DOI: 10.1111/ajag.12163
Research Beyond family satisfaction: Family-perceived involvement in residential care Justine Irving Palliative and Supportive Services, Flinders University of South Australia, Adelaide, South Australia, Australia
Aim: To explore perceived family involvement and its relationship with satisfaction and facility impressions. Method: A questionnaire was posted to residents’ next of kin from four South Australian residential aged care facilities. Results: One hundred and fifty next of kin participated in the survey. Family-perceived involvement was significantly and positively correlated with satisfaction and facility impressions. Conclusion: The findings of this study add to the limited body of research into family involvement in long-term residential care. Feedback from the family regarding particular aspects of involvement may also improve the experience of long-term care for both family and resident, and assist with the identification of specific issues towards which organisations may target their quality improvement efforts. Key words: aged care, family involvement, long-term care, nursing home, residential aged care, satisfaction.
Introduction Despite the assumption that the caregiving role is relinquished once an older person is placed into full-time care, most family members remain deeply involved in and committed to maintaining the well-being of the resident [1,2]. The acts of caring endure through visiting, monitoring care and well-being, assistance with feeding, laundry and clothing maintenance, provision of mental stimulation, management of finances, and medical appointment arrangements and decisions [2,3]. Family members will try to maintain a sense of ‘personhood’ for their loved one and continuity of their relationship and life prior to placement [4]. In addition, it is important to family that the resident is treated as an individual and not as a member of a generic group [5]. Family involvement is considered an important aspect of providing individualised care to people living in residential aged care. Family members can provide critical insight into the resident’s history, preferences, personality and values [6,7]. Family members are often keen to maintain an ongoing Correspondence to: Ms Justine Irving, Palliative and Supportive Services, Flinders University of South Australia. Tel: +61 8 7225 5729; Email: [email protected] 166
relationship with the resident by seeking to oversee the quality of care, to remain informed about changes and to have an involvement in care that is not limited to practical task assistance or initial care planning [8]. Research suggests that family involvement may facilitate greater interaction between staff and family, reduce misunderstandings, provide opportunities for meaningful communication, improve satisfaction with care [7,8] and produce higher care quality ratings [9]. Most of the research regarding family experience with residential care undertaken to date has focused on family satisfaction with care in this setting, and the degree of involvement from the perspective of the family remains effectively unmeasured [7]. Traditional indicators of family involvement have been based on frequency of visits or the extent to which family contribute to instrumental caregiving tasks, neither of which accurately encapsulate what the relative contributes in the long-term aged care setting [3]. However, if undertaken effectively, measures of family involvement and the importance of this involvement can provide specific information to organisations which they can respond to accordingly. The aim of the current study was to explore the relationships between perceived involvement in long-term residential care, satisfaction with care and services, and facility impressions from the perspective of the family members. The study was also intended to capture those particular aspects of involvement considered most important by this group. Study findings add to the limited research regarding family-perceived involvement and extend beyond existing measures of satisfaction alone. This information may improve the experience of long-term care for both family and residents and better facilitate resident individualised care. Feedback from the family regarding particular aspects of involvement will also provide facilities with specific areas or activities towards which they can target their quality improvement efforts.
Methods Design and setting A South Australian aged care and retirement living provider was approached and agreed to participate in the study. The provider identified four of their facilities as research sites, varying in size from 53 beds to 101 beds and offering both low and high care in each setting. Australasian Journal on Ageing, Vol 34 No 3 September 2015, 166–170 © 2014 ACOTA
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Participants Administrative staff mailed out a hard copy of a selfcomplete questionnaire to each resident’s nominated next of kin as recorded within facility admission records. Recruitment was not based on resident characteristics. Measures The survey requested information on a range of items including length of resident stay, satisfaction with care and services, impressions of the aged care facility, visitation frequency, family-perceived involvement, and importance of this involvement. Measures of satisfaction with a range of care and service aspects were captured through eight items with a four-point Likert scale of responses ranging from very dissatisfied to very satisfied. Impressions of the aged care facility were captured using an 11-item scale with a five-point Likert scale of responses ranging from strongly disagree to strongly agree. An existing tool, Family Perceived Involvement in Individualized Long-Term Care Instrument [7], was contained within the questionnaire to gather information on the perceived level, type and importance of family involvement in the care of the resident. Family involvement is operationalised by two scales: family-perceived involvement (F-INVOLVEMENT) and the importance family assigns to this involvement (F-IMPORTANCE). The F-INVOLVEMENT scale comprises 18 items that explore the level of agreement in regard to a range of statements such as ‘Staff have created opportunities for me to meaningfully participate in my family member’s day’ and ‘I feel like I am involved in the decision making about my family member’s care when he or she cannot make decisions themselves’. Level of agreement was recorded through a four-point Likert scale of responses ranging from strongly disagree to strongly agree. The degree of importance the family member assigned to aspects of involvement was captured through the F-IMPORTANCE scale comprising 18 statements such as ‘Being asked about my family member’s preferences and values’ and ‘Feeling like my family member is well cared for’. Level of importance was recorded through a four-point Likert scale of responses ranging from not at all important to very important. The Family Perceived Involvement in Individualized LongTerm Care Instrument was designed for and tested with family members of people with dementia in residential aged care. Rather than alter the content of the existing scales, participants were asked to ignore the questions specific to dementia if not applicable to the resident. In addition, two questions related to preparation for resident death were removed based on an earlier unpublished study undertaken within a regional aged care setting in which participants reported these questions to be confronting, and a high non-response rate was recorded. The study received ethical approval from Flinders University of South Australia’s Social and Behavioural Research Ethics Committee. Australasian Journal on Ageing, Vol 34 No 3 September 2015, 166–170 © 2014 ACOTA
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Analyses All surveys received were coded, entered into and analysed using SPSS Version 20.0. A sum score for each scale (F-INVOLVEMENT, F-IMPORTANCE, satisfaction with care and service, and facility impressions) was derived from the scales in which all items recorded a response. Those response scales that were incomplete were included in a single-item comparison analysis only. Reliability of the F-INVOLVEMENT and F-IMPORTANCE scales for the present study was tested using Cronbach’s alpha coefficient. Based on Barker and colleagues’ [10] reliability descriptors, both scales produced good reliability with F-INVOLVEMENT and F-IMPORTANCE having a Cronbach’s alpha of 0.91 and 0.92, respectively.
Results The questionnaire was posted out to 318 residents’ next of kin and 150 completed surveys were returned, a response rate of 47%. Table 1 presents survey respondent characteristics. Of those respondents who nominated sex, women formed a greater proportion than did men (64.7% compared with 32.0%), and the most frequently recorded relationship to the resident was that of a daughter or son (72.7% of the sample). The average age of participants was 62.4 years (standard deviation (SD) 9.7), with the youngest respondent being 37 years and the eldest being 89 years. The length of resident stay reported was an average of three years and five months (SD 2.9) with the shortest time period recorded of 1 month and the longest stay recorded of 15 years. The majority of respondents reported visiting their family member more than once a week or at least once a week (58.0% and 22.7%, respectively). Barriers to increased visitation provided by respondents in response to an open text question included distance to residential facility, living interstate, inadequate access to transport, full-time employment, family commitments and distress at seeing their resident family member deteriorate.
Table 1: Respondent characteristics (n = 150) Measure Sex (n = 145) Relationship to resident
Frequency of visits
Male Female Husband/wife/partner Daughter/son Brother/sister Grandson/granddaughter Other (e.g. niece, nephew, cousin or friend) More than once a week At least once a week A couple of times a month About once a month Every couple of months Once or twice a year
n†
%
48 97 17 109 5 1 13 87 34 13 3 6 5
32.0 64.7 11.3 72.7 3.3 0.7 8.7 58.0 22.7 8.7 2.0 4.0 3.3
†May not total to 150 respondents because of missing responses for some questions.
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Table 2: Relationship between family satisfaction, facility impressions and perceived involvement
Table 3: Relationship between individual items within the F-INVOLVEMENT, family satisfaction and impressions
Measure
Measure
Overall facility impressions Total satisfaction
Family-perceived involvement
Overall satisfaction
0.66* 0.66*
0.83* —
*P < 0.01 level.
A total for involvement was computed for respondents who had completed all 18 items within the F-INVOLVEMENT scale (n = 47). A total for satisfaction and facility impressions was computed for respondents who had completed all respective scale items (n = 126 for each). Through application of Pearson correlation analysis, the relationships between perceived involvement, overall satisfaction and facility impressions were analysed (Table 2). Perceived involvement was positively and significantly correlated with both overall satisfaction with care and services with r(44) = 0.66, P < 0.001 and impressions of the facility with r(46) = 0.66, P < 0.001. Overall satisfaction and facility impressions were also positively and significantly correlated r(117) = 0.83, P < 0.001. Additional correlation analysis found no statistically significant relationship between satisfaction and perceived involvement with sex, relationship, length of resident stay or participant’s age. Table 3 presents the individual items with in the F-INVOLVEMENT scale and their relationship with overall satisfaction with care and services and the impressions of the facility. Through application of Pearson correlation analysis, all 18 items within the F-INVOLVEMENT scale were positively and significantly correlated with both overall satisfaction with care and services and impressions of the facility. The highest correlation with overall satisfaction with care and services was reported for the items ‘I feel like my family member is well cared for’ with r(120) = 0.66, P < 0.001 and ‘I trust the staff members at this facility’ with r(119) = 0.60, P < 0.001. The highest correlation with overall impressions of the facility was also reported for the items ‘I feel like my family member is well cared for’ with r(121) = 0.70, P < 0.001 and ‘I trust the staff members at this facility’ with r(118) = 0.62, P < 0.001. Table 4 presents the mean score for each item within the F-IMPORTANCE scale (within the range of 1–5). The highest mean scores for individual data items were recorded for ‘Feeling like my family member is well cared for’ (mean (M) = 3.9), ‘Trusting the staff members at this facility’ (M = 3.9) and ‘Being informed about changes in my family member’s care plan’ (M = 3.8).
Staff have created opportunities for me to meaningfully participate in my family member's day. I have been asked about my family member's personal history. I have been asked about family member's preferences and values. Staff have helped me to understand how dementia affects my family member. I am able to dine with my family member if I want to. I have been asked to bring in pictures, letters and other personal items to teach staff about my family member. I feel like I am involved in the decision making about my family member's care when he or she cannot make decisions for themselves. Staff have taught me how to communicate with my family member as the condition has progressed. The facility has a support group. I was introduced to different staff members at the facility when my family member was admitted. Staff explained to me the rules and procedures at the facility upon admission. Administrators have asked my opinions about the quality of care provided at this facility. The facility holds family information meetings. I feel like my family member is well cared for. I trust the staff members at this facility. I am informed about changes in my family member's care plan. Staff have helped me to understand the difficult behaviours that my family member sometimes exhibits. I feel comfortable phoning staff members and talking to them about how my family member is doing.
Overall satisfaction
Overall impressions
0.43*
0.50*
0.40*
0.48*
0.45*
0.48*
0.38*
0.40*
0.29*
0.29*
0.29*
0.39*
0.47*
0.52*
0.36*
0.49*
0.37* 0.25*
0.45* 0.36*
0.45*
0.48*
0.43*
0.48*
0.23**
0.26*
0.66*
0.70*
0.60* 0.49*
0.62* 0.48*
0.43*
0.44*
0.40*
0.38*
*P < 0.01 level. **P < 0.05 level. F-INVOLVEMENT, family-perceived involvement.
aged care facilities. Most of the research undertaken to date has focused on family satisfaction with care, or family involvement defined as frequency of visits and type of activities undertaken [7]. The aim of this study was to explore the relationship between family-perceived involvement in longterm residential care, and satisfaction and impressions of the care provided in this setting. The study was also designed to collect information on those elements of involvement that were considered most important to the family member. Undertaking the study across four residential aged care sites from within a single provider group helped to standardise potential variation in service delivery and quality across facilities.
Discussion Family involvement is considered an important aspect of providing individualised care to people living in residential 168
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Table 4: Means scores reported for individual items within the F-IMPORTANCE Measure Staff creating opportunities for me to meaningfully participate in my family member's day Being asked about my family member's personal history Being asked about family member's preferences and values Staff helping me to understand how dementia affects my family member Being able to dine with family member if I want to Being asked to bring in pictures, letters and other personal items to teach staff about my family member Being involved in decision making about my family member's care when he or she cannot make decisions for themselves Staff teaching me how to communicate with my family member as the condition has progressed Having a support group at the facility Being introduced to different staff members at the facility when my family member was admitted Staff explaining rules and procedures at the facility to me upon admission Administrators asking my opinions about the quality of care provided at this facility The facility holding family information meetings Feeling like my family member is well cared for Trusting the staff members at this facility Being informed about changes in family member's care plan Staff helping me to understand difficult behaviours that my family member sometimes exhibit Feeling comfortable phoning staff members and talking to them about how my family member is doing
Mean (out of a maximum of 5) 2.82 3.09 3.38 3.35 2.85 2.88 3.76 3.26 2.89 3.40 3.59 3.45 3.04 3.92 3.91 3.83 3.53 3.77
F-IMPORTANCE, importance family assigns to family-perceived involvement.
and services and impressions of the aged care facility. Family-perceived involvement was not significantly associated with any other variables collected such as sex, relationship, length of resident stay and participant age. All individual items within the F-INVOLVEMENT scale displayed a positive and significant relationship with overall satisfaction and facility impressions. However, the strongest relationships focused on the family feeling that the resident family member was well cared for, that they had trust in the staff and were involved in the decisions regarding the resident family member’s care. Analysis of the F-IMPORTANCE items found that feeling the resident family member was well cared for, having trust in the facility staff and being informed about changes in the family member’s care plan were considered the most important elements of involvement by the family. Those aspects of involvement considered to be less important were staff creating opportunities for meaningful participation in their family member’s day and being able to dine with the resident family member when desired. Family involvement can have different meanings in different contexts and change over time. Particularly, for a prior carAustralasian Journal on Ageing, Vol 34 No 3 September 2015, 166–170 © 2014 ACOTA
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egiver, the physical role of caring may change to that of advocate, emotional supporter and protector of resident dignity and identity. The present study was designed to address non-instrumental aspects of family involvement, and the findings align with similar literature that defines how families prefer to be involved with the care of their resident family member. Studies have found that family members who participated more in assistance with activities of daily living were less satisfied with the residential care and that families did not wish to increase their level of involvement in resident hands-on care [8,11–14]. Rather, greater value is placed on being able to provide non-instrumental support such as advocacy, advice on resident preferences and care oversight, while trusting that day-to-day task management is undertaken by appropriately qualified residential care staff. The provision of information and support from the residential staff and the opportunity to participate in decision-making have also been positively associated with a perception of higher quality in similar studies [9].
Study limitations The F-INVOLVEMENT and F-IMPORTANCE tools were designed for and tested with family members of those residents with dementia. The questionnaire distribution method did not allow for resident characteristics to be taken into account and therefore, a number of next of kin participated in the survey whose family member did not have dementia. Participants were asked to not respond to those questions that were specific to dementia (two within each scale), which therefore affected the number of scales completed in their entirety and able to be included in subsequent analysis. In addition, the residential facilities included in this study were metropolitan and may not represent the views of family members in a remote or rural setting.
Conclusions The findings of this study add to the limited body of research into family involvement in long-term residential care from the perspective of the family member. To date, literature in this area has been largely qualitative and with small sample groups. The information in this study has been derived through the application of a multi-item, reliable measure that is able to produce quantitative data. This in turn can provide the organisation with specific and actionable information with which to review their practices where appropriate and target efforts towards those aspects of involvement that are most important to the family members in this setting.
Acknowledgements The author wishes to thank sincerely Eldercare for their support in undertaking this study. The author would also like to acknowledge the guidance and direction provided by Dr Sandra Davis of Flinders University of South Australia.
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Key points • Family involvement is an important element of providing individualised care to people living in residential aged care facilities but remains effectively unmeasured. • In the present study, family-perceived involvement was significantly and positively correlated with satisfaction and impressions of the facility. • Feeling the resident family member was well cared for, having trust in the facility staff and being informed about changes in the resident family member’s care plan were considered the most important elements of involvement by the family. • Feedback from the family regarding particular aspects of involvement may also improve the experience of long-term care for both family and resident and assist with identification of specific issues towards which organisations may target their quality improvement efforts.
3 4 5 6 7 8 9 10 11 12 13
References 1
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Ford GL. Life after placement: Experiences of older rural caregivers after placing a family member into residential care. Rural and Remote Health 2008; 8: 1–10.
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Garity J. Caring for a family member with Alzheimer's disease: Coping with caregiver burden post-nursing home placement. Journal of Gerontological Nursing 2006; 32: 39–48. Whitaker A. Family involvement in the institutional eldercare context. Towards a new understanding. Journal of Aging Studies 2009; 23: 158–167. Sandberg J, Lundh U, Nolan MR. Placing a spouse in a care home: The importance of keeping. Journal of Clinical Nursing 2001; 10: 406–416. Bramble M, Moyle W, McAllister M. Seeking connection: Family care experiences following long term dementia care placement. Journal of Clinical Nursing 2009; 18: 3118–3125. Boise L, White D. The family's role in person centred care. Practice considerations. Journal of Psychosocial Nursing 2004; 42: 12–20. Reid CR, Chappell NL, Gish JA. Measuring family perceived involvement in individualized long-term care. Dementia (Basel, Switzerland) 2007; 6: 89–104. Russell H, Foreman PE. Maintaining a relationship with a family member in a nursing home: The role of visitor. Journal of Family Studies 2002; 8: 147–164. Voutilainen P, Backman K, Isola A, Laukkala H. Family members' perceptions of the quality of long term care. Clinical Nursing Research 2006; 15: 135–149. Barker C, Pistrang N, Elliott R. Research Methods in Clinical Psychology. An Introduction for Students and Practitioners, 2nd edn. West Sussex: John Wiley & Sons, 2002. Ejaz FK, Noelker LS, Schur D, Whitlatch CJ, Looman WJ. Family satisfaction with nursing home care for relatives with dementia. Journal of Applied Gerontology 2002; 21: 368–384. Hertzberg A, Ekman S, Axelsson K. Staff activities and behaviour are the source of many feelings: Relatives' interactions and relationships with staff in nursing homes. Journal of Clinical Nursing 2001; 10: 380–388. Ryan AR, Scullion HF. Family and staff perceptions of the role of families in nursing homes. Issues and Innovations in Nursing Practice 2000; 32: 626–634. Tornatore JB, Grant LA. Family caregiver satisfaction with nursing home after placement of a relative with dementia. Journals of Gerontology Series B: Psychosocial Sciences and Social Sciences 2004; 59B: S80–S88.
Australasian Journal on Ageing, Vol 34 No 3 September 2015, 166–170 © 2014 ACOTA
Research Beyond family satisfaction: Family-perceived involvement in residential care Justine Irving Palliative and Supportive Services, Flinders University of South Australia, Adelaide, South Australia, Australia
Aim: To explore perceived family involvement and its relationship with satisfaction and facility impressions. Method: A questionnaire was posted to residents’ next of kin from four South Australian residential aged care facilities. Results: One hundred and fifty next of kin participated in the survey. Family-perceived involvement was significantly and positively correlated with satisfaction and facility impressions. Conclusion: The findings of this study add to the limited body of research into family involvement in long-term residential care. Feedback from the family regarding particular aspects of involvement may also improve the experience of long-term care for both family and resident, and assist with the identification of specific issues towards which organisations may target their quality improvement efforts. Key words: aged care, family involvement, long-term care, nursing home, residential aged care, satisfaction.
Introduction Despite the assumption that the caregiving role is relinquished once an older person is placed into full-time care, most family members remain deeply involved in and committed to maintaining the well-being of the resident [1,2]. The acts of caring endure through visiting, monitoring care and well-being, assistance with feeding, laundry and clothing maintenance, provision of mental stimulation, management of finances, and medical appointment arrangements and decisions [2,3]. Family members will try to maintain a sense of ‘personhood’ for their loved one and continuity of their relationship and life prior to placement [4]. In addition, it is important to family that the resident is treated as an individual and not as a member of a generic group [5]. Family involvement is considered an important aspect of providing individualised care to people living in residential aged care. Family members can provide critical insight into the resident’s history, preferences, personality and values [6,7]. Family members are often keen to maintain an ongoing Correspondence to: Ms Justine Irving, Palliative and Supportive Services, Flinders University of South Australia. Tel: +61 8 7225 5729; Email: [email protected] 166
relationship with the resident by seeking to oversee the quality of care, to remain informed about changes and to have an involvement in care that is not limited to practical task assistance or initial care planning [8]. Research suggests that family involvement may facilitate greater interaction between staff and family, reduce misunderstandings, provide opportunities for meaningful communication, improve satisfaction with care [7,8] and produce higher care quality ratings [9]. Most of the research regarding family experience with residential care undertaken to date has focused on family satisfaction with care in this setting, and the degree of involvement from the perspective of the family remains effectively unmeasured [7]. Traditional indicators of family involvement have been based on frequency of visits or the extent to which family contribute to instrumental caregiving tasks, neither of which accurately encapsulate what the relative contributes in the long-term aged care setting [3]. However, if undertaken effectively, measures of family involvement and the importance of this involvement can provide specific information to organisations which they can respond to accordingly. The aim of the current study was to explore the relationships between perceived involvement in long-term residential care, satisfaction with care and services, and facility impressions from the perspective of the family members. The study was also intended to capture those particular aspects of involvement considered most important by this group. Study findings add to the limited research regarding family-perceived involvement and extend beyond existing measures of satisfaction alone. This information may improve the experience of long-term care for both family and residents and better facilitate resident individualised care. Feedback from the family regarding particular aspects of involvement will also provide facilities with specific areas or activities towards which they can target their quality improvement efforts.
Methods Design and setting A South Australian aged care and retirement living provider was approached and agreed to participate in the study. The provider identified four of their facilities as research sites, varying in size from 53 beds to 101 beds and offering both low and high care in each setting. Australasian Journal on Ageing, Vol 34 No 3 September 2015, 166–170 © 2014 ACOTA
bs_bs_banner
F a m i l y
i n v o l v e m e n t
Participants Administrative staff mailed out a hard copy of a selfcomplete questionnaire to each resident’s nominated next of kin as recorded within facility admission records. Recruitment was not based on resident characteristics. Measures The survey requested information on a range of items including length of resident stay, satisfaction with care and services, impressions of the aged care facility, visitation frequency, family-perceived involvement, and importance of this involvement. Measures of satisfaction with a range of care and service aspects were captured through eight items with a four-point Likert scale of responses ranging from very dissatisfied to very satisfied. Impressions of the aged care facility were captured using an 11-item scale with a five-point Likert scale of responses ranging from strongly disagree to strongly agree. An existing tool, Family Perceived Involvement in Individualized Long-Term Care Instrument [7], was contained within the questionnaire to gather information on the perceived level, type and importance of family involvement in the care of the resident. Family involvement is operationalised by two scales: family-perceived involvement (F-INVOLVEMENT) and the importance family assigns to this involvement (F-IMPORTANCE). The F-INVOLVEMENT scale comprises 18 items that explore the level of agreement in regard to a range of statements such as ‘Staff have created opportunities for me to meaningfully participate in my family member’s day’ and ‘I feel like I am involved in the decision making about my family member’s care when he or she cannot make decisions themselves’. Level of agreement was recorded through a four-point Likert scale of responses ranging from strongly disagree to strongly agree. The degree of importance the family member assigned to aspects of involvement was captured through the F-IMPORTANCE scale comprising 18 statements such as ‘Being asked about my family member’s preferences and values’ and ‘Feeling like my family member is well cared for’. Level of importance was recorded through a four-point Likert scale of responses ranging from not at all important to very important. The Family Perceived Involvement in Individualized LongTerm Care Instrument was designed for and tested with family members of people with dementia in residential aged care. Rather than alter the content of the existing scales, participants were asked to ignore the questions specific to dementia if not applicable to the resident. In addition, two questions related to preparation for resident death were removed based on an earlier unpublished study undertaken within a regional aged care setting in which participants reported these questions to be confronting, and a high non-response rate was recorded. The study received ethical approval from Flinders University of South Australia’s Social and Behavioural Research Ethics Committee. Australasian Journal on Ageing, Vol 34 No 3 September 2015, 166–170 © 2014 ACOTA
i n
r e s i d e n t i a l
c a r e
Analyses All surveys received were coded, entered into and analysed using SPSS Version 20.0. A sum score for each scale (F-INVOLVEMENT, F-IMPORTANCE, satisfaction with care and service, and facility impressions) was derived from the scales in which all items recorded a response. Those response scales that were incomplete were included in a single-item comparison analysis only. Reliability of the F-INVOLVEMENT and F-IMPORTANCE scales for the present study was tested using Cronbach’s alpha coefficient. Based on Barker and colleagues’ [10] reliability descriptors, both scales produced good reliability with F-INVOLVEMENT and F-IMPORTANCE having a Cronbach’s alpha of 0.91 and 0.92, respectively.
Results The questionnaire was posted out to 318 residents’ next of kin and 150 completed surveys were returned, a response rate of 47%. Table 1 presents survey respondent characteristics. Of those respondents who nominated sex, women formed a greater proportion than did men (64.7% compared with 32.0%), and the most frequently recorded relationship to the resident was that of a daughter or son (72.7% of the sample). The average age of participants was 62.4 years (standard deviation (SD) 9.7), with the youngest respondent being 37 years and the eldest being 89 years. The length of resident stay reported was an average of three years and five months (SD 2.9) with the shortest time period recorded of 1 month and the longest stay recorded of 15 years. The majority of respondents reported visiting their family member more than once a week or at least once a week (58.0% and 22.7%, respectively). Barriers to increased visitation provided by respondents in response to an open text question included distance to residential facility, living interstate, inadequate access to transport, full-time employment, family commitments and distress at seeing their resident family member deteriorate.
Table 1: Respondent characteristics (n = 150) Measure Sex (n = 145) Relationship to resident
Frequency of visits
Male Female Husband/wife/partner Daughter/son Brother/sister Grandson/granddaughter Other (e.g. niece, nephew, cousin or friend) More than once a week At least once a week A couple of times a month About once a month Every couple of months Once or twice a year
n†
%
48 97 17 109 5 1 13 87 34 13 3 6 5
32.0 64.7 11.3 72.7 3.3 0.7 8.7 58.0 22.7 8.7 2.0 4.0 3.3
†May not total to 150 respondents because of missing responses for some questions.
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Table 2: Relationship between family satisfaction, facility impressions and perceived involvement
Table 3: Relationship between individual items within the F-INVOLVEMENT, family satisfaction and impressions
Measure
Measure
Overall facility impressions Total satisfaction
Family-perceived involvement
Overall satisfaction
0.66* 0.66*
0.83* —
*P < 0.01 level.
A total for involvement was computed for respondents who had completed all 18 items within the F-INVOLVEMENT scale (n = 47). A total for satisfaction and facility impressions was computed for respondents who had completed all respective scale items (n = 126 for each). Through application of Pearson correlation analysis, the relationships between perceived involvement, overall satisfaction and facility impressions were analysed (Table 2). Perceived involvement was positively and significantly correlated with both overall satisfaction with care and services with r(44) = 0.66, P < 0.001 and impressions of the facility with r(46) = 0.66, P < 0.001. Overall satisfaction and facility impressions were also positively and significantly correlated r(117) = 0.83, P < 0.001. Additional correlation analysis found no statistically significant relationship between satisfaction and perceived involvement with sex, relationship, length of resident stay or participant’s age. Table 3 presents the individual items with in the F-INVOLVEMENT scale and their relationship with overall satisfaction with care and services and the impressions of the facility. Through application of Pearson correlation analysis, all 18 items within the F-INVOLVEMENT scale were positively and significantly correlated with both overall satisfaction with care and services and impressions of the facility. The highest correlation with overall satisfaction with care and services was reported for the items ‘I feel like my family member is well cared for’ with r(120) = 0.66, P < 0.001 and ‘I trust the staff members at this facility’ with r(119) = 0.60, P < 0.001. The highest correlation with overall impressions of the facility was also reported for the items ‘I feel like my family member is well cared for’ with r(121) = 0.70, P < 0.001 and ‘I trust the staff members at this facility’ with r(118) = 0.62, P < 0.001. Table 4 presents the mean score for each item within the F-IMPORTANCE scale (within the range of 1–5). The highest mean scores for individual data items were recorded for ‘Feeling like my family member is well cared for’ (mean (M) = 3.9), ‘Trusting the staff members at this facility’ (M = 3.9) and ‘Being informed about changes in my family member’s care plan’ (M = 3.8).
Staff have created opportunities for me to meaningfully participate in my family member's day. I have been asked about my family member's personal history. I have been asked about family member's preferences and values. Staff have helped me to understand how dementia affects my family member. I am able to dine with my family member if I want to. I have been asked to bring in pictures, letters and other personal items to teach staff about my family member. I feel like I am involved in the decision making about my family member's care when he or she cannot make decisions for themselves. Staff have taught me how to communicate with my family member as the condition has progressed. The facility has a support group. I was introduced to different staff members at the facility when my family member was admitted. Staff explained to me the rules and procedures at the facility upon admission. Administrators have asked my opinions about the quality of care provided at this facility. The facility holds family information meetings. I feel like my family member is well cared for. I trust the staff members at this facility. I am informed about changes in my family member's care plan. Staff have helped me to understand the difficult behaviours that my family member sometimes exhibits. I feel comfortable phoning staff members and talking to them about how my family member is doing.
Overall satisfaction
Overall impressions
0.43*
0.50*
0.40*
0.48*
0.45*
0.48*
0.38*
0.40*
0.29*
0.29*
0.29*
0.39*
0.47*
0.52*
0.36*
0.49*
0.37* 0.25*
0.45* 0.36*
0.45*
0.48*
0.43*
0.48*
0.23**
0.26*
0.66*
0.70*
0.60* 0.49*
0.62* 0.48*
0.43*
0.44*
0.40*
0.38*
*P < 0.01 level. **P < 0.05 level. F-INVOLVEMENT, family-perceived involvement.
aged care facilities. Most of the research undertaken to date has focused on family satisfaction with care, or family involvement defined as frequency of visits and type of activities undertaken [7]. The aim of this study was to explore the relationship between family-perceived involvement in longterm residential care, and satisfaction and impressions of the care provided in this setting. The study was also designed to collect information on those elements of involvement that were considered most important to the family member. Undertaking the study across four residential aged care sites from within a single provider group helped to standardise potential variation in service delivery and quality across facilities.
Discussion Family involvement is considered an important aspect of providing individualised care to people living in residential 168
Family-perceived involvement was significantly and positively correlated with both overall satisfaction with care Australasian Journal on Ageing, Vol 34 No 3 September 2015, 166–170 © 2014 ACOTA
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Table 4: Means scores reported for individual items within the F-IMPORTANCE Measure Staff creating opportunities for me to meaningfully participate in my family member's day Being asked about my family member's personal history Being asked about family member's preferences and values Staff helping me to understand how dementia affects my family member Being able to dine with family member if I want to Being asked to bring in pictures, letters and other personal items to teach staff about my family member Being involved in decision making about my family member's care when he or she cannot make decisions for themselves Staff teaching me how to communicate with my family member as the condition has progressed Having a support group at the facility Being introduced to different staff members at the facility when my family member was admitted Staff explaining rules and procedures at the facility to me upon admission Administrators asking my opinions about the quality of care provided at this facility The facility holding family information meetings Feeling like my family member is well cared for Trusting the staff members at this facility Being informed about changes in family member's care plan Staff helping me to understand difficult behaviours that my family member sometimes exhibit Feeling comfortable phoning staff members and talking to them about how my family member is doing
Mean (out of a maximum of 5) 2.82 3.09 3.38 3.35 2.85 2.88 3.76 3.26 2.89 3.40 3.59 3.45 3.04 3.92 3.91 3.83 3.53 3.77
F-IMPORTANCE, importance family assigns to family-perceived involvement.
and services and impressions of the aged care facility. Family-perceived involvement was not significantly associated with any other variables collected such as sex, relationship, length of resident stay and participant age. All individual items within the F-INVOLVEMENT scale displayed a positive and significant relationship with overall satisfaction and facility impressions. However, the strongest relationships focused on the family feeling that the resident family member was well cared for, that they had trust in the staff and were involved in the decisions regarding the resident family member’s care. Analysis of the F-IMPORTANCE items found that feeling the resident family member was well cared for, having trust in the facility staff and being informed about changes in the family member’s care plan were considered the most important elements of involvement by the family. Those aspects of involvement considered to be less important were staff creating opportunities for meaningful participation in their family member’s day and being able to dine with the resident family member when desired. Family involvement can have different meanings in different contexts and change over time. Particularly, for a prior carAustralasian Journal on Ageing, Vol 34 No 3 September 2015, 166–170 © 2014 ACOTA
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egiver, the physical role of caring may change to that of advocate, emotional supporter and protector of resident dignity and identity. The present study was designed to address non-instrumental aspects of family involvement, and the findings align with similar literature that defines how families prefer to be involved with the care of their resident family member. Studies have found that family members who participated more in assistance with activities of daily living were less satisfied with the residential care and that families did not wish to increase their level of involvement in resident hands-on care [8,11–14]. Rather, greater value is placed on being able to provide non-instrumental support such as advocacy, advice on resident preferences and care oversight, while trusting that day-to-day task management is undertaken by appropriately qualified residential care staff. The provision of information and support from the residential staff and the opportunity to participate in decision-making have also been positively associated with a perception of higher quality in similar studies [9].
Study limitations The F-INVOLVEMENT and F-IMPORTANCE tools were designed for and tested with family members of those residents with dementia. The questionnaire distribution method did not allow for resident characteristics to be taken into account and therefore, a number of next of kin participated in the survey whose family member did not have dementia. Participants were asked to not respond to those questions that were specific to dementia (two within each scale), which therefore affected the number of scales completed in their entirety and able to be included in subsequent analysis. In addition, the residential facilities included in this study were metropolitan and may not represent the views of family members in a remote or rural setting.
Conclusions The findings of this study add to the limited body of research into family involvement in long-term residential care from the perspective of the family member. To date, literature in this area has been largely qualitative and with small sample groups. The information in this study has been derived through the application of a multi-item, reliable measure that is able to produce quantitative data. This in turn can provide the organisation with specific and actionable information with which to review their practices where appropriate and target efforts towards those aspects of involvement that are most important to the family members in this setting.
Acknowledgements The author wishes to thank sincerely Eldercare for their support in undertaking this study. The author would also like to acknowledge the guidance and direction provided by Dr Sandra Davis of Flinders University of South Australia.
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Key points • Family involvement is an important element of providing individualised care to people living in residential aged care facilities but remains effectively unmeasured. • In the present study, family-perceived involvement was significantly and positively correlated with satisfaction and impressions of the facility. • Feeling the resident family member was well cared for, having trust in the facility staff and being informed about changes in the resident family member’s care plan were considered the most important elements of involvement by the family. • Feedback from the family regarding particular aspects of involvement may also improve the experience of long-term care for both family and resident and assist with identification of specific issues towards which organisations may target their quality improvement efforts.
3 4 5 6 7 8 9 10 11 12 13
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