Purpose: To develop and test the face and content validity of a scale that assesses an individual’s adaptation and expression of hope to a life changing events, disease or trauma. Method: The Hope and Adaptation Scale was developed and tested across three stages. Stage 1 involved the use of a review of literature to conceptually map the tool. Stage 2 required exploratory investigations of the questionnaire by members of an expert panel. Stage 3 assessed the construct validity of the resulting scale. Results: Through the processes of Stage 1 and 2, the tool was developed and reduced to a 3-item scale that assessed a spectrum of hope-related responses and a spectrum of adaptation-related responses. Stage 3 identified fifteen independent health care professionals who assessed the scale. The content validity index of the resultant scale was 0.6 that was above the required level to be acceptable. The hope spectrum responses scored the highest content validity ratio (0.73). Discussion: The proposed scale appears to have face and content validity for application to a various number of events, disease or trauma experiences. Further testing of the scale is required for application in specific population groups.
An individual’s expression of hope is a natural response to a situation where there is temptation to despair. Hope that prevails is influenced by, and intertwined with, one’s ability to accept their situation, where an embracement of the situation can allow consolidation with it eventually [
Within, and central to, the adaptation spectrum of responses is the concept of acknowledgement. Acknowledgement exists and is expressed in the process of adaptation before an individual embraces or fully accepts what has happened within their present situation [
The ability to (re)engage and access meaningful interactions and activities, including one’s paid employment, sporting group, or social group, directly impacts an individual’s mental well-being [
Whilst it is important to consider hope it is also important to consider the need for a measure that can capture experiences of hopelessness. The main reason for this is because hopelessness can follow the experience of severe and significant consequences of a disease or illness [
Previous clinical tools that consider hope have several items for instance the Herth Hope Index has 12 items [
Can a questionnaire that considers generalised hopes of individuals with chronic illnesses be developed to assess their ability to cope with the illness or succumb to it?
To iteratively develop a clinical scale to identify the vulnerability of individuals with chronic illness, in succumbing to despair and hopelessness following exposure to an EDT.
To determine the face and content validity of the proposed scale
This study was based on a guidance framework for validation studies [
The first author undertook a narrative review of literature. Review articles were identified from the author’s personal database. Reviews were included if: (a) the aims and focus of the review included any concepts from a recently developed model of psychological adjustment, emotion and hope [
An online survey (qualtrics.com) was set up to consider the face validity of the initial tool and provide ideas for development. The survey considered two domains: (1) demographical information which included; gender, age, area of expertise, professional group, and years worked in main clinical/research area. (2) Domain 2 considered open and closed questions identifying, developing and assessing the proposed scale area of focus and content. The scale development questions included; (a) if the questions asked would relate to the main group of patients they worked with (yes/no, with opportunity to explain), (b) if they would use the scale for the purpose of research or clinical practice (yes/no), (c) awareness of other scales that may already exist that capture the same content, (d), what are the main observations about the scale and are there any changes that could be suggested, (e) are there any areas or items of the scale that could be removed and (f) are the any areas or items of the scale that could be added.
A purposive sample of individuals was selected to be part of the expert panel. The primary author sent 15 individual email requests to become a member of the expert panel. The individuals were identified as having extensive clinical experience and patient contact within different areas of practice. To be included on the expert panel individuals had to have at least 5 years clinical and/or academic experience including patient contact from a range of clinical specialities. Two clinicians were targeted to increase the breath of expertise and two individuals with expertise in the development of outcome measures and validation studies were identified.
The tool was developed across 3 rounds (from January 2016 to March 2016). Round 1 established the areas of investigation that could be considered for the initial version of the tool using a structured survey (see above). This identified the key areas to focus on and requirements and suggestions for modification of the proposed tool. Individuals were emailed the tool and required to respond within a period of a month. Two reminder emails were sent after a period of a week and 2 weeks. Round 2 provided a chance to make major modifications to the revised tool, individual emails were sent with the revised tool details and requests were made to consider the tool for revision within a period of 2 weeks. Round 3 repeated the same procedure as round two but was an opportunity to make minor modifications to the scale and once ready assess the construct validity within stage 3.
Ethical approval was obtained from the University of Birmingham (ethics reference number (ERN_15-0545).
A convenience sample of clinicians was asked to assess the validity of each item of the scale.
An online survey was used to consider the content validity [
A convenience sample of clinicians were included if: (a) They work with individuals who have suffered the following chronic illnesses: motor neurone disease; stroke; multiple sclerosis; Parkinson’s disease; COPD; chronic pain; cardiac rehabilitation; arthritis; severe and enduring mental illness. (b) Had an interest and feel able to comment and rate the items used in the assessment. (c) Considered their experience working with patients expectations, goals or hopes. Finally (d) had at least a year’s clinical experienced patients with major depression and other mood disorders.
Descriptive statistics and content analysis were undertaken. Responses were pooled and the number indicating essential for each item was documented. A content validity ratio (CVR) of all questions/items individuals was calculated, as well as a mean of all items (Content Validity Index: CVI). The validity of each question/item and an overall rating was thus made based on the CVR and CVI. The minimum score required for the CVI was determined by a pre-existing table for interpretation [
Broad consideration from previously published literature that had considered the expression and levels of hope was identified [
Study | Review type | Methods | Key findings relating to psychological adaptation, emotion and hope |
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Soundy et al. [ | Systematic review and thematic synthesis | Total number of studies: 47 Chronic illnesses included: Multiple sclerosis Total included participants: 1146 (812 females, 265 males, and 69 unknown) Average age: 49 years (30/47 studies) Average time since diagnosis: 12.3 years (28/47 studies) | Adaptation Related Reponses Adaptive responses related to a spectrum of response around the concept of acknowledgement, from transcendence or embracement to rejection or denial. Hope Responses Full spectrum of hope related responses were identified around the concept of hope, from concrete or certain hope to no hope or an inability to hope. Emotional Response Identifiable distinct emotional states were documented. This illustrated a spectrum of emotions expressed by participants. Key emotions associated with hope and adaptive responses. There was a prevalence of pleasant activated responses and unpleasant de-activated response identified. |
Soundy et al. [ | Meta-ethnography | Total number of studies: 10 Chronic illnesses included: Spinal cord injury, stroke, multiple sclerosis Total included participants: 102 Aggregated age: not given. Aggregated time since diagnosis: not given. | Adaptation Related Reponses Acceptance was identified as central concept to well-being where extreme expressions of adaptation focus on rejection or denial related responses. Hope as a paradox (see below) could also illustrate adaptive responses. Hope Responses Hope described in different ways; (1) as a dichotomy from no hope to concrete hope, (2) as a paradox (the expression of hope contains and is associated with acceptance and simultaneously defiance), which contained loss related expressions, hope as possibility and active hope or hopes relating to challenges. (3) Hope as transcendence was identified where embracement of what happens occurs and/or changes in patients’ values. Different factors can influence hope, including environmental, internal or social. Emotional Response Emotions associated with hope and adaptation responses. Emotional response may be less after time. |
Soundy and Condon [ | Systematic review with thematic synthesis | Total number of studies: 29 Chronic illnesses included: Motor Neurone Disease Total included participants: 342 patients diagnosed with MND (175 male, 117 female, 50 unknown) Aggregated age: not reported. Aggregated time since diagnosis: not reported. | Adaptation Related Reponses Association between hope, adaptation and coping was identified. Acceptance was identified as a critical response and related spectrum adaptation responses were identified. Self-determined responses were distinguished from disease controlling responses within a model of hope enablement. Hope Responses Model of hope enablement established with succumbing response and coping responses implicated. Critical factors that influence hope/hopelessness identified including; interactions and relationships, internal psychological factors and negative emotions. A hope spectrum response was identified. Generalised and particularised hopes identified. Hope responses linked to coping responses. Emotional Response Shock related emotions identified and associated with adaptive responses and hope related responses of individuals. |
Soundy et al. [ | Narrative review | Total number of studies: 10 Chronic illnesses included: Stroke Total included participants: 110 (44 male, 68 female) Aggregated age: not given. Aggregated time since diagnosis: not given. | Adaptation Related Reponses The paradox of chronic illness identified the spectrum of adaptive expressions. Hope Responses Spectrum of hope related responses identified as well as responses relating to the paradox of chronic illness. A generalised hope framework was identified. Factors that influence hope/hopelessness including environmental, political, internal and psychological as well as social identified. Emotional Response Shock related emotions identified and associated with hope and adaptation. |
Soundy et al. [ | Meta-ethnography | Total number of studies: 37 Chronic illnesses included: Parkinsons Total included participants: 582 individuals (male = 246, female = 192, unknown = 124) Aggregated age: 70 years Aggregated time since diagnosis: not given. | Adaptation Related Reponses A full spectrum of adaptation related responses were identified from embracement to rejection responses. Critical identification for the role of acknowledgement and acceptance. Factors that influence adaptation and hope identified including internal psychological, physical and social factors were identifed. Hope Responses Internal psychological, social and religious factors that influence hope/hopelessness were identified. The association between hope and adaptation was identified. A model of hope was provided. Emotional Response Emotional responses identified and were linked with adaptation related responses. |
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Soundy et al. [ | Narrative review | Total number of studies: 17 Chronic illnesses included: Stroke (n = 10) and Spinal Cord Injury (n = 7) Total included participants: not identified. Aggregated age: not given. Aggregated time since given: | Adaptation Related Reponses Acceptance and transcending views of illness identified as critical factors that influence hope. Hope Responses Factors that influence hope/hopelessness were identified and included internal psychosocial, social and environmental/political. Emotional Response Distinct emotions were identified, including mainly unpleasant emotions. The adaptation response linked to patients’ emotions. |
Soundy et al. [ | Systematic review with thematic synthesis | Total number of studies: 20 Chronic illnesses included: Schizophrenia Total included participants: 585 Aggregated age: not given. Aggregated time since diagnosis: not given. | Adaptation Related Reponses Acceptance and transcendence or value changes were identified as critical factors that influence recovery. Hope Responses Factors that influence hope/hopelessness were identified including internal psychological, social and environmental. The importance of hope was identified for patients. Emotional Response Some negative distinct emotions were identified within review. |
Within the first round, the expert panel judged the originally proposed scale to be too long and to be covering too broader areas of work. Essential domains of assessment were identified as adaptation and hope and it was considered the questionnaire had to allow a patient to identify their own problem. Given this, the scale was reduced to three essential questions (see Appendix 1) which were assessed in round 2 and 3. No major changes were made to the scale following its proposal, rather minor wording and typographical changes were identified in both rounds. This final version of the scale was sent to the expert panel to check wording and accuracy. Given the above, the final three questions considered: (1) Identifying the aspect of adaptation that was most difficult to deal with, (2) identifying if the individual was hopeful that this chosen aspect could be overcome in the future, and (3) identifying if they perceived themselves able to adapt to this situation. Appendix 1 provides the final questionnaire. Supplementary file 1 provides details of the scoring of the questionnaire.
Sixteen health care professionals (8 female, with a mean age of 37.4 ± 10.6 years and mean clinical experience of 8.9 ± 5.3 years, comprising 9 physiotherapists, 1 nurse, 2 psychologists, 1 occupational therapist, 1 speech and language therapist and 2 other health professionals, completed the assessment. Individuals were working in the following areas: neurology (n = 3), mental health (n = 5), musculoskeletal practice (n = 3), respiratory (n = 1), other (n = 4) and completed a rating of each question from the scale.
The CVR for question 1, naming the difficulty, was 0.63 with 13 (13/15, 81%) respondents identifying it as an essential question. The CVR for question 2, identifying the hope associated with the situation, was 0.75 with 14 (14/16, 88%) of respondents identifying it as an essential question. The CVR for question 3, identifying the ability to adapt to the difficulty, was 0.5 with 12 (12/16, 75%) of respondents identifying it as an essential question. Given the above CVR scores, the overall CVI for the scale was 0.63, which was above the minimal acceptable value of 0.49 [
The current study has developed a brief scale that is able to capture essential self-defined ratings of adaptation and hope, and is able to consider the effects of loss generated from an EDT. The content validation demonstrates the scale has face validity and acceptable levels of content validity. Interestingly the content validation identified higher ratings for the hope item and lower ratings for the adaptation item.
The primary application of the scale, based on the previous publications used to develop the scale (see stage 1), for individuals who have suffered a chronic neurological illness. However, given that the concepts identified are relevant within a wide range of illness such as sickle cell disease [
For the clinician, both the spectrum of hope and adaptation responses can be identified as underlying common narratives identified from patients who suffer from chronic illness, for example, of 13 common narratives identified within patients who have suffered a neurological disease [
The choice given to the patient regarding the difficulty they are experiencing, means the scale may have much broader application than just chronic illness. For instance, the application of the scale could be utilised with other stakeholders affected by an EDT, such as children, partners and parents of individual with traumatic brain injuries as they also experience difficulty adjusting and coping with the condition [
The wording of the scale links to the most difficult factor the patient is experiencing. However, it is possible multiple difficulties could be identified. Due to the simplicity of the scale and time required to complete it would be possible for a clinician to use the scale in this way. The ability to study and consider what is meaningful and provides enjoyment for the patient is essential for the patient’s mental well being [
Previous theory in the area has identified the importance of both a cognitive and emotional response to illness [
The scale has been generated primarily based on a body of literature that considers chronic illness in patients with neurological conditions. The application outside these studies is dependent upon validation in different populations and with established psychometrically supported clinical tools.
The HAS scale appears to have face validity and adequate content validity. The application of the scale is potentially wide and has the potential to be validated in other populations following a varied nature of events, diseases and conditions which influence or challenge individual’s mental well-being.
Andrew Soundy,Simon Rosenbaum,Tracey Elder,Derek Kyte,Brendon Stubbs,Laura Hemmings,Carolyn Roskell,Johnny Collett,Helen Dawes, (2016) The Hope and Adaptation Scale (HAS): Establishing Face and Content Validity. Open Journal of Therapy and Rehabilitation,04,76-86. doi: 10.4236/ojtr.2016.42007
Version 3.0
Please answer the following questions relating to your process of adaptation and hope. The questions will relate to an aspect of your current situation that you are finding difficult to adapt too. Examples of this include adapting to the following; losses from a chronic illness, changes or losses in relationships in the work place, socially or at home, the inability to be independent, and the loss of an identity like being an athlete or father. Your own words will be used for the follow up assessments regarding this difficulty.
1. Please name the one aspect of your adaptation that you are finding most difficult?
Prompt: Importantly this question is about you and how you feel and what you consider to be difficult?there is no right or wrong answer.
I am finding _____________________________________________________________ most difficult to adapt to.
2. Regarding the difficulty you have identified how hopeful are you right now that you can or will overcome it?
3. Regarding the difficulty you have identified do you feel able to adapt to it right now?