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Individualised and complex experiences of integrative cancer support care: Combining qualitative and quantitative data

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The widespread use of complementary therapies alongside biomedical treatment by people with cancer is not supported by evidence from clinical trials. We aimed to use combined qualitative and quantitative data to describe and measure individualised experiences and outcomes. In three integrative cancer support centres (two breast cancer only) in the UK, consecutive patients completed the individualised outcome questionnaire Measure Yourself Concerns and Wellbeing (MYCaW) before and after treatment. MYCaW collects quantitative data (seven-point scales) and written qualitative data and the qualitative data were analysed using published categories. Seven hundred eighty-two participants, 92% female, mean age 51 years, nominated a wide range of concerns. Psychological and emotional concerns predominated. At follow-up, the mean change (improvement) in scores (n = 588) were: concern 1, 2.06 (95% CI 1.92-2.20); concern 2, 1.74 (95% CI 1.60-1.90); and well-being, 0.64 (95% CI 0.52-0.75). The most common responses to 'what has been the most important aspect for you?' were 'receiving complementary therapies on an individual or group basis' (26.2%); 'support and understanding received from therapists' (17.1%) and 'time spent with other patients at the centres' (16.1%). Positive (61.5%) and negative (38.5%) descriptions of 'other things affecting your health' correlated with larger and smaller improvement in concerns and well-being, respectively. In a multicentre evaluation, the MYCaW questionnaire provides rich data about patient experience, changes over time and perceptions of what was important to each individual with cancer within that experience. It is unlikely that meaningful evaluations of this complex intervention could be carried out by quantitative methods alone.
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... All articles were published after 2001, where eight articles were published after 2010. One study chose an RCT design [23], six studies were cohort studies with pre-and post-measures [24][25][26][27][28][29] and five studies were cross-sectional with retrospective measures [30][31][32][33][34]. The study populations comprised patients with all types of cancer for eight articles [24-26, 28, 29, 31-33], three included only patients with breast cancer [27,30,34] and one solely patients with breast and colon cancer [23]. ...
... Eight articles reported a sample size between 101-500 participants [23,24,[26][27][28][30][31][32]. Two articles included between 501-1000 participants [29,34] and one study included 1930 participants [33]. In all articles, at least 60% of participants were female. ...
... The type of service evaluated differ between the studies. In eight studies, the support services evaluated offered psychosocial support delivered by health care professionals with focus on psychological and/or social concerns [25,26,28,29,[31][32][33][34]. Two studies focused solely on complementary medicine [24,27] and two offered support by trained cancer survivors (volunteer mentoring) [23,30]. ...
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Abstract Background A diagnosis of cancer leaves most patients with cancer and their relatives with an increased psychological burden. Throughout the course of the illness, social, occupational or legal changes may lead to psychological distress. Psychosocial cancer support services offer psychological, social and legal support. However, little is known about the effectiveness of psychosocial support services implemented in health care. Therefore, this scoping review aims to provide an overview of current literature evaluating out-patient psychosocial support services. Methods Databases searched were PubMed, PsycINFO, PSYNDEX, PsycArticle, Medline, Web of Science, Google Scholar, Cochrane, and Embase. Two independent researchers conducted the systematic search. We included studies that were published in English and assessed at least one patient reported outcome measure. Studies that assessed psychotherapy, online support or telephone counselling were excluded. The review was reported according to PRISMA-ScR guidelines. A search of the databases identified 2104 articles. After excluding duplicates, screening titles, abstracts and full-texts, 12 studies matching the criteria were identified. Results One study was an RCT, six were prospective with no control group and five studies were cross-sectional with one measurement point. The most common outcome measures across studies were well-being, concerns and satisfaction with the support services. Conclusion While the included studies indicate some improvements to well-being for patients with cancer, the low number and lack of high quality of studies indicate these findings should be interpreted with caution. However, high-quality research on the effectiveness of psychosocial support services is needed to determine that the interventions are effective.
... MYCaW responses were coded and described according to validated and published guidelines. [17][18][19] Qualitative feedback from MYCaW, internally developed questionnaires, and semi-structured interviews was pooled and assessed for common and unique themes. ...
... This supports the focus of the program being peer support with facilitator-led discussions, and general practical information about health and wellness. A clinically meaningful change (considered to be 0.7-1.0 by related literature 19,25 ) was seen in the first concern noted by participants and in overall wellbeing score. Although there was a slight decline in mean scores for the second concern, the results from the MYCaW indicate encouraging trends toward an improvement in participants' self-identified concerns and overall wellbeing. ...
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Background Lung cancer is the leading cause of cancer mortality in Canada, yet patients are often under-supported. A six-week program called Inspire Now, created to address unmet supportive care needs, was evaluated in this study. Feasibility and preliminary outcomes were assessed in order to inform future changes to the program. Objectives (1) Assess the feasibility of the program and its evaluation; (2) pilot the collection of patient-reported outcomes; (3) identify outcomes that may be positively influenced; and (4) inform program modifications. Methods Participants were recruited from the first session of Inspire Now for an observational pilot study. The primary outcome was feasibility. Secondary outcomes included within-person changes in Functional Assessment of Cancer Therapy – Lung (FACT-L) and Measure Yourself Concerns and Wellbeing (MYCaW), and program satisfaction and qualitative experiences of participants and facilitators through internally-developed questionnaires and semi-structured interviews. Analysis was primarily descriptive, within person changes in FACT-L and MYCaW were analyzed using the Wilcoxon signed-rank test and qualitative data was assessed for common themes. Results The program and its evaluation were feasible; 8 of 9 (89%) participants consented to the study, median attendance was 6 of 6 sessions (IQR 4.5-6), and questionnaire completion was 100% at baseline and 75% at follow-up. There were clinically meaningful improvements in MYCaW concern 1 (−1.2, 95% CI −2.0 to −0.4) and overall wellbeing (−0.9, 95% CI −2.1 to 0.4). Seven of eight FACT-L sub-sections trended toward improvement, with absolute changes ranging from −1.7 to 10.8%. Participant feedback was overwhelmingly positive; group support and social interactions were highly valued. Conclusions The group intervention for people with lung cancer was feasible to both run and evaluate. Participants responded positively to the program. Findings will inform changes to future sessions and an analysis of multiple sessions is planned.
... It incorporates different forms of emotional and psycho-educational support as well as the use of complementary therapies to support physical symptoms. Regular service evaluations have been carried out to monitor its effectiveness [6,7]. The programme consists of an initial 1-hour consultation with an experienced BCH healthcare professional to assess each person's needs and to mutually agree on an appropriate therapy plan, followed by up to 10 hours of free individual one-to-one therapies. ...
... As far as we are aware, this is the first reported evaluation of a model of survivorship care developed specifically for people with secondary breast cancer. This approach would also be applicable and potentially beneficial for any breast cancer survivors as it is similar in content to other positively evaluated group support events offered at BCH [6,7]. Further research is needed in a larger sample of patients to explore and identify those components that address their unmet needs most effectively. ...
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It has been estimated that there are 36,000 women living with secondary breast cancer in the UK. Many feel isolated and unsupported, their information needs unmet and unaware of available support services such as palliative care or support groups that could help to improve their quality of life. To try to address these needs, a monthly support day was established in 2014 by the national UK breast cancer charity Breast Cancer Haven (BCH) at their Yorkshire centre. The support day provides an opportunity for personal introductions and discussion with other people with secondary breast cancer, to obtain information about breast cancer-related topics of their choice, to eat a healthy lunch and to experience a visualisation/relaxation session. To evaluate how helpful this support day was to its participants, they were asked to complete a feedback form at the end of the day. A total of 171 forms were completed from 26 support days during the period February 2014-July 2018. Participants stated that they found the support day helpful, relaxing, informative, supportive and enjoyable. All except two felt it met their needs and expectations and the majority found the length of the day just right. The personal introduction and discussion session were most frequently cited as the most useful part of the day, with the majority of participants (N = 144, 96.7%) rating it as very or moderately helpful. These findings show that the BCH support day, developed to address the needs of people with secondary breast cancer, is a model of survivorship care that can have a positive impact on their lives.
... This research implements qualitative method with purposive sampling technique. A quantitative data is used as supplementary to support the qualitative evidences as applied by Seers et al. (2009). Data were collected using semi-structured in-depth interview and survey in GENIUS@Pintar National Gifted College, Malaysia. ...
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Abstract. Music is believed to heal soul. It has been widely practiced to intervene emotional and psychological issues, and further improve students" achievements. However, music is rarely practiced as intervention for gifted students who suffer from the asynchronous development effects such as burnout, depression and suicide. This study thus aims to explore the prominence of music to gifted students. Data collection were conducted through in-depth interview with 15 gifted students who were studying in GENIUS@Pintar National Gifted Centre, Malaysia. A survey with 64 gifted respondents was administered as a supplementary to support the interview data. Results revealed that music offers assistance to gifted students in four domain areas which are emotion, motivation, self-reflection, and awareness. This study has proven that music has contributed beyond emotional and psychological issues. Music sharpens the traits of giftedness and moulds those gifted students as successors that may contribute to the nation.
... This research implements qualitative method with purposive sampling technique. A quantitative data is used as supplementary to support the qualitative evidences as applied by Seers et al. (2009). Data were collected using semi-structured in-depth interview and survey in GENIUS@Pintar National Gifted College, Malaysia. ...
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This study aim to explore music to cater asynchronous development issues facing by gifted students.
... Trialists should also consider the role of individualised, patient reported outcome measures (PROMs) and experience measures (PREMs) such as MYCaW (Measure Yourself Concerns and Wellbeing). MYCaW is validated for this patient group and captures both quantitative and qualitative data about the outcomes and experiences most important to each person [38,39] Quality control was another issue identified by both providers and cancer survivors. Given the known, substantial use of massage in Australia [3,4], compared to the relative undersupply by cancer services in this survey, it is likely that many cancer survivors who use massage access these services elsewhere. ...
Article
Objectives This study aimed to quantify massage service provision by Australian cancer services and explore providers’ and survivors’ views about massage services. Design A mixed-method study design combined data from a national cross-sectional survey of cancer services, an on-line survey of cancer survivors, and focus group or individual interviews with cancer survivors. Methods Quantitative and qualitative analyses of the data were merged using the principles of triangulation analysis for a thematic analysis. Results Three meta-themes were identified: 1) an under provision of high-quality massage services; 2) the perceived benefits of massage extend beyond symptomatic relief; and 3) the interrelated barriers to massage service provision and access reflect different values. Response rate for the national cancer services survey was 93.2% (n = 275/295), of which 18.1% (n = 50/275) provided massage. Service provision was not evenly distributed across the country with gaps in many regions. The 121 survivors who answered the online survey and 31 survivors who participated in the interviews affirmed this finding. Quality control was an important reason why survivors wanted cancer services to offer massage. Survivors reported numerous benefits from massage and valued the ‘human touch’. Overwhelmingly, finance was the greatest barrier that was interrelated with other barriers such as finding suitably qualified massage therapists and various information, evidence and logistical constraints. Conflicting findings included survivors stating the unavailability of massage services was an important barrier, whereas services reported low patient demand as a reason for not providing massage. An explanation given for not funding or using massage was the tendency to downplay the value of massage as a non-essential service; an attitude that was strongly refuted by some. Conclusions Massage is yet to be firmly established in cancer care across Australia. Balancing different views about the value of massage in supportive cancer care will be key to informing appropriate funding and service delivery.
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The use of mixed methods research in intervention trials mostly centers around using quantitative data to assess primary outcomes and qualitative data primarily for exploratory purposes, to supplement, and/or explain quantitative findings. We describe a novel mixed methods procedure that generates an integrated outcome variable used to reexamine unexpected findings that resulted from an advance care planning interventional randomized controlled trial. The integrated outcome variable helped explain apparent anomalies in study data that resulted from analyzing quantitative or qualitative data independently. The methodology outlined in this article provides a useful mixed methodological contribution by illustrating steps that may be taken by researchers seeking a more meaningful way to integrate qualitative and quantitative data to form intervention variables in trials.
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The aim of supportive cancer care is to actively manage patients' physical, psychologic, and spiritual concerns, independent of prognosis. Complementary and integrative medicine (CIM) is increasingly gaining greater acceptance and support for its beneficial value in supportive cancer care. The utilization of CIM early in the cancer trajectory, during treatment and during survivorship periods, as well as during end of life, addresses a great number of unmet needs that patients affected by cancer raise. In addition, recent research supports the role that CIM has in reducing suffering and distress both physically and emotionally, as well as enhancing well-being in patients affected by cancer and their families. CIM is increasingly seen not only as an adjunctive add-on treatment or perhaps even as a luxury item for the affluent but actually as an important component in supportive cancer care for all patients. It addresses many aspects of care that sometimes are not being addressed with conventional means. With the increase in CIM-related research, as well as the increased clinical experience in oncology programs worldwide, CIM is gradually becoming an essential ingredient in supportive and palliative cancer care. In this narrative review, the authors look systematically at the contribution that CIM has in supportive care in each stage of the cancer trajectory, reflecting the needed role that CIM has in supportive care. The presented data will provide a sampling of the available clinical research for each of the broad stages being described.
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