Intolerance of Uncertainty in Pediatric Chronic Pain: Dyadic Relationships Between Youth and Parents

The current study used a dyadic analytic approach (actor-partner interdependence models) to assess the stability and interrelationships of intolerance of uncertainty (IU) among a cohort of youth with chronic pain and their parents (n = 156 dyads). Relationships between parent and youth IU, parent and youth pain interference, and parent and youth internalizing mental health symptoms were examined. At baseline and follow-up, youth and parents completed psychometrically-sound questionnaires to assess their respective IU, pain characteristics, and clinical outcomes (pain interference, anxiety, depressive, and posttraumatic stress symptoms). Our findings support the construct stability of IU over time, as well as intrapersonal (ie, actor) effects of IU on follow-up youth pain interference and mental health symptoms and parents’ mental health symptoms (but not parent pain interference). There were no interpersonal (ie, partner) effects over time between youth and parent IU or between youth and parent IU and pain interference or mental health symptoms. These findings align with previous research evidencing IU as a transdiagnostic risk factor for a range of mental health concerns and extend previous findings by showing the stability of parent and youth IU over time and its potential predictive relevance to outcomes in a clinical sample of youth with chronic pain.PerspectiveThis article presents dyadic analyses assessing intrapersonal and interpersonal associations between intolerance of uncertainty (IU) and pain and mental health symptoms in youth with chronic pain and their parents. Analyses evidenced short-term construct stability of IU and intrapersonal (but not interpersonal) effects of IU on pain and mental health symptoms.     

ICF-based functional components and contextual factors as correlates of perceived quality of life for youth with chronic conditions

Abstract

Purpose: To explore International Classification of Functioning, Disability and Health (ICF)-based functional components and contextual factors associated with perceived quality of life (QOL) for youth with chronic conditions from the perspective of youth and parents. Method: Baseline data were obtained from a longitudinal study examining predictors of changes in perceived QOL for youth with chronic conditions. 439 youth aged 11–17 (and one of their parents) completed a questionnaire. Standardized tools were used to measure youth functioning, contextual factors and perceived QOL. Multivariate linear regression analyses, controlling for socio-demographic and health information, were conducted to explore correlations among youth functioning/contextual factors and youth and parent perceptions of youth QOL. Results: Significant (p?≤?0.05) negative correlates with both youth and parent perceptions of youth QOL included pain/other physical symptoms and emotional symptoms. Significant factors positively correlated with youth and parent perceptions of youth QOL included school productivity and spirituality. Other significant positive correlates of youth perspectives were family social support and school belongingness/safety. Family functioning was positively correlated, and youth social anxiety and environmental barriers were negatively correlated, with parent perceptions of youth QOL. Conclusions: This study provides preliminary evidence of factors upon which services aimed at improving perceived QOL of youth with chronic conditions could be based.

• Implications for Rehabilitation

• This study supports the utility of clinicians assessing the QOL of youth with chronic conditions in terms of youths’ and their families’ perspectives.

• This is the first study to identify key factors that impact perceived QOL at one point in time across a group of youth with chronic conditions, offering clinicians a main starting-point for considering youths’ strengths and needs and the supportiveness of the environment.

• Findings suggest youth and families would benefit from the availability of services that encompass the full scope of the ICF.

     

In their own words: early childhood asthma and parents’ experiences of the diagnostic process

Scand J Caring Sci; 2010; 24; 299–306
In their own words: early childhood asthma and parents’ experiences of the diagnostic process This paper explores the experiences of parents of asthmatic children in the period leading up to their child receiving a formal medical diagnosis. To what extent did the parents face difficulties in obtaining this diagnosis? How did they describe their encounters with the healthcare professionals? In particular, did parents portray themselves as passive and dominated or active and participating during the prediagnosis phase? In‐depth interviews with individuals and participants in a focus group exposed the prediagnosis phase as a distinct and memorable phase of the disease, often recalled as a period of frustration and uncertainty. Results show that instead of accepting the authority of the professional, parents eventually acquire knowledge elsewhere about the diagnosis and the healthcare system, and act according to that knowledge. As a fundamental uncertainty appears involved in the diagnostic process, parents dealing with this uncertainty use a number of strategies to gain control of the process of alleviating their child’s disease. The paper discusses the status of the information that the researcher obtained from parents. Lay narratives cannot be treated as simple reports of an external reality. As the parental role is rooted in normative conceptions about what constitutes ‘responsible parenthood’, information given to the observer may therefore be influenced by the informants’ concern with their appearance as moral persons or adequate parents. Although a research strategy based on one‐sided interviews has limitations, using parents as a source of information offers a rare glimpse into the realities of patient‐physician encounters.     

Living with type 1 diabetes: perceptions of children and their parents

Aim. To explore and describe the experiences of children and their parents living with type 1 diabetes mellitus from diagnosis onwards. Background. Type 1 diabetes mellitus is a psychologically and behaviourally demanding chronic condition that necessitates children and their parents taking extensive responsibility for managing the condition. Diabetes management involves maintaining a highly effective level of treatment to reduce the risks of short‐ and long‐term complications. Treatment is carried out in the context of daily life, but little research evidence is available about this experience. Design. A phenomenological study using conversational interview. Method. A purposive sample of 10 children, (aged 4–17) living with type 1 diabetes mellitus and their parents participated in this study. Participants were from different ethnic backgrounds and at differing lengths of time since diagnosis. Data were generated through conversational interviews and analysed using thematic analysis. Results. The central theme that was identified was ‘normal’. This was underpinned by four subthemes: transition, attachment, loss and meaning. The notion of ‘normal’ is dominant in the lives of these children and their parents because diabetes not only makes these families different, but also makes their pursuit of ‘normal’ more visible. Conclusion. These findings highlight that, despite different cultures, ages and lengths of time since diagnosis, families living with diabetes share very similar experiences. Understanding how children and parents create meaning and how this meaning influences their actual and potential health problems, is important if the provision of healthcare is to be effective in meeting their needs. Relevance to clinical practice. Conducting child‐ and parent‐centred qualitative research allows exploration of the perceptions and understanding of type 1 diabetes mellitus and the meaning ascribed by children and their parents who live with the condition. Diabetes is a lifelong, life‐threatening condition that has a significant impact on children’s and parents’ lives. Developing a deeper understanding of their lives and experiences will enable the delivery of nursing care to meet their specific needs.     

Parents' worries about recurrent abdominal pain in children.

Recurrent abdominal pain is a common childhood disorder characterized by multiple episodes of stomachaches severe enough to interrupt daily activities. Recurrent abdominal pain is a difficult diagnosis for parents, children, and clinicians since there is no definitive cause of the symptoms. Research has shown recurrent abdominal pain is at least partly learned through social modeling. The purpose of this study was to understand parental worries and fears of recurrent abdominal pain that explain parental reinforcement of illness behavior. In-depth interviews were held with 15 parents of children diagnosed with recurrent abdominal pain. Parental cognitions were identified and thematically grouped. Two independent judges coded the interviews for the categories (88% inter-judge reliability). Six major categories of worries were identified. Parental cognitions about recurrent abdominal pain revolved around the fear of a disease and a desire for diagnosis and effective treatment. Many parents stated they felt helpless to know how to deal with their child's suffering. These fears and worries may explain why parents reinforce illness behavior by showing empathy for a supposedly sick child. The findings also identified areas of possible miscommunications between clinicians and parents. This study adds to our understanding of parents' view on recurrent abdominal pain and gives us tools to address cognitions that can perpetuate symptoms in children.     

Insights from parents of a child with leukaemia and healthcare professionals about sharing illness and treatment information: A qualitative research study

BackgroundMany parents report a strong desire to take on information-giving roles, and believe they are best positioned to discuss their child’s illness with their child. Healthcare professionals have a supporting role to reduce the burden on parents who feel responsible for conveying information to their child and other family members.ObjectiveTo examine parents’ and healthcare professionals’ perceptions of roles in receiving and communicating information when a child is diagnosed with and treated for acute lymphoblastic leukaemia.Design, setting and participantsWe used the principles of a grounded theory approach. This was a single site study, recruiting from a principal children’s cancer treatment centre in the United Kingdom. The sample included parents of children receiving and completed treatment for acute lymphoblastic leukaemia (n = 28), and healthcare professionals (n = 34).MethodsMethods included individual interviews, face-to-face and telephone, focus groups, and an online forum.FindingsCommunication ‘touch points’ are many over the course of a child’s cancer journey. We describe often ‘mismatched’ communication encounters where those seeking information and those providing information have different goals. Healthcare professionals in the encounter have expertise at the outset while parents have less expertise, but this expertise grows over time and this can increase the perceptions of this ‘mismatch’ and create different challenges.ConclusionsConsidered in the context of middle range transition theory, we might suggest that parental foreground (seeking information directly) and background (passive actors) roles are the result of differing levels of uncertainty, and depend on the situation and preferences and child and family needs that may present differently over time in different contexts. Our work contributes to the emerging consensus that communication is more than a core set of skills that healthcare professionals just need to learn: clear specifications of mutual roles, responsibilities and a shared understanding of goals is also essential.     

Parents with psychosis and their children: experiences of Beardslee’s intervention

To meet children’s needs for information and support when a parent has a mental illness, Beardslee’s family intervention was implemented in Swedish psychosis care. The present study aimed to gain understanding of how parents’ with psychosis and their children experienced having taken part in Beardslee’s family intervention. The study followed COREQ guidelines. Semi‐structured interviews were conducted with 15 participants (8 parents with psychosis and 7 children) who had participated in the family intervention. Data were analysed with content analysis. Results showed that the parents perceived that the intervention had contributed to improved illness knowledge, communication, and understanding in the family. They also appreciated receiving support in finding an age‐adapted way of explaining their illness, but asked for structured follow‐ups in order to maintain communication. However, comparing parents’ and children’s interviews led to discrepancies in perceptions of the overall benefits of the intervention. In conclusion, parents with psychosis need continual support in talking to their children about their illness. Furthermore, discrepancies between parents’ and children’s interviews show the importance of multi‐perspective data collection when studying intervention effects.     

Parent perceptions of child vulnerability are associated with functioning and health care use in children with chronic pain

ContextThe extent to which parent variables are associated with the level of disability experienced by children with persistent pain has been an area of increasing research.ObjectivesTo evaluate the extent to which parent perceptions of their child’s vulnerability are associated with functioning and health care utilization among children with persistent pain. We also evaluated whether perceptions of child vulnerability contribute to an indirect relationship between parent distress and child functioning and/or child health care utilization.MethodsThe study sample comprised 87 patients aged 6–18 years and a parent attending a chronic pain clinic. Children completed questionnaires on functional limitations, and parents completed questionnaires on parent distress, perceptions of child vulnerability, and extent of the child’s pain-related health care utilization. Hierarchical regression and bootstrapping mediation analyses were used to test study hypotheses.ResultsPerceptions of child vulnerability were found to be clinically elevated in nearly half (46%) of parents/caregivers, and average child functional ability for the sample was substantially lower than healthy norms. Parent perceptions of greater child vulnerability were significantly associated with poorer child functioning and more child pain-related health care utilization regardless of child age, sex, and duration of persistent pain. Parent distress was found to be indirectly related to child health care utilization through parent perceptions of child vulnerability but directly related to child functioning.ConclusionParent perceptions of child vulnerability appear important for understanding levels of child functional limitations and health care utilization among children with chronic pain.     

A life shaped by pain: women and endometriosis

Aims and objectives. The research aim was to explore women's perceptions of living with endometriosis, its effects on their lives and the strategies used to manage their disease. Background. Symptomatic endometriosis significantly affects women's quality of life. Characteristically the condition causes severe pain and has a negative impact on the ability to work, on family relationships and self‐esteem. There has been little discussion about women's experience of endometriosis in nursing literature. Design. A qualitative research design informed by feminist research principles was chosen for this project. Methods. Eighteen women agreed to take part in the research. The individual, audio taped interviews were semi‐structured and interactive. The interviews were analysed using a thematic analysis approach. Results. The dominant feature of data from the interviews was the experience of severe and chronic pain impacting on all aspects of life. Analysis related to pain resulted in four themes: manifestations of pain, the pain trajectory, intractable pain and controlling pain. Conclusion. The diagnostic process typically took 5–10 years indicating that primary health care practitioners need higher levels of ‘suspicion’ for this condition. Case studies and problem‐based scenarios focusing on endometriosis in health professional education programmes would enhance diagnostic skills and knowledge development. No formal pain management follow up after diagnosis and treatment meant women actively sought information from other sources as they made major lifestyle changes in the areas of activity and nutrition. Pain management services specifically for women with endometriosis would provide much needed support with this neglected aspect of the disease. Relevance to clinical practice. This is a fertile area for the development of the Nurse Practitioner role which, also drawing on the considerable collective expertise of women with endometriosis, could provide significant information and support for women as they manage this highly complex condition.     

Adolescent chronic pain‐related functioning: Concordance and discordance of mother‐proxy and self‐report ratings

Accurate assessment of adolescent chronic pain is critical to guiding treatment decisions. Given the multifaceted role of the parents in their children's lives, parents, and patients often each provide reports of adolescents’ pain‐related functioning. In order to make sense of these data, clinicians should be aware of patterns of discordance in perspectives. In this study, we aimed to examine concordance and discordance in adolescents’ self‐report and mothers’ proxy‐report of adolescents’ chronic pain‐related functioning. Results suggested that although there were high correlations between the raters, there were also significant discordance with mothers rating their adolescents as having greater disability in social functioning, depression, and pain‐specific anxiety. Analyses suggested that high pain and being older predicted greater concordance in ratings. Findings suggest that mothers and adolescents tended to have greater concordance for more observable and shared disability (e.g., physical disability, family functioning) and greater discordance for internal experiences (e.g., pain‐specific anxiety, depression). Awareness of these patterns of concordance and discordance should help clinicians in interpreting mothers’ proxy‐reports and adolescents’ self‐reports of chronic pain‐related functioning.     

Supporting bereaved parents: a phenomenological study of a telephone intervention programme in a paediatric oncology unit

Aims and objectives. This study sought to discover bereaved parents’ perspectives and experiences of a nurse‐led, ward‐based, telephone support programme in a children’s oncology unit. Background. Parental grief is especially intense and long‐lasting, and many parents can experience serious psychological problems. The oncology team learned that some parents felt ‘forgotten’ or ‘abandoned’ following their child’s death and addressed this concern by initiating and subsequently evaluating a telephone bereavement support programme. Design. An interpretive phenomenological investigation of the experiences of six parents who participated in the programme. Methods. Parents shared their experiences and perceptions of the programme in individual interviews. Interpretive phenomenology and thematic analysis guided the interviews’ interpretation to ascertain both the parents’ experiences of the programme and their understandings of everyday clinical terms such as ‘support’ or ‘reassurance’. Results. Parents found the programme supportive, especially valuing ongoing contact with a nurse who ‘knew them’. Telephone contact was preferred to visiting the hospital, which brought back painful memories. Calls were important elements in helping parents create meaning and memory around their deceased child. Conclusions. Regular telephone contact over an agreed period from a familiar member of the child’s treating team can create a more positive and supportive bereavement experience for parents in the year following their child’s death. The specific findings are discussed in the context of the death of a child as a crisis of meaning. Relevance to clinical practice. Clinical nurses are ideally placed to use existing close relationships to extend care and support to bereaved parents. This study shows how nurses can identify service gaps, work with interdisciplinary team colleagues to initiate appropriate actions and participate in the essential evaluation subsequently required.     

Psychosocial Predictors of Acute and Chronic Pain in Adolescents Undergoing Major Musculoskeletal Surgery

Acute and chronic pain delay recovery and impair outcomes after major pediatric surgery. Understanding unique risk factors for acute and chronic pain is critical to developing effective treatments for youth at risk. We aimed to identify adolescent and family psychosocial predictors of acute and chronic postsurgical pain after major surgery in adolescents. Participants included 119 youth age 10 to 18 years (M_age = 14.9; 78.2% white) undergoing major musculoskeletal surgery and their parents. Participants completed presurgery baseline questionnaires, with youth reporting on baseline pain, anxiety, depression, insomnia and sleep quality, and parents reporting on parental catastrophizing and family functioning. At baseline, 2-week, and 4-month postsurgery, youth completed 7 days of daily pain diaries and reported on health-related quality of life. Sequential logistic regression models examined presurgery predictors of acute and chronic postsurgical pain, defined as significant pain with impairment in health-related quality of life. Acute pain was experienced by 27.2% of youth at 2 weeks, while 19.8% of youth met criteria for chronic pain at 4 months. Baseline pain predicted acute pain (odds ratio [OR] = 1.96; 95% confidence interval [CI] = 1.32–2.90), while depressive symptoms (OR = 1.22; 95%CI = 1.01–1.47), and sleep quality (OR = 0.26; 95%CI = 0.08–0.83) predicted chronic pain. Tailored interventions need to be developed and incorporated into perioperative care to address risk factors for acute and chronic pain.PerspectiveLongitudinal results demonstrate adolescents’ presurgery pain severity predicts acute postsurgical pain, while depressive symptoms and poor sleep quality predict chronic postsurgical pain. Tailored interventions should address separate risk factors for acute and chronic pain after adolescent surgery.     

Feelings of Clinician-Patient Similarity and Trust Influence Pain: Evidence From Simulated Clinical Interactions

Pain is influenced by many factors other than external sources of tissue damage. Among these, the clinician-patient relationship is particularly important for pain diagnosis and treatment. However, the effects of the clinician-patient relationship on pain remain underexamined. We tested the hypothesis that patients who believe they share core beliefs and values with their clinician will report less pain than patients who do not. We also measured feelings of perceived clinician-patient similarity and trust to see if these interpersonal factors influenced pain. We did so by experimentally manipulating perceptions of similarity between participants playing the role of clinicians and participants playing the role of patients in simulated clinical interactions. Participants were placed in 2 groups on the basis of their responses to a questionnaire about their personal beliefs and values, and painful thermal stimulation was used as an analog of a painful medical procedure. We found that patients reported feeling more similarity and trust toward their clinician when they were paired with clinicians from their own group. In turn, patients' positive feelings of similarity and trust toward their clinicians—but not clinicians' feelings toward patients or whether the clinician and patient were from the same group—predicted lower pain ratings. Finally, the most anxious patients exhibited the strongest relationship between their feelings about their clinicians and their pain report. These findings increase our understanding of context-driven pain modulation and suggest that interventions aimed at increasing patients’ feelings of similarity to and trust in health care providers may help reduce the pain experienced during medical care.

Pain,mental health and healthcare utilization: Impact of the COVID-19 pandemic on youth with chronic pain,parents and siblings

Background

Paediatric chronic pain was a public health emergency before the novel coronavirus (COVID-19) pandemic, and this problem is predicted to escalate. Pain tends to occur intergenerationally in families, and youth with chronic pain and their parents have high rates of mental health issues, which can further exacerbate pain. Siblings of youth with chronic pain have been largely overlooked in research, as well as the impact of the pandemic on posttraumatic stress disorder (PTSD) symptoms and healthcare utilization.

Methods

This cross-sectional study examined pain, mental health and healthcare utilization in three groups: youth with chronic pain (n = 357), parents of youth with chronic pain (n = 233) and siblings of youth with chronic pain (n = 156) during the COVID-19 pandemic in Canada.

Results

More so than with pain symptoms, the results revealed high levels of mental health symptoms (i.e. anxiety, depressive, and PTSD), particularly in individuals more personally impacted by the pandemic. The largest effect was seen on PTSD symptoms for all groups. For parents with chronic pain, greater personal COVID-19 impact was related to worse pain interference. Reported rates of healthcare utilization were strikingly high, with youth with chronic pain, parents (reporting on behalf of their children with chronic pain), and siblings of youth with chronic pain reporting that most consultations were due to pain.

Conclusions

Longitudinal research assessing these outcomes across continued waves of the pandemic is needed to ensure timely, tailored and equitable access to pain and mental health assessment and treatment.

Significance

This study examined pain, mental health, substance use and healthcare utilization in youth with chronic pain, siblings and parents during the COVID-19 pandemic. Greater personal impact of the pandemic was not largely associated with poorer pain outcomes; however, it was associated with mental health, with the largest effect on PTSD symptoms. The high rates and significant association of COVID-19 impact with PTSD symptoms underscore the importance of including PTSD assessment as part of routine screening practices in pain clinics.     

Diagnostic uncertainty and recall bias in chronic low back pain

Patients’ beliefs about the origin of their pain and their cognitive processing of pain-related information have both been shown to be associated with poorer prognosis in low back pain (LBP), but the relationship between specific beliefs and specific cognitive processes is not known. The aim of this study was to examine the relationship between diagnostic uncertainty and recall bias in 2 groups of chronic LBP patients, those who were certain about their diagnosis and those who believed that their pain was due to an undiagnosed problem. Patients (N = 68) endorsed and subsequently recalled pain, illness, depression, and neutral stimuli. They also provided measures of pain, diagnostic status, mood, and disability. Both groups exhibited a recall bias for pain stimuli, but only the group with diagnostic uncertainty also displayed a recall bias for illness-related stimuli. This bias remained after controlling for depression and disability. Sensitivity analyses using grouping by diagnosis/explanation received supported these findings. Higher levels of depression and disability were found in the group with diagnostic uncertainty, but levels of pain intensity did not differ between the groups. Although the methodology does not provide information on causality, the results provide evidence for a relationship between diagnostic uncertainty and recall bias for negative health-related stimuli in chronic LBP patients.     

Feeling the Pressure to Be Perfect: Effect on Pain-Related Distress and Dysfunction in Youth With Chronic Pain

Despite clinical observation of perfectionistic tendencies among youth with chronic pain and their parents as well as established relationships between perfectionism and functional somatic symptoms in adults and youth, no research in the pediatric pain literature has examined perfectionism. This study explored the role of various types of youth and parent perfectionism on youth and parent pain-related distress and behavior and youth pain-related dysfunction. At admission, 239 parent–child pairs from outpatient and day-treatment rehabilitation settings completed several questionnaires assessing perfectionism, pain-related distress, and pain-related dysfunction. Bivariate correlations indicated that socially prescribed perfectionism in youth and parents was linked to youth pain duration, parent and youth pain-related distress and behavior, and youth somatization. Indirect relations showed that youth socially prescribed perfectionism was the only form of perfectionism directly associated with youth somatization whereas all forms of youth perfectionism were indirectly associated with somatization and functional disability through increases in youth pain-related fear and catastrophizing. Additionally, socially prescribed perfectionism was the only type of parent perfectionism linked to youth pain-related dysfunction (somatization, functional disability) through its association with youth pain-related fear. Findings support clinical observations that parent and youth perfectionism is a psychosocial factor that should be targeted in pediatric chronic pain treatment.