Medios de información y comunicación de Petrobras con la comunidad

7.2.1 Socio-economic status

The 40 patients are from 24 families^∗. Five families each have three children with PKU, ten have two children with PKU, and nine have one child with PKU^♣. All the children live with both of their parents, except one child; she lives with her father and step mother. Five families live in extended households, the remainder nuclear. Eighty percent of the families live in urban areas, 15% in peri-urban areas, and 5% in rural areas. Fifteen families (37.5%) live in Riyadh, other families live in cities or towns that are a 3 to 14 hour drive to Riyadh (45 min – 2 hr flight).

There is a wide range in parents’ education and occupations, although most mothers are homemakers. Table 6 shows parents’ ages, education level, and occupation. The monthly spending of the families varies, most families (66.7%) spend less than 5000 Saudi Riyals per month (1 Pound Sterling = 6 Saudi Riyals SR). The average

spending in Saudi Arabia is SR 4700 (Saudi Central Department of Statistics &

Information, 2007). Table 7 and Table 8 give details of the number of children born to mothers, the number of children still alive, birth order of child with PKU, and

statistics of household inhabitants.

∗ When the information in the analysis is related to the parents it is shown in the tables as a total of 24, when the information is related to the patients, the total is 40.

♣Four children not included in the study: two declined, and two were not patients at KFSH&RC, as explained in the research group section.

Table 6: Age, education level, and occupation of the participating parents (N=24).

Table 7: Number of children born to mothers and birth order of child with PKU.

Frequency (%)

Table 8: Descriptive statistics for number of children born to the mothers, number of children with PKU in the families, and household inhabitants (N=24).

Statistics

The fathers are the main food buyers (15/24). The food budget for half of the families (12/24) in this study is within the average food expenditure for all Saudi families, which is 447 Saudi Riyals (SR) per week (Saudi Central Department of Statistics &

Information, 2007). Ten families spend much more on food than the national average.

This high spending is due to ordering low protein products from abroad, as they are not available in the Saudi market.

7.2.2 Diet and formula

7.2.2.1 Food and formula preparation

The primary carer for all patients is the mother, except for the one child whose parents are divorced; the domestic helper is the primary care giver. The secondary carer is mostly the sister when available, the father, or a domestic helper.

The patient’s meals are prepared separately from the family meals in most families (21/24), only three families cook their own food to be suitable for their child with PKU. Meals are usually prepared by the mothers, except for three families where the domestic helper prepares the meals. Formula is mainly prepared by the mothers as well (31/40); only two children, who are siblings, are given a chance to make their formula with their mother. Most mothers prepare the formula just before the child needs to drink it (18/40), or prepare the prescribed amount for the whole day and leave it in the fridge for the child to drink from (17/40). Most of the mothers need less than 5 minutes to prepare the formula. Some of the flavours that the mothers add to

the formula to improve its taste are salt, instant coffee, orange juice, honey, and mostly sugar.

7.2.2.2 Formula intake

Most of the children drink their formula 2 to 3 times a day (19/40). Others drink their formula 4 to 5 times a day or whenever hungry (12/40). The remaining 9 only drink their formula occasionally or never (Table 9). Drinking the formula is not easy for all children, 16 children have difficulty drinking their formula. The mothers believe the smell and taste of the formula are the main reasons of this difficulty. All causes of difficulty and the frequency in which they are mentioned by the mothers are listed in Table 9.

Table 9: Adherence to formula intake and the causes of difficulty in drinking the formula.

Frequency

Drink formula Always 23

Usually 8

Occasionally 7

Never 2

Total 40

Difficulty causes Smell of formula 9

Taste of formula 8

Fed up with the formula 3

Consistency of formula 2

Will not drink formula when sick 1

7.2.2.3 Diet adherence

Only three of the mothers felt that complying with the PKU diet is easy, others felt it was difficult or even very difficult (Table 10). The mothers face many barriers to adhering to the diet; children being unattended around food and children’s insistence on eating banned foods are the two main barriers. Table 10 lists all the barriers faced by the mothers. Only two mothers felt that they did not have any barriers to comply with the diet.

Table 10: Difficulty of adhering to the PKU diet; opinions of the mothers (N=24), and the barriers to adhering to the PKU diet as recognized by the mothers (N=24).

Diet adhering Frequency

Child unattended around food 13 (54.2%)

Child’s insistence on eating banned food 11 (45.8%)

Social visits 9 (37.5%)

School teachers or pupils 8 (33.3%)

Other children or friends of child 8 (33.3%)

Family members: siblings, grandparents, aunts, or uncles 7 (29.2%)

Limited dietary choices 7 (29.2%)

Refusal to eat what’s offered 1 (4.2%)

Has a big appetite 1 (4.2%)

Limited knowledge of diet 0 (0%)

7.2.3 Education and social life 7.2.3.1 School attendance

Seven of the children (17.5%) are under school age, and 6 (15%) do not go to school - due to unavailability of specialist schools to cater for their learning disabilities in their areas. Twenty seven of the children (67.5%) go to school. More than half of the children who go to school (16/27) are thought to need special education by their mothers. Most of them get some type of special education or special classes, although not always as appropriate as the mothers wish (Table 11). The schools the children attend are regular schools, regular schools with special education classes, or special education schools. They are a mix of private and public schools (Table12).

Table 11: School attendance, perceived need for special education, and provided special education.

Table12: Types of schools the patients attend.

School Type Frequency (%)

Public school (regular) 6 (22.2%)

Public school (has special education classes) 5 (18.5%)

Private school (regular) 7 (25.9%)

Private school (has special education classes) 3 (11.1%)

Special education school 6 (22.2%)

Total 27 (100%)

7.2.3.2 Social activities

Most of the families go out at least once a week accompanied by their children with PKU (Table 13). Mainly they go out for family visits, but a large number take their children out for recreational outings and shopping as well (Table 13). One mother rarely goes out; she finds it very difficult to deal with her child when out, she stays home with him and they go out for their hospital appointments only. Nearly half of the families face difficulties or limitations when going out with their children. The main limitations they endure being the diet and difficulty in dealing with the child in public (Table 13).

Table 13: Frequency of going out as a family (N=24) with the child/children with PKU, places that families go to, and the limitations or difficulties that they face when going out due to the child's condition.

Go out with child Frequency

Daily 1

Weekly 18

Monthly 4

Rarely 1

Total 24

Places to go to accompanied by child

Family visits 23

General anxiety (worried about child) 4

Embarrassment 2

Disability of child 2

Formula 1

Influence of others 1

Child’s condition 0

Other limit: child becomes ill after outing 1

7.2.4 Health care practices

Most of the patients visit KFSH&RC twice a year, but the frequency of visits varies and ranges up to 12 visits a year (Table 14). This usually depends on the health status and age of the patient. Ninety percent of the patients visit other facilities for general health care, such as dental care and intercurrent illnesses. Table 14 lists the frequency of these visits. There is a difference in the frequency of testing phenylalanine blood level between patients, although many of them will have a blood test only when they visit KFSH&RC every six months (Table 14). Most of the mothers perceived that their child’s health is excellent or good in general, only 4 children are perceived to have fair health (Table 14).

Five of the patients have other health problems in addition to PKU (two have glucose-6-phosphate dehydrogenase deficiency, one has insulin dependent diabetes, one has myoclonic encephalopathy, and one has a ventricular septal defect). All of these conditions are managed with PKU and do not have an effect on child development except in the case of one patient who has myoclonic encephalopathy, which impairs development. Therefore he was excluded from the analyses involving development and assessments. Data from his mother’s questionnaire was kept in this analysis because it covered her knowledge, concerns, and care for her child in relation to PKU.

Table 14: Frequency of healthcare visits to KFSH&RC, visits to other facilities, and blood Phe testing, and mothers' perceptions of their children's health.

Frequency (%)

Many of the mothers perceived their knowledge of PKU to be good or excellent (17/24), but there were some who felt they do not understand the condition well enough (7/24). More mothers though (21/24) were confident in their knowledge of the dietary requirements of PKU. Nearly all the mothers understood the importance of their children’s compliance to the diet and formula intake; only one mother felt that following the diet is not important to her child’s health and another mother felt that both the formula and diet are somewhat important but not fundamental to her child’s health. All the mothers knew the basics of the dietary restrictions; that is fruits and vegetables are allowed, while meats and dairy products are not allowed. Two of the mothers thought that lentils are allowed in the diet when they are not, due to their high protein content, and one mother did not know if they were allowed or not. Similarly

two of the mothers thought that diet drinks were allowed and didn’t know that they had phenylalanine in them (in the sweetener, aspartame), and two of the mothers didn’t know if they are allowed or not (Table 15). When the mothers need information regarding the PKU diet many call the dietitian to ask (15/24), some of the mothers (8/24) would look for the information in the written material that they have and some (7/24) would wait till their next appointment to ask the dietitian. Only one mother said she would look for dietary information on the internet.

Table 15: Mothers' knowledge about some food choices for their children.

Is it all right for a child with PKU to eat

The mothers' perceptions of what the dietitian would recommend if their children had high blood Phe levels were mostly correct. They were aware that the child needs to drink all the prescribed formula, reduce dietary protein intake, and in some cases the dietitian might increase the formula intake to cover the child’s needs when some food choices are reduced (Table 16). Most of the mothers, but not all, knew that a

prolonged elevated blood Phe level would cause permanent learning disability for their children. Some understood that elevated levels cause hyperactivity and only a few believed that high levels would cause irritability. Table 17 lists the risks of prolonged high blood Phe levels as perceived by the mothers. Most of the mothers believed that the PKU diet is to be followed for life, as recommended by the

KFSH&RC specialists. Still, some believed that it is only needed until their children grow up or are cured from this disorder (Table 18).

Table 16: Mothers' perceptions of what the dietitian may recommend if blood Phe level was high.

If high Phe level

(correct answer) Answered correctly (%)

Reduce the formula (no) 24 (100%)

Increase dietary protein intake (no) 24 (100%)

Reduce dietary protein intake (yes) 22 (91.7%)

May increase the formula (yes) 6 (25%)

Ask if ill (yes) 1 (4.2%)

Ask about the diet (yes) 1 (4.2%)

Table 17: Mothers' knowledge of the risks of prolonged high blood Phe level.

Risk of prolonged high Phe level in blood

(correct answer) Answered correctly (%)

Permanent learning disability (yes) 19 (79.2%)

Hyperactivity (yes) 7 (29.2%)

Irritability (yes) 3 (12.5%)

Illness (no) 21 (87.5%)

Paralysis (no) 23 (95.8%)

No effect (no) 24 (100%)

Other risks perceived by the mothers Frequency

- Low/decreased concentration 5

- Aggressiveness/anger 4

Table 18: Mothers' beliefs of the length of time needed to follow the PKU diet.

Diet Period Frequency (%)

The families wanted to learn more about many issues relating to PKU. Learning more about diet choices and what the future holds for their children were highest on their lists. They wanted to understand the effects of PKU on growth, puberty, marriage, and pregnancy. They wanted more information about food choices and recipes to improve their children’s limited diet. Some families just wanted to understand the condition and its effects on brain and development. They were interested to learn about other patients similar to their children; how they are doing, how their families are coping, and how they are at school. A few families also were interested in learning about new advances in research in terms of a cure or a medicine for PKU that would improve dietary choices or replace the formula.

Box 4 lists some of what the families are interested in learning about. When asked how they would like to have this information provided to them most preferred the material to be given to them on videos, pamphlets, or CDs to take home; to watch, read, or listen to in their own time and keep as a reference. Many families were also interested in having a designated time that they can easily reach their health care provider by phone to ask any question they might have. All the ways of information provision according to preference of mothers are listed in Table 19. The main sources of information for families currently are the doctors and the dietitians (Table 19).

Box 4: Topics the families are interested to learn more about.

Future

• Do his food choices now affect him negatively in the future?

• How can I prevent them from getting worse, in their brain functions?

• How are other patients doing mentally, when they grow up?

• How to deal with them at puberty?

• Her future when she grows up.

• Her growth and puberty.

• What to do in the future. What is the future like for them?

• Pregnancy issues.

• Understand future of PKU.

• When they grow up and get married how would PKU affect them in the future?

• Would like to understand if there would be improvements in the future.

• What will happen when she grows up?

Diet

• Diet.

• Understand more about the formula and how it benefits my son.

• How to improve the diet choices from the allowed food, to introduce new recipes.

• More information about the diet in the future.

• The diet is very limited, how to improve it?

• Know about more options of food.

• More information about allowed foods.

• Something to help with the diet.

• How to count protein grams in food items?

• What kinds of food can we give them more of?

Condition

• How does it affect their brains?

• How are other children here doing?

• I need to understand her condition.

• Know more about dealing with learning disability.

• More information about this disorder.

• Is the stress level of the child affected by their phenylalanine blood level?

• I would like to meet and know about older children similar to my daughter, what happened to them, how are the families coping, how are the schools?

New advances in PKU

• Information about new improvements.

• Would there be medications instead of the formula and diet?

• I would like to know about any advances.

Table 19: Mothers' preferred ways of information provision and the information source for families regarding PKU.

Form of information provision Frequency (%)

Video tapes/ DVDs 24 (100%)

Written material (e.g. pamphlets) 21 (87.5%)

Designated time to call HCP to answer specific questions 21 (87.5%)

Audio cassettes / CDs 18 (75%)

Informal sessions with healthcare providers (HCP) during clinic visits 17 (70.8%)

Group lectures 16 (66.7%)

Email 2 (8.3%)

Email with doctors & professionals out of Saudi Arabia 1 (4.2%)

Website regarding PKU in Arabic 1 (4.2%)

PKU information source

Doctor 22 (91.7%)

Dietitian 21 (87.5%)

Internet 7 (29.2%)

Another person with same diagnosis 5 (20.8%)

Books 4 (16.7%)

Nurse 2 (8.3%)

7.2.6 Personal concerns

The mothers had many concerns for their children regarding PKU (Box 5). Most of the mothers were concerned about the diet; its difficulty to comply with, limitations of choices, and the inability to control their children around food. The unknown future was a big concern for the mothers as well; they worry about their children’s

development, ability to complete school and have proper education, puberty issues, and the ability to lead a normal adult life. Some mothers were concerned about the increased weight of their children due to the continued intake of Phenex-I after 2 years of age. Phenex-I is a Ross product formula that is designed for infants and toddlers with PKU. Until recently (2010) KFSH&RC had only Phenex-I available for all PKU patients, providing older children with higher energy content than their needs and causing an overweight problem for them. This issue was resolved when the administration at KFSH&RC finally listened to the pleas of the dietitians and the families and started importing Phenex-II.

The mothers feel isolated and alone in dealing with PKU, not all have family support when needed. Nearly all felt that caring for a child with PKU makes them depressed or stressed. Many felt that it affects their own health (Table 20). Some mothers think that PKU is not understood clearly by their family and friends (Table 21), most of

them would like their families to know more about PKU. All the mothers except one welcomed the idea of having a family support group for PKU.

Box 5: Concerns of the mothers for their children regarding PKU.

• Difficulty with diet o Diet compliance

o Control of Phe blood level

o Want special schools that understand metabolic disorders to control the children’s eating and prevent eating food from friends

o To protect her child the mother avoids social gatherings

• The future

o Brain function o Education o Puberty

o Marriage and having children

• Weight increase due to Phenex-1 use

• General worry, worry about health and condition

• Worry about child’s disability

• Worry about taking care of child properly

• Feel sad for child

• Formula difficulties

Table 20: Wellbeing and support for the mothers, their answers to some quality of life questions.

Wellbeing and support questions Yes

Frequency (%) Do you think caring for a child with PKU affects your

health? 10 (41.7%)

Do you think caring for a child with PKU makes you sad,

depressed or stressed? 21 (87.5%)

Do you have a family member(s) available to help you

when you need help? 17 (70.8%)

Would you want a family member(s) to know more about

your child’s illness? 19 (79.2%)

Would you be interested in joining a family support group? 23 (95.8%)

Table 21: Understanding of PKU by family and friends.

Rate the degree to which your child’s condition is

understood by

Frequency (%) Does not apply

to me Misunderstood Understood Completely understood

Your spouse 0 (0%) 1 (4.2%) 6 (25.0%) 17 (70.8%)

Other children 1 (4.2%) 0 (0%) 9 (37.5%) 14 (58.3%)

Family members 0 (0%) 5 (20.8%) 15 (62.5%) 4 (16.7%)

Friends 10 (41.7%) 2 (8.3%) 11 (45.8%) 1 (4.2%)

7.2.7 Suggestions and requests for service improvement

All the mothers had some suggestions and requests on ways to improve health care and services for their children (Box 6). The two key requests that most mothers asked for were to reduce the waiting time at the clinic and to provide some low protein food products to improve diet choices. The families’ concerns, need for information, suggestions, and requests all echo the findings from Phase 1 of this study.

All the mothers had some suggestions and requests on ways to improve health care and services for their children (Box 6). The two key requests that most mothers asked for were to reduce the waiting time at the clinic and to provide some low protein food products to improve diet choices. The families’ concerns, need for information, suggestions, and requests all echo the findings from Phase 1 of this study.

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