Clare O’Callaghan

Pain, music creativity and music therapy in palliative care

An analysis of the music therapy literature yields numerous reports to support the role of music in the alleviation of pain in palliative care. Four theoretical perspectives that support why many patients report reduced pain sensation after music therapy include: the psychological relationship between music and pain; the psychophysiological theory; spinal mechanisms involved in pain modulation; and the role of endorphins. Considerations significant to the use of music in pain relief include how music, used in appropriately, can aggravate pain sensation. Case studies, which include the use of creative music therapy techniques, point to the efficacy of music therapy in alleviating the pain experiences of both palliative care patients and their significant others.

Understanding how cancer patients actualise, relinquish, and reject advance care planning: implications for practice

PurposeAlthough advance care planning (ACP) is recognised as integral to quality cancer care, it remains poorly integrated in many settings. Given cancer patients’ unpredictable disease trajectories and equivocal treatment options, a disease-specific ACP model may be necessary. This study examines how Australian cancer patients consider ACP. Responses will inform the development of an Australian Cancer Centre’s ACP programme.MethodsA constructivist research approach with grounded theory design was applied. Eighteen adults from lung and gastro-intestinal tumour streams participated. Participants first described their initial understanding of ACP, received ACP information, and finally completed a semi-structured interview assisted by the vignette technique. Qualitative inter-rater reliability was integrated.ResultsParticipants initially had scant knowledge of ACP. On obtaining further information, their responses indicated that: For cancer patients, ACP is an individualised, dynamic, and shared process characterised by myriad variations in choices to actualise, relinquish, and/or reject its individual components (medical enduring power of attorney, statement of choices, refusal of treatment certificate, and advanced directive). Actualisation of each component involves considering, possibly conversing about, planning, and communicating a decision, usually iteratively. Reactions can change over time and are informed by values, memories, personalities, health perceptions, appreciation of prognoses, and trust or doubts in their substitute decision makers.ConclusionFindings endorse the value of routinely, though sensitively, discussing ACP with cancer patients at various time points across their disease trajectory. Nonetheless, ACP may also be relinquished or rejected and ongoing offers for ACP in some patients may be offensive to their value system.

Resounding attachment: cancer inpatients’ song lyrics for their children in music therapy

Goals of workScant attention focuses on supporting parent–child communication during the parents’ cancer hospitalizations. Parents may struggle to remain emotionally available. Caregiver absences may threaten secure attachment relationships with infants and elicit problems amongst older children. Music therapists help many parents with cancer to compose songs for their children. Their lyric analysis may provide insight into song writing’s communicative and therapeutic potential.Materials and methodsTwo song lyric groups were comparatively analyzed (based on grounded theory). One group included 19 songs written by 12 patients with the first author. Another included 16 songs written by 15 patients with three music therapists (including two authors), which were previously published or recorded for the public. Songs were composed by 20 mothers and seven fathers for at least 46 offspring. All parents had hematological or metastatic diseases. Qualitative inter-rater reliability was integrated.Main resultsComparable lyrical ideas in the two parent song groups included: love; memories; yearning for children; metaphysical presence (now and afterlife); loss and grief; the meaning and helpfulness of the children in their lives; hopes for and compliments about their children; encouragement; requests; personal reflections; existential beliefs; and suggestions about to whom the children can turn.ConclusionsParents’ song lyric messages may support their children during the parents’ illnesses and through the children’s developmental transitions and possible bereavement. Some parents use song writing for catharsis and to encourage their children’s continuing attachment with them after death. Through promoting parent–child connectedness and emotional expression, therapeutic song writing can be a valuable oncologic supportive care modality.

A mixed method feasibility study of a patient- and family-centred advance care planning intervention for cancer patients

BackgroundAdvance care planning (ACP) is a process whereby values and goals are sensitively explored and documented to uphold patients’ wishes should they become incompetent to make decisions in the future. Evidenced-based, effective approaches are needed. This study sought to assess the feasibility and acceptability of an ACP intervention informed by phase 1 findings and assessed the suitability of measures for a phase 3 trial.MethodsProspective, longitudinal, mixed methods study with convenience sampling. A skilled facilitator conducted an ACP intervention with stage III/IV cancer patients and invited caregivers. It incorporated the vignette technique and optional completion/integration of ACP documents into electronic medical records (EMR). Quantitative and qualitative data were collected concurrently, analysed separately, and the two sets of findings converged.ResultsForty-seven percent consent rate with 30 patients and 26 caregivers completing the intervention. Ninety percent of patient participants had not or probably not written future care plans. Compliance with assessments was high and missing responses to items low. Small- to medium-sized changes were observed on a number of patients and caregiver completed measures, but confidence intervals were typically wide and most included zero. An increase in distress was reported; however, all believed the intervention should be made available. Eleven documents from nine patients were incorporated into EMR. ACP may not be furthered because of intervention inadequacies, busy lives, and reluctance to plan ahead.ConclusionsIn this phase 2 study we demonstrated feasibility of recruitment and acceptability of the ACP intervention and most outcome measures. However, patient/family preferences about when and whether to document ACP components need to be respected. Thus flexibility to accommodate variability in intervention delivery, tailored to individual patient/family preferences, may be required for phase 3 research.

Patient perceptions of treatment-free remission in chronic myeloid leukemia.

Abstract Around half of patients with chronic myeloid leukemia (CML) who achieve a stable deep molecular response would remain in treatment-free remission (TFR) if their tyrosine kinase inhibitors (TKIs) were stopped. TFR is increasingly becoming a goal of treatment. Eighty-seven patients answered a survey exploring patient perceptions of TFR, incorporating CML-specific factors (disease history, treatment toxicity, and adherence) and questions concerning health beliefs. 81% of participants (95% CI: 72%–89%) indicated that they would be willing to attempt TFR. No demographic or CML-related variable in the survey was significantly associated with willingness. In qualitative analysis, the commonest motivations for TFR included TKI toxicity (n = 26) and convenience (n = 18). The leading reason for reluctance was fear of consequences of stopping TKI (n = 16). Reluctance was often associated with needs for additional information or incomplete understanding of the current data. Understanding patient motivations and concerns is important if TFR is to become a part of CML management.

“I might not have cancer if you didn’t mention it”: a qualitative study on information needed by culturally diverse cancer survivors

BackgroundImmigrants from culturally and linguistically diverse (CALD) backgrounds diagnosed with cancer face multiple challenges with health systems foreign to them. There is scarce understanding about their needs following cancer treatment in the survivorship phase. Unmet needs were examined in immigrant Chinese and Greek cancer survivors in order to assist development of relevant and useful information resources for these CALD groups.MethodsQualitative descriptive design was used. Adult cancer survivors, whose native language was Mandarin, Cantonese or Greek, were recruited through ethnic cancer support groups and cancer specialists in two Australian cities. Six focus groups were conducted, two in each native language group. Recorded responses were transcribed, translated into English, and thematically analysed.ResultsThirty-nine CALD cancer survivors participated from Greek (11), Cantonese (14) and Mandarin (14) backgrounds. Thematic findings included as follows: ongoing cancer-related stressors, cancer misunderstandings, coping strategies, ‘survivor’ seldom reflects self-appraisal, and additional CALD survivorship information needed. Immigrant cancer survivors may prefer ‘recovery’ to ‘survivorship’ descriptors and need information similar to Caucasian cancer survivors alongside as follows: resources for navigating health care, financial and community entitlements; caregiver-directed information to enhance their support; explanations about differences in health care approaches between survivors’ original and adopted countries; and acknowledgment of survivorship diversity within CALD groups.ConclusionsImmigrant cancer survivors’ additional requirements to native survivors likely reflect challenges in dealing with foreign environments and varied levels of acculturation within group members. Identification of immigrant cancer survivorship issues may support development of targeted resources for promoting survivors’ self-care and capacity for finding, choosing, and using existing support options.

Introducing a model incorporating early integration of specialist palliative care: A qualitative research study of staff’s perspectives:

Background: Palliative care has evolved to encompass early integration, with evaluation of patient and organisational outcomes. However, little is known of staff’s experiences and adaptations when change occurs within palliative care services. Aim: To explore staff experiences of a transition from a service predominantly focused on end-of-life care to a specialist service encompassing early integration. Design: Qualitative research incorporating interviews, focus groups and anonymous semi-structured questionnaires. Data were analysed using a comparative approach. Service activity data were also aggregated. Setting/participants: A total of 32 medical, nursing, allied health and administrative staff serving a 22-bed palliative care unit and community palliative service, within a large health service. Results: Patients cared for within the new model were significantly more likely to be discharged home (7.9% increase, p = 0.003) and less likely to die in the inpatient unit (10.4% decrease, p < 0.001). While early symptom management was considered valuable, nurses particularly found additional skill expectations challenging, and perceived patients’ acute care needs as detracting from emotional and end-of-life care demands. Staff views varied on whether they regarded the new model’s faster-paced work-life as consistent with fundamental palliative care principles. Less certainty about care goals, needing to prioritise care tasks, reduced shared support rituals and other losses could intensify stress, leading staff to develop personalised coping strategies. Conclusion: Services introducing and researching innovative models of palliative care need to ensure adequate preparation, maintenance of holistic care principles in faster work-paced contexts and assist staff dealing with demands associated with caring for patients at different stages of illness trajectories.

Managing ‘shades of grey’: a focus group study exploring community-dwellers’ views on advance care planning in older people

BackgroundCommunity-dwelling consumers of healthcare are increasing, many aging with life-limiting conditions and deteriorating cognition. However, few have had advance care planning discussions or completed documentation to ensure future care preferences are acted upon. This study examines the awareness, attitudes, and experiences of advance care planning amongst older people and unrelated offspring/caregivers of older people residing in the community.MethodsQualitative descriptive research, which included focus groups with older people (55+ years) and older people’s offspring/caregivers living in an Australian city and surrounding rural region. Data was analysed using an inductive and comparative approach. Sampling was both convenience and purposive. Participants responded to web-based, newsletter or email invitations from an agency, which aims to support healthcare consumers, a dementia support group, or community health centres in areas with high proportions of culturally and linguistically diverse community-dwellers.ResultsEight focus groups were attended by a homogenous sample of 15 older people and 27 offspring/caregivers, with 43% born overseas. The overarching theme, ‘shades of grey’: struggles in transition, reflects challenges faced by older people and their offspring/caregivers as older people often erratically transition from independence and capacity to dependence and/or incapacity. Offspring/caregivers regularly struggled with older people’s fluctuating autonomy and dependency as older people endeavoured to remain at home, and with conceptualising “best times” to actualise advance care planning with substitute decision maker involvement. Advance care planning was supported and welcomed, x advance care planning literacy was evident. Difficulties planning for hypothetical health events and socio-cultural attitudes thwarting death-related discussions were emphasised. Occasional offspring/caregivers with previous substitute decision maker experience reported distress related to their decisions.ConclusionsAdvance care planning programs traditionally assume participants are ‘planning ready’ to legally appoint a substitute decision maker (power of attorney) and record end-of-life treatment preferences in short time frames. This contrasts with how community dwelling older people and offspring/caregivers conceive future care decisions over time. Advance care planning programs need to include provision of information, which supports older people’s advance care planning understanding and management, and also supports offspring/caregivers’ development of strategies for broaching advance care planning with older people, and preparing for potential substitute decision maker roles. Development and integration of strategies to support older people’s decision-making when in the ‘grey zone’, with fluctuating cognitive capacities, needs further consideration. Findings support an advance care planning model with conversations occurring at key points across a person’s lifespan.

“Artificial But Better Than Nothing”: The Greening of an Oncology Clinic Waiting Room

Objective: To investigate patient, staff, and carer responses to an environmental intervention in an oncology clinic waiting room and evaluate the acceptability of artificial plant materials. Design Postintervention: Cross-sectional survey study. Setting: Oncology outpatient clinic waiting room located in a metropolitan comprehensive cancer center in Australia. Main Outcome Measure: Observer ratings of perceived qualities and effects of lifelike (fake) plants while spending time in the waiting room. Participants: Convenience sample (N = 143) consisted of 73 cancer patients, 13 staff, 52 carers, and 5 “others” aged between 24 and 89 years (M = 56, SD = 14.5). Intervention: Artificial plant arrangements, hanging installations, two movable green walls, and one rock garden on wheels placed throughout the outpatients’ clinic waiting room. Results: Eighty-one percent (115/142) of respondents noticed the green features when first entering the waiting room and 67% (90/134) noticed they were artificial. Eighty-one percent (115/142) indicated “like/like a lot” when reporting their first reaction to the green features. Forty-eight percent (68/143) were positively affected and 23% (33/143) were very positively affected. Eighty-one percent (110/135) agreed/strongly agreed that “The greenery brightens the waiting room,” 62% (80/130) agreed/strongly agreed that they “prefer living plants,” and 76% (101/133) agreed/strongly agreed that “‘lifelike’ plants are better than no plants.” Comments included mostly positive appraisals and occasional adverse reactions to artificial plants. No significant differences were found between patients’, staff, and carers’ reactions. Conclusions: The environmental intervention positively impacted patients’, staff, and carers’ perceptions of the oncology waiting room environment. Patients, staff, and carers mostly accepted artificial plants as an alternative design solution to real plants.

Cancer Patients’ Recommendations for Nature-Based Design and Engagement in Oncology Contexts: Qualitative Research:

Objectives: To explore cancer patients’ recommendations for nature engagement based on their subjective nature experiences and observations in the cancer setting. The rationale was to gain practical insight for delineating relevant and translatable nature-based care and design opportunities in oncology contexts. Background: Innovative cancer care services are needed to respond to growing demand and shifting healthcare needs. Engagement with nature has shown multiple health benefits and presents a promising opportunity for application in healthcare to improve outcomes. Method: Qualitative research design using content analysis was used. Eligible adults with any cancer diagnosis participated in semistructured and audio-recorded interviews. Transcribed textual data included responses to two open-ended questions querying about participants’ recommendations related to nature-based opportunities in the cancer setting. Deductive analysis used three predetermined categories: “recommendation: features,” “recommendation: functions,” and “cautions.” Results: Twenty patients with cancer (nine female) participated. Broad recommendations incorporated (1) using nature for vital sensory stimulation and engagement, (2) using nature for personal space and freedom to enable private and social exploration, (3) using views to nature for distraction and comfort, and (4) accessing nature for physical activity and movement. Three critical factors were determined for avoiding adverse experiences: determining appropriate expenditure and resourcing, selection of appropriate nature-based design materials, and exercising caution around demanding nature engagement and harsh weather conditions. Conclusions: Cancer patients’ recommendations reveal the importance of engaging with nature in their experiences of health and recovery. The findings can inform planning appropriate and safe integration of beneficial nature engagement in cancer settings and support services.