Caregivers of children with diabetes mellitus: challenges of caring for and perceptions of consultations in a South African public sector context

Figures & data

Table 1: Caregiver characteristics (n = 14)

Gender—female	14 (100%)
Age in years—mean (SD)	38 (±15)
Primary caregiver—mother	9 (64%)
Primary caregiver—aunt	3 (22%)
Primary caregiver—grandmother	2 (14%)
Diabetes caregiving years (total)	47.4
Caregiver experience in years—mean (SD)	3.4 (±2.6)
Caregiver employed	2 (14%)
Caregiver unemployed	10 (72%)
Caregiver pensioner	2 (14%)
Family living together	2 (14%)
Family not living together	11 (79%)

Table 2: Child characteristics (n = 14)

Gender—female	10 (71%)
Gender—male	3 (29%)
Age in years—mean (SD)	10 (±3.7)
T1DM	13 (93%)
T2DM (no insulin)	1 (7%)
Age at diagnosis—mean (SD)	6.7 (±3.7)

Table 3: Caregivers’ challenges in caring for their child with DM

Global theme	Organising theme	Basic theme
DM care is difficult	A. Emotionally
- Diagnosis	(a) Caregiver	1. Painful/sadness
- No cure, lifelong		- ‘the pain’
- Injections		- ‘heart sore’
- Many changes		- ‘painful heart’
		2. Fear
		- ‘scared’
		- ‘see they don’t get hurt’
		- ‘something is gonna happen to her’
		3. Uncertainty/overwhelmed
		- ‘don’t know … future … ’
		- ‘face new things’
		- ‘didn’t know where to begin’
		- ‘you never know if you doing enough or not’
		4. Loss
		- of normal child
		- of opportunities
		- of child’s future ‘lifelong’
		5. Grief
		- ‘My God what did I do?’
		- ‘What happened that caused my child to be diabetic?’
		- ‘I cried and said it would have been better if I had it’
		6. Stress
		- ‘lost my mind’
		- ‘stressful’
		- ‘stressed to the limit’
	(b) Child	1. Negative emotions
		‘ … crying with injections’
		‘ … he has doubts’
		‘ … he doesn’t want to’
		‘ … he gets angry’
		‘ … very, very emotional and she gets depressed’
		‘ … she’s hard-headed’
	B. Practically
	(a) Diabetes-specific	1. Learning new tasks
		- SMBG* readings
		- Injecting insulin
		- Different insulins
		- ‘Hypers’ and ‘hypos’
		- Corrections
		- Glucagon
		2. Accepting injections (most cases)
		3. Diet compliance
		- Many details
		- ‘Carb counting’
		- ‘Trial and error’
		4. Travel to consultations
		- Long distances
		- Overnight, long hours
		- ‘ … very strenuous’
		- Siblings in care of ‘neighbours’
		5. Unpredictable and erratic SMBGs
		- ‘ … really confuses me a lot’
		- Fear of severe hypo
	(b) Daily living	1. Tiring
		- ‘I don’t get enough sleep. I’m tired most of the times’
		- ‘ … exhausting’
		2. Time-consuming
		- ‘ … lot that happens’
		3. School
		- ‘ … eats sweets, snacks’
		- Poor support  - Educators lack understanding e.g. polyuria and hypers
		4. Play, sport, activities
		- ‘ … long distances’
		- Caregiver ‘must go too’ or miss sport
		5. Others
		- Transport to hospital when acutely ill
	C. Financially
	(a) Diabetes-specific	1. Specific diet
		- ‘I can’t follow the diet’
		2. Insufficient glucose test strips
		- ‘ … expensive’
	(b) Daily living	1. Social grant dependent, i.e. unemployed
		2. Many dependents in family
		- ‘ … there’s a lot of us at home’
		- ‘ … other child also needs money’
		3. University fees
		4. ‘ … when kids grow up especially girls they want this and that’
	D. Behaviourally
	(a) Child	1. Anger 2. Fear 3. Defiance
	(b) Siblings	1. Jealousy
	E. Socially
	(a) Caregiver	1. No personal relationships
		2. Leave or loss of job/work
		3. Having a new baby/other children
		4. Poor family support
		- Others are ‘scared’
		- No partner support
	(b) Child	1. Stigma
		2. Rejected by family
Process of adjustment	A. Emotionally
- At each stage	(a) Caregiver	1. Negative to positive
- Responsive		- Grieving process
- Continual		- ‘ … as time went on I accepted’
- Flexible		- ‘I used to be terrible but I’m better now’
		2. Stress
		- ‘I got through it since I received counselling’
		3. Competence
		- ‘I sleep most nights’
		- ‘ … can live with’
		- ‘ … it’s just getting easier’
		- ‘I now know I can do’
	(b) Child	1. Improvement/accepting
		- ‘ … does not cry anymore’
	B. Practically
	(a) DM-specific	1. Hyper and hypo symptoms
		- ‘ … child is in trouble I can see’
		2. Finger pricks and injections
		- ‘ … he is also used to it’
		- ‘ … not a problem anymore’
		3. Improved diet compliance
	(b) Daily living	1. Family support helpful (when available)
	C. Financially
		1. Social grant income useful
		2. Remained a problem for most
	D. Behaviourally
		1. Care by psychologist
	E. Socially
		1. Care by social worker

*SMBG—self-monitored blood glucose.

Table 4: Caregiver feelings of care consultations with the MDT

Global theme	Organising theme	Basic theme
Overall consultations	A. Positive feelings	1. Gratitude
		- ‘I am very grateful’
		- ‘ … to just thank them’
		2. Relief, sense of control
		- ‘ … can live with this disease’
		3. Supportive/Friendly
		- ‘ … can console you’
		- ‘That makes me happy’
		- ‘ … we are nothing without them’
		- ‘ … they all very friendly’
		4. Helpful, competent
		- ‘ … hospital helped me a lot’
		- ‘ … doctors explain well’
		- ‘ … they are very good’
		- ‘ … if I’m confused … make it quite clear for me’
		5. Satisfaction
		- ‘ … we are well treated’
		- ‘ … nurses treat us well’
		- ‘ … hospital they fixed it’
		- ‘I feel well taken care of’
		- ‘ … do their jobs efficiently’
		- ‘ … faster than before’
		- ‘ … I am satisfied for now’
	B. Negative feelings	1. Boredom at visit
		- ‘ … just sitting there waiting’
		2. Frustration
		- specific needs not met
		- group sessions repetitive
		3. Long waiting times
		4. Other hospitals to improve
		5. Medication available closer
MDT’s helpfulness and support	A. Diabetes specific needs	1. DM knowledge and Information
		- ‘ … helps increase my knowledge’
		2. Practical care skills
		- ‘ … dietitians … teach us about food … is helpful’
		- ‘ … counselling helps’
		3. Ongoing follow-up care
		- GM review downloads
		- adjusting regimens
	B. Patient-centredness	1. Caring, loving, respectful
		- ‘ … the way they treat the kids … with respect–love’
		2. Inclusiveness
		3. Collaborative decision-making
		- ‘ … they do not take decisions without you’
		4. Responsive
		- ‘I have told them and they have fixed it’
		- ‘ … been able to change the way they are working’
	C. Problem-solving role	1. Resources
		- Grant application assistance
		- Food supplements
		2. Advice
		- ‘ … you will get what you can do’
		- ‘ … try to find ways that help’
	D. Access to group support	1. Not alone
		- ‘ … not only your child … can see other children’
		- ‘We talk amongst each other and try to help one another’
	E. Diabetes education	1. Relieves anxiety/empowering
		- ‘ … was scared but now I’m brave’
		2. Self-efficacy & competence
		- ‘ … can stand the diabetes’
		- ‘I supervise the child’
		3. Able to transfer to child
		- ‘I have taught my child’
		4. Satisfaction with education received
		- ‘I was taught well’
		- ‘ … taught me enough’
Clinic improvements	A. Waiting times	1. More doctors
		- ‘ … add more doctors … there’s a lot of us’
		2. See the same doctor
		- ‘ … different doctors … things are moving slow’
	B. Continuity of care	1. See the same doctor
		- ‘ … the doctors change a lot’
		2. Family consultations
		- ‘ … families as a whole so they can all be taught’
	C. Care at other hospitals/clinics	1. Improve knowledge and skills
		- ‘ … improve the hospitals close to us’
		2. Access to meds/consumables
		- ‘ … transfer … clinics closest to us’
		3. Troubleshooting skills
		4. Communication with clinic
	D. Insulin injections	1. Alternatives
		- ‘ … another option … besides having to inject’
		2. Shorter needles (pharmacy)
		- ‘Order enough’ for children
	E. Other	1. ‘ … assist us in offering discipline to the children’
		2. ‘ … get recipes for the parents’
		3. More intensive dietetics advice