The life in sight application study (LISA): design of a randomized controlled trial to assess the role of an assisted structured reflection on life events and ultimate life goals to improve quality of life of cancer patients

Kruizinga, Renske; Scherer-Rath, Michael; Schilderman, J.B.A.M.; Sprangers, Mirjam A. G.; Laarhoven, Hanneke W. M. van

doi:10.1186/1471-2407-13-360

Cited by 18 publications

(29 citation statements)

References 43 publications

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“…Integrating advanced cancer in one's narrative of life, however, is challenging, and feelings of hopelessness, depression, and even the desire for a hastened death were found to be common among patients with advanced cancer . Therefore, care for patients with advanced cancer needs to address psychosocial, spiritual and existential health in addition to physical health . Despite improvements in cancer care in developed countries, these nonphysical domains remain largely unattended …”

Section: Introductionmentioning

confidence: 99%

“…The diagnosis of advanced, incurable cancer is likely to have a profound impact on people. [1][2][3][4][5] The limited lifetime left may directly conflict with the goals people have in life, and, as such, may entail an experience of contingency. 3,4 Contingency refers to the randomness of life, that everything could have been different.…”

Section: Introductionmentioning

confidence: 99%

“…[1][2][3][4][5] The limited lifetime left may directly conflict with the goals people have in life, and, as such, may entail an experience of contingency. 3,4 Contingency refers to the randomness of life, that everything could have been different. [3][4][5][6] When life goals are jeopardized, questions like "why me" and "why now" may arise.…”

Section: Introductionmentioning

confidence: 99%

“…3,4 Contingency refers to the randomness of life, that everything could have been different. [3][4][5][6] When life goals are jeopardized, questions like "why me" and "why now" may arise. 1,4,5,7 Patients need to make meaning of their life with cancer and incorporate diagnosis and prognosis in their life story.…”

Section: Introductionmentioning

confidence: 99%

“…1,2 Therefore, care for patients with advanced cancer needs to address psychosocial, spiritual and existential health in addition to physical health. 3,[7][8][9][10] Despite improvements in cancer care in developed countries, these nonphysical domains remain largely unattended. [10][11][12] The experience of contingency can be conceptualized as an interpretation crisis, and people may not be able to find words to express what is happening to them, that is, words may be insufficient in capturing intense experiences.…”

Section: Introductionmentioning

confidence: 99%

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Living with advanced cancer: Rich Pictures as a means for health care providers to explore the experiences of advanced cancer patients

et al. 2019

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Background To provide holistic care to patients with advanced cancer, health care professionals need to gain insight in patients’ experiences across the different domains of health. However, describing such complex experiences verbally may be difficult for patients. The use of a visual tool, such as Rich Pictures (RPs) could be helpful. We explore the use of RPs to gain insight in the experiences of patients with advanced cancer. Methods Eighteen patients with advanced cancer were asked to draw a RP expressing how they experienced living with cancer, followed by a semi‐structured interview. Qualitative content analysis, including the examination of all elements in the drawings and their interrelationships, was used to analyze the RPs, which was further informed by the interviews. Results The RPs clearly showed what was most important to an individual patient and made relations between elements visible at a glance. Themes identified included: medical aspects, the experience of loss, feelings related to loss, support from others and meaningful activities, and integration of cancer in one's life. The added value of RPs lies in the ability to represent these themes in one single snapshot. Conclusions RPs allow for a complementary view on the experiences of advanced cancer patients, as they show and relate different aspects of patients’ lives. A RP can provide health care professionals a visual summary of the experiences of a patient. For patients, telling their story to health care professionals might be facilitated when using RPs.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Living with advanced cancer: Rich Pictures as a means for health care providers to explore the experiences of advanced cancer patients

et al. 2019

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Professional identity at stake: a phenomenological analysis of spiritual counselors’ experiences working with a structured model to provide care to palliative cancer patients

Kruizinga

Helmich

Schilderman

et al. 2016

Support Care Cancer

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BackgroundGood palliative care requires excellent interprofessional collaboration; however, working in interprofessional teams may be challenging and difficult.AimThe aim of the study is to understand the lived experience of spiritual counselors working with a new structured method in offering spiritual care to palliative patients in relation to a multidisciplinary health care team.DesignInterpretive phenomenological analysis of in-depth interviews, was done using template analysis to structure the data. We included nine spiritual counselors who are trained in using the new structured method to provide spiritual care for advanced cancer patients.ResultsAlthough the spiritual counselors were experiencing struggles with structure and iPad, they were immediately willing to work with the new structured method as they expected the visibility and professionalization of their profession to improve. In this process, they experienced a need to adapt to a certain role while working with the new method and described how the identities of the profession were challenged.ConclusionsThere is a need to concretize, professionalize, and substantiate the work of spiritual counselors in a health care setting, to enhance visibility for patients and improve interprofessional collaboration with other health care workers. However, introducing new methods to spiritual counselors is not easy, as this may challenge or jeopardize their current professional identities. Therefore, we recommend to engage spiritual counselors early in processes of change to ensure that the core of who they are as professionals remains reflected in their work.

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The pervasive nature of uncertainty—a qualitative study of patients with advanced cancer and their informal caregivers

et al. 2017

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PurposeThe aim of this study was to explore the impact of extended cancer survival on broader aspects of life and wellbeing such as occupational, financial and family life for patients with advanced cancer and their nominated informal caregivers.MethodsIn-depth qualitative interviews were transcribed verbatim. A thematic framework was developed from an initial process of open coding and tested iteratively as new data were collected.ResultsTwenty-four patient-caregiver dyads with advanced ovarian (9), melanoma (9) or lung cancer (6). Patients were aged 39–84 (median 62 years) and caregivers 19–85 (median 54 years). Caregivers were the partners/spouses (15), children (5), siblings (2) and friends (2) of patients. One particular theme, ‘uncertainty’, encompassed many issues such as planning for the future, providing for one’s family, employment and finances. Uncertainties were related to the timescale and trajectory of the disease and lack of control or ability to make plans. There were marked age effects. Accounts from within the same dyad often differed and patients and caregivers rarely discussed concerns with each other.ConclusionsBoth patients and their informal caregivers were challenged by the uncertainties around living with advanced cancer and the lack of a defined trajectory. This impacted many diverse areas of life. Although distressing, dyads seldom discussed these concerns with each other.Implications for Cancer SurvivorsUncertainty is a recurrent issue for cancer survivors and their families impacting broad aspects of their lives and their ability to move forward; however, patients and caregivers in this study rarely discussed these concerns together. Uncertainty should be discussed periodically, together, and healthcare professionals could facilitate these discussions. The use of one or more ‘trigger questions’ in clinic appointments may provide an opportunity to start these dialogues.Electronic supplementary materialThe online version of this article (doi:10.1007/s11764-017-0628-x) contains supplementary material, which is available to authorized users.

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The life in sight application study (LISA): design of a randomized controlled trial to assess the role of an assisted structured reflection on life events and ultimate life goals to improve quality of life of cancer patients

Cited by 18 publications

References 43 publications

Living with advanced cancer: Rich Pictures as a means for health care providers to explore the experiences of advanced cancer patients

Living with advanced cancer: Rich Pictures as a means for health care providers to explore the experiences of advanced cancer patients

Professional identity at stake: a phenomenological analysis of spiritual counselors’ experiences working with a structured model to provide care to palliative cancer patients

The pervasive nature of uncertainty—a qualitative study of patients with advanced cancer and their informal caregivers

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