Self-concept development in children with limb differences: A scoping review.

Having a visible physical difference, such as a limb difference, can have a significant impact on a child's psychosocial development, as children with limb differences may experience negative psychosocial sequelae. The aim of this scoping review was to investigate the findings of literature pertaining to self-concept of children with limb differences. Using the PRISMA ScR guidelines, a literature search was conducted in Embase, CINAHL, PsycINFO and PubMed databases. Nine articles met the inclusion criteria and were included in this review. Two studies focused on evaluating self-concept, whereas the remaining seven studies focused on associated constructs of self-concept (i.e., self-perception and self-esteem). The findings of these studies indicated that the social environment directly impacted the development of psychopathology and self-concept in children with limb differences. This review demonstrated a need for a gold standard instrument with which to assess children's self-concept. CLINICAL RELEVANCE: Level IV: Evidence derived from guidelines developed from a systematic review of existing qualitative, quantitative, and mixed methods research studies.

Being the parent of a child with limb difference who has been provided with an artificial limb: an interpretative phenomenological analysis.

Purpose: Rehabilitative care for children with limb difference often includes the provision and use of an artificial (or prosthetic) limb. Of key influence in this process is how parents experience and respond to their child's limb difference and prosthesis use. However, research on this is lacking. Therefore, this study aimed to explore the experiences of parenting a child with limb difference who had been provided with an artificial limb.Design: Semi-structured interviews took place with seven parents. Interview data was recorded, transcribed and analyzed using interpretative phenomenological analysis.Results: The analysis identified four themes: (1) managing the initial emotional experience through the development of coping resources; (2) opportunities through prosthesis use and its relationship with "normality"; (3) managing and making sense of social reactions toward their child; (4) the intrinsic role of support: developing a collective connection and enabling shared knowledge.Conclusions: The study highlighted salient aspects to parents' experiences and sense-making that can inform clinical support. Emotional support, the management of social responses, and the holistic co-ordination of healthcare support with peer support networks are discussed. Healthcare professionals involved in the prosthetic rehabilitation process should look to explore these meanings to help support the management of the child's prosthesis use.Implications for rehabilitationUnderstanding the sense-making of parents is important in effective service provision for children with limb difference.Service provision for children with limb difference should consider the support needs of parents.Working with limb difference charities and voluntary organizations could help services develop needed parent-to-parent support networks.

Children and adolescents with VACTERL association: health-related quality of life and psychological well-being in children and adolescents and their parents.

PURPOSE: VACTERL association is a rare and complex condition of congenital malformations, often requiring repeated surgery and entailing various physical sequelae. Due to scarcity of knowledge, the study aim was to investigate self-reported health-related quality of life (HRQoL), anxiety, depression and self-concept in children and adolescents with VACTERL association and self-reported anxiety and depression in their parents. METHODS: Patients aged 8-17 years with VACTERL association and their parents were recruited from three of four Swedish paediatric surgical centres during 2015-2019. The well-established validated questionnaires DISABKIDS, Beck Youth Inventories, Beck Anxiety Inventory and Beck Depression Inventory were sent to the families. Data were analysed using descriptives, t tests and multivariable analysis. Results were compared with norm groups and reference samples. RESULTS: The questionnaires were returned by 40 patients, 38 mothers and 33 fathers. The mean HRQoL was M = 80.4, comparable to children with asthma (M = 80.2) and diabetes (M = 79.5). Self-reported psychological well-being was comparable to the norm group of Swedish school children, and was significantly higher than a clinical sample. Factors negatively influencing children's HRQoL and psychological well-being were identified. The parents' self-reports of anxiety and depression were comparable to non-clinical samples. CONCLUSIONS: Although children and adolescents with VACTERL association reported similar HRQoL to those of European children with chronic conditions, their psychological well-being was comparable to Swedish school children in general. Nevertheless, some individuals among both children and parents were in need of extra support. This attained knowledge is valuable when counselling parents regarding the prognosis for children with VACTERL association.

From crisis to self-confidence and adaptation; Experiences of being a parent of a child with VACTERL association - A complex congenital malformation.

AIM: Knowledge is scarce regarding mothers' and fathers' experiences of being a parent of a child with VACTERL association-a complex malformation. The aim of the study was to describe experiences of being a parent of a child with VACTERL association. METHOD: Semi-structured interviews were performed with ten mothers and nine fathers face-to-face or by telephone and analyzed by using Qualitative content analysis. RESULTS: The parents described crisis reactions at the discovery of malformations in their child. Involvement in care was reported from the initial hospital admission until actively taking responsibility for treatments at home. Eventually the health condition became an integrated part of everyday life. The parents expressed the importance of meeting other families with a child with VACTERL. Descriptions were given of more or less professionalism with perceived discrepancies of knowledge and experience between the healthcare professionals in the tertiary hospital and those in the local hospital. Difficulties in receiving medical support during the initial period at home were described. Furthermore, emotional support and practical arrangements regarding parental accommodation and transportation varied. CONCLUSION: Being a parent of a child with VACTERL association involves crisis, mixed emotional reactions and shared responsibility for the child´s treatment and care with the professional care providers. Psychological processing, good medical care and support from experts, and peer support from other parents is essential in the parents' struggle to reach self-confidence and adaptation. A care plan with individualized tailored care for each child including a training and support plan for the parents is warranted. To reduce the described discrepancies in knowledge and experience between the local and tertiary hospital, video sessions with the parents and responsible professionals at the local and tertiary hospital could be an appropriate mode of transferring information at discharge and follow up of the child.

Young children with severe congenital malformations (VACTERL) expressed mixed feelings about their condition and worries about needles and anaesthesia.

AIM: Our knowledge of the perceptions that children with severe congenital malformations have of their health, treatment and how to improve hospital care is limited. This study focused on patients with vertebral defects, anal atresia, cardiac defects, tracheo-oesophageal fistula, renal anomalies and limb abnormalities (VACTERL). METHODS: We interviewed 10 children aged five to eight years with VACTERL association who were treated in a Swedish tertiary paediatric surgical centre, using a computer-assisted technique called In My Shoes. The interviews were analysed by qualitative content analysis. RESULTS: The children described their awareness of their health history and said they felt proud but different due to their physical dysfunction. They were happy to visit the hospital to meet familiar staff, but expressed negative feelings about missing normal life. They were afraid of needle-related procedures and not wakening up after anaesthesia. Various ways of coping with difficult situations were expressed, and suggestions to improve hospital care were voiced. CONCLUSION: Careful follow-up of these children by multidisciplinary teams is crucial to optimise their health and functional status. Fear of medical procedures may be reduced by carefully delivered information, listening to the children, providing continuity of care and creating individual care strategies.

Providing family-centred care for rare diseases in maternity services: Parent satisfaction and preferences when dysmelia is identified.

PROBLEM AND BACKGROUND: Dysmelia is usually detected prenatally or postnatally in maternity services. The provision of family-centred care for parents at the time of initial diagnosis is crucial to facilitate decision making, access to appropriate services, and the provision of parental care-giving, but no research has investigated parent experiences or preferences in this population. AIMS: The current research aimed to address this by investigating satisfaction with service, occurrence of signposting and preferences in this group. METHODS: Two online surveys were conducted. In the first survey (n=417), parents reported whether they were offered signposting information and their level of satisfaction with the service they received when initially diagnosed. In the second survey (n=130), a subgroup of participants who completed the first survey reported their preferences for signposting and health service access after diagnosis. FINDINGS: On average, participants were less than satisfied with the service they received and only 27% were offered signposting information. Satisfaction was higher amongst parents who had been offered signposting information. 91% of parents said they would have wanted signposting information and 67% would have wanted access to a support group. CONCLUSIONS: There is a need to improve the family-centeredness of care when dysmelia is identified. Offering signposting information to relevant third-sector organisations may increase parent satisfaction and address parent preferences. These findings could have implications for parents of children with other rare diseases identified in maternity services.

Participation and quality of life in children and adolescents with congenital limb deficiencies: A narrative review.

Children and adolescents with congenital limb deficiencies are visibly and physically different from their peers. They present limitations in activities, depending on the severity of deficiency. Therefore they are at risk for lower participation in social and leisure activities. This might negatively influence the perception on their quality of life. The aim of this narrative review is to describe participation and quality of life in children with congenital limb deficiencies. Participation and quality of life are relatively new concepts. Psychosocial functioning, being closely related to the concept of quality of life, is described as well. A comprehensive review of the literature was conducted on participation, quality of life and psychosocial functioning in children and adolescents with congenital limb deficiencies. The review involved a systematic search using multiple data sources. Fifteen cross-sectional studies were included in this review. The literature to date provides limited knowledge on how children and adolescents with congenital limb deficiencies participate and how they perceive their quality of life. The psychosocial functioning, although described as at risk, appears to be comparable to healthy peers. In conclusion, more research is needed on how children and adolescents with congenital limb deficiencies participate and how they perceive their quality of life. A broader perspective will not only help parents in making the right choices for their children, but can also have implications for health care providers, teachers and agencies funding rehabilitation services.

[The psycho-social impact of the locomotor deformations in school-aged child]. / Impactul PSIHO-social la copilul de vârsta scolara suferind de deformatii ale aparatului locomotor.

Depending on their severity, congenital or acquired, the deformations of the locomotor system affect more or less the child's mental status. Adolescence is the time when their impact is most important. When the physical, mental or functional suffering become a disability, professional and psycho-social integration problems occur. The role of the team treating such a patient is to orientate him toward a specific job corresponding to his abilities, while the social services must support him in achieving this goal. The psychotherapist is the most important person in his fight against depression and, more important, suicide.

Prospective diary study of nonpainful and painful phantom sensations in a preselected sample of child and adolescent amputees reporting phantom limbs.

OBJECTIVE: To prospectively study factors associated with the occurrence of phantom sensations and pains in a pre-selected sample of child and adolescent amputees reporting phantom limbs. DESIGN: Prospective diary study over 1 month. PARTICIPANTS: Fourteen child and adolescent amputees from 10-18 years of age who were missing a limb due to trauma (n = 12) or congenital limb deficiency (n = 2), and who had previously reported having phantom sensations and pain. MAIN OUTCOME MEASURE: Diary used to assess the occurrence of non-painful and painful phantom sensations. Items included age, sex, location and cause of amputation, past experience with stump pain and pre-amputation pain, and intensity, quality, duration, and triggers of the sensations and pains. RESULTS: Thirteen amputees reported having 104 incidents of non-painful phantom sensations with an average intensity of 4.17 (SD = 2.14) on a 0-10 rating scale. Fifty-three incidents of phantom pain with an average intensity of 6.43 (SD = 1.76) were recorded by 8 amputees. Both amputees with a congenital limb deficiency reported phantom phenomena. Girls reported more psychosocial triggers than did boys whereas boys were more likely than girls to report that they could not identify a trigger (P = 0.0001). Boys also reported a higher proportion of physical triggers than psychosocial triggers while there were no differences for girls (P = 0.0001). DISCUSSION: Child and adolescent amputees experience phantom sensations and pains on a regular basis over a 1-month period. Differences in triggers of phantom phenomena between boys and girls may be due to differences in activities, awareness, attribution, and willingness to report psychosocial triggers.

Psychological adjustment of children awaiting limb reconstruction treatment.

The psychological profiles of 53 children aged 6-17 years, with congenital and acquired limb abnormalities attending a limb reconstruction centre, were examined to determine the level of need for pretreatment psychological intervention. The profiles of two groups presenting for treatment--patients of short stature and those with other limb abnormalities--were compared with each other and with general population norms. Standardized questionnaires were administered to patients and their parents during pretreatment assessment visits to the clinic. There were few differences between the families taking part in this study and the general population norms, or between the scores of children with short stature and those with other limb abnormalities. These results may indicate that most children awaiting limb reconstructive surgery are not in need of psychological intervention other than the support routinely offered. The findings are discussed in terms of the biases which may be reflected in the referral process, possible protective effects of family environment factors and clinical support systems, and the impact of the timing of the assessments. Implications for future research are discussed.