4.7.6.1 Family Support Scale (FSS)(Dunst, Trivette & Cross 1986)
The Family Support Scale (FSS) is an 18-item inventory designed to measure the amount of perceived support that is provided to the carer.(Dunst, Trivette & Cross 1986) It uses a five point scale from 1 ‘not at all helpful’ to 5 ‘extremely helpful’. There is an additional option of ‘not applicable’ scoring 0 on the scale for support that is not available to the family.(Taylor & Others 1993) Summing the scores from the 18 items provides a total score, ranging from 0-90, depicting the number of sources of support available to the carer within the past 3-6 months.(Dunst, Trivette & Cross 1986; Hanley et al. 1998)The higher the score, the more support the family receives.(Glenn et al. 2009; Taylor & Others 1993)
Using the 18-item FSS, different researchers have created different subgroups as a means of mapping the helpfulness of the support that is being given to the family.(Hanley et al. 1998; Hastings et al. 2002) Dunst originally created six subgroups of support but altered it to five subgroups.(Dunst, Trivette & Cross 1986) Taylor altered the five subgroups to only four different groups of support.(Taylor & Others 1993)However, Hanley et al found that a five factor made more clinical sense compared to other suggested subgroups.(Hanley et al. 1998) This present study is using five subgroups as formulated by Dunst (Dunst, Trivette & Cross 1986) and which has been used in other studies, range of scores shown in the brackets:(Hanley et al. 1998; Hassall, Rose & McDonald 2005) formal kinship (0-15), informal kinship (0-25), social groups (0-10), professionals (0-20) and professional groups (0-20).
Hanley et al demonstrated good internal consistency, 0.85 and test rest correlation of 0.73 for the total FSS score using a population size of 244.(Hanley et al. 1998) Dunst et al demonstrated from a sample of 137 participants that the test-retest reliability was 0.91 after a 1-month duration.(Dunst, Trivette & Cross 1986) Sheeran et al found that in a study involving 97 parents of children with epilepsy or cerebral palsy, the internal consistency was 0.87.(Sheeran, Marvin & Pianta 1997) Darling et al found that the internal consistencies for the five subgroups, ranged from 0.48-0.87 when used for the study’s population of 120 caregivers to children who had a disability.(Darling & Gallagher 2004)
The validity of the FSS was investigated by Taylor et al, using a population of 990 parents of whom 97% had a child diagnosed with a disability. This study found that
there was a negative correlation between the FSS and stress within a spousal
relationship, investigated through the Parenting Stress Index.(Taylor & Others 1993) Hassal et al correlated the FSS to the Parenting Stress Index (PSI) and found an inverse relationship between the two (r=-0.485, p=0.001).(Hassall, Rose & McDonald 2005) Darling et al correlated FSS to family needs and also established that a negative correlation occurred (r=-0.319).(Darling & Gallagher 2004)
4.7.6.2 Family Needs Survey (FNS) (Bailey & Simeonsson 1988)
The Family Needs Survey is a 35-item self-report questionnaire. It was originally developed to assess the functional needs of parents who had young handicapped children.(Bailey & Simeonsson 1988) The needs assessed are: information (7 items), support (8 items), financial (6 items), explaining to others (5 items), community (3 items), child-care (3 items) and professional support (3 items).(Bailey & Simeonsson 1988)
This is an instrument that has been used in assessing needs of parents who have a child with a chronic condition.(Bailey & Simeonsson 1988; Cate, Kennedy & Stevenson 2002) It is an important element to assess as unmet needs have been associated as a source of stress for families, and those caring for a child with a chronic condition display high levels of unmet needs. Farmer et al displayed this by reporting that 93% of the 83 parents asked who had a child with a chronic condition, felt that they had at least one unmet need.(Farmer et al. 2004) It was designed by Bailey et al as a way for parents to express their needs at the time of when a family care plan was to be implemented.(Bailey & Blasco 1990) Therefore, it is an important tool to include within this present study, as it will assess whether parents feel that they have unmet needs as well as facilitating the future aim of the study, which is to provide relevant support for the families that have a child with a potential or new diagnosis of epilepsy.
The scoring of the questionnaire varies across the studies that have used it. Bailey et suggested that a scoring of 1-2-3 should be used, with the highest score indicating that the individual felt that this was a need of theirs.(Bailey & Simeonsson 1988) Other studies who have adopted this scoring have only reported upon the items that were scored as a ‘3’ in order to assess the definite needs felt by the individual who was
completing the questionnaire.(Cate, Kennedy & Stevenson 2002; Farmer et al. 2004) In order to determine definite needs, a scoring of 0-0-1 was employed by Trute et al, allowing for a clear assessment in the areas that the individual felt represented an unmet need.(Trute & Hiebert-Murphy 2005) This was the scoring used by this present study.
The rating of the scale is 0-0-1; 0 indicating that the carer does not need help or is unsure as to whether or not they need help with the item being enquired about, with 1 indicating a definite need for further assistance. Therefore, the higher the score, the more unmet needs being expressed by the carer.(Trute & Hiebert-Murphy 2005) For the purpose of this study, three areas of need being assessed are of particular interest as they represent the needs that could be provided for within a clinical setting. These are information needs, resource needs and counselling needs. Based upon the study by Trute et al, a 30-item analysis of the FNS will be performed to assess counselling, resource and information needs said to be definitely required by the carer. (Trute & Hiebert-Murphy 2005)
Within the 30-item FNS, 3 items will assess counselling needs, 20 items will assess resource needs and 7 items will assess the carer’s information needs. This provides a range of 0-30 for the total number of needs, with the range of scores for each subgroup being as follows: Information (0-7), Resource (0-20) and Counselling (0-3).
High internal consistencies have been demonstrated by previous studies when examining the total FNS score. Sexton et al finding that the internal consistency of the FNS was 0.91 when applied to 53 mothers who had a child with a disability.(Sexton, Burrell & Thompson 1992) Farmer et al also found a high internal consistency, with their study recording the internal consistency to be 0.88.(Farmer et al. 2004) Bailey et al reported that over a 6-month period, the test-retest reliability was 0.67 when given to a sample of 68 parents.(Bailey & Simeonsson 1988)
Trute et al found from their study of 102 mothers that the internal consistencies for the three subgroups being used in this present study were; 0.87 for counselling needs, 0.84 for resource needs and 0.78 for information needs. Test-retest reliability after a 2-week period was also performed using the same subgroups, with the results being 0.90, 0.80 and 0.79 for the respective counselling, resource and information needs.(Trute & Hiebert-Murphy 2005)