Unmet spiritual needs in palliative care: psychometrics of a screening checklist.

BACKGROUND: While studies in palliative care use measures of spirituality and religious belief, there have been few validation studies of a screening tool that identifies unmet spiritual needs. METHODS: A multidisciplinary research team developed and examined the usefulness, reliability and validity of a 17-item Spiritual Concerns Checklist (SCC) as a screening tool for unmet spiritual needs. A cohort of patients recruited from three palliative care services in Sydney and Melbourne, Australia completed anonymous questionnaires. Factor structure and item response theory were used to examine its properties; concurrent validity employed the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp-12). RESULTS: Among 261 patients, while only 15% directly sought spiritual care, nearly 62% identified at least one spiritual concern. Existential needs (fear of the dying process 32%; loss of control 31%), regret (20%), need for forgiveness (17%), guilt (13%), loss of hope (13%) and meaning (15%) were prominent concerns. Eleven concerns were present for more than 10% of the participants and 25% of religiously orientated participants expressed >4 concerns. The 17-item SCC was unidimensional, with satisfactory reliability. Concurrent validity was evident in the reduced sense of meaning and peace on the FACIT-Sp-12. CONCLUSION: This preliminary Rasch analysis of the newly developed SCC has demonstrated its usefulness, reliability and validity. Our findings encourage refinement and ongoing development of the SCC with further investigation of its psychometric properties in varying populations.

Spirituality and religiosity in a palliative medicine population: mixed-methods study.

BACKGROUND: Spiritual care allows palliative care patients to gain a sense of purpose, meaning and connectedness to the sacred or important while experiencing a serious illness. This study examined how Australian patients conceptualise their spirituality/religiosity, the associations between diagnosis and spiritual/religious activities, and views on the amount of spiritual support received. METHODS: This mixed-methods study used anonymous semistructured questionnaires, which included the Functional Assessment of Chronic Illness Therapy-Spiritual Scale-12 (FACIT-SP-12) and adapted and developed questions examining religion/spirituality's role and support. RESULTS: Participants numbered 261, with a 50.9% response rate. Sixty-two per cent were affiliated with Christianity and 24.2% with no religion. The mean total FACIT-SP-12 score was 31.9 (SD 8.6). Patients with Christian affiliation reported a higher total FACIT-SP-12 score compared with no religious affiliation (p=0.003). Those with Christian and Buddhist affiliations had higher faith subscale scores compared with those with no religious affiliation (p<0.001). Spirituality was very important to 39.9% and religiosity to 31.7% of patients, and unimportant to 30.6% and 39.5%, respectively. Following diagnosis, patients prayed (p<0.001) and meditated (p<0.001) more, seeking more time, strength and acceptance. Attendance at religious services decreased with frailty (p<0.001), while engagement in other religious activities increased (p=0.017). Patients who received some level of spiritual/religious support from external religious/faith communities and moderate to complete spiritual/religious needs met by the hospitals reported greater total FACIT-SP-12 spirituality scores (p<0.001). CONCLUSION: Respectful inquiry into patients spiritual/religious needs in hospitals allows for an attuned approach to addressing such care needs while considerately accommodating those disinterested in such support.

Nature-based supportive care opportunities: a conceptual framework.

OBJECTIVE: Given preliminary evidence for positive health outcomes related to contact with nature for cancer populations, research is warranted to ascertain possible strategies for incorporating nature-based care opportunities into oncology contexts as additional strategies for addressing multidimensional aspects of cancer patients' health and recovery needs. The objective of this study was to consolidate existing research related to nature-based supportive care opportunities and generate a conceptual framework for discerning relevant applications in the supportive care setting. METHODS: Drawing on research investigating nature-based engagement in oncology contexts, a two-step analytic process was used to construct a conceptual framework for guiding nature-based supportive care design and future research. Concept analysis methodology generated new representations of understanding by extracting and synthesising salient concepts. Newly formulated concepts were transposed to findings from related research about patient-reported and healthcare expert-developed recommendations for nature-based supportive care in oncology. RESULTS: Five theoretical concepts (themes) were formulated describing patients' reasons for engaging with nature and the underlying needs these interactions address. These included: connecting with what is genuinely valued, distancing from the cancer experience, meaning-making and reframing the cancer experience, finding comfort and safety, and vital nurturance. Eight shared patient and expert recommendations were compiled, which address the identified needs through nature-based initiatives. Eleven additional patient-reported recommendations attend to beneficial and adverse experiential qualities of patients' nature-based engagement and complete the framework. CONCLUSIONS: The framework outlines salient findings about helpful nature-based supportive care opportunities for ready access by healthcare practitioners, designers, researchers and patients themselves.

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.

Nature-based care opportunities and barriers in oncology contexts: a modified international e-Delphi survey.

OBJECTIVE: To develop recommendations regarding opportunities and barriers for nature-based care in oncology contexts using a structured knowledge generation process involving relevant healthcare and design experts. DESIGN: Four-round modified electronic Delphi study. Oncology patients' nature-based recommendations, uncovered in preceding qualitative investigation, were included in the first round for the expert participants' consideration. Key items (opportunities and barriers) were developed using data aggregation and synthesis, followed by item prioritisation and 10-point Likert scale ranking (1=not important, 10=very important). Descriptive statistics were calculated to assess items of highest importance representing expert recommendations. CONTEXT: Online Delphi process constituting an electronic international survey. PARTICIPANTS: A purposive sample of 200 potential panellists (recruitment target n=40) comprising healthcare practitioners, managers, designers, architects and researchers were invited to participate; experts were identified via research networks, snowballing and systematic literature review. RESULTS: 38 experts across seven countries (Australia, USA, UK, New Zealand, Canada, Denmark and Sweden) returned questionnaire 1, which determined consent and acceptance for participation. Initial response rate was 19%, and subsequent response rates were 84%, 82% and 84% for rounds 2, 3 and 4, respectively. The Delphi panel developed recommendations consisting of 10 opportunities and 10 barriers. The following opportunities were rated to be of highest importance: window views from clinical areas onto nature; outdoor settings, gardens and courtyards with easy and effortless access; and nature-based physical exercise adapted to patient requirements. Highest-rated barriers for nature-based oncology care included lack of knowledge and awareness about benefits of nature engagement and inaccessibility, not considering access requirements for the very sick and frail. CONCLUSIONS: Experts suggested and agreed on a set of recommendations, which represent critical considerations for the safe adoption of nature-based oncology opportunities. These findings fill a gap in understanding about helpful nature-based oncology care and may translate into oncology design and innovation.

Identifying opportunities for nature engagement in cancer care practice and design: protocol for four-round modified electronic Delphi.

INTRODUCTION: Opportunities to engage with nature have shown relevance in experiences of health and recovery of patients with cancer and are attracting interest in cancer care practice and design. Such healthcare innovations can widen the horizon of possible supportive care solutions but require deliberate and rigorous investigation to ensure responsible action is taken and wastage avoided. This protocol outlines a study designed to solicit knowledge from relevant experts drawn from a range of healthcare practitioners, management representatives, designers and researchers to explore levels of opinion consensus for determining opportunities for, and barriers to, providing helpful nature engagement in cancer care settings. METHODS AND ANALYSIS: A 4-round modified electronic Delphi methodology will be used to conduct a structured, iterative feedback process for querying and synthesising expert opinion. Round 1 administers an open-ended questionnaire to a panel of selected, relevant experts who will consider the own recommendations of patients with cancer for nature engagement (drawn from a preceding investigation) before contributing salient issues (items) with relevance to the topic. Round 2 circulates anonymised summaries of responses back to the experts who verify and, if they wish, reconsider their own responses. Rounds 3 and 4 determine and rank experts' top 10 items using a 10-point Likert-type scale. Descriptive statistics (median and mean scores) will be calculated to indicate the items' relative importance. Levels of consensus will be explored with consensus defined as 75% agreement. ETHICS AND DISSEMINATION: Ethics approval for this study was obtained from the Institution's Human Research Ethics Committee (blinded for review). It is anticipated that the results will be published in peer-reviewed journals and presented in a variety of forums.

"Artificial But Better Than Nothing".

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' experiences with nature: Normalizing dichotomous realities.

AIMS: To explore cancer patients' subjective experiences with nature in order to examine the relevance of nature-based care opportunities in cancer care contexts. The rationale was to describe the underlying mechanisms of this interaction and produce translatable knowledge. METHODS: Qualitative research design informed by grounded theory. Sampling was initially convenience and then theoretical. Competent adults with any cancer diagnosis were eligible to participate in a semi-structured interview exploring views about the role of nature in their lives. Audio-recorded and transcribed interviews were analyzed using inductive, cyclic, and constant comparative analysis. RESULTS: Twenty cancer patients (9 female) reported detailed description about their experiences with nature from which a typology of five common nature interactions emerged. A theory model was generated constituting a core category and two inter-related themes explaining a normalization process in which patients negotiate their shifting realities (Core Category). Nature functioned as a support structure and nurtured patients' inner and outer capacities to respond and connect more effectively (Theme A). Once enabled and comforted, patients could engage survival and reconstructive maneuvers and explore the consequences of cancer (Theme B). A dynamic relationship was evident between moving away while, simultaneously, advancing towards the cancer reality in order to accept a shifting normality. From a place of comfort and safety, patients felt supported to deal differently and more creatively with the threat and demands of cancer diagnosis, treatment and outlook. CONCLUSIONS: New understanding about nature's role in cancer patients' lives calls attention to recognizing additional forms of psychosocial care that encourage patients' own coping and creative processes to deal with their strain and, in some cases, reconstruct everyday lives. Further research is required to determine how nature opportunities can be feasibly delivered in the cancer care setting.

Music's Relevance for People Affected by Cancer: A Meta-Ethnography and Implications for Music Therapists.

BACKGROUND: Evidence supports music-based oncologic support interventions including music therapy. By comparison, little is understood about music-based self-care. This meta-ethnography examined five published qualitative studies to extend understanding of music's relevance, including helpfulness, for people affected by cancer; including children, adolescents, and adults with cancer, carers, and the bereaved. OBJECTIVE: To improve understanding of music's broad relevance for those affected by cancer. METHODS: Meta-ethnography strategies informed the analysis. Five studies were synthesized that included 138 participants: 26 children and 28 parents of children with cancer; 12 adolescents and young adults with cancer; 52 adults with cancer; 12 carers; and 8 bereaved. Studies' category and thematic findings were compared and integrated into third-order interpretations, and a line of argument. Perspectives from the five studies that illuminated the line of argument were developed. RESULTS: Music usage can remain incidental, continue normally, and/or change because of cancer's harsh effects. Music can be a lifeline, support biopsychosocial and spiritual well-being, or become elusive, that is, difficult to experience. Music helps or intrudes because it extends self-awareness and social connections, and prompts play, memories, imageries, and legacies. Music therapists may help patients and carers to recover or extend music's helpful effects. CONCLUSIONS: Cancer care can be improved through offering music-based resources/services, which give cancer patients and carers opportunities to extend music usage for personal support and, for carers, to support patients. Music therapists can advocate for such resources and educate health professionals about assessing/recognizing when patients' and carers' changed music behaviors signify additional support needs.

"A quiet still voice that just touches": music's relevance for adults living with life-threatening cancer diagnoses.

PURPOSE: Music has historically aided health and loss-adaptation, however, cancer patients' experience of music for self-care is not well understood. This study examines adult cancer patients' views about music's role before and after diagnosis. METHODS: Constructivist approach, with grounded theory informed design using convenience, snowball and theoretical sampling. Patients from Australian metropolitan cancer and hospice settings completed demographic questionnaires and participated in semi-structured interviews. Qualitative inter-rater reliability was applied. RESULTS: Fifty-two patients reported comparable time spent experiencing music pre-post diagnosis. Music may remain incidental; however, many patients adapt music usage to ameliorate cancer's aversive effects. Patients often draw from their musical lives and explore unfamiliar music to: remain connected with pre-illness identities; strengthen capacity for enduring treatment, ongoing survival (even when knowing "you're going to die"), or facing death; reframe upended worlds; and live enriched lives. Patients can ascribe human or physical properties to music when describing its transformative effects. Familiar lyrics maybe reinterpreted, and patients' intensified emotional reactions to music can reflect their threatened mortality. Sometimes music becomes inaccessible, elusive, and/or intensifies distress and is avoided. Families', friends' and professionals' recognition of patients' altered musical lives and music-based suggestions can extend patients' use of music for self-care. CONCLUSION: Health professionals can support patients by inquiring about their music behaviours and recognising that altered music usage may signify vulnerability. Although commonly recommended, hospital concerts and music broadcasts need sensitive delivery. Patients' preferred music should be available in diagnostic, treatment and palliative settings because it can promote endurance and life enrichment.

Sound continuing bonds with the deceased: the relevance of music, including preloss music therapy, for eight bereaved caregivers.

This study examines music's relevance, including preloss music therapy, for 8 informal caregivers of people who died from cancer. The design was informed by constructivist grounded theory and included semistructured interviews. Bereaved caregivers were supported or occasionally challenged as their musical lives enabled a connection with the deceased. Music was often still used to improve mood and sometimes used to confront grief. Specific music, however, was sometimes avoided to minimize sadness. Continuing bonds theory's focus on connecting with the deceased through memory and imagery engagement may expand to encompass musical memories, reworking the meaning of familiar music, and discovering new music related to the deceased. Preloss music involvement, including music therapy, between dying patients and families can help in bereavement.

Oncology staff reflections about a 52-year-old staff Christmas choir: constructivist research.

OBJECTIVE: Peter MacCallum Cancer Centre has one of the world's most enduring staff Christmas choirs. Commencing in 1956, the choir performs in a cafeteria, patient wards, and outpatient waiting areas before each Christmas. With recent emphasis on oncology staff support needs the choir's relevance warranted investigation. This constructivist research examined what effect the staff Christmas choir had on the choir members and staff bystanders in 2008. METHODS: Sampling was convenience and purposive. Staff choir members were invited to participate during rehearsals, and staff bystanders were invited at seven choir performances in the hospital. Respondents completed anonymous and semistructured questionnaires and the conductor (of 29 years) was interviewed. The inductive, comparative, and cyclic data analyses were informed by grounded theory and qualitative interrater reliability was performed. RESULTS: Questionnaires from 64 staff were returned. The choir elicited positive emotions, memories, Christmas spirit, hospital community and/or work-life effects for many staff, in a cancer context described as sometimes "overwhelming" and "stressful." Choir members' reactions included stress relief, friendship and feeling rewarded. Bystanders' reactions included feeling uplifted, inspired and moved. Suggestions for future performances were offered, including musical acknowledgement of other religious festivals. Two respondents were concerned about intrusive effects on patients and work practices. DISCUSSION: A staff Christmas choir supported most choir member and staff bystander respondents in an oncology hospital and is recommended in comparable contexts. Further investigation is warranted to extend understanding about Christmas music's effects in palliative care settings.

"The moment is all we have": patients and visitors reflect on a staff Christmas choir.

OBJECTIVE: To examine how performances by the Staff Christmas Choir of the Peter MacCallum Cancer Centre ("Peter Mac") affected inpatients, outpatients and visitors in 2008. DESIGN, SETTING AND PARTICIPANTS: During the Christmas season 2008, the Peter Mac Staff Christmas Choir gave seven performances at the Centre. Locations included inpatient wards, outpatient waiting areas and a cafeteria. To assess their response to the choir, oncology inpatients, outpatients and visitors (including early-departing bystanders) were given anonymous, semi-structured questionnaires during and after performances. To analyse the responses, we used a constructivist research approach informed by grounded theory. MAIN OUTCOME MEASURES: Participants' descriptions of the choir's effects on them. RESULTS: Questionnaires were returned by 111 people. The performances were received favourably by 93.7% of respondents, including nine from Jewish, Hindu or atheist backgrounds. Many said the music aroused positive emotions and memories. Several described transformative thoughts and physical reactions, felt affirmed by the Christmas spirit or message, and/or appreciated the peaceful or enlivened and social atmosphere. The choir also elicited personal perspectives about Christmas and Judaism, and the importance of "enjoying the moment". Only three respondents (2.7%) reported adverse effects, relating to emotional and audible intrusiveness. CONCLUSIONS: The Staff Christmas Choir created a supportive and uplifting atmosphere for many oncology patients and their visitors. However, responses from people from non-Christian backgrounds were limited, and further investigation is warranted to extend our understanding of the effect of Christmas music in Australian public health settings.