The Experiences and Needs of Younger Couples Affected by Prostate Cancer: a Qualitative Study

Background: Prostate cancer (PCa) is often referred to as an illness affecting ‘older men, however the prevalence amongst younger men (aged ≤65) is rising. Illness- related stressors impact upon both members of the couple (man with PCa and partner/wife), and on their relationships, yet little is known about how younger couples are affected. This thesis aimed to explore the experiences and needs of younger couples affected by PCa, with a view to informing intervention development and service provision. Methods: Participants were recruited from respondents to a national study (Life After Prostate Cancer Diagnosis (LAPCD)), who indicated on the LAPCD questionnaire their willingness to be interviewed. Qualitative, semi-structured telephone interviews were separately conducted with twenty-eight couples (56 participants). Data were analysed using the Framework Method. Findings: Couples’ experienced transitions due to the impact of PCa in their relationships, parental and familial roles, work and finances. Connections with other people and social activities were also sometimes affected. Couples experienced challenges navigating their way through treatment decision making and finding the information and support they needed. Couples’ engaged in a range of different strategies and behaviours which influenced their adjustment to PCa and subsequently impacted upon the evolution of their identity as a couple. Conclusions: This thesis has made a new contribution to knowledge by identifying the many challenges younger couples affected by PCa experience and describing their adjustment processes. Two key areas where support should be directed to younger couples were identified: 1) couple focused support programme to foster relationship strategies/behaviours that facilitate couple adjustment; 2) age-specific support, e.g. ‘buddying systems’ connecting younger couples affected by PCa together; tailored information and self-management strategies for younger couples (written/online/app)

Using the framework method for the analysis of qualitative dyadic data in health research

There are an increasing number of qualitative studies which focus on the dyad (couples, families, caregivers–patients, health care professionals–patients). However, there is limited literature regarding qualitative methodology for dyadic analysis when members of the couple have been interviewed separately. The aim of this article is to share the knowledge we gained from undertaking a novel approach to dyadic analysis. We used an adapted version of the Framework method on data gathered in a study exploring the impact of prostate cancer on younger men and their partners. In this article, we examine and reflect on the challenges of this type of analysis and describe how we analyzed the interview data from a dyadic point of view, to share what we learned in the process

The challenges on the family unit faced by younger couples affected by prostate cancer: A qualitative study

Objective. The number of younger men being diagnosed with Prostate cancer (PCa), (aged ≤ 65) is increasing. It is recognised that PCa and treatment side effects can have a significant impact on quality of life. This study explores the challenges faced by younger couples affected by PCa with dependent children (under 18 years) or young adults (18-29 years) in their families. Methods. Twenty-three men with PCa and their partners were interviewed (separately) by telephone. Participants were recruited from respondents to the Life After Prostate Cancer Diagnosis (LAPCD) national survey. Men were three to five years post-diagnosis, and following a range of treatment pathways. Data were analysed using the Framework approach. Results. Younger couples affected by PCa felt challenged by issues relating to their parental role and the dynamics within the family. Five main themes emerged: difficult conversations about PCa diagnosis; parental perceptions of the impact of diagnosis on children; parental responses to the impact of PCa on the family; shielding, coping and normalising strategies; and levels of support. Conclusions. A diagnosis of PCa can cause significant disruption to the family unit and the quality of life of its members. Support programmes offering guidance to children/young adults affected by PCa in their family, and addressing the concerns of parents may help families to better adapt. Encouraging clinical professionals to initiate conversations with younger couples about their children may be a way forward in directing appropriate support. Further research is needed to elucidate appropriate, effective supportive interventions

Prostate cancer and the impact on couples; a qualitative metasynthesis

Purpose: To review and interpret existing qualitative literature on the experiences of couples affected by prostate cancer (PCa). Methods: A metasynthesis was carried out which included a systematic search of seven databases between 2000 and 2016. A modified version of Noblit and Hare’s meta-ethnographic approach was used to synthesise qualitative study findings and inform overarching interpretations. Results: Thirty-seven studies focusing on the experiences of men with PCa and their partner dyad were included producing seven interconnected constructs. The construct accepting change vs seeking continuity reflects the range of ways individuals within the dyad and couples adjust to the diagnosis. Cultivating connection vs disengaging illustrates how couples seek to manage the impact of PCa and its treatment on their relationship, which may lead to a threatened identity, including sexual insecurities. Shielding me, you and us reflects the ways in which couples strive to protect themselves as individuals and/or each other from the impact of PCa. Being a partner and its challenges highlights the responsibilities partners assume and the impact of their supporting role. Yet, partners sometimes report feeling unsupported and side-lined both by the man they are caring for and by healthcare professionals. Couples often recognise the value of facing PCa together. Conclusions: PCa affects both members of the dyad as individuals, as well as the couple’s relationship. How best to support couples and how to overcome difficulties in expressing their concerns to one another requires further consideration. Healthcare professionals should endeavour to employ a couple-focused approach where appropriate

The experiences and needs of couples affected by prostate cancer aged 65 and under :a qualitative study

PURPOSE: Prostate Cancer (PCa) is often considered to be an illness affecting older men, however the prevalence in younger men (&lt;=65 years) is rising. Diagnosis and treatment for PCa can have a significant impact on the lives of both the man with PCa and his partner. This study explored the experiences and needs of younger men and their partners affected by PCa. The findings will be used to inform service provision and develop interventions appropriate to need.METHODS: Participants were recruited from respondents to a national PROMS study (Life After Prostate Cancer Diagnosis (LAPCD), who indicated on completed questionnaires their willingness to be interviewed. Semi-structured telephone interviews were conducted with twenty-eight couples, separately (56 participants). Data were analysed using the Framework Method.RESULTS: Following the diagnosis of PCa, couples' experienced changes in their intimate relationships, parental/familial roles, work and finances, and social connections and activities. Couples adopted a range of strategies and behaviours to help their adjustment to PCa, such as communicating with each other, distancing, distraction, and adopting a positive mindset towards PCa. This, in turn, influenced how their identity as a couple evolved.CONCLUSIONS: Following a diagnosis of PCa, the identity of couples are continually evolving. It is important that these couples are provided with the appropriate information, support and resources to help them transition along the cancer pathway.IMPLICATIONS FOR CANCER SURVIVORS: Key areas of support identified for younger couples include: 1) couple focused support programme to foster relationship strategies/behaviours that facilitate couple adjustment; 2) age-specific support, e.g. 'buddying systems' connecting younger couples affected by PCa and providing them with tailored information (written/online/app).</p

Experiences and support needs of parents/caregivers of children with cancer through the COVID-19 pandemic in the UK : a longitudinal study

OBJECTIVE: To explore the experiences, information and support needs of parents/caregivers of children with cancer and how these changed as the COVID-19 pandemic evolved. DESIGN: Online surveys containing closed and free-text questions on experiences, information and support needs were completed at four time points (between April 2020 and October 2021) during the COVID-19 pandemic. Descriptive statistics of closed items and content analysis of qualitative data were conducted. SETTING: Online. PARTICIPANTS: Parents/caregivers of children with cancer. RESULTS: 335 parents/caregivers completed the survey over four time points. Findings revealed that parents'/caregivers' worry about the virus and vigilance about their child's virus symptoms decreased over time. Parents reporting the need for support on how to reduce their worries and/or family members during the virus outbreak were low, however parents reported a slight increase in need for support at T3 when schools reopened. Qualitative findings reported the following themes: (1) Psychological well-being of parents/caregivers, (2) Changing perceptions of risks/priorities, (3) Adjusting to COVID-19: Living with continued caution, (4) Healthcare and treatment provision, (5) Information seeking and needs during COVID-19. CONCLUSIONS: The COVID-19 pandemic disrupted people's lives and routines in relation to access to support, finances, education and social lives, leading to psychological distress. Parents highlighted the need for timely, up-to-date and personalised information in relation to COVID-19 and their child with cancer. Further consideration of the development of technology-based health solutions may provide an efficient and safe way to connect with and support parent/caregivers

Using the framework method for the analysis of qualitative dyadic data in health research

There are an increasing number of qualitative studies which focus on the dyad (couples, families, caregivers–patients, health care professionals–patients). However, there is limited literature regarding qualitative methodology for dyadic analysis when members of the couple have been interviewed separately. The aim of this article is to share the knowledge we gained from undertaking a novel approach to dyadic analysis. We used an adapted version of the Framework method on data gathered in a study exploring the impact of prostate cancer on younger men and their partners. In this article, we examine and reflect on the challenges of this type of analysis and describe how we analyzed the interview data from a dyadic point of view, to share what we learned in the process

Experiences and support needs of parents/caregivers of children with cancer through the COVID-19 pandemic in the UK: a longitudinal study

Objective: to explore the experiences, information and support needs of parents/caregivers of children with cancer and how these changed as the COVID-19 pandemic evolved.Design: online surveys containing closed and free-text questions on experiences, information and support needs were completed at four time points (between April 2020 and October 2021) during the COVID-19 pandemic. Descriptive statistics of closed items and content analysis of qualitative data were conducted.Setting: online.Participants: parents/caregivers of children with cancer.Results: 335 parents/caregivers completed the survey over four time points. Findings revealed that parents’/caregivers’ worry about the virus and vigilance about their child’s virus symptoms decreased over time. Parents reporting the need for support on how to reduce their worries and/or family members during the virus outbreak were low, however parents reported a slight increase in need for support at T3 when schools reopened. Qualitative findings reported the following themes: (1) Psychological well-being of parents/caregivers, (2) Changing perceptions of risks/priorities, (3) Adjusting to COVID-19: Living with continued caution, (4) Healthcare and treatment provision, (5) Information seeking and needs during COVID-19.Conclusions: the COVID-19 pandemic disrupted people’s lives and routines in relation to access to support, finances, education and social lives, leading to psychological distress. Parents highlighted the need for timely, up-to-date and personalised information in relation to COVID-19 and their child with cancer. Further consideration of the development of technology-based health solutions may provide an efficient and safe way to connect with and support parent/caregivers

Barriers and facilitators to integrated cancer care between primary and secondary care: a scoping review

Purpose: this scoping review identifies and characterises reported barriers and facilitators to providing integrated cancer care reported in the international literature, and develops recommendations for clinical practice.Methods: this scoping review included literature published between 2009 and 2022 and describes the delivery of integrated cancer care between primary and secondary care sectors. Searches were conducted of an online database Ovid Medline and grey literature.Results: the review included thirty-two papers. Barriers and facilitators to integrated cancer care were identified in three core areas: (1) at an individual user level around patient-healthcare professional interactions, (2) at an organisational level, and (3) at a healthcare system level. The review findings identified a need for further training for primary care professionals on cancer care, clarity in the delineation of primary care and oncologist roles (i.e. who does what), effective communication and engagement between primary and secondary care, and the provision of protocols and guidelines for follow-up care in cancer.Conclusions: information sharing and communication between primary and secondary care must improve to meet the increasing demand for support for people living with and beyond cancer. Delivering integrated pathways between primary and secondary care will yield improvements in patient outcomes and health economic costs

Prostate cancer and the impact on couples: a qualitative metasynthesis

PurposeTo review and interpret existing qualitative literature on the experiences of couples affected by prostate cancer (PCa).MethodsA metasynthesis was carried out which included a systematic search of seven databases between 2000 and 2016. A modified version of Noblit and Hare’s meta-ethnographic approach was used to synthesise qualitative study findings and inform overarching interpretations.ResultsThirty-seven studies focusing on the experiences of men with PCa and their partner dyad were included producing seven interconnected constructs. The construct accepting change vs seeking continuity reflects the range of ways individuals within the dyad and couples adjust to the diagnosis. Cultivating connection vs disengaging illustrates how couples seek to manage the impact of PCa and its treatment on their relationship, which may lead to a threatened identity, including sexual insecurities. Shielding me, you and us reflects the ways in which couples strive to protect themselves as individuals and/or each other from the impact of PCa. Being a partner and its challenges highlights the responsibilities partners assume and the impact of their supporting role. Yet, partners sometimes report feeling unsupported and side-lined both by the man they are caring for and by healthcare professionals. Couples often recognise the value of facing PCa together.ConclusionsPCa affects both members of the dyad as individuals, as well as the couple’s relationship. How best to support couples and how to overcome difficulties in expressing their concerns to one another requires further consideration. Healthcare professionals should endeavour to employ a couple-focused approach where appropriate