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Journal of Palliative Medicine
 
J Palliat Med. 2009 June; 12(6): 517–519.
PMCID: PMC2904190

Assessing Families in Palliative Care: A Pilot Study of the Checklist of Family Relational Abilities

Abstract

Although families often play an integral role in palliative care, there are currently few measures to help clinicians gauge families' abilities to participate in this process. The Checklist of Family Relational Abilities was developed as an efficient, clinician-rated method of family assessment. Preliminary results suggest that Checklist ratings of overall family functioning and strength of family attachments were reliable across raters and associated with a well-validated self-report measure of family functioning. However, ratings of family communication and collaborative decision-making were less reliable. Based on these preliminary findings, we propose a revised version of the Checklist for further study in palliative care settings.

Introduction

Families typically play a significant role in the care of seriously ill patients.15 However, there are few empirical studies of family functioning in palliative care,6,7 and to our knowledge, no studies using brief, observer-rated tools that might be readily adopted by busy clinicians. Therefore, we used Wynne's epigenetic model of family relational functioning8 to create a new, clinician-rated tool.

Wynne's model offers a developmental understanding of families, beginning with the establishment of attachment bonds between individual members. These basic bonds of affection provide the foundation for the development of higher order family relational abilities such as open communication and collaborative decision-making. We developed the Checklist of Family Relational Abilities as a means of rating the strength of family attachment bonds, the nature of family communication, and the degree of collaborative decision-making. The Checklist includes an overall rating of family functioning and corresponding considerations for the level of family intervention. We report here preliminary results regarding interrater reliability and construct validity of the Checklist based on tape-recorded interviews with families of palliative care patients.

Method

Participants

Participants were recruited from families of patients receiving inpatient medical care with the Palliative Care Consultation Service (PCCS) of Strong Memorial Hospital in Rochester, New York, from April to July 2006. Prospective participants were referred by palliative care clinicians based on their assessment that the patient was quickly approaching death. Thirteen family members of 11 patients provided written informed consent based on procedures approved by the University of Rochester Research Review Board. The mean age of the 9 female and 4 male participants was 58 years (standard deviation [SD] = 12 years; range, 39–81 years). Racial composition of the sample was predominantly Caucasian, with 1 African American and 1 Native American participant. A range of participant–patient relationships was sampled, including 2 husbands, 4 wives, 2 sisters, 2 daughters, 2 sons, and 1 daughter-in-law.

Measures

The Checklist of Family Relational Abilities

The Checklist was designed to efficiently capture practitioner observations of family functioning based on Wynne's model. Attachment, communication, and problem-solving were rated on three-point scales according to descriptive anchor points (Appendix 1). The Checklist also included a four-point ranking of overall functioning that we developed previously from Wynne's model.9,10 Checklist ratings were made by three members of the PCCS, including a postdoctoral fellow in clinical psychology, a clinical psychologist, and a clinical social worker. Ratings were based on audiotaped interviews conducted by the postdoctoral fellow according to King and Quill's semistructured interview format.6

The Family Environment Scale

Family members completed the Family Relationships Index (FRI), a short form of the Family Environment Scale (FES),11 as a way to assess the construct validity of the Checklist. The FRI consists of 12 true–false items that look specifically at the subscales of cohesion, conflict/conflict resolution, and expressiveness. The FRI and FES have demonstrated reliability and validity in numerous previous studies conducted in palliative care and bereavement settings.12

Procedure

Participants were interviewed at home or in the hospital, according to their preference. The interview lasted approximately one hour and included a measure of depression, the Center for Epidemiological Studies-R (CESD-R),13 as part of a different study.

Data analysis and data monitoring

Two-way mixed model interclass correlations were calculated using SPSS software (version 13.0, SPSS, Inc., Chicago, IL) to determine the reliability of Checklist ratings made by the raters, as well as the relationships between FRI and Family Checklist scores.

Results

Sixteen families were approached to participate and 11 families (13 individuals) agreed. Three of those who declined simply did not want to participate in research. Two additional families declined due to the immediate acuity of the patients' conditions.

Interrater reliability

Interclass correlation coefficients calculated for attachment, communication, decision making, and overall functioning were 0.96, p < 0.001; 0.52, p = 0.08; 0.44, p = 0.14; and 0.91, p < 0.001, respectively. After making the ratings, the three raters discussed their differences and determined that three-point scales did not adequately capture the range of family functioning on communication and decision making. The raters agreed that these dimensions could be more accurately rated by using four-point scales. These new anchor descriptions have been added to a revised version of the Checklist included in Appendix 1.

Concurrent validity

A correlation matrix was created of component and total scores on both the FRI and the Checklist. Checklist scores were rank modes of the ratings of the three Checklist raters. Results indicated significant correlations of Checklist overall functioning with total FRI, r = 0.64, p < 0.05 and FRI conflict resolution, r = 0.69, p < 0.05. As well, Checklist attachment was significantly associated with total FRI, r = 0.61, p < 0.05 and trended toward significant association with FRI Expressiveness, r = 0.60, p = 0.05. Ratings of communication and decision making were removed from the analysis because of poor interrater agreement.

Discussion

Results of this small pilot study suggest the potential value of the newly developed Checklist of Family Relational Abilities as a brief, clinician-rated measure of family relationships in palliative care settings. Based on audiotaped clinical interviews, the Checklist was used to reliably rate overall family functioning and strength of family members' attachment bonds. However, Checklist ratings of family communication and decision making were less reliable, apparently because the original three-point scales did not capture adequately the full range of family functioning. Therefore, the Checklist was subsequently revised to include four-point ratings of communication and decision making.

Comparisons between the Checklist and a well-validated self-report measure of family functioning, the FRI, revealed important areas of association. The Checklist ratings of overall functioning were associated with total FRI score and FRI conflict resolution. As well, Checklist ratings of attachment were associated with the total FRI score. Thus, we found evidence of meaningful congruence between the two measures as a first step toward establishing the construct validity of the Checklist.

This initial pilot study was subject to several methodological challenges. Our small sample of 11 families may have experienced selection bias (e.g., if the most resilient or high-functioning families were those most likely to participate). However, we did observe a range of participant scores on both the FRI and the CESD-R, a depression measure, demonstrating that some participants experienced marked distress.

Another limitation was that the Checklist ratings were based on a common audiotaped interview rather than separate clinician ratings derived from routine family meetings conducted during palliative care. Therefore, the Checklist should be interpreted cautiously until replicated by future studies with larger samples that utilize the Checklist in routine palliative care.

Appendix 1. The Checklist of Family Relational Abilities

For each category below, mark the best description of the family you are working with. The term “family member” is used to include the patient as well as any other involved individual who has biological, legal or emotional ties to the patient.

Attachment Bonds

  • _____ Strong, positive bonds of affection are apparent between all or nearly all family members.
  • _____ Attachment bonds appear to be weak, ambivalent or “mixed” (i.e., both positive bonds and conflictual relationships in the family).
  • _____ Intense conflict or ‘wounded’ relationships are apparent between most or all family members.

Openness of Communication Regarding the Current Illness

  • _____ Communication between all or nearly all family members is open and includes expression of emotional reactions to the illness.
  • _____ Most family members discuss the illness openly but some individuals are excluded AND/OR family members avoid expression of emotional reactions.
  • _____ Some family members discuss the facts of the illness but few family members are involved in the discussions AND/OR emotional reactions are not shared.
  • _____ There is little if any discussion of the illness between family members.

Collaborative Decision Making Regarding the Current Illness

  • _____ Most or all family members participate in decision making and most seem satisfied with decisions that are made.
  • _____ Decisions are made by a minority of family members (e.g., the patient alone or one or two family members) but others accept or have grown to accept the decisions.
  • _____ Decisions are made by a minority of family members, causing others to feel left out and unsatisfied with the decisions on an ongoing basis.
  • _____ The family has great difficulty making decisions AND/OR there is serious, ongoing conflict about decisions that are made.

Overall Level of Family Relational Abilities

Circle the number below which best describes the overall capabilities and needs of the family:

  • 4- “Naturally Resilient”: Predominately strong, positive bonds of attachment; clear and open communication; effective, collaborative decision making (LITTLE IF ANY FAMILY INTERVENTION NEEDED)
  • 3- “Overwhelmed”: Predominately strong relational abilities but temporarily stymied by intensity and/or complexity of the patient's situation (BRIEF FAMILY FAMILY SUPPORT MAY HELP ENGAGE NATURAL ABILITIES)
  • 2- “Closed” or “Fixed”: Significant difficulties with communication and/or decision making (TARGETED INTERVENTION OR FAMILY CONSULTATION MAY HELP OPEN COMMUNICATION AND/OR FACILITATE DECISION MAKING)
  • 1- “Wounded”: Damaged bonds of attachment, intensely negative or conflictual communication and/or decision making (FAMILY THERAPY INDICATED TO ADDRESS LONGSTANDING GRIEVANCES BETWEEN FAMILY MEMBERS)

Acknowledgments

The authors wish to thank Nancy Rice M.S.W., Marcia Buckley, M.S., N.P., Laura Hogan, M.S., N.P., and the staff and faculty of the Strong Memorial Hospital Palliative Care Consultation Team for their assistance in this study.

This work was supported by HRSA Graduate Psychology Training Grant T06HP01830 (P.I.: D.A. King) and NIMH T32 grant MH019132 (P.I.: George S. Alexopoulos).

Author Disclosure Statement

No competing financial interests exist.

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Articles from Journal of Palliative Medicine are provided here courtesy of Mary Ann Liebert, Inc.