semi-structured focus groups and interviews with 35 medical, nursing and allied health staff actively engaged in providing care for this patient group. Purposive and theoretical sampling from two major metropolitan hospitals and one community palliative care service in Australia was utilised to seek perspectives from a variety of disciplines and health care settings. Thematic analysis was conducted by three independent researchers, using a constant comparative method influenced by grounded theory. RESULTS Key themes relating to the needs of people with PMG which were apparent from the HCPs included: The difference in the illness course of glioma compared to other cancers; Limitations of current medical care; Challenges in balancing hope with reality of the illness; and Recommendations to improve care, including recognising the role of family and moving from a model where services are offered in response to demonstrated needs. Significance of the results: Current models of care based upon the classic cancer trajectory are unresponsive to the needs of people with PMG. Care may be enhanced by moving towards a proactive approach, extending the goals of care beyond medical needs and broadening the focus of care to include family needs.

Is It Helpful to Give Older People with Cancer the Same Chance at Rehabilitation as Older General Medical Patients

Although the complexity of age combined with a cancer diagnosis can result in unmet supportive care needs there are seldom resources to assess or address such needs for older people with cancer (OPWC). The purpose of this project was to trial a service to improve the care for OPWC through (1) an expanded supportive care screening process and (2) capacity building of subacute ambulatory care services (SACS) staff to increase referrals to community-based rehabilitation. Methods/design: Collaboration between allied health (AH) staff at an inner city general hospital with a large cancer service, a cancer specialist hospital, and a SACS service in Melbourne, Australia, developed an AH geriatric screening assessment (GSA) tool. Parallel to this process training was provided to SACS staff in relation to working with OPWC. Although close to one half (44%) of SACS staff who participated in this program (n = 22) had over 6 years’ experience, 32% had not worked with OPWC. Prior to training, 81% did not feel confident in their knowledge about working with this cohort. After their training 72% were more confident about normal aging and implications for care of OPWC. Of the 491 patients screened, 80% were older than age 65, however, only 25 resided in the SACS catchment area. More than one third of these did not have clear rehabilitation needs, and the remainder were not referred due to ongoing medical issues. Less than one half of the patients in the catchment area were discussed in a Multi-disciplinary Meeting (MDM) but all were referred to allied health and assessed using the GSA. Although this project did not result in referrals of OPWC to SACS the training program for SACS staff was a success and allied health assessments were improved to include GSA factors. The complexity of care for OPWC was further highlighted through interviews with staff involved with the study.