Journal of Pediatric Psychology Advance Access originally published online on January 18, 2008
Journal of Pediatric Psychology 2008 33(6):640-659; doi:10.1093/jpepsy/jsm139
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Parental Functioning in the Context of Adolescent Chronic Pain: A Review of Previously used Measures
1Pain Management Unit, University of Bath and 2Department of Clinical and Health Psychology, Ghent University
All correspondence concerning this article should be addressed to Prof. Christopher Eccleston, PHD, Pain Management Unit, Level 7, Wessex House, The University of Bath, Bath BA2 7AY, UK. E-mail: c.eccleston{at}bath.ac.uk
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Abstract |
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Objective To examine the use of instruments which assess the functioning of individuals who parent an adolescent with chronic pain. The study will focus on examining the population in which measures were developed, content, length, psychometric evaluation, and published use with this specific chronic pain population. Methods A systematic search of the literature identified 4,225 articles, generating a total of 73 eligible studies. Examination of these studies revealed the existence of 68 instruments. All measures underwent comprehensive content analysis. Results The majority of instruments were in the psychological (N = 32) or social domain (N = 25). Median frequency of usage was 1. While 27 instruments demonstrated evidence of psychometric evaluation in a sample of parents of adolescents with chronic pain, in 20 instances, this evaluation involved only assessment of internal consistency. Conclusions Clinically relevant psychometric data were missing for many instruments. Results identified a diversity of instrumentation with little consistency in instrument usage.
Key words: adolescent; chronic pain; measurement; parent; psychometric evaluation..
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Introduction |
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Recent epidemiological studies have identified the high prevalence of everyday pain in adolescents (Roth-Isigkeit, Thyen, Stoven, Schwarzenberger, & Schmucker, 2005
) and the existence of a smaller group of adolescents who report severe unremitting pain and associated disability (Perquin et al., 2000). Typically, adolescents with chronic pain report high levels of anxiety and depression, disability, social role disruption (including schooling disruption), and delays in mastering developmental tasks (Eccleston, Crombez, Scotford, Clinch, & Connell, 2004; Hunfeld et al., 2001; Kashikar-Zuck, Goldschneider, Powers, Vaught, & Hershey, 2001; Palermo, 2000).
Chronic pain occurs within a social context (Sullivan et al., 2001), and thus research studies have focused on exploring the wider context of adolescent chronic pain, largely focusing on the experiences of parents. While the knowledge base concerning the experience of parenting an adolescent with chronic pain remains limited, there has been a steady increase in the number of studies in this particular field in recent years (Palermo & Chambers, 2005). Research studies investigating the role of parental functioning and behavior in the context of parenting an adolescent with chronic pain have made important contributions to existing knowledge of the wider implications of adolescent pain. Initial studies have demonstrated that parents of adolescents with chronic pain report impaired emotional functioning including high levels of parenting stress, anxiety, and depression (Eccleston et al., 2004; Eccleston, Malleson, Clinch, Connell, & Sourbut, 2003; Walker & Greene, 1989). Furthermore, mothers of adolescents with chronic pain report limitations in their social functioning in addition to greater levels of personal strain (Hunfeld et al., 2001). Studies have also focused on the health and well-being of individuals who parent an adolescent with chronic pain, with findings suggesting increased levels of fatigue, pain, and ill health in this specific parental population (Hotopf, Carr, Mayou, Wadsworth, & Wessely, 1998; Reid, Lang, & McGrath, 1997; Schanberg, Keefe, Lefebvre, Kredich, & Gil, 1998).
Parenting an adolescent with chronic pain brings specific challenges. Parents report a sense of challenge to their competence as an effective parent of their adolescent with chronic pain, substantial uncertainty about the future of their adolescent with chronic pain, and, in particular, appear to have an awareness of being suspended in a parenting pattern more akin to that of parenting an younger child (Jordan, Eccleston, & Osborn, 2007; Smart & Cottrell, 2005). Please see Palermo and Chambers (2005) for a more detailed review of parenting in the context of adolescent chronic pain.
While the previously mentioned studies have made important contributions to the literature, it is important to note that few have addressed the issue of directionality using a longitudinal design and thus it is important to exercise caution when interpreting the direction of study findings with regard to adolescent and parental outcomes. Furthermore, the issue of parents having their own treatment needs (e.g., management of parental anxiety or parenting style) is beginning to be recognized (Jordan et al., 2007). A small number of interventions for adolescent chronic pain have begun to incorporate content designed specifically to address parenting issues in chronic pain (Eccleston et al., 2004; Eccleston, Connell, & Carmichael, 2006; Merlijn et al., 2005).
While the knowledge base concerning parental need in the context of adolescent chronic pain continues to grow, little is known about the measures employed in studies comprising parents of adolescents with chronic pain. Given the increasing research interest, and a call to synthesize research in this developing field (Palermo & Chambers, 2005), it is timely to undertake a detailed investigation of the measures that have been used with parents of adolescents with chronic pain. There exist many measures of adult experience where the focus of their development is on the adult in a range of situations, and there are good review papers by Gilbody, House, and Sheldon (2001), Visser-Meily, Post, Riphagen, and Lindeman (2004), and a comprehensive overview of health related measures in Bowling (2005). Here, however, we are interested in the experience of parents in the context of being a parent of a child disabled and distressed by chronic pain. This specific context, we argue raises unique validity and reliability issues, which provides the focus of this review.
Similar reviews of measures used with children and adolescents with chronic pain (Eccleston, Jordan, & Crombez, 2006; Stinson, Kavanagh, Yamada, Gill, & Stevens, 2006; von Baeyer & Spagrud, 2007) have proven useful to the chronic pain research and the clinical community (Zeltzer, Tsao, Bursch, & Myers, 2006), providing valuable information concerning gaps in the literature and psychometric properties of measures. In this article, we have chosen to review comprehensively all of the measures used to assess the functioning and behavior of individuals who parent an adolescent with chronic pain. The overall aim of the review of parent measures is to provide clinicians and researchers with a summary of measurement instruments used in previously published studies with populations of parents of adolescents with chronic pain. More specifically, we aim to describe the development of the identified instruments, depict the domains covered, report on their psychometric properties, and document their particular use with parents of adolescents experiencing chronic pain.
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Method |
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A comprehensive, descriptive and evaluative review was conducted of all measures used with parents of adolescents aged 11–18 years experiencing chronic pain.
Inclusion Criteria
The review is limited to measures that have been used in published studies, which comprise of parents of adolescents aged 11–18 years who experience chronic pain. For the purposes of this study, the term "chronic pain" is defined as pain which persists continuously or intermittently for a period of 3 months or longer (Elliott, Smith, Penny, Smith, & Chambers, 1999). Individuals were defined as "parents" if they undertook a primary nurturing and care-giving role towards an adolescent in their care, with the aim of promoting a positive role model for the adolescent. Studies including parents of individuals aged <11 years were excluded because adolescence is a distinct developmental stage when the incidence of chronic pain rises dramatically, and one which presents parents with unique challenges which differ to those experienced by parents of younger children with chronic pain. Unpublished studies were not eligible for inclusion in the review because a quality criterion of published articles was set in this review to ensure that articles had been subjected to a critical peer review process. Searches with all databases were restricted to searching for articles published in the English language. This was to avoid problems of translation of non-English articles. Searches did, however, include papers that originated from non-English speaking countries and were published in the English language. In such cases, English translations of the measures were available. With the exception of observational coding measures, no specific restrictions were placed with regard to the report of the measure. While we concede that observational measures make an important contribution to an understanding of parental responses to adolescent pain, we felt that differences between self-report measures and observational measures warranted separate reviews of these types of measures, as has been conducted for adolescent measures (von Baeyer & Spagrud, 2007). Parent-report measures were excluded if they focused solely on the assessment of adolescent functioning.
Search Strategies
The review of measures was conducted in a similar manner to that employed in a recent review of measures previously published by our group (Eccleston et al., 2006). Firstly, Web of Science, Psychinfo, Embase, Pubmed, and Cinahl were searched for any published article reporting instrument development or use with a population comprising parents of adolescents with chronic. Searches were restricted to the period from January 1, 1970 to October 12, 2005 and required the use of any of the search terms in the abstract. The same search terms were used for all five databases, although the architecture of the strategies differed according to the requirements of each specific database. More specifically, search strategies included terms referring to parents (e.g., "mother," "father"), adolescent chronic illness with pain, specific chronic pain conditions (e.g., "chronic pain," "recurrent abdominal pain," etc.) and terms with diseases for which chronic pain is a common complaint (including irritable bowel syndrome, arthritis, sickle cell disease, etc.). Although search terms did include keywords for rheumatological conditions, abstracts were only considered to be eligible for inclusion in the review if the term "pain" was mentioned in the abstract. As the inclusion criteria included the use of a measure with a parent of an adolescent with chronic pain, studies were eligible if they focused on either the assessment of parental variables on adolescent chronic pain-related outcomes or the effect of adolescent chronic pain on parental functional outcomes.
This procedure resulted in the identification of a total of 4,233 articles. Second, the abstracts of all 4,223 articles were searched to identify potentially eligible studies for inclusion in the review. Of these articles, 60 studies were identified as eligible for inclusion. Third, the reference sections of these 60 articles were searched, identifying 11 further articles. Finally, authors of instruments, and key researchers currently working in the field of pediatric pain management were asked to identity any additional relevant studies. This produced a further two articles. A total of 73 eligible studies were identified in this review, all of which included the study of functioning of parents of adolescents with chronic pain. The most common reasons for exclusion of studies included samples comprising; parents of children aged 10 years or less, adult children undertaking a caring role for elderly parents, parents of children with non pain-related chronic illness, and studies focusing on acute rather than chronic pain.
Final Sample
Abstracts of all 73 eligible papers were searched by hand to determine the measures employed in the study with parents of adolescents experiencing chronic pain. This resulted in the identification of 68 tools used to assess functioning and behavior of parents of adolescents with chronic pain. All of the identified instruments were obtained and primary articles and relevant manuals reporting their development, or the psychometric properties of the instruments, were also collected.
Analysis
All 68 instruments were classified using criteria used by the World Health Organization (World Health Organization, 1948) and more recently, by Rajmil et al. (2004). The World Health Organization defines health as "a state of complete physical, mental, and social well being and not merely the absence of disease or infirmity" (World Health Organization, 1966). In accordance with these criteria, primary scale content was used to classify measures into the following categories: physical, psychological, or social, with the addition of a multiple domain category.
In order to offer a concise evaluation of each of the 68 measures, a decision was made to only report information that would be most useful to an individual selecting a specific type of measurement tool. Many of the following types of evaluation were adapted from criteria which have been recently comprehensively summarized by Terwee et al. (2007) for the specific purpose of evaluating health status instruments. Firstly, information was recorded on the primary scale content of measures. Data were also noted with regard to sub-domains, total number of items, and type of report (e.g., self-report). Second, the derivation of each instrument was noted. More specifically, we were interested to know which instruments had been developed specifically for completion by parents of adolescents with chronic pain. Third, data were recorded with regard to the psychometric evaluation of each of the six identified measures. Of particular interest was whether measures had been investigated for their validity and reliability in measuring the experiences of individuals who parent an adolescent with chronic pain (e.g., parental functioning or parental behavior). Three tests of validity were recorded: construct, criterion, and content. Four tests of reliability were also recorded: temporal stability, internal consistency, sensitivity to change, and inter-rater reliability. A detailed description of these psychometric concepts can be found in the previous review study (Eccleston et al., 2006) and Terwee et al. (2007). Data were also noted regarding whether these 68 identified measures had undergone any type of reliability or validity analyses in any population. This search was not restricted to a population comprising parents, but incorporated an extensive range of populations (e.g., healthy adults, adolescents, and adult psychiatric populations). Finally, an analysis of the use of each instrument was undertaken using the ISI Web of Science© search engine. Each published study, and any identified subsequent studies concerning the use of a specific instrument, were tracked using Web of Science (Cawkell, 2000). Additional searches for later studies concerning the use of a specific instrument were also carried out using Psychinfo, Embase, Pubmed, and Cinahl to ensure that all incidences of use were identified. For each search, relevant publications were reviewed and all citations referring to a study that had employed one of the identified instruments, was noted. An overall raw score of each measure (number of studies employing an instrument) was recorded.
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Results |
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The review identified a total of 68 measures that had been used in a total of 73 studies with parents of adolescents experiencing chronic pain. Classification of the 68 measures using the WHO criteria (World Health Organization, 1948
), resulted in the following classifications; four measures (5.9%) in the physical domain, 32 measures (47.1%) in the psychological domain, 25 measures (36.8%) in the social domain, and finally, seven measures (10.3%) in the multiple domain category. Details of the 68 identified measures, their authorship and availability is provided in Table I.
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Measure Length and Frequency of Measure Usage in Published Studies
Table II presents a concise summary of the measure length and frequency of usage of the measures. The median number of items in each scale was 36, ranging from 4 (Relationship Questionnaire, RQ, Bartholomew & Horowitz, 1991
; Self-denigration Scale, Pearlin & Schooler, 1978; Caregiver Appraisal Scale, CAS, Thompson et al., 1993) to 566 (Minnesota Multiphasic Personality Inventory, MMPI, Dahlstrom & Welch, 1960). The most widely used measures were Symptom Checklist-90 Revised (SCL-90-R, Derogatis, 1983) and Family Environment Scale (FES, Moos & Moos, 1986), both of which were used in 14 studies (18.9%).
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Report of Measures
The majority of measures were self-report in format (N = 63). Ten of the measures included a clinician report format (often interview based), with a further 10 measures also including a child proxy report. Moreover, 10 of the measures included multiple report formats. Table III is available online and provides a summary of the overall characteristics of the measures and their psychometric evaluation with a population comprised of parents of adolescents with chronic pain.
Psychometric Evaluation of Measures in a Population Comprising Parents of Adolescents with Chronic Pain
Of the 68 measures reviewed, 27 (41.2%) have undergone at least one type of psychometric evaluation in a population of parents of adolescents who experience chronic pain. In total, 26 (38.2%) of the measures demonstrated adequate levels of internal consistency (between 0.7 and 0.9) using Cronbach's 
in a population of parents of adolescents with chronic pain. Assessment of internal consistency was the most common psychometric evaluation in this particular population. Only one measure investigated temporal stability and found it adequate (1.5%) (Illness Behavior Encouragement Scales, IBES, Walker & Zeman, 1992) and only three measures (4.4%) (IBES, Walker & Zeman, 1992; Semi-structured Interview of Parenting Problems, Ievers-Landis et al., 2001; Burden on the Family Schedule, Famuyiwa & Asuni, 1991) investigated inter-rater reliability and found it satisfactory in a parental population. None of the identified measures had been evaluated with respect to their ability to be responsive to change.
Very few measures were evaluated with regard to their validity for use with a population of parents of adolescents with chronic pain. No measures demonstrated adequate evidence of content validity in this specific population. One measure (1.5%) (PR-Pain, Wall et al., 1997) demonstrated adequate criterion validity in this particular population. A marginally larger number of measures (N = 4, 5.9%) demonstrated adequate levels of construct validity in a population of parents of adolescents with chronic pain (Database of Psychosocial Functioning, DPF, Crittle & Barbarin, n.d.; Family Relations Scale, FRS, Barbarin, 1996; Impact on the Family Scale, IOF, Stein & Reissman, 1980; PR-Pain, Wall et al., 1997).
Of the 27 measures that underwent a psychometric evaluation in a population comprising parents of adolescents experiencing pain, only seven of these measures were developed specifically for use with this population (Adult Response to Children's Symptoms, ARCS, Van Slyke & Walker, 2006; IBES, Walker & Zeman, 1992; PR-Pain, Wall et al., 1997; Burden on the Family Schedule, Famuyiwa & Asuni, 1991; DPF, Crittle & Barbarin, n.d.; Secondary Gain Measure, White et al., 2001; and Semi-structured Interview of Parenting Problems in Caring for a Child with Sickle Cell Disease, Ievers-Landis et al., 2001).
Measures Designed for use with a Population Comprising Parents of Adolescents with Chronic Pain
The seven measures developed specifically for use with a population comprising parents of adolescents with chronic pain were examined in greater detail. More comprehensive examination revealed the ARCS (Van Slyke & Walker, 2006) to be a newly developed and promising scale of parental response to child and adolescent chronic pain that was developed in the context of gastrointestinal pain. The ARCS is based on the significant other subscale of the West Haven Yale Multidimensional Pain Inventory (WHYMPI; Kerns, Turk, & Rudy, 1985) and the IBES (Walker & Zeman, 1992). Parents completing the ARCS are required to indicate how they "usually" respond when their child is experiencing pain. While some evidence exists for the validity of the protect subscale (Walker, Levy, & Whitehead, 2006), further evaluation of the validity of the remaining two subscales and the temporal reliability of all three subscales is required.
As the predecessor of the ARCS, the IBES (Walker & Zeman, 1992) is a well used measure with good psychometric properties. The measure requests that parents indicate how often they undertake a specific behavior when their child is experiencing pain (e.g., come home from work early to look after their child). A major advantage of this measure is that data exist concerning its use in a variety of populations comprising parents of children with varying diagnostic conditions and parents of healthy children, thus permitting cross-sample comparisons. Nevertheless, further evaluation of this measure would benefit from assessing the construct validity of the parent version of the IBES by means of comparison with appropriate measures of parental functioning and behavior.
The PR-Pain (Wall et al., 1997) is a promising, yet highly under utilized measure. Like the IBES (Walker & Zeman, 1992), the PR-Pain was also adapted from the significant other scale of the WHYMPI (Kerns et al., 1985) and asks parents to indicate their usual behavior in the context of their child's experience of pain. While the PR-Pain was developed with a sample of parents of children and adolescents with chronic headache, item content would lend itself to use with parents of young people with other chronic pain conditions. Despite initial psychometric evaluation of the measure demonstrating good evidence of the convergent and discriminant validity of the measure (Wall et al., 1997), future studies would benefit from evaluating the temporal stability of the measure and its ability to detect clinically meaningful change.
The DPF (Crittle & Barbarin, n.d.) is an unpublished measure that was developed in a large sample comprising parents of children and adolescents with sickle cell disease. The DPF is a semi-structured clinician administered interview of the familial impact of pediatric sickle cell disease. The DPF measures both parental and child functioning. The measure was developed in conjunction with health professionals responsible for treating pediatric sickle cell disease and reviews of existing measures such as the Child Behavior Checklist (CBCL, Achenbach, 1991). The DPF contains assessment of novel content such as parental stoicism and optimism. Exploratory factor analysis data provides some evidence of the construct validity of the measure, yet data are lacking concerning the temporal stability of the measure and its ability to detect clinically meaningful change.
The Burden on the Family Schedule (Famuyiwa & Asuni, 1991) was developed for use in a single study of Nigerian parents of children with sickle cell disease. Development of the measure included consultation with health professionals and piloting of the interview schedule with a small sample of mothers of children with sickle cell disease. The Burden on the Family Schedule comprises a semi-structured clinician administered interview, which assesses a variety of different domains of familial impact in the context of pediatric sickle cell disease. Psychometric evaluation of this measure comprises solely assessment of inter-rater reliability. If this measure is to be used in future studies, specific consideration should be given to establishing the validity and temporal stability of the Burden on the Family Schedule.
Similarly, the Semi-structured Interview of Parenting Problems in Caring for a Child with Sickle cell Disease (Ievers-Landis et al., 2001) was also developed for use in a single use study for use with parents of children with sickle cell disease. This measure requires parents to comment on the frequency of child rearing problems in particular domains (e.g., minimizing pain episodes), rate how challenging parents found these problems, and also rate their feelings of anger, worry, or distress when experiencing problems in particular domains. While the Semi-structured Interview for Parenting Problems in Caring for a Child with Sickle Cell Disease has demonstrated appropriate levels of inter-rater reliability, no further evaluation of its psychometric properties has been undertaken. Furthermore, this measure requires implementation in larger samples of parents of children and adolescents with sickle cell disease, and with populations comprising parents of older adolescents.
Finally, the Secondary Gain Measure (White et al., 2001) was developed for use in a single study with parents of children and adolescents with headache. The measure asks children and adolescents to report on how often their parents or primary caregivers typically undertake specific behaviors (e.g., try to comfort them) when the child has a headache. While the item content of this measure would suggest utility with parents of children and adolescents with other pain conditions (e.g., recurrent abdominal pain), future use of the measure would necessitate evaluation of both its reliability and validity for use with individuals who parent an adolescent with chronic pain.
Description of Studies Focusing on Exploring the Experience of Parenting an Adolescent with Chronic Pain
Only 26 of the 73 studies in the review (35.6%) were designed specifically to explore the experience of parenting an adolescent with chronic pain. The majority of these identified studies focussed jointly on exploring the adolescent's experience of living with chronic pain and the parental experience of parenting an adolescent with ongoing pain. A mere eight studies (11.0%) solely focused on exploring the experience of parenting an adolescent with chronic pain. A brief review of these studies identifies a focus on exploring parental mental health and general quality of life, in addition to more specific variables of parenting stress in the context of parenting an adolescent with chronic pain.
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Discussion |
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This study comprised of a review of 68 measures that have been used in 73 studies with parents of adolescents with chronic pain. Results revealed that the majority of identified instruments were developed in healthy adult populations or adult psychiatric populations. A minority of measures (N = 7) were developed with parents of adolescents with chronic pain (ARCS, Van Slyke & Walker, 2006
; IBES, Walker & Zeman, 1992; PR-Pain, Wall et al., 1997; Burden on the Family Schedule, Famuyiwa & Asuni, 1991; DPF, Crittle & Barbarin, n.d.; Secondary Gain Measure; White et al., 2001 and Semi-structured Interview of Parenting Problems in Caring for a Child with Sickle Cell Disease; Ievers-Landis et al., 2001). A further two measures were developed for use with parents of children and adolescents with chronic illness (Pediatric Inventory for Parents, PIP, Streisand et al., 2001; IOF, Stein & Riessman, 1980). Twenty-seven of the reviewed measures (39.7%) have been evaluated in a population containing parents of adolescents with chronic pain. The largest number of instruments is to be found measuring parental psychological well-being (N = 32; 47.1%) and parental social functioning (N = 25; 36.8%). Only a minority of measures assessed parental physical functioning (N = 4; 5.9%) or were multidimensional in nature (N = 7; 10.3%). The results of this review demonstrate important gaps in the psychometric evaluation of measures currently used with a population comprising parents of adolescents with chronic pain. Notably, only 27 of the 68 measures (39.7%) had any type of psychometric evaluation in this specific population. Furthermore, in 20 instances (29.4%), this psychometric evaluation involved only assessment of the internal consistency of the measure. Only one measure was assessed with regard to temporal reliability and no measures were evaluated with regard to their ability to detect clinically significant change in this particular parental population. Similar results were found in regard to the evaluation of the validity of measures in this population, with one measure providing evidence of criterion validity, no measures providing evidence of content validity, and only four demonstrating adequate evidence of construct validity. These findings highlight the fact that many measures used with populations comprising parents of adolescents with chronic pain have infrequently been evaluated in this particular population. While many of the reviewed measures have been evaluated in a general adult population and have demonstrated robust psychometric properties, fundamental differences exist between a general (often healthy), adult population, and parents of adolescents with chronic pain. Individuals who parent an adolescent with chronic pain experience challenges specific to their situation of parenting an adolescent with ongoing pain-related disability. These situational challenges influence parental concerns about their own mental health, anxiety about the ongoing and future health of healthy siblings within the family and, importantly, the manner in which individuals parent their adolescent with chronic pain. While a number of these experiences are common to parents of children and adolescents with chronic illness or even parents of healthy adolescents, there are a number of experiences that are unique to parents of adolescents with chronic pain. These include the experience of repeatedly searching for legitimacy of their adolescent's pain in the form of a diagnosis, a sense of being unable to progress with their own lives due to uncertainty regarding the progression of their child's often unrecognized pain condition, and the development of a parenting pattern developmentally similar to that of parenting a younger child.
Study findings have also identified a number of issues concerning domains of assessment. One issue concerns neglected domains of parental functioning. Only four measures assessed parental physical health, and of these four measures, one measure focused on assessing pain severity in the context of adult pain and the remaining three measures focused on somatization. Missing is an assessment of general parental physical functioning and health (e.g., sleep). Assessment of such constructs are important because, although little is known about the physical functioning of individuals who parent an adolescent with chronic pain, the pediatric chronic illness literature demonstrates affected parental functioning in this domain (Cottrell & Khan, 2005). Furthermore, an additional neglected area is that of partner or spousal relationships. Only the Locke Wallace Marital Adjustment Test (MAT; Locke & Wallace, 1959) contained a detailed analysis of this issue and this measure was used in a total of three studies. Such findings are surprising as a number of inventories with good psychometric properties have been used to assess spousal relationships in the context of adult chronic pain (e.g., MAT, Locke, & Wallace, 1959; Dyadic Adjustment Scale, DAS, Spanier, 1989). Research investigating the global parental experience of caring for an adolescent with chronic pain would benefit from using such measures to investigate the quality and satisfaction with spousal relationships. Reviewed measures also generally omitted any assessment of process variables such as cognitive–affective appraisal. For example, there has been a recent emphasis on parental catastrophic thinking about adolescent pain that positions such process variables as important to assess when explaining adolescent disability (Goubert, Eccleston, Vervoort, Jordan, & Crombez, 2006).
The results of this review also present implications for the breadth of content of existing measures. Eight measures featured in the multiple domains category. On examination, none of these eight measures provide a comprehensive self-report instrument for specific use with parents of adolescents with chronic pain. While the PIP (Streisand et al., 2001) is the most promising, it was developed for use with parents of children with cancer. Much of the item content concerns medical issues, many of which do not apply to parents of adolescents with chronic pain (e.g., spending long periods of time at the hospital). As the parental experience of caring for an adolescent with chronic pain appears to be unique, research in this field would benefit from the development of a multidimensional measure, which is specifically designed for use with parents of adolescents with chronic pain conditions (e.g., Jordan, Eccleston, McCracken, Connell, & Clinch, in press).
This review has raised a number of methodological issues relating to the use of existing measures. Firstly, despite identification of a large number of measures (N = 68), the modal and median statistics indicate that the majority of measures were used in single studies. This problem is further compounded by measures that were specifically developed for use in a particular study (e.g., DPF, Crittle & Barbarin, n.d.; PR-Pain, Wall et al., 1997). Lack of consensus regarding instrument usage measures raises problems when trying to combine data and draw cross-site comparisons. Further research would greatly benefit from developing recommendations regarding the use of appropriate measures with parents of adolescents with chronic pain.
There are some limitations to this study. First, although every effort was employed to identify all published studies, which included parents of adolescents with chronic pain, many studies did not explicitly state their inclusion of parental participants in the abstract or title. Therefore, it is possible that potentially relevant studies and eligible measures were missed. Second, our necessary cut-off date excluded recent instruments (e.g., Pain Catastrophizing Scale for Parents; PCS-P, Goubert et al., 2006). Third, the use of the WHO (1948) taxonomy to classify measures, although useful for international comparison, will appear relatively simplistic to some. A fourth limitation concerns the deliberate omission of observational measures that assess parental functioning and behavior in the context of adolescent chronic pain. A separate review of these observational measures would be helpful. A final yet important caveat is that many of these studies were not designed with parental functioning as the primary outcome, which may account for the instrument selection.
In summary, this review of measures has identified a number of problems faced by measures that are currently used with parents of adolescents with chronic pain. Primary problems relate to the lack of psychometric evaluation in this specific population, neglected areas of parental functioning, and a lack of consensus regarding measures to be used in this population. Results of this review suggest a need for adolescent pain researchers to develop a consensus regarding appropriate, widely available measures with good psychometric properties to be used with parents of adolescents with chronic pain. A similar consensus process has been undertaken in the context of clinical trials for pediatric pain, although parent measures were excluded (McGrath et al., manuscript in preparation). Furthermore, the results of this review suggest that future work in this field would benefit from the development of new, multidimensional, theoretically driven measures that are specific to issues faced by parents of adolescents with chronic pain.
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Supplementary data |
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Supplementary data are available at JPEPSY Online.
Conflicts of interest: None declared.
Received July 9, 2007; revision received December 10, 2007; accepted December 22, 2007
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