RESUMEN
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.
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Lista de Verificación , Cuidados Paliativos , Humanos , Psicometría/métodos , Reproducibilidad de los Resultados , Espiritualidad , Encuestas y Cuestionarios , Calidad de VidaRESUMEN
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.
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Medicina Paliativa , Terapias Espirituales , Australia , Humanos , Calidad de Vida , Espiritualidad , Encuestas y CuestionariosRESUMEN
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.
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Neoplasias/terapia , Cuidados Paliativos/métodos , Medicina Paliativa/tendencias , Terapia por Relajación/tendencias , HumanosRESUMEN
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.
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Instituciones de Atención Ambulatoria , Diseño Interior y Mobiliario , Adulto , Anciano , Anciano de 80 o más Años , Actitud del Personal de Salud , Australia , Instituciones Oncológicas , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Satisfacción del Paciente , Pacientes , Plantas , Encuestas y CuestionariosRESUMEN
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.
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Antropología Cultural/métodos , Cuidadores/psicología , Musicoterapia/métodos , Neoplasias/terapia , Adolescente , Adulto , Niño , Humanos , Oncología Médica , Música/psicología , Neoplasias/psicología , Padres/psicología , Percepción , Investigación Cualitativa , Autocuidado , Estrés Psicológico/prevención & control , Adulto JovenRESUMEN
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.
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Musicoterapia , Música/psicología , Neoplasias/psicología , Adaptación Psicológica , Femenino , Cuidados Paliativos al Final de la Vida , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/diagnóstico , Neoplasias/rehabilitación , Autocuidado , Encuestas y CuestionariosRESUMEN
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.
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Cuidadores/psicología , Pesar , Musicoterapia , Neoplasias/psicología , Apego a Objetos , Adulto , Anciano , Empatía , Femenino , Humanos , Relaciones Interpersonales , Masculino , Persona de Mediana Edad , Narración , Investigación Cualitativa , VictoriaRESUMEN
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.