The experience of patients with lymphoedema undergoing a period of compression bandaging in the UK and Canada using the 3M™ Coban™ 2 compression system

This article reports on a qualitative study that explored the experience of patients who have undergone a period of complete decongestive therapy using the 3M? Coban? 2 compression system (Coban 2 system). Qualitative data were collected from 12 patients from the UK and 8 from Canada with a range of presentations of lymphoedema. Single semi‐structured interviews were used and participants were asked questions relating to their experience of diagnosis, the impact of lymphoedema on their lives, previous treatment using multilayer lymphoedema bandaging and their experiences of the 3M? Coban? 2 system. Treatment with multilayer lymphoedema bandaging was seen as constraining in that it was tiring, time consuming, heavy, bulky and led to feelings of clumsiness and a restricted life. Treatment with the 3M? Coban? 2 system was reported as enabling in that it was quicker and easier to apply, increased mobility, enhanced patient confidence and provided a sense of control and well‐being. The article also explores how aspects of the 3M? Coban? 2 system might be improved from the patient's point of view.     

Beneficial effects of a hospital bereavement intervention program after traumatic childhood death

PURPOSE: An investigation of the experiences of parents grieving the traumatic death of their child, the initiatives that helped, and common parental concerns that would benefit from improved education. METHODS: From January 1, 1995, to December 31, 1998, 81 of 3,501 children admitted to our pediatric trauma center died. An attempt was made to enroll all parents. Interactions included family contact at hospital, home/funeral home visit within 1 month of death, educational meeting with parents and 15 supporters at a restaurant within 2 months of death, follow-up survey to parents/supporters, and final interview/survey with parents in 1999-2000. RESULTS: Seventy-seven families were enrolled; 59 families completed the educational meeting with supporters, and 245 parental supporters returned surveys. Supporters were likely to use proposed interventions (82%), were more accepting of the duration of grief (94%), and interacted with parents more often after the death (78%). Parents (n = 44) felt the hospital staff was appropriately sensitive to their child (90%), themselves (93%) and prepared them for their child's death (81%). Parents (n = 54) on behalf of 37 children have completed the final interview. Poor conceptualization of aspects of the medical care and brain death, and delayed regret for missing the opportunity to donate organs, were recurring themes. CONCLUSION: We conclude that parents' unanswered questions or misconceptions regarding brain death, organ donation, and their child's medical care adversely affect their grief; that "normal life" for parents is challenged as they struggle to establish a new sense of normal; and that hospital and trauma service personnel can positively impact the grieving process with appropriate training.     

Stresses in the lives of parents of children with disabilities: Providing effective caregiving

Families of children with significant developmental delays and disabilities must contend with stressors produced both by the prejudices and fears, the ‘countertransference’ reactions, of the larger society, and by the conflicts and griefs which arise within the family's own interactions and dynamics. The nature and substance of these stresses are reviewed, both from a societal context and from the context of the nuclear family environment. Themes of social deviance, isolation, and blame attributión are examined, as are problematic parent - professional relationships, and the impact of a disabled child on various family subsystems. Therapeutic responses to chronic family stresses appropriate to a range of health care professionals are explored. The article concludes with a summary of caregiving strategies helpful in developing healing relationships with families of children with disabilities.     

An epidemiological study of enuresis in Korean children

OBJECTIVE: To estimate the prevalence of enuresis in children of elementary school age, to evaluate the impact of enuresis on these children and their parents, and to identify the methods and effectiveness of managing enuresis. Subjects and methods A randomly selected cross-sectional study was conducted in one elementary school in each urban ward (nine schools) in Pusan, Korea. The parents of these 12 570 children aged 7-12 years were asked to complete questionnaires which included items about the presence and frequency of enuresis, its perceived impact and management. Enuresis was defined as an episode of wetting occurring at least once per month. RESULTS: The overall response rate to the questionnaire was 55.8% (girls 28.2%, boys 27.6%). The prevalence of nocturnal, diurnal and combined enuresis was 9.2%, 2.2% and 1.4%, respectively. The overall prevalence of enuresis declined with age from 20.4% at 7 years old to 5.6% at 12 years old; 342 (57.0%) parents and 318 (55. 6%) children were concerned about enuresis. The common self-help strategies were waking the child at night to void (38.1%) and restriction of water intake (25.7%). Of the enuretic children, only 13.7% had consulted a health worker. CONCLUSION: The prevalence rates for enuresis in Pusan are similar to those reported from European countries. Enuretic children and their parents were moderately concerned about enuresis and the parents primarily used self-management within the family.     

Considerations for psychosocial support following burn injury--a family perspective

As part of a larger study involving burned adults and parents of burned children, family members were asked for their views regarding the impact of burn on themselves and the family (N = 50). The aim is to describe the range of psychosocial issues that psychosocial support programmes may need to address. This paper reports on the content analysis of specifically designed self-completion questionnaires. The results reveal commonalities within support needs across the three study groups (siblings, children, and partners). These are recommended as key elements in a family support programme: (i) normalising of family member's reactions to the burn. (ii) Advice, support, and information regarding scar permanence, realistic outcome expectations, acceptance of altered appearance, and potential after-effects of burn. (iii) Support in understanding how a burned individual may change or respond following injury and advice regarding constructive methods of coping with altered family dynamics and after-effects of burn. (iv) Advice to enable family members and their burned relative to effectively deal with potentially uncomfortable social encounters.     

A survey of parental satisfaction during parent present induction of anaesthesia for children undergoing cardiovascular surgery

METHODS: To assess parental reaction and possible complications of parent present induction (PPI) for children undergoing cardiovascular surgery, the parents of 183 patients were provided with a questionnaire to complete after they had participated in PPI. Questions included: prior experience with PPI, which member of the staff initiated the plan for PPI, parental role in the process, how prepared parents felt, and overall satisfaction. RESULTS: PPI was successfully performed in the 183 patients surveyed. No parent was asked to leave the operating room because of respiratory or haemodynamic complications; 77.6% of the parents had no prior experience with PPI; however, 91.8% were aware of their role in the operating room, 94.5% were aware how their child would be anaesthetized and 96.7% felt prepared for their role and believed that this was a positive experience for themselves and their child. CONCLUSIONS: This prospective survey demonstrated a high level of parental acceptance and satisfaction for PPI in children undergoing cardiovascular surgery, with a low incidence of untoward events, despite the underlying congenital heart disease. Further work is necessary to objectively characterize anxiety levels associated with induction of anaesthesia in this group of patients and parents.     

‘Wondering and waiting’ after obstetrical brachial plexus injury: Are we underestimating the effects of the traumatic experience on the families?

BACKGROUND:

Obstetrical brachial plexus injury (OBPI) in children can cause great distress to a family due to uncertain recovery, variability in spontaneous recovery and unclear indicators for surgery.

OBJECTIVE:

To investigate the impact of having a child with OBPI on the family and whether the Impact on Family Scale (IoFS) can assist in addressing family concerns.

METHODS:

A mixed-method (cross-sectional survey and semistructured interviews) study design was used.

RESULTS:

Thirty-eight families of children with OBPI completed the IoFS. Surgery significantly predicted a higher IoFS total impact score (P=0.02). No statistically significant association between the total impact score and severity or age was found, suggesting that impact on family was not dependent on these factors. Themes that emerged from the interviews included traumatic birthing experience, wondering and waiting, and experiencing surgery.

CONCLUSION:

All families should receive support and acknowledgement of the widespread impact of OBPI.     

“Il faut continuer à poser des questions” patient reported outcome measures in cystic fibrosis: An anthropological perspective

BackgroundPeople with cystic fibrosis (pwCF) are central in the development of patient-led assessment tools. Qualitative analysis of a frequently used CF-specific patient-reported outcome measure (PROM) sought patient recommendations for development of a new quality of life (QoL) tool.MethodsWe performed an inventory of PROMs, symptom-report and QoL tools used in clinical trials within the European Cystic Fibrosis Society Clinical Trial Network (ECFS-CTN) and in routine clinical practice among Cystic Fibrosis Europe and ECFS members. A qualitative study using cognitive interviews with pwCF and their caregivers reviewed the Cystic Fibrosis Questionnaire (CFQ), the French initial form of the Cystic Fibrosis Questionnaire-Revised (CFQ-R).ResultsSurvey results from 33 countries revealed over 70 tools used in routine clinical practice, utilized by clinical specialists (n=124), pwCF/parents/carers (n=49) and other allied health professionals (n=60). The CFQ-R was the main PROM used in clinical trials. The qualitative study enrolled 99 pwCF, 6 to 11 years (n=31); 12 to 18 years (n=38); >18 years (n=30) and 26 parents. Inductive thematic analysis based on the CFQ, revealed 19 key themes. Themes common across all cohorts included burden of treatment, impact of disease on day-to-day life, relationships/family, stress/mood, and nutrition. Themes unique to individual groups included, treatment when not symptomatic for the paediatric group; education/studies and planning for the future for adolescents, impact of anxiety and depression on day-to-day life for adults, and for parents, questions addressing anxiety and their role as carers.ConclusionsPatient-centeredness is paramount in development of an up-to-date PROM in the era of novel therapies.     

Preanesthetic preparation of pediatric outpatients: the role of a videotape for parents.

Expanded outpatient surgery for pediatric patients makes it difficult to provide an unhurried and thorough preoperative visit. A useful component could be a videotape to be seen by parents at the time of their initial hospital visit. For this study, a videotape was made that included an actual induction of anesthesia procedure, information about pediatric anesthesia, and a discussion of the risks of injury or death during anesthesia. To decrease anxiety from discussion of risk, monitoring equipment was shown and explained. This survey investigated whether, after seeing the tape, the parents of children scheduled for outpatient surgery thought they were better informed and less anxious about the child's anesthetic. During a preoperative clinic visit, an interviewer introduced the tape and its purpose to 31 parents of 25 children, then asked a series of standard questions. When asked directly, most parents (74%) said the film did not change their concerns about the anesthetic, although 42% of the parents of the children with no surgical history reported decreased concern. In contrast, 84% to 97% of the parents considered seven specific aspects of the film to be helpful in reducing concern. Half were reminded of issues to be discussed with the child's anesthesiologist. Most parents (65%) appeared to accept discussion of the risk of perioperative death, although some had strongly negative reactions. The results suggest that a supportive preoperative tape can acquaint parents with the basis for anesthesiologists' concerns and facilitate the preoperative visit. Seeing an actual anesthetic may help to reassure parents about the anesthetic care their children will receive.(ABSTRACT TRUNCATED AT 250 WORDS)     

Embracing survival: A grounded theory study of parenting children who have sustained burns

The positive effect of supportive family environment on burn-injured child's long term outcome is well established. How parents provide this support as they recover with their children is not addressed especially in low and middle income countries where the burn burden is high. It is assumed that parents are non-compliant in bringing their children for follow up. Using grounded theory methodology this study aimed to explore and discover the process of parenting children in India with burn injury. Semi-structured interviews with 22 family members of 12 burn-injured children and field notes yielded rich data. The analysis by open and focused coding and constant comparisons of participants’ accounts revealed a parenting process of embracing survival. For parents embracing survival involved (1) suffering the trauma along with their burn-injured child, (2) sustaining the survival of their child, and (3) shielding the child from stigma related to scarring and disfigurement. Parents perceived minimal support from health professionals and family members. Mothers and fathers formed a team and did their best for their burn-injured children. Assessing and meeting the needs of the parents and empowering parents to provide effective long term care are vital components of burn care. The health professionals’ perceptive on parenting burn-injured children need to be explored.     

Fact and fantasy: psychosocial consequences of facial surgery in 24 Down syndrome children

Twenty-four children with Down syndrome were evaluated to investigate whether appearance, family functioning and intellectual functioning improved after facial reconstruction. Pre- and postoperatively, families were interviewed by a psychosocial team, the children's intellectual functioning was measured and parents were asked to rate their child's facial appearance on the Hay's Scale and to complete the FACES II, a questionnaire determining family functioning. Parents' ratings were compared with the scores of lay raters who viewed randomly presented pre- and postoperative photographs. Measurements of intelligence and family functioning revealed no postoperative improvement and lay raters considered postoperative appearance as slightly less attractive. However, parents rated their children's appearance as noticeably improved and reported happier personal, family and social lives. Thus, positive psychosocial consequences may largely be the result of parents' satisfaction with surgical results, providing them with hope for the future. Presurgical family assessment to clarify surgical limitations and parental expectations is essential.     

Motivation and parental presence during induction of anesthesia: an examination of the role of ethnicity and language

Objectives: To examine the role of ethnicity and language in parental desire and motivation to be present for children’s anesthesia induction. Aim: To compare motivation for parental presence at induction of anesthesia (PPIA) between English‐ and Spanish‐speaking White and Hispanic parents of children undergoing outpatient surgery. Background: The effectiveness of PPIA may depend, in part, on parental motivation and desire to be present at children’s anesthesia induction; however, cultural variables such as ethnicity and language have not previously been explored in this relationship. Methods/Materials: Participants included 258 parents of children undergoing outpatient surgery and general anesthesia. Parents were grouped by self‐reported ethnicity and primary language spoken into English‐speaking White (ESW, n = 55), English‐speaking Hispanic (ESH, n = 108), and Spanish‐speaking Hispanic (SPH, n = 95) groups. Measures included the Motivation for Parental Presence during Induction of Anesthesia (MPPIA) and a 4‐item measure of preference for PPIA. Results: The majority of parents (73%) expressed a preference for PPIA. Analyses controlling for group differences in socioeconomic status and demographic variables revealed that English‐ (P = 0.03) and Spanish‐speaking (P = 0.06) Hispanic parents reported significantly greater levels of desire to be present for their child’s anesthesia induction compared to English‐speaking White parents. English‐speaking Hispanic parents also reported greater levels of beliefs about the impact of anxiety on children’s anesthesia induction compared to English‐speaking White parents (P = 0.07). Conclusions: Parental ethnicity and language may impact desire and motivation for PPIA, which may subsequently impact the effectiveness of PPIA and child anxiety at anesthesia induction. Future research should examine the impact of parental characteristics, including cultural variables, on children’s preoperative anxiety.     

Parent experiences and psychosocial support needs 6 months following paediatric critical injury: A qualitative study

IntroductionParents of critically injured children can experience high levels of psychological distress post-injury, however little is known about their experiences and needs following injury. This study aimed to explore parent experiences and psychosocial support needs in the six months following child critical injury.MethodsAn interpretive qualitative design was used. Semi-structured interviews were conducted with 30 parents of 23 critically injured children. Interviews explored parent experiences and psychosocial support needs. Qualitative data were managed using NVIVO 10 and analysed thematically.ResultsFour themes were identified: integrating back into home life; adjusting mentally and emotionally to injury; coping with injury as a family; and navigating resources to meet family needs. Parents and families experienced substantial ongoing emotional impacts at 6 months following child injury. Parents were unprepared for the negative changes in their child’s psychological wellbeing and behaviour post injury, and parents’ mental health was negatively impacted, with mothers more likely to seek emotional support than fathers. Parents reported receiving no psychosocial follow-up from the hospital and limited information about community services and accessing local community resources on returning home.ConclusionsThere is a need to include all family members in discharge planning, and to use a family-centred continuity-of-care approach from the time of child injury through to post-discharge recovery. To strengthen parent and family wellbeing, a biopsychosocial holistic approach is recommended, including cognitive-behavioural and other psychological strategies to help reduce distress for parents and all family members and strengthen their coping capacity. A dedicated family support coordinator role to facilitate care over the child recovery trajectory, and development of accessible online and e-psychosocial support resources for parents and families are recommended.     

脊髓损伤患儿父母照顾体验的质性研究

目的 深入了解脊髓损伤患儿父母的照顾体验,为促进其身心健康提供参考。方法 采用现象学研究方法,以立意抽样法抽取11名脊髓损伤患儿的父母进行半结构化访谈,运用Colaizzi分析法归纳主题。结果 提炼出4个主题,分别为承受照顾负荷、心理体验复杂、适应角色改变并提高照顾技能、渴望家庭和社会支持。结论 脊髓损伤患儿父母的照顾负荷较重,存在负性心理,医护人员需重视评估患儿父母照顾感受,并提供积极的心理干预指导,必要时提供适当的社会支持,以减轻其照顾负荷,改善其心理状况。     

Resilience-promoting factors for parents of severely injured children during the acute hospitalisation period: A qualitative inquiry

BackgroundPaediatric injury impacts the entire family. Many parents experience stress and anxiety following paediatric injury, but little is known about factors that support parents’ wellbeing and how they successfully manage the adversity of child injury during acute hospitalisation.AimTo explore parent experiences and resilience-promoting factors that facilitate the wellbeing of parents with severely injured children during the acute hospitalisation period.MethodsA qualitative inquiry conducted across four major Australian paediatric trauma services. Semi-structured interviews were conducted with a purposive sample of 40 parents of 30 severely injured children aged 0–12 years during the acute post-injury hospitalisation period. Interviews explored parents’ experiences and how parents had managed the stress of their child’s injury during the acute hospitalisation period. Data were analysed using directed content analysis.ResultsParents identified a range of individual characteristics and resources, and those of their children and families, communities, and the hospital environment, which facilitated their wellbeing during the initial post-injury period. Three themes were derived from analysis: Drawing on inner strengths; Having positive and supportive relationships; Being in a safe place with the right help.ConclusionResilience-promoting factors for parents of injured children can be used to inform development of brief online intervention modules to enhance parent resilience. Routine screening and targeted psychological first aid for parental distress are recommended.     

Introducing the need for lung transplantation in children with cystic fibrosis: Parental experiences

Lung transplantation (LTx) is the only treatment available for adult and pediatric end-stage lung disease secondary to cystic fibrosis (CF). The timing of introducing LTx has significant medical and psychological implications for the child and the family. This study explored the views and recommendations of parents of children with CF, who had been asked to consider LTx and referred to a national transplant centre. Parents participated in a telephone-based, semi-structured interview. Responses were analysed using Content Analysis. Parental recommendations and the emergent protocol are discussed, together with implications for clinical practice.     

Exploration of physicians' recommendations for activities in chronic low back pain

STUDY DESIGN: A mailed survey of 142 practicing physicians (63 orthopedic spine surgeons and 79 family physicians) inquiring about their expertise and experience with chronic low back pain, their pain attitudes and beliefs, and recommendations about the appropriate level of function for chronic back pain patients. OBJECTIVES: To explore physicians' recommendations for activity and work for patients with chronic low back pain and to determine factors that might influence these recommendations. SUMMARY OF BACKGROUND DATA: Physicians continuously are asked to recommend the appropriate level of activities and work for patients with chronic low back pain. Although these recommendations can have a significant impact on patients' lives, little is known about the factors that shape recommendations. METHODS: Mailed surveys included questions inquiring about the physicians' demographics, training, and experience in low back pain, the Health Care Providers' Pain and Impairment Relationship Scale, and three vignettes of work-disabled, chronic low back pain patients. After each vignette, physicians rated their perceptions of severity of symptoms and pathology and recommendations for work and daily activities through five graded responses. Three mailings were done within 4 weeks to maximize the response rate. The association of each variable with work and activity recommendations was statistically explored. To assess the influence of clinical expertise on recommendations, the responses of orthopedic spine surgeons were compared with those of family physicians. Test-retest reliability was assessed with a second mailing of the questionnaire to all initial responders. RESULTS: Sixty-five percent of the orthopedic surgeons and 52% of the family physicians responded to the survey. Thirty-nine percent of the initial responders completed the reliability survey. The survey instrument demonstrated modest reliability, with identical recommendations for activities and work occurring 57% of the time. In general, a wide range of activities and work was recommended, with most physicians recommending avoidance of painful activities or greater restrictions. Orthopedic spine surgeons were slightly less restrictive in their activity recommendations compared with family physicians. Most physicians demonstrated some consistency in their pattern of recommendations when compared with their colleagues. Physicians' pain attitudes and belief influenced their recommendations, as did their perception of the severity of the patients' clinical symptoms. CONCLUSIONS: Physicians' recommendations for activity and work to patients with chronic back pain vary widely and frequently are restrictive. These recommendations reflect personal attitudes of the physicians as well as factors related to the patients' clinical symptoms.     

Preoperative psychological preparation for children undergoing ENT operations: a comparison of two methods

A psychological preparation programme was developed for outpatient surgery in children. The purpose of this study was to determine if the programme could increase retrieval of information and reduce anxiety prior to ENT surgery. After ethical committee approval, 160 children and their parents were included. Eighty children (group 1) received conventional verbal information from an ENT nurse, and another 80 children (group 2) received specific information, including role-play, from a nurse anaesthetist at a preadmission visit. Children's and parents' experience of premedication, operation theatre (OR), i.v.-needle insertion and induction of anaesthesia were evaluated from a self-rating questionnaire. The questionnaire included ratings for anxiety and satisfaction with information and care. The results indicate a clear improvement of the preoperative acquisition of knowledge in all age groups. When it comes to alleviation of fear, a positive effect of the preparation programme was noticed, especially among the younger children (< 5 years), while preoperative anxiety overall was a significantly smaller problem among the older children. The effects of the programme were also related to previous experience of anaesthesia and most beneficial among young children with such experience. Overall, the most negative procedure reported by the children was the i.m. injection for premedication (a routine which was abandoned as a result of the study), followed by the insertion of the i.v. -needle. The parents experienced watching their child fall asleep during induction of anaesthesia as most negative, followed by the insertion of the i.v.-needle. Parents also reported more satisfaction and less anxiety after having received specific information and preparation preoperatively. It was concluded that this preoperative preparation programme is useful in all age groups with regard to information, while alleviation of anxiety and fear was seen mainly among the younger children with previous experience of anaesthesia.     

Postoperative pain in children: a survey of parents' expectations and perceptions of their children's experiences

Parental expectation and participation in postoperative analgesia is very important in paediatric practice. In order to improve postoperative pain management in children, the parents of 31 elective surgical children, three months to 15 years of age, were asked preoperatively about their expectations regarding their children's postoperative pain and pain relief. At 24 h after surgery, the parents were asked about their perceptions of their children's pain and pain control. The survey indicates that the parents had high expectations of good pain relief. They wanted effective analgesia administered promptly when the children had some pain. However, current practice in controlling pain after surgery is still not optimal. Nine (29%) of the children experienced severe or unbearable pain or experienced pain for the whole of the 24 h after surgery. An approach to improve pain management in children could be for the hospital staff to reorganize and to develop an ‘acute pain service’. A pain service may not require new technology, but instead be based on more effective communication and skill in utilizing the traditional systems.