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Phenylketonuria patients' and their parents' knowledge and attitudes to the daily diet - multi-centre study.

ABSTRACT: The aim of the study was to assess both patients' and their parents' knowledge of phenylketonuria (PKU) treatment and compliance with PKU diet.The study included 173 PKU patients aged 10-19 and 110 parents of PKU children who were enrolled in the study on the basis of questionnaire data. The study also included 45 patients aged ≥20.Our study demonstrated that only 45% (n = 74) of PKU patients knew daily Phe intake recommendations, 27% of patients (n = 41) knew the Phe content in a minimum of three out of four researched food products. Patients' knowledge concerning Phe intake (p = 0.0181) and the knowledge of selected food products (p = 0.041819) improved with age. We did not establish such a correlation in the group of PKU children's parents. Approximately 31% of patients and 22% of parents reported helplessness, which increased with the child's age, associated with the necessity to adhere to the diet; 30% of patients reported feeling ashamed of the fact that they could not eat all food products. Regardless of age, children were more likely than parents to report helplessness (p = 0.032005). Among patients, 41.40% declared that they would wish to select products unassisted but their parents did not permit them to do so. The question of whether parents teach children self-reliance in meal preparation was answered affirmatively by 98% of parents and only 81% of children (p = 0.0001).Our data demonstrated that parents' and children's knowledge concerning treatment recommendations and food products does not have a direct impact on attitude to the PKU diet. Limiting children's independence in meal selection, growing helplessness in the face of dietary adherence and shame resulting from the necessity to follow a different diet observed in PKU families are responsible for shaping and perpetuating a consistently negative attitude to the diet. The care of PKU paediatric patients requires consistent, long-term family and individual therapy which may counteract the effects of learned helplessness. In regard to the educational effort, a good parent-child relationship as well as the teaching of behaviours motivating patients to comply with the diet are of great importance.

SUBMITTER: Witalis E

PROVIDER: S-EPMC5559804 | biostudies-other | 2017

REPOSITORIES: biostudies-other

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Project description:BackgroundPeople with dementia are not routinely offered rehabilitation services despite experiencing disability associated with the condition and accumulating evidence for therapies such as exercise, occupational therapy, and cognitive or physical rehabilitation. It is important to understand the needs and preferences of people with dementia regarding rehabilitation services. The aim of this study was to explore thoughts and beliefs about rehabilitation amongst people with dementia and their families.MethodsInterviews with people with dementia and family members regarding their experience of care following diagnosis and their attitudes and beliefs about rehabilitation for dementia. Surveys with older people with cognitive impairment and/or a diagnosis of dementia to determine preferences for services and understanding of rehabilitation programs.ResultsInterviews with 13 participants (n = 6 people living with dementia with mean age 60 and n = 7 care partners) revealed gaps in care post diagnosis. People reported having to seek out services and frequently sought out services which were rehabilitative in nature. Survey data (n = 91 participants, average age 82) showed that most people had heard of rehabilitation (92%) or had experience of rehabilitation (49%) at some point. There was a wide range of services identified as being beneficial. Rehabilitative interventions including case management, exercise and memory strategies were considered desirable.ConclusionsPeople with dementia report having a wide variety of needs. There are gaps following diagnosis where people with dementia report having to seek out their own services. Some interview participants (who tended to be younger) clearly articulated the need for tailored interventions which maximised independence and quality of life. Survey participants, who were on average older, reported that they would participate in individually applicable rehabilitative therapies if they were available.

Project description:BACKGROUND: Nigeria is one of the major African countries in which incidences of polio infection persist in spite of several eradication efforts. The preponderance of paralytic poliomyelitis particularly in the northern part of Nigeria raises the question as to whether parents of children affected with polio know how polio is contracted and spread, whether having a disabled child affects the parents' attitude towards these children, and what they believe about poliomyelitis in view of their socio-cultural and belief system in the sub-region. Zamfara State, in the north-west of Nigeria is one of the endemic areas where resistance to the global campaign on polio eradication was very high. Therefore this study was conducted to investigate the knowledge, attitudes and beliefs of parents/primary caregivers of children affected with paralytic poliomyelitis in Zamfara State. METHODS: This study is a cross-sectional survey in which the multistage probability sampling technique was used to randomly select two local government areas in Zamfara State where consenting parents/primary caregivers of children with paralytic poliomyelitis were purposively selected. The knowledge, attitudes and beliefs of parents were assessed with the aid of a 4-part 52-item structured researcher administered questionnaire and the data obtained were analyzed. RESULTS: Two hundred and seventeen parents/primary caregivers participated in the study. One hundred and forty-two, (65.4%) reported good, 51 (23.8%) reported fair, while 24 (11%) of participants reported poor knowledge of paralytic poliomyelitis. More respondents 120 (55.3%) showed a positive attitude towards children with paralytic poliomyelitis. Younger age (P=0.016) and paid employment (P=0.020) were positively associated with good knowledge of paralytic poliomyelitis. Female gender (P=0.020), higher educational level (P=0.015), being employed (P=0.010) and having from middle to high household income (P=0.016) were positively associated with a positive attitude toward children with paralytic poliomyelitis. Most respondents showed a reasonable belief over the cause of their children's condition rather than the erroneous traditional belief that paralytic poliomyelitis is caused by spirit forces. CONCLUSIONS: It is of great concern that the good knowledge, positive attitude and reasonable belief by parents/primary caregivers about paralytic poliomyelitis observed in this study did not play a prominent role in preventing susceptibility of children in north-west Nigeria to paralytic poliomyelitis. It is imperative that Nigerian policy makers should device more strategic measures toward the prevention of paralytic poliomyelitis in this sub region.

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Phenylketonuria patients' and their parents' knowledge and attitudes to the daily diet - multi-centre study.

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