Development of the BRIGHTLIGHT Caregiver Questionnaire (BCQ)
Development of the content of the BCQ
The content for the BCQ was derived from existing questionnaires developed for carers of adults with cancer1-5. The content was developed by a research fellow experienced in working with parents of children with cancer, with input from an experienced cancer nurse and children’s nurse. The structure of the BCQ was carried out in collaboration with the commercial research company who were administering the BRIGHTLIGHT Cohort
questionnaires. Content validity was established through administering the BCQ alongside a structured questionnaire rating the relevance of each item and whether corrections were needed to the wording. Additional space requested details of potential missing items. The draft BCQ was also completed by two nurses, two oncologists and the BRIGHTLIGHT lead for patient and public involvement. The draft BCQ was confirmed as comprehensive and minor changes were made to some of the questions and items. The BCQ was further reviewed in a focus group including six parents/significant others during the feasibility work, who did not request any changes to the BCQ and confirmed a paper version as being the preferred mode of administration.
Establishing the reliability and validity of the BCQ-5D
Due to the large quantity of indicators extractable from the BCQ, it was considered
appropriate to conduct principal component analysis (PCA) for the reduction of the analysed dimensions to be explained. Based on an initial set of 22 indicators chosen a priori for the potential to be influenced by specialist care (Table A), the PCA technique extracted five principal components that explained 60% of the total variance. The initial solution was rotated using the Varimax method to improve the regrouping of indicators in each of the extracted components. Having tested the statistical significance and substantive logic validity of the obtained results, the factorial scores were then extracted using the Regression
method. The resulting scores used to measure each of the indicators from the scales were then synthesised into five latent dimensions, to be used as dependent variables in the subsequent regression analysis. According to the PCA we considered five dependent variables (domains):
(1) Support received (economic, psychological, professional, etc.) (2) Satisfaction with support (friendliness, access, privacy, etc.) (3) Information provided
(4) Opportunities to make decisions about treatment (5) Service provided for caregivers
For a better interpretation of these indices, variables were normalised in a scale from 0
‘lower support/satisfaction/information provided’ to 100 ‘higher support/satisfaction/information provided’.
Table A: The items selected from the BCQ for the BCQ-5D Questio
n number
Question
1b1 Information about... young person's emotional needs 1e1 Information about... the needs of carer/partner
1f1 Information about... likely outcome of cancer treatment 1g1 Information about... support services for carer/partner 1i1 Information about... how to care on a practical level 1k1 Information about... financial support
7a2 How poor or good... opportunity given to me about making decisions about treatment
7b2 How poor or good... opportunity given for the young person to make decisions about treatment
7c2 How poor or good ... choice of suitable appointment times
7d2 How poor or good... time given by professionals to listen to my concerns 7e2 How poor or good... time given by professionals to listen to me
7f2 How poor or good... level of privacy given to the young person 7g2 How poor or good... provision of food for carers and visitors
7h2 How poor or good... access to professionals for carer and young person 7i2 How poor or good... the friendliness of professionals
7j2 How poor or good... leisure spaces in the cancer centre for carers and visitors to go
8a3 How helpful or unhelpful... putting me in touch with other parents/carers 8c3 How helpful or unhelpful... directing me to sources of support to help access
state benefits
13c4 What extent do you feel you've had support... fertility prospects
13f4 What extent do you feel you've had support... emotional and psychological wellbeing
13g4 What extent do you feel you've had support... future ability to continue with studies or job
15b4 What extent do you feel you have had support... manage the psychological consequences of cancer
15e4 What extent do you feel you have had support... balance the YP care with job/studies
Response formats: 1Yes/No; 2Very good, fairly good, fairly poor, very poor, not applicable; 3Very helpful, fairly helpful, not very helpful, not at all helpful, not applicable; 4I usually had the support I need, I sometimes had the support I need, I have never had the support I need
The initial solution was rotated using the Varimax method to improve the regrouping of indicators in each of the extracted components (Table B). All of the factorial coefficients exceeded ±0.30, the cut-off value at which coefficients are considered to be statistically relevant.
Table B. Rotate matrix with five components
Main factors
F1 F2 F3 F4 F5 What extent do you feel you've had support... future ability to continue with
studies or job
.813 .108 .201 .194 .080
What extent do you feel you've had support... emotional and psychological wellbeing
.790 .172 .224 .195 .100
What extent do you feel you have had support... provide financial assistance to the YP
.756 .148 .107 -.152 .128
What extent do you feel you've had support... fertility prospects .750 .134 .097 .279 .112 What extent do you feel you have had support... balance the YP care with
job/studies
.742 .164 .153 -.088 .136
What extent do you feel you have had support... manage the psychological consequences of cancer
.718 .212 .181 .148 .077
How poor or good... time given by professionals to listen to my concerns .168 .791 .134 .273 .000
How poor or good... the friendliness of professionals .139 .733 .174 -.023 .138
How poor or good... time given by professionals to listen to me .186 .699 .196 .362 .017 How poor or good... access to professionals for carer and young person .244 .658 .230 .066 .215 How poor or good... level of privacy given to the young person .166 .555 .010 .167 .269
Information about... young person's emotional needs .182 .093 .690 .292 -.102
Information about... the needs of carer/partner .216 .096 .668 .190 .180
Information about... support services for carer/partner .171 .066 .635 .056 .302
Information about... how to care on a practical level .081 .062 .591 .028 .067
Information about... financial support .143 .221 .565 -.085 .206
Information about... likely outcome of cancer treatment .091 .218 .542 .055 -.268
How poor or good... opportunity given to me about making decisions about treatment
.165 .201 .206 .787 .165
How poor or good... opportunity given for the young person to make decisions about treatment
.098 .344 .107 .752 .129
How poor or good... leisure spaces in the cancer centre for carers and visitors to go
.095 .154 .050 .008 .755
How poor or good... provision of food for carers and visitors .154 .138 .069 .149 .646 How helpful or unhelpful... putting me in touch with other parents/carers .230 .157 .323 .173 .495
Table C. Variance explained by each factor
Facto r
Name/description of dimension for every factor % Variance
explained % Variance Accumulated .
F1 Support received (economic. psychological. professional. etc.) 17.8% 17.8%
F2 Satisfaction with support (friendliness, access, privacy, etc.) 13.2% 31.0%
F3 Information provided 12.6% 43.5%
F4 Opportunities to make decisions about treatment 8.3% 51.8%
F5 Service provided for carers 7.9% 59.7%
Analysis to determine the internal consistency of the BCQ-5D indicates acceptable Cronbach’s alpha.
Table D. Internal consistency of the BCQ-5D
Factor Description of latent dimension Cronbach’s
F1 Support received 0.893
F2 Satisfaction with support 0.819
F3 Information provided 0.738
F4 Opportunities to make decisions 0.787
F5 Service provided for carers 0.608
Total BCQ-5D 0.910
Discriminatory validity was confirmed with good/very good item total correlation (Table E).
Scale mean if item deleted
Scale variance if item deleted
Corrected item total correlation
Cronbach’s alpha if item deleted Information about... young person's emotional
needs (miss mean)
0.000 155.548 0.488 0.904
What extent do you feel you've had support...
emotional and psychological wellbeing
0.000 151.567 0.680 0.900
What extent do you feel you have had support...
manage the psychological consequence 0.000 153.511 0.611 0.902
Information about... financial support (miss mean) 0.000 156.258 0.458 0.905 How helpful or unhelpful... directing me to sources
of support to help access statebenefits 0.000 155.333 0.548 0.903
What extent do you feel you have had support...
provide financial assistance to 0.000 156.514 0.495 0.904
Information about... likely outcome of cancer
treatment (miss mean) 0.000 159.871 0.309 0.908
Information about... how to care on a practical level (miss mean)
0.000 159.042 0.348 0.907
What extent do you feel you've had support...
fertility prospects (miss mean)
0.000 153.529 0.599 0.902
What extent do you feel you've had support... future
ability to continue with st 0.000 152.801 0.639 0.901
What extent do you feel you have had support...
balance the YP care with job/stu 0.000 155.551 0.537 0.903
Information about... the needs of carer/partner
(miss mean) 0.000 154.108 0.552 0.903
Information about... support services for carer/partner (miss mean)
0.000 155.712 0.483 0.905
How helpful or unhelpful... putting me in touch with other parents/carers (miss
0.000 156.920 0.522 0.904
How poor or good... opportunity given for the young
person to make decisions abo 0.000 155.479 0.499 0.904
How poor or good... opportunity given to me about
making decisions about treatme 0.000 155.373 0.543 0.903
How poor or good ... choice of suitable appointment
times (miss mean) 0.000 155.037 0.514 0.904
How poor or good... time given by professionals to listen to my concerns (miss m
0.000 153.316 0.582 0.902
How poor or good... time given by professionals to listen to me (miss mean)
0.000 152.862 0.612 0.902
How poor or good... level of privacy given to the
young person (miss mean) 0.000 156.120 0.462 0.905
How poor or good... provision of food for carers and
visitors (miss mean) 0.000 159.123 0.378 0.907
How poor or good... access to professionals for
carer and young person (miss mea 0.000 152.587 0.617 0.902
How poor or good... the friendliness of professionals (miss mean)
0.000 154.920 0.511 0.904
How poor or good... leisure spaces in the cancer centre for carers and visitors
0.000 159.926 0.340 0.907
References
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2. Buscemi V, Font A, Viladricht C. Focus on relationship between the caregivers unmet needs and other caregiving outcomes in cancer palliative care. Psicooncologia.
2010;7: 109-125.
3. Hodgkinson K, Butow P, Hobbs KM, Wain G. After cancer: The unmet supportive care needs of survivors and their partners. J Psychosoc Oncol. 2007;25: 89-104.
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European Journal of Cancer Care. 2001;10: 261-269.
5. Ream E, Pedersen VH, Oakley C, Richardson A, Taylor C, Verity R. Informal carers' experiences and needs when supporting patients through chemotherapy: A mixed method study. European Journal of Cancer Care. 2013;22: 797-806.
