Flying the nest: a challenge for young adults with cystic fibrosis and their parents

Figures & data

Table 1 Frequency data of young adults’ reports on difficulties in managing the disease (n=35)

Questionnaire item	Quite or mostly right, % (n)	Quite or mostly wrong, % (n)	Do not know, % (n)
It is difficult for me to cope with everything concerning my CF treatment	23 (8)	71 (25)	6 (2)
It is difficult for me to find time to take my CF treatment	20 (7)	77 (27)	3 (1)
It is difficult for me to remember to take my CF treatment	31 (11)	69 (24)	0 (0)
It is difficult for me to afford the medicine	23 (8)	74 (26)	3 (1)
It is difficult for me to afford good CF-focused meals	40 (14)	54 (19)	6 (2)
It is difficult for me to get around to cooking good CF-focused meals	43 (15)	46 (16)	11 (4)
It is difficult for me to get around to getting the medicine from the pharmacy	31 (11)	69 (24)	0 (0)
I do not know my rights in receiving financial support from the public sector	46 (16)	48 (17)	6 (2)
I have difficulty in contacting social services (eg, finding time to phone them or understanding what they say)	37 (13)	31.5 (11)	31.5 (11)

Abbreviation: CF, cystic fibrosis.

Table 2 Frequency data of parental reports on difficulties regarding their child’s disease management (n=61)

Questionnaire item	Quite or mostly right, % (n)	Quite or mostly wrong, % (n)	Do not know, % (n)
It is difficult for me to know how to best assist my child	51 (31)	44 (27)	5 (3)
It is difficult for me to answer his/her questions concerning CF	48 (29)	41 (25)	11 (7)
It is difficult for me to answer his/her questions concerning social rights	67 (41)	26 (16)	7 (4)
It is difficult for me to stand by when he/she does not adhere to treatment	74 (45)	21 (13)	5 (3)
It is difficult for me to know how much to interfere in my child’s CF management	54 (33)	43 (26)	3 (2)
It is difficult for me to relinquish control of my child and his/her CF management	53 (32)	44 (27)	3 (2)
It is difficult for me to ask my child’s permission to help him/her	38 (23)	56 (34)	7 (4)

Abbreviation: CF, cystic fibrosis.

Table 3 Frequency data of young adult and parental reports on degree of task-sharing in managing CF

Tasks associated with CF	Housing status	Adolescent does it		Parents do it		Not relevant
		Young adults, % (n)	Parents, % (n)	Young adults, % (n)	Parents, % (n)	Young adults, % (n)	Parents, % (n)
Order medicine at the pharmacy	Living at home	35 (8)	37 (14)	65 (15)	55 (21)	0 (0)	8 (3)
	Moved out of home	87 (31)	82 (50)	9 (3)	13 (8)	3 (1)	5 (3)
Collect medicine at the pharmacy	Living at home	39 (9)	29 (11)	61 (14)	61 (23)	0 (0)	10 (4)
	Moved out of home	77 (27)	69 (42)	20 (7)	26 (16)	3 (1)	5 (3)
Prepare for inhalation	Living at home	83 (19)	74 (28)	8 (2)	13 (5)	9 (2)	13 (5)
	Moved out of home	87 (31)	79 (48)	0 (0)	3 (2)	11 (4)	18 (11)
Clean up after inhalation	Living at home	65 (15)	50 (19)	26 (6)	37 (14)	9 (2)	13 (5)
	Moved out of home	89 (31)	74 (45)	0 (0)	5 (3)	11 (4)	21 (13)
Collect the PEP mask when time for pepping	Living at home	87 (20)	28 (26)	0 (0)	3 (1)	13 (3)	29 (11)
	Moved out of home	87 (31)	70 (43)	0 (0)	2 (1)	11 (4)	28 (17)
Cleaning the PEP mask	Living at home	48 (11)	26 (10)	30 (7)	42 (16)	22 (5)	32 (12)
	Moved out of home	86 (30)	64 (39)	3 (1)	5 (3)	11 (4)	31 (19)
Prepare IV antibiotic treatment	Living at home	30 (7)	13 (5)	17 (4)	42 (16)	53 (12)	45 (17)
	Moved out of home	63 (22)	57 (35)	14 (5)	18 (11)	23 (8)	25 (15)
Clean up after IV treatment	Living at home	26 (6)	16 (6)	22 (5)	37 (14)	52 (12)	47 (18)
	Moved out of home	66 (23)	56 (34)	11 (4)	20 (12)	23 (8)	24 (15)
Notice when medicine is running out	Living at home	57 (13)	47 (18)	44 (10)	45 (17)	0 (0)	8 (3)
	Moved out of home	91 (32)	80 (49)	9 (3)	12 (7)	0 (0)	8 (5)

Abbreviations: CF, cystic fibrosis; IV, intravenous; PEP, positive expiratory pressure.

Table 4 Characteristics of participants, nonparticipants, and retested participants

Characteristics	Participants	Nonparticipants	Significance (two-tailed)
Young adults (n)	58	36
Male/female (%)a	38/62	61/39	0.048
Living at home/moved out of home (%)	40/60	59/41	0.118
Age (years, mean ± SD)b	21.2±1.9	20.9±2.6	0.358
Age (years, mean ± SD)b of the young adults living at home/moved out of home	20.1±1.4/22.0±1.8
FEV1% (mean ± SD)b	83.5±23.5	72.7±26.0	0.054
BMI (kg/m^2, mean ± SD)b	21.5±3.6	20.1±2.8	0.082
Parents (n)	99	89
Male/female (%)a	45/55	55/45	0.243
Child’s FEV1% (mean ± SD)b	82.2±25.1	76.3±24.4	0.078

Notes:

a Pearson χ²;

b independent-samples Mann–Whitney U-test.

Abbreviations: BMI, body mass index; FEV₁%, forced expiratory volume in 1 s as a percentage of predicted FEV; SD, standard deviation.

Table 5 Frequency data of young adult and parental reports on adherence among young adults who live at home or out of the home

Adherence level	Young adult perspective		Parent perspective
	Living at home, % (n)	Moved out of the home, % (n)	Their child lived at home, % (n) of parentsa	Their child had moved out of the home, % (n) of parentsb
High adherence	48 (11)	43 (15)	56 (19)	57 (27)
Medium adherence	48 (11)	31 (11)	35 (12)	30 (14)
Low adherence	4 (1)	26 (9)	9 (3)	13 (6)

Notes:

a Four out of 38 parents answered “do not know”;

b 14 out of 47 parents answered “do not know”.