| Literature DB >> 25750785 |
Rebecca Hibbs1, Charlotte Rhind1, Hannah Sallis2, Elizabeth Goddard1, Simone Raenker1, Agnes Ayton3, Bryony Bamford4, Jon Arcelus5, Nicky Boughton6, Frances Connan7, Ken Goss8, Bert Lazlo9, John Morgan10, Kim Moore11, David Robertson12, Christa Schreiber-Kounine13, Sonu Sharma14, Linette Whitehead6, Hubert Lacey15, Ulrike Schmidt1, Janet Treasure1.
Abstract
Objective: Caring for someone diagnosed with an eating disorder (ED) is associated with a high level of burden and psychological distress which can inadvertently contribute to the maintenance of the illness. The Eating Disorders Symptom Impact Scale (EDSIS) and Accommodation and Enabling Scale for Eating Disorders (AESED) are self-report scales to assess elements of caregiving theorised to contribute to the maintenance of an ED. Further validation and confirmation of the factor structures for these scales are necessary for rigorous evaluation of complex interventions which target these modifiable elements of caregiving. Method: EDSIS and AESED data from 268 carers of people with anorexia nervosa (AN), recruited from consecutive admissions to 15 UK inpatient or day patient hospital units, were subjected to confirmatory factor analysis to test model fit by applying the existing factor structures: (a) four-factor structure for the EDSIS and (b) five-factor structure for the AESED.Entities:
Keywords: accommodation and enabling; burden; caregiving; confirmatory factor analysis; eating disorders
Year: 2014 PMID: 25750785 PMCID: PMC4346074 DOI: 10.1080/21642850.2014.894889
Source DB: PubMed Journal: Health Psychol Behav Med ISSN: 2164-2850
Demographic and clinical data of carers and service users.
| Variable | Service user ( | Carer | ||
|---|---|---|---|---|
| Mother ( | Father ( | Partner ( | ||
| M (SD) | M (SD) | M (SD) | M (SD) | |
| Agea | 26.0 (9.0) | 53.3 (7.3) | 54.9 (8.6) | 39.3 (12.1) |
| Female | 169 (94.9) | 144 (100) | 0 | 2 (7.1) |
| Male | 9 (5.1) | 0 | 81 (100) | 26 (92.9) |
| No qualification | 9 (5.2) | 13 (9.3) | 4 (5.1) | 2 (7.1) |
| O/A-levels | 89 (51.4) | 48 (34.3) | 25 (31.7) | 9 (32.1) |
| University/higher degree | 73 (42.2) | 64 (45.7) | 37 (46.8) | 17 (60.7) |
| Other | 2 (1.2) | 15 (10.7) | 13 (16.5) | 0 |
| Missing | 5 | 4 | 2 | 0 |
| Paid employed – full-time | 16 (9.2) | 41 (28.9) | 52 (65.8) | 16 (59.3) |
| Paid employed – part-time | 10 (5.7) | 44 (31.0) | 3 (3.8) | 5 (18.5) |
| Homemaker/unemployed/sick/retired | 95 (54.6) | 57 (40.1) | 24 (30.4) | 4 (14.8) |
| Student | 53 (30.5) | 0 | 0 | 2 (7.4) |
| Missing | 4 | 2 | 2 | 1 |
| Married/living together | 35 (20.3) | 111 (77.6) | 72 (91.1) | 22 (78.6) |
| Single/divorced/widowed | 137 (79.7) | 32 (22.4) | 7 (8.9) | 6 (21.4) |
| Missing | 6 | 1 | 2 | 0 |
| Primary carer | – | 140 (97.2) | 6 (7.4) | 26 (92.9) |
| Secondary carer | – | 4 (2.8) | 75 (92.6) | 2 (7.1) |
| Yes | – | 95 (66.4) | 50 (62.5) | 22 (78.6) |
| No | – | 48 (33.6) | 30 (37.5) | 6 (21.4) |
| Missing | – | 1 | 1 | 0 |
Notes: M, mean and SD, standard deviation.
a1 service user with missing age.
EDSIS questionnaire – weak invariance model, both unstandardised and standardised results are shown.
| Unstandardisedestimate | S.E. | Standardisedestimates | |||
|---|---|---|---|---|---|
| Primarycarers | Secondarycarers | ||||
| 18. Did you spend a long period of time shopping for food | 1.0 | – | – | 0.574 | 0.615 |
| 22. Did you check on her to ensure that she/he was ok | 0.656 | 0.098 | <.001 | 0.548 | 0.590 |
| 23. Did you notice or think about how the illness was affecting her/him physically | 0.946 | 0.139 | <.001 | 0.601 | 0.591 |
| 15. Were there arguments with other family members about how to handle mealtimes | 1.095 | 0.141 | <.001 | 0.632 | 0.695 |
| 24. Did you notice or think about how the illness was affecting her/him mentally | 0.697 | 0.096 | <.001 | 0.632 | 0.635 |
| 21. Did you have to turn up the heat due to her/him feeling cold | 0.949 | 0.14 | <.001 | 0.536 | 0.560 |
| 16. Were there arguments or tension during mealtimes | 1.198 | 0.142 | <.001 | 0.697 | 0.774 |
| 14. Did you experience difficulties preparing meals | 1.263 | 0.148 | <.001 | 0.722 | 0.683 |
| 8. Thinking that perhaps I was not strict enough | 1.0 | – | – | 0.436 | 0.523 |
| 5. Feeling that I should have noticed it before it became so bad | 1.471 | 0.205 | <.001 | 0.670 | 0.718 |
| 9. Thinking about where I went wrong | 1.621 | 0.208 | <.001 | 0.833 | 0.862 |
| 7. Feeling that there could have been something I should have done | 1.818 | 0.226 | <.001 | 0.937 | 0.943 |
| 6. Feeling that I have let her/him down | 1.835 | 0.232 | <.001 | 0.880 | 0.941 |
| 11. Controlling/manipulative | 1.0 | – | – | 0.853 | 0.742 |
| 20. Were there bad smells and poor hygiene in the bathroom | 0.279 | 0.099 | .005 | 0.210 | 0.186 |
| 17. Did food disappear from the cupboards | 0.388 | 0.115 | <.001 | 0.247 | 0.219 |
| 10. Physically and/or verbally aggressive | 0.821 | 0.073 | <.001 | 0.761 | 0.620 |
| 13. Out of control temper | 0.769 | 0.072 | <.001 | 0.702 | 0.705 |
| 12. Lying/stealing | 0.563 | 0.058 | <.001 | 0.643 | 0.565 |
| 19. Did you have difficulties with blocked drains, plumbing | 0.249 | 0.08 | .002 | 0.230 | 0.208 |
| 3. Feeling unable to go out for evenings, weekends or on holiday | 1.0 | – | – | 0.744 | 0.749 |
| 4. Cancelling or refusing plans to see friends or relations | 0.930 | 0.081 | <.001 | 0.758 | 0.763 |
| 2. Losing your friends | 0.865 | 0.103 | <.001 | 0.722 | 0.747 |
| 1. How your friends/relatives have stopped visiting | 0.979 | 0.117 | <.001 | 0.735 | 0.728 |
Note: Different standardised results are shown for primary and secondary carers since equal variances have not been imposed on the two groups.
EDSIS – weak invariance model, both unstandardised (covariance) and standardised (correlation) results displayed.
| Covariance | Correlation | ||||||
|---|---|---|---|---|---|---|---|
| Estimate | S.E. | Primarycarers | Secondarycarers | ||||
| Nutrition | <–> | Guilt | .110 | .035 | .002 | .278 | .235 |
| Nutrition | <–> | Dysregulated behaviour | .226 | .053 | <.001 | .367 | .403 |
| Nutrition | <–> | Social isolation | .273 | .06 | <.001 | .459 | .421 |
| Social isolation | <–> | Guilt | .133 | .039 | <.001 | .289 | .286 |
| Social isolation | <–> | Dysregulated behaviour | .283 | .059 | <.001 | .396 | .506 |
| Guilt | <–> | Dysregulated behaviour | .154 | .039 | <.001 | .323 | .383 |
AESED questionnaire – strict invariance model, both unstandardised and standardised results are shown.
| UnstandardisedEstimate | S.E. | Standardisedestimate | ||
|---|---|---|---|---|
| 25. How often did you participate in behaviours related to your relative's compulsions over the last week | 1.0 | – | – | 0.534 |
| 24. To what extent would you say that the relative with an ED controls family life and activities | 0.521 | 0.074 | <.001 | 0.576 |
| 26. How often did you assess your relative in avoiding things that might make him/her anxious | 0.868 | 0.125 | <.001 | 0.565 |
| 33. Has your relation become angry/abusive when you have not provided assistance | 1.207 | 0.161 | <.001 | 0.635 |
| 29. Have you modified your work schedule because of your relative's needs | 1.062 | 0.151 | <.001 | 0.578 |
| 32. Has your relative become distressed when you have not provided assistance | 1.430 | 0.171 | <.001 | 0.772 |
| 27. Have you avoided doing things, going places or being with people because of your relative's disorder | 1.301 | 0.16 | <.001 | 0.732 |
| 30. Have you modified your leisure activities because of your relative's needs | 1.291 | 0.159 | <.001 | 0.725 |
| 28. Have you modified your family routine because of your relative's symptoms | 1.315 | 0.158 | <.001 | 0.769 |
| 31. Has helping your relative in the previously mentioned ways caused you distress | 1.313 | 0.156 | <.001 | 0.784 |
| 8. Repeated conversations about ingredients and amounts in food preparation | 1.0 | – | – | 0.730 |
| 10. Repeated conversations about self-harm | 0.381 | 0.063 | <.001 | 0.401 |
| 9. Repeated conversations about negative thoughts and feelings | 0.989 | 0.088 | <.001 | 0.740 |
| 18. Accommodation of routines of checking their body shape or weight | 0.889 | 0.097 | <.001 | 0.602 |
| 6. Repeated questioning whether it is safe or acceptable to eat certain foods | 1.179 | 0.094 | <.001 | 0.820 |
| 5. Repeated questioning about whether she will get fat | 1.265 | 0.094 | <.001 | 0.878 |
| 7. Repeated seeking of reassurance about whether she looks fat in certain clothes | 1.215 | 0.094 | <.001 | 0.843 |
| 17. Accommodation of the exercise routine of the relative with an ED | 0.674 | 0.097 | <.001 | 0.463 |
| 13. Accommodating to what time food is eaten | 1.0 | – | – | 0.543 |
| 19. Accommodating to how the house is cleaned and tidied | 1.306 | 0.151 | <.001 | 0.758 |
| 14. Accommodating to what place food is eaten in | 1.063 | 0.142 | <.001 | 0.597 |
| 16. Accommodating to how food is stored | 1.491 | 0.157 | <.001 | 0.913 |
| 11. Accommodating to what crockery is used | 1.184 | 0.143 | <.001 | 0.695 |
| 12. Accommodating to how crockery is cleaned | 1.120 | 0.129 | <.001 | 0.765 |
| 15. Accommodating to how the kitchen is cleaned | 1.520 | 0.159 | <.001 | 0.932 |
| 1. Control choice of food that you buy | 1.0 | – | – | 0.762 |
| 2. Control what family members do and for how long in the kitchen | 1.144 | 0.092 | <.001 | 0.799 |
| 4. Control what other family members eat | 1.065 | 0.09 | <.001 | 0.766 |
| 3. Control cooking practice and ingredients used | 1.213 | 0.09 | <.001 | 0.868 |
| 21. Ignore if money is taken | 1.0 | – | – | 0.530 |
| 22. Ignore kitchen left in a mess | 3.296 | 0.386 | <.001 | 0.891 |
| 20. Ignore food disappearing | 2.652 | 0.348 | <.001 | 0.690 |
| 23. Ignore bathroom left in a mess | 3.326 | 0.392 | <.001 | 0.871 |
AESED questionnaire – strict invariance model, both unstandardised (covariance) and standardised (correlation) results displayed.
| Covariance | Correlation | |||||
|---|---|---|---|---|---|---|
| Estimate | S.E. | Estimate | ||||
| Avoidance and modifying routine | <–> | Control of family | .383 | .07 | <.001 | .575 |
| Avoidance and modifying routine | <–> | Meal ritual | .259 | .056 | <.001 | .466 |
| Avoidance and modifying routine | <–> | Turning a blind eye | .073 | .019 | <.001 | .35 |
| Avoidance and modifying routine | <–> | Reassurance seeking | .322 | .064 | <.001 | .476 |
| Control of family | <–> | Meal ritual | .364 | .073 | <.001 | .463 |
| Control of family | <–> | Turning a blind eye | .080 | .024 | <.001 | .271 |
| Control of family | <–> | Reassurance seeking | .426 | .081 | <.001 | .445 |
| Meal ritual | <–> | Turning a blind eye | .038 | .018 | .037 | .154 |
| Meal ritual | <–> | Reassurance seeking | .324 | .07 | <.001 | .407 |
| Reassurance seeking | <–> | Turning a blind eye | .058 | .023 | .012 | .192 |