Resilient,recovering, distressed: A longitudinal qualitative study of parent psychosocial trajectories following child critical injury

IntroductionThe psychological distress and risk of mental health problems for parents of children with critical injury is well-established. There has been little exploration, however, of parent experiences and psychosocial trajectories over time following child critical injury. To address this knowledge gap, a longitudinal qualitative study was conducted to explore parent experiences and support needs and identify parent psychosocial trajectories in the 12 months following child critical injury.MethodsSemi- structured in-depth interviews were conducted with 27 parents at three time points over a 12 month period: the immediate hospital period post-child injury, and 6 and 12 months following injury, resulting in a total of 81 interviews. Data were analysed using a longitudinal within and across-case thematic analysis of patterns emerging over time.FindingsThree parent trajectory patterns were identified: resilient trajectory where parents were temporarily disrupted by the child’s injury and hospitalisation, but recovered their mental and emotional wellbeing quickly, which was maintained over time; recovering trajectory where parents were initially disrupted at the time of injury but their mental and emotional wellbeing fluctuated over time and had not been fully restored by 12 months; and distressed trajectory where parents experienced significant psychosocial disruption due to their child’s injury and struggled to adapt and regain their wellbeing over time, remaining emotionally distressed about the circumstances and impacts of the injury on their child and family. Illustrative narratives that represent each trajectory are presented.ConclusionsThis is the first qualitative study to report the psychosocial trajectories of parents of critically injured children. Clinical application of insights provided by these trajectories can assist clinicians to use targeted strategies to help strengthen parental adaptation and prevent adverse mental health outcomes, and address families’ psychosocial support needs following child injury. Screening for parent psychological distress and post-traumatic stress disorder is needed from the time of the child’s admission, and a dedicated trauma support role can facilitate an integrated care approach for children and families with complex needs across the care continuum.     

Experiences and needs of parents of critically injured children during the acute hospital phase: A qualitative investigation

IntroductionPhysical injury is a leading cause of death and disability among children worldwide and the largest cause of paediatric hospital admission. Parents of critically injured children are at increased risk of developing mental and emotional distress in the aftermath of child injury. In the Australian context, there is limited evidence on parent experiences of child injury and hospitalisation, and minimal understanding of their support needs. The aim of this investigation was to explore parents’ experiences of having a critically injured child during the acute hospitalisation phase of injury, and to determine their support needs during this time.MethodsThis multi-centre study forms part of a larger longitudinal mixed methods study investigating the experiences, unmet needs and well-being of parents of critically injured children over the two-year period following injury. This paper describes parents’ experiences of having a child 0–13 years hospitalised with critical injury in one of four Australian paediatric hospitals. Semi-structured interviews were conducted with forty parents and transcribed verbatim. The data were managed using NVIVO 10 software and thematically analysed.FindingsForty parents (26 mothers and 14 fathers) of 30 children (14 girls and 16 boys aged 1–13 years) from three Australian States participated. The majority of children were Australian born. Three main themes with sub-themes were identified: navigating the crisis of child injury; coming to terms with the complexity of child injury; and finding ways to meet the family’s needs.ConclusionsThere is a need for targeted psychological care provision for parents of critically injured children in the acute hospital phase, including psychological first aid and addressing parental blame attribution. Parents and children would benefit from the implementation of anticipatory guidance frameworks informed by a family-centred social ecological approach to prepare them for the trauma journey and for discharge. This approach could inform care delivery throughout the child injury recovery trajectory. The development and implementation of a major trauma family support coordinator in paediatric trauma centres would make a tangible difference to the care of critically injured children and their families.     

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.     

Psychological distress in ethnic minority parents of preschool children with burns

BackgroundLiterature indicates that children from ethnic minorities are at increased risk of sustaining burns. Moreover, parents may experience more psychological distress but why this is the case is poorly investigated.MethodsA prospective study including 120 mothers and 106 fathers of preschool children, of which 23 mothers and 24 fathers had an ethnic minority background, investigated levels of parental feelings of guilt, depressive and posttraumatic stress symptoms and compared Dutch parents with parents from different ethnic backgrounds on these outcomes. A qualitative study with 46 parents, 24 Dutch and 22 from different ethnic minority backgrounds, explored how they coped with the consequences of the burns.ResultsResults revealed more symptoms of posttraumatic stress and depression in ethnic minority parents. Ethnic minority fathers also had more guilt feelings. Lower social support, medical communication hampered by language barriers, lower health literacy and passive communication styles, (aspects of) religious coping and barriers to psychosocial care may partly explain the differences.ConclusionsParents with an ethnic minority background are at risk to experience increased distress after their child’s burn injury. By exploring the aforementioned factors, health care professionals may increase the family’s wellbeing. It may provide a starting point to offer tailored help.     

Support needs of parents of hospitalised children with a burn injury: An integrative review

BackgroundGood family functioning is important to improve outcomes for children who have sustained a burn injury. While knowledge regarding parental distress is increasing, less is known about parents’ need for support during their child’s hospitalisation.AimTo systematically synthesise existing research focussing on the support needs of parents of children hospitalised with a burn injury.MethodsAn integrative review was conducted using a literature search from multiple health-related databases. Original studies reporting on support for parents during their child’s hospitalisation at a burn facility were included. A Ricoeur-inspired method was the framework used for the analysis.ResultsOf the 468 identified papers, only seven studies met the inclusion criteria. In total, 521 parents and caregivers from six different countries were represented. Key findings related to the support needs of parents, including the need for information through all stages of treatment, support needs during emotional distress, feelings of guilt and blame relating to the injury and having someone to lean on or being alone.ConclusionFindings from this review describe parental feelings of distress, guilt and blame and parental needs of information and support. Further research is needed to facilitate the development of evidence-based support programmes for parents of burn injured children that address these parental needs.     

The experience of emotional wellbeing for patients with physical injury: A qualitative follow-up study

IntroductionTraumatic physical injury is abrupt, painful, debilitating, costly and life-altering. The experience of emotional wellbeing following traumatic physical injury has not been well investigated, and the role of health services and how services can support the emotional recovery of injured patients has not been well understood. This has impacted on care provision and contributed to a lack of evidence-informed guidance for clinicians to support patients’ emotional wellbeing.AimTo explore the patient experience of emotional wellbeing following injury and to understand how injured patients manage their emotional wellbeing.MethodThe study comprises the follow-up qualitative phase of a mixed-methods explanatory sequential study. Semi-structured interviews were conducted with a purposive sample of 14 participants admitted to hospital following physical injury. Participants were purposely selected where they had reported high levels of depression, anxiety and stress on the DASS-21 at 3 and 6-months after injury. The qualitative data were analysed using thematic analysis.ResultsThree main themes were identified: experiencing the many impacts of injury; facing the emotional journey following injury; and being supported and managing the impacts of injury. Key findings were the extreme negative emotional responses experienced many months after the injury; a strong physical link between the emotional and physical aspects of health; participant reluctance to seek emotional support; a lack of emotional support provision by the health service and a subsequent need for individual and group support in order to develop resilience in the injured person. Finally, male participants who reported extreme emotional responses after injury, including suicidality, were less likely to seek help for their symptoms.ConclusionInjured patients can experience substantial negative emotional responses following injury. The lack of support provided by health services to injured patients identified highlights the importance of in-hospital screening for emotional wellbeing and follow-up post-discharge, and a support network for patients to reduce the negative impacts of injury on their mental health. There is a need for anticipatory guidance frameworks for clinicians.     

At home parent-administered dressing changes in paediatric burns aftercare: Interviews on parents’ experiences of treatment

ObjectivePaediatric burn injuries present physical and psychosocial effects for children and their parents, including disruption to family life. Some burns services in the UK enable parents to administer dressing changes at home to reduce the number of hospital visits. To date, there is no research on parents’ experiences of administering dressing changes. The aim of this study was to describe parents’ experiences of administering dressing changes in paediatric burns aftercare.MethodsSemi-structured research interviews were conducted with a purposive sample of parents recruited from a paediatric burns centre in the UK. The interview addressed the initial offer of at-home dressing changes by clinicians; parental decision-making in relation to dressing changes; training and support received; and the experience of administering dressing changes, including practical and emotional considerations. Thematic analysis of the data was informed by the framework approach, including associative analysis using demographic and clinical characteristics.ResultsSeventeen participants were interviewed. Three themes of parents’ experiences of administering dressing changes were identified including (1) Parental Identity concerning the newly undertaken responsibility and the impact on the parental role; (2) Challenges, physical or emotional, confronted or lessened by administering dressing changes; and (3) Reassurance provided by healthcare professionals and others to support parents to adopt and maintain parent-administered dressing changes.ConclusionThe qualitative data reported here indicates that parents want to be involved in their child’s care by administering dressing changes at home, provided they receive sufficient reassurance that they are able to manage the severity of their child’s burn. Parents’ concerns about the effectiveness of their dressing changes lacks empirical basis, and this study provides preliminary data to support the development and evaluation of best practice guidance for parent-administered dressing changes in paediatric burns aftercare.     

Parents’ experiences of feeding children born with oesophageal atresia/tracheo-oesophageal fistula

BackgroundFeeding difficulties are widely acknowledged following oesophageal atresia/tracheo-oesophageal fistula repair. However, little is understood about the nature and severity of these difficulties. This study explored feeding in children with oesophageal atresia/tracheo-oesophageal fistula from the parent perspective.MethodsIn collaboration with a patient support group, data were collected using a research-specific online discussion forum. Thematic analysis was used to code the data and identify themes.ResultsOne hundred and twenty-seven parents registered for the online forum, of whom 83 (65%) provided demographic data. Seventy-four (89%) of responders were mothers, 75 (90%) were of white ethnicity, 65 (78%) were from the UK. Six key themes were identified: feeding is a traumatic experience, feeding my child is scary, feeding is isolating and filled with uncertainty, feeding outside of the home is difficult, feeding associated emotions, developing coping strategies. Parents described features of medical, nutritional, feeding skill and psychosocial dysfunction across all stages of eating/drinking development. They described how their child's feeding difficulties had an impacted their own well-being. An interactional model of feeding difficulties in OA/TOF is proposed.ConclusionsExploring parent experiences provides rich data from which to expand understanding of the complex nature of feeding difficulties in OA/TOF. Feeding should be viewed as a dyadic process, occurring within a family system. Intervention for feeding difficulties should be family-centred, addressing parental anxiety, trauma and uncertainty, as well as the child's underlying medical/surgical needs to optimise outcome. Further study of clinical correlates with parental experience is required.Level of evidenceIV (non-experimental, qualitative)     

Parental coping following childhood acquired brain injury

Primary objective: To examine parental coping following an acquired brain injury of their child, the relationship between maternal and paternal coping, and the extent to which social support and family environment affect parental coping.

Research design: A cross-sectional design was used.

Methods and procedures: Parents (n = 30) of children with acquired brain injury provided relevant demographic data and completed questionnaires investigating coping, social support and perceptions of family environment.

Main outcomes and results: Perception-focused coping strategies were used most often by parents. Mothers had a more extensive repertoire than fathers, and the relationship between maternal and paternal coping appeared to be complementary. Relationships were found between emotion-focused coping and instrumental support (r = 0.39) and perception-focused coping and family cohesion (r = 0.37).

Conclusions: Recognizing parental coping styles, enhancing the development of positive strategies, and underscoring the importance of social support and the family environment will assist parents to cope positively with their child's acquired brain injury.     

Early disease surveillance in young children with cystic fibrosis: A qualitative analysis of parent experiences

Background. Sensitive measures of early lung disease are being integrated into therapeutic trials and clinical practice in cystic fibrosis (CF). The impact of early disease surveillance (EDS) using these novel and often intensive techniques on young children and their families is not well researched.Methods. The Australian Respiratory Early Surveillance Team for Cystic Fibrosis (AREST CF) has operated a combined clinical and research early disease surveillance program, based around annual chest CT scan, bronchoscopy and lung function from newborn screening diagnosis until age 6 years, for over two-decades. To explore parental experiences of EDS in their child, a qualitative study was conducted using audio-recorded, semi-structured interviews in n=46 mothers and n=21 fathers of children (aged 3-months to six years) attending CF centres in Perth and Melbourne, Australia. Themes were developed iteratively using thematic analysis and assessed for validity and confirmability.Results. Parents’ experiences were positive overall; affording a sense of control over CF, disease knowledge, and belief that EDS was in the best interests of their child. Challenges included poor understanding about EDS measures leading to anxiety and distress, self-blame surrounding adverse findings, and emotional burden of surveillance visits. Tailored information regarding the practical and psychosocial aspects of EDS were endorsed.Conclusion. While experiences were generally positive there is need for information and psychosocial support for parents to mitigate anxiety and develop positive coping strategies surrounding surveillance procedures and results. Managing expectations regarding risks and benefits of disease surveillance in clinical and research settings are important aspects of care.     

Children subjected to cardiac surgery for congenital heart disease. Part 2 - parental emotional experiences

Parents experience considerable distress when their children are subjected to cardiac surgery. This study investigated their psychological and emotional experiences. As part of a prospective study reviewing the emotional and psychological outcomes of children aged 2-12 years subjected to cardiac surgery, that age group being chosen to allow for objective testing following infancy and before adolescence, their parents were assessed prior to and 12-50 months following the surgery. The measures reviewed their mental health, locus of control, family functioning and social support. There were 39 children. Most of the parental information was obtained from the mothers, who reported increased anxiety, and a tendency to attribute events to luck and/or chance greater than published norms, irrespective of the cardiac anomaly, whether the surgery was 'curative', or if further surgery was required. At follow-up, their ratings approximated to norms, except for a continued perception that life events were a function of fate and beyond one's control. The results confirmed that a substantial increase in the emotional distress of mothers at the time of surgery essentially resolved by 12 months or later. In contrast, they still seemed not to feel in 'control' when reviewed on follow-up.     

Issues and concerns of family members of burn patients: A scoping review

IntroductionThe issues and concerns that emerge in the families of burn patients have received minimal attention.ObjectiveTo map out what is known about the challenges facing the family members of burn patients.MethodsThe review followed the PRISMA Extension guidelines for scoping reviews and the review approach by Arksey and O’Malley to synthesize the available evidence. Twenty-six (26) papers from various database searches were identified and included in the review. The citation retrieval and retention methods are reported in a PRISMA statement.ResultsAlthough most of the studies included parents (n = 21), the evidence suggests that the shared concerns of family members include taking on new roles, and psychosocial and financial issues. Uniquely, parents had to endure blame, shame and guilt; partners/spouses were faced with difficulties in re-establishing an emotional connection with the patient; siblings simultaneously expressed jealousy and feelings of being outsiders; and children with a burn parent had to deal with feelings of exclusion from the care delivery process. Aside from these individuals, friends, neighbours and in-laws may also assume a caregiving role, with grandparents playing a supporting role. Family members are unprepared for their roles, as they are forced into them suddenly. Although distress may occur among family members, its determinants, severity, pattern and recovery process remain unclear.ConclusionA burn is a family injury that creates the need for family-centred care. Future studies need to explore the nature of psychological distress, family members’ recovery pathways, and how family members can prepare for their roles in the period after discharge.     

A qualitative study of physiotherapy education for parents of toddlers with cystic fibrosis

BackgroundEducation and daily physiotherapy are often highlighted as difficult and stressful tasks for parents of young children with cystic fibrosis. This study aimed to identify factors that impair the delivery and retention of physiotherapy education for parents of these children and factors that impair effective physiotherapy treatment in the home environment.MethodsA focus group of physiotherapists and six semi-structured interviews of parents with children with cystic fibrosis were conducted. The qualitative method of Grounded Theory was used to analyse the information and develop key themes.ResultsMajor emergent themes were ‘transitions’, ‘psychological distress’ and ‘connectedness’. Factors influencing the effectiveness of parental physiotherapy education include the large volumes of information, appropriateness of educational resources and timing of education. Factors influencing home physiotherapy management for toddlers include mastering techniques, the transition from infant to toddler and time management.ConclusionPhysiotherapy education and management were key causes of psychological distress for parents. This research suggests that significant targeted development of educational resources is warranted, in conjunction with dedicated and ongoing formal psychosocial support for parents.     

Association of Posttraumatic Growth and Illness‐Related Burden With Psychosocial Factors of Patient,Family, and Provider in Pediatric Cancer Survivors

Research has indicated that childhood cancer may lead to posttraumatic growth (PTG), given cancer's association with posttraumatic stress. PTG may be associated with family/home and health care dynamics, as well as parental resilience, distress, and coping. This cross‐sectional study investigated the associations of psychosocial factors of the patient, family, and health care team with PTG and illness‐related burden (IRB) in childhood cancer survivors. The sample comprised 61 children and adolescents (7–18 years of age), their parents, and their nurses. Respondents completed their assessment an average of 1.73 years after the end of treatment for the child's disease, which was either leukemia, a solid tumor, or lymphoma. Regression analyses showed that PTG was positively associated with the patients’ posttraumatic stress symptoms. It was also positively associated with the parents’ religious coping, and with measures of stronger family and oncologist relationships (R² = .32). IRB was positively associated with patient‐reported posttraumatic stress symptoms, negatively associated with the nurse's trust in the family, and positively associated with parent‐reported mental distress, lower family socioeconomic status, and female gender (R² = .53). There was no significant association with parenting style or parent‐reported posttraumatic stress symptoms in the child. The findings suggested that the young cancer patient's psychosocial and resource milieu (e.g., financial) may be instrumental in PTG and IRB. Psychosocial interventions with high‐risk families and their health care teams could increase growth and reduce burden.     

A beautiful struggle: Parent-perceived impact of short bowel syndrome on child and family wellbeing

BackgroundDespite considerable improvements in outcomes for children with short bowel syndrome (SBS), many clinicians remain pessimistic about long-term quality of life (QoL) for this population.MethodsThe validated FaMM tool was used to measure parent-perceived impact of the child's condition on child and family life. Partnered disease-specific survey questions relevant to child's overall wellbeing and family function were additionally completed and reported. The cross-sectional surveys were distributed to a convenience sample of parents of children with SBS. Child and family wellbeing were described and compared across child age group and involvement of an intestinal rehabilitation program (IRP). Multivariate regression analyses investigated associations between outcomes and IRP management. Open-ended responses were analyzed to investigate perceived impact of the child's SBS on the parent.ResultsSeventeen parents completed both surveys; 71% perceived child QoL as higher today than what they had originally been told to expect. Child daily life and family difficulty scores suggest parents perceived both to be fairly “normal”. While acknowledging effort invested in condition management, parents perceived high competence in managing their child's condition; 56% perceived personal growth resulting from their child's SBS journey. IRP management was associated with better child daily life (4.11, p = 0.015), family difficulty (-4.85, p = 0.048), and family management ability (4.28, p = 0.014) scores.ConclusionsMany parents perceive child and family life with SBS to be fairly “normal”, manage their child's care with great competence, and report personal growth because of their child's SBS journey. Additional research inclusive of diverse patient and parent backgrounds is warranted.Level of evidence: prognosis study; Level IV     

Parent–child and spousal relationships in families with a young child with end-stage renal disease

Background

End-stage renal disease (ESRD) leads to the need for dialysis and renal transplantation (Tx). Peritoneal dialysis (PD) of young children is normally performed at home by the parents and affects the whole family. We studied the coping of families with a young child with ESRD by interviewing the parents of 19 children.

Methods

The spousal and parent–child relationships were assessed by using the Psychosocial Assessment of Childhood Experiences (PACE) and the Brief Measure of Expressed Emotion, respectively. A control group of 22 families with a healthy child was used for the parent–child relationship evaluation.

Results

The spousal relationship at the start of PD was good or fairly good in most of the families and remained good in half of the families following renal Tx. Lack of support from close relatives and renal Tx were associated with a poorer relationship quality. Almost all parents expressed much or fairly much emotional warmth towards the child throughout the study, but there was a trend towards increased criticism over time. No differences in the degree of expressed warmth or criticism were noted between the index parents and controls.

Conclusions

Overall, the study families appeared to cope well despite the serious illness of their child and the demands of the treatments.     

Parental presence or absence during paediatric burn wound care procedures

Aim

Differing views on benefits and disadvantages of parental presence during their child’s wound care after burn injury leave the topic surrounded by controversies. This study aimed to describe and explain parents’ experiences of their presence or absence during wound care.