Conducting ethical internet-based research with vulnerable populations: a qualitative study of bereaved participants’ experiences of online questionnaires

Figures & data

Table 1. Non-responder and responder demographic variables, loss characteristics, and psychopathology symptoms.

	Non-responders	Responders
	(n = 576)	(n = 300)	Statistics
Demographics
Age (years), M(SD)	47.22 (12.73)	50.69 (12.50)	t(874) = −3.83*
Female, n (%)	471 (81.8)	237 (79.3)	χ^2 = .366^a
Highest level of education, n (%)			χ^2(6) = .123
No qualifications	22 (3.8)	7 (2.3)
O levels/GCSEs	70 (12.2)	27 (9.0)
A levels	64 (11.1)	26 (8.7)
Professional qualification (e.g. teaching, nursing)	80 (13.9)	50 (16.7)
NVQ/BTech/apprenticeship	48 (8.3)	39 (13.0)
University degree	164 (67.2)	80 (26.7)
Postgraduate degree	127 (22.1)	71 (23.7)
Ethnicity, n (%)			χ^2 = .135^a
Caucasian	552 (96.0)	281 (93.7)
Non-Caucasian^b	23 (4.0)	19 (6.3)
Loss characteristics
Months since loss, M (range) Mdn	41.71 (0–685) 14.00	35.87 (0–548) 15.50	t(874) = 1.25
Relationship of deceased, n(%)			χ^2(5) = .612
Spouse/partner	197 (34.2)	104 (34.7)
Child	93 (16.1)	61 (20.3)
Sibling	37 (6.4)	16 (5.3)
Parent	180 (31.3)	90 (30.0)
Other relative	55 (9.5)	22 (7.3)
Close non-relative	14 (2.4)	7 (2.3)
Relationship length (months), M(SD) Mdn	354.18 (179.96) 340.50	372.42 (185.94) 372.00	t(874) = −1.41
Cause of death, n (%)			χ^2 = .249^a
Non-violent^c	487 (84.7)	88 (15.3)
Violent^d	244 (81.6)	55 (18.4)
Psychopathology symptoms
Prolonged grief,^e M(SD)	31.76 (10.57)	32.35 (10.32)	t(874) = −.785
Depression,^f M(SD)	10.88 (7.55)	10.66 (7.41)	t(872) = .414
PTSD,^g M(SD)	29.64 (18.23)	29.30 (18.00)	t(871) = .198

^aFisher’s exact test (2×2).

^bGroups combined owing to low cell counts.

^cE.g. illness.

^dE.g. accident, suicide, homicide, medical negligence, accidental drug overdose.

^eMeasured using the 13-item Prolonged Grief scale (Prigerson & Maciejewski, 2008), range 11–55.

^fMeasured using the nine-item Patient Health Questionnaire (Kroencke, Spitzer, & Williams, 2001), range 0–27.

^gMeasured using the 20-item Posttraumatic Stress Disorder Checklist for DSM-5 (Weathers et al., 2013), range 0–80.

*p < .001.

Table 2. Frequencies of superordinate and subordinate themes.

Superordinate theme	Frequency, n (%)	Subordinate theme	Frequency, n (%)
Emotional impact^a	215 (72)	Okay	95 (32)
		Temporary negative	69 (23)
		No change	41 (14)
		Positive	6 (2)
		Negative	5 (2)
Appreciation	169 (56)	Appreciation of check-in email	139 (46)
		Pleased to be taking part	42 (14)
		Appreciation of opportunity to think/share	15 (5)
Offering more	146 (49)	Sharing more of story	83 (28)
		Grief reflections	62 (21)
		Offer to help more	59 (20)
Participation	105 (35)	I want to help other people	46 (15)
		Found study interesting	26 (9)
		Experience of study process	24 (8)
		Coping strategy after questionnaires	23 (8)
Realizations	46 (15)	Self-awareness	18 (6)
		Seeing where I am at	17 (6)
		Normalizing	10 (3)
		Noticing progress	8 (3)
Cognitive impact	41 (14)	Reflective processing	22 (7)
		Increased thinking	18 (6)
		Induced dreams	4 (1)
Physical impact	12 (4)	Negative impact	10 (3)
		Positive impact	2 (1)
No reflection included	10 (3)

Percentages reflect the proportion of the total number of responders (n = 300) who included a comment coded under that theme.

^aEmails that included reflections on emotional impact were only coded under one subordinate theme.

Prigerson, H. G., & Maciejewski, P. K. (2008). Prolonged grief disorder (PG-13) scale. Boston, MA: Dana-Farber Cancer Institute.

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Kroencke, K., Spitzer, R., & Williams, J. (2001). The PHQ-9: Validity of a brief depression severity measure. Journal of General Internal Medicine, 16(9), 606–613.

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Weathers, F. W., Litz, B. T., Keane, T. M., Palmieri, P., Marx, B. P., & Schnurr, P. P. (2013). The PTSD checklist for DSM-5 (PCL-5). Retrieved from http://www.ptsd.va.gov

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