Qualitative interview study of communication between parents and children about maternal breast cancer

Objective To examine parents'' communication with their children about the diagnosis and initial treatment of breast cancer in the mother. Design Qualitative interview study within a cross-sectional cohort. Setting Two breast cancer treatment centers. Participants 32 women with stage I or stage II breast cancer with 56 school-aged children. Main outcome measures Semistructured interview regarding timing and extent of communication with children about the diagnosis and initial treatment of the mother''s illness, reasons for talking to children or withholding information, and help available and requested from health professionals. Results Women were most likely to begin talking to their children after their diagnosis had been confirmed by biopsy, but a few waited until after surgery or said nothing at all. Family discussion did not necessarily include mention of cancer. There was considerable consistency in the reasons given for either discussing or not discussing the diagnosis. The most common reason for not communicating was to avoid children''s questions, particularly those about death. Although most women had helpful discussion with a physician concerning their illness, few were offered help with talking to their children; many would have liked help, particularly the opportunity for both parents to talk to a health professional with experience in understanding and talking to children. Conclusion Parents diagnosed with cancer or other serious illnesses should be offered help to think about whether, what, and how to tell their children and about what children can understand, especially as they may well be struggling themselves to come to terms with their illness.     

What worries parents when their preschool children are acutely ill,and why: a qualitative study.

OBJECTIVE: To identify and explore parents'' concerns when young children become acutely ill. DESIGN: Qualitative study making use of semi-structured one to one and group interviews with parents of preschool children. SETTING: Disadvantaged inner city community. SUBJECTS: 95 parents of preschool children. RESULTS: Fever, cough, and the possibility of meningitis were parents'' primary concerns when their children became acutely ill. Parents'' concerns reflected lay beliefs, their interpretation of medical knowledge, and their fears that their child might die or be permanently harmed. Parents worried about failing to recognise a serious problem. Concerns were expressed within the context of keenly felt pressure, emphasising parents'' responsibility to protect their child from harm. They were grounded in two linked factors: parents'' sense of personal control when faced with illness in their child and the perceived threat posed by an illness. CONCLUSIONS: Better understanding of parents'' concerns may promote effective communication between health professionals and parents. Modification of parents'' personal control and perceived threat using appropriate information and education that acknowledge and address their concerns may be a means of empowering parents.     

Qualitative interview study of communication between parents and children about maternal breast cancer

ObjectiveTo examine parents'' communication with their children about the diagnosis and initial treatment of breast cancer in the mother.DesignQualitative interview study within cross sectional cohort.SettingTwo breast cancer treatment centres.Participants32 women with stage I or stage II breast cancer with a total of 56 school aged children.ResultsWomen were most likely to begin talking to their children after their diagnosis had been confirmed by biopsy, but a minority waited until after surgery or said nothing at all. Family discussion did not necessarily include mention of cancer. There was considerable consistency in the reasons given for either discussing or not discussing the diagnosis. The most common reason for not communicating was avoidance of children''s questions and particularly those about death. While most mothers experienced helpful discussion with a doctor concerning their illness, few were offered help with talking to children; many would have liked help, particularly the opportunity for both parents to talk to a health professional with experience in understanding and talking to children.ConclusionsParents diagnosed with cancer or other serious illnesses should be offered help to think about whether, what, and how to tell their children and about what children can understand, especially as they may well be struggling themselves to come to terms with their illness.     

The road will be mastered by the walker

Anonymous questioning by the distribution of questionnaires among 1,600 young people (68.9% of them were city dwellers, 31.1% were villagers) was carried out. The questioning covered 1,079 adolescents aged 12-16 years (67.3%), 501 young people aged 16-19 years (31.3%) and 20 respondents aged 19-23 years (1.4%). The analysis of answers to questionnaires indicated that all respondents had the same level of knowledge on the subject, but the information they possessed was not duly analyzed and had no influence on their own behavior. It should be pointed out that 1% of persons aged 12-19 years took drugs by intravenous injection. These data, as well as other materials, gave grounds for the development of a new educational program on the prophylaxis of HIV/AIDS/STD and its introduction in 1997. The program is intended for a school course of 6 years (forms 6-11) and must provide adolescents with reliable and comprehensible information, conductive to the formation of a healthy mode of life.     

Parents' difficulties and information needs in coping with acute illness in preschool children: a qualitative study.

OBJECTIVES: To identify and explore difficulties parents experience with acute illness in young children and the information they seek to help them. DESIGN: Qualitative study using semi-structured one t one and group interviews with parents of preschool children. SETTING: Disadvantaged inner city community. SUBJECTS: 95 parents of preschool children. RESULTS: Parents felt disempowered when dealing with acute illness in their children because of difficulties making sense of the illness. Central to parents'' difficulties were their experiences of inadequate information sharing by their general practitioners and variations in their doctors'' decisions and behaviour. Disparity between parents'' beliefs and expectations about illness and treatment and professionals'' behaviour further frustrated parents'' attempts to understand illness. Parents expressed a need for a range of accessible and specific information to support them through their negotiation of children''s illness. CONCLUSIONS: Communication with parents requires greater recognition of parents'' difficulties. Professionals have considerable potential to empower parents by sharing more information and skills. Such information should be consistent and address parents'' concerns, beliefs, and expressed needs if this potential is to be realised.     

Abstracts

Abstract

This study examines the effects of gender in conjunction with age, pet ownership, and sibling status on children's ideas about domestic animal young (puppies and kittens) and how they are nurtured. A theoretical model accounting for gender differences in the development of nurturance in children is presented. The model argues that children may develop knowledge about nurture from many sources, including animals, and that gender differences are most likely when behavior (versus knowledge) and baby care (versus animal care) are assessed. Ideas about animal young and animal caregiving of their young were individually assessed in structured interviews with 43 preschoolers and 42 second graders. Boys' ideas increased with age, while that of girls did not. Having a younger sibling was associated with more knowledge in boys but not in girls. Children with pets had more ideas about how adult animals cared for their young than did non-pet owners.     

Reviews on sun exposure and artificial light and melanoma

Melanoma is the most common form of cancer among young adults aged 25-29 years and the second most common cancer in those aged 15-29 years. We reviewed all the evidence regarding risk factors for melanoma, looking in particular at childhood exposure to ultraviolet radiation (UV). UV radiation is clearly the predominant environmental and thus potentially modifiable risk factor for melanoma. All activities related to tan-seeking behaviour and history of sunburns were shown to be significantly associated to melanoma. Host factors, such as pigmentary characteristics, and genetic predisposition plays also an important role. UV exposure is not only due to the sun but also to indoor tanning devices that have been shown to lead to an elevated risk of melanoma. The strongest evidence for a link between artificial UV and melanoma is found among individuals who had their first exposure to indoor tanning before the age of 30: they have a 75% increase risk of developing melanoma than individuals who had no exposure to indoor tanning. Prevention is very important, especially for children and young adults, as childhood and adolescence are critical periods in the development of later melanoma. Indoor tanning is a widespread practice in most developed countries, particularly in Northern Europe and the USA. In the recent decades more and more people, especially teenagers and women, are exposed to substantially high radiant exposures of UV through artificial sources and these trends raised a considerable concern. In fact the International Agency for Research on Cancer concluded that the association between skin cancer and exposure to solar radiation and the use of UV-emitting tanning devices are causal. Interesting analyses carried out in Iceland showed that when interventions to discourage sunbed use were introduced the incidence of melanoma among women decreased. All this evidence encouraged many countries to introduce regulations on sunbed use to avoid exposure before the age of 18.     

Assessing the Effectiveness of a Training Program for Interviewing Child Witnesses

Twenty-seven experienced interviewers attended a 10-day training institute designed to provide knowledge and skills for improving investigative interviews with young children. Participants completed pre- and posttraining surveys assessing their knowledge of the scientific evidence regarding memory, suggestibility, and other aspects of children's ability to provide accurate accounts of events during interviews. They also conducted pre- and posttraining interviews with preschool children about 2 previously experienced events. Participants' knowledge about children's abilities and the scientific basis of various interviewing protocols increased significantly after the training. However, training did not have a significant impact on interviewers' questioning styles or the amount of accurate information elicited from the children. Results indicate that successfully translating knowledge into practice requires multiple opportunities for skill practice and feedback.     

Promoting children's home safety.

Home accidents are the main cause of death and morbidity in early childhood. Working-class children are at greatest risk. A study in an inner city area of the effects of a national television campaign about child accident prevention and of a locally designed health education initiative showed that 55% of families with young children in the study area did not watch any of the television programmes. Only 9% of a group specially encouraged to watch the programmes took any action to make their homes safer. In a comparable group who also received a home visit at which specific advice was given 60% took action to make their homes safer. The families studied were well aware before the television campaign of the importance and preventability of children''s accidents. The problems disadvantaged families face are therefore not ones of ignorance or apathy about hazards but practical difficulties in converting their concern into action. Administrative arrangements must be developed for providing health workers--especially health visitors--with detailed local information to pass on to parents.     

Preventing iron deficiency in preschool children by implementing an educational and screening programme in an inner city practice.

OBJECTIVE--To assess the feasibility and acceptability of screening young children for iron deficiency in a deprived inner city practice and to assess the effects of a programme of dietary education. DESIGN--Prospective study of children in general practice, comparison with historical controls. SETTING--A deprived inner city practice. PATIENTS--127 Children aged 13-24 months. Findings were compared with those in 110 children of the same age studied previously. INTERVENTIONS--All mothers received dietary education antenatally and in the first year after giving birth. Screening for iron deficiency (defined as mean cell volume less than 75 fl and haemoglobin concentration less than 105 g/l) and haemoglobinopathy (when appropriate) was offered for all children attending for immunisation against measles, mumps, and rubella over 12 months; capillary blood samples were taken after immunisation. MAIN OUTCOME MEASURES--Uptake of the screening programme expressed as the percentage of all children eligible for immunisation who were screened, and the effectiveness of the dietary education as shown by the prevalence of iron deficiency in the two groups. RESULTS--Altogether, 122 of the 127 (96%) children who attended for immunisation had their haemoglobin concentration and mean cell volume measured; 90% of all children aged 13-24 months in the practice were screened. Dietary education, clinical procedures, and counselling were incorporated successfully into the clinic''s work. Ten children (8%) were iron deficient, all of whom responded to iron supplements, and eight had a haemoglobinopathy trait. In the previous study 110 children (70%) had been screened and 28 children (25%) had been iron deficient. The two groups were similar in terms of sex, social class, and ethnic group. CONCLUSIONS--Screening young children for iron deficiency, sickle cell disease, and thalassaemia when they attended for immunisation was acceptable and successful in a socially deprived inner city practice. Dietary education may have accounted for some of the reduction in the prevalence of iron deficiency that occurred over the two years.     

The GAMY Project: young people’s attitudes to genetics in the South Wales valleys

This paper explores young people’s attitudes to genetics. It describes a qualitative study involving a group of teenagers in a deprived South Wales valley town over a period of 18 months. The GAMY (Genetics and Merthyr Youth) Project involved a series of interactions with participants, including 2 interviews, 4 group days and 4 genetics tasks through which these young people learned about, and then reflected upon, issues relating to genetics and health. We have gathered data about the informed attitudes of teenagers to genetics based on deliberative learning and reflection over a long period of time, and as such this paper provides useful insights into the underlying values that are guiding young people’s views and the factors that are shaping their responses to new genetic technologies. Attitudes to genetics are complex and not easily generalisable. There were low levels of familiarity with, and knowledge of, genetics from the outset. Most young people did not have pre-existing attitudes towards genetics and had given little or no thought to the topic before the project began. However, levels of awareness and general genetic literacy increased as the project progressed. This study suggests that over time young people can develop an awareness of genetics that makes sense to them; they demonstrate that they can think creatively about genetics, and they are able to engage in considering genetic and other risk factors when thinking about health and disease.     

Mixed feelings of children and adolescents with unilateral congenital below elbow deficiency: an online focus group study

The existing literature is inconsistent about the psychosocial functioning of children and adolescents with Unilateral Congenital Below Elbow Deficiency (UCBED). The objective of this qualitative study was to explore the psychosocial functioning of children and adolescents with UCBED in terms of their feelings about the deficiency and what helps them to cope with those feelings. Additionally, the perspectives of prosthesis wearers and non-wearers were compared, as were the perspectives of children, adolescents, parents and health professionals. Online focus group interviews were carried out with 42 children and adolescents (aged 8-12, 13-16 and 17-20), 16 parents and 19 health professionals. Questions were asked about psychosocial functioning, activities, participation, prosthetic use or non-use, and rehabilitation care. This study concerned remarks about psychosocial functioning. Children and adolescents with UCBED had mixed feelings about their deficiency. Both negative and positive feelings were often felt simultaneously and mainly depended on the way people in the children's environment reacted to the deficiency. People staring affected the children negatively, while support from others helped them to cope with the deficiency. Wearing a prosthesis and peer-to-peer contact were also helpful. Non-wearers tended to be more resilient than prosthesis wearers. Wearers wore their prosthesis for cosmetic reasons and to prevent them from negative reactions from the environment. We recommend that rehabilitation teams make parents aware of their great influence on the psychosocial functioning of their child with UCBED, to adjust or extend the currently available psychosocial help, and to encourage peer-to-peer contact.     

Reproductive health knowledge and use of services among young adults in Dakar, Senegal

A study was conducted in Dakar, Senegal, to measure reproductive health knowledge and contraceptive use among young adults, and access to family planning services. A household survey was conducted with 1973 single and married women aged 15-24 and 936 single men aged 15-19. Two focus groups and a simulated client study were also conducted. The survey and focus groups noted gaps in knowledge of family planning methods and reproductive health. There were misconceptions about methods and only one-third of men and women aged 15-19 correctly identified the time of the menstrual cycle when a women is most likely to get pregnant. Contraceptive use at time of first premarital sexual experience was less than 30%. The simulated client study noted many barriers to services. 'Clients' felt uncomfortable in the clinics and felt that providers were reluctant to take care of them. None of the 'clients' who requested contraception received it.     

Young people,alcohol, and designer drinks: quantitative and qualitative study.

OBJECTIVE: To examine the appeal of "designer drinks" to young people. DESIGN: Qualitative and quantitative research comprising group discussions and questionnaire led interviews with young people accompanied by a self completion questionnaire. SETTINGS: Argyll and Clyde Health Board area, west Scotland. SUBJECTS: Eight groups aged 12-17 years; 824 aged 12-17 recruited by multistage cluster probability sample from the community health index. RESULTS: Young people were familiar with designer drinks, especially MD 20/20 and leading brands of strong white cider. Attitudes towards these drinks varied quite distinctly with age, clearly reflecting their attitudes towards and motivations for drinking in general. The brand imagery of designer drinks-in contrast with that of more mainstream drinks-matched many 14 and 15 year olds'' perceptions and expectations of drinking. Popularity of designer drinks peaked between the ages of 13 and 16 while more conventional drinks showed a consistent increase in popularity with age. Consumption of designer drinks tended to be in less controlled circumstances and was associated with heavier alcohol intake and greater drunkenness. CONCLUSIONS: Designer drinks are a cause for concern. They appeal to young people, often more so than conventional drinks, and are particularly attractive to 14-16 year olds. Consumption of designer drinks is also associated with drinking in less controlled environments, heavier drinking, and greater drunkenness. There is a need for policy debate to assess the desirability of these drinks and the extent to which further controls on their marketing are required.     

Assessing midwives' breastfeeding knowledge: Properties of the Newborn Feeding Ability questionnaire and Breastfeeding Initiation Practices scale

Background

Appropriate feeding practices are of fundamental importance for the survival, growth, development and health of infants and young children. The aim of the present study was to collect baseline information on current infant and young child feeding practices, attitudes and knowledge in Mazabuka, Zambia, using a qualitative approach.

Methods

The study was conducted in Mazabuka, 130 km south of Lusaka in Zambia in January and February in 2005. Nine focus group discussions with mothers and a total of 18 in-depth interviews with fathers, grandmothers, health staff and traditional birth attendants were performed in both rural and urban areas.

Results

Breastfeeding was reported to be universal, the use of pre-lacteal feeds appeared to be low, colostrum was rarely discarded, and attitudes to and knowledge about exclusive breastfeeding were generally good. However, few practised exclusive breastfeeding. The barriers revealed were: (1) the perception of insufficient milk, (2) the fear of dying or becoming too sick to be able to breastfeed, (3) convention, (4) the perception of 'bad milk' and (5) lack of knowledge on the subject. The health staff and traditional birth attendants were the most important actors in transmitting knowledge about infant feeding to the mothers. Both categories appeared to have updated knowledge on child health and were well respected in the society. Fathers and grandmothers tended to be less knowledgeable on novel subjects such as exclusive breastfeeding and often showed a negative attitude towards it. At the same time they had considerable authority over mothers and children and infant feeding decisions. The rural population was in general less educated and more prone to conventional non-exclusive feeding practices.

Conclusion

The message that exclusive breastfeeding (EBF) is beneficial for child health had reached the health workers and was taught to mothers. However, conventions and expectations from family members in this Zambian community were important barriers in preventing the message of EBF from being translated into practice. The deep-rooted beliefs that prohibit EBF need to be addressed in projects and campaigns promoting EBF.     

The educating and informing of the population on HIV/AIDS problems in the Republic of Byelarus

Data on the spread of knowledge and information among the population of the Republic of Belarus, mainly young people aged 14-20 years as the most susceptible group, are presented. Sociological questioning carried out among students of institutions of higher education indicated that 91% of them did not admit the possibility of getting HIV infection; the majority of students of technical and high schools denied the role of casual sexual relations in the spread of HIV infection. The questioning revealed that the main source of information was television for 83.5% of the questioned students, newspapers and magazines for 82.9% and radio for 35%. The sociological study made it possible to lay special emphasis on educational institutions in the work on the information and education of the population. Programs, recommendations and other information materials on the problem of the prophylaxis of HIV/AIDS were developed. Information is provided in educational institutions during classes and non-class work. Institutions of culture also play their due role in providing better information to young people. The Centre issued 26 video reels, 2 films and 3 audio reels.     

Cigarette advertising and children's smoking: why Reg was withdrawn.

OBJECTIVE--To examine the appeal of the Embassy Regal "Reg" campaign to young people. DESIGN--Three quantitative surveys and one piece of qualitative research: (a) self completion questionnaire administered in classrooms, (b) questionnaire led interviews with children, (c) questionnaire led interviews with adults, and (d) group discussions with children and adults. SETTINGS--(a) Secondary and middle schools in England; (b) north of England, Scotland, and Wales; (c) north of England, Scotland, and Wales; and (d) Glasgow. SUBJECTS--(a) 5451 schoolchildren aged 11-15 recruited by stratified random sampling; (b) 437 children aged 5-10 recruited by quota sampling; (c) 814 adults aged 15-65 recruited by quota sampling; and (d) 12 groups of children aged 10-15, three groups of adults aged 18-24, and three groups of adults aged 35-55. RESULTS--Children were familiar with cigarette advertising and in particular the Reg campaign. Although younger children struggled to understand the creative content of the adverts, older and smoking children could understand and appreciate the humour. They considered Reg to be amusing and could relate to the type of joke used in the advert. In addition Reg''s flippant attitude towards serious issues appealed to the children. While adults aged 18-24 understood the campaign they did not identify with it, and 35-55 year olds (the campaign''s supposed target) were unappreciative of the campaign. CONCLUSIONS--The Reg campaign was getting through to children more effectively than it was to adults and held most appeal for teenagers, particularly 14-15 year old smokers. It clearly contravened the code governing tobacco advertising, which states that advertising must not appeal to children more than it does to adults, and it may have had a direct impact on teenage smoking. In view of these findings the Advertising Standards Authority''s decision to withdraw the Reg campaign seems appropriate.     

Patients’ attitudes to the summary care record and HealthSpace: qualitative study

Objective To document the views of patients and the public towards the summary care record (SCR, a centrally stored medical record drawn from the general practice record) and HealthSpace (a personal health organiser accessible through the internet from which people can view their SCR), with a particular focus on those with low health literacy, potentially stigmatising conditions, or difficulties accessing health care.Design 103 semistructured individual interviews and seven focus groups.Setting Three early adopter primary care trusts in England where the SCR and HealthSpace are being piloted. All were in areas of relative socioeconomic deprivation.Participants Individual participants were recruited from general practice surgeries, walk-in centres, out of hours centres, and accident and emergency departments. Participants in focus groups were recruited through voluntary sector organisations; they comprised advocates of vulnerable groups and advocates of people who speak limited English; people with HIV; users of mental health services; young adults; elderly people; and participants of a drug rehabilitation programme.Methods Participants were asked if they had received information about the SCR and HealthSpace and about their views on shared electronic records in different circumstances.Results Most people were not aware of the SCR or HealthSpace and did not recall receiving information about it. They saw both benefits and drawbacks to having an SCR and described a process of weighing the former against the latter when making their personal choice. Key factors influencing this choice included the nature of any illness (especially whether it was likely to lead to emergency care needs); past and present experience of healthcare and government surveillance; the person’s level of engagement and health literacy; and their trust and confidence in the primary healthcare team and the wider NHS. Overall, people with stigmatising illness were more positive about the SCR than people who claimed to speak for “vulnerable groups.” Misconceptions about the SCR were common, especially confusion about what data it contained and who would have access to it. Most people were not interested in recording their medical data or accessing their SCR via HealthSpace, but some saw the potential for this new technology to support self management and lay care for those with chronic illness.Conclusion Despite an extensive information programme in early adopter sites, the public remains unclear about current policy on shared electronic records, though most people view these as a positive development. The “implied consent” model for creating and accessing a person’s SCR should be revisited, perhaps in favour of “consent to view” at the point of access.     

Induced abortion in Sri Lanka: who goes to providers for pregnancy termination?

The sociodemographic characteristics of abortion seekers and the reasons they give for procuring termination were studied in 356 clients selected from two abortion clinics in the city of Colombo. Nearly 80% were Buddhists and about 10% were Christians. Almost all had some formal education but only 20% were employed outside the home. Over 95% were currently married and at the peak of their childbearing age. More than one-half were aged 30 years or over, while adolescents only constituted about 3%. Fourteen per cent were nulliparous and about two-thirds had one or two living children at the time of obtaining the abortion. A significantly high proportion also had a very young child. In total, the 356 women had had 1130 pregnancies, and the mean rate of abortion was 42 per 100 pregnancies. Over one-quarter had had more than one abortion and about 10% had had three or more. Almost all abortions were performed within the first trimester with a mean gestation period of 6 weeks. About one-third of the clients were using some method of contraception at the time they became pregnant. The most common reasons cited for the present abortion were 'pregnancy too soon after previous delivery', 'no more children desired' or 'curtailment of opportunity for foreign employment'. Unmarried women constitute a special group of abortion seekers who have different needs and behave differently from married women. Their needs are not currently being met by reproductive health programmes in Sri Lanka, and it is important that they should be given special attention in the future. An interesting finding is that a significant minority of the abortion seekers answered negatively to the question regarding providing medical facilities for abortions without difficulty. This underscores the ambivalence many people have to abortion.     

Death from cancer at home: the carers' perspective.

OBJECTIVES--To collect information from principal carers of people who had died at home with cancer; to identify areas of support which need improvement. DESIGN--Semistructured interviews with carers two to four months after the death. SETTING--38 general practices in the Exeter, Torbay, and Plymouth health districts. SUBJECTS--207 carers. MAIN OUTCOME MEASURES--Services received by carers and quality of support. RESULTS--161 of 207 patients were aged 60 or over. 88 carers were aged under 60, 110 were 60-80, and 9 were > 80. Carers had difficulty in getting urgent professional help in only 15 out of 177 cases. 124 carers were not given advice on financial help and 174 were not told of support available from local charities. Although pain was well controlled, 25% of patients had no relief of other symptoms. Overall, 150 carers considered the support excellent, 45 good, 8 moderate, 2 poor, and 2 had no comment. CONCLUSIONS--Although care has improved in recent years, health professionals need to give carers more advice about help available outside health services. Domestic help was often needed earlier. Better appreciation of carers'' problems is needed.