A Pilot Study of the Experience of Family Caregivers of Patients With Advanced Pancreatic Cancer Using a Mixed Methods Approach

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].”

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].”

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].”

Guilt also arose when patients developed treatment side effects as caregivers viewed themselves as responsible in causing the side effects due to their role in supporting patients to receive treatment.

“Guilt also arose when patients developed treatment side effects as caregivers viewed themselves as responsible in causing the side effects due to their role in supporting patients to receive treatment [29, 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.”

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.”

Informal caregivers of pancreatic cancer patients have an unmet need for better clinical communication.

“Two studies raised the need for better clinical communication [27, 29].”

Informal caregivers experienced guilt for pressuring patients to adhere to a dietary regimen or treatment plan.

“Apart from inability to control symptoms, informal caregivers also experienced guilt for pressuring patients to adhere to a dietary regimen or treatment plan [29, 30].”

Three studies contained qualitative data illustrating caregiver burden.

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

Informal caregivers suggested a need for 'a point person to serve as coordinator'.

“They suggested there was a need for ‘a point person to serve as coordinator’ [29].”

Some informal caregivers reported unsatisfactory communication of medical decisions and rationales.

“Unsatisfactory communication of medical decisions and rationales was reported by some informal caregivers [29].”

Cancer patients tend to experience severe symptoms more frequently and have a sharper decline in quality-of-life compared to other chronic diseases, particularly in pancreatic cancer.

“Cancer patients tend to experience severe symptoms more frequently and to have a sharper decline in quality-of-life when compared to other chronic diseases [29]; this is particularly true in pancreatic cancer [2].”

Timing of delivery of diagnosis was problematic, with the possibility of cancer not mentioned until after surgery.

“Timing of delivery of diagnosis was also problematic with the possibility of cancer not mentioned ‘until after the surgery’ [29].”

Healthcare policies and reforms in many countries now prioritize patients taking a more active role in self-managing their illness; to effectively self-manage, patients need support, and that support often comes from a family member or friends.

“Healthcare policies and reforms in many countries now prioritize patients taking a more active role in (self-)managing their illness [29]; to effectively self-manage, patients need support, and that support often comes from a family member or friends [29].”

Health institutes' policies increasingly push for shorter length of hospital stay and more outpatient care, thus placing greater responsibility on partners and families to supplement care received from professionals.

“Furthermore, health institutes’ policies also increasingly push for shorter length of hospital stay and more outpatient care thus placing greater responsibility on partners and families to supplement care received from professionals [29].”

Informal caregivers reported ineffective patient-clinician communication, including inconsistent advice and information overload or underload.

“Informal caregivers reported ineffective patient-clinician communication by mentioning, ‘inconsistent advice’ and ‘information overload [or] underload’ [29].”