“Alas … my sickness becomes my family's burden”: A nested qualitative study on the experience of advanced breast cancer patients across the disease trajectory in Indonesia

Prabandari, Yayi Suryo; Hartanti, Wika; Syafriani, -; Widiastuti, Mentari; Witaningrum, Riani; Hutajulu, Susanna Hilda; Allsop, Matthew J

doi:10.1016/j.breast.2022.04.001

Cited by 5 publications

(10 citation statements)

References 31 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The studies were conducted in the United States (n = 13, 27.1%) [ 33 – 35 , 38 , 45 , 46 , 48 , 49 , 63 , 67 , 72 , 73 , 79 ], UK or Ireland (n = 11, 22.9%) [ 36 , 41 , 51 – 53 , 56 , 71 , 75 – 78 ], Canada (n = 7, 14.6%) [ 39 , 50 , 54 , 61 , 65 , 69 , 70 ], Taiwan (n = 4, 8.3%) [ 42 , 57 , 58 , 66 ], Sweden (n = 4, 8.3%) [ 32 , 55 , 60 , 74 ], China (n = 2, 4.2%) [ 37 , 68 ], and Germany (n = 2, 4.2%) [ 40 , 59 ]. The remaining five studies were conducted in Australia, Turkey, Thailand, Denmark, and Indonesia (each n = 1) [ 43 , 44 , 47 , 62 , 64 ].…”

Section: Resultsmentioning

confidence: 99%

“…The studies included 1250 participants (median 16, range 3 to 178 participants), and collected qualitative data through interviews (n = 33, 68.8%) [ 36 – 42 , 44 , 46 – 50 , 52 , 53 , 55 – 58 , 60 – 62 , 64 – 68 , 72 – 75 , 77 , 78 ], focus groups (n = 6, 12.5%) [ 32 , 33 , 45 , 51 , 54 , 59 ], free text written responses (n = 1, 2.1%) [ 63 ], or a combination of approaches such as interviewing and focus groups, integration of diary, drawing methods, and free text responses (n = 8, 16.7%) [ 34 , 35 , 43 , 69 – 71 , 76 , 79 ].…”

Section: Resultsmentioning

confidence: 99%

“…Key personal resources were time; finances; existing knowledge and skills (such as communication skills, or the ability to find, assimilate, and appraise health information); and social networks. Most studies emphasised the importance of social support for psychological well-being and for delegating certain health care tasks (exemplar quotations are in Table 3 ) [ 34 , 37 , 42 , 44 – 47 , 49 , 54 , 60 , 61 , 63 , 65 , 66 , 69 , 76 , 79 ].…”

Section: Resultsmentioning

confidence: 99%

“…Several studies [ 34 , 44 , 47 , 48 , 67 , 75 ] discussed the impact of financial resources being depleted due to cancer. Paying for cancer-related expenses meant that some individuals were struggling to afford necessities, were in debt, had lost savings, or were experiencing worry.…”

Section: Resultsmentioning

confidence: 99%

See 3 more Smart Citations

Treatment burden in individuals living with and beyond cancer: A systematic review of qualitative literature

Adam,

Nair,

Duncan

et al. 2023

PLoS ONE

View full text Add to dashboard Cite

Background Individuals with cancer are being given increasing responsibility for the self-management of their health and illness. In other chronic diseases, individuals who experience treatment burden are at risk of poorer health outcomes. Less is known about treatment burden and its impact on individuals with cancer. This systematic review investigated perceptions of treatment burden in individuals living with and beyond cancer. Methods and findings Medline, CINAHL and EMBASE databases were searched for qualitative studies that explored treatment burden in individuals with a diagnosis of breast, prostate, colorectal, or lung cancer at any stage of their diagnostic/treatment trajectory. Descriptive and thematic analyses were conducted. Study quality was assessed using a modified CASP checklist. The review protocol was registered on PROSPERO (CRD42021145601). Forty-eight studies were included. Health management after cancer involved cognitive, practical, and relational work for patients. Individuals were motivated to perform health management work to improve life-expectancy, manage symptoms, and regain a sense of normality. Performing health care work could be empowering and gave individuals a sense of control. Treatment burden occurred when there was a mismatch between the resources needed for health management and their availability. Individuals with chronic and severe symptoms, financial challenges, language barriers, and limited social support are particularly at risk of treatment burden. For those with advanced cancer, consumption of time and energy by health care work is a significant burden. Conclusion Treatment burden could be an important mediator of inequities in cancer outcomes. Many of the factors leading to treatment burden in individuals with cancer are potentially modifiable. Clinicians should consider carefully what they are asking or expecting patients to do, and the resources required, including how much patient time will be consumed.

show abstract

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

Treatment burden in individuals living with and beyond cancer: A systematic review of qualitative literature

Adam,

Nair,

Duncan

et al. 2023

PLoS ONE

View full text Add to dashboard Cite

show abstract

“…Several factors might influence the longer lag time for the patients with retinoblastoma in Indonesia. The extensive belief in alternative medicines and extended delay until symptoms get worse were the most reported motives in delays for seeking medical treatment in Indonesia [52][53] . Moreover, a major treatment-related delay also occurred due to direct non-medical expenses such as transportation and accommodation for the patient's caregivers [54][55][56] .…”

Section: Discussionmentioning

confidence: 99%

Lag time, high-risk histopathological features, metastasis, and survival interrelation in retinoblastoma: a perspective from lower-middle income country

Utomo¹,

Ardianto²,

Rinonce³

et al. 2022

Int J Ophthalmol

View full text Add to dashboard Cite

AIM: To investigate the impact of lag time to metastasis and survival rates among patients with retinoblastoma. METHODS: This retrospective study was conducted with 52 patients from the Department of Ophthalmology and the Department of Pediatrics of Dr. Sardjito General Hospital, between 1st January 2014 and 31st December 2020. Lag time was defined as the time delay between the first sign of retinoblastoma to the diagnosis of retinoblastoma. The subjects with lag time > one year were included in the case group, while the subjects with lag time < one year were included in the control group. RESULTS: The lag time was significantly correlated with American Joint Committee on Cancer and Intraocular Classification of Retinoblastoma staging of retinoblastoma (P=0.005 and P=0.006, respectively). The lag time was also significantly correlated with both metastasis event [odds ratio (OR): 5.06, 95%Cl: 1.56-16.44, P=0.006] and mortality (OR: 4.54, 95%Cl: 1.37-15.07, P=0.011). The follow-up was continued for 32 subjects for 3y after initial diagnoses. Survival analysis revealed a significant difference among these two groups (P=0.021). Furthermore, lag time was significantly correlated with survival of retinoblastoma (r=-0.53, P=0.046). CONCLUSION: The study highlights the importance of lag time between the onset of first symptoms and the time of retinoblastoma diagnosis which significantly contribute to metastasis and mortality of patients with retinoblastoma. Examinations for the early detection of retinoblastoma should be performed for individuals at-risk to minimize lag time and improve the outcomes.

show abstract

Benefits of Spiritual and Religious Support in the Pain Management of Cancer Patients: A Literature Scoping Review

Cavalcanti

Costa²,

Soares³

et al. 2022

J Relig Health

View full text Add to dashboard Cite

“Alas … my sickness becomes my family's burden”: A nested qualitative study on the experience of advanced breast cancer patients across the disease trajectory in Indonesia

Cited by 5 publications

References 31 publications

Treatment burden in individuals living with and beyond cancer: A systematic review of qualitative literature

Treatment burden in individuals living with and beyond cancer: A systematic review of qualitative literature

Lag time, high-risk histopathological features, metastasis, and survival interrelation in retinoblastoma: a perspective from lower-middle income country

Benefits of Spiritual and Religious Support in the Pain Management of Cancer Patients: A Literature Scoping Review

Contact Info

Product

Resources

About