Working with Family Members in SDAS: Findings from a Feasibility Study

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1 Working with Family Members in SDAS: Findings from a Feasibility Study Lorna Templeton, Sarah Zohhadi and Richard Velleman August

2 Contents Page Acknowledgements and Steering Group 1 Section One Background Alcohol, Drugs and the Family The stress-strain-coping-support model A brief intervention Aims and Objectives 3 Section Two Methodology Overview Adaptation of the Manual SDAS-wide survey of opinions Recruitment and training of SDAS workers Data collection Analysis 6 Section Three - Results Description of the samples Data collection Change for family members coping, symptoms and impact Other findings 11 Section Four Summary, Discussion and Conclusion Summary Discussion Conclusion 26 References 28 Appendix One Details of quantitative measures used in the study 29 Appendix Two - Model to support the qualitative analysis 30 Appendix Three Qualitative Findings: more detail 32 Appendix Four - AAFPQ Tables 36 1

3 Acknowledgements We are grateful to AWP for funding this feasibility study. We would like to thank all other members of the Steering Group for their time and enthusiasm throughout the duration of this project. They are Jane Baker, John Golding, Anthony Hewitt, David Miles and Barbara Stevenson. Further thanks are extended to David and Barbara for their additional involvement in the study, by attending the training sessions and assisting with qualitative data analysis. We would also like to thank the AWP Alcohol and Drug Alliance Group for the support that they gave to this study. This study has been an excellent collaboration between Researchers, Practitioners and Carers. This study would not have possible without the support and commitment of all SDAS teams; in particular the managers for their support and the SDAS staff who participated in the study itself. The managers are Lynne Booth, Helen Cottee, Dave Douglas, Ian Dickinson, Dave Keech, Gerry Monaghan and Sharon Webb. The SDAS workers are Joan Anderson, Gemma Badman, Laura Bocci, Geoff Bull, Sally Gleave, Josie Harrington, Jan Hernen, Chris Johnstone, Steve Leckie, Jane Lloyd, Mike Porter, Pauline Sewards, Marguerite Spendlove, Jenny Teagle and Sharon Webb. We would like to extend particular thanks to the family members who consented to participate in the study. The time that they gave and the data that they provided have been invaluable. Finally, we would like to acknowledge and thank Alex Copello and Jim Orford, whose collaboration in this research programme has helped to make this study possible. Steering Group Jane Baker John Golding Anthony Hewitt David Miles Barbara Stevenson Lorna Templeton Richard Velleman Sarah Zohhadi Manager of the Bristol Specialist Alcohol Service General Manager of the Specialist Drug & Alcohol Services for Wiltshire General Manager of the Specialist Drug & Alcohol Services for AWP Carer Representative, Member of ADA Carer Representative Senior Researcher and Manager of the Alcohol, Drugs & the Family Research Programme, Mental Health Research and Development Unit Professor Mental Health Research and Director of the Mental Health Research and Development Unit Researcher, Mental Health Research and Development Unit 1

4 1.1 Alcohol, Drugs and the Family Section One - Background There are believed to be about 8 million people in the UK who are affected by the problem alcohol or drug use of a close family member, and the experiences and needs of these relatives have been well documented (Orford et al., 2004; Velleman & Templeton, 2003). However, the level of service provision for these relatives does not match the need for such services (Velleman & Templeton, 2003; Copello & Orford, 2002). This is an issue that is being addressed in recent national policy developments, such as the Government s updated Drugs Strategy and the proposed National Service Framework for Children, and also in local policy, such as AWP s 'Carers: A Framework for Action', and the SDAS 'Carers and Relatives Involvement Action Plan'. This area of work also fits in with at least two of AWPs R&D Priorities, particularly with the Addictions Priorities and Needs Funding Programme. A long-running research programme (Velleman & Templeton, 2003) has developed and evaluated a brief intervention, based on the stress-strain-coping-support model (Velleman & Templeton, 2003; Orford, 1998) to train and support professionals to work with the family members of those with substance misuse problems. This intervention has been successfully tested in a feasibility study (Copello et al., 2000a, b) and a randomised controlled trial (Copello et al., 2004) that were both conducted in the primary care setting. 1.2 The stress-strain-coping-support model The stress-strain-coping-support model, on which this work is based (Orford, 1998), suggests that: Living with a substance misuser is stressful. This stress leads to strain. Family members who live with a substance misuser will show signs of strain ; particularly physical and psychological symptoms. The amount of strain is influenced by two key factors: coping and social support. Family members will try all manner of things to try and cope with, or respond to, their situation. Some forms of coping or responding are more likely to reduce strain, whereas others are more likely to increase it. Similarly, family members will also have differing levels and quality of social support; and more social support, and support that is more helpful to a family member, will again lead to reduced strain at any given level of stress. This then means that there are two ways of reducing strain (i.e. physical or psychological symptoms). One is to reduce the stress (for example, if the substance misuser reduces or stops the misuser). The other is to alter one or both of the mediating factors of coping and support. The model suggests that, because the level of strain (symptom levels) is a result of either the amount of stress, or the amount and style of coping and support, then expected change in symptoms would occur if there were changes in these other areas first. Hence over a three-month period, and looking at a brief intervention that concentrates on mediating factors and not on helping the substance misuser to change his or her behaviour, the model would suggest that there would be earlier and larger changes showing in measures of coping and support, with changes in symptom levels occurring (if they do so) only once these changes in these mediating factors have taken effect. 2

5 1.3 A brief intervention The brief intervention that has been developed suggests five steps to be considered when working with a family member. These five steps correspond to the main elements of the stress-strain-coping-support model. Step One Step Two Step Three Step Four Step Five Giving the family member the opportunity to talk about the problem. Providing relevant information. Exploring how the family member responds / copes. Exploring and enhancing social support. Referring on for further specialist help. Results from the two studies that have been conducted in the primary care setting (Copello et al., 2004; Copello et al., 2000a, b) showed that the brief intervention can affect coping behaviour and significantly reduce negative symptomatology, as well as improving the opinions of the professionals undertaking the work. 1.4 Aims and Objectives The generalisation and applicability of such an intervention in settings other than primary care requires investigation. Thus, the primary aim of this feasibility study was: To develop and pilot a brief intervention for the relatives of problem alcohol and drug users, for use by Specialist Drug and Alcohol Services (SDAS) in AWP. And this would be met by achieving five objectives: Objective One - Objective Two - Objective Three - Objective Four - Objective Five - Adapt an existing brief intervention for use by SDAS across AWP. Recruit and train SDAS staff to deliver the intervention to family members. Ask SDAS staff to recruit and then work with family members. Collect pilot data on the impact of the intervention for family members and SDAS staff. Explore the feasibility of integrating such work into routine clinical practice. 3

6 2.1 Overview Section Two - Methodology The feasibility study employed mixed methodology with a before and after design, and had four phases that corresponded to the study objectives: 1. Adapt an existing brief intervention for use by SDAS, and conduct an SDAS-wide quantitative survey of staff attitudes towards working with the family members of drug and alcohol misusers. 2. Recruit and train 16 SDAS workers to deliver a brief intervention to family members within the specialist setting. To ask SDAS workers to recruit up to two family members each, collect baseline quantitative data from them and deliver the brief intervention (Target N=32). 3. Collect pilot data on the impact of the intervention for family members and SDAS staff, via interviews and repeat administration of quantitative measures. 4. Collect end of project data from SDAS workers via focus groups to discuss the potential integration for the work into routine clinical practice, and repeat administration of staff attitudes measure from all SDAS staff that had completed the measure at baseline. 2.2 Adaptation of the Manual The primary care feasibility study (Copello et al., 2000a) involved the testing of a manual for use by the professionals in their delivery of the brief intervention to family members (Copello et al., 1997). The primary care randomised controlled trial (Copello et al., 2004) involved use of an updated version of this manual (Copello et al. 2000), alongside the development of a self-help manual for family members (Templeton et al., 2000). The manual used in the current SDAS feasibility study (Templeton et al., 2003) was based on the two manuals written for testing in the primary care setting. The manual was just over 100 pages, with four main sections; an Introduction, Overview to the Intervention, The Five Steps and Supplementary Information. The final section was by far the longest, nearly half of the overall length of the manual, containing case studies, further information on stresses & strains for family members, further information on alcohol & drugs, further reading and contact details for other services nationally & locally. In addition to the manual, each SDAS worker received a set of summary cards that summarised the identification of family members, the intervention and each step (one page for each). Some of the SDAS workers who participated in the main study agreed to read through a draft of the manual before final printing. No further revisions were made. 2.3 SDAS-wide survey of opinions Approval for this aspect of the study, to be conducted as an audit of SDAS opinion and training in this specific area, was given by the AWP Clinical Governance Committee. The Attitudes to Addiction Related Family Problems Questionnaire (AAFPQ - see below and Appendix One for more details) was sent to all specialist drug and alcohol staff in the eight SDAS teams (with a unique identification number to aid anonymisation). A follow-up questionnaire, identical to that used at baseline (apart from the omission of some basic demographic questions) and labelled again with the appropriate ID number was sent out approximately 10 months later to all those who completed and returned baseline questionnaires. 4

7 2.4 Recruitment and training of SDAS workers The lead researcher (LT) attended team meetings for each of the eight SDAS teams to discuss the project. Information was also provided at the SDAS annual away day / conference that was held towards the end of Those interested in taking part were asked to make contact with the research team. Once workers had been recruited (ensuring that they had completed an AAFPQ; they were asked to do so if one had not been received), training sessions were organised. Two training sessions were held, providing the recruited professionals with information on recruiting family members, delivering the intervention to them and collecting data for the research team. Once trained, workers were asked to recruit up to two family members each and attempt to deliver the intervention to them over a three-four month period. Inclusion of a family member was based on the severity of the distress experienced by the family member, not on the severity of the substance misuse by the relative. Further inclusion criteria stated that the family member needed to have been living with the substance misuser at some point in the last six months, that the relative needed to have consumed alcohol or drugs problematically at some time during the last six months, and that the family member should be 16 years old or above and should have a reasonable command of the English language. Exclusion criteria were if the family member themselves had a substance misuse problem, or a serious mental health problem, as it would be difficult to separate the problems caused by their own use of substances. 2.5 Data collection A mixed methodology before and after design was used to collect data from both family members and SDAS workers: Family Members A battery of quantitative measures collected data from family members at baseline (at the time of recruitment into the study) and twelve weeks later. There were two elements to this data collection: Demographic information, including gender, relationship to the person with the alcohol or drug problem and length of time living with the problem. The use of three validated measures (Appendix One) to measure the impact of the situation on the family member, the family member s symptoms and their coping strategies. In addition, face-to face interviews were carried out with family members at three-month follow-up to obtain further, more detailed qualitative data about the family member s situation, experiences of receiving the intervention and appropriateness of specialist drug and alcohol services as an environment in which to receive help. SDAS Workers Data were collected from SDAS workers at baseline (prior to receiving training) and approximately ten months later. There were three elements to this data collection: The use of a measure of opinions towards working with family members (Appendix One). This was administered to all SDAS workers at baseline (prior to recruitment into the study) and approximately ten months later. The SDAS workers who participated in the main study were asked to complete a recruitment form to describe how they had recruited a family member and what their presenting problem(s) had been, and to complete a post-session form each time they had a session with a family member (detailing 5

8 the content of each session and any feedback about the process). Workers were also asked to ensure baseline data for each family member were collected. At the end of the study, focus groups were held with all the SDAS workers who participated in the main study. There were four broad areas for discussion in the focus groups experience of identification and recruitment of family members, using the 5-step model as part of practice, impact / outcomes of the intervention for family members, using relatives and clinicians, and the feasibility of the work in the future. 2.6 Analysis Quantitative data collected at baseline and follow-up were entered into SPSS (Statistical Package for the Social Sciences) and analysed using paired samples T-tests. Coping and symptoms were the key outcome variables. Qualitative data obtained via the face-to-face interviews with family members were written up into interview reports that formed the core text for analysis (this procedure is commensurate with other research projects undertaken by the first author and colleagues [see Velleman and Templeton, 2003], including the two studies that were conducted in primary care). There were 15 reports in total. In addition there were notes from the end of project focus groups with the SDAS staff, supported by the qualitative data that they had provided through recruitment and post-session forms. The primary qualitative analysis was undertaken using 12 of the interview reports with family members (selected as the first twelve interviews that had been conducted and written up). The reports were divided between two pairs of researchers (such that each pair focused on 6 interviews, using the other 6 to gain further insight into the main findings) and analysed using thematic analysis (based on the principles of Grounded Theory) to identify any pervasive themes across family members experiences. The group came together to discuss findings and the emerging model, before this aspect of the data written up, discussed with the Steering Group and then revised and completed as part of this final report. Thematic analysis of the recruitment forms, post-session forms and focus groups allowed for the integration of themes throughout the report. The final follow-up qualitative data from family members was used to allow checking against the model that had emerged from the primary qualitative analysis. 6

9 Section Three - Results The pathway of SDAS workers and family members through the study can be seen in Figure One. Figure One: Pathway of SDAS staff and Family Members through the study Number of SDAS staff who were eligible to be sent the baseline attitudes measure, N=135 Number of SDAS staff who returned the baseline attitudes measure, N=76 Number of SDAS staff who were recruited into the feasibility study and who received training, N=15 Number of family members who were recruited into the study, N=20 Follow-up of family members at 12 weeks: 15 family members completed quantitative measures and provided qualitative data Lost to follow-up = 5 Number of SDAS staff who completed the attitudes measure at follow-up, N= 35 (this includes all 15 of the SDAS staff who took part in the main study. 7

10 3.1 Description of the samples SDAS workers One hundred and thirty-five SDAS workers were identified to be included in the attitudes survey. Data were collected from 76 SDAS workers at baseline (56%). The key characteristics of the sample at baseline can be summarised as follows: Almost two-thirds of the sample was female (N=51, 66%). The mean age of the overall sample was 41 (range 25 to 68). The mean length of time working in the Drug and Alcohol field was 8 years (range 1 month 40 years). The mean length of time working in their current post was 4 years (range 1 month to 25 years). Workers current posts covered a wide range of roles within their teams, including Clinical team leaders, managers, administrative staff; Drug and Alcohol Workers; Medical staff - Nurses (range of grades), Doctors, Consultants; Social workers, Arrest Referral workers, Young Peoples workers, and Clinical Psychologists, Group therapists and Art therapists. Recruited SDAS Workers Fifteen SDAS workers, from seven of the eight teams, were recruited to the main study (11% of 135; 20% of 76). The key characteristics of the sample can be summarised as follows: Almost three-quarters of the recruited sample were female (N=11/15). The mean age of the recruited sample was 40 (range 25-58). Roles held by the professionals within their teams included: Social Worker, Clinical Team Leader, Senior Charge Nurse, CPN, Clinical Psychologist, Drug & Alcohol Worker, Detox Nurse, Doctor and Specialist Nurse. The mean length of time working in the Drug and Alcohol field was 6 years (range 1 month 14 years). The mean length of time working in their current post was 2.5 years (range 1 month to 11 years). Family Members Twenty family members were recruited into the study. The key characteristics of the sample at baseline can be summarised as follows: Over three quarters (N=16) were female. The majority (N=18) of the substance misusing relatives were male. The two main ways by which the family member was related to the problem alcohol/drug user was parent (N=14) and partner (N=5). In addition there was one nephew. Family members reported having lived with the alcohol/drug misuse problem for some considerable time, an average of ten years (range 2 to 20 years). Nine family members reported their relative as having a drug problem (of these the majority felt the main drug their relative was using was heroin), nine reported their relative as having a drinking problem, whilst two reported their relative as having a drinking and drug problem. Over half of the family members (N=13) felt that their relative definitely had an active problem, with a four feeling that their relative probably had an active problem. One family member was unsure with the other two family members saying that their relative definitely did not have an active problem. SDAS workers were asked to describe the presenting problem for the family member. Often this was expressed in terms of the alcohol or drug misuse of the relative, but several SDAS workers indicated that the family members had wanted to participate in the research project for themselves 8

11 feelings of helplessness, not understanding, feelings of guilt, some anxiety about the future and being alone in dealing with issues, wants to know how to help and how to cope, going on too long, need something for myself, looking to make change, feeling it dominates her life, no help for so long, no-one would listen, no-one understood, frustration, anger, powerlessness about her son s drinking and how it is affecting the whole family. 3.2 Data collection Thirteen of the 15 SDAS professionals (87%) delivered the intervention to at least one family member; 20 family members were recruited in total. Recruitment forms were available for 19 of these family members. Data were collected from all 20 family members at baseline (100%), and from 15 (75%) at twelve week follow-up. o The research team attempted to contact the remaining family members by telephone or post. In one case the research team was advised by the family member s SDAS worker that she would probably not respond due to the ill health of a relative, therefore contact was not pursued. One family member dropped out of the intervention and when contacted by post replied that he no longer wanted to take part in the study. The remaining three family members were contacted by post inviting them to take part in an interview (and later sent questionnaires and free-post envelopes) but did not respond (no telephone number was available for them). On average, SDAS workers had 3.7 sessions with family members, with a session lasting for an average of 55 minutes. The first session took the longest, lasting on average 72 minutes. The second and third sessions were shorter (lasting an average of 43 and 48 minutes respectively), with more time then needed for the fourth and fifth sessions (lasting an average 53 and 57 minutes respectively). Post-sessions forms are available for most of the sessions. Fourteen of the fifteen SDAS staff participated in an end of project focus group. The final SDAS worker was interviewed by telephone. All completed follow-up AAFPQs. 3.3 Change for family members coping, symptoms and impact Table One displays the mean scores, at baseline and three months, for the total scores and sub-scales, for the three main outcome measures. Figure Two displays the mean scores, at baseline and three months, for the total scores for the three main outcome measures. These data show that the key quantitative findings were a significant reduction in overall coping score, and a significant reduction in the level of engaged coping. Almost all changes between baseline and follow-up were in the right of hoped-for direction. Given the very small numbers involved it is not surprising that few of the results were statistically significant; in fact, the fact that there were some significant differences demonstrates the strength of the effects. 9

12 Table One: Change in Impact, Symptoms and Coping Scale Baseline Three months Change Impact Total impact Not significant, but change in right direction Worrying behaviour Not significant, but change in right direction Active disturbance Not significant, but change in right direction Symptoms Total symptoms Not significant, but change in right direction Physical symptoms Not significant, slight increase so change in wrong direction Psychological symptoms Not significant, but change in right direction Coping Total coping * Significant change in right direction t=2.235, p<0.05 Engaged coping * Significant change in right direction t=2.233, p<0.05 Tolerant coping Not significant, but change in right direction Withdrawal coping Not significant, but change in right direction *indicates a significant result. Analyses are based on fifteen pairs where there was baseline and followup data. Figure Two: Comparison of mean scores at baseline and follow-up for the three scales used Mean 20 Total Impact Score 1 Total Sympt Score 1 Total Coping Score 1 Total Impact Score 2 Total Sympt Score 2 Total Coping Score 2 10

13 3.4 Other Findings The qualitative data collected from family members and SDAS staff, alongside further quantitative data collected from family members, allows for further exploration of the key quantitative findings that have been described above, as they relate to the objectives of the project, particularly Objectives Four and Five. This section of the report is based largely on follow-up interview reports with family members 1, incorporating data from recruitment forms, post-session forms, focus group and other quantitative data. Figure Three (Appendix Two) presents the model to emerge from the analysis. Living with a substance misuser the situation before recruitment The quantitative data shows that family members have been living with the situation for an average of 10 years. Many talk of feeling isolated and almost all have at least one negative story to tell about trying to get help for themselves or their relative in the past. Family members are displaying many of the expected signs of stress and strain (for example, anxiety, depression, problems sleeping and not working) and are employing a variety of typical coping strategies to try and respond to their situation, ranging from denial and aggression to helplessness and total involvement. Data from SDAS workers further supported the view that the family member appeared to be the one holding it all together in their family, putting everyone else s needs before their own. However, some family members provide evidence that despite this they are coping anyway. I try to cope, keep it locked away You are coping with it, all the time What you do now is look back and wonder how the hell you got through it all.it gives you a chance to express yourself and it brings back to you what you have been through, you don t even realise, how did I cope and get through that? There was little mention of other major changes in the lives of these family members; where change had occurred it tended to be related to the using relative, for example a son moving out, a decision by a family member to move away, and the using relatives seeking treatment. In the context of many family members having been living with the situation for some years, many family members said that the intervention had come too late for them; it would have been better years ago, when they were in crisis or first found out about the problem. One mother of a drug user said, four years ago I would have loved someone just to sit and talk to. A male partner of an alcohol user said that the intervention had been less helpful in some ways to him because he had done a lot of reading and searching on the Internet to try and get help. A period of stability participation in the research study At baseline, many family members (N=17) felt that their relative definitely or probably had an active problem. A quarter of family members (N=5) felt that the situation had changed for the better over the previous three months, with just under two thirds (N=12) saying that the situation was the same, or they were unsure if there had been any change. At follow-up, fewer family members reported that their 1 Further exploration of the qualitative data from family members was also undertaken to explore whether there were any differences according to the number of sessions received, the relationship of family member to relative, main substance used and how long the family member had been living with the problem. Nothing of particular significance was found that altered or expanded the qualitative model presented; where differences were found, they are highlighted. 11

14 relative definitely or probably had an active problem (N=8). Just over half of the family members (N=7) felt that the situation was much or somewhat better over the last three months, with a further fifth (N=3) saying things were the same or they were unsure, and a third (N=5) saying that things were a bit worse. Family members were recruited into the study largely because the using relative had been, or was currently, engaged with SDAS. It is likely that some family members were recruited into the study during a phase in their situation that could be more stable than might be expected. For several family members the substance misuse of their relative (all drug using sons) had improved with several of the sons stable and on methadone, and having been so for a few months. Identification and Recruitment of Family Members by SDAS staff SDAS workers employed a variety of strategies to try and identify and recruit family members, both individually and as a team. This included talking to clients, writing letters to identified family members, discussing at team meetings and talking to colleagues. One person said that they had approached the one SDAS team who did not participate in the main study, but were told that there were no family members. Data from recruitment forms indicated that most SDAS workers did not previously know the family member(s) that they worked with; referrals and suggestions came from colleagues who were often key-working the client. For the majority of SDAS workers, the process of identification and recruitment was more difficult and time-consuming than anticipated it was surprisingly difficult and found it difficult to find the time to think through caseloads. Workload, other individual and team pressures, the research exclusion criteria and most family members not in a current state of crisis were factors that contributed to the difficulty in recruitment. However workers from two teams reported no difficulties in recruitment and two workers from one team said it was easy, they didn t understand why others had problems, and they could have recruited more than twice as many family members it s something we could have done in an ongoing way. What Family Members told us after Recruitment An opportunity to talk Almost without exception, family members found the intervention beneficial - I feel privileged to have had this help, I can t thank you enough ; I feel different but I don t know how ; I found every single one of them [sessions] helpful I learned such a lot from her. Benefits seemed to be enabled via the opportunity to engage in two processes; the opportunity to talk, and the opportunity to change. The opportunity to talk was influenced by the characteristics of the worker, the nature of the sessions and the characteristics of the family member (Figure Three, Appendix Two). Change was seen primarily through the adoption of alternative ways of coping (Figure Three, Appendix Two) but also through reduced stress and strain and improved support. Worker characteristics Counselling skills There were very positive comments from all family members about the SDAS workers. The table in Appendix Three provides evidence to support this from six family members. All family members spoke about the value of having someone to talk to, and the style and characteristics of that contact that were important to them. Workers were able to make family members feel at ease, to reassure them, to guide them without being directive or judgmental, and to show them respect and warmth. One father talked 12

15 about previous help he had received where he was told not to give money to his son, something that the father did to prevent him turning to crime, getting into trouble and potentially being sent back to prison. The fact that such a directive approach was not taken by his SDAS worker was beneficial to this family member. Family members were thus often encouraged to speak about their situation in ways that they had not been able to do before. SDAS workers said that they were sometimes conscious that the sessions often represented the first chance for family members to talk; they were thus aware of the importance of the first session of the intervention, exemplified further by the fact that this session took, on average, longer than any of the others. Expert status A beneficial and reassuring aspect of the sessions cited by a number of family members was related to the expert status and knowledge held by the workers. This operated on a number of levels, for example, the fact that the workers had knowledge of addiction, treatment and prognosis satisfied the need that many family members expressed for information. The fact that the workers had seen other people come through similar situations helped family members to see that there is light at the end of the tunnel. The support of the worker increased family members confidence, reassured by the fact that an expert agreed with the strategies they were using they weren t doing it all wrong; it wasn t their fault. SDAS workers also noted a strong emphasis on information giving in a number of sessions, also noting that family members seemed to be confused, in the dark, or having been given conflicting advice. The need for knowledge and information was largely linked to the relative s misuse and treatment; in this setting, therefore, there appears to be a triangular relationship between the family member, the relative and the SDAS worker. Session characteristics Family members were very positive about the help that they had received, rating the sessions with a median score of 8 (on a scale 0-10) and rating the intervention overall with a median score of 9 (on a scale 0-10) [for neither question was a rating of lower than 5 given]. An outside view There is evidence from family members that the SDAS workers were able to hold an objective or outside view on the situation, and that this was a supportive and validating function in reinforcing to them the message that, my needs are important too. In a number of cases the reassurances provided by the worker that the strategies they were using were good ones increased their confidence in themselves and their ability to cope with the situation. It also encouraged some to change how they responded, as if they now could act with the backing of someone in the know, or even just someone outside the family - It s just nice to talk to someone who s not involved family and friends are too close I think. Most importantly perhaps, the fact that these outsiders considered the opinions and experiences of the family members as important and worthy of discussion provided further justification for looking after themselves and reduced the sense of guilt a number of them described having when taking time for themselves. Time and space All family members valued the time and space that the sessions allowed them for talking about their situation and exploring options. Often the chance just to talk to get it off your chest or telling me her story in itself had a cathartic benefit. A function of being given the time and space, given the context that the family members in this sample had been living with the problems for an average of ten years, seems to have been the chance to digest what had happened to these family members. Before this, there is a sense that they had merely lived through the situation and dealt with everything thrown at them without having the time to process and think about it all - She drew things out from me perhaps 13

16 things I d thought but never spoken; I ve never really had anyone to talk to about how I was feeling through all this, and, It was about the first time I felt somebody had listened to me about the problem very relieved that someone was prepared to listen to me someone was interested in how I was feeling. SDAS workers saw encouragement, reassurance, support and reinforcement as key elements to the delivery of the intervention. However, workers were also aware that the sessions stirred up emotions for the family members, often because they hadn t spoken about their situation to anyone and were finding the opportunity to have time and space cathartic in itself. There was a need to be alert to this in the sessions. Some family members further commented that they felt guilty in talking to the SDAS worker, concerned that they were betraying or being disloyal to their relative. Problem-solving The problem-solving focus of the sessions was found helpful by family members, an element to this intervention that appeared to differ from previous help received, and which was an added bonus to the provision of emotional support. One family member talked negatively about her past experience of attending a support group, saying it s not for me too many people and their problems lots of stories not really going anywhere. For her the sessions with the SDAS worker were not too emotional, more about factual information and problem solving. Another family member was attending counselling sessions with a local non-statutory agency at the same time as receiving this brief intervention. She found that the two complemented each other well, as she could talk about things in a different way and benefit from the different approaches. In other cases the intervention helped the family members to work out solutions for themselves - she let me find my own way she helped me to arrive at ways of dealing with things. The setting and a way-in There were two main issues here. On the one hand, the expert setting in which the family members received the help seemed to serve a supportive function for the family members, knowing that they were being seen by people who understood the problem and, importantly, had links with their relative s care. There appears to be a triangular relationship between the family member, the relative and the SDAS worker. A number of family members felt that in the past they had been largely ignorant about about their relative s treatment. Being involved in the intervention meant greater involvement in and awareness of what was going on for their relative. In one case being involved with an SDAS worker meant that one family member was able to ensure that her son received adequate aftercare (as the SDAS worker became more aware of the user s future needs and was able to ensure something was in place). One mother suggested that taking part in the sessions had helped to build something between herself and her son. She could demonstrate her commitment to him and his treatment and reinforce a message that this was something they could do as a family. Another mother talked about the benefits of being able to attend a meeting at SDAS involving her son and his keyworker. As she is his main carer and would be looking after him when he came home, she would like more involvement and information about what to expect and how to best care for him. There remained, however, mixed feelings about specialist services being the right place for this kind of work, sometimes expressed as uncertainly simply because the family members didn t know enough about what help was available unless there is an alternative you don t know. A minority of family members found the setting of the intervention, or at least certain aspects of it, uncomfortable. This was either related to a discomfort with being around substance misusers, a sense that attending the service meant that they had the problem, or a concern about jeopardising their relative s care. Comments in Appendix Two relate to this aspect of this theme. 14

17 Family member characteristics Holding it all together A common characteristic of the family members that emerged from the interviews, and which was reinforced by the data from SDAS workers, was their role in their families. There is a sense that everyone, particularly the using relative, relies on them for everything, whilst they on the other hand have little time, support or attention paid to their needs. One way in which this came across was not just in what the family members said in the follow-up interviews, but how their relative behaved whilst the interviews were in progress, through interruptions, listening in or making demands that imposed limitations on the interview. For example; asking where the bread was, not answering the telephone or showing an article in the local newspaper (that was related to alcohol). The family members often seemed to demonstrate an acute sense of responsibility for others, particularly their using relative - [I m] all he has ; I ve only ever known how to be there for him, and As a mum, I m used to only thinking of others. One family member was unsure about the impact of her returning to work, as she would no longer be able to keep her eye on everything. This clearly had an impact on the way, and the extent to which, the intervention worked for these family members, and helps explain the impact that time and space had for them. One family member was only able to attend one session I m the one who has to keep the house going. With validation and reinforcement from the SDAS workers, the family members were often able to see their needs as worthy of attention, and their attempts to put themselves first as justified - I thought I was strong and could cope with most things, but this is something I couldn t cope with. Entangled lives A strong sense came through in all the interviews of a firm link between the family member s state of mind and happiness and the relative s current level of use/ and or progress in treatment. This can be called the chameleon effect and seemed to be particularly strong for mothers. One mother, whose son has recently moved out, talked about the relief that this has brought - It was a battlefield it felt as though we were walking on egg shells in our own home. At times then, it appeared changes in the relative s situation were often more significant than the sessions. One mother said that her son s health had improved and that this change, eclipsed all other changes. Often, however, further questioning revealed that quite significant changes had been made, irrespective of the relative s situation, but were given less weight. Conversely, if the relative s situation had deteriorated, changes made through attending the sessions were almost played down (again, with probing these changes emerged as perhaps more significant). SDAS workers talked about the challenges to their work that emerged from the presence of some of the family member characteristics. A number of workers reported that it was sometimes difficult to focus on specific stages of the intervention, linked to the distress of the family member, the presenting problem, reluctance to engage with the intervention, or their agenda to try and help or find out more about their relative. It was often hard to get family members to focus on themselves difficult to get him to discuss impact on him wanting to discuss partner all of the time or focus on other issues. An opportunity to change The nature of the contact as described above set the context for providing time and space for the family members to consider their situation, focus on themselves and for change to occur. The stress-straincoping-support model suggests that coping and/or support will change first, and that a linked reduction in stress and strain can follow. The qualitative data provides evidence of change in coping, which supports the key quantitative findings that the intervention led to a reduction in overall coping score, and 15

18 a reduction in engaged coping. Family members were able to use the sessions to discuss and make changes to their situation, or to reflect on changes that they had made. Workers also noted the importance of this part of the intervention for family members, with some using the word lynchpin or similar to describe its importance. Family members were asked at the follow-up interview to asses changes to their situation in the last three months, and to what extent change could be attributed to the intervention. Nearly two thirds (N=9) said that the situation was a little or much better; eight of these family members said that this was moderately or quite a lot to do with the intervention (the ninth family member said that the improvements had nothing to do with the intervention). Two family members said that their situation was worse than before, but that this had nothing to do with the intervention. The other four family members said that there been no change to their situation and that this was not as a result of the intervention. Over the five sessions I have seen FM move from I don t know what to talk about to a recognition of own needs for an outlet for stress and validity of feelings in relation to a stressful situation. The structure of the sessions helped us to focus on positive change whilst acknowledging feelings. Change in coping The main way in which change occurred for family members was by an increased understanding of their own needs, manifested by an increased focus on themselves, an increase in confidence and strength, and withdrawing from the situation It made me realise I ve got a life of my own, and It did me good, it was helping me that was my time I felt I was spoiling myself. Appendix Two gives some short vignettes as examples of how the intervention helped some of the family members to change how they coped with the situation. A change in coping was helped in some cases by the questions that they could ask and discussions that they could have with their SDAS worker, and the information that was provided. One mother talked about the expertise on hand that made it the right place to get help and spoke about how this made her feel, I feel quite privileged actually to have had that chance, it is good for relatives to have a chance, they suffer, it s worse for them, they can t escape by taking a hit like the addicts do. The post-session forms that were completed by the SDAS workers were full of examples of the type of information that they discussed or provided. This was not just linked to alcohol or drugs, but to other issues such mental health problems. One worker also provided information on the carer s allowance whilst another was asked about a legal issue. Where there was not a direct change in coping, the intervention was supportive in giving the family member time and space to talk, and this in turn helping to reinforce how the family member was currently responding to the situation. One male partner had already done a lot to find out about the situation and didn t really get anything new in terms of information and coping, though the reinforcement of what he was doing was important. For another male family member, a father, the opportunity to talk everything through was really helpful. Symptoms and strain There was less evidence of a reduction in strain and therefore in physical or psychological symptoms. Reduction in strain seemed to be linked to the opportunity to talk and the feeling of catharsis that this brought. One family member reported feeling less tired and depressed though sleeping problems and money worries remained. This man s partner (who was present at the follow-up interview) reported that the family member had been getting better over the last few months - getting on top of it..like he used to be. Another mother said that she felt stronger, more confident and a bit less anxious and depressed. 16

19 Support Family members seemed to have very little by way of current support from within or external to the family. The changes in coping described above had an impact on support, both through seeing the intervention as a form of support, and through family members putting themselves first more, going out, seeing friends etc. There were also indications of improvements in family environment, mainly through an improved relationship with the user and other family members. One father said that he gets on better with this son, whilst a mother said that she and her husband were able to trust their son to look after the family business whilst they went on holiday. This same family member was also able to devote more time to her daughter and grandchild. Another mother (with a son with an alcohol problem) said that she gets on better with her husband because she changed her coping so that they now cope in similar ways; they row less and can be more of a source for their young grandchildren. There were few changes in terms of accessing more professional support, other than the intervention itself, but in a few cases the family members were attending a local support group or receiving counseling from another local non-statutory service. Few family members said that they would like to have more sessions with the SDAS worker, but that they liked knowing that the worker/sessions might be there in the future [you wouldn t have to] start at the beginning every time and good not to have to go through it all again, it gets exhausting. Impact on the relative There was little evidence that the intervention had a direct impact on the consumption of alcohol or drugs by the relatives, although the impact scores all fell over the three month period (non-significantly). However, there were improvements in other areas, most notably the relationship between the family members and the relatives. One family member said that her standing up to her relative had him stopping him in his tracks to think more about the impact of his misuse. Another family member said that her relative had learned that he couldn t live so comfortably anymore, and that he had to be careful in case he got kicked out. In another case the intervention seemed to enable the user to think more about relapse. Thus, the main impact here was in terms of an increased awareness on the part of the users of the impact that their problem had on the family member. There was also little specific evidence that the intervention had any direct impact on the treatment that the relative was receiving. However, one SDAS worker said that, with regard to both of the family members that she worked with, the intervention led to SDAS re-considering the treatment that they were offering the relative. Impact on SDAS workers Analysis was undertaken on the full sample of AAFPQs (N=35 pairs). Total AAFPQ score and scores for Knowledge, Confidence, Support, Legitimacy, Impact and Self-belief increased over time but the only significant change was in total score (t= , p<0.5). Motivation decreased very slightly over time. Further analyses were conducted to explore differences between those who participated in the research and those who did not, and between those who were trained and then proceeded to deliver an intervention to at least one family member, those who were trained but did not work with a family member, and those who were not trained. Tables Two and Three in Appendix Four display the mean scores (and standard deviations) for these analyses. The only finding that approached significance was that of the change in confidence over time between those who were trained and then worked with a family member, and those who were trained but did not then proceed to work with a family member (F=3.12, p=0.087). Given the extremely small numbers involved (e.g. only two workers were trained and then did not work with a family member) this is not surprising. However, almost all of the differences in 17

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