National survey of Patient Advice and Liaison Services (PALS) in England: children, young people and parents' access to and use of PALS

BACKGROUND: Patient Advice and Liaison Services (PALS) have been set up in the National Health Service (NHS) in England to enable patients and the public to access information and raise issues they are concerned about their health care. The aim of this study was to examine to what extent, and how, PALS have promoted children's, young people's and parents' access to and use of the service. METHODS: A postal questionnaire was sent to PALS in 553 NHS Trusts and Primary Care Trusts (PCTs). PALS in Ambulance Trusts, and Specialist Trusts that were known not to provide services for children and young people, were excluded. RESULTS: Questionnaires were returned by 320 respondents representing 369 trusts - a response rate of 67%. Seventy-seven responses were not valid, giving a final sample of 243 PALS. This included 122 PALS serving PCTs, 101 serving NHS Trusts, 15 serving a mix of both PCTs and NHS Trusts, and five serving children's hospitals. The responses suggest that, to date, most PALS have been developed as a generic service, with some making special efforts to target specific groups of patients and sections of the public. However, where such efforts have been made, they have tended to focus most of all on older people and least of all on children. CONCLUSIONS: PALS are intended to serve all sections of the community and accordingly need to be developed in ways that ensure the service is accessible to hard-to-reach groups such as children and young people. The remainder of the research will examine children, young people and parents' perspectives on how PALS can involve them, and will provide associated guidelines for trusts.     

Patient Advice and Liaison Services: strengthening the voices of individual service users in health-care organizations

OBJECTIVE: To explore the roles of Patient Advice and Liaison Services (PALS) in their interactions with service users. CONTEXT: Every National Health Service health-care provider in England now has a PALS, which provides service users with information and help in resolving concerns and dissatisfactions with health care. DESIGN: Longitudinal qualitative study, 2002-4. This paper draws on data from 27 semi-structured interviews. SETTING AND PARTICIPANTS: PALS personnel working in six case study PALS in London. FINDINGS: PALS personnel adopt seven roles in order to support their clients in sorting out problems with health care: information provider; listener; messenger (passing on information from service users to staff); go-between (passing information forward and back); supporter (helping service users to present their own views); mediator (when two or more parties are in dispute); resource mobilizer (when the support of senior staff or other agencies is necessary to resolve a problem). CONCLUSIONS: Though these are not new functions, PALS is a universal service which is better placed than front-line health-care staff to offer such support, and increases choice for service users looking for sources of information and advice.     

Bridging the gap? A critical analysis of the development of the Patient Advice And Liaison Service (PALS).

PURPOSE: The creation of the Patient Advice and Liaison Service (PALS) was part of a range of measures to make the NHS more patient-centred. The purpose of this paper is to present a critical analysis of PALS through examining the impact on major stakeholder groups. DESIGN/METHODOLOGY/APPROACH: The paper starts by examining the drivers for reform and the significance of PALS in the wider policy context. Key issues for implementation are then discussed including access to information, independence, cultural change in the health service and relationships with the voluntary sector. Research literature on the provision of advice in health care settings is drawn on. FINDINGS: Taking a critical perspective, the paper argues that the current model of PALS can never succeed in bridging the gap between users and the health service and will end up merely defending service interests. It concludes by arguing for an alternative model of development based on fostering strong partnerships with the community and voluntary sector. PRACTICAL IMPLICATIONS: This paper highlights critical issues for service development and delivery, including examining the impact on service users and the voluntary sector. ORIGINALITY/VALUE: PALS is a very significant development in the health care provision, operating at the interface between the service and the public and yet its development has attracted little critical comment. This paper provides a comprehensive analysis of the new service and proposes an alternative model of development.     

Quality criteria for patient advice and liaison services: what do patients and the public want?

BACKGROUND: Every NHS trust and Primary Care Trust (PCT) in England now has a Patient Advice and Liaison Service (PALS) which provides an identifiable person to whom service users can turn if they have a problem or need information while using the NHS. This paper reports data from a 2-year qualitative study of London PALS. OBJECTIVE: To develop patient-centred criteria by which to assess PALS. DESIGN: Data were generated from qualitative interviews with 15 PALS service users and 15 members of local user/carer organizations, and from a workshop with representatives of 14 user/carer organizations (national and London-wide). Emergent findings were circulated to other user/carer organizations (n = 32) for critique and comment. RESULTS: Findings suggest that users and their representatives want PALS to: be responsive to the needs and wishes of individuals; be accessible to all sections of the community, including older people, ethnic minorities and groups with special needs; offer clear, accurate and comprehensive information about local health and other services; work with their NHS organization to create a more patient-centred service; collaborate effectively with other organizations; be adequately resourced. CONCLUSIONS: These criteria resemble the national standards for PALS compiled by the Department of Health, with the exception of the need for adequate resourcing. They also resemble previous work on users' and carers' criteria for service delivery. Interestingly, PALS' lack of independence was not a major concern, though clients do need access to independent advocacy when 'insider' trouble-shooting fails. Although an alternative to the adversarial approach of complaints is welcome, PALS, like complaints procedures, may be under-used by marginalized or demoralized service users.     

Addressing alcohol and other drug use among young people from migrant and ethnic minority backgrounds: Perspectives of service providers in Melbourne,Australia

Young people from migrant and ethnic minority backgrounds are recognised as emerging priority populations for reducing alcohol and other drug (AOD)-related harms in Australia. Limited research has investigated how service providers address AOD challenges in migrant communities. In this qualitative study, we interviewed 15 service providers from AOD, migrant support, community and other health services in a diverse region of Melbourne. Interviews explored the challenges that service providers faced and the strategies they implemented to engage with young migrants in relation to AOD use. Thematic analysis was used to generate four themes: stigma as a barrier to service delivery, intergenerational differences between young people and parents, the need for outreach and establishing trust and understanding over time. Service providers believed that stigma prevented many young people from migrant backgrounds having open conversations about their AOD use with family members and professionals. Participants perceived that some parents had less AOD-related knowledge and lower English language proficiency than their children creating challenges for effective communication. Service providers recognised the importance of engaging with young people in settings where they felt comfortable rather than expecting them to approach their service. Participants also acknowledged the need to invest time in establishing trust and understanding with young migrants so they could facilitate conversations about AOD use as relationships evolved. Although service providers had a strong understanding of young people's needs, they found it challenging to build relationships in the context of funding and time constraints. Our results indicate the need for long-term funding and timelines that enable service providers to build strong relationships with young migrants, their families and their broader cultural communities to facilitate access to AOD support.     

Patient Advice and Liaison Services: results of an audit survey in England

Objective  To assess the extent national standards for Patient Advice and Liaison Services (PALS) were achieved across England.
Context  PALS are an important element of patient and public involvement strategy in England. Seven national standards for PALS were identified. Previous research has not assessed PALS across all trust types in England.
Design  Audit survey as part of a mixed method 'realistic evaluation' in which regularities of context, mechanism and outcome are hypothesized and tested.
Setting and participants  PALS based in 570 NHS trusts in England between October and December 2005.
Main outcome measures  Self reported achievement against PALS national standards.
Results  Three hundred and thirty-six valid responses were received, a response rate of 65%. However because some PALS serve more than one trust, this represents an estimated 76% of trusts. Overall, PALS rated themselves highly against all the standards, though somewhat less highly against standard 2 (seamlessness across health and social care) and standard 6 (acting as a catalyst for culture change). There was a wide range of responses with regard to PALS budget, staffing and activity levels, and statistically significant associations between levels of funding and staffing and higher levels of performance.
Conclusions  The overall response rate was good so there can be a high degree of confidence in the reliability of the results. The results indicate the challenging context in which PALS are operating. Although the majority of PALS are single trust PALS, there is a high degree of variation in key mechanism factors such as budget and staffing.     

An exploration of parents' and young people's perspectives of hospice support

Background Hospices are an important component of children's palliative care provision and increasing numbers of children/young people with life‐limiting conditions mean that the demand placed on them for support is likely to increase. However, there has been a lack of published research examining how families experience the support provided by children's hospices. Methods The aim of the study was to investigate parents' and young people's perceptions of hospice support and identify how support could be improved. A mixed‐method approach was used involving a postal survey of families and in‐depth qualitative interviews with a purposively sampled subsample of parents and young people. Results A total of 108 (49.8% response rate) questionnaires were returned and interviews were conducted with 12 parents and seven young people. Families were highly satisfied with the support provided in terms of quality of care; interpersonal qualities of the staff; the individualized, family‐focused approach; accessibility of support and involvement in decision making. Young people valued the opportunity to meet with other young people and take part in different activities. For parents the provision of a break from caring was the main way in which they were supported although they felt they wanted more of this form of support. A consistent theme in relation to support for young people and siblings was the need to develop facilities, activities and bereavement support specifically for teenagers/young people. Conclusions Parents value a model of care that provides holistic, family‐focused support that is responsive to individual needs and which promotes control and active involvement in decision making. The key challenge now is to respond to increasing need and a changing population of users.     

Rethinking place and the social work office in the delivery of children's social work services

Limited attention has been given to the concept of place in social work research and practice. This paper draws on the national evaluation of social work practices (SWPs) in England undertaken between 2009 and 2012. SWPs were pilot organisations providing independent social work services for children in out‐of‐home care in five sites. One factor distinguishing some of these pilots was their attention to place. The evaluation employed a mixed methods approach and we use data from interviews with 121 children and young people in out‐of‐home care, 19 birth parents and 31 interviews with SWP staff which explored their views and experiences of the SWP offices. Children and young people were alert to the stigma which could attach to social work premises and appreciated offices which were planned and furnished to appear less institutional and more ‘normal’. Daily interactions with staff which conveyed a sense of recognition and value to service users also contributed to a view of some SWP offices as accessible and welcoming places. Both children and parents appreciated offices that provided fun activities that positioned them as active rather than passive. Staff valued opportunities for influencing planning decisions about offices and place was seen to confer a value on them as well as on service users. However, not all the SWPs were able to achieve these aspects of place, and engaging children and families in place was less likely when the service user population was widely dispersed. Recognising the importance of place and how place is constructed through relationships between people as well as through the physical environment appeared to be key to creating offices that combated the stigma attached to out‐of‐home care. Those leading and managing children's services should explore ways of involving local communities in planning social work offices and turn attention to making these offices accessible, welcoming, places.     

Perception of need and barriers to access: the mental health needs of young people attending a Youth Offending Team in the UK

This study used a mixed methodology with young offenders attending a Youth Offending Service to identify, with regard to mental health problems, perceptions of level of need, experiences of and views on support and perceptions of barriers in accessing services. Between May and September 2008, 44 young offenders completed a questionnaire about their self-reported levels of mental health need, and their behaviour, preferences and evaluation regarding different sources of support and advice for mental health issues. Six young people were interviewed about their experiences and these data were analysed using thematic analysis. Findings showed that these vulnerable young people had a high level of mental health need, and were most likely to seek support from people with whom they had a confiding and long-standing relationship (parents and friends). For these young people, low levels of service use were not the result of a lack of provision, but because there were psychological, social, structural and cultural barriers to accessing those services including issues of understanding, stigma and confidentiality.     

Access to primary health care for Australian adolescents: How congruent are the perspectives of health service providers and young people,and does it matter?

OBJECTIVE: To explore the extent of congruence between the views of service providers and young people (on adolescents' health concerns, barriers to accessing health services and ideal service model) in order to improve and increase the appropriateness, quality and usage of primary health care services. METHODS: A qualitative data collection technique was used. During 2001/02, focus groups were conducted in urban and rural locations with adolescents (in and out of mainstream education), general practitioners, community health staff and youth health workers. RESULTS: Service providers and young people identified a similar range of health concerns for young people, with young people adding additional issues of great importance to them that service providers felt were not in their 'domain of treatment'. There was reasonable congruence in regard to 'ideal service model' with some differences relating to methods of information delivery. However, for 'barriers to accessing services' there were major discrepancies. CONCLUSIONS: While there is some common understanding between young people and service providers on certain aspects of health services, there are clearly areas where perceptions differ. This discrepancy matters because it may adversely affect the quality of provider-adolescent interaction and the willingness of adolescents to access services. IMPLICATIONS: To deliver optimal health services to young people, the differences in understanding regarding services need to be addressed. Strategies could include promotion to, and encouragement of, young people to seek help, continuing professional education of providers and changes in remuneration policies.     

'We didn't know it would get that bad': South Asian experiences of dementia and the service response

The aim of the present paper was to examine some views and experiences of dementia among older South Asian people, as well as their families and carers, and to explore central issues of service support. Data were collected in Scotland through interviews with 11 professionals working with South Asian people with dementia, and four case studies of South Asian people with a diagnosis of dementia, as well as their families and carers. The case studies demonstrated overwhelmingly negative experiences of dementia, with poor quality of life, desperate needs for support, lack of access to appropriate services, little knowledge of dementia, and isolation from community and family life. The interviews with professionals described a strong demand for services, a need to develop awareness and knowledge about dementia in South Asian communities, and a need to promote more culturally sensitive, individually responsive services. Similarities between South Asian people and the non-South Asian population include stress on carers, increasing isolation, problematic diagnostic practices, lack of knowledge and demand for service support. Differences include limited use of non-National Health Service (NHS) support, dealing with later stages of dementia at home, particularly negative views about residential care, culturally based attitudinal differences and use of the term 'dementia' in English as neutral rather than stigmatising. The present authors suggest that there is little knowledge and experience of dementia in South Asian communities, as well as restricted access to appropriate services, despite the efforts of voluntary sector and NHS special projects. There is demand for services, especially at home. Services need to develop individual responsiveness for effective working in a diverse society.     

Experiences of parents of substance-abusing young people attending support groups

Background

Substance abuse puts a burden on the physical and mental health and well-being of individuals and their families, particularly parents. Parents of substance-abusing young people are in need of professional or informal support and information. Potential and easy accessible sources are support groups. We explored the experiences of parents of substance-abusing young people attending support groups regarding several topics related to the substance-abuse of their son or daughter, the impact on their lives and their views on social support.

Methods

In this small-scale qualitative study based on in-depth interviews, we interviewed parents of substance-abusing young people focusing on their experiences concerning having a substance-abusing relative and attending the support group.

Results

All parents displayed feelings of stress and strain. They appeared to be highly satisfied with their participation in a support group. The expert status and knowledge of the facilitator and the provision of accurate information in the support group was also much appreciated. They were however dissatisfied by the attitude and knowledge of their GP.

Conclusions

Our findings suggest that parents benefit from joining support groups, particularly in terms of emotional and social support and the practical information they received.     

Adolescent drinking,social identity,and parenting for safety: Perspectives from Australian adolescents and parents

We explored young people and parents' views on adolescent drinking and safety in the locations where drinking may occur. Focus groups with adolescents and parents showed that many believed adolescent drinking and drunkenness is normative. Younger adolescents had more negative views of adolescent drinkers than their older peers. Adolescent drinking occurred in private settings and parents made decisions about allowing their adolescent children to attend social events based on the level of safety attributed to the location. If adolescent drinking was likely then home was the preferred location as it provided scope for risk minimisation. Positive portrayals of non-drinking adolescents and information to assist parents' decision-making are needed.     

Exploring opportunities to project a "responsible man" image: gatekeepers views of young men's sexual and reproductive health needs in Uttaranchal, India

Increase in extramarital sex among youths, gender-based violence, lack of contraceptive knowledge among newly married couples and lack of knowledge of protection against diseases like STIs/HIV are the information and service needs of young people that need to be addressed urgently in order to make them future knowledgeable, responsible, and non-violent partners. In addressing these needs the gatekeepers, including parents, formal and informal community leaders and teachers, play a critical role, by facilitating/hindering access to appropriate and correct information about sexual and reproductive health to young people. The study was conducted in a district of Uttaranchal, India. The specific objective was to understand the social context and gatekeepers' views on family planning and sexual and reproductive health needs of young men. Thirty-two in-depth interviews and four focus group discussions were conducted with parents, formal and informal community leaders, teachers, and selected development officials. The findings indicate that gatekeepers are worried about rapid changes in the aspiration, expectation, and behavior of young men. Most of them were seriously concerned about the increasing drinking habit, use of drugs, and changing values of sexuality leading to various risk behaviors among young men. They felt that many of these changes are consequences of wider societal changes, rising aspirations, explosion of electronic media, and globalization of a new youth culture where extramarital sex, alcohol consumption, and violence are expressions of different facets of masculinity and symbols of the affluent class. Overall, there was a feeling that TV/films and their peers now influence more the socialization of young people and parents are losing control in guidance and mentoring of their children.     

The participation of children and young people in decisions about UK service development

BACKGROUND: The involvement of children and young people in decisions regarding service development is well supported in government policy and underpinned by the UN Convention on the Rights of the Child. Information on the extent, nature and outcomes of children and young people's participation can inform further development in this area. METHODS: Systematic literature searches, plus contact with professional networks, were used to gather and review evidence on children and young people's participation. RESULTS: There is a rapidly developing body of information describing and analysing innovative practices in this field. However, there is also a smaller, but substantial, amount of evidence demonstrating the limited extent of current involvement. A good deal of guidance is now available about how to promote the involvement of children and young people. However, the basis of this advice is not always clear, and more evidence about children's views and their experience of participation in public decision-making is required. Issues identified as barriers to change included adult attitudes and intransigence, lack of training for key adults, lack of clarity leading to tokenism, the nature of organizations (i.e. their formality, complexity, bureaucracy and internal politics) and the short-term nature of much funding. The evidence suggests that good practice includes a listening culture among staff, clarity, flexibility, adequate resources, skills development and training for staff and participating children and young people, inclusion of marginalized groups, feedback and evaluation. There is only limited evidence that children and young people's involvement in public decision-making leads to more appropriate services, although there is evidence that participating children and young people benefit in terms of personal development and that staff and organizations learn more about their views. CONCLUSIONS: The value of the participation of children and young people in public decision-making is now well accepted, and is recognized in the standards set in the Children's National Service Framework. However, there is an urgent need for internal and external evaluations of children's involvement.     

Services for children with developmental co-ordination disorder: the experiences of parents

Background Parents provide valuable information on their experiences of engaging with therapy services for their children, which can inform the future development of these services. The aim of this study was to explore the views and experiences of parents who had accessed therapy services for their child with developmental co‐ordination disorder (DCD). Methods Seven focus groups were conducted incorporating 52 parents who had a child diagnosed with, or fitting the diagnostic criteria for DCD. Focus groups were audiotaped, transcribed and analysed thematically. Findings Parents reported struggling to gain access to therapy services. When they gained access, they found the services beneficial for their child but continued to experience difficulties regarding the quality of service delivery. Conclusions/implications The study suggests that parents thought some health‐care professionals lacked knowledge and understanding of DCD, which they believed impacted upon early recognition and access to services. They perceived that therapy at an early age was vital for children's development, and indicated that a clearer path for accessing these services was necessary in addition to improved service quality. They called for an increase in awareness of DCD by all therapy service professionals to aid early recognition and improved treatment.     

Homelessness—‘It will crumble men’: The views of staff and service users about facilitating the identification and support of people with an intellectual disability in homeless services

People with an intellectual disability (ID) face significant health inequalities and barriers to accessing appropriate support, which are made worse if the person is also homeless. An important barrier is that services may not recognise that the person has ID. This qualitative study explored the views of staff members and service users about the identification and support needs of homeless people with ID and the role of an ID screening questionnaire as a way to help improve service provision. Semi‐structured interviews were conducted with 16 staff members and 8 service users from homeless services in the South East of Scotland between March 2017 and 2018. Thematic analysis identified four themes: ‘not diagnosed or declared’, which explored the barriers to support due to the person's ID not being identified by others or disclosed by the person; ‘It will crumble men’, which reported on the additional challenges faced by homeless people with ID; ‘disabling environment’ which identified the ways in which organisations can make support difficult for people with ID to access; and ‘It's not against them, it's to help them’ which explored the benefits and issues associated with screening for ID in homeless services. The results identified the complex support needs likely to be experienced by many homeless people with ID and suggested a number of implications for practice. First, the screening tool was seen as having a number of benefits, if used where there is a process to provide the person with further specialist assessment and support. Second, staff members identified a need for training in relation to identifying and supporting this group of people. Third, the screening tool was seen as a way to help provide information about the prevalence and needs of people with ID, in order to inform and shape policy, service development, and delivery.     

Inflammatory bowel disease in young patients: challenges faced by black and minority ethnic communities in the UK

There is strong evidence indicating that inflammatory bowel disease (IBD) is increasing among black and minority ethnic (BME) communities. Despite this rise in prevalence, there is a paucity of research relating to ethnicity and IBD outside the USA. Furthermore, the symptoms of IBD are reported to start during childhood or adolescence in 20–25% of people with the condition. It is therefore important that young people's experiences of diagnosis, treatment and living with IBD are fully understood to ensure effective services and information provision. The study reported on in this paper was commissioned by a UK charity (Crohn's and Colitis UK) with the aim of increasing understanding of the specific issues and service needs of young people with IBD from BME communities. Empirical research entailed in‐depth semi‐structured interviews with 20 young people from BME groups accessed through gastroenterology departments at three collaborating NHS hospitals in England serving ethnically diverse populations. Interviews were carried out from June to December 2010 and sought to capture young people's views with IBD. A thematic analysis of their experiences identified many commonalities with other young people with IBD, such as the problematic route to formal diagnosis and the impact of IBD on education. The young people also experienced tensions between effective self‐management strategies and cultural norms and practices relating to food. Moreover, the ability of parents to provide support was hampered for some young people by the absence of culturally competent services that were responsive to the families’ communication needs. The findings highlight the need for more culturally appropriate information concerning IBD, and improved responsiveness to young people with IBD within primary care and the education system, as well as culturally competent messaging relating to the specific nature of the condition among the wider South Asian and black communities.