A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments
Humans; Child; child; Adolescent; Quality of Life; human; inflammatory bowel disease; quality of life; Family; chronic pain; social support; family; child parent relation; social work; prognosis; systematic review; sibling; Chronic Pain; Analgesics Opioid; ethnography; Anthropology Cultural; personal experience; cultural anthropology; outcome assessment; health care personnel; wellbeing; health service; disease severity; adolescent; social isolation; headache; analgesia; pediatric patient; abdominal pain; social care; peer group; patient-reported outcome; pain assessment; Review; racism; narcotic analgesic agent; pain severity; fibromyalgia; complex regional pain syndrome; endometriosis; family life; juvenile rheumatoid arthritis; migraine; musculoskeletal pain
Background: Chronic non-cancer pain in childhood is widespread, affecting 20% to 35% of children and young people worldwide. For a sizeable number of children, chronic non-cancer pain has considerable negative impacts on their lives and quality of life, and leads to increased use of healthcare services and medication. In many countries, there are few services for managing children’s chronic non-cancer pain, with many services being inadequate. Fourteen Cochrane Reviews assessing the effects of pharmacological, psychological, psychosocial, dietary or physical activity interventions for managing children’s chronic non-cancer pain identified a lack of high-quality evidence to inform pain management. To design and deliver services and interventions that meet the needs of patients and their families, we need to understand how children with chronic non-cancer pain and their families experience pain, their views of services and treatments for chronic pain, and which outcomes are important to them. Objectives: 1. To synthesise qualitative studies that examine the experiences and perceptions of children with chronic non-cancer pain and their families regarding chronic non-cancer pain, treatments and services to inform the design and delivery of health and social care services, interventions and future research. 2. To explore whether our review findings help to explain the results of Cochrane Reviews of intervention effects of treatments for children's chronic non-cancer pain. 3. To determine if programme theories and outcomes of interventions match children and their families’ views of desired treatments and outcomes. 4. To use our findings to inform the selection and design of patient-reported outcome measures for use in chronic non-cancer pain studies and interventions and care provision to children and their families. The review questions are:. 1. How do children with chronic non-cancer pain and their families conceptualise chronic pain?. 2. How do children with chronic non-cancer pain and their families live with chronic pain?. 3. What do children with chronic non-cancer pain and their families think of how health and social care services respond to and manage their child’s chronic pain?. 4. What do children with chronic non-cancer pain and their families conceptualise as ‘good’ chronic pain management and what do they want to achieve from chronic pain management interventions and services?. Search methods: Review strategy: we comprehensively searched 12 bibliographic databases including MEDLINE, CINAHL, PsycInfo and grey literature sources, and conducted supplementary searches in 2020. We updated the database searches in September 2022. Selection criteria: To identify published and unpublished qualitative research with children aged 3 months to 18 years with chronic non-cancer pain and their families focusing on their perceptions, experiences and views of chronic pain, services and treatments. The final inclusion criteria were agreed with a patient and public involvement group of children and young people with chronic non-cancer pain and their families. Data collection and analysis: We conducted a qualitative evidence synthesis using meta-ethnography, a seven-phase, systematic, interpretive, inductive methodology that takes into account the contexts and meanings of the original studies. We assessed the richness of eligible studies and purposively sampled rich studies ensuring they addressed the review questions. Cochrane Qualitative Methods Implementation Group guidance guided sampling. We assessed the methodological limitations of studies using the Critical Appraisal Skills Programme tool. We extracted data on study aims, focus, characteristics and conceptual findings from study reports using NVivo software. We compared these study data to determine how the studies related to one another and grouped studies by pain conditions for synthesis. We used meta-ethnography to synthesise each group of studies separately before synthesising them all together. Analysis and interpretation of studies involved children ith chronic non-cancer pain and their families and has resulted in theory to inform service design and delivery. Sampling, organising studies for synthesis, and analysis and interpretation involved our patient and public involvement group who contributed throughout the conduct of the review. We used the GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach to assess our confidence in each review finding. We used a matrix approach to integrate our findings with existing Cochrane Reviews on treatment effectiveness for children’s chronic non-cancer pain. Main results: We synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Included studies involved 633 participants. GRADE-CERQual assessments of findings were mostly high (n = 21, 58%) or moderate (n = 12, 33%) confidence with three (8%) low or very low confidence. Poorly managed, moderate or severe chronic non-cancer pain had profound adverse impacts on family dynamics and relationships; family members’ emotions, well-being, autonomy and sense of self-identity; parenting strategies; friendships and socialising; children’s education and future employment prospects; and parental employment. Most children and parents understood chronic non-cancer pain as having an underlying biological cause and wanted curative treatment. However, families had difficulties seeking and obtaining support from health services to manage their child’s pain and its impacts. Children and parents felt that healthcare professionals did not always listen to their experiences and expertise, or believe the child's pain. Some families repeatedly visited health services seeking a diagnosis and cure. Over time, some children and families gave up hope of effective treatment. Outcomes measured within trials and Cochrane Reviews of intervention effects did not include some outcomes of importance to children and families, including impacts of pain on the whole family and absence of pain. Cochrane Reviews have mainly neglected a holistic biopsychosocial approach, which specifies the interrelatedness of biological, psychological and social aspects of illness, when selecting outcome measures and considering how chronic pain management interventions work. Authors' conclusions: We had high or moderate confidence in the evidence contributing to most review findings. Further research, especially into families' experiences of treatments and services, could strengthen the evidence for low or very low confidence findings. Future research should also explore families' experiences in low- to middle-income contexts; of pain treatments including opioid use in children, which remains controversial; and of social care services. We need development and testing of family-centred interventions and services acceptable to families. Future trials of children's chronic non-cancer pain interventions should include family-centred outcomes. Copyright © 2023 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.
France E; Uny I; Turley R; Thomson K; Noyes J; Jordan A; Forbat L; Caes L; Silveira Bianchim M
Cochrane Database of Systematic Reviews
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/14651858.CD014873.pub2" target="_blank" rel="noreferrer noopener">10.1002/14651858.CD014873.pub2</a>
Compassion fatigue, burnout, and compassion satisfaction in pediatric palliative care (PC) providers in the U.S
awareness; burnout; child; Compassion fatigue; conference abstract; coworker; distress syndrome; education; exhaustion; friend; health care personnel; human; injury; life sustaining treatment; linear regression analysis; palliative therapy; prevalence; questionnaire; risk factor; satisfaction with care; self care; social isolation; wellbeing
Purpose: Compassion fatigue (CF) is emotional distress experienced by providers from ongoing contact with patients' suffering. Burnout (BO) is personal distress due to uncontrollable workplace factors that manifest in career dissatisfaction. CF and BO can each lead to emotional exhaustion, depression, frustration, depersonalization, and sense of loss in one's achievements; in healthcare providers, this can adversely affect patient care. Compassion satisfaction (CS) is professional fulfillment derived from caring for others. Pediatric palliative care (PC) providers are continuously exposed to clinical experiences that are physically and emotionally demanding and draining. Therefore, we aimed to determine the prevalence of CF, BO, and CS and identify potential predictors of these phenomena in pediatric PC providers.
Kase S M; Waldman E D; Weintraub A S
Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
The agony of the child with complexity: Exploring the psychological impact on parents caring for children with complex healthcare needs
Medline; child; female; human; male; qualitative research; conference abstract; caregiver; systematic review; meta analysis; publication; social support; depression; sample size; disease exacerbation; North America; health care need; Ireland; medical leave; mental stress; parental stress; prevention; psychological well-being; social isolation
Aims: Medical advances and improved neonatal care have led to increased survival of children with complex healthcare needs. The aim of this literature review was to explore what is known about the psychological impact on parents of caring for children with complex healthcare needs across North America and Europe, and more specifically within Ireland. Method(s): A comprehensive search of the literature published within the last ten years was performed using PubMed and PyschINFO databases. Ten papers, consisting of qualitative studies and meta-analyses, which varied in sample size and methodology, were selected for detailed review. Result(s): Recent publications emphasise that caring for a child with complex care needs has a significant negative impact on the psychological wellbeing of parents. Several qualitative studies have shown that caregivers of children with life-limiting illness are up to twice as likely to report higher levels of parenting stress and depressive symptoms than parents of healthy children. The literature suggests that women experience greater parenting stress in caring for severely ill children than men, with one study noting an increase in maternal sick leave for psychological distress. However, women were more likely to report being the predominant caregiver, which could account for this discrepancy. Social isolation was a recurring factor contributing to the perceived burden of stress experienced by caregivers. Similar themes were evident across North America and Europe publications. We noted a paucity of research in the Irish context. Conclusion(s): Further research is needed to evaluate the psychological impact of caring for a child with complex healthcare needs and to guide management and prevention of parental stress and psychological illness, particularly in Ireland. Additional studies are needed to determine if increased social support reduces psychological stress and to investigate the effects of parental stress on disease progression in children with complex heathcare needs.
Crothers E; Bradbury M; Lewis S; O'Gorman C; Murphy A M
Archives of Disease in Childhood
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Introduction to a Novel Palliative Care Intervention for Family Caregivers of Children and Adolescents Living with Rare Diseases (TH308)
advance care planning; adolescent; pediatrics; feasibility study; palliative therapy; major clinical study; needs assessment; videorecording; caregiver; nonhuman; Human immunodeficiency virus; human experiment; malignant neoplasm; wellbeing; skill; conference abstract; human; child; female; male; controlled study; interview; comorbidity; uncertainty; medical care; social isolation; rare disease; health disparity; rigor
Objectives: *Establish the need for a family caregiver intervention for parents of children with rare diseases.*Introduce the intervention and its components.*Disseminate findings from the piloting of this intervention. In the U.S. a rare disease is defined as a condition affecting fewer than 200,000 persons. Pediatric patients with rare diseases experience high mortality. Pediatric advance care planning (pACP), a key component of pediatric palliative care, has been proven to improve communication and spiritual and emotional well-being for children with cancer and HIV and their families. For providers, pACP, involves preparation and skill development to facilitate discussions about goals of care and future medical care choices. Due to the uncertainty surrounding a rare disease diagnosis, social isolation and the likelihood of parents being asked to make complex medical decisions for their child, rare diseases exact a severe emotional toll on families. There is an urgent need for interventions to ease the suffering of these families, yet few empirically validated interventions exist to address these issues. Moreover, children with rare diseases are a heterogeneous group who because of co-morbidities are often excluded from research, thereby creating a health disparity. Available research lacks scientific rigor. Our consultation with families of children with rare diseases and with the National Organization for Rare Disorders revealed that basic palliative care needs should be addressed prior to a pACP intervention. Thus, we pilot tested the innovative FACE-Rare intervention, integrating two, previously adapted for pediatrics, evidence-based interventions: Carer Support Needs Assessment Tool (Sessions 1 & 2) plus Respecting Choices (Sessions 3 & 4). For acceptability, feasibility and safety purposes, we pilot tested the 4-session intervention, conducted exit interviews, baseline and 2-week post-intervention assessments. This session will review the existing research on the palliative care needs of family caregivers of children with rare diseases, introduce this innovative intervention and its components, disseminate findings from the beta testing and pilot testing, and discuss future directions for research. Video clips will also be presented.
Friebert S; Fratantoni K; Wiener L; Needle J; Fraser J; Gaines J; Alderfer M; Lyon M
Journal of Pain and Symptom Management
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2018.12.037" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2018.12.037</a>
Conflicting realities experienced by children with life-limiting and life-threatening conditions when transitioning to adult health services
social support; qualitative analysis; palliative therapy; major clinical study; sibling; non profit organization; skill; joint; human; article; child; female; male; controlled study; adult; interview; total quality management; transition to adult care; learning; social media; adult child; secondary analysis; dilution; facilitation; social isolation
AIMS: The aim of this study was to report a secondary qualitative analysis exploring the cultural and practical differences that young people and parents experience when transitioning from children's to adult services. BACKGROUND: Despite two decades of research and quality improvement initiatives, young people with life-limiting and life-threatening conditions still find transition unsatisfactory. DESIGN: Secondary analysis: 77 qualitative interviews with children and young people (20), parents (35), siblings (1), professionals (21).
Noyes J; Pritchard S; Pritchard A; Bennett V; Rees S
Journal of advanced nursing
2018
<a href="http://doi.org/10.1111/jan.13811" target="_blank" rel="noreferrer noopener">10.1111/jan.13811</a>
Children's experiences of cystic fibrosis: a systematic review of qualitative studies
adolescent; Child; Humans; Young Adult; Prognosis; Health Services Needs and Demand; social support; Qualitative Research; Social Isolation; Sick Role; Social Adjustment; Cystic Fibrosis; Activities of Daily Living; Self Care; Cost of Illness; Internal-External Control; Defense Mechanisms; Disability Evaluation; Hope; Power (Psychology); quality of life; Preschool; Adaptation; Psychological; Resilience
BACKGROUND AND OBJECTIVE: Cystic fibrosis (CF) is a common life-shortening genetic disease and is associated with poor psychosocial and quality of life outcomes. The objective of this study was to describe the experiences and perspectives of children and adolescents with CF to direct care toward areas that patients regard as important. METHODS: MEDLINE, Embase, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature were searched from inception to April 2013. We used thematic synthesis to analyze the findings. RESULTS: Forty-three articles involving 729 participants aged from 4 to 21 years across 10 countries were included. We identified 6 themes: gaining resilience (accelerated maturity and taking responsibility, acceptance of prognosis, regaining control, redefining normality, social support), lifestyle restriction (limited independence, social isolation, falling behind, physical incapacity), resentment of chronic treatment (disempowerment in health management, unrelenting and exhausting therapy, inescapable illness), temporal limitations (taking risks, setting achievable goals, valuing time), emotional vulnerability (being a burden, heightened self-consciousness, financial strain, losing ground, overwhelmed by transition), and transplant expectations and uncertainty (confirmation of disease severity, consequential timeliness, hope and optimism). CONCLUSIONS: Adolescents and children with CF report a sense of vulnerability, loss of independence and opportunities, isolation, and disempowerment. This reinforces the importance of the current model of multidisciplinary patient-centered care that promotes shared decision-making, control and self-efficacy in treatment management, educational and vocational opportunities, and physical and social functioning, which can lead to optimal treatment, health, and quality of life outcomes.
2014-06
Jamieson N; Fitzgerald D; Singh-Grewal D; Hanson CS; Craig JC; Tong A
Pediatrics
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1542/peds.2014-0009" target="_blank" rel="noreferrer">10.1542/peds.2014-0009</a>
The reflections you get': an exploration of body image and cachexia.
Female; Humans; Male; England; Attitude to Health; Interpersonal Relations; Prognosis; Questionnaires; Aged; Middle Aged; Health Services Needs and Demand; Qualitative Research; Social Isolation; Holistic Health; Spirituality; Nursing Methodology Research; Body Image; 80 and over; Adaptation; Psychological; social support; Social Behavior; Terminally Ill/px [Psychology]; Narration; Palliative Care/mt [Methods]; Cachexia/et [Etiology]; Neoplasms/co [Complications]; Quality of Life/px [Psychology]; Palliative Care/px [Psychology]; Cachexia/px [Psychology]; N
BACKGROUND: cachexia has a detrimental effect on quality of life and is an indicator of poor prognosis. The meanings people attach to their lived experiences of cachexia are unknown. AIMS: to explore the impact of cachexia on body image of people with advanced cancer, their emotions, relationships and social functioning. DESIGN: qualitative study using face-to-face in-depth interviews of a conversational style. Rich narrative data analysed by thematic content analysis. PARTICIPANTS: 12 participants recruited from two community palliative care teams in south east England. RESULTS: altered body image impacts on other aspects of embodiment: the emotions, spirituality, relationships and social functioning. Lives were restricted and isolated, which was compounded by emotional distancing by carers and health care professionals. Participants discussed their repeated attempts to re-adapt to disruptions of self caused by an altered body image. CONCLUSIONS: the key study implications focus on the need for (i) improved holistic care and support, and advice; (ii) training and awareness raising of care professionals; (iii) further research on the lived experiences of the condition and the development of effective measures of cachexia.
2007
Hinsley R; Hughes R
International Journal Of Palliative Nursing
2007
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.12968/ijpn.2007.13.2.23068" target="_blank" rel="noreferrer">10.12968/ijpn.2007.13.2.23068</a>
Coping with Dravet syndrome: parental experiences with a catastrophic epilepsy
Child; Female; Humans; Male; Adult; Parent-Child Relations; Middle Aged; Social Isolation; Severity of Illness Index; Family Health; Stress; adolescent; Preschool; Syndrome; Adaptation; Psychological; Caregivers/psychology; Q3 Literature Search; Chronic disease; Parents/psychology; social support; Psychological/psychology; Epilepsy/nursing/psychology; Seizures/nursing/psychology
The aim of this study was to investigate how parents cope with and care for a child with Dravet syndrome, a severe myoclonic epilepsy with three distinct stages. Twenty-four parents of children with Dravet syndrome participated in a semi-structured interview and 17 completed the Impact of Childhood Neurologic Disability Scale (ICND) questionnaire. Children included 11 males and 13 females aged 2 to 24 years (mean age 10y 2mo [SD 5y 8mo]). Stage 1 of the syndrome was generally very difficult. Uncertainty about the diagnosis was the primary cause of stress. Seizure control was worst during this time. The primary concern in Stage 2 remained seizure control but developmental, behavioral, and sleep issues also emerged. Negative effects were noted in parents' relationships with others. Stage 3 brought better seizure control but decreased cognitive level, increased behavioral problems, and increasing social isolation for parents. Respite and relief care were hard to obtain at each stage. ICND scores mirrored the findings of the interviews. The three stages of Dravet syndrome present serious challenges for parents. Seizures are persistent and severe but developmental, behavioral, and sleep issues add to the stress. In the absence of successful medical treatment for Dravet syndrome, further attention needs to be paid to helping families cope with the disorder.
2006
Nolan KJ; Camfield CS; Camfield PR
Developmental Medicine And Child Neurology
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1017/S0012162206001629" target="_blank" rel="noreferrer">10.1017/S0012162206001629</a>
The art of healing and knowing in cancer and palliative care
Child; Humans; Grief; Adult; Self Concept; Communication; Social Isolation; Child Psychology; Nurse-Patient Relations; Psychological; PedPal Lit; social support; Anger; knowledge; Attitude to Death; Morale; Oncologic Nursing; Adaptation; Attitude to Health; Nurse's Role/psychology; Symbolism; Art Therapy/methods; Color; Palliative Care/methods/psychology; Unconscious (Psychology)
This article examines the role of artwork in cancer and palliative care. The literature review focuses on both children and adults. One case scenario focuses on a child's reaction to his mother's illness showing his distress through painting. Artwork from children are included in the text to help demonstrate some feelings and reactions to illness. Some themes, which emerged from examination of the artwork, were isolation, anger, and lack of hope. Carers became overtly aware of the distress people were experiencing through artwork. Art depicted graphically what people were feeling and can, therefore, be considered a valuable tool in the communication process. It is useful especially when individuals are unable to express their feelings verbally. Recommendations focus on how artwork may be implemented in hospice and hospital settings and on how the environment may be made safe psychologically. The importance of the art process rather than on artistic skill is discussed. The potential for developing creativity at the end of life, when self-esteem may be low is explored.
2006
Devlin B
International Journal Of Palliative Nursing
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
Having a brain tumour: A journey through life
Male; Adult; Depression; adolescent; social support; Anti-Inflammatory Agents; Human; Brain Neoplasms/px [Psychology]; Brain Neoplasms/th [Therapy]; quality of life; Social Isolation; Antineoplastic Combined Chemotherapy Protocols/tu [Therapeutic Use]; Case Report; Dexamethasone/ae [Adverse Effects]; Dexamethasone/tu [Therapeutic Use]; humanism; Steroidal/ae [Adverse Effects]; Steroidal/tu [Therapeutic Use]; Weight Gain; Wit and Humor
2002
Green T
Medical & Pediatric Oncology
2002
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/mpo.10143" target="_blank" rel="noreferrer">10.1002/mpo.10143</a>