Mette Spliid Ludvigsen

Adolescents and young adults' experiences of living with everyday pain: a systematic review protocol of qualitative evidence

Review question/objective What are the experiences of adolescents and young adults (AYA) living with everyday pain? The objective of this systematic review is to identify and synthesize the best available evidence from qualitative primary studies on how adolescents and young adults’ experience living with everyday pain. Background During the last 10 years pain has been recognized as a growing health problem in children and adolescents worldwide, and there is increasing evidence that daily life, function and well‐being are affected by pain.1 The literature shows that as much as 15%‐30 % of adolescents are suffering from persistent or chronic pain conditions, and this is regarded as a significant public health problem.2‐6 According to the International Association for the Study of Pain (IASP), pain is always subjective.8 Pain is a common concept in the nursing literature, and McCafferys well‐known definition of pain is often cited: “Pain is whatever the experiencing person says it is, existing whenever he says it does”.7(p.15) The International Association for the Study of Pain also recognizes the central role of emotions in pain defining pain as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage”.8(p.94) According to Eccleston two core aspects of pain are however missing from these definitions. In addition to the private felt character of pain it is also a social and communicative event. Pain expression may function to communicate to others the possibility of danger and presence of personal suffering.9 Further pain may function to override other concerns and to motivate escape or avoidance. Everyday pain is described by Eccleston as: “pain that is clinically unimportant that arises from normal everyday activity. Pain functions to interrupt current concerns and promote problem solving typically in the form of escape, pain management, or request for assistance”.10(p.47) The literature shows that self‐reported pain increases with age, and older children report more pain than younger children.3,5 The expression of pain as having an emotional basis also increases with age, and is expressed more frequently by adolescents.11 The most commonly reported pains in adolescents are headache, abdominal pain, backache, and limb pain, and many adolescents report multiple pain sites.5 Qualitative studies on adolescents’ experiences reveal how living with chronic everyday pain strongly influences adolescents’ daily life in different ways. It may result in absence from school, poor school performance, problems with social activities, isolation, stigma and sleeping problems.3,12‐14 The adolescents’ pain experience is influenced by a complex interaction between biological, sociocultural, and psychological factors.15 Children from families with low socioeconomic status report more pain than children from families with higher socioeconomic status.6,16 Moreover social factors such as parents’ income, education, and also psychosocial variables, such as divorce, anxiety, and depression, have been shown to be related to pain in children and adults.16 Pain may be symptoms of underlying causes, and have been associated with psychosomatic problems, such as stress, problems in relations with schoolmates, and with lack of sleep or exercise.17 The association between stress and headaches is stronger among teens with frequent headaches,18 and living with a high stress level over time may give adolescents feelings of helplessness. It has been suggested that changes in modern society and in the lifestyles of adolescents such as their frequent use of computers, more sedentary behaviour, greater stress, less sleep and greater psychological burdens may contribute to the increase in self‐reported pain.19,20 Managing stability through stressful challenges called allostasis (stability through change) is a challenge to adolescents and young adults.21 Continuous stress may induce allostatic overload, which might partly explain why some adolescents frequently experience pain and become high frequency users of over‐the‐counter (OTC) analgesics.22 Holmströms study of Swedish teenagers’ OTC drug use revealed how vulnerable teenagers may be as new consumers of OCT drugs.23 A knowledge gaps among the teenagers concerning OTC drugs was identified, and also that their OCT drug use was significantly influenced by parents and peers. The high prevalence of pain is a cause of concern, especially because pain negatively affects adolescents’ daily life and activities in different ways. Adolescence is a period in life in which great changes occur, and children are faced with physical, psychological and social changes that may be challenging. Pain problems may also have serious long term consequences, as pain problems can persist into adulthood and develop into chronic or persistent pain.24 Studies show that children with recurrent headaches, abdominal pain and other symptoms are at increased risk of developing chronic musculoskeletal pain in adulthood.25 Different coping strategies are described in the literature, and a passive coping strategy has been associated with higher levels of pain.26 Peer influence is apparent in the socialization of pain experience,27 and qualitative studies have shown that girls are more likely to talk to friends about pain problems than boys.28 Studies have also showed that more girls than boys use pain medication as coping strategy.28 Moreover, qualitative studies illuminated that children describe a stressful life and too little sleep as common causes of pain. Adolescents’ and young adults’ search for pain relief may lead to an increase in the use of pain relievers as OTC analgesics, illicit drugs and alcohol.29 Recent Nordic studies show that adolescents have a high frequency use of analgesics.22 The frequence of adolescent users of OTC analgesics in Norway and Denmark has also increased remarkably from 5% among boys and 14% among girls, to 26% for both genders during the last years.22,23,30 Even if we have knowledge of the prevalence and impact of pain, and this topic has been well investigated during the last years, much remains unknown about the causes of pain, adolescents own experience of living with pain, and also their coping strategies. To be able to support adolescents to relate to their pain in such way that it does not lead to chronic or persistent pain, we need more knowledge about their own thoughts and experience according to pain experience. There are few such studies in a non‐clinical population.9 An initial search on the keywords “adolescent*” OR “young adults” AND “pain” in the databases Medline, CINAHL, PsychINFO, EMBASE, JBIConnect+, PROSPERO or Cochrane Library indicated that no systematic review of qualitative evidence on this topic exists, or is currently underway. Thus a qualitative systematic review with metasynthesis by meta‐aggregation may provide important and relevant evidence about this topic.

Parents’ experiences of the transfer from pediatric to adult care for their adolescent or young adult children with chronic conditions: a systematic review protocol

Review question/objective The objective of this systematic review is to identify parents’ experiences of adolescents and young adults (AYA) health care transfer from pediatric to adult care. 1. How do parents experience being prepared for the transfer from pediatric to adult care of their AYA with a chronic condition? 2. How do parents experience the event of transfer? 3. How does the type of chronic condition influence parents’ experiences of AYAs’ transfer from pediatric to adult care? Background The prevalence of chronic conditions in adolescence is increasing and it is estimated that between 7.5% and 15% of adolescents suffer from a chronic disease depending on the diversity in methodology and definitions used.1 Advances in medical technology are resulting in that more children are diagnosed with severe and chronic conditions; they are surviving childhood and likely to overcome adolescence and reach adulthood.2 Thus an increasing number of parents are faced with preparing AYAs for managing and taking over responsibility for their chronic disease. The parental role is changing regarding monitoring and supervision, in setting boundaries and limits and in regulating homework and spare time.3 Issues such as confidentiality in relation to medical treatment may leave parents at a loss, leading to lowered parental self‐confidence, increased anxiety and less effective parenting.3 Parents are documented to worry about their childs ability to manage their disease themselves.4 This may activate reluctance to letting go of the AYA.5‐7 Adolescence is characterized by physical (puberty, changes in the brain, growth and sexual maturation), as well as mental (thinking and reasoning, and the self and identity) and social changes (relationships, family, peers and friends).3 In this period, AYAs parents cope with the chronic condition together with worries about sexuality, mood, mental health, substance abuse, risk‐taking behavior and decisions about their own health.8 In the adolescence health transition, AYAs themselves highlight issues such as independence, relationship with professionals, differences in ward cultures and process and timing of transfer.9 Parents’ physical and emotional support plays an important role in the process of AYAs’ transition to adulthood. AYAs need their parents for support, comfort, reassurance, feedback and guidance. The influence of the family, especially of the parents, on the development of a child and adolescent is important in relation to quality of life of the AYAs.10 AYAs with chronic conditions rely on their parents to manage their care, such as scheduling appointments and communication with health care professionals.11 Even when they have successfully transitioned to independence in the care for their own disease, some continue to regularly consult their parents regarding their care and/or live with their parents.12 Parents appear to favor attending appointments together with AYAs before transfer in contrast to what the AYAs favor.13 In addition, parents seem concerned whether they will become less involved in the care following transfer.13 Parents seem to prefer older age at transfer from pediatric to adult care. While dedicated AYA services were described as beneficial by patients and their parents, only 50% of AYAs preferred to have medical appointments joint with their parents.13 In addition, to cooperate and support AYAs, health care professionals also have to cooperate with and support parents during their transition into adulthood as their role as parents is also transitioned. The concept of transition has been developed for more than 30 years.14‐15 A transition is characterized by an unstable passage between two more stable life periods; a time span with an endpoint, a period of instability and confusion and an ending with a new beginning of stability.15 Transition denotes a change in health status, or in role relationships, expectations, or abilities. Transition requires the person to incorporate new knowledge, to alter behavior and therefore to change the definition of self in social contexts.15 In this review, transfer is defined as a professional act where the organization reassigns adolescents from pediatric to adult care and the personal experience of the transfer is defined as transition.16‐17 Most definitions of chronic condition address duration and limitations in functional level, although there is currently no existing common definition.18 This review defines a chronic condition as a condition having a biological basis, lasting for a minimum of 12 months and necessitating compensatory assistance (e.g. medication).19 There is no longer any clear or well defined moment when an individual reaches adulthood.20 Adolescence has been defined as a phase of life between childhood and adulthood from 12 to 22 years, characterized by a specific physical, psychological and social development.21 For the purpose of this review, adolescence is defined as 13‐18 years of age and young adulthood is defined as 19‐24 years of age. Parents are defined as fathers and mothers or significant others such as grandparents and close relatives who act on behalf of the parents. In a previous published meta‐synthesis, the perspective of AYAs experiences during transfer from child centered to adult centered care was explored using similar transfer and transition definitions.9 The two reviews are expected to be part of a future umbrella review concerning AYAs, professionals (nurses) and parents’ experiences of AYAs transfer from child centered to adult centered care. In addition the author team of the current review forms a research group exploring transition in various ways and populations.9,22‐25 Systematic, stepwise approaches including metasynthesis of parents’ perspectives could, together with the perspectives of AYAs and health care professionals, be used for developing clinical, educational and health care policies. By conducting this review, the authors wish to contribute knowledge which professionals in health care can include in their clinical work when making a professional assessment of the transitional needs concerning parents of AYAs during their continuing encounters with the health care system. A preliminary search of the JBI Database of Systematic Reviews and Implementation Reports, CINAHL, PubMed and PROSPERO revealed that there is no available systematic review or protocol on this topic.

Parents' experiences of neonatal transfer: A meta-study of qualitative research 2000-2017

Transfers of critically ill neonates are frequent phenomena. Even though parents participation is regarded as crucial in neonatal care, a transfer often means that parents and neonates are separated. A systematic review of the parents experiences of neonatal transfer is lacking. This paper describes a meta-study addressing qualitative research about parents experiences of neonatal transfer. Through deconstruction and reflections of theories, methods, and empirical data, the aim was to achieve a deeper understanding of theoretical, empirical, contextual, historical, and methodological issues of qualitative studies concerning parents experiences of neonatal transfer over the course of this meta-study (2000-2017). Meta-theory and meta-method analyses showed that caring, transition, and family-centered care were main theoretical frames applied and that interviewing with a small number of participants was the preferred data collection method. The meta-data-analysis showed that transfer was a scary, unfamiliar, and threatening experience for the parents; they were losing familiar context, were separated from their neonate, and could feel their parenthood disrupted. We identified wavering and wandering as a metaphoric representation of the parents experiences. The findings add knowledge about meta-study as an approach for comprehensive qualitative research and point at the value of meta-theory and meta-method analyses.

Exchanging narratives – a qualitative study of peer support among surgical lung cancer patients

AIM AND OBJECTIVEnThe aim of this study was to examine how hospitalised, surgical lung cancer patients experience talking to a former patient, and how the former patient experiences the role as supportive.nnnBACKGROUNDnDuring hospitalisation, patients often create a community in which they can engage with fellow patients. The exchange of experiences with others in a similar situation might increase opportunities for support and complement nursing care, but there is a need for more evidence and understanding on the topic.nnnDESIGNnThe methodological framework is based on the French philosopher Paul Ricoeurs text interpretation theory. Qualitative interviews were conducted with nine patients, including a peer informant, using a narrative structure. The analysis was conducted on three levels: (i) naïve reading, (ii) structural analysis and (iii) critical interpretation .nnnRESULTSnFour themes were developed from the analysis of the interviews: Exchanging emotional thoughts is easier with a peer; Talking to a peer reduces loneliness; Being ambiguous about a relationship with fellow patients; and Being the main person in the conversation with a peer. Sharing stories about having similar symptoms and undergoing similar journeys predominated, and the key feature of the contact between patients was the commonality of their stories.nnnCRITICAL INTERPRETATION AND CONCLUSIONnTelling ones story to a former patient, and thereby creating a joint, common story, is the essence of this study. The support received in this process can be empowering because knowledge of the illness experience is shared and increased. This can help create new coping strategies. The contact with a former patient offered a way to confirm ones thoughts and to find a way out of the illness perspective, by seeing how the former patient had recovered.nnnRELEVANCE TO CLINICAL PRACTICEnThe nursing field faces challenges in the relational aspect of caring because of ever greater efficient and shortened hospital stays; therefore, the peer support concept is becoming increasingly relevant. Patient peers offer each other their own perspectives, and it is important to raise awareness of the value of this and incorporate it into patient stays in hospital.

Older adults’ experiences of patient involvement in transitional care: a qualitative systematic review protocol

REVIEW QUESTION/OBJECTIVEnThe objective of this review is to identify and synthesize older adults experiences of patient involvement in transitional care between hospital and home. The purpose is to build theory to inform future research and clinical practice.The review will specifically address the following research questions.