Using photography to explore psychological distress in patients with pancreatic cancer and their caregivers: a qualitative study

Eight included studies were cross-sectional studies and one study was a prospective cohort design.

“Eight studies were cross-sectional studies [5, 27–33]. One study was a prospective cohort design [6].”

From a maximum of 22 points, three qualitative studies scored 17 points and two scored 18 points.

“From a maximum of 22 points, three studies scored 17 points [27–30] and two studies scored 18 points [31].”

Five included studies were conducted in the USA, three in Australia, and one in Denmark.

“Five studies (three qualitative, two quantitative) were conducted in the USA [5, 28, 29, 31, 33], three (two qualitative, one quantitative) in Australia [27, 30, 32] and one quantitative study in Denmark [6].”

Informal caregivers were predominantly spouses to patients with pancreatic cancer (98.6%, 6058/6142).

“Informal caregivers were predominantly spouses to patients with pancreatic cancer (98.6%, 6058/6142) [5, 6, 28, 33, 34].”

Digestive symptoms (loss of appetite, weight loss, nausea, and constipation) and side effects of treatment were sources of informal caregivers' distress.

“Digestive symptoms (for example, loss of appetite [28, 30], weight loss [30], nausea [28], and constipation [28]) and side effects of treatment [28] were the sources of informal caregivers’ distress.”

Informal caregivers of pancreatic cancer patients have an unmet need for support and briefings from health care professionals.

“Three studies raised the need for support and briefings from health care professionals [28, 31] or a support system for informal caregivers [27, 31].”

Informal caregivers were also distressed by tension in the patient-caregiver relationship which arose when patients were unwilling/unable to continue a treatment plan.

“Informal caregivers were also distressed by tension in the patient-caregiver relationship which arose when patients were unwilling/unable to continue a treatment plan [28].”

Data was collected through questionnaires alone in four studies, semi-structured interviews with individual participants in three studies, focus groups in two studies, and questionnaire and semi-structured interview together in one study.

“Data was collected through questionnaires alone in four studies [5, 32, 33], semi-structured interviews with individual participants in three studies [29–31], focus groups in two studies [27, 28] and questionnaire and semi-structured interview together in one study [29].”

Informal caregivers of pancreatic cancer patients have an unmet need for help with navigating the health care system.

“Two studies raised the need for help with navigating health systems [28, 29].”

Three studies contained qualitative data illustrating caregiver burden.

“Three studies contained qualitative data illustrating caregiver burden [28–30].”

Four studies reported qualitative data on unmet needs of informal caregivers of pancreatic cancer patients, and no quantitative data on unmet needs was available.

“Four studies reported qualitative data on unmet needs of informal caregivers [27–29, 31]. No quantitative data was available on unmet needs.”

In the context of pancreatic cancer, the transition into the caregiver role occurs very suddenly, and informal caregivers find themselves required to learn new medical information, coordinate appointments, manage medications, diet and nutrition, search for clinical trials and alternative treatments, and prepare for medical emergencies within a short time span.

“In the context of pancreatic cancer, the transition into caregiver role occurs very suddenly, and informal caregivers find themselves required to learn new medical information, coordinate appointment, manage medications, diet and nutrition, search for clinical trials and alternative treatments and prepare for medical emergencies within a short time span [28].”

Informal caregivers felt there was a lack of interaction with medical providers or questions from medical professionals about their wellbeing despite their involvement in cancer care delivery.

“Informal caregivers felt there was a lack of interaction with medical providers or questions from medical professionals about their wellbeing despite their involvement in cancer care delivery [28].”

Informal caregivers felt 'lost in the health care system'.

“Informal caregivers felt ‘lost in the health care system’ [28].”

The lack of consideration for the relationship between researcher and participants and unsatisfactory data analysis were the two most frequent reasons points were deducted during quality assessments.

“The lack of consideration for the relationship between researcher and participants [30, 31] and unsatisfactory data analysis [27–30] were the two most frequent reasons points were deducted during quality assessments.”