Conventional methods of measuring quality of life that involve only a single-person perspective (i.e., caregiver) are unable to capture the full breadth of all of the persons, most often family members, who are affected by living with a person with a diagnosis of dementia.
In families with children with physical disabilities, four domains were reported to encompass family quality of life. These included: daily family life; family interaction; financial well-being; and parenting (Poston et al., 2003). In the oncology literature, concurrent family stressors; family social support; family member fear of recurrence; family meaning of the illness; and patient employment status were reported as the strongest predictors of family quality of life (Mellon & Northouse, 2001). What these studies have shown is that the number of problems experienced by both patients and caregivers is related to the levels of their distress.
1 male All white respondents Representing the Northwest, northeast, east, midwest, south, and southeast
The questionnaire also includes open-ended questions for items that impact family quality of life. for rating of items in terms of their relative importance for providing care and services that support family quality of life in dementia. The participants will report their response using a five-point Likert scale (1=not important to 5=extremely important). Also, participants will be given the opportunity to write in additional items that influence family quality of life.
Important to note: Relevant preliminary work in the field of family quality of life specific to dementia includes a recent study using qualitative research methods that was conducted to measure family and patient ( n =54) concerns at the time of an appointment for a loved one in a medical clinic for persons with dementia . Five domains of concerns were identified: family interactions; direct care/activities of daily living support; emotional/behavioral well-being; physical and cognitive well-being; and disease-related support/medical care (Geldmacher & Ducharme, unpublished data). At the end of the Delphi rounds, usually 2 to 5 in number, items are retained only if they achieve consensus at a certain set point and result in small standard deviations around the item mean. We used 3 rounds.
We are interested in knowing more about how having a family member with dementia has affected your family’s quality of life.” For persons with dementia, we want them to describe how they believe that their diagnosis of dementia impacts their family’s quality of life. The group interview will be held at a private location that is mutually agreed upon by the family members and the study staff (Co-PIs: Rose and Williams). In addition to participants’ homes, we have conference room space available for our use at the VPAS office in Waynesboro, VA. Each participant will be given a $15 gift card for compensation for their time to participate in the family group interview. It is estimated that the total time that will be required for each family group interview is 60 minutes. The time needed to complete the FQOL-D pilot instrument will add approximately 10-15 minutes, requiring a total amount of interview time of 60-75 minutes. Revised the wording of some items but did not delete any information already included from the consensus panel. 5 Families participated; 4 white 1 black; intended to interview both patient and caregiver family but changed protocol due to lack of substantive info from patient. Pilot study, nothing new was coming from interviews with family. All liked the survey and thought it was appropriate. Non-instutionalized;
Having a chance to talk to someone about their QoL was important for families. All patients were non-institutionalized.
Please take a few seconds to respond to this group question by using the question tab on your control panel. 1-2 min
Over 500 surveys were mailed out across the Commonwealth of Virginia; Throughout the Commonwealth of Virginia, 500 participants for the pilot-testing of the FQOL-D instrument portion of the study will be mailed the instruments Family APGAR scale Family Resource Scale Perceived Stress Scale FQOL-D instrument The Family Resource Scale is a 30-item measure of family resources, and was found to significantly correlate ( r = .60, p <.001) with the 5 items on the Physical/Material Well-Being domain of the FQOL scale for families of children with disabilities (Hoffman et al., 2006). The Family APGAR scale, a 5-item measure of family functioning, was found to be significantly correlated with the satisfaction mean for the Family Interaction FQOL subscale ( r = .87; p <.001)(Hoffman et al., 2006). Because these 2 instruments are reflective of the factors that we believe a priori (based upon pilot work of D. Geldmacher & J. Ducharme) will be included in our FQOL-D scale, the validation of our scale using these 2 instruments (Family Resource Scale and Family APGAR) are appropriate for use in assessing the psychometric properties of our FQOL-D instrument.
With so many items we need more people to validate the instrument.
AlzPossible Family Quality of Life Webinar Presentation
Ishan C. Williams, PhDKaren Rose, RN, PhD
Funding from The Alzheimer’s and Related Diseases Research Award Fund ◦ Administered by the Virginia Center on Aging at Virginia Commonwealth University. University of Virginia, School of Nursing Memory and Aging Care Center, University of Virginia, Drs. David Geldmacher and Carol Manning Dr. Jean Ann Summers, University of Kansas, Beach Center on Disability
An instrument to measure family quality of life in dementia was pilot tested. The test provided new insights into the content and psychometric properties of an instrument to measure family quality of life specifically related to the care of a person with dementia. Questions asked included:
Convened to reach consensus on the items to be addressed in a FQOL-D instrument SelectSurvey.net™, an electronic survey platform, was used to communicate with all of the consensus panel members, eliminating the need for hosting a meeting of the panel in person.
5 domains remained as relevant categories among families who care for persons with dementia:
Family group interviews ◦ Persons with mild-moderate stage dementia and their respective family members participated in a family group interview. ◦ The interviews were based upon the principles of conducting a qualitative descriptive study. ◦ The participants described the phenomena of how living with dementia and/or having a family member with a diagnosis of dementia and how this diagnosis impacts their family’s quality of life (Sandelowski, 2000).
Is there a need/benefit to include family members after they are no longer providing care for their loved one (institutionalization)? Why?Please type your response by using the “Questions” tab of your control panel on the right side of your screen.
Mailed surveys ◦ Local agencies and associations that cater to the target population of the study were contacted and asked to distribute surveys. ◦ Participants returned the surveys directly to the study by mail. All surveys were de-identified. Prepaid return envelopes, but no incentive included
Demographics (N=110) ◦ 74% Women ◦ 97% high school education or greater ◦ Majority were married (84%) ◦ 33% working full or part-time ◦ 96% were White American ◦ 39% said they lived in a small rural town, rural area, or on a farm/ranch Relationship to Person with memory loss ◦ 49% were spouses; 28% adult children ◦ 56% live with the person with memory loss
42 item questionnaire developed to measure Family Quality of Life when one family member has dementia (FQOL-D) Total of 50 responses (42 items) ◦ Two items had multiple responses Item 31 (a, b, c, d) Item 33 (a, b, c, d, e, f)
Some items did not reflect situations experienced by numerous families, and thus were dropped. For example: ◦ Item 10, “Changes in behavior and mood of family member with dementia impacts our family.” Some caregivers reported that person with dementia no longer had changes in mood or behavior. ◦ Item 23, “As a caregiver I have uninterrupted time at work.” Many caregivers did not have outside work.
Meeting Needs forIndividual & Family Function Persons with ADItem Loading Item LoadingFamily talks openly about .764 Family has time to care for .786difficult issues needs of person with dementiaFamily supports each other .748 Family helps person with .727to accomplish goals dementia make good decisionsFamily able to accept .638differences of opinion Family helps person with .647 dementia with ADLsFamily appreciates my .425 Person with dementia has .498contributions as caregiver support to thrive in environment
Individual & Family Function ◦ Cronbach’s alpha = .937 Meeting Needs for Persons with AD ◦ Cronbach’s alpha = .895 Total Scale Score ◦ Cronbach’s alpha = .944
Lack of diversity in survey sample Small number of participants to date ◦ More data is needed Next steps ◦ Validate the FQOL measure with two instruments known to correlate with Family function and physical and material well-being
Do you believe that our results will change based upon adding (recruiting) a more diverse sample? If so, how so? If not, why not?Please type your response by using the “Questions” tab of your control panel on the right side of your screen.
Data obtained from this study may benefit study participants as well as society in general, as these data will lead researchers and clinicians to a better understanding of what constitutes family quality of life in dementia. Results from this study will be used to plan programs to enhance family quality of life for persons with dementia and will also be used to revise a clinical instrument to be used to measure this construct. Editorial: Rose, K.; Williams, I. (2011). Family matters: Family quality of life in dementia. Journal of Gerontological Nursing, 36(6), 3-4.
If you have ideas or suggestions, please contact us: Ishan C. Williams, PhD firstname.lastname@example.org Karen Rose, RN, PhD email@example.com
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