Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences

ObjectiveTo understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services.MethodsFive databases were systematically searched for qualitative articles examining parents’ views and experiences of their child’s healthcare transition. Papers were quality assessed and thematically synthesised.Results: Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child’s progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child’s readiness, wellness, competence and long-term condition impacted on the child’ progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child’s growing independence.ConclusionParents can be key facilitators of their child’s healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers.Practice implicationsInterventions are needed which address the transitional care needs of parents as well as young people.     

Development of a preliminary questionnaire to assess parental response to children's food allergies.

BACKGROUND: Food allergy affects up to 8% of children. Unintentional exposure may result in minor to potentially fatal episodes. Management of allergies depends on strict allergen avoidance and emergency preparedness. The demands of allergy management and concerns for the child's safety may place parents at risk of developing emotional distress or difficulties in coping. OBJECTIVE: To develop a brief condition-specific measure to evaluate parental adjustment to and coping with children's food allergy. METHODS: A total of 221 parents of children 18 year or younger with food allergy were recruited from a private allergy practice and local food allergy support groups. Parents completed an 18-item questionnaire, the Food Allergy Parent Questionnaire (FAPQ), that assessed parental coping with a child's food allergy and questions related to their child's food allergy diagnosis and course. RESULTS: Factor analysis of the items on the FAPQ suggested 4 factors that accounted for 53.6% of the variance: parental anxiety/distress, psychosocial impact of allergies, parental coping/competence, and family support. Medical variables (greater number of food allergies, positive history of anaphylaxis) were associated with higher scores on the anxiety/distress and psychosocial impact subscales. Internal consistency was good for the anxiety/distress and psychosocial impact subscales (Cronbach alpha = .80 and .77, respectively) but lower for the parental coping/competence and family support subscales (alpha = .57 and .32, respectively). CONCLUSIONS: Although further psychometric data for the FAPQ is needed, preliminary findings suggest that the measure may be useful in screening for parental anxiety, perceived impact of food allergies, level of family support, and coping skills.     

Maternal trait anxiety and diabetes control in adolescents with type 1 diabetes

OBJECTIVE: To examine the relationship of maternal trait anxiety with diabetes regulation among adolescents with type 1 diabetes. METHODS: Adolescents and their mothers completed surveys assessing trait anxiety, maternal involvement in diabetes care, adolescent management skills, autonomous motivations, mood state, and absenteeism due to diabetes. HbA1c readings, used to assess metabolic control, were obtained from medical records. RESULTS: Trait-anxious mothers reported taking more responsibility for diabetes management tasks and perceived their adolescents as having poorer management skills. Adolescents with high-anxious mothers reported stronger beliefs that their mothers had high control over their diabetes and their parents were over-protective. For younger adolescents, maternal trait anxiety was associated with higher HbA1c levels and greater absenteeism. For older adolescents, maternal trait anxiety was associated with lower autonomous motivations for diabetes care and lower positive affect. CONCLUSIONS: Interventions for adolescents with diabetes may benefit from addressing these maternal anxiety dynamics in ways that improve diabetes control.     

Parents' information needs about the treatment of their chronically ill child: a qualitative study

Effective information provision is a prerequisite for partnership between child patients, their parents and health professionals. OBJECTIVES: To explore the complexity of parents' information needs and how current information provision is evaluated. METHODS: Qualitative methodology using semi-structured interviews with 27 parents of 20 families with a chronically ill child, recruited at the paediatric department of a British district general hospital. RESULTS: The need for information varied greatly between individuals and over time, and commonly involved diagnosis, management plan and prognosis. However, most parents in this study experienced professional communication and information provision to be inadequate. Information provision appeared to be related to the diagnosis, the level of secondary care involvement and the extent to which parents were required to take responsibility for daily management of the child's condition. Parents' complex and shifting evaluations and responses point to the double-edged nature of information. Some parents actively sought out information, but resisting information, for fear of its potentially negative impact, was also noted to be a coping strategy. CONCLUSION: Parents of chronically ill children presented with a great variety of information needs, which was not always appreciated by healthcare professionals. PRACTICE IMPLICATIONS: This study highlights the need for good communication based on professional awareness of how parents understand and experience their child's illness, as well as the importance of sensitively individualising information provision to parents' needs so as to address their requirements but not to unnecessarily increase their anxiety or insecurity.     

The viability of the Parenting Representations Interview for assessing and measuring change in parents of adolescents

Parents’ representations include parents’ views of their adolescent, of their own parenting and of the parent–adolescent relationship. Two longitudinal studies of parents and their adolescent sons and daughters support the validity of scales coding mothers in the Parenting Representations Interview-Adolescence (PRI-A). The studies, conducted in Israel during the transition from home to military service, demonstrated that three dimensions derived from the PRI-A: positive representations of adolescents, negative emotionality and inadequate boundaries were associated with adolescents’ AAI variables, relatedness-autonomy behaviors with mothers, and with other indicators, such as adolescents’ wellbeing, romantic intimacy and individuation. Examining parenting representations could help practitioners pinpoint targets for intervention and evaluate the changes that families go through during psychotherapy, as well as the therapeutic process and its outcomes. The findings support the viability of the PRI for use in attachment based interventions for adolescents.     

Understanding the potential role of mobile phone-based monitoring on asthma self-management: qualitative study

BACKGROUND: National and international healthcare policy increasingly seeks technological solutions to the challenge of providing care for people with long-term conditions. Novel technologies, however, have the potential to change the dynamics of disease monitoring and self-management. We aimed to explore the opinions and concerns of people with asthma and primary care clinicians on the potential role of mobile phone monitoring technology (transmitting symptoms and peak flows, with immediate feedback of control and reminder of appropriate actions) in supporting asthma self-management. METHODS: This qualitative study recruited 48 participants (34 adults and teenagers with asthma, 14 asthma nurses and doctors) from primary care in Lothian (Central Scotland) and Kent (South East England). Thirty-nine participated in six focus groups, which included a demonstration of the technology; nine gave in-depth interviews before and after a 4-week trial of the technology. RESULTS: Participants considered that mobile phone-based monitoring systems can facilitate guided self-management although, paradoxically, may engender dependence on professional/technological support. In the early phases, as patients are learning to accept, understand and control their asthma, this support was seen as providing much-needed confidence. During the maintenance phase, when self-management predominates, patient and professionals were concerned that increased dependence may be unhelpful, although they appreciated that maintaining an on-going record could facilitate consultations. CONCLUSION: Mobile phone-based monitoring systems have the potential to support guided self-management by aiding transition from clinician-supported early phases to effective self-management during the maintenance phase. Continuing development, adoption and formal evaluation of these systems should take account of the insights provided by our data.     

The Quality and Outcomes Framework and self-management dialogue in primary care consultations: a qualitative study

Background

Two key elements to improve the quality of care for people with long-term conditions in primary care are improved clinical information systems to support delivery of evidence-based care, and enhanced self-management support. Although both elements are viewed as necessary, their interaction is not well understood.

Aim

To explore the use of computer-based ‘disease management’ templates and their relevance to self-management dialogue within clinical encounters.

Design and setting

Qualitative study of general practices located in three primary care trusts in the north of England.

Method

A qualitative mixed methods study was conducted that included comparative analysis of (1) observations of general practice consultations (n = 86); and (2) interviews with health professionals in general practice (n = 17).

Results

The analysis suggested that use of the computer templates reinforced a checklist approach to consultations, which included professionals working through several self-management topics framed as discrete behaviours. As a consequence, conversation tended to become focused on the maintenance of the professional-patient relationship at the expense of expansion in self-management dialogue. The computer templates also shaped how patient-initiated self-management dialogue was managed when it arose, with a shift towards discussion around medical agendas.

Conclusion

In order to enhance the management of long-term conditions in primary care, the design and implementation of clinical information systems to improve evidence-based care need to take into account their potential impact on supporting self-management.     

Qualitative analysis of perceived impacts on childhood food allergy on caregiver mental health and lifestyle

BackgroundApproximately 8% of children have food allergy. Yet, little is known about how parents cope with the burden of this disease.ObjectiveThis study aimed to describe the perceptions of food allergy–related mental health issues of parents of children with food allergy.MethodsParents of children with pediatric allergist–diagnosed food allergy were recruited through allergy clinics and education centers in a large Canadian city. We used content analysis to identify overarching themes.ResultsWe interviewed 21 parents with children (boys [13/21; 62.9%]) aged younger than 12 months to 16 years. Interviews averaged 47 (range 33-82) minutes. Most children were diagnosed as infants, and few (7/21; 33.3%) were monoallergic. About one-half (7/16; 43.8%) had a history of anaphylaxis. Parents of children with a single food allergy spoke of “accommodation and adaptation.” In contrast, parents of children with multiple food allergies described “anxiety and isolation” and spoke of being “depressed” and “terrified” about leaving their children in the care of others who may not be equipped to handle food allergy. Many parents felt “overwhelmed and alone,” especially if they lacked support from extended family and/or their social circle. “Fear for today, fear for the future” was commonly described by parents, although a tenuous symbiotic coexistence was developed, with parents stating “Food allergy management has become our normal.” Finally, a small group of parents reported that “Bullying happens, but we are alone to cope with it.”ConclusionMultiple food allergies negatively affect the mental health of parents, in a variety of well-being domains.     

Healthy aging with HIV: The role of self-management support

People living with HIV on antiretroviral treatment have significantly improved longevity, but as a result may also face increasing multimorbidity due to aging and long-term medication use. Thus, care needs for this population have evolved to require a chronic disease management approach in which self-management plays a central role. Here we highlight the importance of expanding self-management support options for people living with HIV, and discuss strategies for implementing and evaluating self-management interventions, outlining potential opportunities, challenges and solutions. We contend that standardized programs such as those offered through the Self-Management Resource Centre provide a rich opportunity to build the evidence base regarding the potential effectiveness of self-management support among people living with HIV. Thus we recommend enhancing self-management support through meaningful community-level collaboration with people with lived experience, careful assessment of process and outcome factors including who does not participate and why, attention to stigma and the specific needs of HIV priority groups, and consideration of how to extend engagement with services to address social and material needs beyond self-management program participation. We hope this reflection will serve as an aide for researchers and program managers to improve the array of evidence-based self-management support options available to people living with HIV.     

A majority of parents of children with peanut allergy fear using the epinephrine auto‐injector

Prompt epinephrine administration is crucial in managing anaphylaxis, but epinephrine auto‐injectors (EAIs) are underutilized by patients and their families. Children with peanut allergy were recruited from the Allergy Clinics at the Montreal Children's Hospital, food allergy advocacy organizations and organizations providing products to allergic individuals. Parents of children who had been prescribed an EAI were queried on whether they were fearful of using it and on factors that may contribute to fear. A majority of parents (672/1209 = 56%) expressed fear regarding the use of the EAI. Parents attributed the fear to hurting the child, using the EAI incorrectly or a bad outcome. Parents whose child had longer disease duration or a severe reaction and parents who were satisfied with the EAI training or found it easy to use were less likely to be afraid. Families may benefit from simulation training and more education on the recognition and management of anaphylaxis.     

农村留守儿童焦虑的特点及影响因素

目的:了解农村留守儿童焦虑的特点并探讨其影响因素。方法:对取自重庆、贵州两地乡镇的667名中小学生(包括留守及非留守儿童)进行焦虑水平及相关因素的调查。结果:农村留守儿童在状态焦虑水平上要明显地高于父母均在家的儿童,而两者在特质焦虑上没有显著的差异。同时,农村留守儿童个体焦虑水平之间存在着一定差异。首先,父母离开时,儿童的年龄越小,留守儿童的焦虑水平越高。其次,父母与留守儿童的联系频次对其焦虑水平也有重要的影响。结论:父母在儿童的早期最好避免与其长期分离,外出打工后要尽量加强与孩子的联系,将有助于缓解留守儿童的焦虑情绪。     

Anaphylaxis: epidemiology,aetiology and relevance for the clinic

Introduction: Anaphylaxis is responsible for considerable morbidity and may in some cases prove fatal.

Areas covered: This review summarises the findings from recent studies on the epidemiology and aetiology of anaphylaxis and draws on the insights from this work and recent international guidelines to consider the implications for clinical care. Acute management of anaphylaxis is centred on early recognition, treatment with adrenaline (epinephrine) and other essential life-support measures. The importance of longer-term care of patients with a history of or at risk of anaphylaxis are also considered with a view to minimising the risk of further reactions. Tailored individual anaphylaxis management plans should be a routine component of this longer-term care with provision of adrenaline auto-injectors to those at risk of further episodes of anaphylaxis. More generally, there is a need to ensure that there are standard protocols in place to ensure that risks of triggering anaphylaxis are minimised and appropriate acute and long-term care are provided if reactions occur.

Expert commentary: It is important to be aware that anaphylaxis may occur in patients of any age, sex or ethnicity. Early recognition and prompt treatment with adrenaline are potentially life-saving. Careful assessment of risk and appropriate long-term management are key to improving long-term outcomes in those at risk of repeat episodes of anaphylaxis.     

Women's anxiety in old age and long-term care provision for the elderly

The purpose of this study was to verify the differences in women's anxiety in old age, the expected long-term care provision, and the expected final location for terminal care for the women themselves and for their parents. In addition, we examined factors that related to their anxiety and needs. The subjects were 1,000 women of the Seikatsu Club customer cooperative association in Chiba; 539 responded to our survey. The subjects were more anxious for their parents than for themselves. They more strongly expected long-term care for their parents to be provided by their family than they expected the same for themselves. Although no differences were observed in the expected location for terminal care, most subjects expected their home to be the terminal location. Analysis by the multiple logistic regression model indicated that the following factors were significantly related to the anxiety in old age: age odds ratio [OR = 1.81], employment [OR = 2.25] for women, and planning to live with parents [OR = 2.42], housing conditions [OR = 0.56] for parents. The following factors were significantly related to the expected long-term care provision: age [OR = 2.22] for women, and age [OR = 2.15], living with parents [OR = 3.58], and employment [OR = 2.33] for parents. Age [OR = 2.14] for women, and planning to live with parents [OR = 2.09] for parents were significantly related to the expected final location of terminal care. This survey showed that women expected long-term care for their parents to be provided by their family, while many expected public long-term care services for themselves. This is the biggest difference in women's outlook on long-term care for their parents and for themselves. Multivariate analysis suggested that women aged 40 years or over, who will need long-term care in the future, tended to expect public home care services for themselves. It is virtually certain that the demand for public home care services will increase in the future.     

家长对高中生异性交往的态度和做法

目的：研究家长对高中生异性交往的态度和做法，提高家长的指导子女异性交往的能力。方法：在广东番禺中学随机选取3个高中教学班，对学生家长(有效样本136个)采用自编问卷进行调查。结果：家长对高中生性心理特点的认识水平较低，对异性交往、青春期恋爱和婚前性行为的部分态度做法不当；相对年轻、受教育程度较高、相关认识正确的家长．在态度和做法上更加恰当；母亲比父亲做法更恰当。结论：家长的受教育水平、接受新事物的能力和富于母爱是恰当性教育的促进因素。     

Organising primary health care for people with asthma: the patient's perspective.

BACKGROUND: The 1993 chronic disease management contract encourages United Kingdom general practices to implement a standardised package of care with an emphasis on regular visits to an asthma clinic. AIM: To explore the views of people with asthma about the organisation of asthma care in general practice. METHOD: Semi-structured interviews with 20 patients registered with one practice with a nurse-run asthma clinic. The sample was selected to provide people with a wide range of ages and disease severity, and included parents of children. RESULTS: The age range of the interviewees was five to 87 years (parents of children were interviewed) and half of the interviewees had attended the asthma clinic at some time. In describing how they managed their asthma, people identified their medical care alongside other important factors, such as avoiding smoking and pollution, and a decision to seek medical help was made in the context of all of life's other priorities. People expressed diverse views about the organisation of care, describing how their needs changed over time and how they balanced up several factors in deciding what was best for them. These factors were encompassed by four themes: the accessibility of care, severity of asthma and dealing with uncertainty, self-knowledge and self-management, and expert knowledge and therapeutic relationships. Interviewees were evenly split between wishing to be seen regularly in the clinic and wishing only to attend when needing help. CONCLUSION: Patients required asthma services that allow individual choice and flexibility, and eight service objectives were identified that would cover most people's needs.     

Understanding needle‐related distress in children with cystic fibrosis

Objective. To explore the nature and management of needle‐related distress in children and adolescents with cystic fibrosis (CF). Design. Qualitative study using semi‐structured interviews. Methods. Fourteen child–parent dyads took part. Children (5 male; 9 female) had a mean age of 12.4 years (range 7–17) and were mostly diagnosed with CF at birth (N= 11). Frequency of needle procedures ranged from once to six times a year. Parents (3 male; 11 female) had a mean age of 41.5 years and were from a variety of socio‐economic backgrounds. Interviews were transcribed and analysed using thematic analysis. Results. Most participants identified previous needle experiences and pain as related to their needle anxiety. Over half of parents and children considered ‘taking control’ to be the optimum coping strategy. The majority of parents and children thought inhaled nitrous oxide gas during needle procedures was helpful in managing needle‐related distress. Parent and staff influences on needle‐related distress are also examined. Conclusions. Needle‐related distress in children with CF has a substantial impact on children and their parents, and may lead to management problems and treatment refusal. Psychological and pharmacological interventions could reduce distress and aid management.     

Structured parent education in the management of childhood atopic dermatitis: the Berlin model

Childhood atopic dermatitis (AD) is a common disease with the prevalence rates increasing. Its chronic course with frequent relapses puts a special burden on both children and their parents. To maximise positive long-term outcome in the management of AD it is important to support parents in dealing with the chronic condition of their child in addition to treating symptoms. In the present article, we describe in detail the goals, structure, and content of the Berlin education program for parents of children with AD. The program aims to contribute towards a comprehensive, family-oriented management of childhood AD. Its objective is to improve parent’s self-management skills with regard to their child’s disease and to positively impact the course of the disease as well as the family’s quality of life. Medical, nutritional and psychological issues are covered in six group sessions which are conducted by a multiprofessional team of paediatricians, psychologists and dieticians. Preliminary data show that the program has a desirable effect on aspects of quality of life and coping.     

Qualitative study of young people''s and parents'' beliefs about childhood asthma.

BACKGROUND: Asthma continues to be a common childhood chronic illness managed principally in primary care. Self-management requires co-ordinated efforts of young people, carers and health professionals. Non-compliance occurs even when parents are supervising care, suggesting that decisions are made on the basis of beliefs that contrast with professional advice. Health professionals therefore need to understand the views of parents (or other carers) and patients to promote good self-management. Little attention has been given to carers' and young people's perspectives on asthma. AIM: To gain insights into the beliefs of a group of 25 young people aged nine to 16 years old and their carers about asthma and its management. DESIGN OF STUDY: Qualitative study using conversational-style interviews. SETTING: Generally deprived urban areas of Greater Manchester. METHOD: Interviews were conducted with 25 young people with asthma and separately with their carers. The interviews were analysed using the principles and procedures of grounded theory. RESULTS: Carers reported assessing asthma symptoms through observed effects on the child and other family members, including emotions and behaviours that disrupted family life. Young people emphasised the effect of asthma on their everyday lives and in particular the extent to which they appeared different to their peers. Some young people reported continuing symptoms and restrictions of activity that differed widely from the reports of their carers. CONCLUSION: Differences between young people's and carers' criteria for assessment suggest explanations for some 'non-compliant' behaviour. Carers' assessment of asthma severity through the absence of acute attacks is consistent with managing asthma as intermittent acute episodes. Professionals should take account of differences between young people's, carers' and professionals' perceptions of asthma.     

Children with cystic fibrosis benefit from massage therapy.

OBJECTIVE: To measure the effects of parents giving massage therapy to their children with cystic fibrosis to reduce anxiety in parents and their children and to improve the children's mood and peak air flow readings. METHODS: Twenty children (5-12 years old) with cystic fibrosis and their parents were randomly assigned to a massage therapy or a reading control group. Parents in the treatment group were instructed and asked to conduct a 20-minute child massage every night at bedtime for one month. Parents in the reading control group were instructed to read for 20 minutes a night with their child for one month. On days 1 and 30, parents and children answered questions relating to present anxiety levels and children answered questions relating to mood, and their peak air flow was measured. RESULTS: Following the first and last massage session, children and parents reported reduced anxiety. Mood and peak air flow readings also improved for children in the massage therapy group. CONCLUSIONS: These findings suggest that parents may reduce anxiety levels by massaging their children with cystic fibrosis and their children may benefit from receiving massage by having less anxiety and improved mood, which in turn may facilitate breathing.